tag:blogger.com,1999:blog-23649169667082154762024-03-13T04:55:17.091-07:00SAN DIEGO LYMERMy journey down the rabbit hole that is called Lyme Disease. I became sick after a trip to Virginia in December 2009. Within weeks of returning to Southern California, I became sick and it was then that MY WHOLE LIFE CHANGED. It's been quite a journey since then. I started this blog as an outlet to try and share info I've learned and also links to other sites that I found very helpful.Sandiehttp://www.blogger.com/profile/04238939507752991559noreply@blogger.comBlogger68125tag:blogger.com,1999:blog-2364916966708215476.post-89358119117160286802012-12-20T18:15:00.000-08:002012-12-20T18:15:27.401-08:00The Invisible Illness<div class="separator" style="clear: both; text-align: center;">
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Hi everyone, well it's been quite a long time since I've posted. I've been on the proverbial Lyme "rollercoaster" over the last few months and quite honestly, I just didn't think I had anything to say. But recently I read an article about a woman who coined the term "Invisible Illness". I immediately could relate to living with an illness that people can't readily "SEE".<br />
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(you can read more about her at: <a href="http://www.huffingtonpost.com/lisa-copen/living-with-invisible-illness_b_937234.html" target="_blank">www.huffingtonpost.com/lisa-copen/living-with-invisible-illness_b_937234.html</a>)<br />
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Now I do walk with a cane, and depending on how my legs are doing on that particular day, sometimes I have to bring along Johnny Walker Red (my red walker and my Dad came up with that clever name!) so I DO have something to indicate that "ALL IS NOT WELL WITH ME"! But so many of my fellow Lyme friends do not have a cane or walker and go thru life in constant illness and pain, and people have no concept of what they are feeling. I don't like to complain, and after three years now of living with Lyme Disease and other co-infections, I only express my discomfort when the pain level reaches a "7" or higher. And at that point, I just don't care.<br />
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But all that to say, that today, just a mere 5 days before Christmas, I summoned up the energy to face the crowds and do a few errands. First the Dollar Store (GREAT deals on wrapping paper BTW!) and then CVS to pick up a few things, and then finally on to the grocery store. All the while, I am PUSHING and PUSHING to keep going. Sure I might look "okay" on the outside. But it doesn't reflect AT ALL what I'm feeling on the inside. On the inside, I'm thinking that my leg pain is getting really bad, but just to push through. And my brain is beginning to shut down like it does everytime I go shopping and get too overstimulated. This all started after I became sick with Lyme - trust me, I used to be a NORMAL person! I was SO normal in fact, that I was like the Energizer Bunny. I had SO much energy and was always GO GO GO. I loved to get out and be social, I loved shopping, I loved being active and hiking and always thinking about what exciting thing I was going to do next.<br />
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Now, I can spend weeks at a time barely able to get out of bed or off the couch and then invariably I will wake up and have a LITTLE bit more energy and that's when I know I need to take care of things until I crash again. Living with Lyme has certainly taught me to become very in tune with my body.<br />
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But today, running these errands, made me realize how different I was than all the other shoppers buzzing about, doing their last minute Christmas shopping. I had to PUSH and PUSH to keep going, and I had to keep refocusing my brain back to what I needed at the store, it's all so very hard but it's my life now.<br />
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People ask me all the time, "Are you feeling better yet/now/today? (pick a word) and actually when I think back to 2 years ago, when I was at my worst, I can say something positive, like "yes, I AM doing better than I was 2 years ago" and people say "That's great!" I always feel like people need to hear something positive. Am I really better? Yes, I can honestly say YES. But if you knew how sick I still was, the healing process has been agonizingly slow.<br />
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I'm still in treatment and taking a zillion pills a day, I have to watch my diet and avoid things that will increase my inflammation (I have enough pain to deal with) and take things to HELP my immune system. But anytime I start feeling down about my situation, I just think back to how much WORSE I was before. I have a long way to go, but I HAVE to believe that someday I will get my life back. It can't come soon enough.<br />
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Much love,<br />
S.<br />
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<br />Sandiehttp://www.blogger.com/profile/04238939507752991559noreply@blogger.com2tag:blogger.com,1999:blog-2364916966708215476.post-29550613928267259462012-08-15T21:51:00.002-07:002012-08-15T21:51:21.578-07:00Lyme Disease 101: Interview with Dr. Steven Harris and Dr. Linda Williams<span class="Apple-style-span" style="color: #333333; font-family: arial, sans-serif; font-size: 13px; line-height: 18px;">Lyme Disease 101: Video of Radio Interview with Dr. Steven Harris and Dr. Linda Williams who discuss Lyme Disease symptoms which can affect the </span><span class="Apple-style-span" style="color: #333333; font-family: arial, sans-serif; font-size: 13px; line-height: 18px;">brain, nerves, eyes, joints, and heart beat. They also discuss antibiotic treatment of Lyme disease, vaccine, diagnosis and bacterial effects of Lyme Disease, ELISA and Western blot blood tests, the Borrelia burgdorferi spirochete, harmful bacterias and tick borne diseases, human pathogens, Lyme disease research, children with Lyme Disease, the comorbidities of Lyme Disease, Bell's palsy, Chlamydia, Bartonella, and ILADS, (International Lyme And Associated Diseases Society)</span><br />
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<br />Sandiehttp://www.blogger.com/profile/04238939507752991559noreply@blogger.com5tag:blogger.com,1999:blog-2364916966708215476.post-52863919768056491362012-08-15T21:40:00.002-07:002012-08-15T21:40:29.002-07:00Understanding Calcium Magnesium Ratio<br />
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UNDERSTANDING CALCIUM MAGNESIUM RATIO</h1>
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According to the National Institutes of Health, approximately 43 percent of Americans (including almost 70 percent of older women) take dietary supplements containing calcium. But failing to balance calcium with magnesium may actually do more harm than good.</div>
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Most people, including many medical doctors, do not understand certain key facts about calcium and its sister mineral, magnesium. </div>
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When everything is in proper balance, magnesium helps the body to absorb and metabolize calcium. Unfortunately, American diet and supplementation practices lead to overconsumption of calcium, and soil depletion and processing of foods lead to underconsumption of magnesium. </div>
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The problem with this is that excess calcium intake can cause problems in the body. The National Institutes of Health Office of Dietary Supplements reports that less than half of calcium people ingest is actually absorbed in the gut. The rest may be excreted, or it can linger in the body to form kidney stones or cause calcification (hardening) in soft tissues.</div>
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In addition, numerous studies have shown that magnesium converts vitamin D into its active form so it can aid calcium absorption. <a href="http://www.wellnesstimes.com/health-resources/articles/magnesium-0" style="color: #7aba43; font-weight: bold; text-decoration: none;" target="_blank">Magnesium</a> also stimulates the hormone calcitonin, which helps preserve bone structure and draws calcium out of the blood and soft tissues back into the bones, lowering the likelihood of osteoporosis, some forms of arthritis,<a href="http://www.wellnesstimes.com/articles/magnesium%E2%80%99s-many-heart-health-benefits" style="color: #7aba43; font-weight: bold; text-decoration: none;" target="_blank">heart attack</a> and kidney stones.</div>
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A growing amount of scientific evidence, including a 2004 study published in the <em>British Medical Journal</em>, points to high calcium/low magnesium intake leading to calcification, or hardening, of arteries (also known as atherosclerosis, which can cause heart disease, the leading cause of death in the U.S.), osteoporosis and osteoporotic bone fractures.</div>
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<strong>Why the imbalance?</strong></div>
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Recommendations for calcium intake vary greatly across the globe. In the U.S., adults are advised to consume 1,000 mg (or up to 1,500 mg for women over 50) of calcium daily. The U.K. recommends 700 mg daily, while the World Health Organization recommends only 400 to 500 mg daily.</div>
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Many people take supplements providing these high levels of calcium without considering the amount they consume through diet, both from food sources and from water (some tap and mineral waters). The typical American diet, especially when it contains dairy products, is high in calcium. The result? A greater amount of unabsorbed calcium in the body. </div>
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The calcium-to-magnesium ratio commonly accepted by health professionals (and seen in many dietary supplements) is 2:1, but this is based on a flawed understanding of the body’s needs. It traces back to the French scientist Dr. Jean Durlach, who proposed the ratio as an outermost, not-to-be-exceeded level when considering calcium intake from all sources (food, water and supplements). This has been largely misunderstood and is taken as a recommendation of a 2:1 calcium-to-magnesium ratio in dietary supplements.</div>
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The fact that most people do not meet the minimum daily requirement for magnesium exacerbates the situation. The high-calcium/low-magnesium diet of most Americans, when coupled with calcium supplementation, can skew the ratio to 4:1 or 5:1—or even higher—increasing risk of impaired bone health and heart disease.</div>
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<strong>Striking a balance</strong></div>
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The key to calcium-magnesium balance is at the cellular level. Calcium’s effectiveness and benefits with respect to bone health and the prevention of osteoporosis are enormously impaired unless the body maintains adequate magnesium levels. Unfortunately, it is difficult to get enough magnesium through diet to even meet the minimum RDA requirements because it has been farmed out of the soil and eliminated from most processed foods. </div>
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I recommend monitoring dietary calcium intake, supplementing with vitamin D3, getting the minimum daily requirement of magnesium and aiming for a 1:2 or at least a 1:1 calcium-magnesium ratio.</div>
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If you plan to supplement with magnesium, I recommend building up to 300 mg daily. Magnesium supplements are safer than calcium supplements, because magnesium is excreted more completely and doesn’t build up in the body.</div>
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The only people who should avoid self-administering magnesium are those with heart block (the type that requires a pacemaker), myasthenia gravis (because their muscles are already too relaxed) or bowel obstruction, and people who are on kidney dialysis.</div>
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For more information on magnesium, visit the nonprofit educational resource site <a href="http://www.nutritionalmagnesium.org/" style="color: #7aba43; font-weight: bold; text-decoration: none;" target="_blank">www.nutritionalmagnesium.org</a>.</div>
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By: <a class="username" href="http://www.wellnesstimes.com/users/carolyn-dean-md-nd" style="color: #7cb44e; font-weight: bold; text-decoration: none;" title="View user profile.">Carolyn Dean, MD, ND</a></div>
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<span style="font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 10px; line-height: normal;">Dr. Dean is a medical doctor and naturopathic doctor in the forefront of the natural medicine revolution since 1979. She is the author/coauthor of 29 health books (print and eBooks) including </span><em style="font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 10px; line-height: normal;">The Magnesium Miracle</em><span style="font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 10px; line-height: normal;">, </span><em style="font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 10px; line-height: normal;">IBS for Dummies</em><span style="font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 10px; line-height: normal;">, </span><em style="font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 10px; line-height: normal;">IBS Cookbook for Dummies</em><span style="font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 10px; line-height: normal;">, </span><em style="font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 10px; line-height: normal;">The Yeast Connection and Women’s Health</em><span style="font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 10px; line-height: normal;">, </span><em style="font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 10px; line-height: normal;">Future Health Now Encyclopedia</em><span style="font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 10px; line-height: normal;">, </span><em style="font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 10px; line-height: normal;">Death by Modern Medicine</em><span style="font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 10px; line-height: normal;">, </span><em style="font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 10px; line-height: normal;">Everything Alzheimers</em><span style="font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 10px; line-height: normal;">, and </span><em style="font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 10px; line-height: normal;">Hormone Balance</em><span style="font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 10px; line-height: normal;">. Dr. Dean is the medical director of the non-profit educational site</span><em style="font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 10px; line-height: normal;">—</em><a href="http://www.nutritionalmagnesium.org/" style="color: #7cb44e; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 10px; font-weight: bold; line-height: normal; text-decoration: none;" target="_blank">Nutritional Magnesium Association</a><span style="font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 10px; line-height: normal;">. She has a free online newsletter, a valuable online 2-year wellness program called </span><a href="http://www.drcarolyndean.com/fhn" style="color: #7cb44e; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 10px; font-weight: bold; line-height: normal; text-decoration: none;" target="_blank">Completement Now!</a><span style="font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 10px; line-height: normal;"> and runs a busy telephone consulting practice. For more information, visit </span><a href="http://drcarolyndean.com/" style="color: #7cb44e; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 10px; font-weight: bold; line-height: normal; text-decoration: none;" target="_blank">DrCarolynDean.com</a><span style="font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 10px; line-height: normal;">.</span></div>
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<span class="Apple-style-span" style="color: #888888; font-family: Arial, Helvetica, sans-serif;"><span class="Apple-style-span" style="font-size: 14px; line-height: 20px; text-transform: uppercase;"><b><br /></b></span></span>Sandiehttp://www.blogger.com/profile/04238939507752991559noreply@blogger.com2tag:blogger.com,1999:blog-2364916966708215476.post-28537095958789090602012-08-13T02:43:00.000-07:002012-08-13T02:43:25.674-07:00Candida Die Off Many Lyme patients also suffer from Candida which can result from long term antibiotics (although even a short course of abx can result in a yeast infection). I came across a forum that discusses this subject and thought I would pass it along. It is located at: <a href="http://welltellme.com/discuss/index.php?topic=425.0" target="_blank">Candida Die Off Forum</a><br />
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Some excerpts from the site. . . .. .<br />
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<blockquote class="bbc_standard_quote" style="background-attachment: initial; background-clip: initial; background-color: #d7daec; background-image: url(http://welltellme.com/discuss/Themes/default/images/theme/quote.png); background-origin: initial; background-position: 0.1em 0.1em; background-repeat: no-repeat no-repeat; border-bottom-color: rgb(153, 153, 170); border-bottom-style: solid; border-bottom-width: 2px; border-top-color: rgb(153, 153, 170); border-top-style: solid; border-top-width: 2px; color: black; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: x-small; line-height: 1.4em; margin-bottom: 0.3em; margin-left: 0px; margin-right: 0px; margin-top: 0.1em; overflow-x: auto; overflow-y: auto; padding-bottom: 1.1em; padding-left: 1.4em; padding-right: 1.4em; padding-top: 1.1em;">
<span class="bbc_size" style="font-size: 10pt; line-height: 1.4em;">Many yeast sufferers, after starting a program for yeast control, have experienced a worsening of their condition. This can of course be a most unsettling and discouraging development and if not understood and addressed effectively, may not only forestall one's progress, but possibly bring it to a screeching halt. We therefore want to share our insights and strategies to minimize the chances of suffering unnecessarily from yeast die-off reactions.<br /><br />Common yeast die-off symptoms, some individuals may develop one or several of these concurrently<br /><br />Fatigue, brain fog, gastro-intestinal distress such as nausea, gas, bloating, diarrhea or constipation, low grade fever, headache, sore throat, body itch, muscle and / or joint soreness or pain, feeling as if coming down with a flu...<br /><br />[Yeast die-off reactions are] an indication that yeast cells are dying, usually in large numbers, and is more of an indicator of the system's toxic overload. More poisons are being released than the body can adequately cope with at one time. In most cases, yeast die-off is a sign that the system's eliminatory pathways are overburdened or as oftentimes happens, blocked, as in constipation and liver stress...<a class="bbc_link" href="http://www.modernherbalist.com/dieoff.html" style="border-bottom-color: rgb(168, 182, 207); border-bottom-style: solid; border-bottom-width: 1px; color: #334466; text-decoration: none;" target="_blank"><em style="font-style: italic;"><span class="bbc_color" style="color: red;">from The Modern Herbalist</span></em></a></span></blockquote>
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<blockquote class="bbc_standard_quote" style="background-attachment: initial; background-clip: initial; background-color: #d7daec; background-image: url(http://welltellme.com/discuss/Themes/default/images/theme/quote.png); background-origin: initial; background-position: 0.1em 0.1em; background-repeat: no-repeat no-repeat; border-bottom-color: rgb(153, 153, 170); border-bottom-style: solid; border-bottom-width: 2px; border-top-color: rgb(153, 153, 170); border-top-style: solid; border-top-width: 2px; color: black; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: x-small; line-height: 1.4em; margin-bottom: 0.3em; margin-left: 0px; margin-right: 0px; margin-top: 0.1em; overflow-x: auto; overflow-y: auto; padding-bottom: 1.1em; padding-left: 1.4em; padding-right: 1.4em; padding-top: 1.1em;">
<span class="bbc_size" style="font-size: 10pt; line-height: 1.4em;">Counteracting Die-Off<br /><br />When yeast cells are rapidly killed by the immune system, drug treatment, or dietary intervention, a "die-off" or Herxheimer reaction occurs. This reaction is caused by the massive release of toxins from dying candida cells. Toxic proteins from the dead yeasts cross cell membranes, enter the bloodstream, and trigger an intense immune reaction.<br /><br />Other death-stress chemicals cause direct cellular toxicity throughout the body. Immune/yeast complexes trigger the release of histamine, an irritating tissue hormone which initiates tissue inflammation and causes discomfort. Severe allergic and toxic reactions exacerbate the symptoms of candida. Die-off reactions may last from a few days to a few weeks but usually clear up in less than a week.<br /><br />Yeast Die-Off Inhibits Treatment<br /><br />Die-off and the Herxheimer reaction occur when a larger number of yeasts die rapidly, releasing toxins and causing allergic reactions. A die-off reaction is especially pronounced when using powerful antifungal drugs like Nystatin that literally cause yeast cells to burst apart. Even though a strong die-off reaction causes a significant amount of discomfort, it is a sign of a successful treatment.<br /><br />Perhaps one of the most unfortunate aspects of a severe Herxheimer reaction is that it may cause individuals to abandon a successful treatment prematurely. The Herxheimer reaction keeps many individuals indulging in their pro-yeast lifestyle like the withdrawal reaction keeps drug abusers addicted.<br /><br />An effective means to reduce the discomfort of die-off is to take the supplement compounds listed under "Other anti-yeast supplements," (at left), drink plenty of fluids, and consume 30-40 grams a day of dietary fiber. That will deactivate, absorb and rid the body of toxic debris from dead yeasts...<a class="bbc_link" href="http://intelegen.com/nutrients/candida_yeast_protection_program2.htm" style="border-bottom-color: rgb(168, 182, 207); border-bottom-style: solid; border-bottom-width: 1px; color: #334466; text-decoration: none;" target="_blank"><em style="font-style: italic;"><span class="bbc_color" style="color: red;">from Candida Yeast Protection Program</span></em></a></span></blockquote>
Sandiehttp://www.blogger.com/profile/04238939507752991559noreply@blogger.com0tag:blogger.com,1999:blog-2364916966708215476.post-65716427434070748542012-08-03T01:31:00.000-07:002012-08-03T01:31:27.753-07:00How to interpet the bands on my Western Blot Lyme Test?<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRJ4BoLZFg1mAOvtvw01bzYmQwmJU6bWxGuITcKEYlx4TTeujGSUyxhAchRhbdi8vVpSJD9QWAi4XnWYV21yCGuGQOnOnfWDvNOF0GljppfW_gkd1umoP_0CJUPH0ApsC12uQoeFEjIA/s1600/Western+Blot+Lyme+Band+Chart.gif" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;">(<img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRJ4BoLZFg1mAOvtvw01bzYmQwmJU6bWxGuITcKEYlx4TTeujGSUyxhAchRhbdi8vVpSJD9QWAi4XnWYV21yCGuGQOnOnfWDvNOF0GljppfW_gkd1umoP_0CJUPH0ApsC12uQoeFEjIA/s320/Western+Blot+Lyme+Band+Chart.gif" width="237" /></a></div>
What do all the bands on my Western Blot Lyme Disease test mean? This is a question that came up recently and I was about to write out a long response to answer this person (their exact question was "Can I have Lyme with only ONE band of Lyme antibodies showing up? Her neurologist told her NO") So I was about to write out a whole essay on what the IgG and IgM antibodies are and what bands are specific for what, and so on, when I came across this wonderful blog called "Life with a Twist of Lyme". The author has a GREAT page that explains exactly what I would have written, so rather than re-invent the wheel, I'd like to direct you to her site (which I've also now included on the left side of my blog because I thought it was written so well). It's under the heading "What do all those bands on my Western Blot test mean?"<br />
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The site address is: <a href="http://lymetwistontherocks.blogspot.com/2011/01/western-blots-what-do-all-of-those-darn.html" target="_blank">Life with a Twist of Lyme</a> (A big THANK YOU to the author of this blog - you created a great site that is easy to understand for folks who are just learning about what all this means - like me in the very beginning - I was so overwhelmed with all this technical jargon that it took me a long time to figure out what it all meant. But you put together a great site which has some great information on it for people who are trying to interpret what their Western Blot tests mean!)<br />
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One of the segments I chose to re-post here I thought was especially relevant because this question comes up over and over again:<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiS5Wz7z39Ryzsb1VbSsoaPy3u-XNVn5sWGIc4OufnyXIyY7lkn-FDwNKRRCNXGRIgUJMbU5SR7b7Ml-SnJxEoooW_BsIRc-2M2FEBVPR1GVPphJp932JekTfuRyAmWD1znc8MaGRY0QA/s1600/blood+samples+picture.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiS5Wz7z39Ryzsb1VbSsoaPy3u-XNVn5sWGIc4OufnyXIyY7lkn-FDwNKRRCNXGRIgUJMbU5SR7b7Ml-SnJxEoooW_BsIRc-2M2FEBVPR1GVPphJp932JekTfuRyAmWD1znc8MaGRY0QA/s1600/blood+samples+picture.jpg" /></a><i><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;">IgM versus IgG is usually interpreted this way: if you have a positive IgM Western Blot, but negative IgG, it may mean that you just became infected fairly recently, because the IgM reaction to infection generally happens before the IgG. If you have a positive IgG it may mean an established, chronic infection.</span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;"><br /></span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;"><br /></span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;">OK, finally we need to talk about what POSITIVE means!</span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;"><br /></span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;"><br /></span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;">How does one decide what constitutes a positive Western Blot test? In some ways this seems like it would be a fairly easy question to answer, but when you realize that every person's body reacts differently to infection, and one immune system may not make the same antibodies that another immune system might make, then it becomes highly complicated.</span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;"><br /></span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;"><br /></span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;">In addition, to follow this discussion on all levels, you must realize that most doctors in the United States are NOT well-educated about Lyme disease. They generally believe that:</span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;"><br /></span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;"><br /></span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;">a) The CDC and the Infectious Disease Society of America (IDSA) are the ultimate authorities and that anyone who disagrees with them is a crackpot.</span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;"><br /></span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;">(b) Lyme disease is rare, hard to catch and easy to cure (this is the IDSA official "line" and it is WRONG!!!!!!).</span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;"><br /></span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;">(c) Lyme disease should be treated with 2 - 4 weeks of doxycycline and THAT'S IT! (IDSA guidelines again. This makes NO sense...there are many illnesses out there that have to be treated very aggressively for months and months.)</span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;"><b> </b></span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;"><br /></span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;"><br /></span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;"><b>Please understand that there is a political and economic battle being waged in this country with the health insurance companies and the IDSA on one side and many, many Lyme patients who are desperately ill on the other side.</b></span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;"> </span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;"> </span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;"><br /></span><span class="Apple-style-span" style="color: #cc0000; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif;"><span class="Apple-style-span" style="font-size: 15px; line-height: 20px;"></span></span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;"><br /></span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;">OK, here are three sets of Western Blot criteria for determining whether or not someone has Lyme disease; let's compare them:</span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;"><br /></span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;"><br /></span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;"><b>1. The <a href="http://www.cdc.gov/mmwr/preview/mmwrhtml/00038469.htm" style="color: #3c7ab5; text-decoration: none;">current CDC criteria</a></b></span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;"> </span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;">(used by the IDSA and health insurance companies) for a positive Western Blot are as follows:</span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;"><br /></span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;"><br /></span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;"> (a) For IgM, 2 of the following three bands have to be positive: OspC</span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;"><br /></span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;"> (22-25), 39 and 41.</span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;"><br /></span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;"> (b) For IgG, 5 of the following ten bands have to be positive: 18, OspC</span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;"><br /></span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;"> (22-25), 28, 30, 39, 41, 45, 58, 66 and 93. </span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;"> </span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;"><br /></span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;"><br /></span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;">I will not go into the ins and outs of how they came up with these criteria. You can look at the CDC website for that. Suffice it to say that when the CDC criteria were first created, they were</span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;"> </span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;"><b>not recommended for diagnostic purposes.</b></span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;"> In fact, there used to be a statement on the CDC website that said so. I think that statement has now been taken down in an attempt to appease the IDSA.</span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;"><b> </b></span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;"><br /></span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;"><br /></span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;"><b>2. </b></span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;"><b>The criteria used by IGeneX,</b></span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;"> </span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;">one of the top Lyme laboratories in the country: IGeneX considers a Western Blot (IgM or IgG) to be positive if just two or more of the following bands are positive: OspC (23-25), 31, 34, 39, 41, and 83-93.</span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;"> </span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;"><b> </b></span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;"><br /></span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;"><br /></span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;"><b>3. Possible future criteria in China:</b></span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;"> </span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;">I recently read an article about Lyme disease testing in China, where Lyme is spreading rapidly through the country. The researchers quoted by the article recommended considering a Western Blot positive if just ONE single Lyme-specific band was positive.</span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;"><br /></span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;"><br /></span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;">So the IDSA and the health insurance companies are in cahoots, but ILADS (the International Lyme and Associated Diseases Society) is</span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;"> </span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;"><b>opposed</b></span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;"> </span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;">to their anti-patient agenda and their highly restrictive and ridiculous diagnostic criteria for Lyme disease. Our heroes, the Lyme Literate doctors (aka LLMDs in the online Lyme communities) are generally member of ILADS and believe that the using the CDC WB criteria for diagnosis of Lyme disease is incorrect.</span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;"><br /></span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;"><br /></span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;">So what's so terrible about the CDC WB criteria anyway? For one thing they don't mention some of the bands which are the</span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;"> </span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;">most highly specific</span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;"> </span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;">for Lyme disease, namely bands 31 and 34, aka OspA and OspB. Your body can only produce these antibodies if you have been exposed to Lyme spirochetes!</span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;"><br /></span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;"><br /></span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;">The main reason these were left out is that several of the doctors who originally decided on the criteria were involved in an effort (at that time) to create a Lyme vaccine, and those two bands were part of the vaccine, so anyone who had been vaccinated against Lyme would test positive for 31 and 34</span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;"> </span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;">even if they did not have Lyme</span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;">. So they deleted those two bands from the list.</span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;"><br /></span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;"><br /></span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;"><b>However</b></span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;">, the Lyme vaccine is no longer being used because it caused terrible autoimmune reactions in a number of people who received it. But (oops!!) the CDC forgot to put those two bands back into the criteria after they stopped using the vaccine!</span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;"><br /></span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;"><br /></span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;">And requiring FIVE bands for an IgG to be positive? How do you know that everyone will produce a minimum of 5 different IgG antibodies? And why include bands 45, 58, and 66, which are not specific for Lyme disease? Why not include bands that are SPECIFIC for Lyme??? Clearly these criteria are too restrictive.</span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;"><br /></span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;"><br /></span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;">It has been said that the current CDC testing misses</span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;"> </span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;"><b>at least</b></span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;"> </span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;">half of those who truly have Lyme disease.</span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;"><br /></span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;"><br /></span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;">As to the IGeneX criteria, these make a lot more sense, as the only band in their set that is NOT Lyme-specific is band 41. Band 41 is usually the first band to show up for Lyme but also is frequently positive for people with other spirochetal infections such as syphilis and certain dental infections.</span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;"><br /></span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;"><br /></span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;">However, in my humble opinion, the proposed Chinese criteria make the most sense, since your body should not be able to produce even one single antibody to a Lyme spirochete unless you have been exposed to Lyme!</span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;"><br /></span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;"><br /></span><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;">In the opinion of many LLMDs, IGeneX is one of the best places to get a Western Blot done, as their testing is more sensitive and they also report the "indeterminate" results, which means that there was some sort of reaction there, but not a strong enough response to be considered positive. The indeterminate results can be considered clinically significant if a doctor wishes to include those.</span></i><br />
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<i><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;">*****************************************</span></i></div>
<i><span class="Apple-style-span" style="color: #5e5e5e; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;"><br /></span></i><br />
<span class="Apple-style-span" style="font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;">For additional information, I'd also like to include another site by Melissa Kaplan called <a href="http://www.anapsid.org/lyme/wb.html" target="_blank">Interpreting the IgG and IgM Western Blot for Lyme Disease</a>. This is another great site that includes all the bands and explains what they mean (similar to the blog above). </span><br />
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<span class="Apple-style-span" style="font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;"><span class="Apple-style-span" style="font-family: Times; font-size: small; line-height: normal;"><i><span class="Apple-style-span" style="color: #cc0000;"><span class="Apple-style-span" style="font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;">***(To understand why there is so much controversy over Lyme Disease, you need to watch</span><span class="Apple-style-span" style="font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;"> the highly acclaimed film: </span><span class="Apple-style-span" style="font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 15px; line-height: 20px;"><span class="Apple-style-span"><a href="http://www.underourskin.com/" target="_blank">Under Our Skin</a>. It will answer all your questions about why it is SO hard for patients suffering from Lyme to A) Get a proper Lyme test B) Get a diagnosis and C) Get proper treatment from a properly trained doctor. - Sandie)</span></span></span></i></span></span>Sandiehttp://www.blogger.com/profile/04238939507752991559noreply@blogger.com2tag:blogger.com,1999:blog-2364916966708215476.post-4856213013523674542012-07-30T03:34:00.000-07:002012-07-30T03:34:24.465-07:00My Plasma Donation for a Lyme Research Study<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihDxgDpSu7aJl1hTyMsHrOBFSa95_8ErkEX8OvYimrjiGCQ-iu0ooQi9OesWBH5z9uaFEsVE6uexYBa_Ed9uHbQykZ_IsTwtSJkFWIYrgpfNwP6n9qb6KF3Dqg7B0QOsrPfMufEw1iJQ/s1600/bonni+plasma+center2.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihDxgDpSu7aJl1hTyMsHrOBFSa95_8ErkEX8OvYimrjiGCQ-iu0ooQi9OesWBH5z9uaFEsVE6uexYBa_Ed9uHbQykZ_IsTwtSJkFWIYrgpfNwP6n9qb6KF3Dqg7B0QOsrPfMufEw1iJQ/s320/bonni+plasma+center2.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">See that yellow canister to the left? <br />Thats MY PLASMA! Already separated from my blood. </td></tr>
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Thought I would give you an update on things. I recently participated in a Research Study - This company is doing research on patients with Lupus, Hepatitis, other Diseases and ALSO Lyme Disease! I was given a full medical exam, my veins were checked (I have big juicy veins so thankfully it's never been a problem doing blood draws or having my IV antibiotic treatments) and was given the Green Light for the next step - to donate plasma. What an experience. It's sort of like kidney dialysis - you are hooked up to a machine, they take your blood out thru an IV, the machine separates the plasma, and then your blood is put BACK into you. The only "strange feeling" part was when they put some saline? back into me - it was freezing cold from the inside out. I could have had 10 blankets on top of me but it wouldn't have helped, because I was cold from the inside out! <div>
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Anyway, they also took blood to see if I have an IgM (current) Lyme infection versus an IgG (past exposure). Basically your antibodies will show a positive IgM if they are fighting a current infection. This is what the research scientists want to work with. They also want to look at my plasma and decide whether I'm a viable candidate for the study. I would be compensated for my plasma, so I'll find out in about a week if I "pass" the test.<div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgtzcudkHOMWMdBvhXlD2BkvqmnVnXrd75hFhWK3T91lTg_8WJSv54TBxAOicJd-ZBBZKEeSXnYpGQv95oby2_FmtZ5lcXLw9adRgS7eQhGuf0RxSoe49iShapfzbDZ6Tax-16zNrFMHQ/s1600/bonni+plasma+ctr+1.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgtzcudkHOMWMdBvhXlD2BkvqmnVnXrd75hFhWK3T91lTg_8WJSv54TBxAOicJd-ZBBZKEeSXnYpGQv95oby2_FmtZ5lcXLw9adRgS7eQhGuf0RxSoe49iShapfzbDZ6Tax-16zNrFMHQ/s320/bonni+plasma+ctr+1.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My very nice tech looking on - she was quite good and I barely<br />felt the needle going in! That's the sign of a good tech!</td></tr>
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I'm including some pictures I had the rep take of me - I know, I look awfully CHIPPER in these photos - but that's just me. I just had a thought - they should use my pictures in their brochures since I look so HAPPY!Maybe it would make people feel less anxious about going thru this process! (smile) Hmmm...I should tell them about this great idea of mine! :)</div>
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(Also....Some patients DO report a "Euphoric" feeling when they donate plasma - maybe that's why I'm so "happy" looking! </div>
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Will keep you posted - I DO hope that I'm a viable candidate - this would be a great way to help other Lyme patients if I could participate in this study. </div>
</div>Sandiehttp://www.blogger.com/profile/04238939507752991559noreply@blogger.com0tag:blogger.com,1999:blog-2364916966708215476.post-82065902501332596432012-07-24T18:51:00.000-07:002012-07-30T03:43:28.584-07:00New York Times Article: When Lyme invades the brain and spinal system<i><span class="Apple-style-span" style="color: red;">Please note: This article is over 15 years old, but I found it quite interesting and wanted to share this on my blog. I was recently told I have spinal stenosis (my Lyme arthritis symptoms are worsening 2 years and 6 months later) and I came across this article under the search "Lyme and Spinal Stenosis" </span></i><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXQQnejPmbSXKtYfcC22p1rT-gQViCH9bIHrwfUnGYYGHE-f2NPqXgB2iI3lhgeRPUwOQWutBk-d2txFz8ZgwvqiKZFW_XYW_Bf3sysQxxg3af_47sI_NidWZKttL9L1uCZhBNCy4g5A/s1600/spinal+cord.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXQQnejPmbSXKtYfcC22p1rT-gQViCH9bIHrwfUnGYYGHE-f2NPqXgB2iI3lhgeRPUwOQWutBk-d2txFz8ZgwvqiKZFW_XYW_Bf3sysQxxg3af_47sI_NidWZKttL9L1uCZhBNCy4g5A/s1600/spinal+cord.jpg" /></a><br />
<span class="Apple-style-span" style="color: #333333; font-family: georgia, 'times new roman', times, serif; font-size: 11px; line-height: 16px;"><a href="http://www.nytimes.com/" style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; color: #004276; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-decoration: underline;"><img alt="New York Times" id="NYTLogo" src="http://i1.nyt.com/images/misc/nytlogo152x23.gif" style="border-bottom-style: none; border-bottom-width: 0px; border-color: initial; border-color: initial; border-left-style: none; border-left-width: 0px; border-right-style: none; border-right-width: 0px; border-style: initial; border-top-style: none; border-top-width: 0px; border-width: initial; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;" /></a></span><span class="Apple-style-span" style="font-family: Georgia; font-size: 12px; line-height: 17px;"></span><br />
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<h1 style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; color: black; font-family: inherit; font-size: 24px; font-weight: normal; line-height: 26px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;">
Personal Health; When Lyme invades the brain and spinal system.</h1>
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<div class="mod-nytimesarticlebyline mod-articlebyline" id="mod-article-byline" style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; color: grey; font-family: arial; font-size: 10px; line-height: 12px; margin-bottom: 10px; margin-left: 0px; margin-right: 0px; margin-top: 15px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;">
<span style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; color: grey; font-family: arial; font-size: 10px; line-height: 12px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;">By Jane E. Brody</span><br />
<span class="pubdate" style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; color: grey; font-family: arial; font-size: 10px; line-height: 12px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;">Published: February 15, 1995</span></div>
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<strong style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; color: black; font-family: inherit; font-size: 15px; line-height: 22px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"></strong>A YOUNG woman, whose doctor declined to identify her, thought she was going crazy. Suddenly, this once perfectly healthy college freshman developed severe anxiety, panic attacks, insomnia and loss of appetite.</div>
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A doctor and a psychologist at her college's health service recommended rest for what they thought were problems in adjusting to being away from home. Forced to take a medical leave, she underwent an extensive examination that showed no abnormalities except one: evidence in her spinal fluid of infection by the spirochete Borrelia burgdorferi, which causes Lyme disease. Only then did she recall having had a circular rash characteristic of Lyme disease months earlier, followed by a brief bout of headaches and unusual fatigue. At the time, she did not take these symptoms seriously and did not seek medical attention.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYAqau-exhu7bSyYej6VL_uBpEGyZWM-iDV5nA8GYtQxdPwSVtJK2JWLfit0OnKSVz7eR-PJhU0AdE_0e6dTylbk1c-y5mUYk7NUJhnjdC2S18Yu2jDK4yN-vF7oW6IkKei3tsUOCpGg/s1600/depression.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYAqau-exhu7bSyYej6VL_uBpEGyZWM-iDV5nA8GYtQxdPwSVtJK2JWLfit0OnKSVz7eR-PJhU0AdE_0e6dTylbk1c-y5mUYk7NUJhnjdC2S18Yu2jDK4yN-vF7oW6IkKei3tsUOCpGg/s1600/depression.jpg" /></a></div>
The young woman's case is among dozens reported in which the Lyme spirochete was the apparent cause of a wide range of psychiatric and neurological problems. Three months after receiving a six-week course of intravenous antibiotics to eradicate the spirochete, the woman felt better. But a year later more therapy was needed when the anxiety and panic attacks returned, along with musical hallucinations, deja vu experiences and obsessional thoughts.<span class="Apple-style-span" style="font-size: 12px; line-height: 1px;"><img alt="" height="1" src="http://nytimes.perfectmarket.com/pm/images/pixel.gif" style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; color: black; font-family: inherit; font-size: 12px; line-height: 17px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;" width="1" /></span></div>
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Although such extreme cases are rare, neurological problems resulting from Lyme disease are more common than realized by most doctors, who tend to look for the more characteristic arthritic conditions associated with the disease. Nervous System Attack</div>
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When Lyme disease is promptly recognized and properly treated, the overwhelming majority of patients recover uneventfully. But often the initial sign of a bite by a Lyme-infected tick, a red circular rash that clears in the center, is not recognized. Only when more severe symptoms develop weeks or months later are a diagnosis and treatment pursued.</div>
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Meanwhile, within weeks of entering the body, the spirochete, a bacterium that resembles the organism that causes syphilis, can invade the brain and spinal cord. At first, patients may develop meningitis, encephalitis or problems like pain or loss of sensation stemming from an attack on the nerves that emanate from the brain or spinal cord. But as with syphilis, months or years may pass before the late signs of a neurological infection appear.</div>
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Once inside the central nervous system, the organism can wreak all kinds of havoc, from memory problems, moodiness and depression to hallucinations, panic attacks, paranoia, manic depression, seizures and even dementia. Memory problems are the most common sign of a brain infection. When the organism invades spinal nerves, patients may develop numbness and tingling in fingers and toes and pain radiating to the front of the body.</div>
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In rare cases, the spirochete may mount an attack on the protective sheath of nerves, resulting in spastic muscle weakness in the extremities that resembles multiple sclerosis, said Dr. Allen C. Steere of Tufts-New England Medical Center in Boston. Dr. Steere first recognized Lyme disease as a distinct disorder in 1975 and soon realized that it could cause neurological problems.</div>
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Dr. Brian Fallon, a psychiatrist at the State Psychiatric Institute in New York, recently reviewed the neuropsychiatric aspects of Lyme disease in The American Journal of Psychiatry, in the hope of prompting his colleagues to consider the possibility of this infection when examining patients who might have been exposed to Lyme-infected ticks.</div>
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In Europe, where the disease is called borreliosis, patients commonly develop neuropsychiatric symptoms after being infected by the same spirochete that causes Lyme disease, Dr. Fallon said. But in this country, arthritic symptoms are most common and many doctors still do not appreciate the threat to the nervous system.</div>
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Dr. Fallon said that up to 40 percent of patients with Lyme disease developed some involvement of the nervous system affecting either the extremities or the central nervous system. He told of a 47-year-old man who experienced depression and memory problems as his main signs of Lyme disease, symptoms that responded well to intravenous antibiotics. The symptoms recurred five months later, but he was not treated a second time. He developed a type of dementia that required hospitalization and died a few years later. An autopsy found Lyme spirochetes in a degenerated part of his brain.</div>
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Children can also develop a neurological form of Lyme disease that often shows up as behavioral or emotional disturbances. Such children may become moody, lose interest in play and do poorly in school. Among 16 children in Westchester County, N.Y., who contracted Lyme disease, 15 whose infections were identified and treated within the first month were doing very well, Dr. Fallon said. But one child, in whom the disease was not diagnosed until four months after he was thought to have been infected, has suffered for five years with arthritis, headaches, depression and memory problems.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi13JYUM3N-0ZBbcqxuA85BnvYNtwqtdOpS4juHmEGscZPWyOeZyiAfa00XDgxKTnsC9hAX0-frRmU8Ec5ksj7EWdSxFELYg5C5snj8GkweGMOxryEqZYrkTphUGVKOI3q_ILxaXOj5NA/s1600/spinal+cord+pic+.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi13JYUM3N-0ZBbcqxuA85BnvYNtwqtdOpS4juHmEGscZPWyOeZyiAfa00XDgxKTnsC9hAX0-frRmU8Ec5ksj7EWdSxFELYg5C5snj8GkweGMOxryEqZYrkTphUGVKOI3q_ILxaXOj5NA/s1600/spinal+cord+pic+.jpg" /></a>Studies by Dr. Steere and others of patients with neurological signs of Lyme disease have revealed inadequate blood flow through particular areas of the brain. Dr. Steere also said that after an attack of Lyme disease, patients might develop pain or fatigue syndromes that resemble fibromyalgia or chronic fatigue syndrome. Diagnosis Problems</div>
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To be sure, extreme incapacitating effects of a Lyme infection are rare. But even the more subtle effects like depressed mood, memory problems and word-finding difficulties can be devastating to those who are afflicted.</div>
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Such patients commonly receive the wrong diagnosis or inappropriate treatment. Often they are shunted from one doctor to another. In addition to blood tests for antibodies to the spirochete, diagnosis of neurological Lyme disease may require a spinal tap, an electroencephalogram (EEG), magnetic resonance imaging (M.R.I.), standard neuropsychological tests (for example, for memory, word association and depression) and a carefully taken health history.</div>
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Even after a correct diagnosis is made and a long course of intravenous antibiotics is administered, the organism may not be eradicated from its sanctuary in the brain. Repeated courses of this costly therapy are typically needed, but many insurance companies balk at paying for them because the treatments are still considered experimental.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiW-aU1OXQ5yD98FqpDScGYON-celzvHQ5Khg2AiZPmsHgIrZfWvpAEn8ssqd0NWxkbBqss_-hDBzOGmDMdT3kCQBkTfzp0RNiK1RXk6DQwTFLYAy6ECQLEatjh4UOs1UA_aJn0zMFjLg/s1600/Rocephin.tiff" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="236" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiW-aU1OXQ5yD98FqpDScGYON-celzvHQ5Khg2AiZPmsHgIrZfWvpAEn8ssqd0NWxkbBqss_-hDBzOGmDMdT3kCQBkTfzp0RNiK1RXk6DQwTFLYAy6ECQLEatjh4UOs1UA_aJn0zMFjLg/s320/Rocephin.tiff" width="320" /></a></div>
Sometimes the treatment itself can cause a flare-up of Lyme disease, producing both physical and neuropsychiatric symptoms. But most often, when the presence of a Lyme infection can be established, treatment with intravenous antibiotics for four to six weeks results in a distinct improvement. But Dr. Steere, who uses ceftriaxone, which is sold as Rocephin, noted that patients typically must wait three to six months to see signs of gradual improvement and may never recover 100 percent.</div>
</div>Sandiehttp://www.blogger.com/profile/04238939507752991559noreply@blogger.com0tag:blogger.com,1999:blog-2364916966708215476.post-16236475389185985772012-07-15T17:06:00.002-07:002012-07-15T17:06:32.042-07:00<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgTZJ8PAzGv2Sks-_jA88B8dWZWApvXbCNM9MSTFEv_4GdKxa8KhWoDGbXXcs_M0NAtwl0xy8itcyR7ylY3newXWvrbrJonFbcNYCxSivkv1Ac6s2UmCs2S8omet_RxYP0uOGyibUksjA/s1600/lyme+tap+pic.png" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgTZJ8PAzGv2Sks-_jA88B8dWZWApvXbCNM9MSTFEv_4GdKxa8KhWoDGbXXcs_M0NAtwl0xy8itcyR7ylY3newXWvrbrJonFbcNYCxSivkv1Ac6s2UmCs2S8omet_RxYP0uOGyibUksjA/s1600/lyme+tap+pic.png" /></a></div>
<b><span class="Apple-style-span" style="font-size: large;">Great news!</span></b><br />
<b>LymeTap</b> is once again accepting applications for reimbursement of Lyme Tests up to 75% if you meet eligibility requirements. For more information and to download their application, go to: <a href="http://www.lymetap.com/" target="_blank">Lyme Tap Site</a><br />
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(www.lymetap.com)<br />
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<br />Sandiehttp://www.blogger.com/profile/04238939507752991559noreply@blogger.com0tag:blogger.com,1999:blog-2364916966708215476.post-12595968055445825222012-07-15T16:33:00.002-07:002012-07-15T16:33:35.990-07:00Lyme Victims Depend on Each Other (Martha's Vineyard Support Group)<span class="Apple-style-span" style="color: #474949; font-family: 'Times New Roman', serif; font-size: 21px; font-weight: bold; line-height: 25px; text-transform: uppercase;">LYME VICTIMS DEPEND ON <span style="white-space: nowrap;">EACH OTHER</span></span><span class="Apple-style-span" style="color: #474949; font-family: 'Times New Roman', serif; font-size: 17px; line-height: 24px;"></span><br />
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By OLIVIA HULL</div>
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<a href="http://www.mvgazette.com/buy_photo.php?16048" title=""><img alt="support group " src="http://www.mvgazette.com/images/photocache/img/12615.jpg" style="border-bottom-color: rgb(0, 0, 0); border-bottom-style: solid; border-bottom-width: 1px; border-left-color: rgb(0, 0, 0); border-left-style: solid; border-left-width: 1px; border-right-color: rgb(0, 0, 0); border-right-style: solid; border-right-width: 1px; border-top-color: rgb(0, 0, 0); border-top-style: solid; border-top-width: 1px; margin-bottom: 3px;" width="575" /></a><br />Lyme disease support group offers sympathetic ears and educated referrals to doctors.</div>
Kristen Kusama-Hinte arrived on-Island in early June. A couple of weeks later, her son had a fever. She tended to him, sleeping on the floor by his side. She checked her own and discovered a 100-degree temperature and didn’t pay much attention. She got a stiff neck and again didn’t pay much heed. When a terrible headache hit, she knew something was wrong.<br />
She thought she was being assaulted by a horrific flu, until part of her face became paralyzed. “I was completely immobile,” she recalled. “All I could do was moan and groan.” The pain, she said, was worse than two bouts of natural home births. When she noticed a small rash on her arm, she finally went to the clinic and was diagnosed with acute Lyme disease. She was treated with the antibiotic Doxycycline, and symptoms subsided, but her doctor wouldn’t answer her most pressing question, “Am I cured?” “She kept saying, ‘You got the Lyme and you’re treating it,’” she said. “I wanted to know I was not dealing with a chronic disease.”<br />
There is a continuing debate over the existence of chronic Lyme. But people like Sue Rhuby of West Tisbury say it is real, something they live with every day. Ms. Rhuby is a member of the Lyme Disease Support Group on the Vineyard. She was first diagnosed with chronic Lyme in 2010, but she had been feeling its effects for seven years. In the meantime, amidst a host of aches and pains, including a “chisel in my back” feeling that caused her to visit the chiropractor three times a week, sometimes three times a day, she was diagnosed with lupus. But she’s now confident she’d been suffering from Lyme all along. In the absence of doctors with answers, she has taken responsibility for her own health. “You have to educate yourself about the problem you have,” she said. “It’s your body, and you know your body best.”<br />
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<a href="http://www.mvgazette.com/buy_photo.php?16049" title=""><img alt="Enid haller " src="http://www.mvgazette.com/images/photocache/img/12616.jpg" style="border-bottom-color: rgb(0, 0, 0); border-bottom-style: solid; border-bottom-width: 1px; border-left-color: rgb(0, 0, 0); border-left-style: solid; border-left-width: 1px; border-right-color: rgb(0, 0, 0); border-right-style: solid; border-right-width: 1px; border-top-color: rgb(0, 0, 0); border-top-style: solid; border-top-width: 1px; margin-bottom: 3px;" width="250" /></a><br />Phoenix Becker is an organizer of the support group.</div>
The support group, headed by Enid Haller, a PhD in clinical psychology, provides information and emotional support to its 150 members. For most, after experiencing the effects of a particularly isolating disease, the support group helps them feel heard.<br />
“I think it feels really good for people to talk to other members of the group and feel heard,” said Phoenix Becker, one of the support group’s organizers.<br />
As group members told their stories Wednesday night in West Tisbury, their voices were met with understanding groans of solidarity. They discussed doctors, treatments, anxiety, depression, misdiagnosis. “I feel like I have been run over by a fatigue bus,” a woman from Danvers said, and everyone agreed it’s a good way to put it. As Nick entered the room, he dragged his feet. “I’m doing the Lyme shuffle,” he said, and everyone laughed. The crocs, work boots, hiking boots, Tevas and leather sandals identify them as people from different sectors of society — but the isolating experiences they’ve shared bring them together. They agree on many things—that pain is worst in the morning, for example. But they disagree over whether it’s okay to resort to painkillers. They avoid hospital-bashing for the most part, but sometimes they can’t resist: They feel ignored and unheard by the medical establishment.<br />
Twenty-one members came to the meeting. The group functions much like a referral service. A new group member presents her case, eliciting audible compassion of the people sitting around her, and Ms. Haller suggests a next step. She’s done her research, aided by Ms. Becker, so rarely does a treatment come up that she hasn’t heard of. She keeps a short list of doctors whom she refers to as “Lyme-literate”—the majority of whom do not accept standard insurance plans, but against the doctors who take advantage of people’s desperation. “I don’t mean to call them quacks or whatever,” she said. “But it’s important for people to hear in the group that you have to be careful. Some charge a lot of money.”<br />
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<a href="http://www.mvgazette.com/buy_photo.php?16051" title=""><img alt="Sam Hiser " src="http://www.mvgazette.com/images/photocache/img/12617.jpg" style="border-bottom-color: rgb(0, 0, 0); border-bottom-style: solid; border-bottom-width: 1px; border-left-color: rgb(0, 0, 0); border-left-style: solid; border-left-width: 1px; border-right-color: rgb(0, 0, 0); border-right-style: solid; border-right-width: 1px; border-top-color: rgb(0, 0, 0); border-top-style: solid; border-top-width: 1px; margin-bottom: 3px;" width="250" /></a><br />Sam Hiser.</div>
But Ms. Haller also acknowledges that some treatments work for some people and not others. Her endorsements are based on the personal experiences of support group members. “We have taken it into our own hands to find our way through the medical system,” she says. Ms. Haller also offers to look at group members’ test results, because she believes some doctors aren’t adequately equipped to read the tests.<br />
Many support group members’ mistrust in medical doctors has prompted them to take on their own illness. Some say they feel they are being forced to doubt their perception of their body. John Casey, of Oak Bluffs, has experienced intense cramping in his hands and feet, joint soreness, and short-term memory loss, among other symptoms, for more than a decade. He saw many doctors over the years, but said none had a clear idea of what caused his pain. One diagnosed him with psychosomatic illness, another said it was fibromyalgia. Finally, he said, they just treated him for the pain. He took vicodin, oxycontin and oxycodon, and finally, methadone. But everything changed when he met Ms. Haller. “In about seven minutes of talking to Enid, she said, ‘John, you probably have Lyme,’” he recalled. “That’s how quickly she got to the heart of it.” He sent for the $470 panel Igenex test and it came back positive for Lyme. After several months of antibiotics, a recent relapse caused him to seek other options. He now takes carnivora, a Venus flytrap extract that is intended to excite the immune system. But he’s still in pain, and still relies on methadone to lead a normal life. When he wakes up, his entire body is in pain, he said.<br />
Ms. Becker got sick with what she suspects is Lyme when she was eight years old, in August of 1988. As a child growing up on the Island, she enjoyed playing in the woods and picking wild blueberries. But when she got sick, she stopped participating in after-school sports, due to fatigue, and was taunted by friends. People also criticized her parents, blaming them for Phoenix’s condition.<br />
She struggled for two decades to get a diagnosis that fit her symptoms. “It seemed like every doctor I saw didn’t think there was anything wrong with me,” she said. For a while, doctors insisted she had rheumatoid arthritis, but every test she took came back negative. Doctors also suggested it might be multiple sclerosis, or blamed symptoms on her Type 1 diabetes. Now she sees a neurologist who treats what the doctor calls Lyme with an extended regimen of intravenous antibiotics — she’s been on Rocephin for over a year. “Within a couple of days of starting it, my family could really tell a difference in me,” she said. “I was speaking a lot faster and my gait really improved.”<br />
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<a href="http://www.mvgazette.com/buy_photo.php?16050" title=""><img alt="Jay Boden " src="http://www.mvgazette.com/images/photocache/img/12618.jpg" style="border-bottom-color: rgb(0, 0, 0); border-bottom-style: solid; border-bottom-width: 1px; border-left-color: rgb(0, 0, 0); border-left-style: solid; border-left-width: 1px; border-right-color: rgb(0, 0, 0); border-right-style: solid; border-right-width: 1px; border-top-color: rgb(0, 0, 0); border-top-style: solid; border-top-width: 1px; margin-bottom: 3px;" width="300" /></a><br />Jay Boden.</div>
Due to its prevalence on the Island, many of those who believe they suffer from lasting effects of a tick bite say that Islanders’ (and visitors’) approach to Lyme must change. “It requires a real shift in thinking,” Ms. Becker said. “A lot of people think they love nature, want to spend time in nature, feel like nature would never hurt them. When they get bitten by a tick, it really shakes their reality.”<br />
Much of the information shared at the support group regards preventative measures. They discuss strategies like putting up mesh fencing to enclose their yards, using DEET and keeping their lawn mowed. “I don’t care what they spray,” said a man whose biggest concern is protecting his three-year-old daughter. “It could be agent orange,” he said, as long as it protects his family against Lyme.<br />
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But even after dealing with what they think is Lyme for decades, patients like Ms. Becker remain hopeful about their prognosis.<br />
“It’s important for people to know that they can get better from Lyme,” said Ms. Becker. “A lot of people give up on getting better but it takes patience and persistence to get better. It can take a couple of years of treatment to make a full recovery.”<br />
“Everyone thinks we’re nuts, by the way,” Ms. Haller said, nearing the end of the three hour meeting. “I prefer to say we think out of the box.”<br />
The Lyme Disease Support Group is held at Howes House in West Tisbury at 6:30 p.m. on the first Wednesday of each month.<br />
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Full article can be found at: <a href="http://www.mvgazette.com/article.php?36064" target="_blank">Martha's Vineyard Gazette - Lyme Support group article </a><br />
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<br /></div>Sandiehttp://www.blogger.com/profile/04238939507752991559noreply@blogger.com0tag:blogger.com,1999:blog-2364916966708215476.post-32028593628037956082012-07-09T16:36:00.002-07:002012-07-09T17:24:49.039-07:00How to Deal with Candida OR Lyme Toxin Die-Off<br />
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What is Candida Die-Off?</h2>
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<span class="Apple-style-span" style="color: #cc0000;"><i>Note: Some of these I've tried, and some of them I haven't. I've tried to put my own little notes next to the ones that I think are the best! - B) </i></span></div>
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<span class="Apple-style-span" style="color: #cc0000;"><i><br /></i></span></div>
<ul class="bullet" style="color: #333333; font-family: Geneva, Arial, Helvetica; font-size: 18px; list-style-image: url(http://www.thecandidadiet.com/images/bullet-square.jpg); list-style-position: outside; list-style-type: none; margin-bottom: 0.4em; margin-left: 0.2em; margin-right: 0.2em; margin-top: 0.4em; padding-bottom: 0px; padding-left: 35px; padding-right: 0px; padding-top: 0px;">
<li style="font-size: 0.8em; margin-bottom: 0.2em; margin-left: 0.2em; margin-right: 0.2em; margin-top: 0.2em;"><a href="http://www.thecandidadiet.com/candida-die-off.htm" style="color: #224400; font-weight: 100; text-decoration: underline;">What is Die-Off?</a><br />Learn how your Candida treatment could result in a Die-Off reaction, and how to recognize the symptoms of Candida Die-Off.</li>
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Supplements to help with Die-Off</h2>
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<li style="color: #333333; font-size: 0.8em; margin-bottom: 0.2em; margin-left: 0.2em; margin-right: 0.2em; margin-top: 0.2em;"><a href="http://www.thecandidadiet.com/vitamin-c.htm" style="color: #224400; font-weight: 100; text-decoration: underline;">Vitamin C</a><br />Vitamin C (ascorbic acid) restores your adrenal function and helps to boost your immune system.</li>
<li style="font-size: 0.8em; margin-bottom: 0.2em; margin-left: 0.2em; margin-right: 0.2em; margin-top: 0.2em;"><a href="http://www.thecandidadiet.com/milk-thistle.htm" style="color: #224400; font-weight: 100; text-decoration: underline;">Milk Thistle</a><br /><span class="Apple-style-span" style="color: #333333;">This herb contains a compound that helps to repair damaged liver cells and protect them from the toxins released in Die-Off. </span><span class="Apple-style-span" style="color: red;"><i><b>(This is one of the supplements I would recommend more than anything else. It helps your liver process toxins (because remember, EVERYTHING has to go thru your liver first! - I take Milk Thistle EVERY DAY! - B) </b></i></span></li>
<li style="font-size: 0.8em; margin-bottom: 0.2em; margin-left: 0.2em; margin-right: 0.2em; margin-top: 0.2em;"><span class="Apple-style-span" style="color: #333333;"><a href="http://www.thecandidadiet.com/swedish-bitters.htm" style="color: #224400; font-weight: 100; text-decoration: underline;">Swedish Bitters</a><br />Swedish Bitters are an excellent digestive support. They also help to regulate your stomach acidity and support your liver function. </span><span class="Apple-style-span" style="color: red;"><i>(Have actually never tried these so let me know if they work! - B) </i></span></li>
<li style="color: #333333; font-size: 0.8em; margin-bottom: 0.2em; margin-left: 0.2em; margin-right: 0.2em; margin-top: 0.2em;"><a href="http://www.thecandidadiet.com/detox-drops.htm" style="color: #224400; font-weight: 100; text-decoration: underline;">Detox Drops</a><br />Detox Drops is a supplement that promotes the healthy functioning of your liver and the elimination of toxins from your body.</li>
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Other ways to reduce your Die-Off symptoms</h2>
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<li style="color: #333333; font-size: 0.8em; margin-bottom: 0.2em; margin-left: 0.2em; margin-right: 0.2em; margin-top: 0.2em;"><a href="http://www.thecandidadiet.com/alternative-detox.htm" style="color: #224400; font-weight: 100; text-decoration: underline;">Alternative Detox Methods</a><br />This page summarizes the different alternative detox methods that you can try. The pages below go into more detail.</li>
<li style="font-size: 0.8em; margin-bottom: 0.2em; margin-left: 0.2em; margin-right: 0.2em; margin-top: 0.2em;"><span class="Apple-style-span" style="color: #333333;"><a href="http://www.thecandidadiet.com/skin-brushing.htm" style="color: #224400; font-weight: 100; text-decoration: underline;">Skin Brushing</a><br />Your skin is responsible for up to 15% of toxin elimination. Skin brushing enhances this process and improves your circulation too. </span><span class="Apple-style-span" style="color: #cc0000;">(I HIGHLY recommend this method of detoxing - I've done this myself and it really DOES work! - B) </span></li>
<li style="font-size: 0.8em; margin-bottom: 0.2em; margin-left: 0.2em; margin-right: 0.2em; margin-top: 0.2em;"><a href="http://www.thecandidadiet.com/contrast-showers.htm" style="color: #224400; font-weight: 100; text-decoration: underline;">Contrast showers</a><br /><span class="Apple-style-span" style="color: #333333;">Contrast showers boost your lymphatic system and improve your circulation. They have long been used as an alternative remedy for the common cold. </span><i><span class="Apple-style-span" style="color: #cc0000;">(Note: I'm not familiar with contrast showers so when I try it out, I'll give you my opinion! - B)</span></i><span class="Apple-style-span" style="color: #333333;"> </span></li>
<li style="color: #333333; font-size: 0.8em; margin-bottom: 0.2em; margin-left: 0.2em; margin-right: 0.2em; margin-top: 0.2em;"><a href="http://www.thecandidadiet.com/exercise-and-candida.htm" style="color: #224400; font-weight: 100; text-decoration: underline;">Exercise and Candida</a><br />The right amount of exercise can improve your body's defenses against Candida. Don't over-do it though as this can weaken your adrenals.</li>
<li style="font-size: 0.8em; margin-bottom: 0.2em; margin-left: 0.2em; margin-right: 0.2em; margin-top: 0.2em;"><span class="Apple-style-span" style="color: #333333;"><b>Rebounding (aka Mini Trampolines)</b> - </span><span class="Apple-style-span" style="color: red;"><i>This is an excellent way to get your lymphatic system pumping - An interesting thing I learned about this. Your blood is pumped thru your body through that wonderful organ called your HEART, unfortunately, the lymphatic system doesn't HAVE a pump - so it relies on YOU to exercise, preferably in an up and down movement like on a mini trampoline (aka rebounding) - or you could go up and down the stairs if you are able to! -B) </i></span></li>
<li style="font-size: 0.8em; margin-bottom: 0.2em; margin-left: 0.2em; margin-right: 0.2em; margin-top: 0.2em;"><a href="http://www.thecandidadiet.com/sauna-for-candida.htm" style="color: #224400; font-weight: 100; text-decoration: underline;">Sauna</a><br /><span class="Apple-style-span" style="color: #333333;">Sauna improves circulation and helps you flush out toxins through sweating. This page tells you what type of sauna works best. </span><i><span class="Apple-style-span" style="color: #cc0000;">(Note: Infrared (FIR) Saunas are one of the BEST ways to detox and you can buy a portable one for as little as $180. I have one and it helps you work up a sweat using dry heat versus a traditional steam sauna - B) </span></i></li>
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<span class="Apple-style-span" style="color: #cc0000; font-family: Geneva, Arial, Helvetica;"><span class="Apple-style-span" style="font-size: 14px;"><i><br /></i></span></span></div>
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<span class="Apple-style-span" style="color: #cc0000; font-family: Geneva, Arial, Helvetica;"><span class="Apple-style-span" style="font-size: 14px;"><i>Also: Just a few things that my Lyme friends have learned thru trial and error - the following items can help take the edge off when your body is "Herxing" - when you have toxins being released thru your body, it can make you feel REALLY sick! For some reason, don't ask me why, <b>Alka Seltzer Gold and/or Benadryl </b>can take the edge off when you're feeling the effects of bacterial load die off. I always keep some on hand! </i></span></span></div>
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<span class="Apple-style-span" style="color: #cc0000; font-family: Geneva, Arial, Helvetica;"><span class="Apple-style-span" style="font-size: 14px;"><i><br /></i></span></span></div>
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<span class="Apple-style-span" style="color: #cc0000; font-family: Geneva, Arial, Helvetica;"><span class="Apple-style-span" style="font-size: 14px;"><i>Also - the article above did not mention <b>EPSOM SALT BATHS. </b>If you're up to it (sometimes I'm just too tired to do it! but if you CAN, it can REALLY help draw out toxins from your body. You can buy a big bag of Epsom Salts at a drugstore like CVS for less than 10$ - B) </i></span></span></div>Sandiehttp://www.blogger.com/profile/04238939507752991559noreply@blogger.com2tag:blogger.com,1999:blog-2364916966708215476.post-29154672466435728502012-07-09T02:29:00.001-07:002012-07-09T02:29:46.778-07:00What is Lyme? Where to Start for Newbies<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKw66uTpBqfSWJTptv1oXYFx_a0Tn6H1lDk28XQ0fTHjAvc9iwvH7y2kW9Z7-pOyPmudl8A82pG7lrC-yyKM4jqcEofF7_YAR5XTcMWH3NL9YRo5Oi2Zi0nDIUFXVb4DBDERegJJr4qQ/s1600/What+is+Lyme+logo.png" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="28" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKw66uTpBqfSWJTptv1oXYFx_a0Tn6H1lDk28XQ0fTHjAvc9iwvH7y2kW9Z7-pOyPmudl8A82pG7lrC-yyKM4jqcEofF7_YAR5XTcMWH3NL9YRo5Oi2Zi0nDIUFXVb4DBDERegJJr4qQ/s320/What+is+Lyme+logo.png" width="320" /></a></div>
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Just wanted to share this link with anyone who has been newly diagnosed with Lyme Disease or thinks that they may have LD. There is a wealth of information on this site - they do a great job in posting some great resources for Lyme patients. This page in particular is good for people who are just starting out and need to know "Where do I start"? </span><br />
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<a href="http://whatislyme.com/where-to-start-lyme-info-for-newbies/"><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">http://whatislyme.com/where-to-start-lyme-info-for-newbies/</span></a><br />
<br />Sandiehttp://www.blogger.com/profile/04238939507752991559noreply@blogger.com0tag:blogger.com,1999:blog-2364916966708215476.post-16456788396563449282012-06-03T00:46:00.001-07:002012-06-03T00:46:25.926-07:00Lyme and Co-Infection Symptom ChartJust wanted to add a link to this chart. It's really well done and lists all the various symptoms of Lyme as WELL as all the various co-infections from TBD (Tick Borne Diseases). Go to: <a href="http://www.lyme-symptoms.com/LymeCoinfectionChart.html">http://www.lyme-symptoms.com/LymeCoinfectionChart.html</a>Sandiehttp://www.blogger.com/profile/04238939507752991559noreply@blogger.com0tag:blogger.com,1999:blog-2364916966708215476.post-53505993423877514632012-06-03T00:13:00.000-07:002012-06-03T00:47:11.490-07:00Personal update: June 3, 2012<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiAJlsAeJqczKToYDnUcoXhBr7NBxW7WpTNMWLI2XYOLY9l7BZBrF8N9HLFPBEPwVcU-CrARsJIFUQEogk64xJEB-xdfHU8MnlL1MjkzKUC6tXZ-0AoYKyftyn4I0Q4o-C5QYbF-Pnnvg/s1600/me+with+IV.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiAJlsAeJqczKToYDnUcoXhBr7NBxW7WpTNMWLI2XYOLY9l7BZBrF8N9HLFPBEPwVcU-CrARsJIFUQEogk64xJEB-xdfHU8MnlL1MjkzKUC6tXZ-0AoYKyftyn4I0Q4o-C5QYbF-Pnnvg/s320/me+with+IV.jpg" width="320" /></a><span class="Apple-style-span" style="-webkit-text-decorations-in-effect: none; color: black;">Hi all, it's been a while since I've updated my own personal story. I'm on my second round of IV antibiotics and am around Month 4. I will see my LLMD next week, to find out how much longer he wants me to keep going, it's possible I may have to go 6 to 9 months this time. The first round of IV abx, I was on for 4 months and elected to take a 2 month break. Within a few weeks, I started to backslide quickly and my symptoms all came back with a vengeance. The worst symptom I had when I started my first round of IV Rocephin was incredibly severe nerve pain. The standard pain chart is 1-10. Mine felt like a 20. I was so miserable. I went to neurologists, orthopedic doctors, NO ONE could help me with the pain. My legs were also getting weaker and weaker and I literally was starting to look at wheelchairs online. (I was already using a walker to get around - named "Pink Floyd"!) I had been seeing another doctor who had me on oral antibiotics for a year, but nothing was happening. I saw no improvement and in FACT, was getting worse - mostly my Neuro symptoms. I had brain fog, trouble with word recall, memory loss, and then there was the nerve pain. I can't even begin to describe to you how awful that was. </span></div>
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I switched doctors and found a new LLMD who, because of my severe neuro symptoms, decided to treat more aggressively. Fine with me! When I started the first round of IV antibiotics, nothing miraculous happened for several weeks. I kept waiting for SOMETHING, and during that time, I was in so much pain, I clenched my teeth so hard that I literally BROKE 6 of my teeth. And my Primary Care Provider STILL did not take this seriously (that's what really still upsets me - he just kept sending me to orthopedic doctors to "evaluate" me when I could barely walk) Around the 5th week of IV Rocephin though, I felt a shift. My nerve pain FINALLY Started to come down, my legs felt stronger and many of my other symptoms began to get better. Within a few more weeks, I continued to feel better and better and for the first time since I got Lyme, I had HOPE. None of the other dozens of doctors I'd seen had been able to give me that one thing: HOPE. I have to say, I am SO grateful to have found one of the best LLMDs and I am lucky that he is literally only 15 to 20 minutes away depending on traffic. It saddens me when I hear of people who have to drive HOURS to get to an LLMD appt.<br />
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<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSKsCEHL9mjPuHnrAh4-Y4SFNrhBXrPV9LhNebID2B9XRJdL80Kcqtgt-ScAE7wHpjGswk4QuYmGCeFOvx_8cdgi26wrcZgZ2BdX0bDZF4M-7CI2nLw10zaiw4uiFFud_DcJDLV5KHBQ/s1600/me+in+bed+.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSKsCEHL9mjPuHnrAh4-Y4SFNrhBXrPV9LhNebID2B9XRJdL80Kcqtgt-ScAE7wHpjGswk4QuYmGCeFOvx_8cdgi26wrcZgZ2BdX0bDZF4M-7CI2nLw10zaiw4uiFFud_DcJDLV5KHBQ/s320/me+in+bed+.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This is me on a "typical day" Too sick to get out of bed! <br />
(Sorry the pic is so blurry!)</td></tr>
</tbody></table>
So back to now: I'm back on IV Rocephin and after the first 5 weeks of the 2nd round, sure enough, I started to feel MUCH better. I actually for the first time in a year and half, took a walk around a park with my dog which was a milestone for me. I still have good days and bad and unfortunately with Lyme - just when you feel like you're turning a corner, you have a relapse, and feel like you're taking two steps backwards. But from experience, I know that I just have to stay the course. Whenever I start doubting whether I'm really improving, all I have to do is think of where I was a year ago and I'm SO much better than I was then. My progress is just SO incredibly SLOW and I'm impatient! I want to be better NOW! Dealing with a chronic illness takes so much patience and coping skills and so far (overall) I've done a pretty good job of staying sane and not getting bitter and depressed about my situation. Sure I have my "poor me" moments, but they don't last long and they actually are cathartic sometimes.<br />
<br />
I've found that by helping others, I feel like I have a purpose in my life again - I've become a mentor to dozens of other Lyme patients and although lately it's become a bit overwhelming (I've had some new symptoms in the past month or so that have set me back a bit) and I've gotten a bit behind in answering all the emails from people looking for answers.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNJah-jc6M_C_a72oUEP6_D1wnIz_BeGNuL5PtMIlSYJszZ7sGaw8xCGjImf8JAE4nb7wq8SPUNzokWfLGiRLC93YPGXRCybW-AXKqv4DGQduLsVB0iCgZWjmn7b_doAPJPbfS-bA9AA/s1600/me+on+a+healthy+day.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNJah-jc6M_C_a72oUEP6_D1wnIz_BeGNuL5PtMIlSYJszZ7sGaw8xCGjImf8JAE4nb7wq8SPUNzokWfLGiRLC93YPGXRCybW-AXKqv4DGQduLsVB0iCgZWjmn7b_doAPJPbfS-bA9AA/s320/me+on+a+healthy+day.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">See - some days I actually have GOOD DAYS! It helped<br />
that my BFF was visiting - really lifted my spirits! People<br />
see me like this and think "She doesn't look sick at all!"<br />
If they only knew. . . .</td></tr>
</tbody></table>
<br />
I am currently the "expert" on All Experts.com in the Lyme Disease category and while it's extremely rewarding, I'm the kind of person who will write a 2-3 page answer if I have to - because I really care about helping people. As a result, it's VERY time consuming and I'm trying to figure out ways to make things more efficient. I've noticed that I'm answering the same types of questions over and over, so I think I'm going to change my blog into a better resource that I can direct people to so they can get the answers they need. Plus, one symptom that has NEVER gotten better since I started, is my Lyme arthritis. If I spend even an hour writing online, my fingers joints get so painful, that I have to stop. So coming up with a more efficient way to help people is an absolute MUST at this point. Because I'd rather come up with more effective solutions versus giving up my role at All Experts.com. There is currently no other experts under the Lyme disease category and there are SO many people who need ANSWERS! I know, I was one of those people in the beginning who had no idea what to do and it really is gratifying to help people.<br />
<br />
So right now, I'm hoping to have some more blood tests taken next week to figure out why the heck I've suddenly developed crushing fatigue once again, bruising, and now I'm having major stomach issues where I get sick after eating. So frustrating because 2 months ago I was doing SO much better! But that's the roller-coaster of Lyme - you're up, you're down - sometimes you just have to "go with it".<br />
<br />
Thanks for listening and I hope to come up with a new "revamped" website soon that will include a FAQ section as well as links to many more resources out there.<br />
<br />
Best,<br />
Bonni aka SandieSandiehttp://www.blogger.com/profile/04238939507752991559noreply@blogger.com0tag:blogger.com,1999:blog-2364916966708215476.post-40554780623889951762012-05-17T18:49:00.003-07:002012-05-17T18:49:58.441-07:00ABCs 20/20 show to air segment on Lyme. Friday, May 18, 2012<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQCj4Swh_QnQwIC-lZTqg-ytia-J0SEZWZEURPXw-pZsXjN4iR2Kew2XNeircdfHwXIkWhsJeObCUKDk8SuHlqX2ZDmsB-c___chv1BnMhwGfJz3ZcfCSLwWAu03M5HKv6bgkctQ27CA/s1600/elaina1.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQCj4Swh_QnQwIC-lZTqg-ytia-J0SEZWZEURPXw-pZsXjN4iR2Kew2XNeircdfHwXIkWhsJeObCUKDk8SuHlqX2ZDmsB-c___chv1BnMhwGfJz3ZcfCSLwWAu03M5HKv6bgkctQ27CA/s1600/elaina1.jpg" /></a></div>
**PLEASE NOTE: ARTICLE SAYS SHOW WILL BE ON MAY 16TH, HOWEVER I BELIEVE THIS IS A TYPO SINCE IT IS SUPPOSED TO AIR FRIDAY NIGHT WHICH IS MAY 18TH**<br />
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<b>TOUCHED BY LYME: </b><br />
<b>Teen with Lyme will be featured on ABC’s 20/20 show</b><br />
<b>16th May 2012</b><br />
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Her YouTube videos caught the attention of ABC news.<br />
<br />
Elaina P. is a New Hampshire high school student who has been blogging about her experience with Lyme disease since 2008.<br />
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Just a couple of weeks ago, her mom posted a couple of Elaina’s videos on YouTube, which were noticed by some ABC news producers working on a segment about teens with hard to explain illnesses. One thing led to another, and here’s how Elaina explained it in her blog:<br />
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“For the past two days I had a national team on my property and in my life to get to know me. They saw my room and watched as I took medicines, wrapped my IV up, prepared for a shower, wrote a new blog entry, visited my miniature horse, ate ice cream, and performed regular activities. Nothing about the experience was regular however. It was surreal having strangers going to and from and putting a microphone on you and following you around. I’m used to just doing my thing pretty quietly but there was nothing quiet about the new visitors.”<br />
The show will air this Friday, 10 pm, on ABC News.<br />
<br />
Click here to see Elaina’s blog and view her videos.<br />
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TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s VP for Education and Outreach. Contact her at dleland@lymedisease.org.<br />
<a href="http://lymedisease.org/news/touchedbylyme/lyme-teen-2020.html">http://lymedisease.org/news/touchedbylyme/lyme-teen-2020.html</a><br />
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<br /></div>Sandiehttp://www.blogger.com/profile/04238939507752991559noreply@blogger.com0tag:blogger.com,1999:blog-2364916966708215476.post-5785154505097994402012-05-11T20:28:00.001-07:002012-05-11T20:28:05.201-07:00New Lab Testing & Awareness to Attack Lyme in California<br />
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<a href="http://ecosalon.com/new-lab-testing-and-awareness-to-attack-lyme-in-california/" style="color: black; font-weight: 400; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-decoration: none;" title="New Lab Testing and Awareness to Attack Lyme in California">NEW LAB TESTING AND AWARENESS TO ATTACK LYME IN CALIFORNIA</a></h2>
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by <a href="http://ecosalon.com/author/luanne-bradley/" rel="author" style="color: #666666; font-weight: 400; text-decoration: none;" title="Posts by Luanne Bradley">Luanne Bradley</a> on May 10, 2012 in <span style="font-family: 'Helvetica Neue', Helvetica, Arial, serif; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-transform: uppercase;"><a href="http://ecosalon.com/category/news-and-culture/" rel="category tag" style="color: #c71f2e; font-weight: 400; text-decoration: none;" title="View all posts in News & Culture">NEWS & CULTURE</a></span></div>
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(Full article at: http://ecosalon.com/new-lab-testing-and-awareness-to-attack-lyme-in-california/)</div>
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<img alt="" class="alignnone size-large wp-image-127086" height="302" src="http://ecosalon.com/wp-content/uploads/lyme-tick-on-leaf-455x302.jpg" style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; clear: left; padding-bottom: 5px; padding-left: 0px; padding-right: 0px; padding-top: 5px;" width="455" /><br />
<em>A new Borrelia Culture and awareness may increase Lyme Disease literacy in California just in time.</em><br />
“I’m testing three patients for it right now,” says Dr. Todd Maderis, a leading naturopath running the <a href="http://www.marinnaturalmedicine.com/practitioners.html" style="color: #c71f2e; font-weight: 400; text-decoration: none;" target="_blank">Marin Natural Medicine Clinic </a>in a county with the highest number of Lyme disease outbreaks in California. He has just returned from a national conference in San Diego on educating medical experts about the early recognition of Lyme disease cases which are too often undiagnosed or misdiagnosed as having other ailments.<span id="more-127076"></span><br />
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“Lyme has similar symptoms as chronic fatigue, depression, fibromyalgia, MS and ALS, and unless you run a complete lab panel on the bacteria, you won’t be able to see all of the stains and diagnose the disease properly,” explains Maderis, adding that <a href="http://www.advanced-lab.com/news/borrelia_culture_update.php" style="color: #c71f2e; font-weight: 400; text-decoration: none;" target="_blank">Advance Lab</a> in Pennsylvania has just released a new <a href="http://www.advanced-lab.com/news/borrelia_culture_update.php" style="color: #c71f2e; font-weight: 400; text-decoration: none;" target="_blank">Borrelia Blood Culture</a> for clinical use in 49 states which will advance better detection. While not available yet in New York, applications have been filed and are pending.<br />
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While the western blot has been the preferred serologic test, researchers have found no single blood test is reliable enough to be used alone and physicians are now urged to evaluate all of the markers to be certain of the diagnosis. Lyme combined with co-infections is known as “the great imitator” and about half of the people diagnosed remember having a tick bite.<br />
<br />
Maderis says most holistic practitioners have been careful about testing all strains, but this isn’t true of all doctors. “The gold standard is routinely running a complete line panel through<a href="http://igenex.com/Website/" style="color: #c71f2e; font-weight: 400; text-decoration: none;" target="_blank"> IGeneX, inc. Lab</a> in Palo Alto, California which looks at all strains of the Borrelia bacteria plus co-infections, but your local general practitioner down the street won’t know about it.”<br />
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That’s a big problem for victims. Thanks to global warming and more cases finally being reported, Lyme disease is the fastest-growing infections disease in the country, doubling since 1991 to over 200,000 cases per year, making it greater than AIDS and the West Nile virus combined. As a result, California health care professionals are boning up on how to better diagnose what can be a debilitating and deadly infection.<br />
While the state doesn’t keep records on outbreaks, Marin has proven fertile ground for the deer tick that carries the illness and many who suffer from the effects such as chills, headaches, brain lesions and brain fog, weakness, joint swelling and paralysis can be in grave danger if left untreated.<br />
<img alt="" class="alignnone size-large wp-image-127082" height="264" src="http://ecosalon.com/wp-content/uploads/mainpic_10222517_std.330901-455x264.jpg" style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; clear: left; padding-bottom: 5px; padding-left: 0px; padding-right: 0px; padding-top: 5px;" width="455" /><br />
One such victim was Bay Area author Amy Tan, who ended up temporarily in a wheelchair since none of doctors considered she might have Lyme when she complained for years about the symptoms. Tan spoke of her experience in the documentary, <a href="http://www.snagfilms.com/films/title/under_our_skin" style="color: #c71f2e; font-weight: 400; text-decoration: none;" target="_blank"><em>Under our Skin</em></a>, directed by Marin filmmaker Andy Abrahams Wilson of <a href="http://www.openeyepictures.com/about_personnel.html" style="color: #c71f2e; font-weight: 400; text-decoration: none;" target="_blank">Open Eye Pictures</a>.<br />
<br />
“Amy’s story is sadly typical,” said Wilson. “It’s a twofold failure of the medical community: they don’t know the best ways to test for Lyme, and even when they conclude it is Lyme, they can’t agree on how to treat it. ” Compounding that failure is a refusal of insurance companies to pay for treatment since it can result in a long-term illness. Wilson’s own sister was a victim and he suspects many of his neighbors have had the disease, too, since the region is a deer tick hotbed.<br />
Both the film and new books such as <em><a href="http://lymedisease.org/news/lyme_disease_events/event-west-coast-book-tour-for-out-of-the-woods-lyme-author-march-21-28.html" style="color: #c71f2e; font-weight: 400; text-decoration: none;" target="_blank">Out of the Woods</a></em> by Katina Makris, a Lyme survivor, strongly emphasize that awareness is key on the part of both health care experts and the public in avoiding, diagnosing and treating the illness in its earliest stages.<br />
<br />
In terms of treatment guidelines, Maderis and other Lyme literate doctors look to the <a href="http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf" style="color: #c71f2e; font-weight: 400; text-decoration: none;">International Lyme and Associated Disease Society </a>(ILADS) which offers an exhaustive list of symptoms to check off in patients. Among the weaponry is a combination of antibiotics while sorting out co-infections that often exist and complicate healing. Also administered are nutritional supplements and a yeast-controlled diet. All of these of course must be continually monitored by a health professional.<br />
<img alt="" height="333" src="http://ecosalon.com/wp-content/uploads/butterflygreeneffect-455x333.jpg" style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; clear: left; padding-bottom: 5px; padding-left: 0px; padding-right: 0px; padding-top: 5px;" width="455" /><br />
In the meantime, the public must focus on avoidance. That’s why May is<a href="http://www.lymedisease.org/activism/lyme_awareness.html" style="color: #c71f2e; font-weight: 400; text-decoration: none;" target="_blank">Lyme disease awareness month</a>, aptly timed since spring and summer are the at-risk seasons, and residents are being warned they don’t need to venture deeply into the woods to be exposed. One researcher at a California park found many nymphal ticks lurking under a wooden picnic table.<br />
<br />
“Nymphal ticks, the immature ones, can be hard to spot because they are as small as poppy seeds,” explains Phyllis Mervine, president of the California Lyme Disease Association, which maintains an educational<a href="http://http//www.lymedisease.org//" style="color: #c71f2e; font-weight: 400; text-decoration: none;" target="_blank">website</a>. “They are often in leaf litter or at the base of trees. Adult ticks are often found on the tips of grasses and shrubs. Both immature and adult ticks can transmit the illness.”<br />
<br />
She says small children are most vulnerable to the devastating effects of the disease because they are low to the ground and also might pull a tick off of their body without telling anyone. “Parents need to educate themselves about ticks and check their children carefully whenever they’ve been outdoors,” she warns, adding all people should check themselves after spending time outdoors.<br />
“If you do find a tick, remove it and place it in a Ziploc bag with a moist cotton ball and send it to <a href="http://igenex.com/Website/" style="color: #c71f2e; font-weight: 400; text-decoration: none;" target="_blank">IGeneX</a> for a diagnosis,” Maderis recommends.<br />
<img alt="" class="alignnone size-large wp-image-127192" height="309" src="http://ecosalon.com/wp-content/uploads/Bullseye-Rash-2-455x309.jpg" style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; clear: left; padding-bottom: 5px; padding-left: 0px; padding-right: 0px; padding-top: 5px;" width="455" /><br />
In recent weeks, researchers speculated that the direct and indirect effects of <a href="http://www.yaledailynews.com/news/2012/apr/11/global-warming-may-intensify-disease/" style="color: #c71f2e; font-weight: 400; text-decoration: none;" target="_blank">global warming</a> will probably increase the incidence of Lyme disease, as well as intensifying the prevalence of tuberculosis and HIV/AIDS and creating a more mosquito-friendly habitat which will up infection rates.<br />
<br />
“One possible way in which temperature may limit tick populations is by increasing the length of their cycle from two to thee years in the north, where it is colder,” explained Maria Diuk-Wasser, assistant professor of epidemiology at the <a href="http://www.yaledailynews.com/news/2012/apr/11/global-warming-may-intensify-disease/" style="color: #c71f2e; font-weight: 400; text-decoration: none;" target="_blank">Yale School of Public Health</a>. “Climate change could be reverting that and therefore increasing production of ticks.”<br />
<br />
While understanding climate control is extremely complex, battling Lyme doesn’t have to be as perplexing given the diagnostic tools now available to the medical community. But are western practitioners biting? “The gold standard way to test is not on the radar of most doctors,” argue Maderis, “But most holistics are already Lyme literate and using it and able to treat patients early for the disease.”<br />
Images: <a href="http://sandiegolymer.blogspot.com/2011/04/lyme-disease-epidemic-in-virginia.html" style="color: #c71f2e; font-weight: 400; text-decoration: none;" target="_blank">San Diego Lymer</a>;<a href="http://www.lymedisease.org/news/" style="color: #c71f2e; font-weight: 400; text-decoration: none;" target="_blank"> Lyme Disease.Org</a>; <a href="http://medicalpicturesinfo.com/bullseye-rash/" style="color: #c71f2e; font-weight: 400; text-decoration: none;" target="_blank">Medicalpicturesinfo</a></div>Sandiehttp://www.blogger.com/profile/04238939507752991559noreply@blogger.com0tag:blogger.com,1999:blog-2364916966708215476.post-85964443207737913262012-05-11T00:25:00.002-07:002012-05-11T00:25:20.503-07:00Lyme Forum in Saratoga Springs, NY on May 21st!<span class="Apple-style-span" style="color: #373737; font-family: Arial, Helvetica, sans-serif; font-size: 15px; font-weight: 300; line-height: 24px;"></span><br />
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EVENT: “A Forum on Tick-borne Diseases–What Next?”</h1>
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2nd April 2012</div>
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New York Congressman Chris Gibson is hosting a public forum about Lyme disease in Saratoga Springs, NY, on May 21.<a href="http://lymedisease.org/news/lyme_disease_views/event-a-forum-on-tick-borne-diseases-what-next.html" style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; color: #0a7cba; font-family: Arial, Helvetica, sans-serif; font-size: 15px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: initial; outline-style: initial; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-decoration: none; text-transform: none; vertical-align: baseline;"><span class="meta-nav" style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-family: Arial, Helvetica, sans-serif; font-size: 15px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: initial; outline-style: initial; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-transform: none; vertical-align: baseline;"></span></a></div>
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From the<a href="http://lymeactionnetwork.org/events.html" style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; color: #0a7cba; font-family: Arial, Helvetica, sans-serif; font-size: 14px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: initial; outline-style: initial; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-decoration: none; text-transform: none; vertical-align: baseline;"> Lyme Action Network</a>:</div>
<h2 style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; clear: both; font-family: Arial, Helvetica, sans-serif; font-size: 13px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: initial; outline-style: initial; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-transform: none; vertical-align: baseline;">
<span style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; color: #009900; font-family: Arial, Helvetica, sans-serif; font-size: small; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: initial; outline-style: initial; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-transform: none; vertical-align: baseline;">Congressman Chris Gibson Invites <span style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-family: Arial, Helvetica, sans-serif; font-size: 18px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: initial; outline-style: initial; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-decoration: underline; text-transform: none; vertical-align: baseline;">You</span> to Attend</span><br /><span style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-family: Arial, Helvetica, sans-serif; font-size: medium; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: initial; outline-style: initial; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-transform: none; vertical-align: baseline;">A Forum on Tick-borne Diseases – What’s NEXT?</span><br /><span style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-family: Arial, Helvetica, sans-serif; font-size: small; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: initial; outline-style: initial; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-transform: none; vertical-align: baseline;">Monday, May 21, 2012</span><br /><span style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-family: Arial, Helvetica, sans-serif; font-size: x-small; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: initial; outline-style: initial; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-transform: none; vertical-align: baseline;">Zankel Music Center, Skidmore College, Saratoga Springs, NY</span></h2>
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<a href="" style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; color: #1982d1; font-family: Arial, Helvetica, sans-serif; font-size: 14px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: initial; outline-style: initial; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-decoration: none; text-transform: none; vertical-align: baseline;"><img alt="Picture" src="http://lymeactionnetwork.org/uploads/3/0/0/6/3006112/1158398.jpg?147" style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; clear: none; margin-top: 0.4em;" /></a></div>
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<strong style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-family: Arial, Helvetica, sans-serif; font-size: 13px; font-style: inherit; font-weight: bold; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: initial; outline-style: initial; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-transform: none; vertical-align: baseline;"><span style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; color: #006600; font-family: Arial, Helvetica, sans-serif; font-size: x-small; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: initial; outline-style: initial; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-transform: none; vertical-align: baseline;">AN INVITATION</span></strong>Congressman Chris Gibson (NY-20) invites all individuals, communities, organizations, or enterprises with interests pertaining to Lyme disease and other tick-borne diseases to join him for a unique public forum he will be hosting in the Zankel Music Center, Skidmore College in Saratoga Springs, New York, on May 21, 2012 from 8:30 am to 6:00pm.The event, entitled <strong style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-family: Arial, Helvetica, sans-serif; font-size: 13px; font-style: inherit; font-weight: bold; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: initial; outline-style: initial; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-transform: none; vertical-align: baseline;">A Forum on Tick-Borne Diseases – What’s </strong><strong style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-family: Arial, Helvetica, sans-serif; font-size: 13px; font-style: inherit; font-weight: bold; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: initial; outline-style: initial; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-transform: none; vertical-align: baseline;">NEXT</strong><strong style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-family: Arial, Helvetica, sans-serif; font-size: 13px; font-style: inherit; font-weight: bold; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: initial; outline-style: initial; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-transform: none; vertical-align: baseline;">?</strong><strong style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-family: Arial, Helvetica, sans-serif; font-size: 13px; font-style: inherit; font-weight: bold; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: initial; outline-style: initial; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-transform: none; vertical-align: baseline;"> </strong>seeks to focus public awareness on the future of these difficult diseases. A group of speakers, leaders in their fields, will present forward thinking, problem-solving proposals to a panel of policymakers from both private and public sectors about what can reasonably happen NEXT to advance the cause of improving the lives of people suffering with Lyme disease and other TBDs.<div style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-family: Verdana; font-size: 14px; font-style: inherit; font-weight: inherit; margin-bottom: 1.625em; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: initial; outline-style: initial; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-transform: none; vertical-align: baseline;">
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Pamela Weintraub, renowned author of <strong style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-family: Arial, Helvetica, sans-serif; font-size: 14px; font-style: inherit; font-weight: bold; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: initial; outline-style: initial; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-transform: none; vertical-align: baseline;">Cure Unknown</strong>, and Executive Editor of Discover, will be the keynote speaker for this event.</div>
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<span style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; color: #006600; font-family: Arial, Helvetica, sans-serif; font-size: x-small; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: initial; outline-style: initial; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-transform: none; vertical-align: baseline;"><strong style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-family: Arial, Helvetica, sans-serif; font-size: 16px; font-style: inherit; font-weight: bold; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: initial; outline-style: initial; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-transform: none; vertical-align: baseline;"><span style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-family: Arial, Helvetica, sans-serif; font-size: 16px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: initial; outline-style: initial; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-decoration: underline; text-transform: none; vertical-align: baseline;">PRESENTERS INCLUDE:</span></strong></span></div>
<div style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-family: Verdana; font-size: 14px; font-style: inherit; font-weight: inherit; margin-bottom: 1.625em; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: initial; outline-style: initial; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-transform: none; vertical-align: baseline;">
<strong style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-family: Arial, Helvetica, sans-serif; font-size: 14px; font-style: inherit; font-weight: bold; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: initial; outline-style: initial; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-transform: none; vertical-align: baseline;">Dr. Richard Horowitz</strong>, internationally renowned physician and consultant in the field of Lyme and tick-borne diseases as been working with patients for over twenty years. He has seen the evolution of the diseases from the clinical perspective, and will present a proposal for a paradigm-shifting approach to the diseases that could encourage new perspectives, new synergies, and new research in this difficult subject.</div>
<div style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-family: Verdana; font-size: 14px; font-style: inherit; font-weight: inherit; margin-bottom: 1.625em; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: initial; outline-style: initial; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-transform: none; vertical-align: baseline;">
<strong style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-family: Arial, Helvetica, sans-serif; font-size: 14px; font-style: inherit; font-weight: bold; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: initial; outline-style: initial; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-transform: none; vertical-align: baseline;">Lorraine Johnson</strong>, one of the best known and most highly regarded advocates for Lyme patients, is an attorney advocate on issues related to the medico-legal and ethical aspects of Lyme disease and has published over 30 peer-reviewed articles on this topic. She is the Chief Executive Officer of LymeDisease.org, and is a director and an offficer of the International Lyme and Associated Diseases Society. She will speak on the Burden of Illness, an in-depth study of what the costs are to people who have Lyme and other tick-borne diseases and to their communities, and she will recommend research paths forward to address these issues.</div>
<div style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-family: Verdana; font-size: 14px; font-style: inherit; font-weight: inherit; margin-bottom: 1.625em; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: initial; outline-style: initial; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-transform: none; vertical-align: baseline;">
<strong style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-family: Arial, Helvetica, sans-serif; font-size: 14px; font-style: inherit; font-weight: bold; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: initial; outline-style: initial; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-transform: none; vertical-align: baseline;">Holly Ahern,</strong> associate professor of Microbiology at SUNY Adirondack, will present the findings of her 2011 research study on the number of cases of Lyme disease that go uncounted in our “official” statistics. Most cases of Lyme disease are NOT reported, and this number of “invisible” cases, will ultimately have a significant impact on all our communities.</div>
<div style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-family: Verdana; font-size: 14px; font-style: inherit; font-weight: inherit; margin-bottom: 1.625em; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: initial; outline-style: initial; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-transform: none; vertical-align: baseline;">
<strong style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-family: Arial, Helvetica, sans-serif; font-size: 14px; font-style: inherit; font-weight: bold; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: initial; outline-style: initial; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-transform: none; vertical-align: baseline;">Dr. Daniel Cameron </strong>will speak to the immediate need for our policymakers to PROTECT the doctors who are treating according to the ILADS standards. There are Two Standards of Care, each authorized by the CDC, and the doctors who treat according to the ILADS standards are routinely harassed and intimidated.</div>
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Additional speakers will be announced as confirmed. Registration information will be posted soon…stay tuned…</div>
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<strong style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-family: Arial, Helvetica, sans-serif; font-size: 14px; font-style: inherit; font-weight: bold; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: initial; outline-style: initial; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-transform: none; vertical-align: baseline;"><span style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; color: #006600; font-family: Arial, Helvetica, sans-serif; font-size: 14px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: initial; outline-style: initial; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-transform: none; vertical-align: baseline;">Please plan to attend! We need you to come – TO BE VISIBLE! </span></strong></div>
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<a href="http://lymenext.org/" style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; color: #0a7cba; font-family: Arial, Helvetica, sans-serif; font-size: 13px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: initial; outline-style: initial; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-decoration: none; text-transform: none; vertical-align: baseline;"><strong style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-family: Arial, Helvetica, sans-serif; font-size: 13px; font-style: inherit; font-weight: bold; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: initial; outline-style: initial; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-transform: none; vertical-align: baseline;"><span style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-family: Arial, Helvetica, sans-serif; font-size: small; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: initial; outline-style: initial; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-transform: none; vertical-align: baseline;">Click here for more information.</span></strong></a></div>
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</div>Sandiehttp://www.blogger.com/profile/04238939507752991559noreply@blogger.com0tag:blogger.com,1999:blog-2364916966708215476.post-58794010663488782102012-04-13T16:54:00.001-07:002012-04-13T16:54:45.652-07:00My letter to Dr. Phil following today's show on Lyme Disease<br />
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<a href="http://community.drphil.com/boards/?EntryID=31912&SubCategoryID=84&CommentID=254436#CommentID_254436" style="color: #222222; font: normal normal bold 16px/normal sans-serif; text-decoration: none; vertical-align: top;">Thank you SO much to Dr. Phil and his crew for FINALLY having the courage to bring Lyme Disease Awareness to the national level</a> </div>
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Replied By: <a href="http://community.drphil.com/profile/sandiegolymer/" style="color: #105285;">sandiegolymer</a> on Apr 13, 2012, 4:48PM</div>
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Dear Dr. Phil,<br />I was previously a VERY active person - I was a documentary filmmaker and had just wrapped on a feature length documentary that I'd been producing and was on top of the world. I had a great job, a great life and was getting ready to move to LA to work in the film industry. In the meantime, I decided to take a much needed vacation back in Virginia where my family and friends live.<br /><br />During that time, I had tons of energy like I always have, and was spending a lot of time outdoors in the woods in what I would later find out was a high endemic area for Lyme ticks. I concluded my vacation, drove back to San Diego and was getting ready to move to LA, when about 3 weeks later, I came down with a bad flu. I thought nothing of it, and just assumed it was a "run of the mill" flu that would be gone within a week. I did noticed a very large purple bruise about the size of a melon on my left thigh which looked very strange, and I KNEW I hadn't run into anything that hard to cause a bruise/rash that large. I also developed very strange rashes on my right hand, fingers, and palm. Again, I just ignored them, I wasn't one to run off to a doctor at the slightest ailment - I figured they would all go away.<br /><br /><br />The flu eventually subsided, but I was a bit more tired than usual. I had to stop running and just took walks instead. I just assumed they were lingering effects from my "flu".<br /><br /> A week later, I went to the store and stopped right outside the entrance. I realized that I had completely forgotten WHY I was there and it was the most scary, unsettling feeling I've ever had. That was the beginning of my strange cognitive and neuro issues I would have for the next 2 years.<br /><br />I had previously been an extremely active person - running up to 4 miles a day and hiking a few times a week. All of a sudden, I was so tired I couldn't get out of bed and my legs became weaker and weaker. At first I thought I was anemic, and when I went to a clinic, they said you probably have mono even though you aren't testing positive. I began to get fevers, night sweats, sleep disturbances, abdominal pain, and horrible nausea. Within 6 months I was developing severe arthritis in every joint in my body and THEN...the worst. . . nerve pain developing in my arms and legs. It was horrific pain.<br /><br />It took 7 months and a dozen doctors to diagnose me with Lyme, and since then, my entire world has been turned upside down! I have had to learn everything I could about Lyme Disease since I live in Southern California, we only have FOUR Lyme Literate doctors in this area.<br /><br />I have lived with Lyme Disease for over 2 years now and have had to educate myself because of the appalling lack of (correct) information about this disease. There is so much misinformation about Lyme, that I took it upon myself to read every book, article and studies available.<br /><br />I'm a member of several Lyme groups and have learned so much by listening to other patients about their experiences and treatments. Thankfully I now have a wonderful LLMD (Lyme Literate MD) and am finally getting the treatment that I need.<br /><br />It saddens me when well meaning doctors tell their patients that they should be CURED after 3 weeks of antibiotics and yet these same patients are still suffering years later because they still have large bacterial loads in their body that are causing symptoms like fatigue, brain fog, memory loss, nausea, weight loss/gain, sinus issues, muscle weakness and sometimes lack of mobility, nerve pain, joint pain, seizures, psychiatric manifestations, etc. - the list goes on and on.<br /><br />We need doctors to come together and realize that the past guidelines are NOT effective and they need to take their patients seriously rather than suggest that maybe it's "all in their head" (which happens more often than you'd think!)<br /><br />I am now unable to walk without a cane or walker (depending on how bad my legs are!), I went for a year of severe peripheral neuropathy in both arms and legs - the brain fog and lack of focus/concentration (is maddening!), fatigue, joint pain, nausea, headaches, sinus issues. . .the list goes on.<br /><br />But I do want to add this: I had a positive Lyme test and yet STILL had resistance from doctors to treat me. After my primary treated me according to the guidelines of the IDSA (Infectious Disease Society of America), and I STILL wasn't showing improvement after 4 weeks of Doxycycline, he said that his "ID friends told him that I couldn't still have Lyme.<br /><br />Well, that's all fine and well, but I'M STILL SICK and no one could tell me what was wrong with me. I was in horrific nerve pain which no amount of pain meds would help and it wasn't until I began IV Antibiotic treatment after living with this illness for a year and a half, that I FINALLY started to see improvement. My severe neuropathy finally started to subside after 5 weeks of IV abx and I stopped shopping for wheelchairs. Now I'm able to walk with a cane (and only need the walker every once in a while) and although I still suffer from many symptoms, I am in WAY better shape after IV abx, then I was before I started.<br /><br />Lyme Disease is such a difficult, complex disease and I understand why so many doctors are reluctant to treat Lyme patients because they simply haven't been trained properly. I know most doctors have their patients best welfare at heart - but they need to take a lesson from the brave Lyme Literate doctors who have gone out of their way to LOOK at the studies and the research and more importantly, LISTEN to their patients.<br /><br />We are not hypochondriacs or suffering from the need for attention. Believe me, I was a very confident person before I got sick, and this illness has not given me any SIGNIFICANCE at all - in fact, it has ROBBED me of over two years of my life.<br /><br />But I have and always will be, an optimist. And I am SO thankful to Dr. Phil and his producers for being brave enough to take on this very controversial subject. I truly hope that it WILL raise awareness, and bring about more discussions so that the thousands of people who are sick will have hope that someday, they will be taken seriously and get the treatment and support they so deserve.<br /><br />Best,<br />Sandie </div>Sandiehttp://www.blogger.com/profile/04238939507752991559noreply@blogger.com2tag:blogger.com,1999:blog-2364916966708215476.post-7114645452281774392012-04-07T19:33:00.003-07:002012-04-07T19:33:44.007-07:00Kris Carr's CRAZY SEXY JUICES & SMOOTHIES<a href="http://crazysexyjuice.com/" target="_blank">Kris Carr's Crazy Sexy Juices! </a><br />
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I've long been a fan of Kris Carr who is the filmmaker behind "Crazy, Sexy, Cancer" and several books about how to improve your health whether you have Cancer, Lyme Disease, any other Chronic Illness OR are just looking to start treating your body better! She has a new Electronic version of her book "Crazy Sexy Juices and Succulent Smoothies" and I want to say, it was because of Kris Carr, that I learned how to make delicious green smoothies at home - talk about a 180 in changing my dietary habits! But when you're faced with a severe chronic illness, you learn pretty fast that you need to make changes - FAST! Here is a summary of her new book:<br />
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<span class="Apple-style-span" style="color: #3e6d27; font-family: museo-sans-rounded, sans-serif; font-size: 18px; font-weight: 900; line-height: 21px;">Crazy Sexy Juices & Succulent Smoothies is your ultimate guide to juicing & blending. It’s the next best thing to having me right in your kitchen!</span><br />
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Learn everything you need to know about making juices and smoothies from buying the equipment to savoring your first sip—including how to maximize nutrition and adjust flavors to suit your taste buds. You’ll get 60 of the best recipes from the Crazy Sexy Community—hand-picked by me—full of fun options, new twists and delicious goodness.</div>
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If you’re new to the juicing and blending scene, I’ll teach you how to make this healthy habit stick so you can have more energy, a kickin’ immune system, clearer skin, bright eyes and thighs any pair of skinny jeans would cherish.</div>
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If you’re an experienced pro (boo-yah!), then you already know the amazing health benefits of juicing and blending. I’ve got you covered with a fantastic variety of recipes (good-bye boring routine). This complete guide is an 80-page digital book that answers all of your questions about juicing and blending PLUS includes 60 tasty recipes.</div>
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This digital book is available only as a Adobe Acrobat pdf file. After purchase, you can download the file to read on your <strong style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><span style="background-color: yellow; border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;">computer, laptop, iPhone, iPad or iPod touch. </span></strong>Click <a href="http://crazysexyjuice.com/faq.html" style="-webkit-transition-delay: initial; -webkit-transition-duration: 0.4s; -webkit-transition-property: color; -webkit-transition-timing-function: linear; border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; color: #87409e; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;" target="_blank">here</a> for more information.</div>Sandiehttp://www.blogger.com/profile/04238939507752991559noreply@blogger.com0tag:blogger.com,1999:blog-2364916966708215476.post-37686561322143949922012-04-07T14:40:00.004-07:002012-04-07T14:40:59.659-07:00Dr. Phil to discuss Lyme Disease, Friday April 13th, 2012!<div class="separator" style="clear: both; text-align: center;">
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<span class="Apple-style-span" style="font-size: x-small;"><span class="Apple-style-span" style="font-family: Verdana, Arial, Helvetica, sans-serif; line-height: 18px;">On April 13th, Dr. Chitra Bhakta, a well known and respected Lyme Literate Medical Doctor as well as Journalist,<strong> </strong></span><span class="Apple-style-span" style="color: #2a2a2a; font-family: Tahoma, Verdana, Arial, sans-serif; line-height: 17px;">Brooke Landau, with the CW Network in San Diego, will appear on the Dr. Phil Show. </span></span><br />
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<span class="Apple-style-span" style="font-size: x-small;"><span class="Apple-style-span" style="color: #2a2a2a; font-family: Tahoma, Verdana, Arial, sans-serif; line-height: 17px;">Brooke shares her 17 year battle with Lyme Disease. Brooke went to bed fine one day, and woke up unable to move from the waist down. She overcame that battle and today she continues to fight and survive. Brooke's survival story has been featured on the Today Show, Good Morning America, Fox News, ABC, Discovery Health, Mystery ER, CW Network...and now the Dr. Phil Show. Brooke says she continues to speak out for those who can't.</span><span class="Apple-style-span" style="color: #2a2a2a; font-family: Tahoma, Verdana, Arial, sans-serif; line-height: 17px;"><br style="line-height: 17px;" /></span></span><br />
<span class="Apple-style-span" style="color: #2a2a2a; font-family: Tahoma, Verdana, Arial, sans-serif; line-height: 17px;"><span class="Apple-style-span" style="font-size: x-small;"><br /></span></span><br />
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<span class="Apple-style-span" style="color: #2a2a2a; font-family: Tahoma, Verdana, Arial, sans-serif; line-height: 17px;"><b><span class="Apple-style-span" style="font-size: x-small;">Check your local listings everyone! This could be a HUGE step forward in promoting Lyme Disease Awareness on a national level! </span></b></span>Sandiehttp://www.blogger.com/profile/04238939507752991559noreply@blogger.com1tag:blogger.com,1999:blog-2364916966708215476.post-50172326502317033892012-03-28T01:11:00.001-07:002012-03-28T01:13:12.377-07:00Tips on Herxing and Detox (from YouTube)Click here for You Tube video:<br />
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<a href="http://youtu.be/Ic2XJ2_D_vI" target="_blank">Tips to help with Herxes and Detoxing </a>Sandiehttp://www.blogger.com/profile/04238939507752991559noreply@blogger.com0tag:blogger.com,1999:blog-2364916966708215476.post-82625857849506831812012-03-27T00:37:00.000-07:002012-03-27T00:37:10.147-07:00Fatigue and Brain Fog<br />
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<span class="Apple-style-span" style="font-size: small;">Fatigue and Brain Fog (Written by an Australian Research Council)</span></h2>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivg6eqCwgPA6xFBkkjp5ie-2fX1FFFtcCxr3TKeJcZtuo1z6R8LkFkKOeNYpLEdqluXTM4tZgPR3-syLlfVKWSfGpleSNN-5zYfA1GgtnMEOeWZM7b__-_GN5VQxLkjjTkbNE0L2QdHg/s1600/chronic-fatigue-syndrome_article1-300x265.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivg6eqCwgPA6xFBkkjp5ie-2fX1FFFtcCxr3TKeJcZtuo1z6R8LkFkKOeNYpLEdqluXTM4tZgPR3-syLlfVKWSfGpleSNN-5zYfA1GgtnMEOeWZM7b__-_GN5VQxLkjjTkbNE0L2QdHg/s1600/chronic-fatigue-syndrome_article1-300x265.jpg" /></a><span class="Apple-style-span" style="font-size: 11px; line-height: 16px; white-space: pre-wrap;"><span class="Apple-style-span" style="color: #333333;">Fatigue is one of the most common symptoms experienced by people living with chronic illness, yet it is difficult to describe, measure and define. The way fatigue is experienced is unique to each person, but it is very different to tiredness. </span><strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;"><span class="Apple-style-span" style="color: red;">Since it is usually invisible to others, family, friends and colleagues can sometimes misinterpret fatigue as laziness or lack of motivation; hence there can be little understanding and support for the person experiencing fatigue.</span></strong><span class="Apple-style-span" style="color: #333333;"> Health workers may also dismiss fatigue or fail to acknowledge the seriousness of the effect it has on people’s lives. Fatigue may be understood by others to be tiredness that may be resolved by sleep, but this is not usually the case. </span><strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;"><span class="Apple-style-span" style="color: #333333;">Fatigue can serious affect our well-being because it has an impact upon every aspect of our functioning, including physical, emotional, psychological, spiritual and social aspects. </span><span class="Apple-style-span" style="color: #990000;">Fatigue can alter the way we live our lives.</span></strong></span></div>
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Some of us experience fatigue continuously and relentlessly. Others find they have episodes that are triggered by events such as stress or exertion. Whether fatigue is continuous or episodic, there is a strong sense that it is better managed by working with, rather than resisting it. While fatigue diminishes a sense of control in one’s life, resisting it will surely result in further loss of control.</div>
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<span class="Apple-style-span" style="color: #333333;">Fatigue robs us of energy and abilities, and fluctuates widely during a day. It may be experienced as complete lack of energy and exhaustion, inability to concentrate or think clearly, a breakdown of emotional coping skills, inability to participate socially and/or perceived loss of hope, faith and beliefs. The experience could be one, some, or all of these things and this will vary from day to day. </span><strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;"><span class="Apple-style-span" style="color: red;">Fatigue brings with it a high degree of uncertainty and for some of us, a downward spiral of mood. A lack of understanding and support for people who are fatigued compounds this.</span></strong></div>
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Yet some of us have noted a more positive side to fatigue. It will force us to take the time to be still and restful. This is something that has been hard for some of us to do in the past. Fatigue means different things for each person’s life, as you will see in our responses.</div>
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<strong style="line-height: 16px; white-space: pre-wrap;">What is your experience of fatigue?</strong></div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">Ann: </strong>I have chronic fatigue as part of my overall illness. This provides me with a lack of energy and continually tired muscles, and a loss of will to be active.</div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">Graham:</strong></div>
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I have Crohn’s colitis and when I have a flare up of the disease, which has been quite often over the past two years, I become extremely fatigued. The fatigue is that suddenly an energy seems to have left my body e.g. it is difficult to get out of the car, up off the toilet, chairs and so on. I often ache all over and have a temporary arthritis in the body and legs. I feel that everything I have to do, in particular going out to activities are no longer enjoyable, they are just things to somehow get through. I have the feeling constantly of wanting to lie down on the floor and rest and forget everybody and everything. I just want to be left alone, although at the same time, I don’t want to be left alone. When I lie down because I just have to rest, I can lie quietly and enjoy it because I don’t have the energy to worry about what I am not doing if I had the energy. I can sit in a chair calmly for quite a long time just thinking and resting.</div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">Di:</strong></div>
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Fatigue is the most constant, yet the most under-rated symptom of my condition. For me fatigue is ever present, varying only in intensity. It is far more than being tired, sleepy or lethargic. The closest comparison I can think of is constant and complete exhaustion. At best my fatigue is ceaselessly having to push myself to get though daily activities, rather than enjoying them. At worst fatigue is overwhelming, mind numbing, all encompassing. It drains the very life out of me, leaving me feeling utterly exhausted and emotionally and physically drained.</div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">Chrispy</strong></div>
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Fatigue is not being able to do the things you want to do. It’s a dragging feeling, like lead, being washed out. Not being tired really in that you need sleep but just the body feeling tired. Drained is another word I’d use for fatigue.</div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">Julie</strong></div>
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Fatigue can be either mental or physical, but physical fatigue is always accompanied by mental fatigue. I wake up with fatigue and it’s a downward spiral throughout the day. Unfortunately my pain worsens with increasing fatigue, so that, for example, both worsen during the course of the day, both worsen when I’m with others, both worsen with exercise, and both worsen when I’m not able to sit with a whole body support (for example in a full-backed recliner). Really bad fatigue makes me feel as if someone has stolen my bones.</div>
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My fatigue is alienating (both physically and psychologically) and all encompassing (being both physical and mental). It requires so much effort to make myself do the smallest things, that it really takes the enjoyment away from most things. Notice how I said “make myself” .... that’s basically what it’s boiled down to ..... I have to literally show a lot of determination to do the smallest things. It’s responsible for taking the enjoyment out of everything but the smallest things. Realistically, how much time do I want to I spend sitting and watching a flower bloom, or a spider make a web?</div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">Iolanda</strong></div>
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One minute you are filled with energy... and the next minute it’s all drained away –</div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">Michelle</strong></div>
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I have found that I am more tired than I used to be, and don’t have as much energy. This may be due to my condition, changes in my life, middle age or a combination.</div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">Andrew</strong></div>
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Mind numbing lack of energy. Feeling as if I literally have the weight of the world on me. I feel so heavy. It takes total will power to get out of bed, off the chair, getting in the shower etc. I can feel the energy draining from me. Its like someone left the tap running and it’s MY energy that is running out of it. Its about not being able to think or concentrate and not being able to do anything at all but sit or sleep. It’s more than just tiredness.</div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">Michelle</strong></div>
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Episodic, draining, frustrating, at times overwhelming. Really bad fatigue makes me feel as if someone has stolen my bones. I think it is an inevitable part of chronic health problems.</div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">Helen</strong></div>
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For me, fatigue can be physical, psychological/emotional, mental, spiritual. And I guess that when I feel it in one area of my life, it quickly spreads into other areas. Physical fatigue happens to me from fluctuating blood sugars. Both highs and lows are tiring (bring on the headaches, the fluid retention, massive shifts in hunger & appetite, just to list a few). During these times it’s hard to keep up social interests, I drag myself into work, and generally I feel like my life becomes disordered. I feel like I lose control over things that usually matter to me. But then I’m also at that point that I’m too tired to care.</div>
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Psychological fatigue happens when I can’t find any more emotional resources to deal with the physical effects. I resent feeling unwell. I resent the fact that looking after myself is a full-time job. This often leads to lapses in positive/beneficial health behaviour. I ‘throw in the towel’ so to speak. Mental fatigue is multi-faceted. Blood sugar swings affect concentration, bring on the brain fog, and I’ve described it before like a slow modem connection. You are aware of the process, and it seems to take forever. Sometimes I stop mid-sentence wondering what I even set out to say! Sometimes I become dyslexic, or just one big blubbering mess where I’ve lost the cognition to say anything coherent. I guess Spiritual fatigue is what I use to describe the feeling of loss of hope/faith or values I believe in. When I get this way, I know I’m close to the bottom and seriously need to make some readjustments in my life.</div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">Mari</strong></div>
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I often get tired and can work through it to a renewed level of energy. The fatigue I relate to is when I totally close down, need to lay supine, can’t bear to be touched spoken to or moved in any way. I don’t think or talk straight, I just succumb to being taken away. It comes over me really quickly and I recover sometimes very quickly, can be with in 15 minutes or over days.</div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">Adapting Our Lives</strong></div>
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Fatigue can change the way we live our life. Like chronic pain, fatigue in chronic illness is not easily treated. We have become aware that we have an amount of energy which, when gone, is not replenished. Therefore, we learn to budget the energy we have. This means that we now make careful decisions about what we do and how we do it, with consideration of the energy budget. For some, the constant lack of energy means that we may not participate in life as fully as we once did. Interacting with others expends valuable energy and so we may become less social. Some of us have found activities that conserve our energy but provide enjoyment, such as using a computer or reading a book. Feeling too fatigued to meet up with friends and participate in events as we once did can result in feelings of loss, sadness and loneliness.</div>
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We may feel as if there is some diminishing of the joy of life. We may need to have others assist us with some tasks that we are unable to do because of fatigue. Loss of independence to any extent does not come easily but we can learn ways to reduce the impact of fatigue on our lives. We learn to ask for help. For some it may mean changing our living situation, such as living with supportive family members. If we have partners they may take on roles that we once fulfilled. We may find that there is a need to adapt our lives to maximise our rest and to ensure that our energy is conserved. Pacing our activities and planning ahead may help to minimise the impact of fatigue.</div>
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<strong style="line-height: 16px; white-space: pre-wrap;">How does fatigue impact upon your life?</strong></div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">GRAHAM: </strong>I lack the drive many times to do anything as my body lacks the energy and my mind loses its drive. Everything appears to require too much effort.</div>
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It is more difficult than usual to be good company to others. The lack of energy makes it hard to concentrate on for example, reading, crosswords, playing cards or the like; hard to happily chat; hard to listen to music with a rhythm that I love because somehow I can’t respond and the idea of having a rest overwhelms my mind. Irritation grows a little because I know others don’t know what I am feeling and I don’t expect them to understand.</div>
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I struggled to work until the fatigue was so constant and debilitating, I existed rather than lived.</div>
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I find I have to curtail my activities, struggle to get through washing, ironing, washing my hair, bothering to play with the dogs and put off ringing up to make appointments. </div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">Di</strong></div>
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Fatigue increasingly limits what I am able to do without completely wiping myself out. I struggled to work until the fatigue was so constant and debilitating, I existed rather than lived. I rarely went out, had no time or energy for any personal interests or hobbies and slept half of each weekend away in order to drag myself through another week at work. My husband had to gradually take over more and more of the housework, as I couldn’t cope with both that and work.</div>
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I’m no longer able to work, but fatigue still impacts heavily on my life. Fatigue doesn’t just affect my physical energy, but impedes on my mental ability to concentrate and exacerbates my almost constant state of brain fog and forgetfulness. The worse the fatigue, the less physical and mental energy I have to cope with day to day activities. Some days I can manage some housework, shopping and maybe even some other activity, and on other days can’t. Some days I’m able to cope with little more than time on the computer or light reading, but on others I can’t even manage these. I may find even following simple conversations impossible. Leisure and social activities are rarely pleasurable but rather something to “get through”, therefore severely limiting what activities and social events I am able to cope with.</div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">Helen</strong></div>
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Fatigue impacts big time. Not being able to go out and if you do, knowing that the next day or few days you will only be able to do a minimal bit of housework if even that. It’s struggling through trying to cope but feeling empty. It can be so debilitating that to put one foot in front of the other is almost impossible. Having to go to bed early every night is the only way to possibly even try to cope through the next day. Unable to enjoy just the simple things in life because fatigue takes over and its just impossible to think about anything extra.</div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">Julie</strong></div>
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My physical fatigue is severe enough for me to have had to move back and live with my parents because quite frankly, I can’t do the minimum things for myself. I have trouble holding a phone, let alone muster the energy to cook for myself every night. It severely limits what I can do out of the house too. Getting exhausted after 1/2 hour out of the house really does make it difficult to enjoy anything I do, for example, it’s hard to enjoy social activities which are all the more important for me since I don’t have much contact with friends anymore.</div>
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The frustrating thing with fatigue is that it’s impossible to find things to do when you’re so tired. I hate television. Reading is impossible too - not only do I have trouble holding both the magazine and my head up without support, the mental fatigue is too bad and I can’t sit and read anything anyway. Because of the mental fatigue and my brain injury memory problems, talking books are impossible too. My computer is my companion - almost my best friend - yet as my health is deteriorating with the years I’m finding that I don’t have the physical energy to sit at the computer and the mental energy to even read emails. Hence it’s taken me 5 days to finish this email. Even enjoying the simplest of things is difficult. I can’t even enjoy eating dinner when I can barely lift a fork or spoon to eat with.</div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">Iolanda</strong></div>
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I don’t think that I go out as much as I used to, tending to want to stay at home more but in a way I want to be doing more.</div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">Andrew</strong></div>
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It’s planning everything that I do and everywhere I go and making sure that I can get enough rest time. It means that I have to say no to things that I would really love to do. Fatigue at times has almost total control over your life. You are dictated by it so often.</div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">Michelle</strong></div>
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My severe bouts of fatigue seem to occur periodically - usually once or twice a week. On these days I usually have to spend the whole day in bed. Other days I can usually struggle thru, although I mostly go to bed about 7.30pm, occasionally even earlier. Sometimes I go back to bed for a while after breakfast.</div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">Helen</strong></div>
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If I’m feeling a certain type of tiredness I don’t venture too far from home, so I’m often last minute cancelling arrangements or avoiding making them if they are too far into my future. My line goes something like this “sounds fantastic I would love too do that, but I’m not sure if I can manage it, can I stay flexible with it”. I have to avoid the back to back activities. [MS has] slowed me down, and some good things have come from that. I have become more self directed and self nurturing with my time. As time goes on I’m also better at not letting myself go to that extreme of exhaustion. Sometimes I feel sad about the shared life events that I miss out on. I have mostly overcome my fear of being unseen and forgotten.</div>
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<strong style="line-height: 16px; white-space: pre-wrap;">What Triggers Fatigue?</strong></div>
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Over time, we learn that certain activities or events may trigger fatigue. Recognising the triggers assists in avoiding, minimising and managing episodes of fatigue. The two most common triggers we have identified are stress and ‘overdoing it’, but there may be others to do with the physiology of the illness we have, the medications we take, eating certain foods and poor quality of sleep. <strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">Hot weather may increase fatigue for people with certain illnesses, as can other symptoms such as pain, infection and depression.</strong></div>
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Poor diet and hydration may also trigger fatigue. Fatigue can be caused or worsened by other conditions, so it is important to communicate your fatigue experiences with your health worker.</div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">Sometimes the trigger is not within our control, such as an illness flare up.</strong> During these times we manage the fatigue as best we can so that we are comfortable and assured that what we are doing is what we need to do in order to shorten its influence.</div>
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Sometimes we might decide to ignore the triggers and to continue doing what is important to us. The consequences may be worth the opportunity to enjoy doing something. At these times, we are comparing the worth of being able to do an activity or enjoy an event with the impact of fatigue. Fatigue is always changing, and we find we want to test the boundaries from time to time. We might find there are less consequences than previously thought, and that can open up the opportunity to do a bit more of what we enjoy.</div>
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Triggers may not be as relevant for those of us who experience constant fatigue. Fatigue is always there and only varies in intensity. <strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">The biggest challenge is how to structure our day so that small achievements are possible without compromising oneself.</strong> Some people have little control over fatigue, no matter what they do. It becomes a matter of learning how best to live with it. Knowing and identifying triggers for fatigue (if there are any) assists us to attain some sense of control and confidence. If we know what triggers fatigue we can avoid or minimise these events or situations where possible. For all of us, having learnt what helps to alleviate fatigue enables us to know what we need to do should fatigue emerge in our day.</div>
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<strong style="line-height: 16px; white-space: pre-wrap;">We now discuss what we have learnt to be the triggers for fatigue.</strong></div>
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<strong style="line-height: 16px; white-space: pre-wrap;">Are there triggers for your fatigue?</strong></div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">Graham</strong></div>
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A flare up of my crohn’s colitis triggers my fatigue. I can become tired with a restless night or having done too much, but it is not the same as the deep fatigue from my illness.</div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">Di</strong></div>
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Although fatigue is a constant part of my life, certain things will make it worse and less manageable. Sometimes just pushing myself too hard or overdoing things, seem to be obvious triggers. Emotional stresses trigger my fatigue just as easily as physical stresses, but these are often harder to avoid, so controlling the resulting fatigue is more difficult. At other times there are no obvious triggers. <strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">Extreme fatigue may suddenly hit for no apparent reason, especially late in the day or evening. Some days it’s all I can do to get out of bed and the day is full of overwhelming fatigue, though I can think of no obvious cause.”</strong> Triggering factors are trying to do too much, stress, family problems, and health.</div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">Chrispy</strong></div>
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No - I suffer fatigue 24 hours a day, however some things will make it worse...just the progression of the day and any exercise or overactivity. <strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">The fatigue I suffer is an accumulation of the fatigue from the cancer, the cancer treatment, the encephalitis, the pituitary tumour and the fibromyalgia.</strong> It’s more than normal for any sufferers of these diseases because of the cumulative effect... <strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">it’s basically ‘layer upon layer’ of fatigue.</strong></div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">Iolanda</strong></div>
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Stress is a big trigger for me, which suggests that a lot of the fatigue I feel is emotional rather than physical. In this case, exercise can actually help.</div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">Andrew</strong></div>
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If I do too much for a couple of days running it can bring on a bout of fatigue. I also find that sleeping really badly is a product of my fatigue not the other way around. </div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">Michelle</strong></div>
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Overdoing it seems to be the main trigger for me. This is particularly so if I have had a good day with a bit of energy. Then I rush around and try to do too much, not only housework. I also overdo it on the quilting side too. Sometimes I get a bout of fatigue for no apparent reason. Whatever causes the fatigue it just has to be endured.</div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">Helen</strong></div>
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The biggest trigger for me is over-commitment. By this<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;"> I mean that I get enthusiastic about “doing” when I am having a good day. I momentarily forget that I have limitations i.e. a chronic illness that slows me down and demands necessary levels of attention.</strong></div>
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S<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">o I extend myself too far in giving to others, or doing too much in one day etc. It leaves me exhausted. </strong></div>
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In terms of physical fatigue, the triggers are really related to aspects that adversely affect blood sugar levels e.g. high levels of stress, female hormones (agh!), food or the lack thereof, wrong insulin doses, not enough exercise, or too much exercise. Emotional fatigue comes from taking myself too seriously with my diabetes (unrealistic expectations); almost being obsessive about it; forgetting that I’m a person with diabetes, but I’m not diabetes...all that kinda thinking. ‘Diabetes Burnout’ is a good term for it. Have been there and done that!</div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">Mari</strong></div>
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Over doing it. Consciously pushing through, not hearing my mind and body’s call for rest and peace, fullness. Being a glutton and wanting everything I can manage without any real connection to the self.</div>
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<span class="Apple-style-span" style="font-size: small;"><strong style="line-height: 16px; white-space: pre-wrap;">Managing Daily Life</strong></span></div>
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Living with fatigue is complex, but the approach to incorporating it into our lives may be straightforward. If we learn how to respond to fatigue in constructive ways we may feel a reclaiming of a sense of control.</div>
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We have learned that we need to plan ahead for activities.<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;"> It may mean factoring in a period of rest prior to an activity, followed by a period of rest afterwards.</strong> Maybe we can organise to have mobility aids or a clear map of where the lifts or toilets are beforehand to minimise effort during the outing. Educating significant people in your life about your needs to relation to fatigue may assist them to be understanding and supportive. <strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">Attaining a balance of rest and activity seems to be important.</strong> Learning your own particular requirements for rest enables a pattern for living which shapes each day.</div>
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It may be helpful to reorganise the home to enable conservation of energy. Examples include reorganising cupboards so that things are easily accessible, or having a stool in the kitchen or bathroom to reduce the need to stand. Some of us who are fatigued constantly may need more bed rest. Sitting takes less energy than standing. Lying flat with your body and mind at rest appears to reduce the effects of fatigue for some people. If employed, then consider opportunities to negotiate hours of work to minimise fatigue. For example, working shorter hours in each day or having a longer period of rest in the middle of the day, having somewhere you can lay down at work and using a wheelchair if mobility is an issue, can making working possible. </div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">The unpredictable nature of fatigue means that we become flexible and ready to change plans when necessary. Guilt about sudden changes of plan only burdens us emotionally. </strong>We consider it part of looking after ourselves to communicate to others about fatigue. It is vital to our sense of self to be achieving something each day, despite fatigue.</div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">So, setting small tasks or projects so that we feel a sense of purpose and pleasure in our day is important.</strong> It can provide balance to the times when we need to rest and helps us to feel good about ourselves. We talked about how we adapt our lives to incorporate fatigue. </div>
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<span class="Apple-style-span" style="font-size: small;"><strong style="line-height: 16px; white-space: pre-wrap;">How do you adapt for fatigue in your day to day life?</strong></span></div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">Mary: </strong>I try to make certain I do something each day, but I only do small things. It takes my determination to overcome the effects of fatigue. In the long term this does take its toll on me in mental stress and strain.</div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">Graham</strong></div>
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If the fatigue is overwhelming, I rest, sit on a chair for a long time without doing anything, and try to do just the basic tasks like eating something when needed, not cooking much, having a shower maybe, accepting that I can’t do anything about it and cancelling any outings. If it is fatigue that I can manage I try to do whatever was planned but don’t drive or attend any outings where I might be expected to be chatty and sociable, or be active.</div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">Di</strong></div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">I sleep nearly 40% of my life away, but this doesn’t eliminate the constant fatigue, rather it helps me cope with it. </strong>I try to pace myself in order to control my level of fatigue and have limited success. Life simply doesn’t allow me to completely plan out what I think I will be able to do without worsening fatigue. Imposing limits on both the type and amount of activity or social event, is one way I try to manage fatigue. Again I have limited success, as sometimes fatigue appears as a sudden crushing force, which is unavoidable and unstoppable. I find I’m increasingly avoiding such situations, as sudden overwhelming fatigue may quickly turn into an adrenal crash, taking days to recover. <strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">These are debilitating and humiliating events, which I try to sleep off, but avoiding social events in particular, leads to social isolation. </strong>When this happens, my husband tells me to “roll with it and not fight it.” This is hard but when I can do so, extreme fatigue is more manageable and recovery a little faster.</div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">Ted</strong></div>
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I have to basically work around the things I’ve got planned. <strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">So for every activity out of the house, I have to rest the day before going out, and recover the day after.</strong> If I do go out, I have to leave early, even after only 1 hour, because I can’t stay longer. I’ve missed weddings because I haven’t had enough energy to even attend the church service.</div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">Iolanda</strong></div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">Remain active (when you can) as it really does help.</strong> As I start early in the morning, I am in bed by 9:30-10:00 at night so I get the rest that I need. If I need to, I have a snooze for a while when I get home from work. I also have arrangements at work to be able to take a nap if I need to. <strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">There is a time to give in to fatigue and time to fight it off - we need to know the difference.</strong></div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">Michelle</strong></div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">By planning everything that you do, not just for that day but for the whole week sometimes.</strong> By realising sometimes that you are overdoing it and so I cut back on what I’m doing or take time out to rest.</div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">Andrew</strong></div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">Learning to accept fatigue as part of my life. I don’t think this is defeatist, more realistic.</strong> Learning to “give in” when necessary, to sleep late, go to bed early etc. without feeling guilty. This is made easier with an understanding and supportive husband and family, both practically and emotionally.</div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">Helen</strong></div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">I like to think that I’m getting better at knowing my ‘boundaries’</strong> - both identifying them for myself and being assertive regarding them with others’ expectations. Generally, I like to try to prevent fatigue (easier said than done) by balancing both work and play, and eating and exercising. Managing stress is a huge one...I try to find at least one pleasurable thing to do each day.</div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">Mari</strong></div>
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Take it slower, ask for assistance, restructured my work life, avoid back to back activities, early nights, good diet /exercise, meditative rituals.</div>
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<span class="Apple-style-span" style="font-size: small;"><strong style="line-height: 16px; white-space: pre-wrap;">Explaining Fatigue</strong></span></div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">The experience of fatigue may not be easy for others to understand, hence it may be misinterpreted as laziness or lack of motivation</strong>. The experience of repeatedly attempting to get others to understand about fatigue may lead to thinking that it is futile to try to explain. </div>
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Lack of understanding and unhelpful, simplistic suggestions for remedies can frustrate us. We have developed more readily accepted excuses for not being able to do things because of fatigue, such as “I am not feeling well” or “I am in pain”.</div>
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These responses can avoid unwanted reactions arising from misunderstanding about fatigue.</div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">The experience of fatigue sometimes does not hold legitimacy in the eyes of others. </strong>Most of us feel that it is important that some people, family and close friends are aware of, and understand, fatigue so that they do not misinterpret our actions or inability to participate.</div>
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We are selective about who we talk to about fatigue and have found ways of explaining the experience to those people. <strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">Examples centre around attempting to relate fatigue to an experience they are familiar with, such as having a bad case of the flu or thinking of extreme exhaustion, magnified and ever- present. </strong>Over time, it may be that the effects of fatigue become evident to others and a level of understanding builds up about what is happening, making explanations less necessary.</div>
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While health workers may not always respond in helpful ways when we raise fatigue issues, it is important to persist in relaying the experience and impact of fatigue. Fatigue is part of the condition or illness we are living with, hence it becomes part of our lives, and it is important that we make health workers aware of its presence. We discussed our experiences of communicating to others about fatigue.</div>
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<span class="Apple-style-span" style="font-size: small;"><strong style="line-height: 16px; white-space: pre-wrap;">How do you communicate with others about fatigue?</strong></span></div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">Mary: </strong>I have given up trying to explain it to others. The blank looks and obvious responses such as ‘take a tonic’ or ‘rest up and you will be fine’, become just too depressing. The best way that has occasionally worked is that I feel like I have a really bad case of flu.</div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">Graham</strong></div>
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I don’t communicate about fatigue much because unless someone has experienced it, they simply cannot understand it. I avoid some outings; hide the fact that I am so tired although I would be more quiet than usual in company; and if I know people really well I might mention the fatigue but don’t dwell on it. I use avoidance of situations and techniques to hide how I am feeling.</div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">Di</strong></div>
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Thankfully my husband really “gets it” and understands fatigue, as he suffers it himself. To a lesser degree so do my children and grandchildren. Communicating my fatigue to others who have never really experienced or understood it is not so easy. I’ve come to recognise those who will at least try to understand and may explain how fatigue affects me if necessary. Many people just don’t get it and never will, so trying to communicate it is near impossible. In these instances I no longer waste my breath, but if I need to opt out of something due to fatigue, it’s rare that I mention it. I may simply say I’m not feeling well enough, I’m in pain or that I’m ill and not go into specifics.</div>
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I don’t communicate about fatigue much because unless someone has experienced it, they simply cannot understand it.</div>
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They can think what they like, but I know trying to explain this invisible fatigue and how it impacts on my life is useless with many people. Although some doctors also just don’t get fatigue, I still try to talk about its effects on my life, as it is a definite part of my condition.</div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">Chrispy</strong></div>
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I tell them that I am fatigued and tell them what fatigue means to me.</div>
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I just tell people I’m unwell and if they don’t like that then that’s their problem. I don’t feel I should justify that I’m fatigued because of all the disabilities I have. Some people think we are just lazy and don’t even try to understand because they can’t see any physical reason why we are fatigued. If I’m particularly bad pain wise it affects my gait and then they know why.</div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">Julie</strong></div>
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I don’t have to communicate with people who I’ve known for the 7 years since being sick, because they already know... they’ve seen it. But with new people I might mention that I won’t be able to stay long, and then they will quickly see in my posture and behaviour that I really am tired and not faking it. I don’t really communicate the experience other than if it comes up in conversation. When I’m talking to friends I rarely if ever talk about my health problems and how they’ve influenced what I’ve been doing lately. I’ll just tell them “what I’ve been up to”. If they ask me how I am I just say “been better, been worse” or “OK”.</div>
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It’s a shame that I don’t have anybody to talk to about it all, but I don’t want the rare phone call I get from friends to be cluttered with problems or complaining on my part. </div>
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<b>Iolanda</b></div>
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It is important to be able to discuss the impact of our conditions with people - and not only the fatigue aspect. It helps to present it as working out a problem rather than a complaint. So talk about how fatigue affects you, and find ways in which you (together) can manage it. I just tell people straight out that I’m not being lazy and that I’m not just tired. I tell them that I am fatigued and tell them what fatigue means to me. I explain that its like them being really, really tired but magnified about 1000 times and feeling like it 24/7 for sometimes months or even a year at a time.</div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">Andrew</strong></div>
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It is important that people I see regularly understand how it affects me. It is important that they accept that my absence is due to fatigue not unreliability or lack of interest. Where possible I tend to avoid people who don’t understand or accept this. I don’t bother with casual acquaintances etc. I just say I’m not well, or something like that. </div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">Helen</strong></div>
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Being assertive is helpful. I’ve learned to be transparent (hopefully without whining too much...) about the way I’m feeling so it takes the guesswork out of the equation. I like people to know when my functioning is not at a normal level - usually there’s a bit of forgiveness there if I behave like an idiot. But on the other hand, I hate to feel ‘cocooned’ by others on days I actually feel well. The hardest situation comes at work given I do not disclose my own health issues with patients. And sometimes the last thing I feel like doing is seeing them when I’m feeling unwell myself.</div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">Mari</strong></div>
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I talk and share the experience, I yell, I close myself away, I disconnect from the world.</div>
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<span class="Apple-style-span" style="font-size: small;"><strong style="line-height: 16px; white-space: pre-wrap;">Telling It Like It Is</strong></span></div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">We may feel isolated from others because they do not understand or support us with fatigue. Since fatigue is commonly experienced, and for some of us constant, this can be a heavy burden. The lack of understanding or acknowledgement of fatigue impacts on the way we feel about our self and our identity.</strong> There is a perceived level of mistrust around the experience of fatigue. As evident in our responses, we are aware of, and sensitive to, other’s judgements but feel we have little control over what others think. We talked about what we would like others to know about fatigue.</div>
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<span class="Apple-style-span" style="font-size: small;"><strong style="line-height: 16px; white-space: pre-wrap;">What do you want others to know about fatigue?</strong></span></div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">Graham</strong></div>
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I would like others to know that it is real not imagined.<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;"> It seems to directly relate to having a chronic illness; that it has not been researched thoroughly so therefore it is not understood by health workers to any extent; that it should be researched thoroughly; it is distinct from just being tired and needing a good night’s sleep; that people with fatigue can’t just snap out of it; it is not necessarily linked to depression at all; it is not necessarily linked to mental health at all.</strong> Fatigue is an energy sapping experience that depletes the body and mind of energy. Sometimes fatigue mounts up and it takes a while to recognise it’s impact e.g. finding it hard to be bothered talking a lot; or fussing about anything and also brain fog‚ can be part of this fatigue.</div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">Di</strong></div>
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Fatigue is both an invisible and insidious force that can lead to complete and utter exhaustion. <strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">Most people with chronic illness will suffer fatigue most of the time, to varying degrees.</strong> Other symptoms of illness will exacerbate fatigue. Recognising and accepting fatigue as a part of life, isn’t giving in or being weak and useless. Despite what many people may think it certainly isn’t all in the head but a real part of everyday life with illness. We need to limit and manage fatigue as best we are able and be willing to “stop” when fatigue gets too much.</div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">I want “normal” people to understand that it is totally out of our control and to wake up to the fact that some things are just unexplainable and to try and have compassion on the things they cannot see or understand.</strong></div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">Chris:</strong></div>
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The fatigue is real and is with me 24 hours a day. It’s more than just being tired since I can’t sleep it off. <strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">[I’d like people to know] that just because I can’t make it out to see them, to visit them or to join in with group activities, it doesn’t mean that I don’t miss seeing them.</strong> It doesn’t mean that I don’t want to see them. <strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">Please come visit me, or do something around where I live. And if we can’t meet up for a while, call me up because a phone call might brighten up an otherwise monotonous and lonely day.</strong></div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">Iolanda</strong></div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">It is important to be able to tell the difference between ‘emotional’ and ‘physical’ fatigue as ways to deal with them can be different. </strong>Getting out and doing something (such as exercise) can help with stress so ‘biting the bullet’ and doing something CAN actually help. If fatigue is a problem, work out what NEEDS to be done and what would be good to get done. Once everything that NEEDS to be done has been, then you have some flexibility to work around the fatigue. <strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">‘Relaxing’ or ‘Doing nothing’ are valid things to put on the list of things to do - we ALL need time to ‘recharge our batteries’.</strong></div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">Michelle</strong></div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">Having a nap when at work IS valid </strong>- although you need to make arrangements with your employer to do this (such as make up the time by working later). Tired people do not work very well so a half hour snooze can allow you to achieve more in the day. Employers are required to make reasonable accom- modations for your medical condition - it’s a case of working together to find the best overall solution.</div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">Andrew</strong></div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">I want others to know that it’s not just being lazy or being tired and it’s not an excuse to get out of something</strong>. Fatigue impacts on every single aspect of your life. It takes immense willpower to even get out of bed most days and that in itself is incredibly draining. </div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">Iolanda</strong></div>
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I want others to understand that is totally different from being tired; that it is different from “normal” people overdoing it; that a “good night’s sleep” won’t fix it. I also accept that some people will never understand.</div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">Helen</strong></div>
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With chronic illness, fatigue is a reality, sometimes a long-term one. It’s rarely about just being physically tired. So...Please be gentle but still let me be myself.</div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">Mari</strong></div>
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That it exists. It’s real. Most people living with a chronic illness manage it. Be curious about it, ask about it, talk about it.</div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">BRAIN FOG: </strong></div>
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One symptom that may or may not be experienced with fatigue has been called <strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">brain fog.</strong> Typically, our descriptions of brain fog include <strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">feelings of disorientation and disturbances to our thinking such as being unable to remember, inability to process information, being unable to think clearly or find words during a conversation.</strong> </div>
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The way brain fog is experienced can vary from person to person. <strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">Some of us feel like it is with us all of the time, and others have episodes similar to fatigue.</strong> Like fatigue, it is invisible, but may result in an inability to participate in life as fully as we would like. There is little information about brain fog, yet it is another common symptom associated with many chronic illnesses.</div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">Others may not understand about brain fog. It can leave us feeling personally inadequate especially when in a social situation. </strong>In a society where intellect is so highly valued, experiences of brain fog are often not understood. When it happens we are vulnerable to others’ misguided assumptions and judgements, and we can become sensitive to this. The anxiety about keeping brain fog hidden from others can raise feelings of self-doubt and lowered confidence. <strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">We may question our abilities and ourselves.</strong> Sometimes we may not have the energy or inclination to keep brain fog hidden but we have learnt not to give ourselves a hard time. <strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">Some of us have developed humorous ways of coping with brain fog. </strong>These include collecting brain fog stories to share with others and developing <strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">humorous ways of explaining brain fogginess in the presence of others. </strong></div>
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<span class="Apple-style-span" style="color: #990000;"><strong style="line-height: 16px; white-space: pre-wrap;">***A favourite way of explaining relates to the analogy of a malfunctioning computer. </strong><strong style="line-height: 16px; white-space: pre-wrap;">We wanted to share some examples that may be useful to you: </strong></span></div>
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• I'm sorry - I’m suffering from the mental equivalent of a computer virus and it’s deleted all the files on my brain’s hard drive. I can’t get anything in or get anything out!!’</div>
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• Ummm....my files have performed an illegal operation and need to be shut down....(lots of laughs!)</div>
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• ‘I’ll have to shut down as I’m suffering complete system overload.’</div>
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• ‘My brain’s anti-virus scanner couldn’t detect the latest worm virus, which has completely infected both my input and output functions.’</div>
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• ‘My brain doesn’t have enough memory chips to make the necessary downloads.’</div>
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<strong style="line-height: 16px; white-space: pre-wrap;">What is your experience of brain fog?</strong></div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">Graham:</strong> Brain fog is something I contend with daily. It is hard to determine the cause of the fog, it could be from fatigue, or lack of sleep or something all on its own. <strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">The fog makes it hard to think straight and if by chance you get a thought, it is hard to make it a coherent one, let alone convey it to others.</strong></div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">The worse I am feeling, the more fatigued and brain foggy I become.</strong> Brain fog is not being able to concentrate properly, deteriorating organisational skills, forgetfulness, word retrieval difficulties, often mislaying things etc. I used to be a very organised person and at work I took pride in the fact I could get through tasks in logical sequence, doing so efficiently and well. As my condition progressed my ability to work efficiently declined. <strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">I found myself having to write notes, to make sure I didn’t forget what I had done and what still needed to be done and I made progressively more mistakes.</strong></div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">Eventually I was too ill to work at all.</strong> The worse my brain fog the sillier and more forgetful I get. I may forget whether or not I have done some little task, within a few minutes of doing it. I can’t concentrate well enough to take in what I may be reading or listening to, without rereading it several times or asking people to repeat what they just said. If I am responding to messages on the computer, it may take me twice as long as usual and I’ll make many dyslexic type mistakes. <strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">I have trouble expressing myself and often can’t find the words or names I’m looking for.</strong> I tend to forget where I’ve put things, sometimes taking days to discover an object’s whereabouts.</div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">Mary: Through Internet support groups I’ve found that “brain fog” for want of a better term, is very common among people suffering chronic illness.</strong> By sharing our brain fog experiences, <strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">I no longer feel alone with this affliction </strong>and can see the funny side of these little lapses.</div>
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I’ve actually started collecting brain fog stories and when I have enough, I’ll share them with other members. Silly things like spending 10 minutes searching everywhere for my bright purple rubber gloves, only to discover I was wearing them all the time or the time I accidentally sprayed my husband with oven cleaner instead of insect repellent as they were in similar coloured pressure pack cans. Humour is an excellent way in helping to cope with brain fog.</div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">Chrispy</strong></div>
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To describe the way I actually feel with brain fog is slightly disoriented, a tad slower to think through things sometimes (as many people are when they are just tired or running around after toddlers all day),<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;"> perhaps not able to juggle lots of different activities and thoughts all at the same time, not able to concentrate for lengthy periods or staring at the computer screen or reading and my memory seems to work slightly differently. </strong>Also, it is somehow linked at times to fatigue and can be linked to having eaten food that does not agree with me.</div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">Di</strong></div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">I have ‘word retrieval’ problems particularly if I am tired, fatigued or if about a specific topic where I have to remember more sharply, and I feel as if my brain is searching. </strong>So I have to stop trying to think of the word and sometimes it just floats into my mind after a few minutes or sometimes it could be hours later. <strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">I find also that my brain sometimes finds a word that sounds the same but does not have the same meaning,</strong> my poor ol’ brain must have become desperate. It can be very frustrating if you want to have a really good conversation with someone about something. I find often people don’t want to talk about anything too ‘deep and meaningful’.</div>
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I think <strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">‘self doubt’</strong> comes from 1) not wanting to be seen as foggy by others AND more importantly, (2) also because it threatens in some way, independence, being able to cope and look after oneself. </div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">Also ‘self doubt’ makes you question yourself - is it brain fog? Does everyone else do this sometimes i.e. people who are not ill?</strong> Have you lost the plot? Were you always like this and hadn’t noticed and so it’s normal?? Does it mean you will forget really serious things? Maybe it doesn’t mean anything? Is my illness anything to do with it or is it happening anyway? The ‘self doubt’ jars your self-confidence a little and makes you feel a little unsure of yourself. That’s how I feel and they are the sort of things I think about.</div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">Helen</strong></div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">Brain fog is a classic symptom of Fibromyalgia that I also have. Its also a classic symptom of many other syndromes or chronic pain. I do know that if I haven’t had my B12 injection my coordination skyrockets out of control and I can’t put one foot in front of the other, my brain just can’t work it out. </strong>Same as forgetting where I put my glasses, what I went to the shops for, where am I going, dropping things, not remembering if I’ve actually used shampoo or if I am about to use it, forgetting what I was going to say next, the list goes on, forgetting if I’ve locked the door even though I just locked it, same as turning off the heater. <strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">Struggling to react appropriately to everyday situations is a constant effort which adds to our stress levels thereby causing other problems with our bodies because they break down under the constant stress.</strong></div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;"> Julie</strong></div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">Brain fog is frustration!</strong> It’s knowing exactly what you want to say or the particular word that you are trying to say and it just won’t come out. You have it in your head, you can picture it, but the signal from the brain to the mouth misfires and nothing happens. It’s about not remembering what you are/were doing or why you are going</div>
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somewhere. <strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">It’s constantly repeating yourself because you don’t remember that you have told that person the same thing over and over again. It’s frustration and fatigue and anger all rolled into one</strong>. It’s not being able to absorb what you are reading no matter how many times you read it.<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;"> It’s getting sidetracked</strong> from what you were/ are doing so easily. Not being able to have clear thoughts. Feeling foggy and muddled.</div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">Michelle</strong></div>
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Been experiencing it this morning - <strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">can only think about one thing at a time and generally have a bit of a short fuse (particularly if interrupted). </strong>I also don’t feel like doing that much either, or more accurately, I want to do things but don’t really feel like making the effort.</div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">What helps me to deal with it is to be able to do something with the hands, some light gardening or similar which keeps one occupied but doesn’t need the brain to be engaged.</strong></div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">Andrew</strong></div>
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I was thinking and referring to the self doubt that comes with a conscious awareness of my own fogginess, like the lack of clarity, the slowness of thought and processing although I can see it working in the opposite direction also. Although when I’m foggy I don’t think I have the capacity or energy to think how do I keep this fogginess to myself.</div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">Olympia</strong></div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">Brain fog is the feeling I have when I want to connect with everyday life, conversations, thought processes etc, but it seems like I’m separate from the real experience</strong>. It’s a dull or cloudy sensation where I lose concentration, become absent-minded and can’t ‘join the dots’. I’ve taken out insurance on my purse, keys, mobile phone etc, because I tend to lose them in brain fog moments. There’s also a peculiar sense of slowness both in my physical capacity to do things and in my cognition. I mostly experience brain fog with blood sugar extremes (low or high) or severe fluctuations between the two. Sometimes I also experience brain fog when I’m feeling overwhelmed with life and subsequently have no threshold to deal with any more ‘reality’. It is almost like a safety mechanism that steps in when my being has reached saturation and cannot process anything else.</div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">Our Message To You</strong></div>
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Your own awareness of fatigue and the activities, or the level of activity that can trigger fatigue are important in managing its impact in your life. If you can identify what might make fatigue worse for you, your daily activities may be adapted to minimise the impact.</div>
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<strong style="line-height: 16px; white-space: pre-wrap;">Some ideas are: </strong><br />
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• It is usual to feel cranky, sad, angry, and frustrated with an illness that causes extreme fatigue but if you feel this way over a period of time, let a health worker know because you may need help with depression.</div>
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• Use trial and error to find if the fatigue you experience has triggers. A daily diary maintained of a period of time might help you find triggers.</div>
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• Divide a big task into smaller ones. Allow yourself more time to complete things. </div>
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• Prioritise tasks so you decide those that are essential and those that can wait.</div>
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• Save some energy for things that bring you pleasure.</div>
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• Listen to and learn to trust your body. Rest when you body signals it needs it.</div>
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• Learn ways to enjoy restful periods and to nurture yourself with favourite music.</div>
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• Try avoiding heavy meals, alcohol, caffeine,and large quantities of junkfood.</div>
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• If it is possible for you, consider maintaining a level of activity and exercise.</div>
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• Talk with trusted other sabout how fatigue affects you so you may gain their understanding.</div>
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• Seek support groups either in your community or through the Internet.</div>
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• Focus on your achievements and strengths.</div>
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<span class="Apple-style-span" style="color: #333333;"> • </span><b><span class="Apple-style-span" style="color: #333333;">Use humour when you can. </span><span class="Apple-style-span" style="color: red;">(ONE OF MY FAVORITE COPING SKILLS!) </span></b></div>
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• If you feel your healthworker is not taking fatigue seriously, consider seeking a second opinion.</div>
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<strong style="line-height: 16px; white-space: pre-wrap;">Our Message To Health Workers</strong></div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">Fatigue is real and can have a profound impact upon people’s lives. </strong>When it strikes it can trigger and compound feelings of worthlessness and inadequacy.<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;"> It can emphasise the loss of control that people experience when living with chronic illness and trigger old grief emotions. </strong>For some it is the most difficult symptom to manage. People often feel misunderstood about how fatigue affects them. </div>
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Listen carefully when people with chronic illness describe their experiences of fatigue and affirm their story. They will be looking for signs of your reaction and beliefs about fatigue. <strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">Take fatigue seriously</strong>. Consider obtaining a medication review or if there is presence of infection or other aetiology that may be contributing to the exacerbation of fatigue. Knowledge of resources and groups within their community may be helpful. Consider talking with people about some of the suggestions we have made in the section above.</div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">About Us</strong></div>
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We are men and women who live with chronic illness. Our ages, sexuality, backgrounds and economic situations are diverse and these all impact on the way we experience illness. <strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">We are participants in an Australian research project that connects people living with long term illness through the Internet.</strong> Talking with each other on the Internet facilitates an opportunity to discuss issues related to our experience. We came together through being involved in a research project. Over time we have got to know each other through our email conversations. We feel strongly connected to a network of caring and support that carries us through the hard times and enables us to celebrate each other’s good times. Knowing that we can always tap into the understanding and support of others who live with chronic conditions is important in our approach to making sense of, and managing illness.</div>
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There has been a lot of discussion about chronic illness self-management promoted by health care professionals. <strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">Yet it has been estimated that between 95 percent and 99 percent of chronic illness care is given by the person who has the illness. In other words, we look after ourselves.</strong> On a day- to-day basis we are in charge of our own health, and the daily decisions we make impact upon our quality of life.</div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">We all have something in common: we live with a chronic illness. A chronic illness is one that persists over time without an easily definable beginning, middle and end.</strong> While the symptoms that accompany a chronic illness can usually be alleviated to some extent, the illness itself is not curable. <strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">What we share is that illness was an unexpected intrusion into our lives.</strong></div>
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Living with chronic illness brings many life issues to the fore. <strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">One of the primary experiences for us has been the realisation that our lives have changed, often permanently. Illness has disrupted our future plans.</strong> It has troubled our partners, family and friends when they realise the way in which illness has intruded on our collective lives. However, we are learning to deal with the many changes that the illness has bought to our lives.</div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">Over time we have come to realise that although there are differences among us, there are experiences in common too. </strong>Some of these experiences, such as pain or isolation, have made us feel alone in the past. We have learnt the value of hearing the ideas and perspectives of other people in similar situations, so we have worked together to develop this series of ten booklets. Not all of the people in this project have been able to contribute to the booklets. Rather, a group of eleven people has been consistently involved.</div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">About The Booklets</strong></div>
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We decided to share our experiences in a series of eleven booklets. The purpose of these booklets is to share some of our conversations about many interesting and difficult aspects of living with illness. Our conversations have been a safe place where we can seek understanding and support as we tackle the issues that confront us physically, emotionally, socially and spiritually. We are supporting each other by sharing information, emotional comfort and friendship. In these booklets we share our discussions.</div>
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The booklets are set out in question and answer format and are intended to connect you with our voices about our experience of living with long term illness. There are no right or wrong answers to these questions. Our answers reflect our current thinking and understanding about what it means to live with long term illness. Maybe you will find some experiences and ideas that are familiar to you or have meaning in the context of your life. We acknowledge that challenges are part of life and fall within the experience of all human beings. Given this, our experiences may also be helpful to people living without illness.</div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">About The Research Inquiry</strong></div>
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A three year research grant (2003-2006) from the Australian Research Council (ARC) was awarded to our research team. This was a collaborative project between The University of South Australia and the Research Unit, Royal District Nursing Service. The investigators are Professor Tina Koch, Dr Debbie Kralik and Dr Kay Price. Project Management Members are Kerry Telford, Professor Jim Warren, Gino Pignone and Natalie Howard.</div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">What Are We Researching?</strong></div>
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The main thrust of the research program has been to understand the ways that people make transitions or learn to live well with chronic illness. We are interested in ways that people can learn to incorporate the consequences of chronic illness into their lives and move on. How people learn to move on or make transitions is important to understand, and so this project aims to describe this transition. </div>
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<strong style="font-size: 11px; line-height: 16px; white-space: pre-wrap;">From Sandie: </strong>This was originally a PDF booklet put together by an Australian Research Team and I thought this one (there is a series) on Fatigue and Brain Fog was one of the BEST I have EVER read on what Lyme patients go through. I REALLY encourage you to read this when you have a chance. I spent about a half hour re-formatting it into a DOC form so we would have it here but the main booklet can be found at: <a href="http://www.chronicpainaustralia.org.au/files/Booklet%206%20-%20Fatigue.pdf" rel="nofollow" style="color: #3b5998; cursor: pointer; font-size: 11px; line-height: 16px; text-decoration: none; white-space: pre-wrap;" target="_blank">http://www.chronicpainaustralia.org.au/files/Booklet%206%20-%20Fatigue.pdf</a></div>
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</div>Sandiehttp://www.blogger.com/profile/04238939507752991559noreply@blogger.com0tag:blogger.com,1999:blog-2364916966708215476.post-7552404076373549472012-03-24T20:27:00.000-07:002012-03-24T20:31:32.758-07:00How to be sick. . . Adopt a furry friend! :)<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghKcGqIPvyMgkiHQC-Zosb5f2IN6qXeQQW7kh8SCsJpBie6_i5NXhhGZrgranNw3k9puq0porSKTujNAtdWdSHGajR-CU2MHdiLCQWiE8Shfg5ntl5d8Z_3PDjCKZEuHU9oknFlQ0iKg/s1600/leah+be+cute.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghKcGqIPvyMgkiHQC-Zosb5f2IN6qXeQQW7kh8SCsJpBie6_i5NXhhGZrgranNw3k9puq0porSKTujNAtdWdSHGajR-CU2MHdiLCQWiE8Shfg5ntl5d8Z_3PDjCKZEuHU9oknFlQ0iKg/s200/leah+be+cute.jpg" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My dog Leah! </td></tr>
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Studies show people with chronic illnesses benefit greatly from owning pets! But of course all of us pet owners already knew this! Great articles at this link:<br />
<a href="http://www.psychologytoday.com/collections/201203/the-pet-payoff">http://www.psychologytoday.com/collections/201203/the-pet-payoff</a><br />
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The Wonderful World of ‘Woof’ and Other Animal Pals</h1>
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Pets: the animal antidepressant. Mine? Cosmo who's made for love not for speed.</div>
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<span class="submitted" style="color: #666666; font-size: 11px;">Published on May 30, 2011 by <a href="http://www.psychologytoday.com/experts/victoria-maxwell" style="color: #666666; text-decoration: none;" title="View Bio">Victoria Maxwell</a> in <a href="http://www.psychologytoday.com/blog/crazy-life" style="color: #666666; text-decoration: none;">Crazy for Life</a></span></div>
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Cosmo. Not as in the eccentric character ‘Kramer' from the sit-com Seinfeld or an alternative name for the Universe. But ‘Cosmo' as in the best dog in the world (at least in my opinion). He is our 12 year old auburn-furred Doberman Lab with silly smiles and a relaxed disposition who grunts and snores while sleeping. He has a big bark, and absolutely no bite. And he is part of my ‘personal medicine' arsenal that helps maintain my mental health.<br />
Personal medicine is the non-pharmalogical things we do or have that help get and keep us healthy. Activities and choices I make in addition to the anti-depressant and mood stabilizer I take. Exercise, therapy, prayer, watching reruns of ‘Friends', good warm talks with Gord, my husband are just a few of mine. And Cosmo. He has been with me before I met Gord, but after my psychosis.<br />
It's not news that pets, of all kinds, have healing benefits for a variety of ills. Lowering blood pressure, reducing anxiety, boosting self-esteem, decreasing loneliness and inducing relaxation are only the beginning.</div>
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According to Alan Beck, ScD, director of the Center for the Human-Animal Bond at Purdue University, studies there have shown that petting a dog not only lowers the blood pressure of the individual, but the blood pressure of the dog as well.</div>
In addition, the University of New England in Australia conducted a study and found that "cat owners had fewer psychiatric disturbances than those without feline friends". (Psychology Today Magazine, Mar/Apr 2001)<br />
Pets, dogs in particular, offer an unconditional, often sloppy kind love that even the best of friends or family are hard pressed to provide. This constant of love can be very grounding for those us handling unpredictable mood disorders.<br />
What may not be widely known are the benefits of what are now called Psychiatric Service Dogs (PSD). Different than a pet, a PSD is properly trained for specific tasks and works with one person rather than being the ‘family' pet.<br />
A PSD provides more emotional assistance rather than physical (as in the case with other service dogs) for a person living with mental illness.<br />
Science hasn't studied the extent of effectiveness, but PSD owners attest to the benefits provided by their psychiatric service dog.<br />
PSDs can remind handlers to take medication, interrupt repetitive behaviors common with obsessive-compulsive disorder, ease paranoia with reality testing; some can even sense panic attacks and manias. For symptoms of depression, dogs are trained for persistent sadness with ‘cuddle, kiss and hug' commands as well ‘wake-up calls' at specific times for excessive sleeping.<br />
In 2002, Joan Esnayra, PhD., a geneticist who lives with bipolar disorder, established the Psychiatric Service Dog Society. Although not all people need, nor should they have a PSD, its interesting and exciting information.<br />
But it's not always the wisest choice to become a pet parent and sometimes just not realistic or even possible to become one.<br />
When I was still in the very acute stages of bipolar disorder - being responsible for catching my bus on time to get to my vocational rehab program was enough challenge. But as both my illness and life began to smooth out - I could consider a pet.<br />
Initially I moved out from my parent's home to live with roommates. I was still building my stamina for work as well as learning to live with others. It still wasn't time to find a furry companion, nor did I have the money.<br />
Then I made the leap to living on my own, and my pay cheque, along with my moods were steadier.<br />
I knew it would be too easy to isolate in my basement suite after work and on weekends. I could already feel the edge of loneliness creeping in. I needed to be proactive. And I knew now was the time for me to find an animal companion.<br />
I searched the SPCAs for months. apology out there to cat lovers, I lean toward the canine population. I took several dogs for walks. And thought long and hard about not just what kind of dog would be best for me, but what I could realistically offer a dog. The last thing I needed was to meet the forlorn eyes of a depressed dog when I came home from work.<br />
I thought about activity level, noise factor (I was renting), size, age, and my temperament. I knew I liked running and taking walks - but I didn't do this all the time. So a high activity dog wasn't going to be happy with me.<br />
When I saw I Cosmo for the first, honestly I thought he was sort of funny looking. He was ‘shacking up' with this other dog Boo-boo who dwarfed Cosmo. And frankly, Cosmo has sort of odd proportions and freakishly small feet. He reminds me of a wiener dog that's been enlarged. He's got a long body and somewhat squat legs. He's build for love not for speed.<br />
I took him for a walk and he kept checking in with me to make sure he was going in the right direction. He got along with other dogs. I couldn't handle conflict with other people, so dog were out of the question. I went away and thought about it - again.<br />
About a week later I returned his picture proudly displayed on the desk of the SPCA. He was the featured ‘DOTW' (Dog of the Week). There was his goofy muzzle grinning for the camera. He'd been in this SPCA for over 6 months, and three months in one in Abbotsford and no one had snapped him up. It was beyond me. But maybe some things are just meant to be.<br />
I asked to see Cosmo. And no sooner had they brought him out, than he plunked himself down on the linoleum, shamelessly showed me his belly and burped. It was love at first sight.<br />
After all the paper work was done, I went right out to buy him a purple leash and a leather collar. We had found each other. I don't know who was happier. Him or me?<br />
It took awhile to adjust to each other. I hadn't had a dog in decades. But it was a good process and he was easy to get to know. No sooner had he come home, than did he start nudging his way onto my bed. And I'm a sucker for a cute face and wet kiss. Well...you know what I mean.<br />
Sometimes however, it's just not the right time for a pet. Here are some suggestions to have some animal contact without having to become a "pet parent".<br />
1. Volunteer at your local animal shelter.<br />2. Visit a dog park. Most owners love talking about their pets.<br />3. Participate in ‘Paws for Cause' walk-a-thons. You don't have to be a pet owner, just an animal lover.<br />4. See if anyone in your neighborhood needs help walking their dog.<br />5. Offer to pet-sit for friends and family.<br />6. Walk in the woods. It's amazing the critters you'll see.<br />7. Put out a bird feeder. You may not be able to cuddle a wild bird, but its great way to start having some animal connections.<br />8. Feed the ducks at a marsh or park lagoon. Try to use bird seed, not bread. Bread has very few nutrients for birds.<br />9. Visit <a class="ext" href="http://www.selectsmart.com/" style="color: #333333; text-decoration: underline;" target="_blank">www.selectsmart.com</a><span class="ext" style="background-attachment: initial; background-clip: initial; background-color: initial; background-image: url(http://rsrc.psychologytoday.com/sites/all/modules/contrib/extlink/extlink.png); background-origin: initial; background-position: 100% 50%; background-repeat: no-repeat no-repeat; padding-right: 12px;"></span> The site offers a fun "Dog Selector Quiz", to help choose the best breed of dog, cat, what have you, for you based on size, activity, temperament, coat, etc.<br />
If you are thinking of getting a pet, consider these important questions before doing so:<br />
1.How much time do you have to devote to a pet? A dog might be too demanding, whereas a cat or fish might be more suitable.<br />2.If renting, does your building allow pets? What kinds?<br />3.Will you be moving in the near future where pets won't be allowed?<br />4.Do you have the money to keep your pet healthy? Some pets cost more to ‘keep' than others.<br />5.Do you need a pet that doesn't shed? Do you have allergies?<br />6.Do you have roommates or children? Will a pet be a problem for them?<br />7.Are you healthy enough, emotionally ready and willing to care for an animal for the next decade? Dogs and cats and can easily live for 10 - 15 years.<br />
When the time was right and I had asked myself all the questions I needed to and answered them honestly, there was only one left: would my next boyfriend like dogs?<br />
The answer is yes. Gord (who is no longer my boyfriend, but my husband) loves Cosi-moto (as we call him sometimes). And if Gord hadn't? Well, that's a no-brainer. The dude or the dog? The dog always wins. Thank goodness I didn't have to make that decision.<br />
© 2011 Victoria Maxwell<br /><a class="ext" href="http://www.victoriamaxwell.com/" style="color: #333333; text-decoration: underline;" target="_blank">www.victoriamaxwell.com</a><span class="ext" style="background-attachment: initial; background-clip: initial; background-color: initial; background-image: url(http://rsrc.psychologytoday.com/sites/all/modules/contrib/extlink/extlink.png); background-origin: initial; background-position: 100% 50%; background-repeat: no-repeat no-repeat; padding-right: 12px;"></span><br />
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</div>Sandiehttp://www.blogger.com/profile/04238939507752991559noreply@blogger.com0tag:blogger.com,1999:blog-2364916966708215476.post-70257438572335356982012-03-24T01:29:00.000-07:002012-03-24T01:29:56.657-07:00I'm back after a long break from blogging!<div class="separator" style="clear: both; text-align: center;">
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Hi all, sorry its been about 5 months (wow!) since I last wrote. To my credit, I had some issues when Google made some changes to the blogging site and I was always too tired to fix it so I was able to log back in properly! Now that I'm back on track, I'll try and update more often. So much has happened since I last posted.<br />
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Back in November, I was just finishing up my 1st round of IV Rocephin antibiotics and was at about 4 months when I decided to take "a break". I was showing quite a lot of progress and actually my LLMD wanted me to keep going. But although the IV antibiotic treatment did more for me in 4 weeks for my severe nerve pain throughout my body and ability to walk then some of the top "specialists" at UCSD, I had been through so much pain for so long, that I clenched my teeth so hard that I cracked SIX of my teeth! I was in THAT much pain for so long without relief! I was having so much tooth pain that I HAD to stop the IV treatments to get some dental work done - I had to make a choice - one or the other - I couldn't afford both. Turns out I needed a root canal (more on that later, but let's just say that was the worst decision I could have made). But I was feeling SO much better after 4 months on IV Rocephin. I still had lots of other symptoms, joint pain, fatigue, brain fog, etc. but to FINALLY have relief from that horrific nerve pain and to be able to walk better again without fear of falling, was wonderful.<br />
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Unfortunately, within about 2 week? after stopping the IV abx, I began to relapse and within a few more weeks, many of my more severe symptoms returned and THIS time, I now had a constant 24/7 migraine headache which started a week after I had my root canal. This headache (which I had a brain MRI - normal of course) would send me from doctor to specialist after specialist and although the migraines reduced after about 3 months to "constant headaches" now - it was still debiliating. My dentist and endodontist kept sending me back and forth to one another claiming that the root canal could not possibly have anything to do with my sudden migraines. Really? Awful big coincidence then! 5 months later, I found a headache specialist who charged me $450 to tell me that I had occipital neuralgia and a whole bunch of other very "technical sounding terms" but basically said that when they did the root canal, BECAUSE of my Lyme, I had some very "angry and inflamed nerves" (no kidding) and he needed me to do a 3D topography imaging scan for another $750 so he could see what the regular dental x-rays couldn't. He also wanted me to travel the 45 minute drive to his office each day for a week to try an experimental light laser device that you hold to your head for 6 minutes and then leave. I'm on SSDI and have no insurance. I couldn't afford any of this, and at this point after waiting all this time to SEE this specialist, I had to admit my headaches WERE getting more tolerable. Still not great, but very slowly, after 5 months, they were starting to subside. So I didn't go back and 6 months after it started, it seems like my nerves have FINALLY calmed down. Now I'm having pain on the other side of my mouth and am deathly afraid of going back to the dentist. At this point, I'm inclined to tell them to just extract the tooth and be done with it!<br />
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The good news is, I restarted my IV antibiotic treatments 6 weeks ago and sure enough within the first 4-5 weeks, just like the last time, my symptoms started to improve, I began to use my walker less and less and could get around more with just my cane. 2 weeks ago was my birthday "week" and the planets must have aligned because my symptoms were at an all time low - I felt great, had energy and little pain and was able to go out and have several birthday celebrations with friends that I haven't been able to see in a very long time. It was was absolutely wonderful. The following week, for some reason, I started having another Lyme flare up and have been in bed a lot for the past week, but I've learned so much from this journey that I don't PANIC anymore when this happens. After all, to have had ONE FULL WEEK of feeling pretty good was amazing for me and the bad days are getting less frequent and the good days are lasting longer. I am on a ton of herbal supplements right now to try and help my immune system, to keep my liver detoxed, to help me with energy and VERY high amounts of Probiotics and Nystatin to keep my gut flora in check since I'm on long term antibiotics. Lyme is such a roller coaster ride and I've learned a lot of useful tools to keep myself from getting depressed about my situation.<br />
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The two biggest symptoms I'm dealing with right now are the continued "brain fog" (difficulty concentrating, memory loss, etc.) and joint pain in my hands which make it hard to type on the computer for long periods. The intermittent pain I can usually handle - since I've been through the most horrific pain imaginable, I think I can handle pretty much anything at this point.<br />
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My online Lyme support group friends have become my new family and have provided so much encouragement and support that I feel so grateful to have found this particular group. We are all there for one another and when you're stuck at home and bed bound quite often, it's a MUST to have that connection with others.<br />
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I'm going to wrap this up for now although I feel like I have so much more to say after a 5 month absence, but my fingers hurt and I need to try and get some rest.<br />
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I am sending out good healing energy to everyone tonight and hope to talk again soon.<br />
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Big Hugs,<br />
"Sandie"Sandiehttp://www.blogger.com/profile/04238939507752991559noreply@blogger.com0tag:blogger.com,1999:blog-2364916966708215476.post-696980551124697542011-11-20T22:46:00.000-08:002011-11-20T22:50:59.746-08:00Month Four of IV Rocephin<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFlO7EDgyfY34zQOMFtxllGfwWgmoe9kZISGl_t0kbHJFFsV6RK7ckfsq8g5rEl0TBwtL24PyLowURtRTTIrpde_SDrTUOID3YV1ChrBo18OOuxaHBrTWPNNDwrZRs2Xuf7WD3nEq11Q/s1600/IV+bag+pic.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFlO7EDgyfY34zQOMFtxllGfwWgmoe9kZISGl_t0kbHJFFsV6RK7ckfsq8g5rEl0TBwtL24PyLowURtRTTIrpde_SDrTUOID3YV1ChrBo18OOuxaHBrTWPNNDwrZRs2Xuf7WD3nEq11Q/s1600/IV+bag+pic.jpg" /></a></div>I'm into Month Four of my IV Rocephin antibiotics. The good news is that I've noticed some symptoms have really improved from four months ago - mostly with the severity of my nerve pain. I'm also noticing that my word recall is getting better, though I still suffer from "Brain Fog", it's just not AS bad as it was a year ago! I can fill out forms on my own more and more without having my daughter come over to help me.<br />
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I seem to be sleeping better - instead of either 14 hours a day or some months where I couldn't sleep more than 4 hours a night - it seems more regulated now.<br />
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My legs are not as weak as they were, although I still have ups and downs. Some days I can go out with my cane, other days I still have to use Pink Floyd (my pink walker!)<br />
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Unfortunately I had a recent herx when I went to double my Tindamax though. Am pulsing Tindamax 2 weeks on, and 2 weeks off. I'd only been taking one a day (500 mg) and my LLMD wanted me to double that. Within a day of taking TWO pills per day, I began to get mind crushing migraines in my skull and I was incapacitated for days. It was awful. I knew it was a Herx when the second night, my fevers returned (100.5) and I just felt so crappy. I stopped taking the Tindamax and the migraines are started to ease up. I'd had a migraine for 5 days at that point. It was so bad, that I couldn't even push my glasses up on my head - within seconds, I would feel pain from the slight pressure of the glasses on my head! So, I'm going to give my body a chance to recover from this and will try again in 2 weeks - this time, will just take a dose and a half to see what happens.<br />
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I can't believe I'm coming up on my two year anniversary of Lyme Disease in January. So hard to comprehend that the life I once knew and completely took for granted, is no longer. Yes, I tell myself that I will get my life back, but more and more, I'm starting to realize that it will never be the same. I don't even know if I can get back into the career that I spent years in school for, tons of money in student loans, absolutely loved with a passion. . . it's hard to say if I'll ever be able to do that again.<br />
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Looking to my future that is completely unknown and uncertain is a scary thing, but I'm going to remain optimistic and just be open to what life has in store for me. As I recently posted, I'm seeing the light at the end of the tunnel, and for once, it's not a train! :)<br />
XXOOSandiehttp://www.blogger.com/profile/04238939507752991559noreply@blogger.com3tag:blogger.com,1999:blog-2364916966708215476.post-19471844540301518332011-10-22T02:35:00.000-07:002011-10-22T02:35:25.064-07:00Quick UpdateWell, I'm into month THREE of my IV Rocephin antibiotic treatments (3 times a week at the doctors office) and am happy to report that my severe peripheral neuropathy seems to be better. I am no longer at a pain scale of a TEN - more like an intermittent 4 to 7 depending on the day. Trust me, this is a HUGE improvement from where I was. I am no longer shopping for wheelchairs - am still using my walker and cane, but my legs DO feel stronger than they were before I started the IV Rocephin. Unfortunately I still have many of the other symptoms (joint pain, bone pain, extreme light sensitivity, brain fog, etc. etc.) but when you've been so sick and you're ready to call 911 because you're so incredibly sick, that ANY improvement feels like a miracle! :) I know I'm impatient and it's hard because just when I feel like I'm turning a corner, I will "backslide" a bit and have a bad week of symptoms. Then I start worrying that I will go back to where I was, and I just have to remind myself to be patient and know that I'm doing everything I can to help heal my body. Once again, Lyme has proven to be one of the biggest challenges I've ever faced and I know it's so hard for my non-Lyme friends to understand what it's like. My best friend had Lyme before I got sick and I had absolutely NO idea what she was going thru until it happened to me. Anyway, I'm still plugging along, still trying to stay sane and positive and just hoping, HOPING, that one day this will all be a distant memory. Am so grateful for the support groups I'm a part of and also grateful to those of my non-Lyme friends who have stuck with me through this.Sandiehttp://www.blogger.com/profile/04238939507752991559noreply@blogger.com0