My Plasma Donation for a Lyme Research Study

See that yellow canister to the left?
Thats MY PLASMA! Already separated from my blood. 

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! 

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.

My very nice tech looking on - she was quite good and I barely
felt the needle going in! That's the sign of a good tech!

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! :)

(Also....Some patients DO report a "Euphoric" feeling when they donate plasma - maybe that's why I'm so "happy" looking! 

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. 

New York Times Article: When Lyme invades the brain and spinal system

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" 

Personal Health; When Lyme invades the brain and spinal system.

By Jane E. Brody
Published: February 15, 1995

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.

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.

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.

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

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.

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.

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.

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.

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.

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.

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.

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.

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

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.

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.

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.

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.

Great news!
LymeTap 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: Lyme Tap Site

(www.lymetap.com)

Lyme Victims Depend on Each Other (Martha's Vineyard Support Group)

LYME VICTIMS DEPEND ON EACH OTHER

By OLIVIA HULL

Lyme disease support group offers sympathetic ears and educated referrals to doctors.

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.
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.”
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.”

Phoenix Becker is an organizer of the support group.

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.
“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.
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.
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.”

Sam Hiser.

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.
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.
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.
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.”

Jay Boden.

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.”
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.

But even after dealing with what they think is Lyme for decades, patients like Ms. Becker remain hopeful about their prognosis.
“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.”
“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.”
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.

Full article can be found at:  Martha's Vineyard Gazette - Lyme Support group article

How to Deal with Candida OR Lyme Toxin Die-Off

What is Candida Die-Off?

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) 

• What is Die-Off?
  Learn how your Candida treatment could result in a Die-Off reaction, and how to recognize the symptoms of Candida Die-Off.

Supplements to help with Die-Off

• Vitamin C
  Vitamin C (ascorbic acid) restores your adrenal function and helps to boost your immune system.
• Milk Thistle
  This herb contains a compound that helps to repair damaged liver cells and protect them from the toxins released in Die-Off. (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) 
• Swedish Bitters
  Swedish Bitters are an excellent digestive support. They also help to regulate your stomach acidity and support your liver function. (Have actually never tried these so let me know if they work! - B) 
• Detox Drops
  Detox Drops is a supplement that promotes the healthy functioning of your liver and the elimination of toxins from your body.

Other ways to reduce your Die-Off symptoms

• Alternative Detox Methods
  This page summarizes the different alternative detox methods that you can try. The pages below go into more detail.
• Skin Brushing
  Your skin is responsible for up to 15% of toxin elimination. Skin brushing enhances this process and improves your circulation too. (I HIGHLY recommend this method of detoxing - I've done this myself and it really DOES work! - B) 
• Contrast showers
  Contrast showers boost your lymphatic system and improve your circulation. They have long been used as an alternative remedy for the common cold. (Note: I'm not familiar with  contrast showers so when I try it out, I'll give you my opinion! - B) 
• Exercise and Candida
  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.
• Rebounding (aka Mini Trampolines) - 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) 
• Sauna
  Sauna improves circulation and helps you flush out toxins through sweating. This page tells you what type of sauna works best. (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) 

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, Alka Seltzer Gold and/or Benadryl can take the edge off when you're feeling the effects of bacterial load die off. I always keep some on hand!  

Also - the article above did not mention EPSOM SALT BATHS. 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) 

What is Lyme? Where to Start for Newbies

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"? 

http://whatislyme.com/where-to-start-lyme-info-for-newbies/

Lyme and Co-Infection Symptom Chart

Just 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: http://www.lyme-symptoms.com/LymeCoinfectionChart.html

Personal update: June 3, 2012

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. 

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.

This is me on a "typical day" Too sick to get out of bed!
(Sorry the pic is so blurry!)

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.

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.

See - some days I actually have GOOD DAYS! It helped
that my BFF was visiting - really lifted my spirits! People
see me like this and think "She doesn't look sick at all!"
If they only knew. . . .

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.

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".

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.

Best,
Bonni aka Sandie

ABCs 20/20 show to air segment on Lyme. Friday, May 18, 2012

**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**

TOUCHED BY LYME: 
Teen with Lyme will be featured on ABC’s 20/20 show
16th May 2012
 
Her YouTube videos caught the attention of ABC news.

Elaina P. is a New Hampshire high school student who has been blogging about her experience with Lyme disease since 2008.

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:

“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.”
The show will air this Friday, 10 pm, on ABC News.

Click here to see Elaina’s blog and view her videos.

TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s VP for Education and Outreach. Contact her at dleland@lymedisease.org.
http://lymedisease.org/news/touchedbylyme/lyme-teen-2020.html
.

New Lab Testing & Awareness to Attack Lyme in California

NEW LAB TESTING AND AWARENESS TO ATTACK LYME IN CALIFORNIA

by Luanne Bradley on May 10, 2012 in NEWS & CULTURE

(Full article at:  http://ecosalon.com/new-lab-testing-and-awareness-to-attack-lyme-in-california/)

A new Borrelia Culture and awareness may increase Lyme Disease literacy in California just in time.
“I’m testing three patients for it right now,” says Dr. Todd Maderis, a leading naturopath running the Marin Natural Medicine Clinic 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.

“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 Advance Lab in Pennsylvania has just released a new Borrelia Blood Culture 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.

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.

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 IGeneX, inc. Lab 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.”

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.
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.

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, Under our Skin, directed by Marin filmmaker Andy Abrahams Wilson of Open Eye Pictures.

“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.
Both the film and new books such as Out of the Woods 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.

In terms of treatment guidelines, Maderis and other Lyme literate doctors look to the International Lyme and Associated Disease Society (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.

In the meantime, the public must focus on avoidance. That’s why May isLyme disease awareness month, 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.

“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 educationalwebsite. “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.”

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.
“If you do find a tick, remove it and place it in a Ziploc bag with a moist cotton ball and send it to IGeneX for a diagnosis,” Maderis recommends.

In recent weeks, researchers speculated that the direct and indirect effects of global warming 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.

“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 Yale School of Public Health. “Climate change could be reverting that and therefore increasing production of ticks.”

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.”
Images: San Diego Lymer; Lyme Disease.Org; Medicalpicturesinfo

Lyme Forum in Saratoga Springs, NY on May 21st!

EVENT: “A Forum on Tick-borne Diseases–What Next?”

2nd April 2012

 

Click above to share articles

New York Congressman Chris Gibson is hosting a public forum about Lyme disease in Saratoga Springs, NY, on May 21.

From the Lyme Action Network:

Congressman Chris Gibson Invites You to Attend
A Forum on Tick-borne Diseases – What’s NEXT?
Monday, May 21, 2012
Zankel Music Center, Skidmore College, Saratoga Springs, NY

AN INVITATIONCongressman 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 A Forum on Tick-Borne Diseases – What’s NEXT? 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.

Pamela Weintraub, renowned author of Cure Unknown, and Executive Editor of Discover, will be the keynote speaker for this event.

PRESENTERS INCLUDE:

Dr. Richard Horowitz, 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.

Lorraine Johnson, 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.

Holly Ahern, 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.

Dr. Daniel Cameron 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.

Additional speakers will be announced as confirmed.  Registration information will be posted soon…stay tuned…

Please plan to attend!  We need you to come – TO BE VISIBLE! 

Click here for more information.