Hi all, sorry it's been a while since my last post. I am still struggling with the severe fatigue that hit me in March when I had that terrible sinus infection and it's now June - STILL have the fatigue. I now get congested a lot and at least a few times a week, I feel pressure pain in my cheekbones - definitely sinus related. I've gone my whole life without a sinus infection or ANY allergies and since getting Lyme, it plagues me all the time. Apparently I"m not alone - I've heard of many other Lyme patients who are plagued with sinus infections. I'd love to know why that is.
My Dad is visiting me again from Virginia - such a great help when he's here. So far he's fixed some items around the house (my exhaust fan in the bathroom hadn't worked in 2 years and he fixed it! yay!)
I'm in the process of going through another round of blood tests to FINALLY test for co-infections and am also going to do the CD57 Lyme test. (More info on CD57 Lyme Test.) I tested positive for the Western Blot IgG last year thru IgeneX Labs, but that was the only test I've had so far. My LLMD is convinced I have Bartonella and possibly Babesia too, so I'm hoping it will show up on the test.
Wish I had more energy to post something more interesting right now but I'm exhausted as always! Hope everyone is doing well and I hope to be back here soon!
Showing posts with label Lyme. Show all posts
Showing posts with label Lyme. Show all posts
Sunday, June 12, 2011
Thursday, May 5, 2011
Under Our Skin is (FINALLY) on Netflix Instant Watch!
Finally! The beautifully filmed documentary, Under Our Skin, is now available on Netflix Instant Watch.
"A gripping tale of microbes, medicine & money, UNDER OUR SKIN exposes the hidden story of Lyme disease, one of the most serious and controversial epidemics of our time. Each year, thousands go undiagnosed or misdiagnosed, often told that their symptoms are all in their head. Following the stories of patients and physicians fighting for their lives and livelihoods, the film brings into focus a haunting picture of the health care system and a medical establishment all too willing to put profits ahead of patients."
For more information go to: Under Our Skin Documentary
Friday, April 15, 2011
Weird Rash on my Hands
Monday, April 4, 2011
Pain in areas of lymph nodes
You know how when you have a bruise on your arm, and you press down on it? (Or when you were twelve years old and your bratty younger brother pressed down on your bruise and says "DOES THIS HURT?!!! LOL!) Anyway - that's what it feels like!
So I started wondering if I was developing Fibromyalgia type symptoms on top of Lyme. I've read lots of other posts about Lyme patients who ALSO had FM. I started a post about this on one of the forums and someone wrote back that there are lymph nodes in those areas.
I went and found a diagram of the lymph nodes and BINGO! all those areas are EXACTLY where I'm sore! So now I'm wondering if I have a buildup of lymphatic fluid or tissue or whatever it is that accumulates in those areas.
I'm researching ways to "Drain Lymphatic Fluid". One great way is to use a rebounder which I got for my birthday so I think I need to double my time on it every day! I've also heard that you can get Lymphatic Massages which can help drain fluid.
Anyway, I just thought it was really interesting and a topic that I will hopefully learn more about and can share with others.
Hugs!
Friday, April 1, 2011
Lyme Disease Epidemic in Virginia: "Largely Ignored"
Lyme Disease: Epidemic ‘Largely Ignored’
Governor’s Task Force on Lyme disease hears stories of loss, pain and frustration.
By Victoria Ross
Thursday, March 31, 2011
Tricia Platas, a Springfield mother of four, sat in front of Gov. Bob McDonnell’s Lyme Disease Task Force on Tuesday, March 24, clenched her hands together, and testified about losing her 9-year-old daughter, Amber Marie, to Lyme disease.
“It was a few months after her ninth birthday when we really knew something was wrong,” Platas said. “She woke up one morning in so much pain that she could not walk to the bathroom. This was a little girl who loved to laugh, loved to sing and dance, Amber was the light of our lives.”
Platas cried when she told the panel and 120 attendees how desperate she was to make the many doctors she saw with Amber to take her daughter’s “mysterious” illness seriously. In her frantic search for a cure, she took Amber to a doctor who strapped the little girl to a bed, and waved foul-smelling oils in her face. “Amber was screaming. I just can’t believe anyone would do that,” she said.
“I wanted them to treat my little girl right, so I wouldn’t always ask the right questions, or demand answers. I feel terrible about that,” she said. “You have to push for answers.”
Amber Marie Platas died on April 22, 2002, at Children’s National Medical Center.
Platas was one of 25 area patients and caregivers who testified about their experiences with Lyme disease at Immanuel Bible Church in Springfield. They shared stories of pain, fear and fatigue with the eight-member panel of health department officials and legislators’ representatives. It was the fifth public testimony hearing about the spread of Lyme disease in the Commonwealth.
Led by Michael Farris, chancellor of Patrick Henry College in Purcellville, the task force will propose recommendations to the governor after its final hearing April 25. Farris’ wife and seven of his 10 children have been diagnosed with Lyme disease. The task force is comprised of physicians, wildlife officials, veterinarians and other experts.
According to the Centers for Disease Control and Prevention (CDC), 900 new cases of Lyme disease were reported in Virginia in 2009, a number the CDC acknowledges could be ten times higher due to under-reporting and inaccurate diagnostic tests. In Fairfax County, 250 cases were reported last year, according to the Fairfax County Health Department.
A deer tick takes about 36 hours to transmit Lyme disease, according to the CDC. The longer the disease goes undiagnosed and untreated, the greater the chances are for brain, heart and joint problems.
“We’re here tonight to listen to people’s stories, hear their recommendations and advocate for more public awareness and education,” Farris said.
“Lyme disease is dramatically misdiagnosed, and there is too much denial by doctors that chronic Lyme does not exist,” Farris said.
Mikey Pedersen, a 14-year-old Vienna resident, told the panel that his case of Lyme disease went undiagnosed for a year despite seven doctor visits. He said doctors attributed his symptoms to growing pains. The delayed diagnosis allowed Lyme and co-infections to spread throughout his body causing rashes, severe joint pain, and fatigue.
Kristina Sheridan, a Vienna mother of a teenage daughter with Lyme disease, told the panel her family spent four years seeing 30 doctors, visiting seven hospitals and receiving more than 15 diagnoses before they found a team of doctors determined to get her daughter well.
She gave the panel a list of specific recommendations for the panel to consider, including spraying the edges of school fields and soccer fields with Permethrin, an insect repellant, to kill ticks as well as West Nile Virus.
"I've no doubt both my kids got bitten by ticks on soccer fields,” she said. Sheridan also said parents of children diagnosed with Lyme need to understand the process for Special Education Certification for “other health issues.”
“This certification provides families and the school with the flexibility needed to handle the waxing and waning symptoms, the additional days of absence,” Sheridan said.
Sarah Beasley, a 29-year-old Fairfax woman, told the panel that she is living proof chronic Lyme exists. In 2000, she was a senior at James Madison University and participated in Army ROTC for fun. But then she started having serious muscle and joint pains.
“As soon as each day was done, I’d limp to my apartment and crash into bed,” she said. “My whole life, I had been a six-hours-kind-of-sleep-girl. Suddenly, I would sleep for 13 hours and wake up feeling like I had been hit by a Mac truck.” After 10 years and more than 10 different doctors, Beasley, the director of a local education association, said she is on the path to wellness.
At the end of her testimony, she dumped out a large bag of medications, herbs, supplements and vitamins. “Please understand that it takes all of these to keep me going in the way that I need to function,” she said. “Without them, I will be that girl that is confined again to the downstairs couch.” She added that she wants the panel to encourage research and protect doctors who actually understand “this spreading, debilitating disease.”
“These heartrending cases of misdiagnosis, financial ruin, and social isolation are difficult to hear as we travel throughout Virginia,” Farris said. “But it is important to gather first-hand testimonies about the personal impact of long-term illness. One of our most important goals is to allow people to be heard.”
“I was so moved by all the stories given at the meeting that night,” Platas said in an interview after the three-hour hearing. “It saddens me to see how many people are still being made sick by this horrible little bug.
Supervisor Pat Herrity (R-Springfield) attended the hearing, and has listed Lyme Disease Awareness as one of his priorities.
“We have an epidemic that we’re largely ignoring,” he said, adding that he hopes the panel considers that one of their recommendations should be to pass legislation similar to that enacted in Connecticut, where doctors are allowed to prescribe extended doses of antibiotics without fear of malpractice lawsuits.
“For Swine Flu, we went on full red-alert, but more people are afflicted with Lyme disease, and it’s time we take it seriously,” Herrity said.
Those who did not attend the hearings, but want to share how they’ve been affected by the disease may e-mail Farris at lyme@phc.edu.
(This article edited for content limitations)
Thursday, March 31, 2011
Tricia Platas, a Springfield mother of four, sat in front of Gov. Bob McDonnell’s Lyme Disease Task Force on Tuesday, March 24, clenched her hands together, and testified about losing her 9-year-old daughter, Amber Marie, to Lyme disease.
“It was a few months after her ninth birthday when we really knew something was wrong,” Platas said. “She woke up one morning in so much pain that she could not walk to the bathroom. This was a little girl who loved to laugh, loved to sing and dance, Amber was the light of our lives.”
Platas cried when she told the panel and 120 attendees how desperate she was to make the many doctors she saw with Amber to take her daughter’s “mysterious” illness seriously. In her frantic search for a cure, she took Amber to a doctor who strapped the little girl to a bed, and waved foul-smelling oils in her face. “Amber was screaming. I just can’t believe anyone would do that,” she said.
“I wanted them to treat my little girl right, so I wouldn’t always ask the right questions, or demand answers. I feel terrible about that,” she said. “You have to push for answers.”
Amber Marie Platas died on April 22, 2002, at Children’s National Medical Center.
Platas was one of 25 area patients and caregivers who testified about their experiences with Lyme disease at Immanuel Bible Church in Springfield. They shared stories of pain, fear and fatigue with the eight-member panel of health department officials and legislators’ representatives. It was the fifth public testimony hearing about the spread of Lyme disease in the Commonwealth.
Led by Michael Farris, chancellor of Patrick Henry College in Purcellville, the task force will propose recommendations to the governor after its final hearing April 25. Farris’ wife and seven of his 10 children have been diagnosed with Lyme disease. The task force is comprised of physicians, wildlife officials, veterinarians and other experts.
According to the Centers for Disease Control and Prevention (CDC), 900 new cases of Lyme disease were reported in Virginia in 2009, a number the CDC acknowledges could be ten times higher due to under-reporting and inaccurate diagnostic tests. In Fairfax County, 250 cases were reported last year, according to the Fairfax County Health Department.
A deer tick takes about 36 hours to transmit Lyme disease, according to the CDC. The longer the disease goes undiagnosed and untreated, the greater the chances are for brain, heart and joint problems.
“We’re here tonight to listen to people’s stories, hear their recommendations and advocate for more public awareness and education,” Farris said.
“Lyme disease is dramatically misdiagnosed, and there is too much denial by doctors that chronic Lyme does not exist,” Farris said.
Mikey Pedersen, a 14-year-old Vienna resident, told the panel that his case of Lyme disease went undiagnosed for a year despite seven doctor visits. He said doctors attributed his symptoms to growing pains. The delayed diagnosis allowed Lyme and co-infections to spread throughout his body causing rashes, severe joint pain, and fatigue.
Kristina Sheridan, a Vienna mother of a teenage daughter with Lyme disease, told the panel her family spent four years seeing 30 doctors, visiting seven hospitals and receiving more than 15 diagnoses before they found a team of doctors determined to get her daughter well.
She gave the panel a list of specific recommendations for the panel to consider, including spraying the edges of school fields and soccer fields with Permethrin, an insect repellant, to kill ticks as well as West Nile Virus.
"I've no doubt both my kids got bitten by ticks on soccer fields,” she said. Sheridan also said parents of children diagnosed with Lyme need to understand the process for Special Education Certification for “other health issues.”
“This certification provides families and the school with the flexibility needed to handle the waxing and waning symptoms, the additional days of absence,” Sheridan said.
Sarah Beasley, a 29-year-old Fairfax woman, told the panel that she is living proof chronic Lyme exists. In 2000, she was a senior at James Madison University and participated in Army ROTC for fun. But then she started having serious muscle and joint pains.
“As soon as each day was done, I’d limp to my apartment and crash into bed,” she said. “My whole life, I had been a six-hours-kind-of-sleep-girl. Suddenly, I would sleep for 13 hours and wake up feeling like I had been hit by a Mac truck.” After 10 years and more than 10 different doctors, Beasley, the director of a local education association, said she is on the path to wellness.
At the end of her testimony, she dumped out a large bag of medications, herbs, supplements and vitamins. “Please understand that it takes all of these to keep me going in the way that I need to function,” she said. “Without them, I will be that girl that is confined again to the downstairs couch.” She added that she wants the panel to encourage research and protect doctors who actually understand “this spreading, debilitating disease.”
“These heartrending cases of misdiagnosis, financial ruin, and social isolation are difficult to hear as we travel throughout Virginia,” Farris said. “But it is important to gather first-hand testimonies about the personal impact of long-term illness. One of our most important goals is to allow people to be heard.”
“I was so moved by all the stories given at the meeting that night,” Platas said in an interview after the three-hour hearing. “It saddens me to see how many people are still being made sick by this horrible little bug.
Supervisor Pat Herrity (R-Springfield) attended the hearing, and has listed Lyme Disease Awareness as one of his priorities.
“We have an epidemic that we’re largely ignoring,” he said, adding that he hopes the panel considers that one of their recommendations should be to pass legislation similar to that enacted in Connecticut, where doctors are allowed to prescribe extended doses of antibiotics without fear of malpractice lawsuits.
“For Swine Flu, we went on full red-alert, but more people are afflicted with Lyme disease, and it’s time we take it seriously,” Herrity said.
Those who did not attend the hearings, but want to share how they’ve been affected by the disease may e-mail Farris at lyme@phc.edu.
(This article edited for content limitations)
Finally over the 4 week sinus infection!
I've heard that Lyme patients are especially sensitive to sinus infections and before getting Lyme - I'd never had allergies and any type of sinus issues before. Well, I got sick 4 weeks ago with what I thought was just a cold but it was the WORST cold I'd ever had in my life! My whole head was so congested, I couldn't stop my runny nose, I had pressure in my face, forehead and my ears were so clogged I couldn't hear as well.
I was tired ON TOP OF BEING TIRED from my usual Lyme exhaustion and was just RUN DOWN like never before. When my mucous started turning yellowish green (sorry for the visual!)
I finally went to my Primary who diagnosed a sinus infection and put me on two weeks of Bactrim DS. It's been a week on the new antibiotics and I'm feeling much better (at least with the sinuses!) I wonder why sinus infections are so common with Lyme patients!
Thursday, February 17, 2011
Ah...The Joys of Rifampin
So today I'm on Day 7 of Rifampin and Nystatin. I feel like hell and wonder how much longer I can go on like this. On the bright side, I'm trying to tell myself that all this misery will be worth it if I can get a handle on my Lyme and co-infections. My LLMD thinks that I also have Bartonella (tested positive for Lyme but wasn't tested for Bartonella) and this could be causing my continued fevers (still going on a year after I got sick) as well as my neuro cognitive issues. I've had severe joint, muscle and nerve (the TRIFECTA!) pain which have all significantly gotten WORSE since I started the Rifampin. I've had higher fevers, headaches, MAJOR insomnia etc. etc. I think I've really pissed off the stupid Lyme spirochetes and they are NOT happy. It truly is a battle: I'm trying to stay on these antibiotics for at least a month and it's only been 7 days. If I can get to 10 days - that will be an accomplishment.
Since I've never been a chronically sick person before, I've had to do some major adjustments in my life - physically and mentally. I think I'm finally coming to terms with the fact that I have to put my career on hold for a while, as much as that pains me.
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