Chronic Lyme Disease
09/05/08 16:49 Filed in: chronic lyme disease
Chronic Lyme disease is controversial. It is what appears to affect those of us who still suffer from Lyme symptoms after finishing a standard IDSA recommended dosage of antibiotics. In some cases, chronic Lyme manifests in Lyme patients who received antibiotics for treatment, but weren't given a strong enough dose for a long enough time.
Some Lyme symptoms seem almost livable. Tinnitus, for example. Talking from personal experience only, I can live with it. This is not to say that I like it. On the contrary. I'm a classically trained musician, peculiarly sensitive to noise. You know those people who wince at the out-of-tune piano at the community concert? That would be me. I'm not exactly proud of that, just sayin'. So, losing my hearing partially to tinnitus has really sliced into my enjoyment of natural sounds. The tinnitus might go away some day. For now, it sure seems chronic. There are metallic crickets playing at varying volumes inside my head, 24/7.
Other chronic Lyme symptoms are far more serious. For example, medical evidence suggests that rheumatoid arthritis is one result of untreated, or undertreated Lyme disease. As many as 60% of people with untreated Lyme may develop chronic arthritis.
Central nervous problems, such as facial paralysis and meningitis are said to occur in 10 to 20% of people who are undertreated or never treated for Lyme.
Heart symptoms occur in a small percentage of Lyme patients. A jumpy, pounding irregular heart can vary the gamut from being not at all bothersome, to very scary. The jumpiness can occur either because of an infection in the heart, or an electrical conduction that requires the patient have a pacemaker implanted.
Chronic Lyme is controversial because doctors don't all agree that these long-term symptoms of Lyme are indeed still considered Lyme. Whatever you call them, they need to be tended to.
Some Lyme symptoms seem almost livable. Tinnitus, for example. Talking from personal experience only, I can live with it. This is not to say that I like it. On the contrary. I'm a classically trained musician, peculiarly sensitive to noise. You know those people who wince at the out-of-tune piano at the community concert? That would be me. I'm not exactly proud of that, just sayin'. So, losing my hearing partially to tinnitus has really sliced into my enjoyment of natural sounds. The tinnitus might go away some day. For now, it sure seems chronic. There are metallic crickets playing at varying volumes inside my head, 24/7.
Other chronic Lyme symptoms are far more serious. For example, medical evidence suggests that rheumatoid arthritis is one result of untreated, or undertreated Lyme disease. As many as 60% of people with untreated Lyme may develop chronic arthritis.
Central nervous problems, such as facial paralysis and meningitis are said to occur in 10 to 20% of people who are undertreated or never treated for Lyme.
Heart symptoms occur in a small percentage of Lyme patients. A jumpy, pounding irregular heart can vary the gamut from being not at all bothersome, to very scary. The jumpiness can occur either because of an infection in the heart, or an electrical conduction that requires the patient have a pacemaker implanted.
Chronic Lyme is controversial because doctors don't all agree that these long-term symptoms of Lyme are indeed still considered Lyme. Whatever you call them, they need to be tended to.
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How to find a Lyme doctor
08/20/08 17:07 Filed in: lyme Disease Doctor
Currently, there are two standards of treatment for Lyme disease. If you have Lyme symptoms, or suspect you may have Lyme, please contact a Lyme literate medical doctor, or LLMD. Go to the Lyme Disease Association doctor referrals page.
You'll need to register using your email address, and follow the simple directions to find a doctor near you. It doesn't take long and it's easy to do. If you need a Lyme specialist, we urge you to find one soon.
Infectious disease doctors (IDSA) may not have knowledge of Lyme disease, and may lack the experience that ILADS specialists can offer in diagnosing and treating Lyme. ILADS member Ginger Savely, RN, has treated over a thousand patients suffering with Lyme symptoms. She says "you can get better!"
If Lyme is left untreated it can be debilitating. The good news is you can get better. Find a doctor who knows how to diagnose and treat Lyme now.
You'll need to register using your email address, and follow the simple directions to find a doctor near you. It doesn't take long and it's easy to do. If you need a Lyme specialist, we urge you to find one soon.
Infectious disease doctors (IDSA) may not have knowledge of Lyme disease, and may lack the experience that ILADS specialists can offer in diagnosing and treating Lyme. ILADS member Ginger Savely, RN, has treated over a thousand patients suffering with Lyme symptoms. She says "you can get better!"
If Lyme is left untreated it can be debilitating. The good news is you can get better. Find a doctor who knows how to diagnose and treat Lyme now.
ABC covers Lyme debate - part 2
08/04/08 16:33 Filed in: Lyme Disease in the news
LDRD vlog
Watch the video
* Lyme disease tests are often misleading
* Lyme symptoms can mimic hundreds of other conditions
* Many Lyme patients do not receive a correct diagnosis until the Lyme bacteria has had a chance to replicate throughout their body
Does your doctor know how to test for Lyme? Is he or she Lyme aware? ILADS physician Dr. Raphael Stricker told us in an exclusive LDRD interview that the conventional Lyme tests have a "coin-toss sensitivity," meaning that you could get the same results if you just flip a coin.
Do you have to go outside IDSA recommendations to get the answers you need? The woman in this news story considers herself virtually cured of Lyme, after two and a half years of antibiotics therapy.
Are some conventional doctors beginning to understand that these tests, developed over 30 years ago, are outdated and inadequate?
Watch this brief news story on the great Lyme debate. Journalist Kathy Fowler continues the 3-part investigation. Leave your comments here and also send drop her a note at lyme@wjla.com Please share this link with others you know are concerned about Lyme disease symptoms.
Watch the video
* Lyme disease tests are often misleading
* Lyme symptoms can mimic hundreds of other conditions
* Many Lyme patients do not receive a correct diagnosis until the Lyme bacteria has had a chance to replicate throughout their body
Does your doctor know how to test for Lyme? Is he or she Lyme aware? ILADS physician Dr. Raphael Stricker told us in an exclusive LDRD interview that the conventional Lyme tests have a "coin-toss sensitivity," meaning that you could get the same results if you just flip a coin.
Do you have to go outside IDSA recommendations to get the answers you need? The woman in this news story considers herself virtually cured of Lyme, after two and a half years of antibiotics therapy.
Are some conventional doctors beginning to understand that these tests, developed over 30 years ago, are outdated and inadequate?
Watch this brief news story on the great Lyme debate. Journalist Kathy Fowler continues the 3-part investigation. Leave your comments here and also send drop her a note at lyme@wjla.com Please share this link with others you know are concerned about Lyme disease symptoms.
ABC covers the Lyme Debate
08/02/08 11:51 Filed in: Lyme Disease in the news
* Is Lyme disease an unrecognized epidemic?
* If left untreated, will it become chronic?
* Can Lyme be treated with long-term antibiotics?
Or do you believe, as IDSA docs do, that the Lyme epidemic is nonexistent? Is chronic Lyme disease all in the patients' head? Are long-term antibiotics dangerous?
These questions simmer at the heart of the great Lyme debate, which is played out every day in decisions made by IDSA doctors on one hand, and ILADS physicians on the other. The IDSA is currently reviewing its treatment guidelines.
Who's correct? Where do you stand? Anyone who has ever been doubted by their Infectious Disease doctor, and all of us whose lives are affected by Lyme will want to watch this three part story.
ABC News covers the Lyme controversy. Take a look. If you appreciate this report, please take a moment to call or email ABC and let them know. Our opinions as viewers matter to them.
Lyme story airs!
07/04/08 13:30 Filed in: Lyme Disease in the news
According to Brooke Landau, Lyme activist and TV news reporter, television stations listen and respond when they are deluged with requests from viewers to air stories about a specific topic. Viewers are their bread and butter. Please take the time to comment on the ABC website to let them know you appreciate the story they aired this morning about the documentary film, Under Our Skin. Here's my comment to them:
Thank you, thank you for bringing this growing epidemic to light. However, as many have already noted, the majority of people suffering with Lyme disease never saw a tick bite, and never had the bull's eye rash. In addition, the tests for Lyme have what one physician refers to as "coin toss sensitivity," meaning that if you toss a coin, you get results that are just about as accurate as using the ELISA or the Western Blot for testing positive. According to ILADs physicians I have interviewed for the Lyme Disease Research Database, the CDC has a long history of ignoring scientific evidence for the existence of chronic Lyme disease. Thanks to CT Attorney General Richard Blumenthal, the IDSA is now being forced to review its Lyme disease treatment guidelines. People who are suffering with Lyme due to misdiagnosis, under-diagnosis, and simple ignorance have long been forced to become their own health advocates, often at a time in their lives when they are extremely sick. I applaud you for airing this segment on the Lyme controversy, yet I am disappointed to see that your reporters did not bother to investigate the accuracy of the numbers of new cases of Lyme reported each year. As someone else commented, that 20,000 quote is hideously underestimated. Next time, I hope you have the courage to quote numbers that are closer to the actual truth.
In the Lyme documentary Under Our Skin, filmmaker Andy Abrahams Wilson (Open Eye Pictures) exposes the cruel dismissal that the medical establishment frequently gives people who are sick and suffering with Lyme. The film opened in April at the Tribeca Film Festival in NYC. Andy is featured in the LDRD's interview series.
Thank you, thank you for bringing this growing epidemic to light. However, as many have already noted, the majority of people suffering with Lyme disease never saw a tick bite, and never had the bull's eye rash. In addition, the tests for Lyme have what one physician refers to as "coin toss sensitivity," meaning that if you toss a coin, you get results that are just about as accurate as using the ELISA or the Western Blot for testing positive. According to ILADs physicians I have interviewed for the Lyme Disease Research Database, the CDC has a long history of ignoring scientific evidence for the existence of chronic Lyme disease. Thanks to CT Attorney General Richard Blumenthal, the IDSA is now being forced to review its Lyme disease treatment guidelines. People who are suffering with Lyme due to misdiagnosis, under-diagnosis, and simple ignorance have long been forced to become their own health advocates, often at a time in their lives when they are extremely sick. I applaud you for airing this segment on the Lyme controversy, yet I am disappointed to see that your reporters did not bother to investigate the accuracy of the numbers of new cases of Lyme reported each year. As someone else commented, that 20,000 quote is hideously underestimated. Next time, I hope you have the courage to quote numbers that are closer to the actual truth.
In the Lyme documentary Under Our Skin, filmmaker Andy Abrahams Wilson (Open Eye Pictures) exposes the cruel dismissal that the medical establishment frequently gives people who are sick and suffering with Lyme. The film opened in April at the Tribeca Film Festival in NYC. Andy is featured in the LDRD's interview series.