Wednesday, September 20, 2006

Lyme Disease Controversy (The Lyme Wars) In A Nutshell

This summer was a Lyme disease and tick-borne illness summer for our family. My older son got Lyme disease for the second time (a new infection); he had it in June 2001 also. My younger son contracted Lyme and Ehrlichiosis (fatal in 7-10% of cases, and is another tick-borne illness). I also contracted Lyme Disease. Actually my husband had some symptoms also but he feels he was later asymptomatic so to date, he refuses to seek treatment.

So it was that this summer while learning about Lyme Disease treatment options, I learned of the Lyme Wars, which I previously did not know existed. I was dying to write about it to share it with my blog readers. I have not done so yet for a few reasons:

1. The topic is huge.

2. It would take me time to write it that I don’t necessarily want to spend on it.

3. Most importantly, the topic is so upsetting to me that for my own well being it is best for me NOT to dwell on this controversial subject. I have tried instead, to focus on the three of us getting healthy. I worry in part that overly focusing on the very upsetting Lyme Wars will impede my own recovery from Lyme Disease.

On September 17, 2006 a very long article written by Gary Santaniello was published in the newspaper The Hartford Courant. I would love for you to read it, here.

Please even if you live in a different state than Connecticut and even if you live outside of America, read this article. The Disease is all over the country. I don’t know what is worse, living in Connecticut where every doctor thinks they know how to treat it, even when they don’t, or living in another area where the infected patients are being evaluated by doctors who are completely ignorant about it and may assume that just based on geographic location of the person’s home residence, that an infection with Lyme Disease is impossible. My heart goes out to all Lyme suffering patients, no matter where they live.

I have not yet finished reading the article. I am still so upset about this issue that twice I picked it up to read it and had to put it down, unread. Three other times I read parts of it but had to stop and put it down for another day due to rising stress levels that it caused!

This article is so detailed that there is no need for me to reinvent the wheel to blog about this topic. So please, do go and read it.

I will say that some very important things whiz by in the article. Read it carefully and slowly, and perhaps if you really want to understand the issues, read it a second time. I advise that you print it off and tuck it away for future reference (who knows how long the article will be available online).

One example is that there is one short sentence about not having a test that can detect if there is a current Lyme infection in the body. That one sentence could be expanded into a long article or to a chapter in a book or perhaps even a whole book in and of itself, which would explain what the tests they do have now test for, why testing for a current infection is difficult, why and how the Lyme bacteria (Bb) is hard to test for, why there are conflicts of interest with some physicians and some of the Federal Government officials who set policy, etc.

Another thing that I am not sure if the article mentions is the issue of incorrect statistics. One would assume that every case of Lyme Disease is reported to the CDC for data analysis and statistics compilation. Note that the statistics of the incidence of Lyme are quoted all the time as the truth about the seriousness of the issue. However, that is not true; many ‘positive’ test results cannot be reported to the CDC. The CDC has set parameters for which types of test result are considered positive in their eyes and they only accept reporting of Lyme Disease that meets their narrow definitions. Additionally the very high false-negative rate of the ELISA test (the one the CDC states should be done first) are not allowed to be reported, even if they show a positive result. I know this may be confusing for you if you don’t know about this topic already. With the way the CDC restricts reporting criteria, the fact that my two sons and I had Lyme this summer was NOT reported to the government, so there is one example of the statistics not being accurate in my opinion.

The CDC recommends that doctors treat the patient based on symptoms, not just on the test result alone. Yet some doctors continue to refuse to treat the condition if the test is negative. This is a huge topic and I could go on and on about it, but I won’t.

Here in Connecticut things seem to be getting much worse. I know many people in my normal life (not through Lyme circles) who have Lyme Disease. Everyone has either had it, has a close family member who has it or had it or else a close friend or relative has it.

Our nation’s obsession with test results, in my opinion, has impeded the diagnosis and treatment of this condition. The fact that the current testing methods have a high false negative rate is problematic. The fact that if a person has had Lyme in the past that new tests done after subsequent tick bites could be considered false-positive and the fact that there is no test to check for an active infection is a huge problem.

I don’t even know what to think about the notion of doctors getting in trouble for practicing medicine that some others think is not right. I am torn on the issue.

Another huge issue is the conflict of interest ethical issue that is a problem for researchers, physicians who sit on councils of medical societies and the Federal Government committee physicians (CDC, NIH, etc.) who set policy for what test should be done, what medications should be recommended for treatment, etc.

Please inform yourself about this important topic. This Hartford Courant article is a great place to start.

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LifeHappens said...

Hi, like your blog. Did you get treated for lyme and if so what route did you take. Goimg through it now and this lyme war debate is driving me nuts. Thanks in advance for your input!!

ChristineMM said...

Hi Life Happens,
I was only able to get 21 days of doxycycline 100 mgs to take 2x a day.

Some doctors prescribe 28 days and some feel 6 weeks is best. I had a hard time finding anyone to prescribe beyond 21 days and that was Lyme-filled Connecticut.

After I wrote this a documentary came out called Under Our Skin. There is an official website and there are trailers on YouTube.

I saw the movie and it describes the situation well, the controversies and such.