Feb 042010

While the IDSA never had a significant impact over my treatment of Lyme I know their protocols do negatively impact a lot a people with Lyme. Many were optimistic that the legal battle with the IDSA would change things; I have never been that optimistic. (You can read about IDSA’s recent antics here.) You almost have to applaud their voting technique as almost malicious genius. In the minimum the amount of effort IDSA is willing to exert to maintain the status quo is excessive. Reviewing the new information and following the protocol has to be easier. With this development I am even less inclined to think any progress will be made with the IDSA Lyme protocol in the near term.

Reviewing an old post it reminded me of all the talk revolving around crazy at the IDSA hearing. There must be a little irony now that the IDSA seems to be forcefully rejecting new information for review.

  3 Responses to “Optimism Fail”

  1. I was diagnosed with MS after about 17 years worth of observation, MRI, evoked potential tests, neuropsych testing, spinal tap and testing, EMG and the physical exam with the same doctor/neurologist for seventeen years. That neuro was highly regarded in the MS community. He retired a couple of years ago. I have been undiagnosed by one doctor and I have been diagnosed as possible MS by another doctor. The Copaxone treatment that were working have been withdrawn and my health is getting worse. I am told that I should be seen in an MS clinic. It is enough to make a person mad.

    I am giving up on any medical treatment for MS because they all seem incompetent though they all work at pretegious hospitals.

    Any advice for a very tired person who regards herself as having MS but has no treatment for it? This illness has been disabling with unpredictable attacks from 1-3 times a year, (only 1 attack with Copaxone), for almost 26 years.

    Thanks. I hope you are feeling well for at least today.

  2. 17 years is a very long time for observation and testing. Why the wait? I received my MS diagnosis within a couple of months. I certainly want you well, but Copaxone, as with the other MS drugs, are immune suppressants and expensive. Not something you want to be on unless absolutely necessary.

    Usually I have found neuro’s more than happy to diagnose MS and write a prescription. Why are they consistently hesitant in your case?

    Additionally, my experience with the Med School was that it was hard to get into and then they were so over crowded it was hard to get an appointment. Not the best environment unless necessary.

  3. Eric,
    Glad to see that you are getting better with Lyme treatment. Or bartonella treatment? Coincidentally, I saw that MS rash on my cousin who was diagnosed with MS but which I believe is bartonella and was wondering what antibiotic/drug (s) do you feel has helped you the most thus far? Thanks in advance, great blog and wish you continued improvement and good health.


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