Apr 122007

I have visited with the first of the Lyme doctors. Overall it went well, and I liked him (and he came off as extremely flexible with treatment). He could feel that I have an inflamed liver and spleen. He also listened to my heart and I have a Mitral Valve prolapse (apparently there is a click after a beat that can be heard). He also looked at my eyes and noted that they looked a little inflamed, and the optic nerve looked a little fuzzy at one of the edges. No surprise since I have been having a problem with my distance vision. He also noted that I am having a reaction when pulling up on my toes that my foot quivers, but I can’t remember what he called that neurological reaction.

His treatment is to start with a month of Ceftin, and then proceed with IV Rosephin(?) if I’m not better. After looking up Ceftin and Rosephin they are both Cephalosporins. I am sure they can be effective against the spirochete, but I have concerns that they would mostly throw more of the Lyme into a cell-wall-deficient (CWD), L-Form, bacteria state (more on CWD form later). This would then be much harder to treat, and there are concerns that the CWD form of Lyme causes the most disability. Unfortunately, I did the antibiotic research after getting home so I was unable to ask this in the office. The other concern is that he is not necessarily a Lyme specialist, though he does treat a lot of Lyme. In fact he was incorrectly diagnosed with Multiple Sclerosis at one point, but, like me, has Lyme. A positive was that he immediately recognized the Bartonella rash, and suspects that I probably have other co-infections that would have to be treated. A negative was that I was left with the impression that he treats to get you symptom free (which is not necessarily Lyme free), and will treat again if/when symptoms occur.

  5 Responses to “Dr. Visit #1”

  1. Sounds like a much better doctor than who you saw before! So, does this mean you are not taking Rebif any more? Or do you continue on both until a firm “No, it’s not MS” diagnosis can be given?

  2. I wouldn’t worry so much about whether he’s a “specialist” (after all, consider your last experience with a “specialist”) as whether he’s knowledgeable about Lyme and interested in treating it. Increasingly, Americans place credentials over competence.

    On the other hand, the doctor’s response to your concerns about treating the infection rather than just the symptoms should be a deciding factor.

    Did your neurologist indicate that a Lyme diagnosis would supercede the MS diagnosis? (My understanding is that MS lesions can often be distinguished from other types of lesions; I didn’t find anything to suggest that lesions caused by Lyme look the same.) If not, I don’t share your conviction that it’s unlikely that you could have both MS and Lyme. I have both MS and gout, although gout is extremely rare in women my age (as rare or more rare than MS, actually), and researchers are so convinced the diseases are mutually exclusive that they’re trying to develop a treatment based on the mechanisms that cause gout. If you do have both diseases, it would be important to eradicate the Lyme infection rather than just go for symptomatic control, since the presence of the Lyme infection, even if asymptomatic, would presumably be an aggravating factor for the MS.

  3. Kim,
    The doctor was astronomically better! and considering how bad #2 was (will post later) we will be going with him. Some difference in opinion over treatment is better than bad treatment.

    Yes, the Rebif is gone. Since it suppresses immune response to the brain and the Lyme is in the brain the Rebif had to go. Even IF I have MS the Lyme has to be treated first.

  4. GJ,
    I agree, and there is no such thing as a Lyme specialist. There are a very few who tend to see a lot of Lyme, and thus I call them the specialists. As I said with Kim, our differences of opinion in treatment, while important, are not super-critical.

    It is hard to definitively say that his viewpoint on treating symptoms was definitive, and even if it was that may not be invalid. There is no way to test to see if the Lyme is gone, and if you are perfectly fine than why continue to treat. I would agree with that and no more herx reactions. I don’t want to take antibiotics long term, so this may be where a lot of the “alternative” stuff comes in.

    As for the MS vs. Lyme lesions in theory the Lyme lesions look different, especially in location. In practice I don’t think you can diagnose one way or another from MRI scans. SPECT scans should be different, but still not diagnostic. Furthermore, so little is known about Lyme that I doubt, if possible, hardly anyone has the expertise to definitively decide based on either brain scan. Both Multiple Sclerois and Lyme often has to be a clinical diagnosis rather than one based on definitive test results.

  5. Up for a trip to DC?

    I just remembered reading about this Lyme/MS study in MS Quarterly Update–in fact, I think I considered volunteering, until the description got to “lumbar puncture”: http://clinicaltrials.gov/ct/show/NCT00001539?order=1

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