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Re: Defending Shoemaker with caveat
Posted by Tracy on 12/23/07

    Hi! When I posted last year (see above), I had only read about the doctor and read some of his
    work. Sorry, seems that I might've misled a few readers). I wrote about my philosophy and
    about risk taking and in general, doctors going against the grain, theory driven treatment,
    etc. I was (and still am) impressed with the writing and the work that RS does (with a caveat
    regarding attitude). It is a warning, as there is so much political angst tied up in research
    on chronic illness, and it is coming out in many ways (we see it in our own discussion here).

    I recently went to him, and am starting the protocol. Not sure how though (more below). I
    totally understand folks responding to doctor and staff's odd or negative attitudes. I felt
    comfortable during the visit, but after that had two phone sessions where I perceived a lot of
    hostility on his end. In between, he sent me this fax that was incredibly insensitive. I
    believe that it was in response to my telling him that I had a standing appointment to see a
    (specific) Lyme doctor. During the second phone call he questioned why I was seeing him (Lyme
    specialist). Reading in between the lines, two months later, I realize they simply dislike
    each other. That might be putting it mildly. I was/am caught in the middle. I didn't know it
    then though. It was so difficult and upsetting to read his fax, which was accompanied by a
    test result (C4a) that was so out of whack. The fax reads "You are making very poor decisions
    in regards to the evaluation of your health. You should've gotten an MR Spectroscopy. You need
    to look more closely at the mechanism of your illness". And that was it. He and I had never
    talked about an MR Spectroscopy. Someone from his office had called me while I was on my way
    to see if I wanted it, and I said that I didn't know, that she should try to schedule it for
    me. She ended up saying I'd have to stay in MD for another few days, which I couldn't do. So
    I figured he and I would talk about it, but it never came up.

    After getting the fax, I called over to one of his staff, and was informed that she couldn't
    tell me specifically what the message was referring to. She said he wanted to 'prepare me for
    the next phone consult'. I spent all my waking hours trying to figure out what C4a
    specifically meant, and was so confused. Lyme or no Lyme??? It was a very difficult thing to
    go through. I'm still not 100% sure why according to him I am not making good decisions in
    regards to my health (I have stopped at NOTHING to gain new information, to take a thorough
    approach, to honestly look at all results, take into account all doctos, all research, etc. I
    have kept all my records, etc. Been like the model patient). So to read that, I was VERY
    surprised. And I took it personally. As I did the attacks on Shoemaker and his research, from
    this Lyme doctor after I went. I have to say that I feel very isolated due to BOTH of these
    doctors' lack of sensitivity. It has left me unsure of which protocol to follow. I cannot
    seem to fit them both in, I would have to modify one. One seems to believe in Chronic Lyme,
    the other in Post Lyme Syndrome.

    So I find myself caught up in this mix, and am trying to separate personality, defensiveness,
    etc. from science. But I am not a doctor. I am a Licensed Psychotherapist and I cannot figure
    this out. If you read the introduction section of the packet Dr. Shoe sends, it sounds like
    words from a war veteran- you can tell he has been burned before and has scars to prove it.

    I'm not sure what I'm getting at here, just that I want to recognize folks' experience of the
    backlash of this- the result of possibly burned out staff, the doctor so used to defending
    himself that it is projected onto patients, etc. I am not excusing it, but perhaps validating
    some people's experience here. And I guess I'm also wanting to ask if anyone here has tried a
    modified protocol (CSM 2x/day as opposed to 4, along with antibiotics at the same time).

    Both doctors seem very concerned about the status of my health (Dr.Shoemaker said I should be
    existing in a bubble, the other doc said if I continue to go without aggressive Lyme treatment,
    I will have a worse spect scan / brain damage). I honestly don't want to ever talk to either
    one again. What a position to be in.

    There's one more thing I want to add, an ODD thing, and that surrounds the Mycometrics. Has
    anyone done this (ERMI) testing?
    Thanks in advance to your response-
    Tracy


     
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