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Re: Defending Shoemaker with caveat
Posted by Katie on 5/21/08

    Tracy,
    I think I would listen to the doctor who will TREAT chronic Lyme. My mom had chronic Lyme and is
    fine after 2 years of antibiotics. The post lyme syndrome is an excuse not to treat long term.
    post lyme syndrome a way out for doctors not to deal with the illness much the way a CFS
    diagnosis is given.
    I don't believe in Post Lyme Syndrome as my Mother's doctor told her "saying post lyme syndrome
    is no more true than post alzheimers. Either you got an active Lyme infection or you don't.
    My mother was a patient of Dr. Burrascano.
    I would only keep a doctor who will make you comfortable. You need to not only get first class
    care but have a trust and respectful relationship with the doctor too.

    I understand about that packet. I called his office for one out just in case my mother didn't
    get well. We were both surprised at the level of immaturity written by a doctor in his patient
    package. I am in high school and even I know better than to send this trash to patients if you
    expoect to run a good business. I could not believe the complaints about the millionaire who
    didn't pay, the housewife and all these examples of him being not paid by patients. If he is
    that paranoid about not getting payment from his patients he could tell patients to prepay with
    a check two weeks in advance or a credit card.
    What a strange guy!


    On 12/23/07, Tracy wrote:
    > 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&37; 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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