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Re: Shoemaker, better than CFS experts at Georgetown Uni
Posted by me2 on 4/06/08

    I am in agreement with you. BTDT.

    It's all about the grant money and getting published .
    Dr. Shoemaker is not like Dr. Baranuik, Shoemarker is far more advanced in thinking outside the
    box.
    Now I am getting well. Almost there!


    On 12/27/07, Melody wrote:
    > Dear Tracy,
    > I read Dr. Shoemaker's book, "Desperation Medicine", it really was good.
    > I would like to see him but from what I am reading it does sound like he can be an as-h--e
    > sometimes, but he has got to be better than what I got at Georgetown University, from the
    > experts in CFS there.I understand what Dr. Shoemaker means by doctors working for institutions
    > and get Pharmacy company grants. They diagnose based on medical politics instead of finding out
    > what is making us sick. I was diagnosed with CFS and was given Cymbalta and Feleril and told
    > that was it.I have been taking this but I keep feeling more ill with each day that goes by. I
    > know my hormones are not working well, I feel like I have the flu and stiff joints and think
    > maybe I have Lyme's disease, I live out in Loudon County. At Georgetown Immunology they don't
    > check for much and since my hormones where in normal limits but on the low end of normal limits
    > the doctor won't do anything. I know my hormones are bugged out because my skin and hair are dry
    > and I can only sleep at certain high points in my menstrual cycle. I need a doctor to get to the
    > cause of my illness and sooner rather than later if it can be done. Does anyone know if Dr.
    > Shoemaker diagnoses hypothyroidism if you are on the low end of the lab range?My last TSH test
    > was 4.1, but this is considered normal at Georgetown.
    > Does anyone know if Dr. Shoemaker treats low progesterone or estrogen with bio-identical
    > hormones?I don't remember reading anything about sex hormones in his book but my mind is foggy
    > too. If Dr. Shoemaker doesn't loose his temper and will be nice, I would consider going to him.
    > I need a good doctor. I will not sit still and have CFS stamped on my forehead without
    > explanation.In his book and on his website you can see all the tests Dr. Shoemaker orders. I had
    > less than half these tests at Georgetown. I may be sick but not brain dead, I know when doctors
    > are trying to solve problems instead of just making a name for themselves to get published or
    > another grant.
    > Melody
    > Melody
    > 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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