New era for ME/CFS research as top cytokine study attracts media headlines
The immune systems of patients who have recently developed ME/CFS look markedly different from those who have been ill for much longer, according to a major new study from Drs. Ian Lipkin and Mady Hornig at Columbia University. This shift in immune function hadn’t been seen before.
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Doctor near Stamford, CT?

Discussion in 'ME/CFS Doctors' started by asleep, Dec 30, 2009.

  1. asleep

    asleep Senior Member

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    Hello all! This is my first post, though I've been lurking for awhile.

    I was wondering if anyone had recommendations for a good CFS doc near Stamford, CT.

    I have not been diagnosed w/ anything, but my symptoms make me highly suspect CFS and/or Lyme. (I have included an overview of my history at the end of my post, including a visit to an LLMD).

    Basically, I am looking for a doctor who is knowledgeable and up-to-date on CFS (XMRV, etc), open-minded, and competent (knows what tests to run for both diagnostic and treatment purposes, and how to address any abnormalities).

    I know you're all going to say: "Simple, just go see your PCP" :p

    I've run into the names of two NYC docs: Dr. Enlander and Dr. Levine. Any thoughts on them?

    I'm also near the Fibro & Fatigue Center in Norwalk, CT. I don't know what to make of this place since my research seems to indicate that it is very expensive and yields, at best, modest improvements.

    And lastly, any thoughts on whether I should re-open my Lyme investigation?

    Thank you in advance!

    Asleep

    *************************
    History:

    Labs
    Positive EBV IgG, IgM in both 11/07 and 7/09
    Positive HHV6 IgG in 7/09
    Positive Mycoplasma Pneumonia IgG in 7/09
    Negative for CMV, Toxoplasma in 7/09
    Recent MRI negative for MS-like lesioning, but found incidental pineal cyst

    Lyme
    Saw a NY LLMD in 7/09. Concluded that Lyme tests were indeterminate, but that lyme was a clinical possibility. I did not pursue treatment at the time.
    Western Blots: Igenex had band 41 on IgG and IgM, Stony Brook had bands 41, 34, 58, 64, 66 for IgM and 28, 41, 58 for IgG.
    Barely reactive babesia duncani serology.
    Barely reactive ehrlichia chaffeensis IgM (in 11/07)

    Symptoms
    I have symptoms from every category on the aboutmecfs.org CFS symptoms page. My main symptoms are severe cognitive issues, fatigue, unrefreshing sleep, and feelings of pressure in my head and in the back of my neck.
     
  2. Jody

    Jody Senior Member

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    Canada
    Hi asleep,

    Welcome to the forums. :)

    I'm afraid I can't answer any of your questions for you. But I can tell you that you may find some answers here to some of your questions and support while you are looking. :)
     
  3. _Kim_

    _Kim_ Guest

    Hello asleep

    Welcome to the forums.

    I am a patient of Dr. Levine in NYC. My labs look much like yours and qualified me for a CFS diagnosis. I also have/had similar symptoms (others too) - but what struck me was your symptom of pressure in your head/back of the neck. Since I started on Valtrex, that symptom has been much much better. Dr. Levine said that's one of the EBV symptoms and that she finds her patients do get some relief with antivirals.

    I live in NJ, so the trip to NY isn't all that great. Drive to the bus to the train, take a cab... I wish she was closer. But I'm very happy with her being a partner with me in this journey. She is smart, fast, and accepts my input and decisions about treatment. For instance, when my micoplasma titers came back very high, I asked her if we should treat it. She said, "we could" and then we discussed pros/cons of that path. She's also reasonable as far as fees go and I have no problem getting an appointment quickly with her. The office is a little, um, basic. But she has facilities to draw blood and not having to make an extra trip to the lab each time I see her is a plus.

    Dr. Enlander is good, too. He has, from what I understand, more of a standard protocol that he follows for his treatment recommendations. He's got a good reputation, but for me, was not nearly as approachable as Dr. Levine. Both of these docs do research, which I appreciate. You probably can't go wrong with either one.

    Feel free to PM me if you have other questions that I haven't addressed.
     

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