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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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ME/CFS specialist in Boston area?

Discussion in 'ME/CFS Doctors' started by sensing progress, Jul 12, 2010.

  1. sensing progress

    sensing progress Senior Member

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    Tucson, AZ
    Anyone know of someone good?
  2. firefly

    firefly

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    Here's a few options:
    Dr. Roy Freeman (neurology) at Beth Israel Deaconess for a full work up of the autonomic system (POTS, dysautonomia etc.)
    Northampton Wellness Associates (Dr. Lynch, Dr. Elson) for a more alternative approach. (Allergies, Vit. infusions, hormone profiles etc.)
    The Marino Center for a similar, integrative approach in Boston itself. (especially, Dr. Gordin, who I have not seen, but have heard great things about)
    Dr. Felsenstein, infectious diseases at MGH (but we don't seem to know much about her yet -- looking forward to appointment reports from folks who see her later this month).
  3. dsdmom

    dsdmom Senior Member

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    My two cents:
    Avoid Roy Freeman or ANYBODY in the autonomic department @ beth israel. My experience with them taught me they know NOTHING about CFS even if they say they might. I was told that I just needed to exercise hard and I would be well. Oh and that I didn't have dysautonomia. This, of course, even though I already had a ton of autonomic tests proving that I most certainly did! If you need autonomic testing and your dr sends you there just for that, that might be fine, but I would not rely on them to help you in any way. Peter Novak @ UMASS Worcester does autonomic testing too but again is not versed on CFS at all.

    Marino center is an option - as is Visions Medical in Wellesly. Dr. Bingham & Dr. Levitan used to be @ Marino and went out on their own. I see Dr. bingham and he helps with more integrative stuff.

    I have an amazing pcp but she is a concierge dr (meaning I pay a fee to see her). If you are interested, pm me and I'll send you her name.

    Other than that the best thing I have done is go see Nancy Klimas in Miami - and now my pcp is working with her so that makes life much easier. Honestly though it is more than worth the trip down to Miami if you can swing it and see her in her private clinic (very little wait time).

    Are you in Boston or Arizona?
  4. JT1024

    JT1024 Senior Member

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    Massachusetts
    Hi...

    Glad to see this come up again. I have not been to doctors in awhile since I don't have much faith in their knowledge.

    I did see Dr. Alex Bingham and he did do some testing but he seemed to want to focus on allergies and gut dysbiosis when that has not been my main issues.

    I have my results and need to make an appointment with him again. I have been compiling information and thoughts regarding tests etc. I am still working full time so it is difficult for me to get to appointments. Wellesley (where Dr. Bingham is) is a nasty ride for me - especially during rush hour traffic.

    dsdmom, I am interested in a concierge doctor so if you are willing to PM me, I would love to learn more about him/her. I am also interested in Dr. Klimas.

    Sure wish we could clone her and Dr. Peterson!

    Thanks ~ JT
  5. firefly

    firefly

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    I'll second the advice to head to see Dr. Klimas. Unfortunately, no one in Boston comes close at this point.
    Also, dsdmom, agreed on Dr. Freeman. He is not able to help with CFS more broadly. Depending on where you are in the diagnostic process, he can play a role. He was important for me in that it was the first black on white diagnosis I got, and he was able to give me a good picture of what was going on with my autonomic system (pots, peripheral deenervation).
    But if you have to chose because of costs, insurace etc., he probably would not be my first stop. Also, he tends to reccomend Florinef, which is an immunosuppressant, so probably a really bad idea if there are viral factors at play. I know I felt terribly on it and better once I got off it.
  6. sensing progress

    sensing progress Senior Member

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    Tucson, AZ
    Arizona. But I have family in Boston whom I could stay with. We just figured that the Boston area has one of the highest concentrations of doctors and hospitals in the country, so thought there would be someone there who was good with CFS. I have actually been inclined to go see Dr. Klimas or Dr. Lapp but wanted to investigate Boston first since being able to stay with family there would cut down on trip expenses (not to mention stress).
  7. JT1024

    JT1024 Senior Member

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    Hi sensing....

    From all that I've experienced and from what others have told me, Boston is NOT the place for an ME/CFS patient. Despite the high concentration of doctors, this area is far behind in ME/CFS care. Klimas and Peterson seem to be the top picks these days. I'm going to have to refresh my memory on Lapp. I know he's associated with a clinic in North Carolina. I don't think he's at the top of ME/CFS treatments but I could be wrong!

    If it were me, at this point, I would go to Klimas or Peterson. Klimas has the edge having had experience with retroviral meds. Peterson has the WPI connection.

    Good luck with whoever you choose to see!

    ~ JT
  8. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Concord, NH
    I would suggest Dr. Glenn Rothfeld at the Rothfeld center.

    FYI

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