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U.S. docotors that you reccomend besides Dr.Klimas and Dr. Rey?

Discussion in 'ME/CFS Doctors' started by UWFgirl, Apr 3, 2013.

  1. CallieAndToby

    CallieAndToby Senior Member

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    florida
    That may be a blessing in disguise. My friend and I had horrible HORRIBLE experiences with the doctors in Miami.

    Have heard rather bad things about peterson from friends who live in tahoe. If you look up his reviews on ratemds - not good.

    Dr. Lapp couldn't help me but seems nice.

    One friend had good experience with Dr. Chia another had bad experience. She was put on antiviral, didn't help.

    I am not ever going to see another "cfs" specialist again. What can they do?? I'm looking into other things, that involve neurologists with knowledge of autoimmunity, specifically neuro-immunology. Not sure how that will go. But the only thing I haven't tried is auto-immune treatment and I've been diagnosed with PANDAS and autoimmune dysautonomia. Lupus has never been ruled out for me......... Auto-immune encephalitis is another thing we are discussing (my psychiatrist and I).

    As far as infections go, I'm getting them left and right. I have no voice, so was put on abx, got: UTI, yeast infection, and c-diff (which I currently still have). LDN, immunovir, and equilibrant gave me severe violent reactions and I tried to stick with equil. didn't help. Was put on valtrex for coxsackie, 3 months and I ended up in ER basically got every side effect you can find on google, didn't help titers.............. I wonder what else can they do besides the immunomodulators, very sketchy abx, and antivirals? And when that fails, what then?

    I actually heard the CFS doctor in Belgium is the best at ruling out everything else to make sure you actually have CFS. Everyone in the U.S. just assumes you have it when you show up. Ah googled:
    Kenny De Meirleir. There is also a doctor in Canada that thinks most CFS patients are misdiagnosed and I can't remember his name either but he runs every test known to man to try and find the actual problem, though sometimes he concludes it is M.E.
     
  2. SanDiego#1

    SanDiego#1 SanDiego#1

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    SouthEast USA

    I AGREE WITH YOU- I REFUSE TO GO TO ANOTHER CFIDS DR. AGAIN.
    I JUST HEARD FROM ANOTHER CFIDS DR. THAT DR. MEIRLEIR IS RETIRING???????
    IS THIS TRUE???

    san diego #1

    San Diego #1
     
    CallieAndToby likes this.
  3. Daffodil

    Daffodil Senior Member

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    he is not retiring. he will also be practicing in reno soon
     
  4. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    SanDiego#1

    He is just retiring from his university teaching post, not his practice.

    Sushi
     
  5. concepcion

    concepcion

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    Dr. Byron Hyde in Canada - http://www.nightingale.ca/index.php?target=aboutdrhyde
     
  6. BellaSC

    BellaSC

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    Has anyone gone to see Dr Byron Hyde in Canada?
    Do you have to pay cash?
    I would imagine that US insurance would not cover his services....
    Maybe I'm in denial after 6+ years of me/cfs, but I've always had a gut instinct that I have something else going on.
     
  7. acer2000

    acer2000 Senior Member

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    I have seen Dr. Peterson. His practice makes the most sense if you live in Nevada or plan on traveling there frequently to see him for follow up. His office is small and its hard to get through to them if you have to do a lot of stuff over the phone for follow up. Its very frustrating at times.

    To be honest, the main advantage of seeing him is if you want to try Ampligen since he is a site for their open label "study". He also participates in other research. He does a significant initial workup to rule out other potential causes of illness. In my case, he didn't find much and his other treatments (not Ampligen) didn't help. But everyone is different.
     
    Last edited: Dec 28, 2014
    NK17 likes this.
  8. Gingergrrl

    Gingergrrl Community Support Volunteer

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    USA
    Not sure if this has already been mentioned in this thread but Open Medicine Institute in Mountain View, CA is taking new patients. They have two doctors, Dr. Kogelnick and Dr. Kaufman who are both excellent. They do not take insurance for the actual appt, but blood tests or other procedures and medications are covered by insurance. They are both a clinical and research facility and as a patient you are treated with great respect and care.
     
    NK17 likes this.
  9. Daffodil

    Daffodil Senior Member

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    dr. leo galland in NYC. VERY thorough testing....expensive
     

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