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Who are the best CFS doctors in the United States?

Discussion in 'ME/CFS Doctors' started by Gingergrrl, Jun 15, 2014.

  1. Gingergrrl

    Gingergrrl Community Support Volunteer

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    I posted last week asking for referrals to CFS specialists in Los Angeles but after a severe worsening of my symptoms this week, I've decided to broaden my search.

    I was wondering from all of you guys on the PR forums, who do you feel are the absolute top, most knowledgeable CFS doctors in the entire United States? Even though I am not physically well enough to fly anywhere at present, I am trying to gather as much info as I can for the future.

    I am finding that some specialists are focused on only one theory or treatment and I am ideally looking for someone who is VERY current on CFS research/treatment yet open minded that there can be individual causes and individual treatments for different people.

    The worst of my symptoms revolve around the severe mononucleosis-type fatigue, severe PEM, orthostatic intolerance, low blood volume, tachycardia, chest pressure/feeling that I am not able to get enough oxygen when I breath, etc. I have found treatments for other symptoms such as digestive problems and insomnia that have been effective, but it has not raised my overall quality of life b/c of the core CFS symptoms itself.

    This weekend, I was practically bed-bound due to the severity of my symptoms and unable to participate in Fathers Day plans that we had made for both my father and my husband. It is extremely frustrating and I am following a very strict regime of diet, meds, and supplements from my ND and various doctors but not seeing any improvement. I know I may be searching for something that does not exist but am also not ready to give up yet.

    I would love to hear from you guys (because you are the REAL experts IMO b/c you are living with the disease) which doctors you recommend.

    Thank you in advance from the bottom of my heart.
     
    justy likes this.
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    @Gingergrrl43

    There are quite a few threads discussing "top docs." They would mostly be in this section but you could also try a google site search.

    Best wishes,
    Sushi
     
  3. Gingergrrl

    Gingergrrl Community Support Volunteer

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    Oops, sorry, I didn't realize! I will search this section and do a google site search tomorrow when I am more alert (hopefully LOL!)

    Can you remind me how to do the google site search? You told me once but I did not retain it, I am so sorry!
     
  4. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Just click on Search on the top right and the pop-up box's first line says:

    Or, you can launch it by clicking on the blue text I just quoted.

    Sushi
     
  5. ukxmrv

    ukxmrv Senior Member

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    Goodluck Gingergrrl

    With your search. It may be an idea to try and match yourself as well as possible with the experiences of the people who post about doctors and take some time to get to "know" the posters before making a decision. Some doctors are a better fit for some patients. The only way of doing that is to read the threads and then try to contact the individuals posters by sending them a personal message if you have any questions or to look at their earlier posts to see if they share the same type of symptoms as you do. Some posters hear have more information on their profile pages or blogs.

    Also bear in mind that many CFS doctors have very long waiting list and it may be months or a year or so before you can get to see some.

    Hope you find someone good close to you soon!
     
    Sushi likes this.
  6. justy

    justy Senior Member

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  7. minkeygirl

    minkeygirl Narcissism = lack of self awareness

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    Chia and Montoya are in California, Peterson is NV, Rey, Miami , Podelnik, CA Enlander, NY, Cheney, NC... I'm Sure there are a few more.

    If you are going to do it most people have waiting lists so get on one now.
     
  8. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    @Gingergrrl43

    Another good way to get an impression of these doctors and how they work is to look at Llewellyn King's video series ME-CFS Alert. He has interviewed most of them, and very thoughtfully. They are not all in one place here, though a search will find most of them.

    Or, You can go to YouTube and find most of them there. Here is one interviewing Dr. Chia (as a sample).

    Sushi
     
    ukxmrv likes this.

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