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Best Doctors in US for CFS/ME?

Discussion in 'General Treatment' started by chilove, Nov 29, 2013.

  1. chilove

    chilove Senior Member

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    It just occurred to me that I have really good insurance and a job that I can work from anywhere so I could move to wherever a really good doctor is. I'm tired of trying to figure this all out on my own here in Austin, TX.

    Thanks!
  2. minkeygirl

    minkeygirl Senior Member

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    Why not find a doc and then just travel once a month or a lot of docs will Skype. That way if it doesn't work out, you aren't stuck somewhere and be in the same boat you are in now.
    Valentijn, heapsreal and lnester7 like this.
  3. lnester7

    lnester7 Seven

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    The hardest questions is that is currently taking patients. You might have to do a list and work your way down, just get in line with everybody. I got in line and I was lucky to get in with Dr Rey at klimas on time, I have been in treatment for 2 years and still on call for all the others (I am still in line with most).

    Another thing is I didn't know what was my issue, mold, Lyme or whatever so I Wanted to get into one of the most generic ones that would test for me everything : Like Klimas, Peterson.... (instead of a neuro CFS or stomach like Shia.).

    Good point you might want to see how it goes first and maybe do some travel before doing a permanent commitment, you might have to try a few before you settle.
  4. minkeygirl

    minkeygirl Senior Member

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    Very true. Some docs have a very long waiting list. And depending on what your main issues are would determine who you go see.
  5. chilove

    chilove Senior Member

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    Oh wow, I didnt know Skype was an option. That's awesome. Ok, who should I try to get an appointment with?
  6. minkeygirl

    minkeygirl Senior Member

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    Like @Inester7 said, do you want someone who does everything across the board or do you know you want someone who does viruses? Here is one place to start (see the link below).

    Most doctors, I'm sure, will want to see you for the first appointment. Then after that they MAY do Skype but you have to ask them when you call to see if they can see you and when. I think Lapp would want to see his patients once a year but would do phone consults in between.

    You need to do some research then figure out who you want to see then go from there.

    http://forums.phoenixrising.me/index.php?forums/me-cfs-doctors.32/
  7. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I think that in order to prescribe, a US doctor has to see you once a year. KDM will also followup by phone (maybe skype?) between face-to-face appointments.

    Sushi
    Valentijn likes this.
  8. SickOfSickness

    SickOfSickness Senior Member

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    If I were you, I'd move near a good M.E. doc. After you see them twice and like them.

    Also do you need a doc to be in-network for the plan you have?
  9. minkeygirl

    minkeygirl Senior Member

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    I personally wouldn't move if a doc is willing to have phone appts. Things happen, why uproot the rest of your life?

    It's not that easy to make contacts and get setup. You need to did new dentists, new pcp, too much stuff IMO
  10. SickOfSickness

    SickOfSickness Senior Member

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    I assumed she was considering moving anyway. I believe she has a thread about where to move to. If moving to another state, I would pick a location within 1 hr of a good doc.
    SOC likes this.
  11. SOC

    SOC Moderator and Senior Member

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    Some treatments, like Ampligen or cidovir, you can't get unless you're near the doc. The same may be true of other of the experimental treatments -- Rituximab, for example. That would be a reason to move closer to the doc.

    There's also something to be said to having a doc nearby who understands the illness so you're not always fighting your local GP for every little thing. The ME/CFS specialists might also have other specialists (cardiologists, endocrinologists, neurologists) with whom they have working relationships. You'd probably get better treatment there also.

    I see my specialist about twice a year and by phone/email in between. It's hugely better than not having an ME/CFS specialist, but I can see how it could be better if I were closer.
    SickOfSickness likes this.

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