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Who are the top American CFS/ME specialtists and their locations please.

Discussion in 'ME/CFS Doctors' started by charlie1, Mar 11, 2015.

  1. charlie1

    charlie1 Senior Member

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    Not family doctors but specialists who treat only CFS/ME and where their clinics are.

    Thanks!
     
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  2. nicwea

    nicwea

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    Dr. Kaufman at Open Medicine Clinic in Mountain View, CA. I just saw him on Monday and he is absolutely wonderful.
     
    Last edited: Mar 11, 2015
  3. Hip

    Hip Senior Member

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    Have a look at the bottom of this ME/CFS roadmap document.
     
  4. charlie1

    charlie1 Senior Member

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    @Hip
    Thanks for the list of American doctors. Exactly what I was looking for.
    I'm looking forward to reading through the road map. I didn't know it existed!
     
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  5. charlie1

    charlie1 Senior Member

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    I've heard lots of great things abut r. Kaufman but he's too far for me to travel.
    I'm not sure that antivirals are what's needed in my case but perhaps if and when I can travel again, I'll pursue Dr. Lerner. (listed on the roadmap). He's located in MIchigan is the closest state to where I live in Canada.
     
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  6. SOC

    SOC

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    My family had major improvements under the care of Dr Lerner. The only caution I would give is that his treatment protocols are somewhat limited compared to other top specialists. His main focus is pathogens. He doesn't do much to test or treat immune, OI, or endocrine issues, for example. Also, he insisted that we see him in person every 4-6 weeks, which was hard, but that might only be true of patients on Valcyte.

    If he is the closest specialist to you, I would encourage you to see him. We were very happy with the success we had under his care. Just be aware of his limitations. You might want to see him, get all the testing, and see what treatment plan he offers. If it looks right for you, great. If not, you'll at least have had all the testing and can forward it to another specialist or your local GP.

    We eventually moved on to a specialist who has experience with longer-term maintenance of the health of ME/CFS patients and has a broader range of treatment options. Dr Lerner effectively saved our lives, but the new specialist is improving our quality of life all the time.

    In addition, it's physically much easier (and cheaper) to fly to see the farther specialist once or twice a year, than to drive 6-7 hours every 4-6 weeks to see Dr Lerner. Depending on where you live, that may or may not be an issue for you.
     
  7. oceiv

    oceiv Senior Member

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    Last edited: Mar 11, 2015
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  8. charlie1

    charlie1 Senior Member

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    That has been a concern of mine. But like you said, I could get the testing done and decide what to do from there. How does he compare to the other specialists with concern to which/how many viruses he tests?

    This, would definitely be a problem for me.Travelling 2x/ yr by plane for a few hrs would be better. I'll have to look @Hip's roadmap and do some research. Who do you see now?

    Thanks SOC, I appreciate your input.
     
  9. SOC

    SOC

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    My problem with those lists is that they tend to be largely populated by fibromyalgia doctors who are either not interested in treating ME/CFS or think fibro and ME/CFS are the same thing (a pretty outdated idea now) and therefore won't give you appropriate treatment -- they mostly want to deal only with pain. I wasted a lot of time checking out doctors on these lists hoping not to have to travel so far. It was a total bust. My feeling nowadays is: If you haven't heard about them here at PR, they're probably not going to do you a lot of good. Some, maybe; a lot, probably not.
     
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  10. SOC

    SOC

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    He does pretty extensive pathogen testing -- all the herpesviruses, Lyme, coxsackie, C. pneumoniae, etc. I don't know if he does the most progressive Lyme tests, though. You'd get the majority of pathogen tests most other top specialists would order, although there are always likely to be a few differences. KDM does more extensive tick-borne illness testing, for example.

    As far as I know, Dr Lerner does no immune testing or treatment.

    Now we see Dr Rey (Dr Klimas' associate) at INIM. We're very happy with the treatment we get from her. If you can fly into Ft Lauderdale and see an INIM doc at the Davie office (as opposed to flying into the Miami airport for the Kendall office), the travel isn't bad at all. The Ft Lauderdale airport is pleasant and easy to manage and the office isn't very far from the airport (5 minute drive) and you can stay at an airport hotel to minimize travel.
     
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  11. charlie1

    charlie1 Senior Member

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    That's good information..thanks! The drive from my place to Detroit is one hour, hanging around in the airport another 2hrs and flight would be 3 hrs. Long day but doable. If you were in my shoes (ill 3 yrs) and have had no testing done re: virology or immunology, would you go to straight to Florida and forgo Dr. Lerner?

    I will be going to Toronto to see a doctor who is not a specialist but who can test me for hormone deficiencies such as cortisol and DHEA and whatever else he feels appropriate. Those blood tests would be paid for with by the provincial health plan so that is a bonus. He also does a CFS panel and EBV testing (I must pay for those) to see if a virus is present or has been present at one time but he doesn't test for actual titers. His treatment is via infusions but I'm not sure I would go that route as I'm not sure of the success rate.
    So first toToronto. Then I'll decide upon further travel outside of Ontario.
    Thanks :)
     
  12. SOC

    SOC

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    I probably would go straight to INIM unless I was confident I had a herpesvirus and felt strongly about getting Valcyte. Don't get me wrong -- Dr Lerner is great. I just think INIM or OMI gives you a broader range of treatment and is easier in the long run.

    Don't forget that you can ask for wheelchair assistance when you make your airline reservation. That makes the air travel less difficult. For the time you are in the airport you can let the wheelchair assistant deal with ticket, security, and luggage issues. So the 2 hours in the airport is not as bad as it might be.

    Good luck with that! If you're seriously considering seeing either Dr Lerner or an INIM doctor, I suggest you don't waste your money on the CFS panel and EBV testing. They're probably not going to tell you anything useful and you'll have to pay for the better testing you'll get from the specialist. So save your money for the helpful tests. ;)

    Dr Lerner likes to do his own testing with tests and labs he trusts, so he might want to duplicate all or most of the testing you get from your Toronto doctor. However, if the testing in Toronto is free to you, probably no harm done. INIM docs will probably not duplicate the hormone testing and other basic blood and urine tests, but will want to do better EBV, etc testing than you are likely to get from the Toronto doc.
     
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  13. Billt

    Billt Senior Member

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    Did he offer you some help ? only sak because I am taking my son there next month
     
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  14. nicwea

    nicwea

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    I was very impressed with Dr. Kaufman! He took a great deal of time talking to my husband and me. He was very thorough and kind. He listened and asked questions. He tested me for SIBO there in his office and then drew 20 vials of blood. He is checking for autoimmune diseases, virus, and genetic mutations. I will talk to him again in by phone in about two weeks. I feel he will definitely be worth the flight half way across the county. ;-)
     
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  15. Kati

    Kati Patient in training

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    @Billt very glad you are taking your son there. Great choice.
     
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  16. Billt

    Billt Senior Member

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    Thanks, please keep us informed on your progress
     
  17. Billt

    Billt Senior Member

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    Sure hope they can help
     
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  18. zrobinso

    zrobinso

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    That is really great news! How difficult was it to get an appointment?
     
  19. Billt

    Billt Senior Member

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    Not sure if you are asking me, but it was very easy. They are about 1 month out on appts. They have sent paperwork to us that we need to fill out and send back before we go. We were set for April but Dr had jury duty and we had to reset
     
  20. charlie1

    charlie1 Senior Member

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    Will your son be seeing Dr. Kaufman (he sounds great!) or someone else?

    I started this thread in the hopes that I'd find a good doctor close to Ontario, Canada but no such luck. I'm still in the process of trying to evaluate if the long distance travel is doable for me. Florida with Dr. Klimas will be less distance but they aren't taking any new patients and just trying to get on the wait list is impossible..nobody answers the phone :(
     

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