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Who is a good US doctor?

Discussion in 'ME/CFS Doctors' started by Chrissie, Nov 23, 2009.

  1. Chrissie

    Chrissie

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    Hi i'm hoping to be travelling to America in the new year for help with my ME. I was just wondering if anyone could advise me on who to contact regarding testing and treatment of xmrv? The UK is very limited with drug therapies and also ME specialists, so I was hoping for some more help overseas. If anyone could give me a couple of names of doctors to contact I would be really grateful, i'm just hoping that someone might be able to help.

    Also sorry if I posted this thread in the wrong place!

    Chrissie
     
  2. caledonia

    caledonia

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    I'd go to the source - which would be Reno, Nevada, the Whittemore Peterson Institute and Dr. Peterson.

    I saw a post somewhere (not sure if it was this board, maybe ProHealth?) of someone wanting to start a CFS community in Reno and looking for likeminded people to join in.

    Ok, I just read over on PH, the wait list for Peterson is quite long - 1-2 years, although they are speculating that more doctors might be trained and added at the WPI.

    Nancy Klimas in Miami, Florida could be another possibility. She is just starting her own CFS clinic.
     
  3. anne

    anne Guest

    Check with Peterson, because I've also heard six months. It's worth a call, anyway. You have to fill out paperwork and then they call you.

    Klimas should be less busy since the clinic is new.
     
  4. Chrissie

    Chrissie

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    Thankyou for replying so quickly. I'll get in touch with both, its got to be worth a try. Thankyou!
     
  5. hvs

    hvs Senior Member

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    Yep, Klimas and Peterson are the world experts. Seeing them costs money because they run a bajillion tests, some of which insurance will not reimburse, but you'll spend a lot of money if you go to someone who puts you on a bunch of expensive supplements/stuff, anyway.
     
  6. Samuel

    Samuel Bedbound with NO DOCTOR

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    I spoke with somebody in his office. The waiting list is more than 1000 people, and he only sees one new sufferer per week. Thus, if everybody gets seen once, and in order, you will be seen in about 20 years.

    So I'm interested in knowing what the likely amount of time is to wait.

    (He's the guy I need, too, as I have unusual differential diagnosis issues in addition to Canadian 2003. It will take me months to fill out his packet and get all the medical records he needs.)
     
  7. nora_n

    nora_n

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    europe
    Chrissie, have you considered Meirleir in Belgium?
    He is definitely looking into XMRV and has already treated lots of patients for virus or retrovirus, and he uses redlabs etc.
    He is going to the U.S. now these days and mentioned XMRV to some patients he saw the other day.
    He does use a lot of tests and the bill might add up, but judging by the patient blogs it is worth it.
    (he also tests for enteroviruses and lyme and everything, and treats what he finds. Most have enteroviruses too.)
     
  8. Chrissie

    Chrissie

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    Hi,

    I had an appointment with Merlier in October, but I was advised by my Uk doc not to go as he wasn't able to offer anything new and I was slightly put off by some of his tests for fructose absorbsion etc. I didn't know he was looking into XMRV though, I think for now i'm going to see Kilmas, but thankyou for letting me know about Merlier I think I will definately contact him in future.
     
  9. Alice Band

    Alice Band PWME - ME by Ramsay

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    Chrissie,

    How would you feel about going to see Dr Enlander when he comes to the UK?

    I think that he is due in London in early December. He also goes to Ireland but I don't know his next date or where exactly he goes.

    http://www.enlander.com/main.html
     
  10. Chrissie

    Chrissie

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    I'd be happy to see anyone! The only thing I think may be a problem with staying in the uk is getting access to drugs. I'm not hugely knowledgeable with regard to anti viral treatment but I think you need to be overseen directly with some of the stronger stuff? I don't think I would be able to get my doctor in england to do that. We are thinking along the lines of staying in the US for at least a few months if I was able to get treatment. I'm just not sure how the logistics of these things work!
     
  11. nora_n

    nora_n

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    googling for Me blogs and Meirleir, I found this page which explains RNaseL: http://www.mecfscanberra.org.au/docs/fastest.htm Redlabs was named after this, and Meirleir was in the the tam developing the test (and co-founder of the lab)
    and this http://www.investinme.org/kennydemeirleir.htm

    http://www.mecfs-vic.org.au/mecfs/experts.html
    http://www.mefmaction.net/Patients/Articles/Diagnosis/DrDeMeirleirsLecture/tabid/224/Default.aspx
    http://cfspatientadvocate.blogspot.com/2009/06/dr-kenny-de-meirleir.html there is mention of one year needed
    Anyway, the blogs I read say patients get significantly better in about a year.
     
  12. Tony

    Tony Still working on it all..

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    Just a note on fructose malabsorption and testing. It's a worthwhile test, particularly if you feel better on a wheat free diet. The gut and neuro symptoms and more can certainly run hand in hand as many people have found when eliminating certain foods and addressing gut issues.
    I'm on this little bandwagon because I have fructose malabsorption which my Dr had me test for. Going off the major problem food, wheat, made a significant difference to me.
    I've become a patient of De Meirleir this year, and yes, he said to expect 6 months to see improvement and the process will take about 12 months.
    Good luck with whatever you decide to do.
     
  13. Chrissie

    Chrissie

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    Hi Tony,

    I'ts great to hear you are doing well with Dr Merlier. I wasn't disregarding fructose tests, its just my sister who was taking me to Belguim is a specialist dietician and she felt than in my case I would be demonstrating specific symptoms with regard to fructose and a few of Merlier's other tests. I hope my earlier post did not seem like I was disregarding any of the work he does.

    Best of luck in the future

    Chrissie
     
  14. Tony

    Tony Still working on it all..

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    Hi Chrissie,

    No worries! I just wanted to point out the value of the testing. There are various degrees of malabsorption; it's not like we can have some symptoms so it's fructose. Symptoms may not be obvious either. I believe we really can't know without either testing or at the very least trialing a low fructose diet.
    One of the leading dieticians here who I understand pioneered this fructose work has some info here: http://www.coeliac.com.au/fructose-malabsorption-info.html

    I didn't think you were disregarding KDM's work, just that you feel it may not be right for you. Just to add that he uses a wide variety of treatments, including Nexavir as an antiviral for those he thinks need it.

    I've yet to start KDM's approach. I get a management plan next week. So I'll know over the next 6 months or so how it works for me.

    Cheers
    Tony...:)
     
  15. hvs

    hvs Senior Member

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    Great choice. Congratulations.
     
  16. Michael Dessin

    Michael Dessin Senior Member

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    Dr Demeirleir

    YES! He is known to be a very good doctor...he has had more success than many other doctors including Dr Peterson, yes I said that.

    He runs a ton of tests as well....Your best option for treatment would be Dr Demeirleir.

    He actually is known to be the European equivelant to Dr Cheney/Peterson.

    Mike
     
  17. Scavo86

    Scavo86 Senior Member

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    Might anyone be able to assist with some contact details for Dr Demeirleir? PM if you so wish, that would be amazing, many thanks in anticipation of the help :)
     
  18. Michael Dessin

    Michael Dessin Senior Member

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    Dr d

    Maybe PM tony as he is a current patient? He might be able to help you out?
     
  19. Tony

    Tony Still working on it all..

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    Exactly Mike...:) Scavo and I are in touch. Cheers!
     

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