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Canadians - Which Out of Country Doctor?

Discussion in 'ME/CFS Doctors' started by Oberon, Feb 14, 2017.

  1. Oberon

    Oberon Senior Member

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    Hi All Canadians (others are welcome too.)

    I was wondering what your experiences are with out of country treatment and doctors. Right now I'm considering either the Open Medicine Institute and Dr. De Meirleir, but I'm pretty well open to all other options.

    I was wondering if anyone could elaborate a bit more on their experience and why they chose one doctor over another? I'm struggling to get successful treatment here so I'm contemplating going abroad and would appreciate some advice.

    My story can be found here for those curious to learn of my adventure: http://forums.phoenixrising.me/index.php?threads/seeking-advice-on-what-to-do-next.49243/

    Thank you.
     
  2. Oberon

    Oberon Senior Member

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    A follow up question for this if anyone with experience may know. What happens when your U.S./Euro doctor prescribes a treatment plan for you.

    Do you have to stay abroad for several months, or are you able to take back medication home with you?
     
  3. Hi, I am Canadian, currently living in the States due to my husbands job. I think if you have a doc in Canada that works with you, if your US Specialists rec'd certain drugs, you may be able to get your Canadian doc to prescribe it. Who are you currently seeing in Canada? Have you decided on which specialist to see in the US?
     
  4. Oberon

    Oberon Senior Member

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    Hi Chickpea,

    I'm sorry for the long delay; I completely missed the response. Unfortunately I don't really have a doctor willing to work with me right now but I'm expecting my CFS doctor to return from maternity leave in July and hopefully that will help.

    At this point I would really like to get some testing so I'm trying to decide which doctor to go to in the U.S. Has anyone had success with a doctor in New York or Michigan which would be much closer; or would it be better to travel further away to OMI or Dr. De Meirleir?

    Thank you.
     
  5. Rlman

    Rlman Senior Member

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    Toronto, Canada
    @lakesarecool what part of Canada do you live in? i saw you did a DNA organism test that i think i also did with a Toronto Dr. are you in Toronto? (I wanted to message you but am unable to access your personal profile page.)
     
  6. Daffodil

    Daffodil Senior Member

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    *************D.E.M.E.I.R.L.E.I.R.******************
     
  7. Oberon

    Oberon Senior Member

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    @Rlman, I'm in the GTA. I sent you a Private Message if you want to continue discussing there.
     
    Rlman likes this.
  8. Jennifer J

    Jennifer J Senior Member

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    Southern California
    Hi, @Riman. For future reference, just click on the person's name and instead of clicking on personal profile page, click on start conversation. :)
     
    Last edited: May 9, 2017
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  9. Alvin2

    Alvin2 Senior Member

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    Personally i would go with the OMI, a few things i've read about demeirlier suggests your taking risks by going to him, it could pay off, it could blow up in your face.
    I noticed Ron Davis is a Director at OMI, does that mean they are working with him in his research?
     
    Oberon likes this.
  10. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Toronto, Canada
    Hi @lakesarecool

    I stumbled on a functional medicine doc at 401 / Morningside that sent my blood to Armin Lab in Germany (found coxsackie), my saliva to DiagnosTech in the US, and blood to a lab in London, On. All of this of course was out of pocket.

    He also sent me for vascular ultrasound that found thoracic outlet syndrome.

    The EHC at WCH was comparatively less thorough, as you've probably experienced, although they did send me to a sleep lab and they found sleep apnea. Granted, as my ME doc (we probably have the same one, as mine returns from mat leave in July too) also works at EHC, the EHC doc didn't have much to add, other than giving me an official diagnosis (so it took our health care system 4.5 years to diagnose me, yet I had figured it out when I read the ICC about 6 weeks after I initially got sick).

    I would recommend the functional medicine physician, but it was a 15 month wait for my appointment, and it sounds like you want to act sooner. Though there would be little harm in getting an appointment for 15 months down the road, you can always cancel later. PM if you'd like his contact info.
     
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  11. Oberon

    Oberon Senior Member

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    Hi @ScottTriGuy I will PM you thank you. It wouldn't hurt to get on their list either way as who knows what will be happening in 15 months from now.
     
  12. Rlman

    Rlman Senior Member

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    Toronto, Canada
    Hey Scott, did the EHC suggest anything to help the illness, or do they just do diagnosis?
     
  13. wherearemypillows

    wherearemypillows

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    Alberta, Canada
    @lakesarecool I see Dr. Kaufman at OMI (in fact I just had an appointment with him today!) and I've been quite content with his approach to my care. He's very thorough, knowledgeable, objective (wanting to base things on labs and symptoms, rather than 'hunting' for a certain diagnosis in the way that eg. some LLMD's seem to do), and I feel like I can trust his judgment. Having said that, I overheard it said today that only Dr. Bela Chheda is accepting new patients and that her wait is about 6 months to get in. I would imagine her approach would be similar, though really I can't say with any certainty.

    I chose OMI because I didn't have a narrowed focus for what sort of diagnosis to look for (my main complaints are cognitive dysfunction), people have said good things about them online, and they seem to deal with patients who have all sorts of complex chronic illnesses (rather than specializing in only certain types of patient).

    So far I haven't gotten into any really heavy duty meds, but we've managed to get my family doctor in Canada to rewrite prescriptions that Dr. Kaufman wants so that way I can get them filled in Canada. My local doctor was extremely hesitant to do this at first, but after speaking with him on the phone and working to educate her she's loosened up a bit. Dr. Kaufman seems to be quite open to speaking with other doctors to touch base with them and explain aspects of your condition.

    It seems like OMI has a ton of tests available (at least relative to our Canadian standards!). My initial round of testing last year (which included various viral titres, testing of different immune cells, MCAS testing, some tickborne illness testing, SIBO, and some other stuff I can't recall) ended up being I think around $4K USD. It does get pricey :(
     
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