The Power and Pitfalls of Omics: George Davey Smith’s storming talk at ME/CFS conference
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CFS/ME specialists in or near Ohio

Discussion in 'ME/CFS Doctors' started by Andielyn, May 19, 2015.

  1. Andielyn

    Andielyn Senior Member

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    Hi all:

    I searched the previous discussions and didn't see anything new so my apologies if this has been addressed before and often.

    I have not been diagnosed but have many of the symptoms of CFS/ME and at the point I want to seek an evaluation by a CFS/ME specialist. From my initial poking around it doesn't look like there are many. I am willing to travel, but would prefer someone within a day's drive and also one that accepts insurance. Have to say I am quite shocked it is so hard to find a true blue CFS/ME specialist.

    Alternately, the question would be, what specialty does this usually fall under? Rheumatology? Also it seems like CFS/ME is clumped together with fibromyalgia. I don't suspect I have fibromyalgia (although I do have intermittent pain, but not matching the characteristics of fibro.)

    If I have CFS I suspect it was triggered by a viral onset so I am particularly looking at someone whose diagnosis and treatment includes looking at viral titers, etc.

    Thanks for any help or experiences you might share. ~Andielyn
     
  2. Ema

    Ema Senior Member

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    Midwest USA
    Hi @Andielyn,

    Dr A Martin Lerner, just outside of Detroit, is probably the closest to you, depending where you live in Ohio. He treats a very specific viral profile of those with ME/CFS with antivirals for the most part. He does not have a holistic approach though and does not believe in supplements or the like. It's his protocol (which you can find out on his website) or the highway. That said, he does have a track record of helping people who fit his profile improve and he certainly is not scared of using antivirals in high doses necessary to eradicate chronic infections.

    http://www.treatmentcenterforcfs.com/

    Another possibility is Dr Dale Guyer in Indianapolis but reviews I have heard are mixed and he is very expensive. But it might be worth a try, depending on what you feel your major issues and goals are for treatment.

    http://www.guyerinstitute.com/

    The Midwest doesn't have very many specialists unfortunately. There just aren't that many to begin with and most are congregated on the coasts.

    Good luck!
     
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  3. Andielyn

    Andielyn Senior Member

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    Hi @Ema thank you! Dr. Lerner is mentioned in a book I'm reading on CFS/ME so I am glad to hear your take. His center was not listed though so I wasn't sure if he was practicing. ~Andielyn
     
  4. SOC

    SOC

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    My daughter and I saw Dr Lerner. He did us a LOT of good. I would agree with @Ema's assessment of him. He's a good man, but definitely old school, my-way-or-the-highway.

    If what you are looking for is an evaluation, then he would be a fine specialist to see. He'll run a lot of labs and do the diagnosis. If he says you have ME/CFS, then you can decide if you want to follow through with his treatment plan or seek out a top specialist with a more diverse set of treatment options. We stayed with him about 2 years for antiviral treatment and were greatly improved during that time. After that we switched to a specialist who was willing to look at a bigger picture and provide more treatments.

    There are very, very, very few top ME/CFS specialists. Most have long waiting lists. This is a reality of this illness you are going to have to accept. The sooner you get on a waiting list, the better. My best advice is to go to Dr Lerner for a diagnosis since he is close and has a short wait compared to other ME/CFS specialists. In the meantime, get on a waiting list somewhere like INIM or OMI. It can be months, or even years, before you can see some specialists, so get on a waiting list or make an appointment 6 months out even if you're not sure at the moment what you want to do. You can always change your mind as the time approaches.

    If you live in the Midwest you are screwed. We have no choice but to travel if we want treatment. Fortunately, you only need to travel to the specialist once or twice a year and can do phone appointments in between.
     
    Last edited: May 19, 2015
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  5. Andielyn

    Andielyn Senior Member

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    Hi @SOC Thanks! It's good to hear your experience with him. That's great advice to go ahead and get on the waiting list elsewhere. I'm at the point I'm "multitasking" my health, so to speak. I've been diagnosed with anemia but the reason is not yet known and have been through some extensive testing for that. Meanwhile, I've also scheduled an appointment with a sleep doc to pursue a sleep study. It blows my mind there aren't good specialists more readily available.

    I've learned from this community in the short time I've been here is if you suspect then act accordingly. I'm pacing myself and learning, as I am fairly sure what I'm experiencing in part are PEMs, which I've learned is a hallmark symptom, and this all started after a bout with mono.

    I so appreciate how helpful everyone here is...thank you to all! ~Andielyn
     
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  6. jeff_w

    jeff_w Senior Member

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    Completely agree with all of the above. Best to get yourself on a waiting list ASAP. You're not locked in to anything by doing this. So, you've got nothing to lose and so much (your life, really) to gain.
     
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  7. jeff_w

    jeff_w Senior Member

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    I'll add another piece of advice to this: Go to one of the top known specialists. Don't go to anyone unknown who calls themselves a "CFS Specialist." There are many doctors out there who do this, and they know nothing. They will be either useless or harmful. There are many stories on here of people who have been screwed by such "specialists."
     
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  8. SOC

    SOC

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    Yes, we're probably talking less than ten true top ME/CFS specialists in the world. A significant proportion of them currently have closed practices. We are a grossly under-served population.

    There are far, far too many people who tout themselves as "CFS Specialists" when what they really treat is the symptom chronic fatigue. These people know practically nothing about the neuroimmune condition we know as ME/CFS/SEID and usually provide useless, if not harmful, treatments. Then there's the so-called CFS/ME specialists (mostly in the UK and the Netherlands) who believe that ME/CFS is a psychiatric condition appropriately treated with CBT and GET. A genuine ME/CFS patient is only wasting his or her time, and possibly doing him- or herself great harm, accepting treatment from any of these non-expert, self-proclaimed "CFS specialists".
     
  9. Andielyn

    Andielyn Senior Member

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    @jeff_w @SOC Thanks for such great advice. A couple weeks ago I found the name of a "specialist" within an hour's drive and just looking at their website I got a totally bad impression. I definitely do not want to go down that road! With so little good information out there (IMHO) that is why I'm turning to this community for advice and recommendations and you've all been sooo helpful. Thanks!

    My current plan: 1) get an appt with Dr. Lerner (3 calls so far but just getting their off-hours recording) ; 2) scheduled for a sleep doctor with the goal of getting a sleep study done (this is not with a CFS specialist) --was able to get my appointment moved from July to next week by requesting a different location ; 3) continuing to follow-up on my anemia/iron issues; 4) get on a waiting list somewhere else besides Dr. Lerner (may need help with this) ; and 5) lifestyle changes to preserve/pace/avoid adding insult to injury in the event I do have CFS (easier said than done.)

    Thanks for all your help! ~Andielyn
     
  10. SOC

    SOC

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    That's what most of us do. :) I was clueless and helpless the years before I found Phoenix Rising. It was here that I figured out what I needed to do and which doctors I needed to see. My PCP had few ideas what to do for me (and most of them very wrong) and no idea where to refer me for decent specialist care. It's appalling how little support there is for us out there.

    Sounds like an excellent plan! Good luck!

    BTW... Be aware that sleep doctors prescribe assuming that you are healthy other than the sleep disorder they are diagnosing. Sometimes they will insist that your symptoms will all go away if only you would practice good sleep hygiene and then forbid you to nap or sleep on your body's natural cycle. This may make sense for healthy people, but could be completely wrong for people with ME/CFS. So make sure you don't take their advice as absolute if it goes against what you know about what you need to do to improve your ME/CFS symptoms (or not get worse, anyway).
     
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  11. Andielyn

    Andielyn Senior Member

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    Great point! I will definitely keep that in mind. Since I last wrote I have been able to get an appointment with Dr. Lerner, so down this rabbit hole I go :eek:. ~Andielyn
     
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