United States Physician Recommendations?

[Swim15]

I’ve called the NOVA institute with Kilmas/Rey and they aren’t accepting new patients.

Hunter Hopkins isn’t taking new patients and they seem like they have very old school approaches.

I’ve called the center for complex diseases half a dozen times and have yet to reach anyone or get a response from my messages.

I’m in the southeast but at this point I’ll go see anyone good - preferably someone who’s up to date on things obviously and will to try outside the box stuff.

 

[minimus]

Unfortunately, as you may already know, over the last 20 years the number of ME/CFS specialists in the US has fallen, as some physicians have either retired or died and were unable or unwilling to find and train replacements. Predictably, recent medical school graduates aren‘t interested in focusing their professional lives on a disease that is poorly understood, not taught in medical school, still controversial within mainstream medicine, and difficult to treat. The remaining ME/CFS specialists end up at full capacity as a result, with some having to close their practices to new patients.

Paul Cheney in North Carolina is semi-retired due to health problems, but I believe he is accepting new patients on a limited basis. But be aware that he is extremely expensive and he has his own somewhat unique theories about the illness. He doesn’t recommend or rely much on lab testing, but instead tends to prescribe medications that have tended to help his past patients have a somewhat better quality of life (i.e. sleep meds, B12 injections, magnesium injections). He doesn‘t prescribe autonomic function tests, SIBO tests, or in-depth autoimmune testing.

Susan Levine in New York might be accepting new patients or at least maintains a waiting list. She is familiar with the approaches used by David Kaufman and Nancy Klimas. But she has a bustling practice and doesn‘t really have the time to spend hours evaluating new patients.

David Systrom in Boston also is involved in diagnosis and treatment, primarily using his iCPET tests and skin biopsies for small fiber neuropathy. I believe he requires a referral letter from your local physician before accepting you as a new patient. Last I heard, he is scheduling many months out and now just makes treatment recommendations to your local physician. And his treatment recommendations primarily focus on drugs like mestinon, florinef, and midodrine to treat autonomic dysfunction, not other symptoms.

FWIW, the NOVA clinic was not particularly helpful when I went there 2 1/2 years ago. They ran some basic bloodwork, including their natural killer cell panel, and then provided me with fairly conservative treatment recommendations that included famvir and an array of vitamins and other supplements, none of which helped me.

 

[Pyrrhus]

Sometimes the best doctor is one who is compassionate and willing to learn along with you, even if they aren't an ME expert.

My doctor is like that. When I first was diagnosed, she said she believed it was a real disease, but didn't know much more than that. When I asked if she knew of anyone who was a specialist in ME, she said no. But she was willing to run different diagnostic tests and try some treatments, within reason, because doing nothing was not an option to her.

She has learned a lot in the 15+ years I have been with her and we have learned together.

 

[Mary]

@Swim15 - I think @Pyrrhus said it well - Your best bet may be someone like his doctor. I think we have to direct our own treatment and testing. I saw Dr. Kaufman (Center for Complex Diseases) 5 years ago and had a lot of testing done, and the upshot of it all ($1000 later, not including travel and lodging costs) was that he recommended I increase my alpha lipoic acid and CoQ10. He also did SIBO testing, which was negative. I was already taking a boatload of stuff I had cobbled together by the time I saw him. And that was it. I believe he now charges 2 x what he did then, roughly $1,000 a visit. I know he's helped some people with some very specific issues, but for general ME/CFS - PEM, etc. - I don't think he has any answers.

Fortunately a lot of doctors are now doing tele-appointments so you may be able to see someone this way who you could not have before.

I'd suggest putting together a list of things you want to investigate and testing you'd like done (ask people here for suggestions) and then find a doctor who's willing to do what you want. I do have a doctor in southern California who I believe is very open-minded and also knowledgeable and does tele-appointments, and if you'd like more info, let me know and I'll send you a PM.

@Pyrrhus' doctor also sounds very good!

There just isn't anyone anywhere who can solve this insane illness. All they can do is tackle symptoms and parts of it - we don't have any real answers yet.

 

[Mary]

@Swim15 , I'm going to tag @Learner1 here - she's seen some very good doctors and knows a LOT about various testing, etc. and may have some recommendations.

 

[Learner1]

I'd suggest putting together a list of things you want to investigate and testing you'd like done (ask people here for suggestions) and then find a doctor who's willing to do what you want.

This is very good advice from Mary. I think it's very difficult to get well with only one doctor. Each doctor has a number of other patients and is not always focused on fixing your issue, so I think multiplexing the prop process and having more brains thinking about it for you will be helpful especially when you have different specialties. I've been seeing two neurologists, a hematologist, an oncologist, and Emmy / CFS expert, and four naturopathic doctors. There's a model I use to kind of pigeonhole who's doing what in my care plan come up with sometimes I give the same problem to three different doctors and see what they all say and new insights happen. So I think figuring out a list of what you want is important then looking at which doctors can solve that set of problems is also useful.

I'm going to tag @Learner1 here - she's seen some very good doctors and knows a LOT about various testing, etc. and may have some recommendations.

@minimus gave a pretty decent rundown of the doctors. If you believe weird infections and immunodeficiency or autoimmunity is a problem, then I would seek out Kaufman, Chedda, Klimas or Levine. Additionally, finding a immunologists is useful, possibly one who specializes in dishonomia or AIDS as opposed to an allergy and asthma doctor. And, someone who is open to the nutritional supplements.

endocrinologist might have some use, although the ones I've met have been worthless. But endocrine issues are a big part of this disease so having doctors who can run a saliva cortisol test for 24 hours or doctors you know about all the variations of thyroid treatments and will do a full thyroid panel and manage your sex hormones as useful.

 

[valentinelynx]

If you believe weird infections and immunodeficiency or autoimmunity is a problem, then I would seek out Kaufman, Chedda, Klimas or Levine.

Just a comment: I didn't have the slightest clue that I had immunodeficiency or autoimmune issues and I was surprised to find that both were issues for me. Drs. Kaufman, Chheda and Curtin and CCD are expert at finding things that no one else would think of looking for.

 

[Svetlana82]

This is very good advice from Mary. I think it's very difficult to get well with only one doctor. Each doctor has a number of other patients and is not always focused on fixing your issue, so I think multiplexing the prop process and having more brains thinking about it for you will be helpful especially when you have different specialties. I've been seeing two neurologists, a hematologist, an oncologist, and Emmy / CFS expert, and four naturopathic doctors. There's a model I use to kind of pigeonhole who's doing what in my care plan come up with sometimes I give the same problem to three different doctors and see what they all say and new insights happen. So I think figuring out a list of what you want is important then looking at which doctors can solve that set of problems is also useful.


@minimus gave a pretty decent rundown of the doctors. If you believe weird infections and immunodeficiency or autoimmunity is a problem, then I would seek out Kaufman, Chedda, Klimas or Levine. Additionally, finding a immunologists is useful, possibly one who specializes in dishonomia or AIDS as opposed to an allergy and asthma doctor. And, someone who is open to the nutritional supplements.

endocrinologist might have some use, although the ones I've met have been worthless. But endocrine issues are a big part of this disease so having doctors who can run a saliva cortisol test for 24 hours or doctors you know about all the variations of thyroid treatments and will do a full thyroid panel and manage your sex hormones as useful.

@Lerner1 - could you please share what doctor was able to help you? Thanks!

 

[Mary]

@Learner1 - I'm tagging you again here - see @Svetlana82 's post above (@Svetlana82 , you misspelled @Learner1 's user name, so your tag didn't work )

 

[Svetlana82]

@Learner1 - I'm tagging you again here - see @Svetlana82 's post above (@Svetlana82 , you misspelled @Learner1 's user name, so your tag didn't work )

Thank you, Mary! 🙏

 

[Svetlana82]

@Learner1 - could you please share what doctor was able to help you? Thanks!

 

[Learner1]

Thanks @Mary !

@Svetlana82 I see Dr Kaufman at the Center for Complex Diseases. I also see a Seattle area dysautonomia specialist, as well as three doctors at a naturopathic doctor practice. All have helped with different aspects of my care.

Best wishes...