Discussion in 'ME/CFS Doctors' started by Sallyvw, Feb 9, 2018.
List in order Best Top 5 ME/CFS Doctors
I’m still looking....
Would like to hear your experience.
Also if they do phone or Skype consult for out of state patients, helpful with out state insurance or do a payments plan if insurance is not accepted.
I know there is no cure for CFS/ME but I need a treatment, it been a struggle for 12 years and getting worse. I need help!!!
Would love to hear as well
I see Dr. Kaufman @ Center for Complex Diseases in Mountain View, CA. He is an amazing doctor.
Dr Susan Levine in NYC is very experienced, knowledgeable, and compassionate
Is he accepting new patients?
Is she accepting new patients?
Went and seen multiple, all fails. There is no best one, they all have their own theories/beliefs and treat you that way.
One might diagnose you with lyme disease and put you on longterm antibiotic treatment, the other one wants you on years long antiviral medication. Etc. They all differ.
There is no cure for ME (yet), it's better to save your money until better diagnostics are available. I made the mistake to fully trust these docs, i have paid with a decline in health.... and a wallet that now feels a lot lighter.
Just my 2 cents.
I see Dr. Levine in New York City , she is one of the nicest most knowledgeable people I have encountered in regards to CFS
@Thinktank , that is my concern too. The single minded approach that sometimes works, sometimes not and is so costly.
@john66 , can you elaborate on her style of treatment, her approach to testing etc.
Yes, this is a very serious matter. Alas, up until now, this has also been our experience, on every point you make. Yet, the thing that gets me is that you keep hearing of folks who have gotten so well.
@Sallyvw, I do not know but I would suggest you call them and ask. I was told he wasn't accepting patients at one point and I called anyway and he was so I think things can change quickly. Also there is another doctor there, I've only heard good things about her, Dr. Chheda.
Here is a link to their website - the practice is called Center for Complex Diseases:
I am a patient of Dr. Levine. She is kind, sympathetic, knowledgeable, affordable, and willing to prescribe antivirals and sleep meds if you request them. The only caveat I have is that she can be somewhat defeatist if you have been ill a long time, saying there isn't all that much that she can do to help you.
I do admire the fact that she has stuck her neck out in specializing in ME/CFS and fibromyalgia in Manhattan. This is a place where way too many doctors have a "God complex", even the ones who are completely ineffectual. A few of these traditional doctors have rolled their eyes when I have mentioned that I am a patient of Levine, and one told me he generally does not treat Levine's patients because they are, in his words, "crazy".
Sadly, it seems that more ME/CFS medical specialists are retiring or dying -- Cheney, Enlander, Lapp, Lerner -- than are entering the field. With fewer doctors specializing in ME/CFS, some of the remaining experts like Peterson and Bateman no longer seem to be accepting new patients. Even MCAS specialists like Afrin and Dempsey, who arguably are treating a sub-type of ME/CFS, no longer accept new patients.
Levine mentioned to me that she has been trying to recruit a newly minted MD to work with her as an ME/CFS specialist but that these efforts have failed. According to Levine, young doctors she has interviewed are reluctant to enter a field in which they can offer very little in terms of treatment (a catch-22 resulting from decades of neglect by the CDC, the NIH, and the PACE charlatans.)
Has anyone seen Dr David Systrom in Boston?
I have! He's very kind and sympathetic, and he seems to be very knowledgeable.
@RebeccaRe , was he able to help you in any way? What does he do as far as testing/treatment?
It's a very long way for me to travel.
Before I even saw him one of the nurses in his office did a brief exercise test (just five minutes of stepping up and down on and off a stool). Then I was taken to his office where we chatted for a while, and he reviewed my results. He said that I fit a certain pattern that he often sees in his pateints. Then he ordered pretty extensive blood tests which mainly looked at my immune system.
He also scheduled me for a skin biopsy and an invasive cardiopulmonary exercise test, which I had to come back for the following month. This test was scheduled for first thing in the morning, so you'd probably have to come in the day before. This is an exercise test which is done after they insert one catheter into an artery in your neck, and another into the vein in your heart so they can test blood as you exercise. It wasn't terrible, but it wasn't terribly fun either, and it took a few days for me to recover from the test. Also, although the test itself doesn't take too long, between getting blood tests, getting the catheters in, removing the catheters, getting all of the procedures explained to me, all in all I was in the hospital for 4 hours.
Based on the results of the test he put me on Mestinon, and I've scheduled a follow up (non-invasive) exercise test and appointment with him in a few months. I've had to check in with the people in his office a few times as my Mestinon dosage has been adjusted, and they're all lovely and patiently answer all of my questions. I'm not sure what will happen if the Mestinon proves not to help--he did mention that there were some other options.
So that's my experience with him. You'll have to decide if he's the right choice for you, but you can feel free to message me and ask me any more questions you may have. You can also read more about the invasive exercise test in this article, and mestinon in this article.
I tried to message you or start a conversation with some more questions, not sure I did it correctly tho....
Just wanted to let ppl know that Dr Levine is not taking any new patients.
You can also try a Google Site Search
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