What tests did Dr. DeMeirleir order for you?
Looking for a doctor in NYC
- Thread starter Tiger Lily 813
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What tests did Dr. DeMeirleir order for you?
Kati
Patient in training
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Dr Sue Levine is in NYC. (And 'for god sake' Dr Merleir is not God.)
Daffodil
Senior Member
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maybe demi-God
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I just googled him and can't find any practice information for him in NY - is he still in practice there?
Daffodil
Senior Member
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no no he is not in new york....i just think he is the only one to see
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- Connecticut
I've been with Dr. Galland for 17 years. Yes, he is expensive, but he isn't someone who simply glances at your chart 5 minutes before your appointment or your phone consultation. Considerable time is spent studying your condition, test results and potential new treatments. He once said to me, "I'll never give up on you." That meant the world to me. Am I cured? No, but I shudder to imagine where I'd be without his help. We each must choose our own path. Wishing all of you the very best!
17 years? I actually had more hope for my CFS until I came on this forum and realized that the prognosis for most of us was life-long disability.
What treatments has he offered that were helpful to you? Does he use anti-retrovirals?
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- Location
- Connecticut
I don't know if he prescribes anti-retrovirals. In my experience he treats each of his patients in an individual manner. We have used prescription drugs to address different issues; I tolerate herbal and natural remedies better now. Several years ago I asked him about Valcyte as a possibility for me. After consulting with another doctor, he felt that my liver function was too compromised to chance it. I'm 62 and have been sick for over 25 years with at least 6 of those undiagnosed and given the worst medical advice for my condition. It seems that those who get an early diagnosis and consult a knowledgeable doctor have a much better chance for a more active lifestyle, Fireflymd. Best of luck to you!
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Hi Daffodil, I used to be a patient of Dr. John Salerno, DO. While he is a warm person his approach to fatigue is questionable. He pumps patients up on large doses of thyroid medication and average doses of supplements, which helped for a few years but made me worse long-term. Due to my concurrent Adrenal Exhaustion he wanted to put me on natural cortisol but I knew this would make me worse down the road -- more stimulants, the last thing I needed as I felt like he was beating a dead horse. After seeing him for YEARS I stopped, not before spending tens of thousands of dollars. He is not a CFS specialist but has some knowledge, and is an Anti-Ageing specialist who focuses on hormonal balancing (I had a lot of endocrine issues that were not adequately treated by endocrinologists so I looked elsewhere and found him). I now see Dr. Levine, initially because she accepted my insurance, but doesn't any more. I am on an extremely tight budget and find her out of network rates to be fairly good in comparison to others in NYC. However I don't find that she has any real suggestions for treatment, but rather focuses on maintaining my disability records, which I guess I need, but it would be nice to get something else out of it other than that. I still see a nutritional coach monthly who has helped slightly over the years, but I'm not sure why I'm seeing Dr. Levine other than for her to fill out disability forms. I may be a more difficult case since I'm hyper-sensitive to medications and she doesn't want me to risk my well-being by starting to take something my body could reject, so I'm essentially living off of my nutritionists guidance, while Dr. Levine signs my paperwork and sends me bills. Am I missing out on any of her protocols/treatments?
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That is just exploitive. Not ok. If he took on a super active care management relationship with patients then maybe but 10.00/min is price gouging a vulnerable population.
Daffodil
Senior Member
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Dr. Galland is a rich person's doctor. I love the guy and he did try hard to help me but in the end, I wasnt better. He was one of the first doctors I saw, back when there was still money and I thought I could buy my way out of this lol
Dr. Galland isnt specifically a CFS doctor...he just tries to treat complex illnesses - that's a lot of ground to cover and he writes diet books and stuff too. A lot of celebrities see him. His nickname is "the best doctor in America". He doesnt position himself to be for the average person. His office is full of rich New Yorkers lol
In his defence, he may have been able to help me if the LTT ELISPOT testing for Lyme was available when I saw him. But looking back, he at least kept my hope alive when I was suicidal, letting me try various things and not giving up.
He suspected gut connection long, long before conventional doctors did so he is very smart...just maybe spread thin. He is close friends with Dr. Cheney I believe, from med school. Also chinese medicine specialist.
I have an idealized view of him because I saw him after I saw Dr. Levine, who basically said I should give up and f-- off.
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I can totally appreciate how important it is to have somebody competent and good when feeling so totally awful. I'm glad he was able to be helpful to you.
Sorry you had that experience with Dr Levine! She blows me off when she is swamped if I'm seeming too needy, as in after a severe autonomic dysregulation episode when I sent a few emails with heart monitoring traces and questions about disautonomia and POTS but she did at least tell me to find a cardiologist who's an autonomic specialist. I was willing to pay her consult fee for looking at them too. I do respect though it was her way of saying I don't know, find someone who does. Aside from that, she's tried to hang in there regarding the Valtrex and my disability paperwork.
I think all the ME/CFS docs must get compassion fatigue and burn out from time to time unless they can balance the unrewarding clinical work with hopeful new research studies...
Sorry you had that experience with Dr Levine! She blows me off when she is swamped if I'm seeming too needy, as in after a severe autonomic dysregulation episode when I sent a few emails with heart monitoring traces and questions about disautonomia and POTS but she did at least tell me to find a cardiologist who's an autonomic specialist. I was willing to pay her consult fee for looking at them too. I do respect though it was her way of saying I don't know, find someone who does. Aside from that, she's tried to hang in there regarding the Valtrex and my disability paperwork.
I think all the ME/CFS docs must get compassion fatigue and burn out from time to time unless they can balance the unrewarding clinical work with hopeful new research studies...