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Looking for the best CFS Practitioners/Treatment Facilities in the Northeast...
- Thread starter RU72
- Start date
minimus
Senior Member
- Messages
- 140
- Location
- New York, NY
The Northeast has never been a Mecca for ME/CFS patients. Susan Levine is the only specialist left in New York City. Two others - Richard Powell and Derek Enlander - have retired. Otherwise, NY is a wasteland full of God-complex medical specialists who don’t know or care about ME/CFS or any related illnesses (Dysautonomia,MCAS) who treat you like you are invisible or worse.
Susan Levine is very kind, but because she accepts insurance and is the only CFS specialist left in the New York area, she has a very busy practice with a heavy patient load. She is also involved in research, which is another claim on her time. When I go to see her, I find it is best to prepare with specific questions and to ask about treatments I have read about through my own research. She may agree to prescribe the treatment, recommend further testing first, or explain why she thinks the treatment is a bad idea. But office appointments, especially follow-up appointments, are somewhat time limited, so if you are coming a long distance to see her, you may be a bit disappointed that she can’t spend hours on end talking to you.
In Boston, David Systrom has some expertise in ME/CFS, but seems more interested in research than soup-to-nuts treatment. I have seen him and wouldn’t make him my primary ME doctor, as he is only interested in treating some aspects of ME/CFS and also has a very high volume practice.
If traveling and wait lists were non-issues, I would probably head to CA to see David Kaufman, as he does seem focused on deep dive investigations and uses every treatment available, up to and including IVIG and Rituxan. Be aware, however, that “aggressive” treatments sometimes backfire. Even with the best intentions, some doctors will make some patients more sick. (To wit, Kenny DeMeirleir at one time was regarded on this forum as a stellar ME/CFS specialist...he is now viewed mostly with disdain, apparently from overprescribing antibiotics.)
Susan Levine is very kind, but because she accepts insurance and is the only CFS specialist left in the New York area, she has a very busy practice with a heavy patient load. She is also involved in research, which is another claim on her time. When I go to see her, I find it is best to prepare with specific questions and to ask about treatments I have read about through my own research. She may agree to prescribe the treatment, recommend further testing first, or explain why she thinks the treatment is a bad idea. But office appointments, especially follow-up appointments, are somewhat time limited, so if you are coming a long distance to see her, you may be a bit disappointed that she can’t spend hours on end talking to you.
In Boston, David Systrom has some expertise in ME/CFS, but seems more interested in research than soup-to-nuts treatment. I have seen him and wouldn’t make him my primary ME doctor, as he is only interested in treating some aspects of ME/CFS and also has a very high volume practice.
If traveling and wait lists were non-issues, I would probably head to CA to see David Kaufman, as he does seem focused on deep dive investigations and uses every treatment available, up to and including IVIG and Rituxan. Be aware, however, that “aggressive” treatments sometimes backfire. Even with the best intentions, some doctors will make some patients more sick. (To wit, Kenny DeMeirleir at one time was regarded on this forum as a stellar ME/CFS specialist...he is now viewed mostly with disdain, apparently from overprescribing antibiotics.)
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Big thanks for responding. I've seen a few practitioners in the NE, but none with the chops unfortunately to help much. Sounds like I may have to travel. Interesting feedback on Dr. DeMeirleir, as he was a doc. that I considered, because of his focus on GI/metabolic issues.
minimus
Senior Member
- Messages
- 140
- Location
- New York, NY
Did you end up making an appointment?
I will say that Susan Levine is very committed and not at all dogmatic, which means she won’t pretend to know the underlying etiology and necessary treatment for ME/CFS. She runs all the same blood work as other CFS specialists. And she offers the same set of treatments, though she is cautious about prescribing drugs that may be toxic (Valcyte) or can cause adverse events (IVIG). She also is humble enough to refer out her patients to other specialists when needed - rheumatologists, neurologists, etc - but she makes sure these specialists are not dismissive of ME/CFS patients. I think this makes her ideal for patients located in the New York metropolitan area. But if you are coming from far away, I think it may be tougher for you to see other specialists she might recommend you see in the area.
I do read good things on this forum about David Kaufman, but I really am not sure he offers more than Susan Levine does. And my guess is that he is expensive and has a long waiting list.
I will say that Susan Levine is very committed and not at all dogmatic, which means she won’t pretend to know the underlying etiology and necessary treatment for ME/CFS. She runs all the same blood work as other CFS specialists. And she offers the same set of treatments, though she is cautious about prescribing drugs that may be toxic (Valcyte) or can cause adverse events (IVIG). She also is humble enough to refer out her patients to other specialists when needed - rheumatologists, neurologists, etc - but she makes sure these specialists are not dismissive of ME/CFS patients. I think this makes her ideal for patients located in the New York metropolitan area. But if you are coming from far away, I think it may be tougher for you to see other specialists she might recommend you see in the area.
I do read good things on this forum about David Kaufman, but I really am not sure he offers more than Susan Levine does. And my guess is that he is expensive and has a long waiting list.