New era for ME/CFS research as top cytokine study attracts media headlines
The immune systems of patients who have recently developed ME/CFS look markedly different from those who have been ill for much longer, according to a major new study from Drs. Ian Lipkin and Mady Hornig at Columbia University. This shift in immune function hadn’t been seen before.
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advice on new Dr.

Discussion in 'ME/CFS Doctors' started by jann1033, Apr 29, 2014.

  1. jann1033

    jann1033 Senior Member

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    None on good Dr lists near me. CFS dxed 1988, old records no longer exist (with all the tests done ect).. That Dr no longer"believes" in CFS but is out of network anyway.

    Last attempt of dozens, rheumatologist at Cleveland clinic, said she wanted to hear "whole" history but stopped me after initial week's worth and started asking me which of my parents were more distant(??????? What???), she feels my problem is being overweight and just" having less energy than other people." Duh yeah but neither problem existed pre Bronchitis> pre CFS. She just waved her hand at me when I told her that.

    Microsomal antibody test she ordered came back positive ( she laughed and said oh we don't treat that anyway)

    Have appointment with Cleveland clinic endocrinologist but wondering if I should bother. She'll see my chart and rheumatologist's opinion so would she just agree?

    Its the best hospital in my network but am really sick of being blown off for this. Any advice?
     
  2. minkeygirl

    minkeygirl Senior Member

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    I'm from Cleveland and as far as I know there is no one there. I saw an Endocrinologist in Lyndhurst about 11 years ago and he did nothing for me. I think he did the poor man's POT's test.

    Can you afford to go to someone on your own? I pay to see a Naturopath and it's well worth it.

    Can you travel? That will make a big difference. There is a a guy in Indiana. I think his name is Guyer? Someone will know. Also Charlotte NC.

    It's so demoralizing to be treated this way.
     
  3. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    @jann1033

    Sorry about that but if you continue to approach mainstream docs, this is likely what you will get! Many of us travel to get knowledgeable care--yes, very difficult and expensive, but what are the alternatives?

    Dr. Blair Grubb in Toledo specializes in dysautonomia and is very well liked. I don't know of anyone else in Ohio. Some do like Dr. Guyer in Indianapolis, but again, it would be expensive.

    Best,
    Sushi
     
  4. jann1033

    jann1033 Senior Member

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    I've looked into traveling but not sure how I could swing that at the present. Thanks though. Most drs. anywhere near are fibro related and I think push more get. I'll look at the Indiana one though.
     
  5. SOC

    SOC Senior Member

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    @jann1033
    Dr A. Martin Lerner is in the Detroit suburbs. My daughter and I saw him for a couple of years and got a large improvement. In fact, he got my daughter back into remission. IMO, he does not have as broad a variety of treatments available as some other ME/CFS specialists, but he's definitely worth trying. Check to see if he's in your network. I think he was in mine and he's farther from me than he is from you. :)
     
  6. jann1033

    jann1033 Senior Member

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    I just looked him up and he's only 3+ hrs from me. Is he just natural or prescriptions too? Kind if excited if he's on my network
     
  7. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    He mostly treats viruses--and uses prescription antivirals.

    Sushi
     
    Valentijn likes this.
  8. SOC

    SOC Senior Member

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    He not "natural" at all. He's old school traditional doctor. He is an infectious disease doc, so that's his focus.
     
    Valentijn and WillowJ like this.

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