Lapp, Enlander, levine, in NY/DC area

[aquariusgirl]

I was thinking of going to Levine just cos I'll be in NY and thought she could tell me whether I need valcyte.. but then Joe Brewer says I don't need it....ugh.

 

[SOC]

I was thinking of going to Levine just cos I'll be in NY and thought she could tell me whether I need valcyte.. but then Joe Brewer says I don't need it....ugh.

Yeah, but does he prescribe Valcyte for anyone? Some so-called ME/CFS specialists won't consider it even though most of the top specialists are using it for a significant number (nowhere near all) of their patients.

 

[JaimeS]

@aquariusgirl - thanks. Happy to be corrected!

People think of WV as being part of 'The South', but it's northernish. Atlanta, Georgia, say, is also further away from me than Ottawa.

Although you guys really are making me reconsider Hyde.

Okay, since we're all here: anyone know of a good differential diagnostician in the States? NOT someone who will stamp me with the ME label without checking other things out first? I honestly have a number of other suspects, but ME fits best... so far as I'm aware, but I'm aware of how unaware I really am. I've been speed-reading since I stopped working, but I know I'm not going to mystically acquire all medical knowledge in nine months, and I need a multisystem expert who believes ME is a disease and who knows about diseases with similar presentations.

y is that so hard to find?

Exactly.

-J

 

[aquariusgirl]

yeah he did back in the day... he used to think HHV6 was IT...he doesn't think so any more and this is a man who Rx'd ARVs when the whole XMRV thing was going down. he told me recently that he thinks the folks who responded to the ARV therapy had herpes viruses.....

 

[SOC]

@aquariusgirl - thanks. Happy to be corrected!

People think of WV as being part of 'The South', but it's northernish. Atlanta, Georgia, say, is also further away from me than Ottawa.

Although you guys really are making me reconsider Hyde.

Okay, since we're all here: anyone know of a good differential diagnostician in the States? NOT someone who will stamp me with the ME label without checking other things out first? I honestly have a number of other suspects, but ME fits best... so far as I'm aware, but I'm aware of how unaware I really am. I've been speed-reading since I stopped working, but I know I'm not going to mystically acquire all medical knowledge in nine months, and I need a multisystem expert who believes ME is a disease and who knows about diseases with similar presentations.

As far as I know, the top docs (there's probably less than 10 of them) all check the usual alternative suspects before you get an ME/CFS diagnosis. I think most of them rely on reported PEM as the main determining factor, though. If you have PEM (properly defined, not exercise intolerance, or simple fatigue after exercise), then you'll get an ME/CFS diagnosis.

I believe there's some difficulty in that some of the alternate diagnoses can be comorbid with ME/CFS -- hypothyroid and other endocrine disorders, dysautonomia, some autoimmune diseases -- so it may be necessary to treat and see if that clears up all the ME/CFS-like symptoms. If so, you didn't have ME/CFS. If treatment helps some symptoms, but you still have PEM and other ME/CFS symptoms, then you probably do have ME/CFS.

Some of the top docs require a referral and tentative diagnosis from your GP before they'll give you an appt. Your GP is supposed to have ruled out the easiest alternative diagnoses -- simply hypothyroid, anemia, lupus, and so on.

Sounds to me like you want one of the top docs who does a broad range of testing and uses many different treatment protocols depending on your presentation -- immunological, viral, endocrine, dysautonomia..... I'd say your best bet is to hie yourself to INIM, OMI, or to KDM in Reno. They all do extensive testing and treatment and are still taking patients.

 

[SOC]

yeah he did back in the day... he used to think HHV6 was IT...he doesn't think so any more and this is a man who Rx'd ARVs when the whole XMRV thing was going down. he told me recently that he thinks the folks who responded to the ARV therapy had herpes viruses.....

Well then, he may know what he is talking about when he says you don't need Valcyte. Why are you looking for Valcyte specifically?

 

[JaimeS]

Some of the top docs require a referral and tentative diagnosis from your GP before they'll give you an appt.

I'm lucky enough to have a GP who, while she had no idea what ME was when I walked through the door, is very game and an avid researcher. I'm pretty sure she will refer me wherever I ask.

As far as ruling out the simple stuff? Without going into (boring, exhaustive) detail... That has happened.
Thanks for the recommendations.

-J

 

[Daffodil]

if you want very thorough testing for everything and a doctor who has no bias towards diagnosing you with CFS, I would go to dr. leo galland....but he does not take insurance.

I don't really know much about dr. hyde's testing.

 

[Daffodil]

I just want a doc who will put an IV in my arm and give me amino acid IVs, nutritional IVs at home all that stuff.....y is that so hard to find?

hi acquarius. wouldn't a naturopath do all that stuff?

 

[aquariusgirl]

Takes a doc to authorize a Picc or Hickman line

 

[Daffodil]

Takes a doc to authorize a Picc or Hickman line

couldnt you just get an IV In your arm each time you went?

 

[aquariusgirl]

I think I'm going to need it for a couple of years.. and it's cheaper and easier to do that stuff at home. I had a friend who had a Hickman..did 18 months of IV abx, heparin, glut, amino acids...improved greatly.