Dr. Feel-Good?

[Rockt]

Are there any doctors who treat ME/CFS with some degree of success?

What do I mean by "some degree of success"? Well, perhaps 20-30% improvment, a doctor who can address things like mental and physical PEM, low blood pressure, hypoperfusion, etc. and at least improve functionality. Sort of (temporarily, I hope) giving up on "the cure" and looking for some measure of improvement.

Tried lots of stuff and I'm highly interested in things like XMRV, methylation, etc., but can't do it on my own. Too much cognitive dysfunction. Need a doc who can point me in the right direction.

Any help/suggestions are greatly appreciated.

 

[Tony]

Hi Rockt,

Yes there are, but there are no guarantees with any treatment or doctor. If you let us know where you are or where you're prepared to travel to there may be some suggestions for you.

 

[Rockt]

Thanks Tony.

Well, I live in Ontario Canada, but I don't know of any docs in the area, so I might have to travel. I'd be willing to do so, if I heard good reports on the doc and if we could limit the number of follow-ups, or do some of it by phone. Getting pretty desperate, so whatever it takes.

I saw Dr, Lerner in Michigan, but he couldn't find any pathogens, which I think is a good thing.

Please feel free to suggest anywhere.

Thanks.

 

[rlc]

Hi Rockt, do anything you can to see Doctor Byron Hyde, he is the worlds leading expert in M.E and has been working only with M.E patient for the last twenty five years! First appointments are a day and a half, he checks out his patients properly, he uses SPEC, PET scans to diagnose his patients, he also finds that up to eighty percent of patients that are sent to him with a CFS diagnosis have been mis diagnosed, He finds their true illnesses and then sends them to other speacilists for treatment. Contact details are
Mail

Dr. Byron Hyde, Chairman
121 Iona Street
Ottawa Ontario
K1Y 3M1
Canada

Fax

(613) 523-1958

E-mail

info@nightingale.ca

The nightingale foundation which he set up has a website found here. http://www.nightingale.ca/index.php?target=home there is also lots of info about him on the net

All the best

 

[Rockt]

Thanks for this ric.

Have you seen Dr. Hyde or do you know anyone who has? If so, I'd love to hear from you.

I contacted the Nightingale Foundation about a year ago, via email and well, they were pretty short with me. I asked about the kinds of treatment they do, succeses they've had, etc. and they replied that there's no cure for M.E. and that Dr. Hyde doesn't do any treatments. I was left with the impression that you would get a diagnosis without any help for it and that would kind of be a waste of time and money, (I think about $6000 at the time). You're saying he refers you to other specialists for treatment?

 

[alice1]

Hi Rockt I'm in Toronto.I emailed Dr Hyde about a month ago and haven't heard back at all.
I went down to Miami to see Dr Klimas just to get exstensive blood work done that no one was willing to do here.
She also has suggested different treatments and as of 2 days ago i started Famvir.
Of course there are docs who are closer but no such luck in Ontario.
I believe Lerner is in Michigan.

 

[rlc]

Hi rockt, no i havn't seen him i live in new zealand, i found out a while ago that i had been misdiagnosed for almost two decades, so i don't have any need to see him now. Yes he is a diagnostican who works solely with M.E/ cfs diagnosed people, and investigates them intensively to find their true illness and then refers to what ever speacialists are necessary. Dispite all the bullshit that is put out about M.E. it is relatively easy to diagnose someone with it in about a week, there are measurable changes in brain function that are found on SPECT,PET, and QEEG brain scans that are only found in people with true ME, he runs these tests if you don't fail them, he will intensively test you for everything else until your correct diagnosis is found and then refer you on for treatment. So if you can get to see him i'd say it would be well worth it.

All the best

 

[Rockt]

Thanks Alice1.

That must have been a very hard trip to do when you're sick. Do you feel it was worth it. If it's not too personal, did Dr. Klimas' investigation show a viral infection that Famvir will hopefully help? Did she help in any other ways?

I saw Dr. Lerner. He tested for EVERYTHING but I was negative, which, again, I'm hoping is a good sign. PEM is pretty brutal though, especially mental.

Have you seen or do you know anything about Dr. Allison Bested. Other than Dr. Hyde she seems to be the only physician that comes up as dealing with ME/CFS in Ontario. I've seen many specialists here, but they pretty much just blow me off, refer me to someone else if I'm lucky, who in turn blow me off or refer me to someone else.

 

[Rockt]

Thanks again ric.

i really like the sound of Dr. Hyde's experience and thorough knowledge, I just don't want to spend $6000 to find out what I have, but not get any treatment. This was really the indication I got when I emailed them. You have put it differently, so I've re-emailed them and hopefully will get clarification.

 

[rlc]

Hi Rockt, here is a interview with Dr Hyde it gives a good idea of the quality of the man and how intensivly he investigates his patients http://grubstreet.ca/articles/interviews/byronmhyde.htm like i said he finds over 80% of people who come to him with a CFS diagnosis have been misdiagnosed so at least you'll deffinatly know whats going on if you see him. I wish i'd been able to see someone of his caliber when i first got sick, it would of saved me from two decades of needless suffering.

I'm glad there is one organisation in the world being honest about ME it causes measurable damage to the brain and like MS and Parkinson's there is as of yet no cure for brain damage, hopefully the work into stem cells etc will in the future lead to some help for people with neurological diseases. Be careful of other doctors offering cures, theres alot of Charlatans out there.

All the best

 

[Rockt]

Thanks again ric.

I had read that interview before. Very interesting man. Again, I just worry about spending all that money and only getting a diagnosis. I kind of don't care what the diagnosis is, I want to get better!, (I know that's implistic and I need to get the right answer in order to treat, but...).

Here's the response I got back from the Nightingale Foundation today:

"I am attaching a letter written by Dr. Hyde for those wishing to become new patients. If you still wish to see Dr. Hyde please send us your full mailing address and we will mail you out a new patient questionnaire. As for treatments it depends on what Dr. Hyde finds in his investigation. He usually refers patient to an appropriate specialist."

So that's promising and better than how they responed last time. We'll see.

 

[Lala]

Dr. Hyde sounds very good through this interview. I am looking for such Dr. in Europe. If anybody knows, please let me know..

 

[Rockt]

Got more info. from the Nightingale Foundation. 1-2 yr. wait time to see Dr. Hyde.

Plan B anyone?

Seriously, anyone with any suggestions, please chime in.

Thanks.

 

[leaves]

you could see dr Klimas, or wait; word on the street is that wpi will start seeing patients this year

 

[chickpea]

Rockt - curious of what you ended up doing?