Cleveland Clinic & XMRV & CFS doctors?

[FernRhizome]

Does anyone know if the Cleveland Clinic is doing anything with the CFS piece of XMRV? I know the research there came out of the cancer department but I wondered if any of their autonomic or infectious disease or mitochondrial doctors are involved in XMRV research or treating CFS patients?

Are there any CFS friendly doctors at the Cleveland Clinic? I may be heading there this summer for another appt. and thought it worth checking.

I've heard there are some good dysautonomia doctors there and would love to know their names.

 

[Jimk]

Fern- I noticed that no one had replied to your thread. Despite being a superb research institution, Cleveland Clinic is quite conventional and cautious in the clinical domain, especially in relation to CFS and Fibro. Doctors i've talked to about the XMRV findings have pretty much said "We'll see if the research proves out." The infectious disease docs there are even more conventional and unable to think out of the box. I had better luck asking a psychiatrist to have my daughter tested for possible infectious agents relating to her fatigue than I did the pediatric ID doc. If you find a doc the who seems to be more outside the box, by all means let me know.

 

[FernRhizome]

JimK:
Actually I called Dr. Silverman's office & asked if they had any docs seeing CFS patients and they gave me a list of four names, three of which had appointments available. While I believe you that they are probably on the conservative side, I think that they must be working with Silverman since it was his office that gave those names out. Since I'll be there anyway for other appts I figured it couldn't hurt. It's possible they will do XMRV testing since Silverman is right there at the CC. I'll let you know what I find out after my July appt! Thanks for responding. ~Fern

 

[Jimk]

Good luck with it

I'll be very interested to know if they are at all lined up with Silverman and the XMRV research.

 

[Advocate]

In a yahoo group there was a moderator with CFS who went to the Cleveland Clinic a few years ago and they told her she had mitochondrial dysfunction. Then she disappeared from the group, so I don't know if they helped her.

Also, there's a particular doctor at the Cleveland Clinic who is loved by parents of children with severe mitochondrial diseases. They really depend on him.

Surely you will get someone there who can help you.

Advocate

 

[FernRhizome]

That well loved mito doctor is probably my own mito doctor at Cleveland Clinic, and yes, he's terrific. He also gets the CFS/mito overlap. ~Fern

 

[starryeyes]

Hi Fern,

It's good to hear that the CC have a doctor who gets that our mito aren't working properly. I hope you have a good experience with the other doctor you see. I'm looking forward to hearing how it goes. It would be great if they test you for XMRV.

 

[SpecialK82]

Fern - Great question!

I too have wondered if Cleveland Clinic would be any friendlier to us after the XMRV news. Please let us know how your appt goes, I'm in Ohio and may follow your lead if this is a good experience for you. I'm very happy that Silverman could point you to some doctors, could you tell us their specialty? I wonder too what their treatment plan would be - would it all be based on XMVR??

Good Luck to you!

Kristina

 

[FernRhizome]

Ladybug that's interesting that Silverman e-mailed you back. I am wondering if he is testing CFS patients at CC. Wouldn't mind knowing before I get there. Might take your lead. ~Fern

 

[Alison]

(This is more of my rant at the clinic for misdiagnosing me. It isn't really useful info.)

If there is a doctor at the clinic who is up on CFS, then I have some issues with the five doctors I saw there who did not suggest I see him or her when I told them I thought I had CFS.

I grew up in Cleveland and my parents assumed I was getting the best care when I first got sick and they took me to the Cleveland Clinic. At first I was 18, so I went to the adolescent department. My doctor couldn't find anything wrong with me, said it was depression. Six months later when I still felt like I had mono even though I was on antidepressants, she said "It might be chronic fatigue syndrome" but I have no memory of this, I heard it from my mom months later. She said that it's like mono but it lasts for six months. We thought she meant it went away after six months, maybe she did, but she also might have meant that it takes six months to get the diagnosis, but then she never mentioned it again, even when I continued to be symptomatic. This was in 2002. I guess we got the impression from her that it wasn't something to take seroiusly.

In 2008 when I was in a really severe relapse and had to move back home my parents took me again. I saw a doctor at infections disease. He didn't know anything about CFS. At least he was honest though and said he believed I was sick but "medical science has failed you." and he was sorry. He referred me to a rheumatologist. The rheumatologist didn't find anything wrong with me despite lots of testing. (A year later my ANA started to be elevated but I guess it wasn't then) I also go referred to a nephrologist but he didn't find anything either. I asked to see a neurologist. They tested me for epilepsy, which I didn't have. When I asked for an MRI they treated me like I was delusional. He replied, "Would you like an MRI?" in the same way you would ask a kid if they wanted a lollypop. I never went back.

 

[FernRhizome]

Allison:
We can all understand what you went through, we have too, at small rural hospitals and at major clinics. When I called Silverman's office they gave me four doctor's names...not sure where those notes are. So four doctors are apparently "in the know" about CFS on some level or another. But until one or more of us see them, we won't know what kind of CFS knowledge they have. But clearly Silverman & the CC are now on the alert that they may want a pool of CFS patients. It will be interesting to see what happens there. Sorry about your awful experiences. We've all had plenty of them. I had a severe toxic reaction to shower curtain off gassing and ended up in autonomic collapse a few weeks ago at the local rural ER. The hospital notes I requested & read afterwards said I needed a psyciatric evaluation for a personality disorder. I am writing a rebuttal for my record and a complaint against the doctor. I am a respected patient of numerous nationally known physicians with a very clear diagnosis for dysatuonomna and mitochondrial disease. And I hadn't even used the words CFS anywhere. It was shocking. ~Fern

 

[Elisa]

Hi,

I have lived in a suburb of Cleveland almost all of my life 40+ yrs. I am well educated - post grad.

I have searched high and low at the Cleveland clinic for ANYONE that was willing to help me with my CFS.

They do have a graded exercise program that is part of their in-patient psychiatric dept. If you complain enough about weakness, fever or fatigue - that is were you will end up.

Following an MS workup, I was diagnosed by a rheumatologist at the CCF and was "treated" by him for years - he only offered low does antidepressants for sleep. That's it.

I see a cardiologist for the heart related issues - tilt testing etc. She recommends mainly compression stockings, beta blockers and lots of water and salt.

As far as testing, there is little done - maybe an ANA now and again - mine was severely elevated - no treatment offered, no ideas on cause.

By far their interest is psychiatric - still. I wish I had a dime for ever time I heard "exercise more" or "depression" or "anxiety" - that is the extent of their treatment program.

I would be happy to answer any questions any one has - I have a working knowledge of most of the CFS-related docs there.

Been to the infectious disease dept - three times - once the head doc said he wondered if I was causing my own fever - was I a nurse? (I'm not)

After seeing Dr Cheney, he mentioned an immunologist their that treats AIDS patient - saw him too - he recommended massage therapy. No joke.

I have never seen a mito specialist - and if there is a kind one there I would be willing to see him/her.

My next appointment is with a Neurologist there - after 14 yrs - a 3 yr fever - I developed severe swallowing problems. I am very sick and no one - no one doctor there was willing to work with me in any way to help me in the least.

I have to be honest - when I go there for CFS - there is a pathetic lack of knowledge - it was shocking to me for years - I also belived that I had seen the wrong doctor there - but the fact is they have a global belief that this illness is mental and that pervasive belief will not die quickly - regardless of XMRV.

If there is someone willing to treat CFS I will be very happy AND disapointed that after all these years no one referred me to him/her.

Elisa

 

[Elisa]

Hi,

I forgot to answer your initial question - regarding dys/autonomia doctors...

The autonomia doctor at the CCF is in the heart dept - specifically syncope clinic. Her name is Dr. Fenat Fouad. She is my doctor and she focuses on primarily (heart related autonomias) neurogenic/cardiogenic syncope and osteostatic tachycardia, POTS, etc and the like. She published a paper yrs ago with the rheumatologists at the clinic who "treat" CFS - around the time the Dr Peter Rowe study (at Georgetown Univ Med Ctr) came out about CFS being caused from POTS and related syndromes.

At nearby, University Hospitals is Dr. Thomas Chelimsky - also an expert in system-wide autonomic dysfunction - he is in the neurology department.

Here is the list of experts nationwide:

http://www.dinet.org/physicians.htm#United States

Both are the best in their fields - but not CFS experts by any means.

Can you share with me the name of the mito doctor at the CCF - as high doses of CoQ10 seem to help myself and family members. I would like to explore this avenue.

God Bless,

Elisa

 

[FernRhizome]

The great Cleveland Clinic mito doctor is Bruce Cohen. It can be a long wait to get an appointment! But he's wonderful. Though hard to get any follow up if you are from out of state like I am. ~Beth

 

[hvs]

Saw an ID doc at the Cleveland Clinic--EBV, HHV-6, and CMV positive lab results in hand--and it was a joke of an experience.
Dr. Peterson treated me with antivirals and now I'm well.
Thanks, Cleveland Clinic!!