Recent visit to Cleveland Clinic

[Unacceptable86]

After dealing with CFS for almost 2 years, I finally broke down and made the trip to the Cleveland Clinic. I figured since they were at the forefront of this new XMRV study, they would be able shed some light and actually help me. To make a long story short I saw a Rheumatologist, and she sent me away with a sleep medication (I've already been on one for awhile and it obviously doesn't help relieve any of my symptoms). This to me is UNACCEPTABLE. The doctor didn't even mention XMRV or any type of infection, etc...which to me all along this illness feels like I have a "bug" I can't get rid of, not a sleeping problem. (as all of you suffering already know). This doctor was even listed on their website as one who treats Chronic Fatigue Syndrome, so needless to say I was very suprised as to what she did for me.

It does not make sense to me. Does anyone else know of a particular doctor at the Cleveland Clinic that is more open to other treatment options? Or would atleast be up to date on the new XMRV research for CFS? One that I may actually get an appointment with?

I feel like I went to a premier health facility and they're telling me to "sleep it off"...unbelievable.

 

[hvs]

Any CFS patient will experience the same at Cleveland Clinic, Mayo, etc.. Sorry.
Dr. Silverman at the CCF is a professor, a researcher. He does not see patients and the rheumatology and ID folks at the Clinic don't know the first thing about xmrv.
You're early in your illness, so there's good hope for you, but I'm afraid that you're going to have to get on Klimas's or Peterson's or Levine's waiting list. You might try Lerner in Detroit, too.
Best of luck.

 

[alice1]

I'm sure you were very dissappointed but don't give up and put yourself on the list of docs that hvs suggested.
Hang in.

 

[CBS]

HVS is right on target here. I went to the CCF in August, not for CFS but to get an opinion on the cyst that is causing my diabetes insipidus. The endo I saw was a complete idiot. He saw that I had been to the Mayo Clinic in Rochester three years ago (Neuroradiologist noted cyst, Infectious disease said it looked like chronic infection but couldn't figure out anything more than that, endo was clueless) and immediately assumed all of the medical evidence and events since then meant nothing. He spent the next 30 minutes back tracking on every ridiculous thing he said as he walked in the door (never did ask why I was there): "You don't have DI" (I asked if he had even read my labs - no - hmmmm, look at that. Maybe you do.), you don't have any abnormalities in your mid brain (CCF neurologist the next morning - "nice cyst"), lastly "I can't help you." I guess one out of three was good enough for him.

I agree completely with the idea of trying to get on a waiting list for someone like Klimas (just opened a new clinic), Peterson, Montoya (I know he was focused on the HHV-6 thing but that's not all he's focused on and I can personally vouch for him - he's especially good for me as I have issues in his sub-specialty - toxoplasmosis), or even Lucinda Bateman in SLC, Utah.

 

[jessjb79]

I've been going mostly to cleveland clinic doctors since I got sick almost 4 years ago. I've certainly been unimpressed and have wasted way too much money at the clinic. My last couple experiences there were with doctors who acknowledged my autonomic nervous system issues and low grade fever, etc. but would then just say it's 'stress'. They took my money and put no effort or thought into helping me. It was dissappointing and frustrating to say the least. I thought maybe now with some new information and they might be better. Guess not? I did see one rheumatologist there I like, Dr. Wilke - who is very interested in CFS and seems to like to actually get to the bottom of problems. You could try him. He listened and really tried. The thing is when I saw him, he basically couldn't offer any real treatment options or even causes for this four year flu of mine. But he at least acknowledged there was a legitimate problem. My expectations are so low for doctors that just this simple validation impresses me. I'm beginning to think no doctor can help until the science is there for them.

 

[_Kim_]

Welcome to both Unacceptable86 and Jessjb79.

I'm Kim65 <--- if those are birth years we're all talking about

That's awful that the Cleveland Clinic has been such a disappointment for CFS patients.

I know NY is not exactly convenient to Cleveland, but FYI Dr. Susan Levine is accepting new patients. I've had very good experiences with her.

 

[anne]

CCF, like Mayo Clinic, is ridiculous on CFS. Until a couple of months ago their website on CFS basically came out and said the illness was psychological. There's a cardiologist, Blair Grubb, in Toledo that is supposed to be good at orthostatic stuff.

 

[Terri]

On Wednesday of this week I went to a new local GP in hopes of just finding a local doc as a base and her attitude towards me was so demeaning and condescending and disbelieving that I spent the rest of the day in bed feeling depressed and hopeless. I can't imagine how discouraged I would feel if I traveled 4 hours to a famed clinic and got similar results.

 

[alice1]

Don't let their ignorance get you down.There is clearly so much in science they don't know and then they get defensive about it.I've had 2 docs tell me straight out they're still learning.It didn't help but they were honest and I felt ackowledged.
Keep the search on.Hang in.

 

[Unacceptable86]

Thanks everyone. I will keep all of your advice and doctors in mind. The biggest obstacle is finding a doctor that is fairly close (Cleveland Clinic is about 6 hours from me). I think my best bet at this point is to try and find a GP that is in my area of Lexington, KY. Finding someone who listens and is willing to try other treatment options would be great. I was seeing a doctor at the Fibromyalgia and Fatigue Centers who was a big help, even though I reallly hadn't felt any better when I stopped seeing him(only there for 4 months). That place just got too expensive by not being covered by insurance, I was forced to look at other options (i.e. Cleveland Clinic).

Stay strong everyone.