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Old 05-19-2008, 12:55 PM   #1
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well-respected facility in US for CFS diagnosis?

Hi-

I'm a patient in Canada with CFS-like symptoms for the past 15 months. I have seen numerous doctors, but none have been particularly helpful to me, and I'm not convinced they've done enough testing to truly rule out every other possible cause of fatigue. I would like to undergo further testing in the US, because the public healthcare system in Canada is too conservative and too frugal to perform any but the most common diagnostic tests.

I'm wondering if there is a facility in the US that is particularly well-known and well-respected for making differential diagnoses of chronic-fatigue syndrome vs. other illnesses. I guess I'm thinking of something along the lines of the Mayo Clinic, eg. a large facility that is accustomed to dealing with international patients.

Any ideas would be greatly appreciated.

 
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Old 05-19-2008, 06:13 PM   #2
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Re: well-respected facility in US for CFS diagnosis?

Hi just wanted to say I wouldn't waste your time going to Mayo. I went and it was a big waste of time and money.

I see a doctor in Sacramento ca. He has helped me tremendously!

What test have you had run???

Any for Lyme disease such as a Western Blot? Thyroid? Epstein Barr, Cytomeglovirus? Mycoplasma pnumoniae? Chlamydia Pnumonaie??

There are many virus's and bacteria's that can be the culprit behind your problems. What symptoms do you have?

I wish you the best of luck finding what ales you.


 
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Old 05-19-2008, 09:36 PM   #3
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Re: well-respected facility in US for CFS diagnosis?

Hi jojo-
Thanks for getting back to me and sharing your experiences regarding the Mayo Clinic. My biggest symptoms are fatigue, which affects me daily, and is made worse by physical exertion, and muscle weakness. I have also had dizziness at times. I have had thyroid, EBV, and CMV tests, and pretty much all of the standard blood tests, but I have not had Lyme or any pneumoniae tests.

Can I ask you more specifically why though why the Mayo was a waste of time and money? Are they just not knowledgeable about CFS? And also, more specifically, what treatments have helped you?

Thanks again.

 
Old 05-19-2008, 10:17 PM   #4
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Re: well-respected facility in US for CFS diagnosis?

Mediumo, I would see an Infectious Disease Specialist that's part of a major university hospital. Try to contact one near New York City.

 
Old 05-20-2008, 12:10 PM   #5
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Re: well-respected facility in US for CFS diagnosis?

I have had infection under my scalp and skull since 1999. I started being treated for lyme. but not all the stuff I had. My doctor retired and I didn't know about his board at the time so was kind of grasping at straws. Mayo would not deal with it. They wanted me off antibiotics and then the infectious disease doctor asked me about these goose eggs (inflammation) on my head if I BUMPED MY HEAD? I had told her what was gong on with them that they would raise and cause a bunch of mental crap and so forth. At the time I went I had been going through it for 5 years.( the infection under my scalp)..NOW COME ON BUMP MY HEAD?!?!?!.....She told me she wouldn't see me until I was off all antibiotics and that I would haveto stay around the area for a month so she could evaluate me....

I had also ran into a couple of other people at the Hotel I was staying and they were also saying what a waste of their time....

they had me evaluated mentally and told me I had damaged my brain from the partying I did as a teenager and I had A.D.D., Demetia, Alsheirmers, and mental retradation....

Bascically they pass you around from "their" doctors within the Clinic....

Trust me I had none of the above. Now 3 years later and on more treatment my mind is working SOOOOOOO much better. The doctor I see has me on antivirals and tons of supplements. I am sitting under infared lights and killing the crap under my skin...I was just pulled off antibiotics about 2 months ago. I did 8 years of antibiotics and around 21/2 now of antivirals. Also have been doing plaquenil for the last 6 months....


I have been dealing with looking for answers since the way early 80's....

I am not saying you have Lyme. There was a couple of other people from Canada on the Lyme board. It is a better place to start, to find out where they went for information. Lyme is the fastest growing disease there is....Some say number one fastest growing others say Aids is...who knows but it is way up there.

I do feel the lyme doctors will check you for many of these things without having to beg for test.

What did the titers say for your Epstein Barr Virus and the other things you were tested for??? Your thyroid?? Remember NOT all test are accurate. There are many that give false negatives out there.

Wishing you lots of luck finding the answers. Most likely you have more than just one problem going on. Seems to me once our immune systems starts breaking down all these little critters LOVE to invade....yikes...

Jodie

 
Old 05-20-2008, 01:26 PM   #6
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Re: well-respected facility in US for CFS diagnosis?

p.s. I just wanted to throw in here that Chronic Fatique Diagnoises means....

You have some bacterial, viral, microbacterial ect ect...OR homornal problem..taxing you immune system and making you Chronically tired. SO each of us has to figure out what we have or a combination of problems going on. Get treatment for it and get your Immune system strenghtened. then things will go into dormancy, die off or what have you. There are reasons why your body is doing what it is doing.

good luck!

 
Old 05-20-2008, 08:20 PM   #7
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Re: well-respected facility in US for CFS diagnosis?

Thanks jojo and chronicallyfatigued for sharing your thoughts and experiences! I will look into contacting an Infectious Disease specialist, and also look into lyme disease, since I hadn't really considered that before.

 
Old 05-22-2008, 11:08 PM   #8
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Re: well-respected facility in US for CFS diagnosis?

That's not true in all cases though...'chronic fatigue' is a very common symptom of a lot of different illnesses. 'Chronic Fatigue Syndrome', rather, is a specific illness with a currently unknown origin. No virus or bacteria has ever been proven to be the cause of Chronic Fatigue Syndrome.

Thought I should clarify that for you.

Last edited by CFD 333; 05-22-2008 at 11:09 PM.

 
Old 05-23-2008, 05:59 AM   #9
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Re: well-respected facility in US for CFS diagnosis?

Your Welcome! There are reasons for everything. Hope you find your answers.


 
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