Mayo Clinic/other big institution work-up

Hi all,

None of the docs who I've seen seem to care much about probing deeper with blood/lab tests beyond the standard panels. And it's been a very long a winding road thru naturopaths, endo's, infections disease docs, etc. etc. I have high IgG's for CMV, EBV, and a few other viruses along with some minor hormone imbalances. I'm currently working with a functional med. chiropractor who's doing a good job, but none of my test results have been indicative enough to diagnose me with anything. So, every type of treatment/supplementation seems to just be a shot in the dark and my money's about to be depleted.

I was wondering if anyone's had a good experience with the Mayo Clinic, the Cleveland clinic, or any other major medical institution in their being evaluated comprehensively. I'm on the east coast in Virginia, so I was thinking John's Hopkins might be the logical place to start. However, there is little information on their respective websites about how they might test and treat ME/CFS. Might they accept patients who have evaded a diagnosis and run a comprehensive work-up, ideally utilizing a team of doctors? Does anyone have any guidance of how that process might work and/or recommendations of places to go? That might be too good to be true.

Thanks for taking the time to read this, and I appreciate any advice you all might have.
 

Who Me?

Well-Known Member
@Greg Zanchelli Here are my thoughts. If you want to get a giant workup, go to someone who knows how to treat ME/CFS in the first place and can interpret the labs. Although the places you mentioned are good hospitals, as far as I know none of them really treat ME/CFS.

Mayo is not a good place to go. Going back years they haven't known what to do with us. IMO that would be the last place I would go.

Cleveland Clinic I'm not sure of. I know they aren't known for ME/CFS. I lived there and the only guy who treated it was a rheumo. Same thing with Johns Hopkins. Good hospital but no one there who treats ME/CFS.

If you are able to travel there are a lot more places you could go to get a work up. Cheney and Lapp are in NC, Klimas in Miami, more than a few people in NY.

Someone on another forum put this together. It's really great. It's a roadmap on what to do.

https://sites.google.com/site/cfstestingandtreatmentroadmap/

Having a Functional Medical doc is really good. Some don't even have that much. For all of us it's hit and miss, trying to find something that works. Look at Lerner's stuff and Montoya. See what they are doing and us that as a guide.

If you're tired of throwing money down the drain, going to one of those hospitals you mentioned would just add to that.
 

JennyJenny

Well-Known Member
Hi all,
I was wondering if anyone's had a good experience with the Mayo Clinic, the Cleveland clinic, or any other major medical institution in their being evaluated comprehensively.
Thanks for taking the time to read this, and I appreciate any advice you all might have.
Doesn't Dr. Nancy Klimas at Nova South Eastern in Miami do workups? Or the Horne Bateman Center which is newly formed but I am not sure where they are? Google them and give them both a call.
 

Who Me?

Well-Known Member
I don't think klimas is taking new patients and I've heard her new person, forget her name is not good. I'm not sure about dr Rey

Also WPI Peterson or De Merlier in Nevada. Levine in New York. Not sure where Enlander is. Chia in Torrance CA. Kaufman or kogelnik. They see patients.

My point is don't go to a big hospital. They don't know squat about us.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Hi all,

None of the docs who I've seen seem to care much about probing deeper with blood/lab tests beyond the standard panels. And it's been a very long a winding road thru naturopaths, endo's, infections disease docs, etc. etc. I have high IgG's for CMV, EBV, and a few other viruses along with some minor hormone imbalances. I'm currently working with a functional med. chiropractor who's doing a good job, but none of my test results have been indicative enough to diagnose me with anything. So, every type of treatment/supplementation seems to just be a shot in the dark and my money's about to be depleted.

I was wondering if anyone's had a good experience with the Mayo Clinic, the Cleveland clinic, or any other major medical institution in their being evaluated comprehensively. I'm on the east coast in Virginia, so I was thinking John's Hopkins might be the logical place to start. However, there is little information on their respective websites about how they might test and treat ME/CFS. Might they accept patients who have evaded a diagnosis and run a comprehensive work-up, ideally utilizing a team of doctors? Does anyone have any guidance of how that process might work and/or recommendations of places to go? That might be too good to be true.

Thanks for taking the time to read this, and I appreciate any advice you all might have.
Mayo has a very mixed record. I'm sure they're doing better than before but I would be wary. You sound like you fit Dr. Peterson's mold of a typical ME/CFS patient. He's in Tahoe, though, and nothing, of course, is guaranteed - and everything costs money.. I haven't had the money to get tested and treated for decades really (lol).

Since you're on the East Coast you might try Sivieri in Baltimore I think it is - he get's good reviews - Levine in New York - gets pretty good reviews as well. I have a blog coming up on ME/CFS/FM doctors soon...maybe today :)
 

Who Me?

Well-Known Member
@Cort I don't know anyone who had a good outcome from Mayo. If they did take them seriously, the still never got any real treatment.
 

Forebearance

Well-Known Member
I agree with the people who have posted already. Going to a big, prestigious hospital can seem like the way to get the most comprehensive treatment, but it doesn't work out that way.
What really matters is the individual doctor who you will see.
There are so many good ME/CFS specialists on the east coast, as already noted. Personally if I were going to go get a complete work-up I would go to Gordon Medical in Santa Rosa, CA or I would go to Dr. Dale Guyer in Indianapolis. But you wouldn't have to travel so far when you have Dr. Cheney, Dr. Enlander, Dr. Levine and etc. so near you.

Thanks for the link to that great document, @Minx.
 

Merry

Well-Known Member
I have a blog coming up on ME/CFS/FM doctors soon...maybe today :)
Maybe you, or some other reader of this thread, can tell me what happened to the doctor directory at ProHealth. I emailed ProHealth to ask (what happened to it and is it ever coming back?) many weeks ago and didn't receive a response.
 
Thanks so much for your feedback and suggestions. I figured the patient community would be the best source for information, and you all confirmed my hunch.

@Minx that's a fantastic resource, and I've actually been using it a bit to steer my doctors up until this point, but it seems like I can only push them so much until the stress and uncertainty takes a toll.

I'll look into each one of the docs you all suggested and start a list to see who might be feasible for me. I'll let you know of what I can find out, too. Thank you!!

@Cort a blog post sounds like a fantastic idea - look forward to reading whenever you might have the time and energy to get to it. I've been referring to your site now for some time, and I've been meaning to say thank you for all you're doing and for this space you've created for people to feel open and to find even the slightest bit of reprieve. It's an inspiration.
 

Merida

Well-Known Member
@Greg Zanchelli
Don't know if you found a doc yet, and have been completely worked up. Hope you have made progress. Beyond blood work and a good MD to follow you, consider a traditionally trained osteopath ( expert in craniosacral), or acupuncturist ( I have had better results with Chinese doctors trained in China) or naturopath who specializes chronic fatigue. I keep 'one leg' with a traditional MD, and the other leg in the alternative world.

Do not under estimate the abilities that some of these alternative people have. I have had many strange and amazing experiences. ( from someone who lived by the ' scientific method' - clinical diagnostic microbiology) So finally, I may have found the very special person who can do some 'miracles' - a traditional osteopath / who also is a Qigong master - but isn't talking about that!! It might be helpful to tune up your own intuitive abilities - dowsing( how ? A Letter to Robin on Internet), drumming circle, shamanic/ Reiki training ( technique training).

These are the best of the best : The East West Academy of Healing Arts/ dr. Effie Chow, Institute of Noetic Sciences ( founded by Astronaut Edgar Mitchell), Chi Center - Master Mingtong Gu, a The Foundation for Shamanic Studies/ Dr. Michael Harner - anthropologist. I realize they are all on the West Coast but you may get a reference to your area. Also, Cay Randall- May ( medical intuitive) can give you valuable information about what is causing your symptoms. Check her site. She is the real deal.

It is time for all of us to get well.
 
@Merida Thanks so much for your response. I sort of have a three-pronged approach going currently. I have my "MD Squad," an acupuncturist, therapist, nutritionist alternative team, and probably most importantly, myself and my intuition, as you alluded to. Dan Neuffer's book "CFS Unravelled" sort of led me into the world of intuitive healing/meditative inquiry and self-reliance. This hasn't necessarily made any of my symptoms go away, but it allows ME to feel better about where I am and where I'm going. I've just begun to crack the spiritual world egg and it's so refreshing knowing there's so much to explore.

When I can, I'll definitely look into osteopathic medicine to see what it has to offer. I've read a few testimonials in the forums here in which people have had some great success with that. Dowsing seems intriguing as well, so I'll check into it!

Thanks again for your feedback, go well.

Greg
 

Merida

Well-Known Member
@Greg Zanchelli
My osteopath has told me that it takes about 1 month of treatment ( at once a month, occasionally twice a month with him) to get "well." This seems to be a slow, evolving process. Sometimes I backslide a bit before going forward. Sometimes strange synchronicities occur. Sometimes there are meaningful dreams. I am in a world that traditional science and religious teaching did not prepare me for.

If you are well enough to read, you might find "Spirit Talkers" by Dr. William Lyon ( a Prof. of Anthropology/Religion) very interesting. It is a carefully written/referenced book about Medicine powers of North American Indian Medicine men- using original accounts by early trappers, anthropologists, etc. This book expanded my appreciation for what is possible. Also excellent: Dr. Michael Harner - Cave and Cosmos, The Way of the Shaman. Dr. Harner is another anthropologist - Berkley Ph.D.

Onward.
 

Forum Tips

Support Our Work

DO IT MONTHLY

HEALTH RISING IS NOT A 501 (c) 3 NON-PROFIT

Shopping on Amazon.com For HR

Latest Resources

Top