Which doctor, preferably in the West?

[WillowJ]

I very much need to see a doctor who actually know something about this disease. I have had very little testing except to check for top expected diseases (MS, Lupus, and the like).

I need:

• a thorough cardiac evaluation
• testing for pathogens (Lyme, EBV, HHV, enterovirus, etc. ... and XMRV after the science is more settled)
• differential diagnosis between ME and some other (non-top-expected) disease(s)
• assessment for dysautonomia
• neurological assessment and sorting out what symptoms are from migraine and which from ME
• assessment for comparatively mild OI (as compared to many of you)
• discussion for whether a sleep study might help
• discussion for whether a gut study might help
• preferably, a brain hypoperfusion study
• it would be kind of nice to have someone read my MRI's to look for ME lesions, but I'm not sure this qualifies as a need

I'd prefer to stay in the far West because of proximity, but am not entirely ruling out going to Klimas, Komaroff, Lerner, or someone far away like that, maybe even KDM.

I'm leaning towards Peterson partly because it's cheap to fly to Reno and partly because I've just liked what I've read about him, but I want to consider all my options.

Bateman is in Utah? and Chia in California? Who else is in the West?

And what does everyone recommend? Who would be likely to be of most help? Is there going to be a big difference in expense between the different doctors? Expense might be a problem but if I have to wait a year, it will be a bigger problem then.

 

[paclabman]

Is Seattle area a possibility for your search?

 

[WillowJ]

yes, that would be workable. Do you have a competent doctor in your area?

 

[paclabman]

I think my Dr. would be a good place to start. Sound's like you need someone who is willing to look at the "big picture". I go to Dr. Marti in Bellevue, Wa. Her primary interest is in ME/CFS and Fibro. She is also experienced with hormone balancing and has learned to look for various infections.

With me, she looked at all kinds of hormones and nutritional stuff and also tested for infections and heavy metals. After years of making no progress with fatigue, brain fog, and PEM, she found my Lyme and Cpn infections. I've had referrals to a neurologist (who sent me to a neuropsychologist who found some cognitive issues), endocrinologist, sleep neurologist for my sleep apnea.

Kind of a unique background. For example, if you've had a tick bite, no only is Lyme a possibility, but there are a number of other tick borne illnesses you could also get. Some of these need to be treated first or the Lyme treatment will not be effective. A good place to start.

I don't have personal experience with him and much of his practice is now Lyme related, but you might also consider Dr. Ross in W. Seattle.

Both Dr. have web sites - just Google.

We've treated my infections and I'm so much better off now. It does appear that that I had the infections so long that they have disrupted some of my systems. It's looking like I'll be left with some ME/CFS stuff (just did Pac. Fatigue Lab tests which showed my PEM - moderate to severe) and a little Fibro stuff (half the tender pts. and some pain issues).

 

[WillowJ]

thanks, paclabman, that looks helpful!

also thanks to someone who sent me some very helpful PM's

am open to additional input as well

 

[WillowJ]

paclabman, I'm glad you've gotten some treatments which are helping you. It's too bad that treating infections couldn't clear everything up, but nice that you got some good improvement.

 

[Quicksand]

Hi there. Did you get your diagnosis? I am searching for a good faculty to do work up and provide diagnosis. After seven+ years chasing this locally, I am ready to travel anywhere in the US. My PCP is driving me nuts and wearing me out with pointless visits. She spent two appts explaining that i most likely have CFS. When I called to see if she had listed it as a diagnosis in my chart, the answer was a succinct 'no.' Grrr. I am thinking of going to cleveland clinic, but some of the posts I've read don't sound encouraging. Do you know of other clinics that offer anteam-oriented whole body approach? My condition has deteriorated rapidly. Starting to feel paralyzed and unable to perform what little work I managed. Any suggestions about where to go for diagnosis would be greatly appreciated.

 

[WillowJ]

Quicksand, yes, I've been diagnosed, but I recommend neither the course that led to my diagnosis nor the doctor who diagnosed me (he is nice, and competent enough to diagnose me, but does not know how to treat the Disease).

It took 9 years for me to get a diagnosis. The first three I was completely ignored (except in naturopathy, which offered some support but no diagnosis), then my ANA was found and I gained Real Patient Status, but that more or less dissipated when I failed to develop Lupus or RA. Various tests and doctors off and on over the course of the next six years brought no particular answers. By the time I saw the doctor that diagnosed me, other major diagnoses had already been ruled out and all he had to do was know the Fukuda definition and ask me some questions.

One of the faster placed you'd be able to get in would be Nancy Klimas' clinic in Miami, Florida. Some other places with lots of experience are listed below and at the link.

A question for you: have you had testing to rule out other conditions like MS, Lupus, etc?

If you're not getting on with your PCP, I'd suggest changing. Not having CFS in your chart is actually a really good thing (unless you're applying for disability support). The CFS label is basically an albatross. I'd suggest you not mention it to a new doctor unless they're a CFS specialist or unless you are convinced you have ME (myalgic encephalomyelitis, the disease the first CFS name and definition was made for) and you can bring information to the doctor about ME/CFS (let us know if you need help with that).

Unless you already know you have ME, I would concentrate on getting other diseases tested for. You can do this either with a competent regular doctor or with a CFS specialist.

Here are some CFS specialists:

Dr. Nancy Klimas, www.cfsclinic.com
Dr. Lucinda Bateman, www.fcclinic.com/
Dr. A. Martin Lerner, www.treatmentcenterforcfs.com
Dr. Daniel Peterson, Sierra Internal Medicine (Incline Village, Nevada)
Whittemore Peterson Institute, www.wpinstitute.org/ (not yet taking patients, but might have advice)
Dr. David Bell, www.davidsbell.com

 

[WillowJ]

To answer the question about whether you have ME/CFS, in combination with ruling out other things, carefully read the Canadian Clinical Consensus guidelines. Links to those can be found here:
http://forums.aboutmecfs.org/showthread.php?1075-ME-CFS-diagnostic-and-treatment-guidelines

 

[SOC]

Hi there. Did you get your diagnosis? I am searching for a good faculty to do work up and provide diagnosis. After seven+ years chasing this locally, I am ready to travel anywhere in the US. My PCP is driving me nuts and wearing me out with pointless visits. She spent two appts explaining that i most likely have CFS. When I called to see if she had listed it as a diagnosis in my chart, the answer was a succinct 'no.' Grrr. I am thinking of going to cleveland clinic, but some of the posts I've read don't sound encouraging. Do you know of other clinics that offer anteam-oriented whole body approach? My condition has deteriorated rapidly. Starting to feel paralyzed and unable to perform what little work I managed. Any suggestions about where to go for diagnosis would be greatly appreciated.

Willow gave you the top docs list, so I'll just add that if you're considering Cleveland Clinic because of its location, you might try Dr Lerner instead. He's in Detroit. He does test for lots of infections and can give you a solid diagnosis.