which physician to see

[uni]

Sorry to post another one of these threads. I'm wondering which physician should I try to see given my situation.

I am not formally diagnosed, but believe I have CFS - due to having symptoms for the last 2.5 years. My main symptoms are post-exertional malaise (significant fatigue and brain fog after exercise, mental activity also causes brain fog), cognitive dysfunction (poor memory, cognition, response time), general fatigue, muscle soreness/weakness, poor and unrefreshing sleep, hypoglycemia, and gut issues (dysbiosis/irritable bowel syndrome). I don't have joint pain/sore throat/pain in other areas of my body.

I tried hydrocortisone for a couple of months, and while it was helpful, it didn't make me feel normal and is associated with adrenal suppression. I am currently trialing sertraline since I've read several anecdotal reports of SSRIs helping certain patients with CFS (although I know many people don't respond to it). In my experience so far, anything anti-inflammatory helps my symptoms.

I have never been bed bound or house bound, but I am unable to hold down a job or attend post graduate schooling due to my symptoms (graduate college a year ago). I'd put my functionality at 60-70%. I can go on light walks/do mild exercise without significant problems. My symptoms came on gradually after catching a virus which I had a hard time recovering from.

I've had most other conditions ruled out so far, but have not had extensive immune testing. Given my situation, which doctor would be best to seek out? Klimas, Bateman (long waiting list), Levine, Enlander? BTW, I have Blue Cross insurance, annual deductible of $3500. CFS doctors are likely out of network in which case reimbursement after deductible is still pretty low.

I live in Northern California.

Thanks

 

[Kati]

hi Uni, it is a great time to seek out expert advice atthis stage of disease. To help you choose, take a look at how these physicians are treating, and their approach to the illness. It is certainly very important to rule out other diseases at this time.

I can only speak for the one I have seen, Dr Klimas has been very thorough.

One suggestion, if you didn't hear them before, seek out videos ofthe, speaking. Sometimes it helps with the decision. Good luck!

 

[SOC]

There are some excellent ME/CFS doctors on your side of the country, so it might be advantageous to look into one of those. I can think of a few, but maybe our Westerners can chime in here. There's Dr Montoya, Dr Kogelnik (sp?), Dr Petersen....

You might also want to read posts in this, the ME/CFS Doctors forum.

 

[IreneF]

I've seen Dr. Montoya at Stanford and Dr. Kogelnik in Mtn. View and I would recommend either of them. I don't know if Montoya is taking new pts., and if he is there may be a long waiting list. Kogelnik is more agressive with treatment but requires you to pay out of pocket.

 

[uni]

Hi Kati,

How much have you had to pay for appointments, labs, and treatment with Klimas? Does your insurance cover any of it?

The first appointment is pretty expensive - $900.

 

[SOC]

Hi Kati,

How much have you had to pay for appointments, labs, and treatment with Klimas? Does your insurance cover any of it?

The first appointment is pretty expensive - $900.

Actually, that's relatively cheap for a specialist.

 

[Sushi]

Actually, that's relatively cheap for a specialist.

True, pretty cheap. What does the $900 cover? Any of the in-clinic initial testing? If so, that makes it even cheaper. Unfortunately, "cheap" is relative here! $900 wouldn't be cheap to see a GP, but then you might actually get something for your money by seeing a specialist.

Best,
Sushi