i was referred once to infectious disease dr for chronic fatigue symptoms.After they ruled alot of things out,they basically said chronic fatigue and didnt see me again.so thats not helpful.But maybe they are not all like that.
I think it is an infectious disease dr that might treat chronic fatigue syndrome.

A rhuematologist is good at finding or ruling out any auto-immune diseases that can cause chronic fatigue.so that would be a good dr to see too.

Thanks, Autumn!
I have already been diagnosed by my PCP, so what I really need is someone to take on my ongoing care. Someone who knows what is and is not realistic for someone with CFS.

jc, I'm in the same boat...my pcp doesn't quite know what to do...I did see an infectious disease doctor and had lots of blood work...I suppose I need a rheumatologist, too. Would you post an update when you find appropriate care?

x

Sure thing, spacepony! I think I'm going to start calling rheumies today and see who sounds good. They are the only ones that show up on my lists, so...

It's hard to find a doctor for ongoing care. There are just a handful of specialists throughout the US. Depending on where you live, you could be in the same state as one of them.

So many of the doctors I've been to in the last 8 years tell me they know nothing about CFS and do not plan to learn about it.

If you got a CFS diagnosis from your PCP, that is really something.

I don't know if I'd say I got the diagnosis from her...so much as I told her "Well, we knwo the fibro. Now this is going on. CFS you think?" She's all "Yep, sure, that sounds right."

Very scientific process. :)
I think for now I'm going to stick to my neuro psych and hope that things progress quickly. If he's not inclined toward what I need at our next appointment, then I think I'll ask him for his recommendation. He seems to truly understand CFS, so he should know if there's someone better for primary care.

I tried calling Duke hospital last week and they have specialists, but the earliest new patient appt I could get would be October. I do NOT intend to wait that long. Ugh!

Hi JCPMoore,
I am seeing a naturopathic doctor who is in a practice with
other doctors who treat autoimmune diseases. They do not take
insurance and some people are not able to afford the visits.
My PCP doctor knew nothing about chronic fatigue. The
only doctors I've seen who treat it are 'alternative doctors'. I've
never been to a rheumatologist or an infectious disease doctor.
Having said that, I find that even among so called 'alternative
doctors' that some are better than others.
You may wish to visit www.endfatigue.com which is the
website of Dr. Jacob Teitelbaum. Under the heading of
CFS @ FM he has a 'find a practitioner' heading. I believe he
has one listed in South Carolina. He also lists support groups.
I didn't check your state for that. I found a lot of useful information
from reading his book. Also there appears to be a lot of
information on his website. ( He does have several clinics and
again, I know they're costly.) I was fortunate to find a
support group in northern CA and gain a lot of help from the
people in the group.
In my experience, mainstream doctors don't know much
about this. So that's why it's hard to give out recommendations.
I feel, if you keep looking, you will find someone in your area
though you may have to travel to see that person.
Good wishes with this.

Thanks, Rosa! I will definitely check him out.

I see a neurologist, although most neurologists are not up on CFS. By far, the biggest help has been a concierge doctor. This is a doctor who does not take insurance (I pay $225/mo). She sees me once a month for 1 hour or more. We address my many CFS symptoms and other ailments. She has been instrumental in getting me on a different eating regime and I have lost 50lb. She referred me to physical therapy at a wonderful place. They respect my ever-changing limits and have helped me increase muscle strength/tone without triggering a relapse. She pays very detailed attention to my medications. For example, changed my asthma inhaler to one that works a little better, helping my low oxygen. It's a lot of money (I am pinched) but so incredibly helpful. Even wonderful to have a doctor sit down w me and LISTEN and believe me.

Shortly after I was diagnosed (by a rhuematologist) 13 years ago, I saw a neuro-psychiatrist on the advice of my PCP; he turned out to be a godsend.

He put me on Concerta to elevate my energy/focus throughout the day. He also re-calibrated my dosages for other meds so that I could handle them all. More than a dozen years later, I'm still taking the Concerta because it allows me to function well enough to work and do the minimum to get through most days. I accepted that CFS will be with me always, so I am happy to find anything that helps me manage it.

Meanwhile, the discussion rages on about the pathology/origins of CFS/ME/SEID (All these lame abbreviations! Sheesh!), but I have always seen ours as essentially a brain-based disease -- especially when you tally up our symptoms: fatigue, insomnia, fibromyalgia, sensitivity to noise/odor, word finding, memory, mood. All our regulated by our brains.

Even if it turns out that CFS is triggered by a retro-virus, "leaky gut," gene mutation, etc., all roads seem to lead back to our cerebral cortex. :0/

Also: I have not found a rheumatologist yet who had more than a passing interest in CFS. Not sure why.

I work for one of the largest and most respected research hospitals in the world, and I have only found one CFS specialist in our system -- and he only treats children! When I asked him why, he gave me a non-answer ("that's our market") and said he knew of no other specialists within 300 miles.

Frustrating, isn't it?

I think it is not the 'type' of doctor, but rather the individual. If the individual has an interest in CFS, then they can be of help.

Linda, your concierge doc sounds fantastic. How did you lose 50 pounds? I am going to try to find a concierge doc in California, did you ask questions like "do you know anything about CFS?"

Thanks!

Thanks for sharing jebias! It's sounding more and more like my neuro psychiatrist is the one to keep. I will just have to wait and see if he can help.