I saw a doctor at Johns Hopkins who diagnosed me. I found it helpful, simply because I had gone for about 10 years with no diagnosis. In my case, he just did the diagnosis and sent a letter about treatment to my PCP. Over the years, my PCP's haven't done much to help me. I wish I lived closer to Johns Hopkins so that someone there could take over my care. So, yeah, I would say a CFS specialist is worth it. At least, in my case it was helpful. I'm so sorry you are struggling. I am too. It's so hard to get good care. Many blessings.

Hello Bluebonnet08,
I have seen three naturopathic doctors over the past twenty
years. They all say they specialize in auto immune illnesses and
chronic fatigue. I would consider them 'specialists'. Each one
has helped me at that time. The doctor I have now has helped
me the most. I don't know what part of the country you live in.
Also, I don't know how easy they are to find. But. Yes. If
you have access to one whom you believe is good, I would say
yes' for sure go to see one.
Also, the ones I've gone to do not take medical insurance
so that's also a consideration. My general feeling is that we need
to be our own advocates. If you feel they're not helping you,
you can always decline treatment or leave. Sending you
well wishes that this brings you some healthful results..

Agreed about naturopaths.
I was lucky to be diagnosed by a forward thinking D.O. in 1993 when this was almost unknown and called post viral fatigue syndrome. In the years since she moved her practice I looked for docs who knew more. most of my pcps believed her diagnosis but just on face value. I found an ND and she diagnosed me fresh from the start without my even saying I had a prior diagnosis. For whatever reason this really helped my mental state re: this illness. She was also the only practitioner who gave me meds that actually help.

I've searched high and low and finally found a neuropsychiatrist that understands CFS and Fibromyalgia. He has been a godsend for me. He's been willing to treat me like a human being, not a slacker or a hypochondriac. He's tried a few things and we finally made a wee bit of progress.

I'd say it's definitely worth getting a specialist--but talk to them in advance. Before setting an appt, ask to discuss their practice/treatment of CFS. What is their success rate with getting CFS patients more mobile, etc? What aspects of the disease do they treat, if not all? It's better than wasting your time with a doc that doesn't really know anything.

Good luck!

Unfortunately your basic M.D. just isn't educated about CFS. They just don't have a clue!! Some of the newer, younger ones, fresh out of school, may have "heard of it" but have little to NO experience with patients.

I was diagnosed by a D.O. who tended to be more Naturopathic. He was awesome. I am now treated by my own D.O. that I actually used to work for. He didn't recognize the disease when I was working for him, right under his nose, but once diagnosed, I think he realized what had been going wrong with me and started to get himself familiar with CFS/ME. Now he has at least 13 patients with this illness and keeps up with the latest news as best he can. He thanks me for helping him! Isn't that crazy? Sheesh!

Anyway, a CFS "specialist" is hard to find. I did find a "Wellness Center" in Pennsylvania, where i was treated by a CFS specialist for about two years. He was wonderful, very thorough, and is the one who found out about my food sensitivities. That was something HUGE, making me really sicker than anything else, yet no one had thought about it.

I would highly recommend a D.O. OR a Naturopath or Homeopathic doctor. These people just seem to know more, feel more, care more...and keep us away from harmful drugs.

A good Rheumatologist can be a great help as well.

Just know that if your doctor listens to you, and sends you out of his office with a diagnosis of Depression, and a script for Antidepressants, you're in the wrong office. I wish you the best with this. Sometimes it's hit or miss, and usually, WE know a lot more about the illness than our "specialist"!!

Yes. I saw a chronic fatigue specialist in Denver. He put me on Meyer's cocktail VIa. I still get them today. I found a doctor in Texas that will amongst them to me as well. I also get Amp 5 and vit B shots. They are expensive but very helpful.

SunValleyGirl.. what types of improvements did you see with the IVs?

A lot of improvement. I was homebound for a year. I still have to get about 6 a year but they really helped. Googke Meyer's cocktail VIa. I found a clinic about 100 miles from me that gives them.

Who is the doctor in Texas or what city? I'm at n search of a good CFS Doctor. Ty