Fibroandfatigue?

Discussion in 'Fibromyalgia Main Forum' started by Natedagw821, Aug 10, 2006.

  1. Natedagw821

    Natedagw821 New Member

    Anyone ever hear of a website called www.fibroandfatigue.com ??They have offices nationwide. I'm just curious if anyone has had a successful story with them. I have an appointment to see them on sept 5. Any feedback u provide will be appreciated.
  2. hopeful4

    hopeful4 New Member

    Hi Nate,
    Yes, many on this board have gone there, myself included. If you search above for FFC or Fibro and Fatigue, you can read a lot of interesting threads about people's experiences.

    I just came back from an appointment today! The FFC is literally saving my life.

    Just briefly, I was sick for 5 years, diagnosed w/CFIDS. (Before that I was working a part-time school social worker position, in graduate school full-time, and completing internships, besides taking care of my family.) I went to many well-meaning doctors and naturopaths, but any improvements I made did not stick. I kept getting worse.

    On this board I learned of the Fibromyalgia and Fatigue Centers. I started at one in another state in March '05, until one opened much closer to where I live, near Seattle.

    They do extensive, comprehensive testing, and that is one of the things I thought was so important. I was given tests that no other doctor had. I learned that I had very low levels of all hormones, low thyroid, mycoplasma pneumoniae, echovirus, rock bottom NK cells, sky high RNase (indicating active infection).

    My first months of treatment included a lot of supplements, and some IV therapies. However, as the months went on, I did not improve, and got worse.

    When I switched to the center closer to me, the doctor there re-evaluated my condition and conferred with the former dr. She decided to re-test me for lyme disease. The original test done was not reliable enough. So using a much more reliable test, I was found positive for chronic lyme disease.

    This was a huge turn of events for me! I have never had a known tick bite, or a bullseye rash. I was stunned. I've learned a lot since that time about the myths of lyme disease.

    Now, I've been treating for it about 8 months, and am just starting to notice improvements. It's a long, bumpy road, but, at least there is treatment for it, and hope. My NK cells are up, my mycoplasma and echovirus infections are gone, my thyroid is improved. I cannot take other hormones so those are out.

    One thing I will say about the FFC is that many of the doctors are great, and some are not so great. So just be aware of that. You sound like a smart guy, so use your head to determine if the doctor is the right one for you.

    Just don't ever give up. Keep on trying.
    Best wishes,
    Hopeful4
    [This Message was Edited on 08/10/2006]
  3. lightnerbride

    lightnerbride New Member

    I am desperate for help and curious in what you are taking about with the Fibro and Fatigue Clinic. I live about an hour north of Seattle so would kill for information. I currently go to my PCP and Harborview Medical Centers Chronic Fatigue Clinic but I'm not getting much help. Hope to hear back on details.
    A