ANY ONE BEEN TO FIBROMYALGIA & FATIGUE CENTERS ?

Discussion in 'Fibromyalgia Main Forum' started by jossee, Jun 22, 2009.

  1. jossee

    jossee New Member

    HI,
    I HAD FIBROMYALIA FOR OVER 11 YEARS NOW, AND BEEN VERY SICK, NOTHING IS WORKING ON ME ANYMORE. SO I HAD MADE A APPT. TO THE FIBROMYALGIA & FATIQUE CENTER IN PORTLAND, OREGON. SO I WAS WONDERING IF ANYONE BEEN TO THIS, AND HAS IT HELP YOU AT ALL ? ANY INFORMATION YOU MIGHT HAVE, PLEASE DO LET ME KNOW. THANKS SO MUCH.
  2. Empower

    Empower New Member

    I think several here have been, I haven't heard of much success
  3. isiselixir

    isiselixir New Member


    Ya just search FFCs, I know this has been a topic in the past. They seem to be very expensive. Some people have luck, most don't.
  4. munch1958

    munch1958 Member

    We made 7 trips to Detroit. The labs were very helpful but the doctor and I didn't agree on what my labs meant. She wouldn't RX growth hormone even tho my IGF-1 was low. She didn't want to prescribe a shot everyday. Her hang up not mine! I was willing to do anything to get better.

    She also wouldn't RX heparin for subthrombosis or hypercoagulation or excess fibrin. She didn't want to treat me for Lyme disease either. She wouldn't even agree that I had it.

    This was crazy because according to this website created by the creator of the FFC approach I was positive for Lyme 2 different ways. Yet the doc would not treat me so I moved on to a doc who would.

    http://www.hormoneandlongevitycenter.com/lymedisease/

    There is a running treatment history in my profile. It will tell you just about everything that they found that was important in my case. It will give you an idea of what tests they run too. If I had to do it all over again, I'd skip the IVs (only temporary and expensive relief) and their supplements (which are all available cheaper online.)

    Since then, I've taken my lab work to a board certified endocrinologist at a major teaching hospital in Chicago. He thought my lab results were very significant for multiple hormone deficiencies. He ran a stim test for HGH release (which I flunked) and prescribed HGH therapy for me. It has made a tremendous difference in the quality of my life.

    I've also been seeing a Lyme Literate MD in another state. I'm about 98% recovered and don't consider myself as having FM or CFS anymore!!!

    My doctors have said that once they found another diagnosis or reason for the fatigue then I don't have CFS or FM. At best, it's a "temporary or incomplete diagnosis". I'm not saying the pain isn't real -- or it doesn't exist -- it's the label that's not real. There is always always always a cause for this crud.

    The best guess that my doctors have as to why I have multiple hormone problems is chronic untreated infections of Candida, Borrelia (Lyme), Babesia, CPN, EBV, and Bartonella.

    I still have to be careful not to get too stressed out. My adrenals can't take any kind of stress. I do have an official diagnosis of Addison's disease now along with Adult growth hormone deficiency or AGHD and hypothryoidism. I also have to carry a vial of cortisol in my purse and a syringe at all times in case I need it.

    It's a battle to have to up my levels of cortisol when I'm stressed out or sick but I'd rather manage this than "learn to live with my symptoms." No one tells you to learn to live with cancer. Yet people with this diagnosis are told this every minute of every day. That's insanity!

    I feel like a new person. It is wonderful to not have to deal with the constant flu-like feeling and hurting from head to toe. I shed 30# and have kept it off too!