Fibro and Fatigue Clinic

Discussion in 'Fibromyalgia Main Forum' started by JCD, May 5, 2009.

  1. JCD

    JCD New Member

    It's been quite a while since I've been on this board, since then I've been to the F&F clinic in Pittsburgh and Cleveland, OH and moved to NC. I found my visit to both clinics absolutely appaling! I spent thousands out of my savings to get help with this clinic and ended up back to where I was before with my rheumatologist!! I'm still burned over my exerience with the clinic. I think it's a total rip off. Maybe some were helped but to end up back where you started was a major disappointment. The doctor in Cleveland (Stringer) had no clue what to do, she sat there literally reading from Dr. Tietlebaum's (SP) book in front of me. She has since left the clinic and a third doctor is there. I also recently discovered that Dr. Perotti (sp) who was in Pittsburgh had his medical license taken away while at the clinic.

    Any thoughts? After spending the money that I did, I no longer trust any of these places anymore. Dr. Lapp is in Charlotte (less than 2 hours from me) and I don't even trust that clinic to help me.
  2. rockgor

    rockgor Well-Known Member

    had such a bad experience. I can't remember ever reading a good report from someone
    who had been to these clinics.

    I recall a few people who said they were just starting w/ an F&F clinic, but don't recall that
    they ever came back and made a report.

    I hope others will benefit from you experience.

  3. munch1958

    munch1958 Member

    I didn't even get the full protocol -- just FFC lite version -- because of doctor ignorance. I had many positive bands on the Quest and Igenex WB but was told I didn't have Lyme disease. I've had multiple tick bites and EM rashes so I think my results were accurate. It's too bad I couldn't get the treatment that I needed to recover from the Detroit FFC.

    The doc also didn't think I needed growth hormone. My IGF-1 was borderline low. I moved on to a board certified endocrinologist who conducted a stim test. This was NEVER mentioned at the FFC. I flunked the test which means my body is not capable of making growth hormone anymore. I'm now on daily shots with great results. Instead of HGH they kept suggesting more supplements and IVs which did NOTHING.

    My FFC testing also showed hypercoagulation. I was not treated for this at FFC either. I did complete 10.5 months of heparin therapy with a LLMD or Lyme literate doc. I am now 95% better. No more Fibro or chronic fatigue. No more TMJ. No more migraines. No more costochondritis (chest pain). No more GERD, IBS, etc.
  4. rachel76

    rachel76 New Member

    Thanks for writing about your experience.
    I have heard of one woman who went to the Las Vegas clinic and said it helped her a lot. I live outside the the US so going to FFC is a huge thing for me, I kept wondering if it could help. Then I read the FFC's "international program" on their website and it put me off . It said things like they can arrange "tours" for people who come as if it was a holiday, not a desperate search for treatment and offered "counselling" as part of their program. Still, there's a sliver of a doubt there even if you don't think it would help.
    Thanks for writing. I hope others will say something about their time there.