Do you recommend the FFC clinics?

Discussion in 'Fibromyalgia Main Forum' started by namow, Mar 25, 2006.

  1. namow

    namow New Member

    I am considering going to one of the FFC clinics but I would like to know if you really saw a difference in your ilness.How long did it take to notice changes.
    Also, about how much did you have to spend there. Does insurance cover the treatments?
    Thank you
    Namow
  2. LittleBluestem

    LittleBluestem New Member

    If you do a search on FFC, Fibromyalgia and Fatigue Clinic, and version thereof, you should find a lot of information.
  3. mollystwin

    mollystwin New Member

    Hello,
    After much consideration, I have an appointment with FFC on May 3. My twin sister twinofdar is going and is getting better. They have free informational seminars every month that explain everything. I went with my sister. One thing I can tell you is that it sure is nice having doctors understand what you are going through and not treat you like a hypochondriac like by PCP does. My insurance is HMO and does not cover anything, but my sister does have coverage with her insurance for some stuff. Call your ins company to find out. I hestitated for two months because of the cost, but finally decided there are no other options. So I am going to go. I don't know exactly what the cost will be, but I'm thinking over 5 thousand due to I have no insurance. Cost will vary depending on test results and what supplements and rx I will need.
    Good Luck!
    Dar
  4. spiritsky

    spiritsky Member

    See my posting titled "Progress Notes 4 months after starting at FFC". It describes everthing I've been doing so far.

    FFC has helped me quite a bit...The link to the posting is below.

    http://www.immunesupport.com/chat/forums/message.cfm?id=781262&B=FM#781262


    good luck...
  5. kel78

    kel78 Member

    I had an initial visit to the Cleveland FFC in April 2005 and was pleased that the extensive lab testing they did validated what I've been theorizing - chiefly, that my immune system is on hyper-drive.

    I was ultimately disappointed, however, for a couple of reasons. Firstly, because I was led to believe that my insurance would most likely cover the cost of the lab work. Well, it didn't. My HMO (in upstate New York) denied coverage because the lab used was out of the area. It was an enormous financial blow to suddenly be saddled with around $7,000 of lab fees. The $1,500 (or more) that I already had to shell out for the visit to the FFC and the supplements was already more than I could afford. I've learned my lesson here and will NEVER agree to have any medical work done without checking with the insurance company FIRST.

    At my first visit, they also kind of strong-armed me into having an IV treatment, claiming it was nothing but nutritional supplements. So, I took the treatment. Later, as the day went on and I drove the 4 hours home, I began to experience increasing chest pain, which got so bad by evening that I almost took myself to emergency. Upon contacting the FFC the next day about this, I was told there was a drug in the IV. I was livid! If I'd known that beforehand, I never would've agreed to the IV because one of my most bothersome symptoms over the past several years has been the appearance of intolerable drug reactions.

    Even more disappointing, however, was the attitude I encountered from Dr. J. at the Cleveland Clinic when I was unable to continue use of drugs and supplements she prescribed because they had intolerable effects on me (mostly heart palpitations and electric- or seizure-like sensations in my head and body. For the past few years, I've had these kinds of reactions to many substances that never used to bother me, and I have been wishing to find a doctor who would make an attempt to find out why. From what I'd read about the FFC, I thought they might be the ones to do it. But when I told Dr. J. what was happening, she gave me the same kind of short-sighted response I've gotten from all my other doctors -- implying, basically, that it's somehow my fault and/or it's not working because I'm not doing what I'm supposed to be doing. Well, sorry, but I'm not going to keep putting something into my body that makes it impossible to function or sleep and makes me feel like my brain is going to seize. And I have no trust in a doctor who would want me to do so.

    The FFC literature claims they listen to each individual's symptoms and tailor treatment according to them, but that was NOT my experience. Dr. J. did not accept my drug reactions and try to find out what was causing them; she blamed me for the fact that she was unable to help me. That was extremely unfair and egotistical. Not what I want from a doctor.

    Mary

  6. rinaldo

    rinaldo New Member

    Hi I am currently going to the ffc in pgh. They put me on alot of vitamins. Antil viral and antilfungal meds and throid med. Im feeling so bloated gassy and gaining weight fast. Did you have any of these side effects. Lisa
  7. kel78

    kel78 Member

    Thanks for the support, Molly. It is so much appreciated!

    I had problems with the T3, too, but was already on a very low dose. I also was only taking a small fraction of the anti-viral Dr. J. prescribed and couldn't handle it. The thing that bothers me so much is that every time I have a bad reaction to something, the doctor acts like it's the first time I've had that happen and all I have to do is lower the dosage and I'll be fine. But, that's not the case. I've willingly tried an endless string of drugs (and even supplements) and changed dosages to try to find something that works and have been left unable to function for at least a day or two (sometimes longer) as a result. It's time to find out WHY this is happening so that maybe something can be done about it, but where is a doctor who will agree with that?!

    Mary
  8. mollystwin

    mollystwin New Member

    I wonder why your lab tests were so high? The FFC in Detroit charges a special amount for patients whose ins does not cover. It is less than 25% of what they charge.
    Maybe you should check into this?
    dar
  9. kel78

    kel78 Member

    The anti-viral Dr. J. prescribed was Valtrex. She wanted me to take 1.5 tablets 3 times per day. I started out trying one-half tablet and had unbearable heart palpitations and that awful feeling that my body's been poisoned or something. I'd get these shock-like sensations in my head and throughout my body. I could not function on this drug. I had no trouble with the Zithromax the FFC also prescribed, and I took the entire 3-month course of that. Dr. J's reaction to this was that I would not get better if I didn't take all the drugs she prescribed. She showed absolutely NO understanding for the fact that my body will not allow me to take most drugs at the present time. And for someone who claims to be a specialist in FM and CFIDS, that attitude makes no sense!

    I've had this same reaction to many other drugs and supplements such as anti-depressants (which I used to be able to tolerate with no side effects), anti-parasite drugs and herbs, SAM-e, St. John's Wort, etc.

    In addition to my FM and CFIDS, I'm also in perimenopause, but I've yet to find a doctor willing to acknowledge that the hormonal changes going on could be a significant contributing factor to my body being so screwed up! When a pregnant woman has new allergies or sensitivities or reactions to drugs or food or whatever, the medical community doesn't seem to doubt the role of hormones, so why can't they open their minds to the possible effects of perimenopause (beyond hot flashes)?

    I've pretty much given up on getting any help (or even simple understanding) from doctors as far as my FM, CFIDS, and perimenopause go. Hitting those brick walls at every attempt just adds tremendously to my frustration and depression, and that's the last thing I need! Actually, I wasn't at all depressed or stressed when my symptoms began to increase and affect my daily life a few years ago. So my doctors have only added to my misery.

    When I told my primary care doctor about my visit with the FFC and shared the lab results with him, hoping we could use this info to work on possible treatment plans for me, he wouldn't even take the copies of the FFC's reports that I made for him. His ego was clearly bruised by the fact that I had dared to seek help elsewhere, and he spent our visit trying to scare me by claiming that some of the FFC's treatments could be dangerous. He seemed to think the Clinic was in a dirty back alley somewhere, with unsterile, medieval equipment; it was ridiculous! And he wouldn't even look me in the eye as he made these assertions! Needless to say, I lost all respect for him that day and will be finding a new doctor.

    Mary