Anyone worse after FFC treatment?????

Discussion in 'Fibromyalgia Main Forum' started by laf5307, May 12, 2006.

  1. laf5307

    laf5307 New Member

    I have been treated by a Fibro and Fatigue Clinic for a little over a year now and am slowly worsening. I was diagnosed after my blood work came back with a C.pneumoniae infection, Hashimoto's thyroiditis, low estrogen, progestrone and testosterone, DHEA etc. All of which I have spent a fortune ($6000.00) treating and feel worse than ever. I recently had blood work checked by my family doctor and by T3 was off the chart, I was so exhausted it was unbelievable. They took me off the compounded med. right away and I feel much better. I even stopped most of the supplements except for a few key ones and I feel better. Anyone else had this experience? Believe me I know they have helped alot of people, just not me. I have returned to traditional medicine.
  2. Shannonsparkles

    Shannonsparkles New Member

    I'm so sorry you gave it your all with FFC for a year, and only got worse. After I flopped with them, I felt sure that nobody could have the answers for me.

    I was actually better off before I tried them. All it took was a few new suppliments over several weeks, and I was so much sicker! And they weren't even "killing" suppliments that would cause die-off symptoms, they were just things I had bad reactions to. Really blasted off what was left of my health. And I started getting pain which I didn't have before, and it hasn't completely gone away, even after all these months since I stopped the new pills.

    I've struggled to get my optimism back after that. I try to believe too that the experience was worth it for the lab tests. No one can tell me that I'm "just fine" after they look at that. Although it hasn't helped me directly, it has made me aware of what areas I need to work on and which specialists I need to see. And it's reassured me that I'm not malingering or playing for sympathy or trying to act out my issues on my family, or some other nonsense like that. So I could say that FFC has helped me get some of my self-respect back, and given me some new directions to work on.

    I regret that it worsened my illness though. I am very sensitive to every kind of substance, but I wasn't prepared for how badly it went for me, trying the new pills. And I wanted them to work so badly that I kept using them longer than I should. But I'm still here and I'm still fighting. I think I may have come out of it wiser too.

    My advice to anyone considering using the FFC is:
    1. Don't go in believing that it's a sure thing. It's simply a tool, a good tool, but there is a chance that it may not fit you.

    2. If you go and it doesn't work out, remember it's not the only option. There are other things to try. FFC can make you aware of what's going on in your body, even if it doesn't make you feel better, so it's not a total loss.

    3. If you can't afford the money for FFC, please don't go. How would you feel if you got sicker AND had all those debts? If you can't afford it, try something like Stormyskye's protocol, or other sensible plans from our members, which are very close to what the FFC uses. You can get a general idea of their plan from their website, and you may be able to work with your doctor to do something simaler on your own. Someone posted the "FFC test list" here, so you can ask to have those particular tests run.

    4. Remember, most of all, you have the spirit to carry on no matter what happens to you. You've made it this far. Never give up trying.
    (((DD Warriors))) Shannon
  3. auntyemnga

    auntyemnga New Member

    I'm sorry to hear that you feel worse after a years treatment with the FFC.

    I went to the Atlanta FFC for 3 1/2 months. They made my fatigue worse to where I could hardly get out of bed. They messed with my hormones and as a 2 time breast cancer survivor the Dr had prescribed things she NEVER EVER should've prescribed.

    I am now seeing an internal medicine doctor who is using an alternative therapy. I feel I am making progress. If you want to read more about my FFC problems, do a search under my username.

    Good luck in your future progress to health,
    Auntyem
  4. ANNXYZ

    ANNXYZ New Member

    a rotten time . You and Shannon are right to advise others to spend your dollars at the FFC VERY carefully , because so many of these treatments simply
    do not have a long track record for documenting success.

    Many of their suggestions do make sense , but there is not enough proof or science to say that they are effective yet . On one hand they do seem to be trying to offer help to people who are desperate and who are usually dismissed by most docs ( or simply treated for pain) . Yet with that in mind , the cost is almost outrageous . Someone here posted ( TXFMMOM) that she bought glutathione from Dr Salvato for a very low price
    ( about forty dollars ) . The Atlanta FFC sold it for $ 200 a vial.

    Also , an hour with the doc is $ 360 . Usually you see
    a doc who is a GP , so that seems steep .

    I do think that most of the docs probably have good intentions , but Shannons advice about implementing protocol ideas that seem reasonable with your own doc
    is also a good idea .

    I honestly do not think anyone has a clue what the root of this disease is , including all of the " CFS GURUS "
    who lecture and write books and are viewed as "experts " .

  5. Mikie

    Mikie Moderator

    I had higher hopes for people who took the time and spent so much money to go to the FFC's. I wish the outcomes had been better.

    I was initially impressed because these clinics seemed to be looking and treating in areas which have helped me. I had to do it without the aid of the tests for the most part, and guess I've been lucky that the treatments my doc and I decided on helped me.

    Thanks for posting as we always need all the anecdotal info we can get so we can make informed decisions.

    Love, Mikie
  6. LISALOO

    LISALOO New Member

    I feel worse after 9 months, but I'm allergic to the thyroid med they gave me. So that hindered me. Plus I didn't start with candida meds til two months ago.

    Also they didn't find any bacteria or viruses to treat me for.
  7. acesk

    acesk New Member

    I'm so sorry you had problems -so did I. Was the same after 1 year with the FCC in Denver and spent around $2500. Have a good pain doctor now and am doing better than ever on Flexeril and Ultracet.

    Sue in Florida
  8. ldbgcoleman

    ldbgcoleman New Member

    My experience has been That I am feeling much much better. i have talked to alot probably over 30 people now who have been going 6 months or longer and I would say at least 75-80% were doing much better. I am not saying I doubt anyone here.

    Nothing is 100% but I will say several of the people not doing better did not seem to be following the protocol very closely or sometimes at all. Just my experience. I also have noticed that it takes much longer for people with Lymes and for people that have a low tolerance for the meds.

    I think if they can figure out what is wrong with you then they can work on treating it. This is an extremely complicated condition and is very difficult to diagnose and treat because each person has a different set of problems and responds differently to treatment.

    I don't think this is a ripoff (obviously) but I also don't think it is a cure all. I don't see FM or CFS being cured by a magic pill from anyplace. BUT I will say the extensive testing and approach to treating underlying illnesses is miles ahead of most Drs who only treat the symptoms. I think the FFC is on the cutting edge and is not afraid to try new treatments and to work with you on a treatment plan.

    I am not cured (nor did they ever tell me I would be) but I have made the EBV inactive and severely disabled the mycoplasma which has given me back my life. If I had continued on the path I was on and accepted what my Rheumatologist told me I would probably be bedridden by now instead of living a fairly normal life.

    Lynn
  9. Bambi

    Bambi New Member

    what they've laid out at the centers, but I'd love to see the same tests run by different labs and see if the results were the same. I know that the guy who first reported on the Mycoplasmas, just can't remember his name..Nicholson? had certain labs he
    recommended. It would be interesting at least to see if the test results were the same..IF you could even find a doctor to order them all.

    It just seems like with such SERIOUS results a second opinion wouldn't hurt, doing better or worse. I'm a natural born sceptic I know..but we'd want a second opinion if it was a mammorgram or something that said positive wouldn't we?[This Message was Edited on 05/13/2006]
  10. WendyC

    WendyC New Member

    Sorry to hear that others have not been helped. I have been helped a great deal. i do not do their IVs too expensive and research doesn't back them up. For instance, research has shown that the best way to raise glutathione is Whey and milk thistle as well as C and E. Waste of money to do IVs.

    Also, I insist on going slowly and adding one med or supplement at a time so that I know what is working and what makes me ill. This works for me, drives doctors crazy.

    I will be focusing on candida and detoxing over the summer, as well as treatment for hypercoagulation.

    Wendyc
  11. laura81655

    laura81655 New Member

    I went a couple of times to the Torrance Facility in Calif. They charge 385.00 a visit. I researched everything that they wanted to try. The Supplements they offered weren't doing anything. The IV's didn't do anything, but I am still on the Compounding Cortisol, 10 mg. that the doctor prescribed. I really am thankful that I am taking this, helps with my pain that I was able to exercise more without being so darn flared afterwards.

    I won't be going back but will continue to get the Cortisol from my regular MD.

    Laura
  12. Mikie

    Mikie Moderator

    Looks as though it's a mixed bag, which is normal for us. I believe the best we can do until there is a cure is to treat the assocaited symptoms/conditions and try to build ourselves back up. Lifestyle changes often do more for us than any treatment.

    Thanks again for everyone who has contributed to this discussion. It is helpful.

    Love, Mikie
  13. onedaymagpie

    onedaymagpie New Member

    I have gone to FFC starting June of last year. For a while, I was doing everything they advised and it really seemed to wipe me out. I expected to "feel worse, before better", but it really did not feel right and was lasting too long. So, I backed off of a lot of the supp's, etc. but still follow some things, like the T3. Since doing that, I seem to be doing somewhat better. You know, better days, worse days, it is hard to tell.
    Can I ask - when you say your T3 was off the chart - you mean it was high?
    Thanks, Mag
  14. Lolalee

    Lolalee New Member

    This has been a very interesting thread to read. A few months ago I was in the middle of a horrible, housebound, bedridden flare and I was desperate. I called FFC and made an appointment. Somehow it didn't feel right. I would have had to travel and stay overnight so this was going to be a huge expense for me. I knew that I had made the appointment out of desperation.

    I finally ended up canceling the appointment because my intuition told me that the FFC was not the right choice for me. When I called to cancel they really pushed a "hard-sell" on me and tried to convince me that I should re-schedule. That really turned me off.

    I am glad that many people are being helped, but I feel very sure that I made the right decision for me.

    Lolalee
  15. keke1972

    keke1972 New Member

    I have been going to the ffc since Dec.27,2005. I am feeling pretty bad also. I kept telling the nurse and the dr. that I felt the thyroid may be too high for me. I wasn't sleeping at night and was irritable. The dr. lowered the dose to 37.5 and I continued to feel irritability/hyper. I think I thought I was feeling better because I was charged up for days. I couldn't sit still. I know have crashed. I am absolutely exhausted.......... I think being treated 4 hours away is not a good idea. Sometimes it took several days of calling to get a response from anyone. I will stay on the cortisol and some supplements, but I think it's time to discontinue. I have a gut feeling this isn't going to work. Thanks, Kristen
  16. toronto133

    toronto133 New Member

    Ultimately, I didn't stay with the FFC after 2 appts. It was an expensive exercise for me as I had to pay for all of the labs. The physician costs were reasonable in comparison.

    Oddly, I got the impression from the doctor I saw, that he didn't really believe in the treatment. He certainly didn't know much about the various infections that they tested for (and he has since left which didn't surprise me). Support staff however, were competent and professional.

    However, I must credit them for testing me for Lyme Disease. That put me on the right track for treatment elsewhere. So in retrospect, I do not regret going there.

    Denise
  17. Empower

    Empower New Member

    I can't speak for FFC centers, but I can tell you that I went to a holistic doctor and he put me on thyroid medicine and Cortef and I REALLY went downhill. I had to be weaned off both medicines. It was a nightmare.

    I am very skeptical of the FFC Centers, although some people say they have gotten better while going
  18. namow

    namow New Member

  19. bunnyfluff

    bunnyfluff Member

    I have never contacted them! I considered it "odd" that they somehow "knew" I had Fibro & CFS, and mailed out information to me.

    So, who's selling my information?? My real name and address is not listed on any of these sites.

    So, now they are soliciting customers. By boldly buying infomation from somewhere. The question is- where???
  20. mme_curie68

    mme_curie68 New Member

    It is possible that even though you didn't think anyone could get your information to send a targeted adverisement that you were found in spite of websites that don't share your information.

    A cousin-in-law of my husbands works for a web-based company and that's all they do - they can "follow" your surfing by planting a cookie in your computer that then tracks where you go and what you look at.

    People then pay his company for the information that these "back-door" cookies glean.

    If you look in the "Cookies" folder of your web browser, you can actually see these companies at work - you'll see lines that show you logging in to a legit website and right alongside them, you will see cookies from companies like "adclick.net" or "double-click.net".

    You can limit this information mining by putting restrictions on the cookies. Also, clean out cookies, cache etc. EVERY time you leave your web browser.

    A web search for "spyware" will give you some free "anti-spyware" programs that you can download to get rid of the "snooping" company cookies that data-mine.

    Hugs,
    Madame Curie