Success with Fibro and Fatigue Centers?

Discussion in 'Fibromyalgia Main Forum' started by ask2266, Jan 24, 2007.

  1. ask2266

    ask2266 Member

    I go to fibro and fatigue center in atl and have had some success in improving my condition. (probably 50%) I haven't heard anyone mention them here. Has anyone had success with their treatment? Thanks. :)
  2. atlanta

    atlanta New Member

    My daughter has been sick with cfs for 21 years. She has now had her first session with the fibro/fatigue in NW Atlanta. She was started on a suppliment that is too strong for her and is now taking half of that pill. No other treatment has been given. Please get me updated on how you do and I will do the same for you. We would be thrilled if she could even be 10% better.

    Atlanta
  3. atlanta

    atlanta New Member

    My daughter has been sick with cfs for 21 years. She has now had her first session with the fibro/fatigue in NW Atlanta. She was started on a suppliment that is too strong for her and is now taking half of that pill. No other treatment has been given. Please get me updated on how you do and I will do the same for you. We would be thrilled if she could even be 10% better.

    Atlanta
  4. deliarose

    deliarose New Member

    a ton of stuff will come up

    they seem to have a very checkered track record from what I can tell.

    Maybe it depends a lot on teh competence of the doc u get?

    It seems a lot of their docs don't have a background in infectious disease.

    Who knows.

    I tried one of the top-rated CFS docs.. dr.charles lappp..in N.CArolina. Seriuos $$ and he didn't do much to help me.

    I ended up with Dr Joe Brewer in Kansas City, MO. I like him, I'm improving, but I don't think even he wld say he's got this thing entirely figured out.

    what he does say,is that if shut the viruses down, the body seems to go back to normal.

    Good luck
    Delia
  5. Slayadragon

    Slayadragon New Member

    I go to a different doctor who speciaizes in CFS, FM and other problems that conventional medicine has yet to learn to treat.

    My observations about the FFC's based on info on this board are as follows:

    * Despite the fact that Dr. Teitelbaum is now their medical director, they do not seem to spend much time using the approaches listed in his book. Many people believe these issues should be addressed first before others (such as antivirals) are used, but this does not seem to be the strategy of most of the FFC doctors.

    * They often prescribe many treatments at the same time (as well as supplements that contain many ingredients). This makes it difficult to know what's working. It also can provoke overly heavy responses in some patients (especially with regard to herxing on AV's).

    * The quality and experience of doctors vary.

    * They use a lot of antibiotics. Some people have found this useful. Others have ended up with systemic candida infections that have made them worse.

    * They use the milder AV's (sometimes Famvir and often Valtrex) very often. Frequently these are prescribed in high doses, which does not cause problems for many patients but which causes some to have major (and perhaps life-threatening) die-off reactions. They usually use these AV treatments for relatively short periods of time (3-6 months) and get either some improvement or no improvement. It is my impression at this time that these milder AV's have the potential of leading to major improvement or total remission, but only a) if the fundamentals (as outlined in Dr. Teitelbaum's book) are addressed and b) if they are taken for longer periods of time (like 12-18 months). Valcyte is stronger and so possibly may have more success when used for a shorter time period, This is just my opinion though, based on the results I have observed from various protocols.

    I would consider using the FFC's if I didn't already have a good doctor. However, I would take the position that I was in charge of my health care and that I was using the FFC doctors for tests, prescriptions and advice. This approach takes a lot of knowledge-gathering in the patient's part, however.

  6. ask2266

    ask2266 Member

    I wasn't prescribed any prescriptions by FFC(such as thyroid which has helped me a ton!) until they got my bloodwork back and could see where I was deficient, so your daughter will probably get more info at her next visit. I hope that she sees some improvement. This disease is like walking through fire. It'll bring you to your knees.
  7. deliarose

    deliarose New Member

    u wouldn't try one but you can't tell us why. How is that helpful? If your contributions are going to be that cryptic, it's probably better not to post. You're not adding anything to the debate.
    Delia
  8. SGR

    SGR New Member

    I've had two appointments at the center in Beaverton, Oregon. I'm very happy and so relieved to talk to people who don't think it's all psychological. And what a relief to have actual blood tests run that ask some of the right questions. Up to this point I've dealt with people who have done nothing with the exception of a naturopath who did a fantastic job considering what he was up against - EBV. Muscle and joint pain much improved after one month on nutraceuticals prescribed by FFC. Will keep you posted on further results.
  9. SnooZQ

    SnooZQ New Member

    SGR & others with FFC experience,

    I'm considering trying FFC but am wondering how cookie-cutter their approach is. The Beaverton OR clinic is closest to me, but my take on what's been said so far is that there's considerable variation in practice from doc to doc, even within FFC.

    I've got lifelong autoimmune/collagen vascular issues that I've been muddling along with. So much overlap between syndromes that most days I don't know which one is causing the symptoms.

    So, my question is ... would you have confidence in FFC for a "complex" situation - fibro+ CFS+ lupus/MCTD+ OA+ RA+ Sjogren's+ hashi's ... have gotten only so much help from internal med docs & local naturopath. I went the rheumatology route decades ago & am not very interested in that approach.

    Does FFC offer most of the Immunosciences panels? There are a number of them I'm interested in getting done ... or do they have their own lab drill.

    Thanks for any advice.
    [This Message was Edited on 03/02/2007]
  10. twitcher

    twitcher New Member

    Can anyone tell me how much it costs to be seen at the FFC? I would be going to the one in Cleveland, Ohio.

    Thanks
  11. kellyann

    kellyann New Member

    Hi,
    I go to the FFC in Atlanta, I have for nearly a year now. I just love Dr. Bullington. As far as improving my condition, not much so far. But I did find out I had several infections plus Lyme disease. I am currently on bicillin injections to treat the lyme, and it takes time. Dr. Bullinton does work with me to get my pain under control, and my tyroid med right, also female hormones needed adjusted. I have had more tests ran since going to the FFC than I have ever had in my life, haha! Which is a good thing.
    Kellyann
  12. twitcher

    twitcher New Member

    Was it worth it?
  13. namow

    namow New Member

    I have spent thounsands and thousands of $$$$ and don't feel any better, I would say that they probably have done more harm than good!

    THINK TWICE BEFORE GOING THERE!!

    It has been my experience
  14. Mini4Me

    Mini4Me New Member

    I got their broshures, filled out the paperwork and made the call and was ready to shell out thousands of dollars because I was so desparate! But then I started doing a bit of research, and called to get some of my questions answered.

    I'm glad I made that call. It was obvious to me that it was very much a cookie cutter operation, and they talked about helping people who were overweight and out of shape, and how that would help their Fibro symptoms decrease.

    I told the person on the phone that I was underweight and worried about not having an appetite. I also told her I could probably teach others about exercize due to my background.

    She seemed very angry and defensive and said, "well our patients are overweight and out of shape and need to learn new lifestyle habits". I said, "do you have anything in your magic bag of tricks for an underweight, in shape person who has been trim, fit and active for 46 years and now has fibro, degen. disc disease, migraines and severe chronic pain?"

    She hemmed and hawed, and I told her I thought they were just quacks out to make money off of poor suffering souls. She couldn't defend my remarks, and was very nervous (quite telling!).

    Mini
  15. twitcher

    twitcher New Member

    Thanks,

    That's a lot of money to pay for no improvement.

    Twitcher
  16. buffyr

    buffyr New Member

    I went through the pain rehab clinic at Mayo, Rochester. I was there for a month and it has been about 8 months since I went. They changed some of my meds, had me start supplemental vit c and some other natural remedies. I am not "healed", but I can finally participate in life again. I went from hardly functioning and having severe panic attacks to only losing 1-2 days a month from the fibro (usually after not doing what I learned and overdoing it). i actually went snow tubing today with my son. Haven't done that in over 10 years. I suggest a rehab program also because your insurance may foot the bill. I only ended up paying about 200.00 out of pocket. It really did give me my life back. Hope you have good luck with your therapy!
  17. nightstarr002

    nightstarr002 New Member

    I am going to Atlanta. Can anyone tell me where the FFC clinic is in NW Atlanta.
    I have been seeing a doctor in Cal. and getting IV immune drips and doing well with them.
    I do not want to get really sick while I am in Atlanta so would like to see someone there that knows about fibro/cfs.
    Thanks for any info you can help me with.
    Nightstarr the bunny
  18. bttaylor

    bttaylor New Member

    I started going to the FFC in Bellevue, WA outside of Seattle and saw Dr. Marti the first of January. I was diagnosed with Chronic Fatigue. She told me I have a hormone deficiency, am anemic, and have a hypothyroid- those were the major issues. It IS very expensive that is true. But all the other doctors I have seen in the last few years told me it was just a virus and to get back into my regular workout routine, or take these antidepressants and it will gradually go away. Well non of that was workig. I have heard good results from other people that have gone to this clinic. If it means improvement in your life it is worth it. I don't feel at all that it is a cookie-cutter approach. How many Dr.s spend over an hr. with you on each appt? She said you have to be patient and that some of these medicines take 3-4 months to start working. Plus you do not have to be on all the supplements they give you forever. Most of the supplements are natural and the thyroid is a bio-identical not synthetic.

    I was glad to see this subject and to read other people's experience with these centers but of course disappointed to hear the negatives. They say they have a 72% rate of people getting at least 50% better. I am not sure if that is at this clinic or all of the FFC's (there are 14 I guess) But if I am one of those people I am going to be jumping up and down!! Beth
    [This Message was Edited on 03/04/2007]
  19. Sandyz

    Sandyz New Member

    I started at the Dallas FFC about 2 years ago. I was make progress and felt about 70 percent better then I had. I was happy with most of their treatment and things where going well. Then I had two big set backs.

    I found out I had intersistial cystis. It took me 7 monthes to get that under control. Then I started having gallbladder problems. After lots of test and monkeying around for 6 monthes, I had it taken out 3 weeks ago. This is the best I have felt in years!! So, I am hopeful I can get back on track with my FFC treatments.
  20. spiritsky

    spiritsky Member

    I was very grateful for the FFC to get me back on my feet again and back to work initially. But then I moved on to more natural herbal solutions and am glad not to have to spend my money there. While I was grateful for the help, they do want to make a lot lot lot lot of money doing the helping. I think they do a lot of price gouging for their supplements/hormones etc...But, as i said I was grateful for the help when I was very desperate and couldn't get any doctor to help me, but also grateful to have found better answers and not to have to deal with them anymore.