Anyone heard of Fibro Fatigue Center?

Discussion in 'Fibromyalgia Main Forum' started by sop28, Mar 23, 2006.

  1. sop28

    sop28 New Member

    I went to this Fibromyalgia and Fatigue Center-and walked out with a huge bill, tons of supplements and sort of feeling like my vulnerability was being taken advantage of. Also anyone heard of a clinical pharmacist facilitating dx and help?
  2. claudiaw

    claudiaw New Member

    A lot of people here have gone and are going.

    I think most have been helped.

    I live in nashville, there are none here so i have not gone.

    You should have several response to this question soon.:)

    Claudia
  3. kasilou

    kasilou New Member

    Hi,

    There's been many messages posted about FFCs, some positive and some neg.

    I've been tossing around going. Need something to help.
    Were you able to go visit and get information first before making an official appointment? Where was the FFC located?

    How expensive was it, did you know before going what the cost was, and did your insurance cover anything?

    Will you continue?

    Hope you get some help, Good-luck, I know this condition is awful, and hope you get some relief.(sorry for so many questions)

  4. mollystwin

    mollystwin New Member

    Lots of us have heard of FFC and many are getting treatment there. My sister is currently going to the one in Detroit and is improving after 2 months, though she still has a ways to go. I am going in May. The supplements really seem to help. They will load you up with supplements and then when you are feeling better, will wean you off to a few basic ones. I think if you follow thier protcol, you will feel better. Don't feel taken advantage of. I know how you feel, because I was very reluctant about them too, because I have to pay everything out of pocket, but after hearing of those who have been helped and personally experiencing my own family being helped, I am no longer sceptical. These clinics and few others like them seem to be the only places that help Fibro/Fatigue patients get better. My SIL wen to a fibro specialist at U of Michigan, some hot shot dr. and he did not help her at all. Good Luck and keep us posted!
    Dar
    [This Message was Edited on 03/23/2006]
  5. sop28

    sop28 New Member

    There are centers across the county. The initial visit was $360, +150 for an IV that made me smell like creamed corn for 24hr, and supplements-totaling $850. They don't participate with insurance companies, I am still waiting for the forms to send and see if I can be reimbursed for part of OV/IV. I have been on medical leave for 6 wks and have no income at the moment. I thought I was going to pass out when I got the bill! I was told that most likely(labs not back yet)I have candida overgrowth, hypothyroid, and adrenal fatigue on top of FM/CFS. I was concerned because I did some research and spoke with someone that said that you shouldn't be hit hard with hormones, etc.. if your adrenals are exhaused? Soooo sorry to blather on like this I am just so confused and have many decisions to make. As you know w/ FM/CFS decision making have be horrible!

    Gotta go my hands are going numb!
  6. intensemom

    intensemom New Member

    Yes, I've been going to the one in Detroit for almost 3 mos. They're great, very responsive. I'm feeling better. I am also doing everything they say to do...all supplements, diet and excercise! I'm pain-free most of the time and can now make it throught the day without a nap! It's expensive...but I figure my health is worth it. I felt vulnerable when I left too, but they have not let me down. Everything happens just like they say.

    Sincerely,
    Tracy
  7. heathnicole

    heathnicole New Member

    Hi Sop28-

    I am sorry to hear that you have not felt any better. I myself was considering going there but Iam weary about spending all that money.
    Could you pplease let me know which one you went to and if you are feeling better yet?
    thanks and you will be in my thoughts
    heather
  8. intrigue

    intrigue New Member

    I've been going to the Dallas FFC since October.

    I am finishing up with my treatments and I am hoping to move to the maintenance phase soon. I get my blood work re-tested in three weeks. I feel about 400% better than I did last september. I still have a lot of work to do (exercising and working off the extra weight this lovely dd has given me) but I am moving forward with my life.

    It IS expensive and probably not for everyone. If you vist their website, you can find out about free seminars at your local clinic. They give you a tour, give you the chance to ask the doctor questions, and when I went, they gave a discount coupon.

    The treatments can be tough, and you really need to give them 6 months to a year to make you feel better. They WILL make you feel worse before you feel better.

    I am actually a huge skeptic about going in to a place like this. I always worry that they're going to end up on the 10 o'clock news or something. So far, that hasn't happened. The doctor and nurses have been super and I feel better every week. (And btw, my costs are finally starting to come down since I am starting to drop some of the supplements and med)

    Hope this helps!
    Ellen


  9. acesk

    acesk New Member

    There are several of us on this board and quite a few on another board that have not been helped by FCC.

    I went for a year (long distance after traveling to Denver for the first appt. They were very nice and, yes, expensive, but I was willing to try anything. (Before this I went to the Hotze Clinic in Dallas - also flew there and very expensive - they advertise in airplane flight magazines - they didn't help either)

    I'm now going to a good pain clinic and a good rheumatologist and am doing better. Stretching and massage is helping a lot also.

    I wish you luck with FCC - they help about 40% of their patients, from what the doctor told me.

    Sue in Florida
  10. heathnicole

    heathnicole New Member

    SUE and Ellen-

    Thanks for writing - I just am begging for help as to what I can do. I am 23 with Fibro, CFS, and Hashimotos and I need an expert doc. I live in ORlando and I can't find and docs down here.
    Where can I find a good hollistic do with out getting ripped off?
    I was considering going to the Atlanta FFC but after that post I don't know anymore.
    I thank you from the very bottom of my heart for any help you might have :)
    heather
  11. kellyann

    kellyann New Member

    Hi,
    I go and have had to pay out of pocket for myv isits, which are quite expensive. but I feel like it is well worth the cost. Dr. Bullinton here in Atlanta is the very best Doctor I have ever seen. She listens and does her damndest to find out what is making you sick. I have all the supplements, they are expensive as well. I also had the adrenal fatigue and yeast, plus I found out I do have Lyme disease, microplasma, epstein barr, cmv, and something else I can't remember right now. I had to pay $160 extra for the lyme test, which if you get a chance, please get tested. I'd have never thought in a million years I had lyme. But after recieving the diagnosis, I read about the symptoms of lyme. And it fit me so well that I just sat and cried. I am now on a heavy doses of 2 antibiotics, plus I am going to try and get on famvir. I'll have to go to my primary care doctor and try and talk him into precribing it for me because Dr. Bullington is not on my insurance plan and they will not pay for prescriptions she writes. The famvir would cost me $1000.00 for 30 pills. I can't afford that. I have gotten really sick on the antibiotics, but Dr. Bullington says that it is from die off of the viruses I have. If you can afford to go see Dr. Bullington in Atlanta, I highly recommend her. I have also gottone the i.v. that makes you smell like corn for awhile. My husband thought our baby's bottles had gone sour in the truck on the way home, haha! The i.v. did help some with my pain for a few days, as it was also loaded with lidocaine. Beyond that I don't know if it did any good or not.
    Take Care!
    Kellyann
  12. heathnicole

    heathnicole New Member

    Thanks for writing me! I def. need to get tested for Lyme- A good one. I have only had the standard tests done. So it is on my list of things to get tested for.
    I appreciate all your help. So you go to the Atlanta clinic right now? HOw long have you been going? Feel any better? What insurance do you have? I ahve BCBS- PPO - So I would have to check into see what they would cover.
    I am going to do some research on your med- you know that are programs for people who can't afford their meds right? You also know you can fight your insurance company about the meds!
    Also, find a primary care doc who is on the cfs/fm list and they almost always are willing to treat you for stuff like that.
    Do you live in Atalnta?
    I could send you a list of doc' there?
    Let me know
    Blessings and prayers
    heather
  13. intrigue

    intrigue New Member

    Search for posts by ldbgcoleman. (I believe) she goes to the Atlanta FFC, and she has had great results. You will find many inspirational posts from her.

    I understand TOTALLY not wanting to get ripped off. I believe these clincs are the real deal. However, I think so many of us have such differing problems, they can't help everybody.

    Its a big decision, and its not an easy journey.

    Again, try attending one of the free seminars and go and see what you think.

    - Ellen

    [This Message was Edited on 04/10/2006]
  14. heathnicole

    heathnicole New Member

    Thanks Ellen but I can't attend one of those seminars because I would be driving 10 hours just to get there.
    So . . there goes that idea.
    Also that name that you told me to look up can't be found? God any other ideas of her screen name?
    thanks for the help
    blessings and prayers
  15. heathnicole

    heathnicole New Member

    I tired a search using FCC atlanta andI think i found her
    I will see what I get
    thanks gain
    heather
  16. intrigue

    intrigue New Member

    I can see where 10 hours is a heck of a long way to drive. :) I don't blame ya.

    When you search for ldbgcoleman, make sure you change the little dropdown list next to the search blank from "title" to "username". That will show you all her posts.

    Good luck!
    Ellen
  17. sop28

    sop28 New Member

    Sorry, I haven't been on the computer for a long time. I cancelled my 2nd appointment with the FFC; I went to the one in Pittsburgh, PA. After doing a search for FFC on the board and reading the posts I decided not to continue going there. I really don't feel like spending 10,000 over 1 year and feeling worse in the end, not that this would happen for sure but I don't want to chance it! I am starting to feel somewhat better. A friend of mine went to a clinical pharmacist that looks at similar things (adrenal fatigue, hormones, etc..) but my PCP will not cooperate. I'm currently waiting for a list of doctors that she works with. Time to change doctors! I am going go with this, she seems to do one thing at a time and not hit you over the head with treatments that end up making you feel worse. Anyway, did you look at the list of doctors on this site? There aren't that many but it's worth a try. I'm going to wait until I get the list from the pharmacist. Sorry, I wasn't much help-I'm in limbo myself! Hope things workout for you :->

    Tammy
  18. UnicornK

    UnicornK New Member

    How do I find one in Maryland, near Washington DC?

    Thanks!
    [This Message was Edited on 04/11/2006]
  19. sop28

    sop28 New Member

    Check the web site: http:/www.fibroandfatigue.com
    It will give you the list of centers, the phone number, and information about what they do.

    Hope this helps,
    Tammy
    [This Message was Edited on 04/12/2006]
  20. heathnicole

    heathnicole New Member

    I know what you mean I don't have 10,000 to spend either.
    I guess I will keep looking around. I am not going to go to the atlanta one if it isn't going to help.
    My problem is that I am in a poor location and the docs on the "good doc list" aren't any good for me.
    Floirda just seems to have a lack of doc's around here.
    Thanks for trying but at this point I am not expecting much I have been sick since 18 and I am now 23 and haven't had luck so I don't see things changing. good luck with your pcp I hope he is supportive

    blessings and prayers
    heather