Fibromyolgia & Fatigue Centers

Discussion in 'Fibromyalgia Main Forum' started by chmolz23, Aug 11, 2005.

  1. chmolz23

    chmolz23 New Member

    Fibromylagia & fatigue centers(web site removed...this site is a "sponsored site" selling many things MOD..) has anyone beeen evaluated at one of the fifteen centers across the USA? It was founded by a physician who suffered from CFIDS and was able to heal himself. A center has recently opened in the Philadelphia area. If you have been to one of their centers, What do you think of their protocol? Has it been effective? Would you recommend it? I am contemplating whether I should give them a try.




    BLUEROSE7 New Member

    I am very curious as well to your questions?

    Wonder if there is one in Virginia?..goona have to do a search unless someone knows here...

    Bump For Chmolz23 & Answers

  3. Dolphin_lover

    Dolphin_lover New Member

    Dear chmolz23
    I have checked out the one in L.A. (Dr. Holtorf) I have not gone to it, but read about it and the doctor. I have seen the best doctors in L.A. and Nevada. I recently moved and am looking for a doctor in my area. Dr. Holtorf is a couple of hours away, but if I don't have any luck where I am now residing, I'll definately go to see him. I checked out his credentials and I am v-e-r-y picky! So, I'd give them a try. My previous doctors' are well known CFS researchers and leading CFS doctors. And I know a lot who are quacks in my area. Dr. Holtorf is into hormones and some things I have not yet tried. And believe me, I have tried everything. I have great medical insurance which has afforded me the best. I have had CFS for 17 years. God bless. Let us know if you go and what you thought.
  4. CFIDSNicole

    CFIDSNicole New Member

    Do a search here for FFC---lots of people here are going to one and usually this is how they abbreviate it.

  5. Fredskid

    Fredskid New Member

    I have had CF since July 1988. I am able to function very well now although I spent 4 mos. in bed at the beginning. Just recently, I have been experiencing tremendous pain all over my body. No diagnosis yet, but came across an article in Women's Day that talked about "Women's Pain". The piece written about Fibromyalgia fits me to a T. I am making an appt. with my doctor and taking all the information I have.

    I gave up going to see Doctors about CF some years ago and usually monitor myself - taking rests during the day - limiting activities outside the house that are unnecessary, etc. Although I lead a very high profile life, my husband is in politics, and I am the founder of a non-profit for children, I have been managing myself quite well. This new twist of the pain has been quite debilitating. Have you found that seeing a doctor for CF has helped you?
  6. ldbgcoleman

    ldbgcoleman New Member

    There are numerous detailed posts about exactly what happens at FFC's and how they work. You can click on my profile and read my posts. Also try searching authors wishingonastar, sarasmom, suseq, cindycor and many others. We are all getting better on the FFC protocol. Good Luck and I am happy to answer any questions. Lynn
  7. wishingonastar

    wishingonastar New Member

    Just thought I'd pipe in for a moment. I have been going to the FFC in Cleveland since December, 2004. In the beginning of my illness (July, 2004) I felt like I had hit a brick wall. I went from a well functioning person with a full-time job and raising my daughter to nothing. I literally couldn't get out of bed and had to have my 70 year old dad take care of my daughter.

    I spent 5 months dragging myself to doctors all over the "renowned" Cleveland Clinic only to be told by each of them that there was nothing they could find wrong with me and of course, nothing that they could do to help me.

    By November, I was frantic because I thought I was going to lose my job, which I loved! I was very fortunate that my boss was willing to work with me and said that he didn't care how long it took for me to get better, to take my time and take care of myself.

    Then I found Dr. Juguilon and she promised I would get better, and I have! I am now back working full time, can take care of my daughter just fine (we even just got a new puppy!), can go to the movies and shopping, can "plan" get-togethers, etc. Even 2 months ago, I was still a little wary of planning things, especially after 2:00 p.m.

    Dr. Juguilon is a wonderfully caring and compassionate woman. She has given me my life back, no doubt in my mind. She found all sorts of things out of wack, besides the basic hormonal imbalances that come with this territory, she found an Epstein Barr Virus and systemic yeast infection. I'm still battling them now, but have a much stronger immune system to help get rid of them.

    At my last appointment, she said I should come back in three months and that I'm doing very well. I definitely agree, and so would my 10 year old daughter.

    Best of luck to you all! I suggest that you give the FFC a try, and if you can get to Dr. Juguilon, I'd go...she's definitely the best of the bunch!


  8. HppeandMe

    HppeandMe New Member

    Which center is this doctor at? What did she give you? How long until you felt better. I have been going for almost two months and I am not feeling any better. Please tell us more.

    Thanks a bunch!
  9. ldbgcoleman

    ldbgcoleman New Member

    Wishing is going to the Cleveland center and I am at the Atlanta Center. 2 months is no where near long enough to be feeling better. It will probably take 4-6 months depending on what they find and how embedded it is, how long you have had it and how you respond to treatment. How much tweaking they have to do with your medications and supplements.

    Also how committed you are and how well you are following the instuctions. I have been taking everything they have given me and having IVs once per week. I have been fairly strict with the Candida diet. ( Ok this week I have fallen off of it a little I admit!) There is no magic amount of time that you will feel better. There are alot of factors that go into this and you didn't get it overnight. These viruses become embedded in our systems and are extremely tough to eliminate.

    Good lUCk with your treatment. Lynn
  10. Mikie

    Mikie Moderator

    Have been discussed quite a bit here by those who have used them. You might want to do a search to bring up the old posts.

    Love, Mikie
  11. saraebeth

    saraebeth New Member

    but I believe they don't take insurance. How much money are those of you that are going spending?
  12. HppeandMe

    HppeandMe New Member

    Hi Sarabeth-

    I have been going for about 2 months and have put out about $1500. You can submit to your insurance however and they may reimburse you. My insurance reimbursed me 1/3. I guess that is better than nothing. The hard part for me is the IV's. They are $115 a week. Not to mention a 3 hour drive each way (stay off the road) :)

    I hope this helps!
  13. Jeanne-in-Canada

    Jeanne-in-Canada New Member

    there is no centre near you. Not all parts of Canada have env. medicine, but Ottawa and Toronto, handy to New York, Maine, Vermont, etc. have excellent environmental docs and their practices operate very much like the FFC's.

    Gorgeous here this tme of year and into fall. And considering how expensive the FFC's are w/out full insurance, the Cdn. exchange may make it worth the while too. YOur money is worth 25% more here.

  14. Musica

    Musica New Member

    My rheumy, even before we started talking FM (I also have RA), has mentioned a pain specialist more than once. I tell him my pain isn't that bad, something just hurts all the time. Sometimes, I do get tired of hurting all the time or being fatigued after doing things I wouldn't expect would tire me out that quickly.

    Is there a standard protocol for FFC's? I mean, are infusions part of treatment for everyone? Are they primarily for severe cases? And do you have to go to them for a long time (or all the time) or can they just help with pain techniques? When they do help, do you ever feel painfree?

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