Fibro and Fatigue Clinic

Discussion in 'Fibromyalgia Main Forum' started by jillc62, Jan 24, 2006.

  1. jillc62

    jillc62 New Member

    There is a new clinic is in Cleveland now. I'm very reluctant about checking it out. Has anyone gone to these clinics? AFter searching for years for help, I really don't want to waste my time and esp. money if it isn't going to work.
  2. jane32

    jane32 New Member

    I have been going for 4 months and it is definitely helping me. Everyone is different with what workes for them. It is expensive but I was willing to pay whatever the price to get back on my feet.
  3. bettydroop

    bettydroop New Member

    I just went to my first appointment in bellevue/ Seattle area. They took 31 vials of blood - which IS standard. Loved the Dr. and staff. I am waiting to hear about my results in a few weeks. I will gladly let you know how it goes if you like. I am pretty encouraged at this point. ANd yes... $$ pricey, paid $325 just for first visit. Like many have said though, if I can get my health back- I am gonna try it as I have tried almost everything else!
    I will keep you posted?? If you want. Betty / Karen
  4. amymb74

    amymb74 New Member

    cover any part of treatment at these clinics? I was thinking of checking out the one in CT as I am without a doc right now. Amy
  5. LISALOO

    LISALOO New Member

    I go to this clinic, I'm worse, but I'm in the minority. But at least I know what's wrong with me and what isn't. The testing has been worth it. Part of my problem is that I'm allergic to so much stuff.
  6. pawprints

    pawprints New Member

    Hang in there. I know you share the same IC diagnosis. I had to cut back on the treatments because of that allergy, but will slowly add things back.

    Are you allergic to all the treatments? What diagnosis did they give you?
  7. elsa

    elsa New Member

    My treatment plan mirrored the FFC'c almost to the letter and I am in remission.

    I did not "hit it" as aggressively as the FFC's did/do, but I was the one having to map out my plan after research and then put together the best possible healthcare professionals I could find to help me accomplish it.

    That took alot of time to get done ... especially since I was very sick with both CFS/FMS at the time .... you know ... horribly exhausted, sleepy, painful, "brain stupid" etc..

    These clinic do not file insurance for you but will supply the necessary paperwork for you so you can file a claim on your own. Kind of like the days of old.

    Most have posted a 60% to 80% reimbursement from their insurance carriers as an out-of-network provider.

    Most of my healthcare team did not take insurance either. It is because the treatments that seem to be working the best for us are not listed as "must haves" on insurance's treatment protocols.

    Also, insurance companies have not quite figured out if these illnesses are "for real" yet .... makes it tough to get the kind of treatment you most likely will benefit from.

    Anyway, wanted to let you know that the protocols the FFC use are not "out of left feild" but are very cutting edge and current and effective.

    With the help of many of the FFC's patients who have very generously posted everything about their experiences I have discovered that I have actually spent MORE with my "team" of doctors then the FFC patients are spending at these clinics. Amazing!

    My sister is a Dallas FFC patient for bio-id hormone therapy .... she doesn't have fibro ... just wanted their HRT treatment program. Through her I have a really good understanding of what occurs there.

    Look up Mikie's posts ... She went throught the entire heperin injection/antibiotic/anti-viral/immune building process that many of the FFC patients are doing.

    She did this BEFORE the FFC clinics openned their doors for business.

    For that matter, most of my treatment occurred prior to my ever having heard of the clinics as well.

    I mention these things because there has been a bit of wrong information floating around about these clinics. What cannot be disputed is my remission, Mikie's remission (both non-FFC patients) as well as several FFC patient's remission from the "early" days.

    You can find them towards the back of the FFC (or fibromyalgia and fatigue centers) posts that have been made. There is also Lynn ... Not certain of her user name who is in remission, or very close to, .... She's an Atlanta FFC patient and seems to have gotten her life back ... so to speak.

    Go back to like December, 2004 and you can start reading about their experiences.

    There was one lady whose poor family was sick. Her username is "Sarasmom". Unless I am remembering incorrectly, both her children (and maybe herself too) had lymes disease. They are all better.

    Look up wishingonastar too.

    I hope this helps you some. Nothing works for all CFS/FMS patients, which we all know and marvel at, LOL! But this can be a good plan to follow.

    I posted recently on how to accomplish the FFC treatment protocol on a bit of a budget ... how to still be one of their patients, but spend less money ... or at least spread it out over time.

    I cannot remember the poster's exact username spelling, but she is living in France at the moment and has posted often lately.

    Good luck to you. I am one of those who has decided to stick around as much as possible even though remission has arrived and I'm feeling much better.

    This board was my saving grace, my teacher, my support group and my biggest fan. I want the opportunity to maybe help some of us who may be just starting out ....

    The chance to pass on what I learned from members who came before me makes me feel like I am contributing back to this wonderful community.

    Take care,

    Elsa
  8. LISALOO

    LISALOO New Member

    They told me that I had CFS and Fibro (don't really have any pain now though, but that wasn't a problem). I also had no immune system, low thyroid (allergic to meds, even iodine), low hormones. Yeast, which I've finished treating. They didn't find any of the usual viruses or bacteria, which could be why I'm not getting better.

    Did your allergies get better on their own, or did you contribute it to something?[This Message was Edited on 01/25/2006]
  9. pawprints

    pawprints New Member

    Elsa:
    Thank you for staying on the board and sharing your information even though you are feeling well. It means so much to hear how others have recovered some quality of life.

    Jill:
    I think the best thing the FFC offers is their comprehensive testing. Even if you can't afford all the treatments at the same time, at least you have some guidelines to work with. You can go slow depending on your finances.

    Lisa:
    I still have allergies and am trying to work through those. I was not allergic to iodine and do take thryoid medicine, but haven't been able to get up on my T3 dose because I'm so sensitive.

    I remember someone posting about one FFC center who had their patients do a trial of Heparin first and then test for the viruses/bacteria. I may not be remembering this information correctly. I would try to speak to the doctor there and see if they can retest this way or perhaps do some other tests to find out why you have no immune system. So, if your NK cells are low ...what is causing it?

    Just trying to help you think. Did they test you for heavy metals?

    Good luck.
    [This Message was Edited on 01/25/2006]
    [This Message was Edited on 01/25/2006]
  10. hopeful4

    hopeful4 New Member

    Hi Jill,
    Are you referring to the Fibromyalgia and Fatigue Center? Just wanted to clarify.

    I started my treatment there in March '05 in Cleveland. With their comprehensive testing I was diagnosed with many things that no other doctors had ever looked for. Low thyroid (T3/T4), low in all hormones, extremely low NK cells, high RNase, mycoplasma, echovirus.

    After not improving on their protocol tested again for Lyme Disease, came up positive (switched to Seattle after they opened). No other doctor in 5 years had ever suggested or tested for Lyme until I went to FFC.

    Medicare is my primary insurance and they have paid for all of the labs. My secondary insurance pays for most of the prescription meds. Supplements are out of pocket as are the office visits.

    Private insurance may pay for your care there, but you will have to check.

    To find out more about people's experiences, do a search at this forum for FFC.

    Best wishes in finding the help and care that you need.
    Hopeful4

  11. chopindog

    chopindog New Member

    If medicaid pays for some of the labs. Anyone else out there with medicaid who has gone to FFC?
  12. wishingonastar

    wishingonastar New Member

    I encourage you to look back to my posts beginning in December, 2004 when I first began treatment at the Cleveland FFC.

    I have made tremendous progress and am back to living my life beautifully now! I have gone from totally housebound to back to fulltime work, single motherhood with my wonderful 11 year old daughter, a new puppy, a new house and a healthy life.

    I cannot say enough about the treatment I received at the Cleveland FFC. Some of their treatments didn't work, but many of them did. Before finding the Cleveland FFC, I went to the world-renowned Cleveland Clinic Hospital System only to be shuffled from doctor to doctor and specialty to specialty and told that it was all in my head...nothing was wrong with me.

    I noticed significant improvement in six months time on the treatments and continued to improve over the next 8 months.

    Please feel free to read my posts and I'd be happy to answer any questions any of you have!

    I wish you all the best of health!

    Many Blessings,
    Wishingonastar
  13. trixxi

    trixxi New Member

    WHAT IS FFC? A CLINIC W/ SPECIALISTS?

    WHAT HAS HELPED YOU?

    I HURT SO BAD RIGHT NOW. I'VE TAKEN 2 PAIN PILLS AND I'M ON THE PAIN PATCH BUT EVERYTIME I BECOME STATIONARY, I CAN'T MOVE MY BODY.

    I HAVE A GENERAL MD THAT IS KNOWLEDGEABLE ABOUT CFIDS/FM AND HE WILL PRETTY MUCH PRESCRIBE OR TRY ANYTHING THAT MIGHT HELP ME. HE IS NO SPECIALIST. HE DOESN'T GIVE ME ANY BS ABOUT MY SYMPTOMS. OR TELL ME IT'S A 'MENTAL PROBLEM'
    I DON'T BELIEVE THESE SPECIALISTS ARE ANY MORE KNOWLEDGEABLE. THERE HAPPENS TO BE A TREMENDOUS MARKET FOR THESE ILLNESSES. I FEEL HAVING TO PAY THESE EXTREME MEDICAL BILLS ARE OUTRAGEOUS.

    I DON'T BELIEVE THESE DOCS/SUPER DUPPER CLINICS CAN HELP ME ANY MORE THAN MY GOOD MD. I'M SUFFERING RIGHT NOW BUT I DON'T THINK ANYONE ELSE HAS HAD TREATMENT THAT STOPS THE PAIN. DO YOU? I AM UNDER UNBELIEVABLE STRESSFUL SITUATIONS RIGHT NOW AND I'M SURE THAT'S MAKING ME MUCH WORSE. W/O ESPECIALLY FAMILY SUPPORT. AND CO-WORKERS....SOME ARE VERY UNDERSTANDING...WHICH I FIND AMAZING.

    WHAT'S HELPED YOU.
  14. elsa

    elsa New Member

    But I am glad you have an understanding doctor.

    Please go back and read my post. I am not a FFC patient. I have however done almost the exact same treatment path that the FFC patients are traveling on.

    I completed most of my treatment plan before I knew the fibro and fatigue centers even existed.

    I am in remission. Was in early remission for a while before crossing over the top of the hill.

    I mentioned my story because so many people seem to have knee jerk reactions to the FFC. My story shows that the treatments are not crockery .... snake oil .... hoodoo or anything else. They are up to the minute integrated treatments for our illnesses.

    I also mentioned another of our members here who is also in remission after fighting long and hard. Her infections and immunity treatments were the same almost to the letter of the FFC's .... She started on her treatment path well before the FFC's came into being.

    I have also spent more then the average FFC patient and 3 out of the 4 doctors on my healthcare tream do not file insurance. That is the nature of healthcare these days. Many healthcare providers are refusing to re-sign contracts with mco. I don't blame them and I enjoy the freedoms and choices afforded me by seeing them.

    I hope you start to feel better soon. If you'e like to see what I have done over that last two years you can put my username in the search bar. Basically, treat the infections and rebuild the immune system, sleep study for definative sleep disorder and then treat it, nutritional deficiencies, balance amino acids (leads to balanced neurotransmitters) and fix the HPA axis ... hormone system that gets completely wacked out due to our illness.

    I also had "quality of life" medications to ensure I had some kind of life during all of this. I still take some of them and I absolutely do maintainance. I realize this illness is never going away, but I am prepared to fight like heck to keep it in remission.

    Take care,

    Elsa
  15. bettydroop

    bettydroop New Member

    I know that these Docs dont take insurance- thats ok to get their care BUT do you need some kind of referral anyway from your primary dr. just to file the claims?

    Elsa????? You mentioned "quality of life medications" could you elaborate???? THANKS!
  16. jillc62

    jillc62 New Member

    Wow!!! Thanks so much for everyone's input on my question. I'm convinced it's worth giving it a try. I've had this far too long (20 years) and I'm sick of being sick, if you know what I mean. Luckily I can work but that's about all I get accomplished.

    Once I start a new job, I'll be heading over there. I'm currently unemployed (without unemployment pay) but I am temping to hold me through. I won't go into details but my new job has been in a hold period since October and that's okay. I just haven't been able to get my one drug since I have no insurance and I'm feeling it.

    Can't wait to go there and get started. Thanks again everyone!

    Jill (Cleveland)