Discussion in 'Fibromyalgia Main Forum' started by busybusymom, Sep 16, 2005.

  1. busybusymom

    busybusymom New Member

    Has anyone gone through the Fibro and Fatigue Center and been helped by it? What did you think of their program? Did you get reimbursed by your insurance any portion? Was it worth it?

    I'm looking into it - the facility in Torrance. I just don't want to be rooked by a "scam" of any sort. I am feeling very desperate for help. I have been feeling like like such crud this past week, barely able to get around, after having about 2-1/2 better weeks with IVIG infusion. Unfortunately, insurance didn't reimburse much, and not sure if I can afford to have it done again. Also, I want a "permanent" fix, not just temporary.

    Any helpful insights to this facility would be greatly appreciated. I've already checked their website, but need some "real life" testimonials!!

  2. pjsmonster

    pjsmonster New Member

    If you do a search on FFC here you will find many posts and some good results from people who are going to various FFC centers.
    I will be going back to the one in Pittsburgh in 1.5 weeks for follow-up and test results from my first visit I just had with them. I was impressed overall with my first visit and look forward to working with them

  3. HppeandMe

    HppeandMe New Member

    Hi there-

    I go to the FFC and it is very expensive. I have been going for a little over three months. The amount of medication I am taking is crazy. I take about 50 or more pills a day. I always feel sick to my stomach from the pills. Everyone gets diagnosed with several different ailments. I have not read anyone who hasn't. Furthermore, everybody or a majority of the people get diagnosed with Hypothyroidism. They do ask that you buy several of their supplements. The center I go to has no statistics on people getting better.They also want you to do IV's once a week that are extremely expensive. You can tell them if you don't want to do the IV's. I did. I found out that with their protocol the IV's should not make a difference, but perhaps they would for you. Ok so thats my skeptical side.

    On the other side the staff is extremely pleasant and want to help. The only one I am skeptical about is the guy who started it. I have been feeling better the past couple of weeks for the first time but I attribute that to the sleep medicine I am now on that I started taking 3 weeks ago. I think once it wears off I would feel bad again.

    I really don't know where we should all turn.

    Good Luck and let us all know what happens!!
  4. HppeandMe

    HppeandMe New Member

    My insurance does reimburse me for 80% but just for the visits. They do not reimburse me for the supplements or IVs.
  5. springrose22

    springrose22 New Member

    You know, the people who work at these FFC's are more than likely really trying to help. All of the research that I have done states that the best thing for CFS is to slow down and accept that your illness is chronic, and maybe, slowly, you will get better. For fibro, it is much the same, acceptance that you have a chronic illness, but conversely you should try to keep moving. Soothing baths, gentle massages, and supportive people around will do just as much for you and not be nearly as hard on the pocketbook!

    What is IVIG? Marie
  6. busybusymom

    busybusymom New Member

    Bump, bump

    Hppeandme - What in the world would they be having you take 50 pills for?????!!! What state are you in? I guess this is what I didn't want to hear. I figured they would find something - I already have things on my labs that I know are a given. Please rethink all the pills. Does this include vitamins? What kind of IV infusions?

    Marie - IVIG is intravenous gamma globulin which is a treatment for CFS. I have an extremely hight Epstein Barr titer, and recent labs show an reinfection. I found that it gave me more endurance, but this past week (my last infusion was almost a month ago), I have gone downhill - extreme fatigue, achy, literally NO ENERGY, and depressed because I was doing better for me. It is extremely expensive, though. Look up my posts - I've posted a few about IVIG. It is something to think about, if you can afford it (some insurances pay at least a portion). I had one doctor do it in July; it was all covered because he was a PPO doctor and I have me my out of pocket for the year. My regular NP that I see gave it to me last time - $1000 copay - I was in tears!!! Not sure if I will have it done again.

    Thanks again everyone!!
  7. miss_chronicpain

    miss_chronicpain New Member

    Hi there,

    I have been desparate too. I was just recently diagnosed (1 month ago) and have been prescribed hypnotic antidepressants to help me get restorative sleep, in turn relieving my chronic fibro pain.

    im only 18 and live with my parents and am about to start college the end of this month! im in a horrible state right now and grasping at strings for some HELP!

    My mom did some resarch on this clinic online, found one in our hometown and visited them for some initial questions and such. She said she got a great vibe from the doctor and staff, really making it all about the patient in all ways. the FFC is growing so rapidly all around the country because it really has helped people heal themselves or at least manage the pain significantly!

    I have an apnt. there on this coming monday and i must say im excited to start with doctors who are COMPLETEY AND UTTERLY dedicated to their patients well being. I can keep u informed on what ive learned, done, had done,, etc from this clinic.

    i hope this helped busymom!
  8. sickasadog

    sickasadog New Member

    and from what she said, they have been wonderful in alot of ways, but they are not uniform in what they do, not in the sense of individualizing treatment plans, but some use some labs for some major testing, other's don't,, some emphasize the candida diet, some don't. All I know is that my friend was just diagnosed with chronic lyme disease (as I have too)- she had to press the FFC for a very reliable lyme test, which ultimately came out positive. For some strange reason, the FFC did not seem to think lyme was a big deal and was just part of the whole picture. Well, Lyme is a VERY big deal and before I got my lyme diagnosis, I was thinking about going to the FFC for my previous CFS diagnosis. Based on the way they handled my friend, I am not so sure. My friend is very upset with them about this, but really did like them alot before this happened.

    And again, from what she said, all the FFC's seem to be different and some people are very happy with theirs and a few are not.
  9. ldbgcoleman

    ldbgcoleman New Member

    Please do a search on FFC to get very detailed reports on how those of us who go are doing. Some of those who have gotten much better have dropped of the board. Try searching sarasmom and wishingonastar.

    I have been going snce the begining of May. I was diagnosed with: Hypercoagulaton, Adrenal Fatigue, Low T3, Low NK cell activity and the biggies Mycoplasma and EBV. The only thing that is controversial is the EBV. The tests are done by reputable labs.

    I turned the corner when I started treating the myco and the EBV. I was feeling slightly better but when I strted treating those the effect has been dramatic. Much lower pain levels and tons of energy. This occurred during my 4th month.

    They tell you up front it will be 4-6 months and maybe up to a year. This is all dependeant on what is going on with each individual patient and how severe and long you have had the problems. I have had the pain for over three years and the fatigue a little longer. Pregnancy pushed my over the edge. If you have Lymes it take longer.

    It is the belief that if you treat the underlying causes and get them under control you will get better.

    I was retested for the Adrenal, Hypercoagulation, and thyroid. Everything was improved except the Adrenal but I chose not to take the cortisol and go a different route so I am adjusting my plan and going with the cortisol now. I continue on my treatment plan until Dec. and then we will reasses.

    The costs completely depend on what is going on with you and your insurance benefits. My labs were paid for and 60% of my office visits but not the supplements. I would plan on at least $5000 if you don't have insurance. You can call your plan and ask what they cover. The lab files for you but you have to pay the visits up front and get reimbursed.

    I have given extensive details on all of my visits and you can search my name.

    Also- Cindycor, karatelady, puglover, Jennie update thread and several others.

    Finally I am not taking 50 pills per day more like 15 in the am and another 10 in the pm. Alot of it is things like fish oil, garlic Acidophilous ect...

    I am happy to answer any questions- Lynn

  10. sickasadog

    sickasadog New Member

    which FFC do you go to?? They cant present any stats?? Are they a new one? My friend was going to one in PA i believe.
  11. Mikie

    Mikie Moderator

    Even Dr. Cheney's patients usually do not get "cured." He is probably the leading expert in CFIDS and I have only heard of one patient of his who felt his treatment made her well. I have not heard of any patients of other CFIDS experts who felt they were cured. I'm sure there are some, but I think it's relatively rare.

    It is possible to get much better. I believe it is vital to address the underlying infections before one can begin to heal. It took 2 1/2 years on Doxycycline for me to get the mycoplasma infection under control.

    It has taken about the same amount of time to get my viral infection(s) under control with Famvir, Heparin, and Transfer Factors.

    One needn't go to these clinics if one can find good docs who will treat the various aspects of our illnesses. The thing about the FFC's is that it's one-stop shopping. Also, they do pretty extensive testing which might be overlooked by other docs.

    As y'all know, I have researched and duplicated tests and treatments which I have found online. Overall, I am better than I was more than four years ago. I have been lucky to have docs who worked with me on these treatments.

    It was a good year before the Guai kicked in enough that I was able to do without the Morphine on a regular basis. I've been on it for more than 4 years and my FMS symptoms are about 90 percent reversed. If only the CFIDS were so easy to treat.

    I take about 20 pills and supplements a day. I'm not through with seeking treatment. I plan on seeing an endocrinologist and possibly a neurologist before I am done. The way I am going about my treatments allows them to be covered by my HMO. If a FFC were to move into my covered area, my HMO would act like a PPO and cover 80 percent of what they allow. That would likely end up being about 50 percent coverage.

    Good luck to all who are using the FFC's and please, continue to keep us updated. For the rest of us, we can come pretty close to duplicating the FFC treatment. It just takes finding good docs and doing a lot of the research ourselves.

    Love, Mikie
  12. rileyearl

    rileyearl New Member

    I've started with the FFC near Seattle. I wrote about it in an earlier post. I was really pleased with the whole experience and expect that when I go for the second vist next week, my blood work results will determine a treatment plan.

    I didn't feel any pressure to buy their supplements. The ones I was familiar with already, I bought elsewhere. What they recommended were high quality and have been effective--especially the End Fatigue powder and the B-complex that comes with it. I feel way more energy than I did before. The pain is still bad, but I expect it will improve.

    I was just diagnosed in July, 2005. After reading about different approaches to healing here, I decided it would be smart for me to just bite the bullet and pay for the FFC. It looks like most people spend years and thousands of dollars on different doctors, tests and meds. I'm 52 and have a 4 year old son. I don't have years to look for a way to get better. I figure the cost will probably be less at FFC than elsewhere, just in the amount I would pay in $30 copays over 5 years.

    I take about 25 pills a day right now, plus the vitamin powder. That includes hydrocodone as needed. I think I was taking 12 a day before I started with FFC.

    One other real positive thing about the FFC is that the doctor I saw wasn't afraid to prescribe hydrocodone and ambien. She suggested herbal and other treatmens first for pain and sleep, but readily wrote prescriptions for me when I told her that's what works for me.

    Sorry to be so long winded here. Bad habit!

    Good Luck!

  13. acesk

    acesk New Member

    I went to FCC in Denver (live in Florida so traveled there on free airline ticket!) last fall. I feel much more energetic - this is from thyroid med alone. I used to sleep every time I wasn't at work!

    I don't take the supplements at all - tried all they said for one month and didn't see a difference when I stopped them.

    They now want me to take an antiviral (Famvir) and gave me a script due to Epstein Barr virus coming out in the tests (nothing else showed up besides low thyroid which had never come out in regular doctors tests). I haven't taken the Famvir yet because it gives you side effects (feel like you have the flu for 2 weeks!) and I wonder whether it will help the pain. Anyone have had help from antiviral for pain, not energy????

    Sue in Florida
  14. kbak

    kbak Member

    I go to the FFC in Dever too. I found what really helped my pain level was getting some decent sleep. I just plain could not sleep. Dr. LaBair, (little bear) as she likes to call herself, started me on neurontin and gabatril. I hate taking meds, but for the first time in forever I could sleep.

    The next thing I did was get on this website and read, read, read. I decided that since gabatril was the synthetic of natural GABA, that I would stop the gabatril and substitute GABA. It worked. Then some people recommended DLPA for pain. DLPA is an amino acid that acts as an analgesic. For me DLPA was heaven sent. I get really good pain relief from it. I take 750mg first thing in the morn on an empty stomach. You can take up to 3000mg if nessesary. There have been days where I would, but not often.

    I now only take pain meds if I have a really bad day. I pace myself too. That makes a big difference in my pain level. I'm lucky I don't have to work, or have kids at home. I would be on pain meds if I did. I can't imagine how all those women do it.

    It really is trial and error to find what works best for any of us.

    I don't blame you for not wanting to take the antiviral. Some of those can make you as sick as the illness we're dealing with. Since I'm into naturals, you might want to research Licorice. I take a licorice tincture. Many people with CFS take licorice. it has antiviral properties and helps boosts your adrenal gland for extra energy. You could also check out transfer factor for your EBV.

    Good Luck!

  15. Mikie

    Mikie Moderator

    When I first went on the Famvir, I had a complete, though temporary, remission. Every person reacts differently to meds which kill pathogens. When there is a big killoff, one usually has a Herx reaction. AV's usually do not produce the fluish feeling as the transfer factors do. Sometimes, we have to feel worse to feel better but it sure beats the alternative--a body chronically infected. Good luck.

    Love, Mikie
  16. acesk

    acesk New Member

    Thanks for the replies!

    Sue in Florida
  17. rockgor

    rockgor Well-Known Member

    I've had CFS for 25 years. I am still looking for a magic bullet of some sort, but have pretty much given up any realistic hope of improving.

    I think if a clinic was reallly effective, it would keep records and publish them, advertise them, brag about them, etc. It would have its walls covered w/ testimonials.

    Anyway it's not an option for me. Too expensive. (Unless my investment play pays off. Anybody see who won the Lotto today?)
  18. razorqueen

    razorqueen Member

    the FFC has a website, fibor and fatigue dot com, maybe you could check it out. they do have testimonials. Plus the fact that I think they have only been opened 1-2 yrs.
    Just a thought, maybe if you didn't waste your money on lotto tickets you could save up the money for treatment?

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