Fibromyalgia and Fatigue Center Inc??

Discussion in 'Fibromyalgia Main Forum' started by fens3932, Mar 12, 2010.

  1. fens3932

    fens3932 New Member

    Hello! Has anyone ever went to or heard of the fibro and fatigue center inc? I am considering starting going, but there is a payment plan that hooks you in for a year. I wondered if any one had advice.
  2. justjanelle

    justjanelle New Member

    I haven't been to one myself, but there's been a lot of discussion of them on this board over the last several years. You might try putting the name in the Search box to read some about them (providing Search is working this week!).

    Basically, it seems like a lot of people have tried them, everyone finds them very very expensive (thousands of dollars worth) and only a few people have actually found their treatments to help. Some people have been made not only poorer, but worse health-wise.

    Good luck with your decision.

  3. Pebbles730

    Pebbles730 New Member

    I don't think I would be willing to lock myself in for a year payment plan. I would think that if they are confident in their treatment, why would they lock you into payments? My opinion is that bottom line, there is no magical cure, no magical treatment that is going to help all of us. I know it is frustrating to find help with this disease. I saw 6 doctors and then finally ended up back at my GP .
    My advice to you would be to go to a regular doctor. I don't trust these centers. From what I have heard, they bring people in and tell them they will take away their pain and eliminate Fibro. Don't trust anything that seems too good to be true, it usually is.

    Good luck with whatever you decide to do.
  4. TigerLilea

    TigerLilea Active Member

    From what I have heard via the internet, they are very expensive, and I have yet to meet anyone with CFS that has really been helped by them. They might be good for regular fatigue, but considering there isn't a known cure for CFS and FM, they can't perform miracles.
  5. Juloo

    Juloo Member

    I have to say something here. I know that many have been turned off by the FFCS -- either by the cost, the non-insurance filing, specific doctors, etc.

    I started with the FFC in Atlanta (Dr. Bullington) several years ago, probably about 6 months after they opened. It was my choice to go there after I'd pieced together my own treatment with several other care givers, both traditional and alternative, over the several years prior to that. So when I decided to go to the FFC, I went as an extremely informed director of my own health care and history. Yes, the testing was extensive and expensive, although I did bring a lot of information of past testing into the process. Dr. Bullington was able to consolidate all the different treatment areas and move me forward with areas that I'd not addressed.

    Because I am considered on 'maintenance' now, I do a phone appointment a couple of times a year, and try to get up there once a year (it's a six-hour drive for me). Every appointment, patients fill out a questionnaire, and it has been interesting for me to see the difference in my answers over this length of time. I consider myself NOT cured, but certainly managing my CFS/FM. When the economy supports it, I am comfortable working part-time, and I don't do day naps much anymore.

    Although I understand the FFC sells supplements through their web site, I have not felt pressured to purchase them.

    Again, I went into this with my eyes open, and I have gotten what I needed and continue my as-needed relationship with them. But I didn't expect to become 100% cured or any kind of miracle. I've been dealing with this way too long to think I'm going to get out of it that easily.
  6. arizona137

    arizona137 New Member

    Look at my post on this subject. I went in very knowledgeable and was mistreated and abused by that particular Center. I suffered a heart attack and am in severe cardiac heart failure from their care. TOO MANY HORMONES pushed me into a heart attack.
  7. munch1958

    munch1958 Member

    But skip their treatment.

    The IVs are only temporary and they charge about double for their supplements over what you kind find on the web.

    I was a patient at the Detroit FFC for about 9 months in 2006. I kept a running diary in my profile of things as I went along. There is a list of the lab tests they did on me (and my results) in my profile too.

    It is very difficult to get any doctor to run tests on us simply because our usual labs like CBC (complete blood count), CMP (complete metabolic profile) and UA (urinalysis) are NORMAL. This makes them think there is nothing WRONG according to standards of patient care.

    It's hard for the doctors to justify running tests just for "fatigue." They simply don't understand that this is not fatigue but complete and utter EXHAUSTION.

    If you have a doctor that you can work with in your area simply try to get the doctor to run as many of those tests mentioned in my profile as you can. Also Google other patient message boards because others have also written things up. I found out about FFC on a GWI vets website.

    The FFC was great in the beginning when I was responding to treatment but they couldn't figure out some of the most basic things. I do think the doctor should have known about Fibro and Fatigue. That is their name and what they specialize in so I thought the doctor should have been more knowledgeable. She was new to the clinic and the illness.

    Once I had copies of my labs, I could research my results online and also find the best doctors that I could specific to my problems. I was low in many basic vitamins like B12 and D which points to leaky gut or absorption issues.

    The FFC doctor changed my DHEA from regular to 7-Keto-DHEA which plain does NOT work. My current doctor (from the Co-Cure doctor list here) agrees that 7-Keto doesn't work for people with adrenal and thyroid issues. If the adrenals are not fixed first then the thyroid fix doesn't work. This was the case with me.

    Then 4 months after being on the 7-Keto I crashed and the FFC doctor couldn't figure anything out other than come back for more IVs at $150 - $300 plus her office visit. I was going through my notes when I realized a pattern to my illness. For any change in adrenal hormones it takes about 4 months for my body to respond.

    I didn't agree with the direction the FFC doctor wanted me to take which was more supplements and more IVs. I thought my low IGF-1 status meant that I was deficient in growth hormone which can be a common cause of fibro according to Dr Google.

    I went to a pediatric endocrinologist who specializes in HGH therapy. I flunked the stim test for HGH release. Now I get my HGH covered by my insurance. The FFC doctor didn't think I should do shots everyday at home. So her prejudice about this caused me to suffer a lot longer than I needed to have suffered. About a year after going to the FFC, I had 6 spine fractures. Had I been put on HGH a few years sooner (HGH builds bone and muscle) I think those could have been avoided.

    It was clear to me that I had Lyme disease and most likely co-infections. The Detroit FFC doctor told me I did not have Lyme but I found out later from a Lyme disease support group that patients are not even being sent there for testing because this doctor has issues treating Lyme patients. There have been many complaints about failure to diagnose and treat Lyme to the state's support group.

    It was only after I dug out my tests and figured out that my supposedly negative test was very suspicious for Lyme disease. I had many Lyme specific bands on the test. Those would not have been IND or POSITIVE unless I had Lyme. I also got my medical records for a 3 week 3 hospital stay where I found a notation made by my pulmnologist where I had a rash and mental status changes after a bug bite. He wanted to order testing for Lyme disease way back in 2001.

    It was a lot of work to play detective and figure out my labs and find the best doctors for me. I am about 98% better now. I no longer have fatigue or muscle pain. I no longer have many of my original symptoms.
  8. pumkinhead

    pumkinhead New Member

    I went to the Seattle clinic and it was a total rip off. I was stupid/desperate - cost me thousands. Nothing worked for me. After a year i quit sicker than ever. I want my money back but untill someone starts a class action law suit it will never happen.

  9. SnooZQ

    SnooZQ New Member

    From Fatigued to Fantastic by Jacob Teitelbaum as well as Pain Free 1 - 2 - 3 by the same author. Teitelbaum was (not sure if he still is) at one time medical director of FFC. You may be able to borrow these books from your local public library, or from another public library through ILL (inter-library loan).

    You can try some of the supp suggestions on your own, if you wish, at fairly low cost (relative to FFC charges). The hormonal testing & supplementation is helpful to some with fibro/CFS -- although there have been issues for some people.

    You may also be able to get certain hormone tests covered by your insurance, assuming you have coverage, if your PHCP is sympathetic & if when you ask you are ready to give a good scientific/medical reason for the tests you are asking for. No guarantees, but there are some allopathic docs who can be helpful. Even if only one or two tests get covered, your overall costs are less. And if some easily treated abnormality is discovered (say, low testosterone), then you can also get treatment paid for by your insurance in most cases.

    I saved a lot of $$$ by reading the books & working with a naturopath, who did the same testing & Rxd a number of hormones that were helpful. FFC tends to have a cut & dried one size fits all approach that is spendy. By working intelligently with a naturopath I was able to cut out some of the uneccessary expense of "one-size" testing -- for certain things that obviously did not apply, & substitute testing for stuff beyond "one-size," peculiar to me, that did bear on my pain & fatigue.

    IMO treatment success often hinges on patient awareness & communication with healthcare providers, in addition to provider competency. If you read reviews of FFC, some docs are much more highly thought of by many patients than other docs.

    Best wishes.

  10. zipk

    zipk New Member

    Please let me know who your co-cure doc is --- in IL? THanks,

  11. arizona137

    arizona137 New Member

    Yes, that is what happened to me at the Pittsburgh Fibro and Fatigue Center. I was given way too much medication. Dr. Cheney says it was blatant medical malpractice. Read my other posts and it will give you more insight.

  12. aftermath

    aftermath New Member

    Ripoff at best, dangerous at most.
  13. munch1958

    munch1958 Member

    I found Dr Edelberg from the Co-cure list -- He's got about 1,500 FM patients -- I think?!
  14. loto

    loto Member

    I have to agree with you.

    A year payment plan sounds like a gimmick to me. Sorry, that's my opinion! Anytime someone wants you to make payments for a certain amount of time just sounds wary to me.

    So, does this place think they will have you cured in a year's time? If you think about it that way, it sounds ridiculous!

    Don't mean to offend anyone, but it sounds 'NOT RIGHT" to me.


    LISALOO New Member

    Good to know I have no viral issues, but $10,000 gone, no improvement, a waste of my time!

    I had a dr ask me if I was lisaloo, they must trove the boards to see if we're badmouthing them.

    Same Lyme issue with Detroit as Munch, put me on drugs, then got a call saying no you don't, now I realize I probably do accoring to several LLMD's.

    They overmedicated me, screwed with my hormones overmuch. They have a plan that's the same for every person, not right.
    [This Message was Edited on 03/23/2010]
  16. JLH

    JLH New Member

    I don't know anyone personally who has been there, but like the others have said, I have read a lot here on people going, not being satisfied, and that it was super expensive and not worth the money.

    A good internal medicine doc, rheumatologist, or your own doc can do testing for you -- make sure the doc you choose is familiar with fibro.

    Like others have said ....Read up on the centers first, ask them if the give recommendations on their treatments, etc.

    In my personal opinion, I do not think I would go to a place that was so expensive that they offer a payment plan! I would think it was a racket, or a joke! If you have medical insurance, your own doctor(s) can perform the same tests and blood work and it be mostly paid for by your insurance. I went to some "fibro specialist" where I had to drive 3 hrs to get there. He told me the exact same stuff that my primary doc, an internal medicine doc, did! I never went back. He didn't even seem concerned or interested about me and all my problems. My own doc really cares.
  17. herbqueen

    herbqueen New Member

    Munch were you able to come off of abx-or are you on maintenances doses? Also did you have any neuro problems that were resolved?
  18. chaps

    chaps New Member

    I went there. The doctor ordered a DMSA challenge test while my mouth is still full of amalgam fillings. I filled the scrip, but didn't use it after researching it myself. I found out that taking a DMSA challenge could threaten my life with all the fillings I have!

    She also prescribed hormones, testosterone and thyroid. I found out later that by taking testosterone, your body's receptors determine that your testes don't need to produce it any more so your testes stop it. Then when you stop using the cream, you end up with less testosterone than before!! Same thing with thyroid hormone, only it takes longer.

    For me, it seems they try to make you feel better treating symptoms without getting to the source of the problems. Now that I know more about Lyme disease, looking at my bloodwork, they should have looked into Lyme with me. They never uttered the word.

    I agree with the advice to go there for the testing, but take the results somewhere else and do your own research. With CFS/FM, doing your own research and being your OWN advocate is of paramount importance. If you just depend on what the doctors say and let them lead you around by the nose, you're in trouble.

    Support groups and forums are good too. They can be a bit depressing at times if you're like me because I hate to hear of other peoples' suffering. I often feel so bad for them (particularly those worse off than myself) that it gets me down. But on forums you can sometimes learn of new treatments or learn about things that don't work, so it's good too stay abreast. You did the right thing by asking the question on the forum.

    Good luck to you.
  19. TigerLilea

    TigerLilea Active Member

    Be careful taking thyroid meds. Someone on this board was started on thyroid meds by the FFC and she ended up having a heart attack. Thyroid meds are serious things and if you don't need them, you shouldn't be on them. It seems that everyone who goes to FFC gets put on them regardless of what their test results were. I'd be very cautious if I were you. You might want to get another doctor not connected with the FFC to look over your test results and see if they come to the same conclusions as the FFC docs.
  20. munch1958

    munch1958 Member

    I've copied the email that they sent to me below. The first one arrived right before April Fool's day. I thought it was a huge joke since they sent me a 2 page letter telling me to stop taking Abx. Now it says that I need a full course of them! I've been on them for close to 4 years now. I believe this is why I'm 99.5% better. No way would I ever go back there!

    ============== FFC email ===============

    Dear Munch,

    Since we were last in contact we have helped thousands of patients — just like you — with Fibromyalgia, Chronic Fatigue and other auto-immune-based conditions feel 65% better in as little as four months.

    We have created a treatment program called Road to Wellness that we are confident can help you stop suffering illness, pain and fatigue. How confident are we?

    We GUARANTEE that after 6 months, if you don't feel better, we'll reimburse the balance of your Road to Wellness membership fee.

    We are hopeful and think you will be too.

    Five years of learning and the clinical results of a statistical study based on over 17,000 patients tell us that just like other patients, we can probably make you feel better too.

    What we learned is that the treatment we offer is highly effective when our patients take a total commitment approach. What that means is that you only get better when you’re using ALL of the recommended therapies together as directed by your physician.

    It’s like this: you have strep-throat. You take ibuprofen and throat lozenges. You’d feel a little better but you’d never beat the infection. You need those plus antibiotics. And not just three days of antibiotics - though you’d feel better after those three days. You need a complete course of antibiotics.

    So why didn’t that happen when you inquired about our services in the past?

    It was the concern for your costs. Our doctors have always made a full set of treatment recommendations, but the choice of how closely they are followed is always yours.

    We wanted to help, but we didn’t want to push our patients financially.

    Financial considerations may have impacted your choices and decisions about treatments in the past. They often do.

    Now, you won’t have to face those choices when you become a Road to Wellness member.

    The Road to Wellness integrated-treatment program is designed to provide one consistent price for the full, integrated treatment program. We’ve made it simple! The program includes: appointments, therapies (injections, IVs, & nutraceutical supplements) as ordered by your physician and discounts on all ITC Pharmacy compounded prescriptions.

    Please watch this short video for information about our treatment guarantee. Or call 1-866-443-4276 to schedule a complimentary (yes, that’s free) consultation with one of our doctors.

    Wishing you all the best,

    Bob Baurys
    FFC Founder, CEO and a Patient
    16415 Addison Road, Suite 600
    Addison, TX 75001