Fibromyalgia and Fatigue Centers, Inc

Discussion in 'Fibromyalgia Main Forum' started by grandmavicki, Apr 10, 2009.

  1. grandmavicki

    grandmavicki New Member

    I have had fibromyalgia for almost 15 years and have seen MD's, acupuncturists, chiropractors, and homeopaths. I have tried numerous medications and natural remedies that help for awhile but don't seen to continue to work or have side effects that are as bad as the fibromyalgia. My symptoms are getting worse in spite of the numerous things that I have tried. I found this site on the internet and was wondering if anyone has gone to one of these clinics. I am looking at the Holtorf Medical Group in Torrance, CA since I live in Southern CA. Like a lot of doctors, they don't take insurance, so this will be out of pocket payment for me. I am getting desperate for help but wonder if what they say on their website is "to good to be true". I would appreciate any feedback!
  2. TigerLilea

    TigerLilea Active Member

    The FFC are very expensive and I haven't heard of anyone getting better. My understanding is that testing and treatment can cost in the neighbourhood of $10,000 US. That is a lot of money.
  3. Empower

    Empower New Member

    I really haven't heard of anyone getting better from them

    Very expensive

    The head guy at my location had serious infractions against him prior to his arrival at FFC
  4. munch1958

    munch1958 Member

    If you don't have a good doc who can run the lab tests the FFC offers you'll be hard pressed to find out what is wrong with you. You will never get to the bottom of your problems until you know what you are dealing with.

    Docs in my rural area don't even want to order a basic blood test let alone all the tests that I got at the FFC. Then of course they chastised me for going out of state forgetting that I came to them FIRST. It's very hard to overcome their attitude that Lyme, CFS and FM are "all in your head."

    The blood test results were invaluable in getting at the root of my problems. (see my profile -- I put all my results in there along with treatment history.) I got a Lyme test which had many positive bands. I did my own research then changed to a LLMD. Then I got 95% better.

    LD was not something I had considered in my search. I was reading CFS and FM websites and never found a thing about Lyme spirochetes being one of the MAJOR causes of this crud. Many want to legitimize CFS and FM as separate illnesses but they are NOT a disease. They are syndromes or a collection of symptoms. Yes, there is SOMETHING wrong but in my mind CFS and FM are an incomplete diagnosis. Until you know what the actual problem is at the top of the symptom pryamid you just can't fix it.


    The FFCs have an on site Quest phlebotomist so they will bill Medicare for the lab portion. I gave her my insurance card before they drew blood but we did get some bills that they wouldn't cover as some of it was experimental (candida and R-Nase-L).

    I tried a few IVs which helped but not on a long term basis. If you have gut issues and are not eating or absorbing nutrients there is a lot of nutrition in those IVs. We sometimes can't absorb all the things we need because of the Big-D, IBS, or gut dysbiosis. The supplements they sell are much cheaper elsewhere.

    I've got an old post here on all of the labs that they ran. I'll email it to you if you wish to contact me on my AOL account .... illinoislyme

    Maybe you can find a doc to run the labs then take the results to someone else for treatment depending on what they find?

    BILLCAMO New Member

    The good and "honest" Drs. that have been with FFC have left and opened their own practices because of their ethics. Many , but not all , have helped people much more with less cost. (I don't have a list of the good ones....)

    IMHO , FFC seems to be mainly a "money maker" for someone or some group of investors.............. I've never heard of one person they "cured" or helped much for very long......I do have some friends that spent a lot of money on them though......

    Blessings ,

  6. j_guinn

    j_guinn New Member

    I have been searching every forum I can find for info on FFC, because their protocols (developed by Dr. Teitlebaum) seem to make sense to me -- I'm an RN and am sick & tired big medicine & big pharma owning the world. I want someone to actually test & treat me, not just throw another pain med or antidepressant at me to ge me out of their office.

    BILLCAMO says: "The good and "honest" Drs. that have been with FFC have left and opened their own practices because of their ethics. Many , but not all , have helped people much more with less cost. (I don't have a list of the good ones....)"

    Here's my dilemma -- if the good & honest docs are gone (presumably leaving only the quacks and crooks), running their own practices, but you don't know who they are, how am I supposed to find them, and how do you really know this is true?????

    I don't mean to be argumentative, but I'm just so frustrated.

  7. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    I did FFC. I was desperate. I am glad I did. Yes, it was expensive. But I was able to get my insurance to pay for it after the fact at 80%, I think. I got their approval for ten visits within so many months. One of the things that helped is that I called the insurance company asking them to tell me a doctor in my area on their list that treats CFS. The insurance company didn't know of one.

    Tests they give are very helpful. I don't know if I would do the IVs again. I see them as a boost and not necessary to the long-term treatment. They give a push in the beginning. But considering the cost, and the fact they made me nauseated, I don't know if I would recommend them. I felt my doctor was ethical. Yes, he thought highly of some of their supplements, but he was more concerned with my getting better. Generally speaking, you can get very similar supplements cheaper elsewhere.

    I have made improvement over the last three years. And I attribute a large part of it to my treatment, based on their thorough tests, that I received from FFC. But I can't be sure that I would not have seen improvement anyway.

    I don't see them any more. I know what to do and I found a local doctor who will work with me. She isn't very knowledgeable, of CFs, but she is very good with hormones, which is a major part of CFS. Since I know the supplements I need now, and the doc I now see is willing to continue the meds I had been taking, I don't see the need to go back to FFC. Besides, it is a three-hour drive for me.

    So it would depend on desperate a person is as to whether I would recommend them. I am happy I went.

    But I have since seen that eliminating stress, eliminating caffeine and reducing sugar, taking rest periods regularly during the day are the things I can do that have the biggest impact.


  8. hannahfaid

    hannahfaid New Member

    I went to the FFC in Fort Worth TX... A LOT of money and no improvement.. They bled me with IV's and constant bloodwork. They diagnosed me with CFS and not FM... I got out of there and saw a dr that used to be with them (left because he did not agree with their program) and he diagnosed me with FM.... as far as I can tell , FFC treats everyone the same.. They have a cookie cutter treatment plan and not necessarily individualized treatment..
    I think I spent 7000.00 in 4 months there
    If I were you Id look for a dr that treats fm.. If you need to get the extensive bloodwork and a diagnoses, FFC is ok (they do a thorough lab)...Just not long term in my opinion
    Best of luck hon

  9. PVLady

    PVLady New Member

    A fews years ago I went to see Dr. Holtorf and wound up seeing the nurse practitioner, Dee Dee I believe. She was very nice. Yes they ordered more bloodwork than I've ever had at one time! The supplements I purchased all made me sick - I have a very sensitive stomach.

    I guess the result for me was not good. I can't tolerate supplements and my regular pain doctor was so against the IV's. He felt they were very dangerous. I cannot afford it anyway now

    I know some people have felt they were helped and I am glad for them. Later I had my own doctor run a test to Espstein Barr Virus and discovered the result was 8000 when the lab value normal was below 80! By the way, the lab tried to charge me $3,500 for that test. I think the doctor's office miscoded the paperwork.

    Since that result I have felt with that much virus in my system -I just have to really take care of myself, get enough rest etc. and hope my body does whatever it can to help.
  10. jms1234

    jms1234 New Member

    There is no real medical evidence to support any of the fibro tests they do or many of the treatments.

    For example, they provide vitamin infusions at high costs. Read this abstract about very recent tests on such infusions.

    They show no benefit over placebo. In addition, this article is one of the few published, and was only published recently. FFC have offered those treatments for years with no real study on the effectiveness of these things.

    Also, they test for lots of other things like fungal (candida) infections, and various viral infections. If you do your own research on medical literature (, you will see that there is no research supporting their treatments. In my opinion, they are a scam.

    If you or someone you know has been ripped off, or even harmed by inappropriate narcotic prescriptions here, you should report it here and to your medical board.
    [This Message was Edited on 01/23/2010]
  11. pumkinhead

    pumkinhead New Member

    We spent thousands of dollars on different treatments. It did not help me one bit except i lost alot of weight but i felt worse would not recommend it. I wish i had the money i spent.

    Was charged $950. for the doctors letter for my disability case and the judge thru it out after some negative comments about it. Fortunately i won my case based on my gp letter/files at no charge well maybe the copying cost.
  12. Manwithfibro

    Manwithfibro New Member

    They charge something like $7000 just to get in the door and I have not met one person helped.
    Lyme doctors on the other hand, have helped alot with our condition. I have met them. I have heard of people in wheelchairs who can now walk. I know completely disabled people who now hold a part time job. Lyme coupled with toxins is the problem. The IDSA wants to shut it down because they have financial interests tied to insurance and vaccines. See the movie UNDER OUR SKIN. My own LLMD thinks FFC is a fraud.

    Good luck.

    p.s. I am tired of hearing of people suffering losing a ton of money to these hucksters who try to steal your life savings. We are already broke enough emotionally, physically and financially.
  13. j_guinn

    j_guinn New Member

    I started with the Ft. Worth Fibromyalgia & Fatigue Center in June 2010. They charged $6000, which covered all doctor appointments, IVs and supplements for one year. My insurance covered the lab work and prescription meds. They offered a guarantee that at the 6-month point, they would refund any of the $6000 not "used up" if you did not have improvement.

    The doctor was very knowledgeable and kind. She listened to my entire history, and asked intellligent questions for clarification. She explained how my thyroid and adrenals and other hormones were inadequate/used up. She prescribed a combination of levothyroxine and armour, and tweaked my estrogen & progesterone, as well as adding cortef.

    I had read a great deal about low dose naltrexone but had not been able to get my local doctor interested enough to even do the research before refusing to prescribe it. The FFC doctor understood the protocol and was happy to provide a Rx (it helped!).

    I visited this clinic, a 6 hour drive away, 6 times in 12 months. I received IVs, energy injections, many many supplements, and, most valuable of all, knowledgeable communication.

    I am better. I'm not "cured", but I'm better. It was worth $6000, especially considering the fact that during the previous year with traditional care covered by insurance, I still had out-of-pocket costs over $20,000 with zero improvement. $6000 for *some* improvement and a great deal more understanding was well worth it.

    Just my thoughts...

    edited to add that at the end of my 12-months of treatment, they presented a total dollar amount of $12,500 which represented the services and products that I had "used" during 12 months, paying only $6000. [This Message was Edited on 06/09/2011]
  14. artwyoming

    artwyoming Member

    I went to the FFC, Inc. clinics in Colorado (Golden and then Lafaytte) in 2010. $7,000 for a year and over $5,000 in blood work. 9 hour drive to get there. And? Complete waste of time and money. Grossman/Frontier was a slick sales pitch and then nothing but chaos for me. Then the FFC was moved to Lafayette. That didn't go much better. Trying to find my medical records and blood test results now. They closed. And I have been fleeced by the great American corporation, that has moved onto new picking grounds.