FFC's Comment and help

Discussion in 'Fibromyalgia Main Forum' started by wrthster, Apr 5, 2009.

  1. wrthster

    wrthster New Member

    Hi all,

    I have been giving a lot of thought to this almost since the centers opened. If I am not mistaken the founder, Titelbaum and Holtoff before him all at one time suffered from some sort of the disease.

    Quite frankly it amazes me with a company that size and money that they do not accept any time of insurance let alone have the courtesy of filing it for you. I mean they have to know unless they are complete idiots that most of us cannot afford that kind of money. Many of us are on SSDI or are struggling to hold down a job and barely make ends meet.

    I saw Dr. Enlander once and whether you like him or not his office worked hard, took the insurnace, ran all of the tests. Whats makes them better then him?

    Bottom line it is an absolute disgrace and quite honestly I feel the same with Dr. Guyer and others like that. It is praying on people who deathly sick, have almost no support and cannot afford.

    I really feel we as a group need to organize better like the AIDS community and try to curb this as best as we can. When Aids patient are being treated the ID docs take insurance. That simple.

    Perhaps in numbers between us and some of the other support sites we can try to boycot until they change there policy. That would put them out of business if they don't change the policies. I would like to here feedback and if anyone would be willing to try to do something like this????

    Appreciate your feedback and comments. Thanks again.

  2. gapsych

    gapsych New Member

    I agree with you. I think the fact that these places do not take insurance is a big red flag. These places charge enormous fees which makes it unfeasable for a lot of people to get these treatments.

    I have no idea how effective the FFCs are but there are doctor's treating our DDs who do take insurance. I have also heard that many of these centers try to sell you their products.

    I would like to hear of others experiences with one of the FFCs.

    You bring up some good points.


    [This Message was Edited on 04/06/2009]
  3. kbak

    kbak Member

    I can do nothing but agree with you.

  4. SnooZQ

    SnooZQ New Member

    here in the USA is NOT just a collaboration between patients & their docs.

    Docs are governed by specialty boards that set "standard of care" for various diseases. There is a SOC for various aspects of breast cancer, AIDS, ear infections -- whatever.

    What is accepted standard of care for Fibro/CFS? Antidepressants, Lyrica, maybe antivirals in a few cases of CFS.

    Insurance companies determine what will be paid for, or not. They rarely reimburse for treatment outside of accepted standard of care.

    When you choose to visit a doc or clinic that practices "on the cutting edge" outside of SOC, you take a risk that insurance will not cover these tests & services. Some people (though not all) who have not been helped by accepted SOC, are helped by FFC & the other maverick docs.

    IMO, the majority of patients with these DD actually DO boycott the specialty providers. Only those with the "means" can try out less-researched treatments which may be of benefit.

    If you had AIDS and went to one of the maverick docs serving that group of patients, you would likely run into the same problems with insurance billing.

    Perhaps the more effective action would be to work for fair, equitable, reasonable healthcare coverage.

    Where these docs are overcharging or skimming off of lab tests & high-priced treatments, they deserve the same oversight as other healthcare providers.

    Best wishes
    [This Message was Edited on 04/06/2009]
  5. munch1958

    munch1958 Member

    Dr Teitelbauum had FM and Dr Holtorf had CFS. The owner of the FFC chain is Bob Baurys. He had FM but Dr Holtorf cured him. Bob wanted to take the cure to the people. He sold the chain shortly after I was a patient there in 2006. He wanted to open up a chain of clinics devoted to autism or ADHD (something like that) then he bought the FFC clinics back.

    We made 7 trips to the Detroit FFC. I was allergic to some of the ingredients in their IVs so I didn't get more than a few of those. IMHO, the effects are temporary and not likely to cure anyone.

    The only costs that were out of pocket were the supplements (those you can buy cheaper from other sources) and the doctors office fee. The FFC didn't have a problem with giving me the name of a supplement so I could buy elsewhere.

    To be fair, you do see the doctor for 1.5 - 2.0 hours. Not many doctors spend this amount of time with one patient. Usually, they are seeing 6 - 9 patients an hour. You get your 10 min visit and they don't go very in-depth.

    The testing that they do was covered by my insurance because they use Quest Labs. I gave the lab tech my card so I didn't have to pay cash up front for labs.

    They have an on-site phlebotomist at every FFC location. It's very difficult to persuade a doctor to run $10K worth of labs. I would advise anyone with CFS/FM to have this type of extensive testing done. They uncovered a lot of issues in my case. Most of what they found is in my profile.

    My biggest objection with the Detroit FFC is that Dr Holtorf has info on his site about how to diagnose Lyme disease and the doctor I saw did something different. According to Dr Holtorf, I am POSITVE 2 different ways but the doc in Detroit sent me a 2 page letter outlining the reasons why she thought I didn't have Lyme. Why didn't Dr Holtorf's info trickle down to the clinic doc. Dr H was the medical director when I was a patient there.

    They did identify that I had hypercoagulation as an issue. Vitamin D and B12 deficiencies. My infections were candida, CPN, EBV and I had many positive bands on both the Quest and Igenex Western Blot test for Lyme. I feel that I was able to target my specific problems and find the correct treatment by getting their testing done.

    The standard of care set by the IDSA or Infectious Disease Society of America is written with insurance company bias. Many of the authors get paid to consult for Big Insurance and/or Big Pharma. They should not be allowed to write policy if they own patents for test kits and vaccines.

    The Lyme treatment guidelines don't acknowledge chronic Lyme as an illness. They know darn well that syphilis has a chronic form (stage 3) but they claim the Lyme spirochete does not. They used different primers to find Borrelia in ticks but when they did their long term Abx study they used other primers plus they excluded people who tested positive by PCR from their studies to force the conclusion that reinforced what they wanted us all to believe.

    The FFC clinic manager states the reason they don't accept insurance is that they don't want to have insurance companies digging into their treatment. Plus they do some treatments that are not available anywhere else. Their IV's are propriatary. Many docs are heading in this direction especially when the treatments are not exactly FDA approved.

    The only FDA med that's approved for FM is Lyrica. About 6 out of 10 people can't take Lyrica due to side effects so where does that leave the patient?

  6. wendyo

    wendyo New Member

    you raise some good points. looking at your profile I am impressed with all the supplements and meds you take, seems like could be hard to know what is doing what sometimes.
    Do you or others know if it makes much difference which ffc you go to? Getting the evaluation sounds worth it, anyone know if the one in Seattle as good as any?