FFC: Think Twice

Discussion in 'Fibromyalgia Main Forum' started by 2Bhopeful, Sep 6, 2006.

  1. 2Bhopeful

    2Bhopeful New Member

    This is an open posting to let those considering FFC as an option to really think twice. I have had CFS for 20 years and Fibromyalgia for 6. I had a flare several years ago and had to quit qraduate school and a part-time job. I went to FFC because I saw it as a last resort. I went for seven months, followed innumerable protocols including the anti-viral IV's, all the supplement products they pushed my way, T3, antibiotics, hormones etc. Needless to say after 7 months we spent thousands of dollars and I ended up worse than ever due to rashes, hives, heart palpitations, not being able to keep meds down, and hair loss. (After seeing two other endocrinologists and a dermatologist it was determined that these negative responses were not just herx reactions)

    At any rate my experience has made me very skeptical. For those who have had positive results good for you. . . For those considering FFC as an option I recommend thinking twice.

    In my experince the following has been the most beneficial for me: physical therapy and aquatic therapy to prevent muscle wasting, loss of strength, and prevent weight gain. It also taught me ways to move, stand, bend, sit etc to minimize back strain and pain. I resisted Physical Therapy for a long time questioning it's value and now wish I had started it years ago. A good multi-vitamin like the one offered through pro-health's store. Signing up for the Fibromyalgia Network Newsletters even though there is a annual fee. It is ad free and contains research studies from around the world and patient surveys that rank various meds and therapies etc. I'm still looking for the right combination of pain management meds for me though. Food allergy testing that I had done through med-immune labs. They discovered 21 food sensitivities and although the rotation diet was not easy I have greatly benenfitted from the knowledge I gained from that one test. It is expensive, when I had it done it was $750 but I saw results so it was worth every penny. I can't say enough about the importance of good nutrition! My current goal is to regain the measure of health I had prior to the FFC experience and go from there.

    Best wishes to all of you.
  2. morningsonshine

    morningsonshine New Member

    I know that their has been many that have been helped at the FFC,

    but there is always those who won't be, it's good to here both sides,
    and it sounds like you gave it a real good try.

    I hope you reach your health goal.

    Misty
  3. Mikie

    Mikie Moderator

    That the FCC let you down and actually seems to have made matters worse. I'm glad you have posted this because we need info, positive and negative, on the FFC's. Most people do not get all their care at the FFC covered and it can be very expensive.

    I had such high hopes for the FFC's because they basically follow the treatment regimen which has helped me so much.

    Again, thanks. This is the kind of info we need.

    Love, Mikie
  4. littleleafhopper

    littleleafhopper New Member

    I am currently searching for a direction like most of the individuals on our boards. I have learned after many years of trial and error that for me agressive programs, whether they are alternative or traditional tend to backfire.

    Unfortunately my heart wants to jump in there, be proactive, and Do a program. I've tried many, many, times, spent thousands of dollars on supplements that I've reacted adversely to, and seen countless physicians over the course of years. But my body continues to need a gentle sort of prodding approach.

    Thanks for sharing your story, we are all so different, and yet similar. We just do the best that we can. It seems that each case must be individualized. Hopefully we can find practitioners who will understand and taylor make their treatment programs to suit the patient's needs.

    I'm sorry about your failed attempt. I know how difficult physically, and emotionally those setbacks can be. Here's to your health. Good luck and keep sharing.

    Yours, Lil

  5. ANNXYZ

    ANNXYZ New Member

    I also went to FFC clinic seeking care . The only good thing that came out of it was a clear result on an IGENEX labs test , indicating that my illness is related to lyme disease ( at least in part ) .

    I REALLY hope they ran an IGENEX test on you to rule out lyme , because lyme disease and CFIDS / FM are virtually indistinguishable in MANY RESPECTS . Igenex is the only truly reliable test .

    Thank you for sharing ! I genuinely hope that you are led to something that improves your health significantly .
  6. musikmaker

    musikmaker New Member

    Many times I have thought about going to the FFC but have always stop short. As I have read about others experience with the FFC, it seems to me there method is hit and miss. I haven't been willing to take the chance it could make me worse than I all ready am.

    I realize it has worked for many and I am happy for them. As time passes and the medical communtiy knows more about our disease, I might be willing to try.

    Good luck in regaining your health 2Bhopeful.
  7. jeduanboneis

    jeduanboneis New Member


    Thanks so much for your posting concerning the FFC. I have been seriously contemplating going to Atlanta to be tested to see what exactly I am working with at this point. My thought was to go to get tested and then continue their protocol along with other things that I know to benefit me and find my own niche.

    I am waiting for our new health ins. to become effective and then see where I have options.

    Would seriously like to find out what I have. Do they consider Lyme at the FFC? How and what do they test you for? How do they make their decisions as to what they test you for? I am concerned that the testing anywhere will not be accurate if the virus or bacteria is not active at the time? Many concerns.

    In my opinion I have tried everything that I can possibly do except the Transfer Factor.

    I have been on the Ryfe machine in the early stages of my illness, 23 yrs. ago. I have had IV colloidal silver treatments. Lots of alternative treatments because the mainstream Drs. seem to be clueless, even though they are getting better.

    I am fearful of trying another therapy and being let down again and getting depressed, again.

    I am searching for a treatment center that has some positive results for CFS. I have recently developed FM, but still feel the fatigue is the major player.

    After 23 yrs. I am still very ill. And it is getting very depressing. As you all well know.
  8. littleleafhopper

    littleleafhopper New Member

    Hi 2Bhopeful,

    I posted earlier in response to your story, but realized that perhaps you could answer a question I've been wondering about.

    It's T3 therapy, what did your endocrinologists say about it. My doc has proposed using T3 alone without T4, (I have hoshimotos), and I am questioning the wisdom of such a move. It's certainly not standard or widely used as a stand alone hormone. How did the specialists feel about it? I need more information before I decide to try it.

    Currently I take T4 and T3 together. Thanks for any information on the subject you can share.

    Yours,Lil
  9. bigmama2

    bigmama2 New Member

    Thank you for posting your experience. I hope you get better soon.

    I have been to the FFC twice so far. I have mixed feelings about it. The dr. was kind, caring, and took his time and obviouosly didn't think CFS is just some bullcrap excuse. It was almost worth the money just for the fact of seeing a doctor that knows that CFS is real and people who have it aren't just tired mental patients!

    I also feel that the testing was valuable. I learned some important stuff there. Example- I have very low pregnenolone and now I take supplements.

    However some things about my experience were not so great. Although I liked the Dr. I am not thrilled that he has only been there for about one year. (Not sure if he specialized in CFS before coming to work for FFC or not.)

    Also he kinda pushed their supplements which i think can be bought cheaper thru other sources. Also he prescribed thyroid and cortisosl when my testing was did not clearly show that i need them. I feel that they are serious medications that I only want to take after I have tried other things like nutritional supplements (vitamins, minerals, etc.)

    so that has been my experience so far.... I have started a heavy regime of supplements and I wannt to see if that helps , then i will reconsider the thyroid, and cortisol.

    I have not yet decided if I will be going back to FFC. The two visits and testing I had were very expensive, but I did gain some knowledge out of them.

    bigmama2
  10. 2Bhopeful

    2Bhopeful New Member

    Hi Misty,

    Thanks for your words of encouragement. It means a lot to me.

    Jolee
  11. 2Bhopeful

    2Bhopeful New Member

    Hi,

    Thanks for your words of kindness.

    I think one of the reasons some of us don't do too well at FFC is that they try to tackle too much too soon. I don't know about others' experience but I have always been sensitive to medications and a little goes a long way. Perhaps their aggressive approach was just too much for me to handle. At any rate thanks again.

    Best Wishes,
    Jolee
  12. 2Bhopeful

    2Bhopeful New Member

    Hi Lil,

    About T3 and T4. While I was not diagnosed with Hashimoto's as you were the reasons I went on T3 were probably different but I'll share what little I know . . .The reason I was placed on T3 had to do with what FFC saw as a problem with my reverse T3. Even though my bloodwork did not show Hypothyroidism as it is traditionally determined through TSH and other tests I listened to their theory regarding 'reverse T3,' did research and decided to try it. Initially on a very small dose of T3, I think it was 10mg it seemed to help aleviate body aches and brain fog but it made me more sleepy. From what I understand this is highly unusual since most thyroid meds give a person more energy. Anyhow I took it as directed on an empty stomach and went up a little on the dosage. As the dosage increased I had heart palpitations and waves of weakness that got worse with every subsequent increase in the dose. (I was on it for about 3 months) I became more incapcitated than ever. After seeing an endocrinologist who suggested I stop taking it immediately, I did. The only problem was I did not ladder down off of it slowly I stopped cold turkey and even though the rapid pulse stopped the body aches were horrible. So I went temporarily back on it and decreased my dosage slowly which worked much better. Still sick and seeking answers I made an appt at another Endocrinology dept and took all medical records and blood work from FFC. Their take on the situation was that it was good I went off of the T3 because in their opinion it made my condition worse. They also ordered more blood work.

    I don't know if others have had this happen with the T3 or not. I just know I am relieved to have it behind me. I also know that T3 alone seems to be a very hot topic in the medical community. As far as taking T3 without T4 I really don't know. I hope things work out for you and perhaps others on the board have had better T3 responses than I have.

    Hope this helps.

    Best Wishes,
    Jolee
  13. 2Bhopeful

    2Bhopeful New Member

    Hi Annxya,

    Yes they did test for Lyme and it was negative but thanks for thinking of me.

    I hope now that you have a definitive result, even if it is only part of the problem, you can find therapies that greatly improve your condition.

    Take care and I hope you see some improvements soon.

    Thanks,
    Jolee
  14. 2Bhopeful

    2Bhopeful New Member

    Thanks Musikmaker,

    It sounds like you are proceeding with caution and from my perspective that is a good thing.

    I know what you mean though. You want so much to find something, anything, that will help get back the life you once had but yet you don't want to try a therapy and end up even worse. While I understand some meds make you feel worse before you feel better it's much easier to endure if you know there are proven research and facts that say it will help in the long run.

    If you don't already subscribe I do think the Fibromyalgia Network Newsletter is very good. They really stick to medical research findings and are true advocates. To my knowledge they do not have a financial interest in any one group or product.

    Hope you find things that help very soon.

    Best Always,
    Jolee



  15. 2Bhopeful

    2Bhopeful New Member

    Hi Jeduanboneis,

    I will answer your FFC questions as best as I can.

    Yes, Lyme tests are generally included. Prior to my initial FFC appt they sent a twenty page questionaire asking about my medical history and current symptoms etc. During the first consult the doctor reviewed the questionaire and asked other questions during an exam. It is my understanding that this is how they determine which blood tests to order. In my case twenty-some vials of blood were taken at the lab that day. Luckily, our insurance covered a lot of it because the bill would have been close to $4,000.

    As far as your concern that a particular virus or bacteria may not be active at time of testing I do know that certain tests indicate past infections or exposures and others indicate active ones. So they do cast a wide net, so to speak, with their testing.

    The doctor I saw was caring and it was reassuring to see a doc who believed what you were saying and then displayed compassion. Even though they do push their own products I have to say I think the doctor was sincere in his hope that he could help.

    I think the problem stemmed not so much from my test results as how they interpret them. For example, my Epstein Barr tests indicated that I had had severe mono in the past but it was not currenly active. Some medical professionals would see this as something that would not need to be addressed however at the center they felt it should be with anti-viral medications. In my case I became increasingly weak and nauseous on the IV's and developed a rash that it took me four months to get rid of. Now while I was there I met some patients that swore that the treatment was helping and others who were not sure yet. I hope this makse sense.

    I'm not familiar with the treatments you had mentioned so I'm curious about them, what were they?

    I hope this helped. Hang in there. I know it is hard to deal with all the time but just think how much more they know now than when we first became ill. At least there is recognition and a lot of people out there trying to figure things out. Stay hopeful.

    Best Wishes,
    Jolee


  16. jeduanboneis

    jeduanboneis New Member


    Thanks sincerely for answering my questions which made me understand more of what they are really doing. I am also thinking about going to the Hunter-Hopkins Center. Am doing some research as my body allows.

    The Ryfe machine that I used was supposed to send currents through your body (electrical)and change the structure of the viruses and bacteria. Not much success, but that was 20+ years ago. Don't think that I would try it again. But apparently Mikie has tried something similar and it was beneficial to her.

    The last alternative Dr. that I went to suggested IV colloidal silver treatments and I went for it. Each trip was a drive of 21/2 hrs. each way and I had 5 treatments. Each treatment lasted about 3 hrs. He said that I had an infection he just didn't know what, so the colloidal silver is supposed to kill everything and then we would go from there. Boy, was I ever a sick puppy. I would have to hurry home before the die off started. I firmly believe it took a good year to get all the dead stuff out, some really bad herxing.I had to go every other day before the viruses and other junk reproduced themseves.Felt better but not really and now 2 yrs. later I think I feel worse at times.Mikie also said that the same thing can be accomplished by the Transfer Factor.

    But I am just now ready to try something else as I think I have gotten over the disappointment of something else not working.

    Not having insurance until my recent marriage, I have never been medically tested. Only was tested by a machine that measured your electromagnetic field 20+ years ago.

    I am ready for antivirals and antibiotics. Just something.

    I would really love to independently do something through the ProHealth store, but have no idea where to start. I think I need to know what I have and I want to know everything I have. It might be too much to ask but I am hoping.

    I am beginning a raw food diet and really do feel better after just 3 days.

    Someday we will all be functioning.

    Thanks again,
    Jeanne
  17. 2Bhopeful

    2Bhopeful New Member

    Hi,

    I had the worse reaction to the IV's and the T3.

    In fairness to the Center I do have three drug allergeries.

    I wish I would have followed my gut though. I should have tried one new product a month or so but I allowed their sense of urgency with regard to their protocols influence my decision making too much.

    Take Care,
    Jolee
  18. 2Bhopeful

    2Bhopeful New Member

    Hi Jaye,

    I wish you well too.

    Thanks,
    Jolee
  19. ANNXYZ

    ANNXYZ New Member

    THE CENTER should NOT start multiple treatments at ONCE .
    There have been many people who have posted that they had reactions ( adverse) to therapies that were TOO aggressive AT ONE TIME .

    One person was on a high dose of ABX and depressed
    and confined to bed . When he asked about the high dosage, he was flatly told to continue . I think this is not wise .

  20. 2Bhopeful

    2Bhopeful New Member

    Hi,

    I hope you start to feel better soon too.

    It sounds like you will get a second opinion before starting the thyroid meds and it is a good thing to pursue. Those can be powerful medications. I had two other docs tell me that if a person takes T3 and they should not be on it that it can lead to other issues like osteoporosis. I responded to another post about my experience with T3 in the post "T3 & T4." Don't know if any info in there will be of value to you or not.

    I know the doctor I saw there did seem to be sincere too but pushing their products like they do does seem to be a conflict of interest. I know in some cases there are comparable products out there for less. Unfortunately I bought several of their supplements that I no longer take. Then again I'm sensitive to medications in ways that perhaps others are not.

    Well take care and best wishes in your search for more answers.

    Sincerely,
    Jolee