FFC Visit

Discussion in 'Fibromyalgia Main Forum' started by toronto133, Nov 30, 2005.

  1. toronto133

    toronto133 New Member

    I went to the Detroit FFC for my first visit this week. Let me start by saying that the staff were great. However I was very disappointed with my visit with the physician there. It was a big commitment for me to go between travel and lab costs (I'm from Canada).

    This is only my impression but I found his attitude ranged between disinterest and irritation. He would ask me a question then cut me off. He said I "probably" had FMS even though I had a prior diagnosis. I tried to explain to him that it was a low pain day and that my pain level fluctuated widely. He was skeptical that I needed to be treated for a ureaplasma infection as I have been.

    I felt like I left with my tail between my legs and I am still in a bit a state of shock. The antibiotics that I have been taking the past few months have helped me substantially (plus doing many of the other things that I have learned on these boards). I had hoped to continue these through the FFC.

    Perhaps my expectations were too high but I really expected some sense of validation and less skepticism about my experience.

    Not too sure where to go from here. However, I do know that the FFC is doing great things for other people.

  2. elliespad

    elliespad Member

    I would go straight to the horses' mouth. Contact the main office and advise them of the treatment by this doctor. I would put it in writing. Disbelief/condescending attitude from the unenlightened bunch but NOT from an FFC. EVERY patient should come away feeling validated and full of hope. SHAME ON HIM!

    [This Message was Edited on 12/01/2005]
  3. morningsonshine

    morningsonshine New Member

    I feel bad for your rotten experience, but, thank you so much for posting, i have been considering Detroit, because it's closes, but if i have to travel anyways, maybe i'll make it to the one in cleveland.
    I would encourage you to follow up on Elliespad's suggestion also, it may make you feel better about your experience, and make a difference for someone else.

    Don't give up!
  4. Manwithfibro

    Manwithfibro New Member

    I think these FFC centers are a scam. There is NOTHING proven to cure FM or even get rid of symptoms...we can do some things like exercise or get rest and take vitamins but if there was a magic pill or magic cure, we would have heard about it by now...I have yet to meet a large segment of FM sufferers that have been "cured" of their pain. It just doesn't happen. I talked to my primary care doctor who has 200+ FM patients and he says symptoms wax and wane but never go away and some people actually gradually get worse.
    He tries his best to treat it but has not found anything that proves reliable.

    TIM
  5. TwinMa

    TwinMa New Member

    How do you explain all the people who HAVE been helped by FFC??
  6. toronto133

    toronto133 New Member

    I do believe in the methodology behind the FFC's otherwise I wouldn't have gone in the first place. This posting was only my experience with a specific doctor at one location.

    In my limited experience most primary care physicians know very little about Fibromyalgia. Maybe people don't get better because they have never received the appropriate treatment.

    I think for many of the people on these boards who have sought out the FFC, they weren't willing to accept the "there's nothing that can be done" scenario presented to them.

  7. intrigue

    intrigue New Member

    Toronto,
    I am so sorry your first FFC visit was so disappointing. Like elliespad suggested, call the main headquarters and talk to them about it. FFC seems to be concerned with their image, and I hope they will make things right with you.

    So many of us have been given hope and support from these clinics ... I'd hate for you to give up.

    Manwithfibro,
    You are certainly entitled to your opinion about FFC's.

    Being a current FFC patient, I am going to respectfully disagree with you. Nobody knows what causes fibro, and nobody knows if that cause is even the same for two people. Of course we don't have a magic pill thats going to cure it forever. We don't even really know what it is.

    The FFC's don't treat "Fibromyalgia" per sae. The FFC's try to treat the underlying causes of the illness.

    If you talk to FFC'ers on this board, and if you talk to FFC'ers at the clinics themselves, you will find more people who have been helped than those who think it is a scam.

  8. TwinMa

    TwinMa New Member

    Sorry, toronto 133! I wasn't directing my comment at you. I was asking Tim, manwithfibro, the previous poster about how he would explain the success of other FFCers. It was rude of me not to address your original post, too! Sorry!!

    I am so sorry that you were treated so poorly by the FFC doc. He should be ashamed of himself! Like we don't feel bad enough already! I agree with writing a letter to the main office. Get all your experiences down on paper and send a copy to the Detroit office and a copy to the main corporate FFC headquarters.

    I had an issue with the Denver FFC, and that is what I did. They have tried very hard to make things right.

    Is there another doc you could see at the Detroit office? Since you flew in from Canada, could you start up with a different FFC? Just have them transfer records?

    Again, sorry for the misunderstanding. I did know the intention of your post. You wrote a very clear post, very well stated. I understand putting so much stock into a potential solution, and then having your hopes dashed. It is crushing.

    Hang in there!! I hope things go better for you!

    Katy
    [This Message was Edited on 12/01/2005]
  9. elliespad

    elliespad Member

    I agree. I too am going to FCC. I realize you were commenting on the demeanor or the specific doctor, and not the clinics, as a whole.

    My First visit was at Philadelphia and will have my next at Norwalk, CT (Just opened). I VERY MUCH liked the Dr. I saw (Dr. Nurse-Bey). And I damn well better get validation and hope from the doc I see in Norwalk. I think once one accepts that there is no magic bullet, (and there isn't) then one best explore the zillions of ways to treat EVERY known abnormality which has been documented by their blood work.

    Just some of MY abnormal findings are:

    Thyroid goiter, low cortisol levels, high testosterone, high estrogen, non-existant progesterone, active EBV, HHV-6, Low Glutathione, Low Tryptophan, low B-6, multiple mitochondrial deficiencies, low Vit-D, multiple amino acid deficiencies, metabolic dysfunction, excessive oxidative stress,I could go on and on.

    If your doctor hasn't attempted to test and TREAT many of these, then that is why he/she sees little improvement. Sometimes their lack of testing is restricted by insurance regulations, sometimes by lack of being able to think outside the box, sometimes disinterest. The testimony of many who are going to FFC's should be carefully considered when deciding if these clinics are scams.

    As to the cost. When one has not worked for a while (myself, it has as been 16 years) yes cost can be prohibitive. But,,,the initial visit to ANY specialist is $250-350. I've had probably $100,000 -$500,000 of worthless "routine" bloodtests, so why complain about the cost of specialized testing? If you can't afford the cost, then say I cannot afford the expense but don't say they overcharge for worthless services.

    I haven't even received my results from my first round of blood work, but I am still hopeful they will find some abnormalities, that had not been previously tested. And I BET,,they will know how to treat these findings, instead of saying, "hmmmmm". Halleluliah, Holy S**t, where's the TYLENOL.
  10. nc2004

    nc2004 New Member

    As you know, I am also going to the Detroit FFC. My experience with the Dr. also was somewhat disappointing. I don't think his bedside manner is his strong suit. I have seen him three times now, and I find that he has warmed up a little more each time. I have tried to concentrate, though, on the treatment, not the doctor. They are following the FFC protocol--and if that works, then I'll deal with the doctor's personality. Of course, I would like to have a warm, sympathic doctor like some on the boards talk about at other centers! And since starting with the FFC, I have had days with more energy than I have felt in years.
  11. toronto133

    toronto133 New Member

    I really appreciate all of your advice.

    Yes, you are right nc2004 I will try to concentrate on the treatment and not the doctor. I have a follow-up appt scheduled but I am still considering moving to another office.

    I think it is really a personality thing...not sure that I have official complaint status on this one. However I can always hope he has a personality turn-around like the Texas doctor! I do find it odd how some doctors seem to have no sense of what it is like to be a patient. (also on a personal level it drives me crazy to be patronized!)

    I am glad to hear that so many of you are doing well with your treatment.
  12. laura81655

    laura81655 New Member

    I had a similar experience with my FFC Dr. from Los Angeles. He was pretty "cocky" the best way I have to explain it. He didn't spend an hour with me, maybe 30 min. or so. He also said " I know exactly what is wrong with you". It was just his tone, I guess.

    I didn't go back because I found out from a Neurologist that I have small-fiber Neuropathy, and not fibro.

    I do think, as other's suggest, to report it and find a different FFC doc to see. You are spending a ton of money and time to do this.

    I know that others have been helped, so it's worth another try with a new doctor.

    Laura
  13. Manwithfibro

    Manwithfibro New Member

    Because some things help a little for awhile then stop working. That is the hallmark of FM. Everyone and their grandma sells this and that and this and that yet I don't see people free from FM! If you believe it gets rid of the symptoms, then go ahead and go. I just think their claims
    are a little stretched when they do not even know what the heck the cause of this stuff is. IF they opened an MS center
    and treated MS people, would you think they were helping them get rid of their MS? Doubtful. I think we can place FM in the MS category as an illness that doctors are baffled on and have no answers. Best they can do is treat symptoms.
    If you look at brain scans, we have brains that look like MS people except the white dots are in a different place in the brain....my guess environmental damage.
  14. LISALOO

    LISALOO New Member

    I know people who have gone into remission with Fibro and/or CFS, you can find people on this board. And yes, lots of people receive sustained relief.

    I have interstitial cystitis, there is no "cure", no real treatment. Like CFS or Fibro, they don't know what causes it. But I treated it, with supplements, diet, and other suggestions, and am now 100% better, so is an extended family member. If I wouldn't have tried treatment, I would be in horrible pain still. So just trying for treatment is important. I could have gave up and said, yep 20% may go in remission, there's no cure, I give up. But I would have given up on a lot!

    The more people go to doctors and try new treatments, the more of a chance there will be for greater understanding of a disease, and better treatments where people, yes, most may not be cured but may be 90%!!!

    The FFC tests for things that other doctors don't. Just by eliminating secondary infections, or they may be primary infections in some people, great improvement can be sustained.

    I hate being defensive, I understand everyone's body is different and that not everyone responds to the same thing. We can see that here with people's experiences with different supplements. But to call FFC "quackery" unfair. They don't even say they can cure you. If you listen to commercials they say they can make you 95% better, not everyone 95% better.
    [This Message was Edited on 12/02/2005]
  15. springrose22

    springrose22 New Member

    Go to the Fibroandfatigue website, you will find an email contact, write them and tell them about this Dr.'s attitude. I wrote to them once and Dr. Holtorf himself replied. I also agree with the approach the FCC's are taking, but sounds like this Dr. needs an attitude adjustment, or needs to go work elsewhere. Write to them. Marie
  16. wishingonastar

    wishingonastar New Member

    I can't tell you what I different experience I have had with Dr. Juguilon at the FFC in Cleveland. If you can get to her, I would encourage you!

    The FFC's have had there share of "dud" doctors and those don't usually last too long. Dr. J. has been in Cleveland since the start of that center in 2003. She uses the FFC protocol, but had adapted it based upon her experiences with her patients. She has a 95% success rate and I can attest to my remarkable recovery because of her treatment. Please feel free to see my other posts. In a nutshell, I was fine one day, and my life was gone the next. I spent the next year going from about 20% functioning, back to 95-100%. I credit Dr. J. with getting my life back!

    Please report any dissatisfaction that you have with any of the other doctors! It does make a difference!

    Best of luck to you!

    Wishingonastar