I am questioning the usefulness of the FFC

Discussion in 'Fibromyalgia Main Forum' started by Hootie1, Aug 15, 2006.

  1. Hootie1

    Hootie1 New Member

    I am very disappointed because my rhuematologist is questioning the FFC and how they are determining treatments. He said that as a viralogist he does not understand how they can say that I should be treated for the infections based soley on the blood tests.

    I am spending a heck of a lot of money and am starting to wonder! I just can't seem to get any answers!

    So, I am taking 4500 of valtrex and I may not need to?? Lord knows I feel like he**.

    Any thoughts?
  2. place

    place New Member

    sorry a long one, I think I am on my soap box today. Remeber folk this is just my opinon, nothing more or less.

    They try different things that maintream medicine has failed to treat or is not standard practice.

    Your doctor should question it, I assume he is more involved with mainstream practices.

    I read a quoat on the boards: Today's mighty oak tree was yesterday's nut who held their ground.

    My Allergist (who I love, he is a mad scientist and come up with the cheapest solutions to anything), said that for every medical breakthough, the founder has always been judge by his peers as crazy (he said this after I asked him about the fungus in the nose thing).

    When I run the FFC drugs by my GP, I just want to make sure there is not any drug interactions or harmful to my body.

    As far as virus, they are finding out more and more that those little buggers are the cause for cancer to heart burn. Who knows what bug we might have that has yet to be discovered.

    The question should be independent of the cause or test done, do you feel better? Does the treatment help you?

    I know I would feel a great deal better if they would take insurance and were not so expensive so I did not have to question motive, but until the protical is standard practice, doc's nor insurance with accept them.

    Good luck, always go with your gut, it is typically the correct answer.
  3. louiesgirl2

    louiesgirl2 New Member

    I questioned their costs myself. It just seemed like a lot of money. The fact that they do not accept insurance makes me wonder also. Is it because they are not accepted by insurance companies or, that they want to pocket all the money for themselves.

  4. Jeanne-in-Canada

    Jeanne-in-Canada New Member


    Medicine wouldn't evolve w/out medical mavericks to kick around. And they always do get kicked. I'm amazed againa nd again at how narrow minded medicine is. They can't do anything for you, but they'll put down anyone who tries.

    And if virii can't be dx'd by blood tests, then what the heck are the tests for? Really? Besides, the FFC goes by your history and symptoms too. Its also true that virii and bacteria are being implicated in many illnesses that were pawned off as being stress related, like ulcers to name a biggy.

    They are very expensive, but that's because they are out of mainstream and insurance won't cover them. It's too bad they are so expensive and that only money can qualify a person for treatment. But at least they are open and running. There is a huge market for ME, and they are filling a need. I have no idea what their motives are, of course they need to turn a profit to run.

    Btw, I don't go to any FFC and not sure I would, but they have helped many. And I am an advocate of the medical maverick. I've b een treated by a similar brands of mavericks, aka environmental doctors in Canada. fortunately, environmental medicine is covered in several provinces, mainly Ontario wherre I live, and most of their treatments and tests are covered too. They've had a huge fight to practice too. A high profile one was dragged through the court system in Toronto, and their was a huge fundraising campaign to pay for his court fees as the long trial exhausted his own money. Env. medicine is fairly respected in Ottawa though. If you have FM/CFS, you have it fairly good here. Even our local media is very supportive.


    jeanne
  5. mollystwin

    mollystwin New Member

    I too am spending a heck of a lot of money on FFC. I am also questioning one aspect of their protocol. I'm confused about taking an antibiotic for 2 months for pnuemonia that they found in my blood tests. I am not bothered by this pneumonia and the antibiotics made my candida go crazy, even with the antifungals. So I stopped taking them for now and maybe I never will take them.

    I agree with what Place said. I also think it's good for us to question our care rather than just accept and do everything they tell us to do. I have an appt tomorrow and I;m bringing my DH with me. My dr will have to give us a very good reason for taking these antibiotics, or I will not take them!

    Is it the valtrex that is making you feel like he**? Maybe it's a die off? I am not on valtres, so I can't give you much advice with that.

    Overall, FFC has made me feel better, and I do have some of my life back. I do not regret going there and would still recommend it to others, but the "honeymoon" is over and I now feel they are not perfect as I once believed!!
    They are still the best option for me and for many.

    Good Luck!!!
  6. mollystwin

    mollystwin New Member

    FFC does not accept insurance because a lot of what they do is not covered by insurance. Also, many insurance companys balk at paying for so many lab tests etc. It would be very expensive for them to try to fight insurance co's denials etc and so they opt not to. I work in health care finance and understand this. Also, there are many other drs with thier own clinics who practice combination of wholeistic medicine and traditional who do not accept insurance for the same reasons.
  7. Jeanne-in-Canada

    Jeanne-in-Canada New Member

    I'm glad you stopped the abx treatment on your own when you saw how bad your candida problem got. And alternative practitioners definitely aren't perfect.

    I took abx for 9 mths for 2 blood pneumonia bacteria. I knew I had candida, but didn't have chronic vaginitis till after the "treatment". I questioned how abx could affect the candida, but I trusted that doc, too much. Way too much, should have listened to my GP and my own gut. Over 7 yrs and counting w/ chronic vaginal yeast and I've tried most everything.

    I WOULD NOT recommend resuming abx at all.


    Jeanne
  8. kellyann

    kellyann New Member

    I am on all kinds on antivitral and antibiotic meds. It makes sense to me though. I tested positive for at least 5 virsuses plus lyme disease. I have felt like pure heck for months now, but I believe it is from the die off of the viruses. I am praying this treatment works. Nothing else has EVER. What other choices do I have? Just lay around, do nothing and become bedridden? No way!

    I thank God I am fortunate enough to be able to afford the FFC. I truly believe they are the solution to my health problems, if not they sure as heck try. No other doctor has taken the time or even talked to me as if I were a human being with a real sickness. They have done more tests than I ever had done before.

    So my options are: either go to the FFC, or go to the docs on my insurance plan, who are clueless about what to do with me. My healthcare via my insurance docs consists of depression meds and pain management( see a doc once a month for 30 day supply of perocet). No help to feel better. No nothing. So My choice is obviously going to be the FFC.

    I've gone to the FFC for about 7-8 months now. I'll let you know what I think of them next year, haha! Hopefully, I'll be singing their praises all the louder!

    Take Care!
    Kellyann
  9. zoemurr

    zoemurr New Member

    the $700 for the first 2 visits at the FFC costs about the same as 40 some co-pays to other Drs. For this $700 I was given respectful care, a path to follow, reasons for my symptoms, and I already feel about 50% better.

    I have shelled out $15-$20 here and there for 9 years (well over $700 I'm sure) to Drs. who saw me for 10 minutes, decided I was depressed, and offered me drugs that I didn't want.

    If you have a willing Dr. I think some will re-write your bloodwork so ins. will cover it.

    I think it's more that ins. won't have them then they won't take it. They give you the info so that you can file, and some do get reimbursed. The FFC would have to see 40 patients a day, and they see 8. They couldn't perscribe meds for "off label" use. They would need to be accountable for every step they take, and since what they're doing is not "mainstream" the ins. would constantly be fighting with them.

    My Dr. wasn't thrilled about me going either but he said, "If I've felt as bad as you have for this long I would be going too."

    My chiro doesn't take ins. either, and she has helped me a great deal as well. She's all about "voo-doo", but she's wonderful.

    Just my opinion..
  10. TXFMmom

    TXFMmom New Member

    I wasn't pleased with my FFC experience, and I switched to Dr. Salvato, who takes insurance, and does virtually all the testing they do, and DOES TREAT IN MANNERS WHICH MY INTERNIST REFERRED TO AS SPIRITED AND CUTTING EDGE.

    IN medical lingo, that meant that she might be out there a bit, but he did admit then, THAT HE HADN'T BEEN ABLE TO HELP ME A LOT WITH MAINSTREAM STUFF.

    As a medical professional myself, I DONT' HESITATE TO POINT THIS OUT TO THE ONES WHO QUESTION MY TREATMENT.

    That usually shuts them up, big time, as well.

  11. Hootie1

    Hootie1 New Member

    Please feel free to join in on the post, I just wanted to stick my head in and said thank you everyone for responding.

    I am at the point where I just want to stick my head in the sand. I have a full time job and am totally drained. It's like a ball and chain! I have started the process of disability retirement but am very scared and nervous. I am questioning everything right now. I wish that I could just relax and take care of myself and family without the stresses.

    Anyway, just venting... thank you all for being here, I truly don't know what I would do without everyone here!!!
  12. Mikie

    Mikie Moderator

    It is interesting to get some feedback on the FFC's as more and more of our members are treated there. Money aside, it will be results which will determine how useful the FFC's are for the majority of patients. Thing is that it takes a really long time to see results when trying to control stealth, chronic infections which may have been sapping a person for years.

    I don't think most people realize how long it takes. We are used to having something, say, Strep Throat, going to the doc, getting an ABX, and feeling better in a fairly short period. With stealth, chronic infections, it's a totally different situation. One really has to adjust one's expectations. That's hard to do when one is paying big bucks.

    Those who have been treating Lyme or mycoplasma infections know that it can take years of ABX treatment to get them under control. Chronic viruses, especially in the Herpes Family, never really go away and people with our illnesses often suffer from them chronically or have them reactivate frequently.

    It has taken me five years to get to where I am and I'm not well--yet. I was on ABX for a number of years; I periodically have to go back on them if I get run down and the mycoplasma infection tries to reactivate. Same with the AV's. In addition, I've taken Heparin injections for the hypercoagulation and transfer factors because they fight the infections in a whole different manner. I pulse the TF's every six weeks for a couple of days.

    There were no FFC's when my docs and I put together this rag-tag regimen empirically. It was really cutting edge stuff then. We didn't know what to expect but we did know it wasn't going to get results overnight. I don't know whether the FFC's are going to turn out to be effective for a few, for most, for some, or for none. Only time will tell. Because they are expensive and run a lot of tests, I wonder whether some people expect results right off the bat. I do think some have stated here that they are feeling better, but real healing can take a long time and one often does feel much worse before feeling better.

    There are alternatives to ABX for those who cannot tolerate them but they were a God send for me and I have had no problems.

    Thanks to all who post about their experiences with the FFC's, good, bad, and in between. The FFC's were not the first to use all the testing and plethora of treatments but they are the first chain of clinics using the same approach to our illnesses. FMS/CFIDS specialists have been doing this for a few years but there are far too few of them. Finally, there are people like me who have had to do things on the cheap, performing our own research. Tansy has made amazing progress, on her own basically, in an environment hostile to our illnesses.

    I believe the FFC's will refine their treatments as they learn from their patients and it will eventually filter down to mainstream medicine, that is, if their treatments prove to be effective. That will take time. In the meantime, thanks to all who have shared their experiences. It is very helpful.

    Love, Mikie
  13. rhat

    rhat New Member

    I;m new here, 56 yo, just diagnosed in April. I'm going to climb on my well worn soap box here....ONLY because of a wonderful FFC Dr. that would see ME not a paper with numbers on it that said my lab values were within a normal range. I've known for many years I had thyroid and other hormone issues. PCP's did tests, saw normal results and then threw the ball back to me basically saying I am supposed to feel well, the labs are within normal limits.

    I am a retired R.N. I worked long enough to see the allopathic (conventional) medical systems philosophy works really well for emergent health issues. I'd have only 2 of 6 family members without it. However, mediating symptoms with drugs doesn't cure anything. My PCP ignored hypothyroidism, obstructive sleep apnea and potential Lyme disease for years because labs were OK. I'm pretty angry about that. I've lost a lot of years of quality life because of it.

    The care my FFC Dr. has initiated just since April has done more to improve my health than my PCP has done in 25 years. I too have questions about the cost, though I understand why they don't participate in insurance programs. I also explore and research every new treatment plan, nutriceutical and prescription. My health is my responsibility. If at any time it appears we are paying a lot of $$$ for no good reason I'll be looking elsewhere to be sure. The instruction and teaching my Dr. gives only gives me confidence that she really does understand what is going on and does have a workable plan, for me. It won't work for everyone. But the per centage of people helped, I believe, is greater than the percentage of "help" to be found in the allopathic community. To me there is a big difference in finding a cause and going after it, and just treating symptoms with drugs.

    JMHO
    Rhat
  14. mollystwin

    mollystwin New Member

    I am happy that you are getting relief from FFC!!!
  15. acesk

    acesk New Member

    I went tot the FCC for a year - no help whatsoever and a lot of money spent. The doctor (in Denver) finally told me it helps about 30-40% of people to some degree.

    The odds were not in my favor. I'm doing much better now with a good pain doctor and yoga and thyroid meds.

    Sue in Florida
  16. alaska3355

    alaska3355 New Member

    This is O.T., but I love your pic on your profile! Terri
  17. marmayer

    marmayer Member

    I`ve been going to the FFC for a little over a year and have never felt better! I do think they know what they are doing or I would`t feel this good. Yes, it`s expensive,but I`m holding on-my health and well being is worth it.
    [This Message was Edited on 08/16/2006]
  18. findmind

    findmind New Member

    Love your profile pic!

    You probably feel like he** because the treatment is working! I'm sure they explained that to you, right? The ones the FFC patients are telling us about do make you sicker as they kill off the bugs.

    I've heard somewhere on the board that if you feel really bad, you can back off the treatment while your body gets rid of the exposed bugs and toxins, then begin again. Ask your FFC dr. about this, ok?

    The rhuemys are so used to treating the PAIN symptoms, not any of the clearing out of the viruses, bacterias and toxins they create, so what do they know?

    I always say, if they don't have it, they can't possibly know what its like, and if the treatment eventually works, then your body needs it and if you can afford it, go right ahead.

    To me, the FFCs are treating part of the problem: read the Dr. Cheney NJ Lecture posting I made today about heart failure in CFS.

    I think if one attacks the toxins first, maybe CFS won't progress to the Diastolic Heart Failure Cheney describes.

    There's always hope!
    findmind
  19. Hootie1

    Hootie1 New Member

    Don't offend us by trying to sell nutrition- if you have something to say- this is the forum. I am offended by someone coming on this support network and trying to take advantage of people with problems.

    Your profile explains nothing and I wonder if you have CFS/FMS or if this is just an avenue for sales. If so, many of us are seasoned and can see through it, but for those who I can't I feel the need to post this.

    I've also reported you to the moderator. We don't need people to take advantage.
  20. Hootie1

    Hootie1 New Member

    Thanks- the funny thing is that the profile pic is just a standard ms pic. I just have loved this ever since I saw it. However, in 1990 when my husband and I were going east from CA on highway 10, I was able to take a video very similar to this picture in New Mexico. Unfortunately, years later in FLA my camera was stolen along with the tapes.