TO FFC OR NOT FFC VOTE YES OR NO PLEASE

Discussion in 'Fibromyalgia Main Forum' started by fmcurepls, Jul 16, 2006.

  1. fmcurepls

    fmcurepls New Member

    Hi,

    I am going to the FFC next week and was wondering how many of you think it is worth it versus how many of you think it is not worth it. I think this should be a very interesting poll. Thank you for your support and guidance. I have tried so many things for the past 7 years and want to make sure I am making a very educated decision. I hope that this will help others considering the same option.

    Thank you and Good Luck


    [This Message was Edited on 07/16/2006]
  2. lolee

    lolee New Member

    I have always read with great fervor the posts from people who do go.

    And I know this will not go over very well, but it just always sounded like a big con to me. to ME. some people swear by it. But I think I've heard of more people getting results from things they've learned here like stormy's shake/protoccol, or the supplements in the store here.

    again, this is just my opinion. and I have been one of the lucky ones who didn't have to go through 27 dr's before someone belived me . . . . .but it just seems SO expensive and for them to not take insurance, I don't know . . . . . just sounds a bit odd.

    love & prayers,

    lolee
  3. place

    place New Member

    The following is MHO, and should not be taken as anything other than that:

    I go back and forth on should I go, should I not.......

    I usualy trust my instinct, and a lot of red flags pop up, a majority of me agrees with lolee.

    However, I am going to keep my apt. Logically, some of it is part scam but there must be some truth to it for it to stay in operation and not fold up shop and go to the next town,state or country.

    I think the testing is great. I don't mind paying 1,000 in doctor visits (typical hourly rate for a doc is 200-250). Any everyone deserves to make a living.

    I DO mind paying for IV's, suppliments and all those extras. Don't get me wrong, suppliments are wonderful, but when the person who is reccomending them just so happens to sell them too... well.

    I think the extras is more of the money makeing part.

    Thus, I am not going to take anything I can not get from a script and thus have my insurance pay for.

    It will be very interesting to se what the test come up with.
  4. fmcurepls

    fmcurepls New Member

    I am supposed to go next Monday and it is out of town for me. I showed my immunologist the tests that I printed from this site and he has done almost all of them. I don't know if they are going to find anything that he hasn't found. I am soooo confused. I wish you the best of luck. Are you currently seeing an immunologist and have you had many of the blood tests done that have been posted from the FFC?
    I am concerned with the amount of blood that they take. Last time I gave blood I was very healthy and I was weak for days. They told me to only bring my last 6 month's blood results so they don't repeat anything. Hope you feel great soon.

    Sharon
  5. zoemurr

    zoemurr New Member

    I guess the pricey thing depends on how you look at it.

    It was $365 for the first visit. She did a thorough exam, gave me many ideas, and for the first time I saw a Dr. that believed me. After 2 visits and many supplements my fog is 75% better. Fatigue and pain are about the same. I'm going to start abx soon that should help with the fatigue. My chiro keeps the pain in check.

    I have spent 9 years paying $15 a pop for Drs. to look at me and perscribe ultracet or say they don't know, and that my blood work is fine. I never felt anyone (except my chiro) has believed me, and I never got anywhere. I'm scared to guess how much money I wasted on them.. I'm sure I've gone to over 30 visits, + two at the ER, and cat scans, MRI, colonoscopy and x-rays (which = over $650 in copays) for no help at all, and a great deal of frustration.

    This money for the FFC I felt was well spent. I got answers for the first time, and a path to follow. This path might not be the perfect one, but it was the first time anyone was willing to take the journey with me. Maybe I could have done it on my own, but I felt this was my last hope.

    That being said, they are a business. I only purchased a few supplements from them, and didn't do the IVs. I was not pressured in any way to do so. My ins. paid a lot of the blood work, but fortunately $ is not a huge issue for us.

    I saw Dr. J in Cleveland and plan to continue with her.

    Just because I was curious I called my reg Dr. and asked how much he would be if I didn't have ins. The answer was, "$51 for 10 min. unless he has to do something." yikes..

    HTH
    -Sherry
  6. Countrymom

    Countrymom New Member

    I go to the one in Atlanta and I fully endorse them.
  7. Jasmine

    Jasmine New Member

    From all the stuff I've read about FFC on here, I feel kinda negative about it and I decided not to go to it even though there is one in my state. I think FFC is okay for people who are really rich and can't find a really good CFS/FM in their area. But personally I will never go to FFC! I was seriously thinking about going to FFC in Connecticut but after reading all the negative stuff here about it, decided to do reverse therapy instead. RT was a disaster but now I am working on killing all the systemic candida in my body and giving up sugar after Labor Day.

    Love, Jasmine

  8. laura81655

    laura81655 New Member

    You may always wonder if they could help or not. I went only two times. The FFC doctor put me on a low dose Cortisol and it has been a life-savor for me. I still have pain, but not like before. Good luck to you.

    Laura
  9. kjfms

    kjfms Member

    to wish you luck. The way I look at it is the price I have seen listed here is about the same as a first visit for any specialist.

    If it is what you want go for you never know it just may help.

    Wishing you the best,

    Karen :)
    [This Message was Edited on 07/18/2006]
  10. Daisys

    Daisys Member

    I had an appt. to go to FCC and then found a Dr. who specializes in FM/CFIDS and went to him instead. He's not on our preferred list but met us in the middle financially, so it comes out ok. I'm getting good results.

    I wonder if the FCC just doesn't bother with paper work and if they're not on the preferred list, you could still get some of it covered.

    If you all do a separate thread, I'd appreciate being kept in the loop.
  11. fmcurepls

    fmcurepls New Member

    To Everyone Who Responded,

    Thank you so much for your input. It has really helped me make a more educated decision. As of today I am definitely going. My appointment is on Monday in the Atlanta office.
    I will keep you posted as to my progress and give you any information that I learn. It is so comforting to know that there are actually people who care and understand what we are all going through. I consider you my friends. I hope that each and everyone of you on this site is having a better day today. I will keep you all in my thoughts and prayers. Hopefully one day soon together we will find a cure.

    God Bless,

    Sharon
  12. fmcurepls

    fmcurepls New Member

    I am going to the one in Atlanta too. Thank you for your response. Good luck with your progress.

    Hugs,

    Sharon
  13. fmcurepls

    fmcurepls New Member

    My first appointment is next Monday in Atlanta. I am worried about the amount of blood that they take. I will bring them my last 6 months blood results so hopefully that will cut down on the amount drawn. The last time I gave blood I was healthy which was about 7 or 8 years ago and I was weak for days. This is the only thing that scares me.

    Did you have an IV on your first visit and if so which one?
    I would probably need one to start rebuilding my blood and for energy.

    Please respond and let me know about your first visit. Thank you so much for your time and understanding. Good luck with your progress.

    Hugs,

    Sharon
  14. ckahele

    ckahele New Member

    Let's get something straight-I AM NOT RICH !!
    I make less than $26,000 a year and support myself, my two kids, pay a mortgage without the benefit of any child-support. I am obviously not rich.
    However, after struggling with idiot no-nothing doctors and trying to figure this out on my own I realized I couldn't.
    By a miracle of god (actually this site!) I found out about the FFC.
    When I first called and found out the price I was so shocked I hung up on them. Then I called back and made an appointment.
    To pay the bill I made sacrifices: no cable tv, basic phone service, mac n cheese three times a week, etc.
    My kids were supportive cause they hated seeing me sick.
    A year later...I have a life again.
    Bottom line: what price do you put on your health??
    Cyndy
  15. ANNXYZ

    ANNXYZ New Member

    " To Igenex or not to Igenex" . I visited FFC for a while . I am grateful for the Igenex tests that indicated lyme disease , which many of us here have been diagnosed with ( after years of CFIDS / FM) .

    However , I am not convinced that most of the FFC docs
    are experienced in treating lyme .

    I would strongly encourage EVERY PERSON HERE to invest in a test that may identify an infection that causes CFIDS or
    FM symptoms. Igenex is a lab that makes the MOST accurate test available .

    Do not allow yourself to believe that you could NOT have lyme. Many lyme sufferers never have a bullseye rash
    nor do they remember a tickbite .
    More info on lyme can be found at ILADS ( org) .

    If you DO HAVE LYME ( like many of us who did not believe it could be a possibility ) you will NEVER improve without treatment .

    Most of the standard tests given for lyme are HIGHLY
    UNRELIABLE .

    I can not give an enthusiastic opinion about the FFC because of the overwhelming expenses , and the fact that
    there is not a body of clear evidence that their protocols really work , though some people do appear to improve . Unfortunately , the underlying root of this disease is still unclear , and all approaches are hit or miss.

    I will say that if there were an FFC with a doctor who was TRULY EXPERIENCED in treating a large number of CFIDS patients ( not just a family practice doc who suddenly
    puts on the CFIDS/ FM hat ) I might have a different opinion .

  16. fmcurepls

    fmcurepls New Member

    What a blessing that you are better. You sound like an amazing person, and mother. I am so happy for you. Thank you so much for your very enthusiastic response. I am looking forward to getting my life back. Have you posted any information on your FFC visits? I will check your profile. When did you start going? What did they find that other doctor's didn't find and how long did it start for you to begin feeling better? Sorry for all the questions.


    Hugs,

    Sharon
    [This Message was Edited on 07/18/2006]
  17. ckahele

    ckahele New Member

    Wow, thanks for the sweet talk-I'll take whatever I can get!
    I saw about a dozen docs B4 the FFC.
    None helped and one even put me on an non steroidal anti-inflammatory which made me suicidal.
    Have pretty much hated docs ever since.
    Found this board by accident.
    This board is how I found out about the FFC.
    When I think back to my previous existence I get chills.
    I used to crawl home from work. My kids lived on Wendy's value menu. The house was disgustingly dirty. I would spend all weekend laying on the couch crying from pain and exhaustion and trying to gain enough strength to start over again on Monday.
    I remember telling my mom I thought I was dying a slow death.
    I started treatment at FFC in April of 2005.
    Definitely felt worse B4 I felt better-due to all the nasties in my system dying.
    I had 3 viruses-funny, no other doc bothered to check.
    Systemic yeast-funny, other docs don't believe in it.
    Non existent thyroid-funny, other docs said it was fine.
    These were my worst problems.
    Since then I have dropped down two sizes and hike and garden and am looking into horseback riding lessons and.. I CAN ACTUALLY SMILE AGAIN !!!
    I go back in August for follow-up blood tests, I'm not 100% but I'm at least 85.
    I haven't posted in awhile: I've been out raising hell and making up for all the lost years---YEE HAW!
    So, what's your story ??.....
    Cyndy
  18. StephieBee

    StephieBee New Member

    I am just curious...were you dx'd with hypothyroidism thorugh Basil testing? I was by my shrink who happens to do alot of wholistic stuff.
  19. ckahele

    ckahele New Member

    It was my FFC doc who diagnosed me.
    I know a blood test was involved but don't know if that's basil or not.
    He told me that most docs out there (including most endo's) follow the practice of huge parameters for an 'ok' thyroid.
    Cutting edge medicine dictates that the parameters are much much narrower.
    This put me in the range of a disfunctional thyroid.
    Can't believe the difference since I've been on the meds, mine are compounded.
    He told me that probably 50% of our USA population has bad thyroid....I believe it.
    Cyndy
    p.s. I love that he uses prescription meds only where necessary. 80% of my treatment is with natural sources.
  20. place

    place New Member

    Does your insurance pay for the componding meds?

    How much have they cost you?