Question: FFC?

Discussion in 'Fibromyalgia Main Forum' started by Highlights, Mar 26, 2008.

  1. Highlights

    Highlights New Member

    Just reading through a post today on the $$$ members spent in 2007 on medical care. Many posting keep referring to "FFC"....

    Sorry to be to lame but what does that stand for or mean?

  2. Juloo

    Juloo Member

    There are over a dozen around the country. Various results from people here.

    I happened to have a good experience w/Dr. Bullington at the Atlanta FFC. I continue to see her.
  3. Highlights

    Highlights New Member

    Thanks so much for telling me. I appreciate it :)

    Did you have to travel to go there or is it near where you live?

    Nancy
  4. lishka

    lishka New Member

    You can do an online search and find their website. They have centers around the country. I go to the closest one to me, which is out of state. I went there for the first visit and have had subsequent appointments over the phone. Many people here have spent thousands and thousands of dollars there, but not me. I've just chosen not to do everything that's offered.

    I've had a good experience overall. It's not perfect, but nothing is.
  5. Juloo

    Juloo Member

    So you can understand why I only visit on-site about once a year. Then I schedule a couple of phone consultations in between. For a visit, I drive up on a Saturday or Sunday and try to get the first appointment on a Monday morning. Depending on how I feel, I drive home that afternoon or the next morning. Then I have hopefully scheduled some 'recover' time into life at home!
  6. Highlights

    Highlights New Member


    I did a FFC location search and Atlanta would be the closest as I live in South Florida. We drove to Atlanta once, it was about 10-11 hours, not fun.

    I could fly up there and I guess stay over night. How long do you need to be there to be evaluated, a day or longer?

    Do you mind me asking when you went up there, what do they do? Was it mostly talking? How long do they spend with you? Do you see only 1 person or multiple people? Do they give you prescriptions for sleep/pain? Do they basically make suggestions on how to cope or exercise? Are you glad that you went... Do you feel it was worth the drive and cost?

    Just wondering. I would be willing to make the trip and the expense if I had feedback from others that felt it was worth it.

  7. Highlights

    Highlights New Member

    Hey,

    Do you feel that your trip to FFC and subsequent appointments helped you more than your local doctors?

    I currently see a Rheumy that is very smart, but only works part time due to a bad neck injury. I like him but have come to feel that he has burnout with me or Fibro patients. He is always kind to me and always offers scripts for muscle relaxers, Ambien, Anti-inflammatories and Ultram. That's it.

    I often wonder if someone else might provide a more comprehensive approach or if what he is doing, is the same anyone else would do for me. I know there's no 'cure' for fibro or arthritis.
    [This Message was Edited on 03/27/2008]
  8. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    It will depend on many factors whether this is worth a try for you.

    One is how desperate, that is how disabled you are and how much you need to be functioning again. For example, do you have children to raise, do you have to work.

    Second will be your financial situation. First visit cost about $1,000 if you do the visit, buy the supplements and get the IV. That doesn't include labs, which should be covered by insurance.

    Which brings to third factor, and that is your insurance company and what they will pay. You pay out of pocket and then try to get reimbursed from insurance company.

    If you do the visit, IV and supplements, count on first visit being at least three hours. The visit will be one hour to 1.5 hours.

    For me, at the time I went, it was worth it. But if I lived closer to one of the experts commonly spoke about here, it might have been better for me to go there. If you live in FL, you might see if you can go to Nancy Klimas.

    I live in Birmingham area and only expert I could find at the time was a chiropractor. Like you, I liked that FFC was comprehensive, looking at supplements, lifestyle and meds. All agree that those three are needed in treatment. Yet, most have to get advice or get them from different sources. FFC helps advise or sells all three.

    Some warnings for you though. The IV is a boost. It is not covered by insurance and does the same as supplements, only faster and more direct. You may not want to spend the money on it. It made me nauseated. Second time I had IV without stuff that caused my nausea. Next time I didn't have it at all. But, doctor recommended it each time.

    Second, you may find some of the same or comparable supplements they offer cheaper elsewhere.

    I see one in Atlanta and have been for a year. I was desperate, looking at having to sell my business and our family losing income from my going on disability. Yet, I am not eligible for government disability because of not paying SS for years. So, my income would be total loss. And I was not functioning. I was homebound spending most of time in bed for five days at a time.

    So, I am thankful for the FFC. But, I have now found a local doctor I am told specializes in dysautonomia and CFS and FM. I have appointment with her. I will decide after my first visit if I want to change.

    Tina
  9. Juloo

    Juloo Member

    They're actually closer to Kennesaw or Marietta, so they are in the larger Atlanta area. I'm not sure it's possible to know where one stops and the others start! I usually stay at a Holiday Inn Express in Kennesaw just off the Interstate. There are many places to eat (and shop -- if I'm feeling up to it) nearby, and it is not exactly close to the FFC but is close enough).

    My first visit (I think November 2004?? I think I put it in my profile), I had about an hour with Dr. Bullington -- we went over all the paperwork I'd filled out and other test results that I'd brought with me from various tests in the past -- and then had LOTS of bloodwork drawn. I did choose to stay and have two IV treatments -- I think that probably added another hour and a half to two hours. It's my understanding that they have an on-site pharmacy now (I remember getting a postcard in the last few months), but at the time, I left with the supplements we'd decided on and prescriptions to be filled at home (normal stuff) or through a compounding pharmacy (hormone creams, thyroid, etc.) or through a specific pharmacy (Xyrem). It can take a week or so to work out getting that stuff to you at home.

    So I guess I was out in time for lunch and could have been out much earlier if I'd needed to. The first time I went up, I stayed that following night as well, because I wasn't sure how the IVs and trip would affect me. I drove home the following day. About a month later, I went up again to review all the bloodwork results and tweak the prescriptions/supplements and some follow-up bloodwork. (Actually took my son up with me as he was on school break and we spent three days and did a little sight seeing as well.) After that, I think I had two or three phone conferences over the next year.

    There is a booklet that I was given my initial visit that dealt with lifestyle issues -- I must say I didn't spend a lot of time with it since I'd had a lot of history and research under my belt by that time, and the majority was not new for me.

    My insurance did pay for the bloodwork (after deductible). Did not pay for other stuff.

    I'm sure it will be a very individual answer for everyone here, but for me, yes, I am glad that I went, and yes, I felt it was worth the drive and the cost. I still see Dr. B, and I have my yearly on-site visit scheduled for May. We are down from a 2-earner family to a 1-earner family because of the economic situation where we are, and have had to make choices about how we should spend our income. My husband agreed that keeping up with treatment is important.

  10. Highlights

    Highlights New Member

    Tina,

    Thank you so much for all the information. It was very useful. I have been researching 'options' within a 60 mile radius of my home and there are several Psysiatrists/Pain Management doctors about 1 hour away who are board certified. I've never been to this type of specialist but my understanding is they are good for fibro, arthritic, chronic pain conditions. Perhaps they would evaluate me more comprehensively. Who knows...

    Maybe before making such a big trip out of state, I should try one of these doctors and see what they have to offer. Maybe I will get lucky.

    I do utilize supplements but I'm pretty fussy about my brands. I like Pure Encapsulations, Eclectic Institute and some of Dr. Teitlebaum's. Not likely that I would purchase supplements from FFC.

    You mentioned a 'Nancy Klimas. Forgive me but who is she and where is she if you don't mind me asking?

    Thank you so much for responding and the information. I think I'd prefer to try someone closer at the moment.
  11. Highlights

    Highlights New Member

    Thank you both so much for sharing your experiences with the FFC. I appreciate it more than I can say.

    I would definitely check everything out in advance with FFC and my insurance company. Would not want any unpleasant financial 'surprises' when I got there.

    I think after reading some of the posts that I might be better off going to see a Pysiatrist (sp) about 60 miles south. I live in such a small town we do not have any. I don't really want to see a Pain Specialist because I don't tolerate pain meds well. The pysiatrist(s) do treat fibro and chronic pain. So maybe they could help me at the moment without me having to travel so far.

    Since I was rear-ended a few months ago, the accident has really made my neck and upper back muscles so painful. Been seeing a Chiropractor who is wonderful; uses electric stim and ultrasound for muscle spasm/inflammation.

    Trying to locate a massage therapist with the right touch....enough pressure to do some good but not so much that they drive my pain level through the ceiling. Went to someone 2-3 weeks ago and had terrible pain for about 5 days following the massage. I had to take Ultram, Soma and Celebrex I was in such pain. Been fearful to go to anyone since then. Not worth the added pain.

    I don't know why more massage therapist don't Specialize or train for Fibromyalgia.

    Anyway, thank you both so much for your input. If I strike out with the psyiatrist, FFC is always still an option.

    Gentle Hugs,
    Nancy
  12. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    Sorry, so late responding. I guess I am assuming you have CFS. She may not be good if your problem is FM.

    Here is some info about Nancy Klimas:
    http://www.ncf-net.org/forum/klimas.htm
    http://www.immunesupport.com/library/showarticle.cfm/ID/4760/e/1/T/CFIDS_FM/
  13. kellyann

    kellyann New Member

    Hi,
    I also see Dr.Bullington in Atlanta. I have for 2 years now. I can't say I have gotten any better but I am on pain meds until I do improve. I did find out thanks to the extensive testing done at the FFC that I do have Lyme disease as well as several virises. Yes, it is very expensive to go to the FFC. Each Dr. visit costs me $199.00. Plus whatever supplements, precriptions, etc. I always refuse the IV treatment. I had it one time. And it was not worth $150.00 in my opinion. So no matter how much they try to talk me into it, I never do it anymore.
    I think Dr. Bullington is a very caring person. She really listens to my complaints and does her best to help. The only thing I don't like about her is the way she pushes those very expnsive supplements that I don't feel really help me much.

    Kellyann
  14. kellyann

    kellyann New Member

    Hi,
    I also see Dr.Bullington in Atlanta. I have for 2 years now. I can't say I have gotten any better but I am on pain meds until I do improve. I did find out thanks to the extensive testing done at the FFC that I do have Lyme disease as well as several virises. Yes, it is very expensive to go to the FFC. Each Dr. visit costs me $199.00. Plus whatever supplements, precriptions, etc. I always refuse the IV treatment. I had it one time. And it was not worth $150.00 in my opinion. So no matter how much they try to talk me into it, I never do it anymore.
    I think Dr. Bullington is a very caring person. She really listens to my complaints and does her best to help. The only thing I don't like about her is the way she pushes those very expnsive supplements that I don't feel really help me much.

    Kellyann
  15. lishka

    lishka New Member

    I've never done the IV treatments, so that wasn't an extra cost for me. I didn't do it the first time because we had a plane to catch and I was already exhausted from the trip up there and the bloodwork.

    My insurance works with LabCorp. They have Quest, but were able to send my blood to LabCorp, so it was covered by insurance. I've recently asked my FFC doc to test me for Lyme, EBV, HHV6, etc. Since he's out of state, he can't order bloodwork for me. So, he just faxes the lab request, I see my primary doc here at home and my primary doc orders them through my hometown lab. No problem.

    Also, the phone appointments have been helpful. I've had the "official" ones that I had to pay for, but have had several conversations with my FFC doc that were free. In fact, last week, after I faxed him, he called me and spoke with me for 25 minutes. I don't get that much time with most of my docs. And I wasn't charged for it. It depends on the doc, I'm sure, but mine is great about that.

    My rheumy here was nice, but had nothing to offer but scripts for sleeping pills. If you want the comprehensive bloodwork--which I did--I recommend the FFC. Unless you can talk your GP or rheumy into it.

    I buy some supplements from them and some from other places. My local Whole Foods often has the Energy Enfusion vitamin/mineral powder on sale, so I stock up on it then. But, I'm very picky about what companies I use and I won't just go buy the cheapest version of magnesium or iron I can find. Having a good quality product is more important to me than saving a buck or two. You just need to do your own research and find the companies you trust. I've found the prices the FFC charges for supplements to be comparable to other places, but sometimes you can find things cheaper elsewhere.

    One last word about the IV treatments--some people have found them extremely helpful. Like others wrote, they're a boost and that can be useful. I probably will never do them, simply because I don't want to fly up to Portland just for that. But, if you live nearby and have the money and interest in trying them, go for it.

    Good luck to everyone!
  16. alliejcooke

    alliejcooke New Member

    Hi Lishka,
    Which doctor did you have?
    A