Discussion in 'Fibromyalgia Main Forum' started by Slayadragon, Oct 26, 2006.

  1. Slayadragon

    Slayadragon New Member

    Has anyone has any good experiences with these places?

    I've heard a lot of bad experiences, but that doesn't mean that people haven't had good ones.
  2. nixon

    nixon New Member

    Hi Lisa, I've been going to the Vegas FFC since June of this year have been at least once a month. It's VERY expensive!!!!!! My saving grace is that thru the blood tests we've fgured out I have 6 viruses, I'm now making an appt. to see an Infectious Disease Specialist!!! I've also been on Fluconazole for yeast since I started in June, and it has really helped out my terrible sinus problems!!! So I'd say It's been pretty good>>>>SO FAR!!!! Blessings, A.Nixon
  3. onedaymagpie

    onedaymagpie New Member

    Hi Lisa:
    I have gone to the FFC in Torrance for over a year. I continue to go and think it is very helpful, but they do not have the magic bullet. I think it is very important to try to be as proactive as possible in the treatment - and to follow what helps for you. Do your own research.
    In my experience, my doctor is great with communication and working with me. Overall - yes, it has been good, but not everything they have offered has helped . . . and some stuff is very pricey, so, it's good to question and reevaluate

    Best of luck to you, Mag
  4. yodasmom

    yodasmom New Member

    Please keep posting on the exp at these centers. I have gone to other docs in the Boston area with the same protocals but am deciding if I should spend the $$$and go there/ Am doing most of the supplements on my own after hearing Dt. T talk.
  5. Slayadragon

    Slayadragon New Member

    What treatments have they recommended that have been helpful? How did they diagnose your problems?
  6. marmayer

    marmayer Member

    I have been in treatment at FFC since 6/2005. I am very happy with my progress. Yes, it is expensive but I`d rather feel better now than keep going to MD`s that know nothing but how to treat symtoms for years. The FFC know how to rid your body of infections,yeast,virus`s... They also work with you to build your nutrition up.

    The IV`s really give you a boost on your immune recovery. I`m in maintenance now-next app is in 3 months. I`m on just a few supplements and 4 hormones. I feel like a new person. Worth every penny!!!!
  7. onedaymagpie

    onedaymagpie New Member

    Most recently, the Dr did another set of blood tests and the focus we are working on is: 1) try to build up natural killer cells, as mine, like many with this DD, are way low - I am mainly using Maitake D mushroom for this. The Dr also likes pro-boost and transfer factors, but I want to focus on one at a time and retest; 2) try to keep Candida under control - I work on this with diet and probiotics, as well as anti-fungals, like garlic and nystatin (diflucan and others are used too, but I think those are harder on the body than nystatin); 3) watch hormone imbalance (mainly thyroid and progest.) for me; and 4) continue to try to knock down those persistent viruses - this also goes back to # 1 above to build immune system.

    In addition, I also am a big fan of the Shake ala Storm, as well as trying to ensure nutrition is good through lots of fresh foods.

    Hope you are going well.

  8. mollystwin

    mollystwin New Member

    And overall it's been a good experience. They are not perfect, but the best option for me at this time.

    If you want to know about testing, do a search. I remember some posts about the exact tests that people have had. Many are the same, but there are some variations by person based upon a 35 page questionaire and hour long visit with the physician.

  9. mindbender

    mindbender New Member

    It's obvious That they don't have a cure either. I haven't been there but I talked to them on the phone. They have one at Cleveland. I think what they were trying to sell me was the initial visit being long, and that they listen and understand our people.

    However my insurance (paid for by us, the American tax payers) does not cover them.

  10. munch1958

    munch1958 Member

    The FFC of Detroit has helped me tremendously! I've been going since March 7 2006. They have helped me to uncover the underlying root causes of my fatigue. I'm spending way more time being vertical rather than horizontal. I'm doing the things I used to enjoy before the fatigue and pain took over.

    I suspect others who have good outcomes are getting back to the business of living LIFE. It’s hard to fit everything in that I want to do into my day. I am exercising an hour a day 6 days a week with no sign of post-exertional malaise. I’m sleeping deeply every night and my mind is not racing the way it used to do.
  11. dahopper

    dahopper New Member

    I have been going now for about two and half months...doing everything by the book.

    This weekend I felt so wonderful too!!! I did things with my friends that I have just been able to dream about before. I stayed busy all weekend and today still going strong.

    But by Wednesday after my IV and Thursday after my other one will be another story for a day or so then I am sure I will be good to go again. They are letting me do my anti viral IV's back to back so I will not have to make two trips to Dallas.

    I know this is helping me and I know more day after day how much better I am getting. It is tuff though. It has not been easy but there is light now at the end of my tunnel. Hugs, Love Debbie
  12. hopeful4

    hopeful4 New Member

    I have had an overall good experience. After reading this message board, it seems that people's experience varies at the different centers and with different doctors.

    As others have mentioned, it's not a magic bullet. We all have varied infections, imbalances, deficiencies and strengths. We all react differently to medications and supplements.

    I think that one of their strong points is the thorough nature of the lab work they do. I had been ill for 5 years and gone to many doctors, before learning at FFC that I had several previously undetected, underlying infections, hormonal deficiencies, and specific immune problems.

    Some of their IV therapies were helpful to me, and I had some improvements before hitting a new low on medication. Then, when an FFC opened in my state, I switched to it. There, the doctor had me retested for Lyme Disease, and this time I tested positive.

    Without this proper diagnosis, I'd still be in the dark about my health problems. The doctor I see, although fairly new at treating Lyme Disease, is doing a great job with me, and others. She follows me closely, and when I have a problem, or herx (get sick due to die-off and toxins), she is there to help.

    It is expensive, however, you can submit the "superbill" they provide to your insurance for some reimbursement. The labs are also pricey, however, your insurance may cover the labs.

    The supplements and medications are also costly. Once I knew what supplements and herbal medications I was to take, I researched on the internet and found them for much less. If you order your prescription medications in a 90-day supply through mail-order, it is usually quite a bit less also, again, through your insurance.

    Sometimes you may feel worse before you feel better, and that can be tough. In summary, if I hadn't gone to the FFC, I'd be getting sicker and sicker with undetected, and untreated Lyme and other viruses, low thyroid, low hormones, rock bottom NK cells, etc. I see going there as an investment in my health and my life, which I'm working towards regaining.

    Best wishes,
    [This Message was Edited on 10/30/2006]
  13. yodasmom

    yodasmom New Member

    Any of you FFC patients been to the Boston/Wal and/or been to other tx centers inthe Boston area?

    Don't know if worth the $$$ to repeat a lot of what I have done but in a real bad place right now. Worse flare in a long time since summer ended.

    Any comparisons? we must have Boston peole here.
  14. wld285

    wld285 New Member

  15. wld285

    wld285 New Member

    I bumped this hoping people who have already responded will read this. I do not reply alot, and can't even keep up with the information (Itry). But I had made this inquiry awhile back.
    I started with FFC in Philly in Aug., and really had high hopes, since I have suffered with this for 40 yrs. At that time, I had only been seeing negative things about them and was getting very depressed. I do, however, have some renewed hope.
    In fact, yesterday I bumped my appoint. up 2 wks. (going next Mon.), because what I am doing now is not helping and I feel like I am wasting precious time. Also, brain fog has been extremely bad last couple of weeks and it is scaring me.
    I will find out at next appoint. about the tests for infections. People have talked about the good experiences, but I wish some of you would elaborate (especially I am seeing people my age or close to it). Since that is my next step, (besides still working on the sleep issue), I am wondering if antivirals have really made a difference for people, and any particulars on them
    THANK YOU THANK YOU to anyone who can help me out with answers. Linda
  16. dahopper

    dahopper New Member

    Linda for bumping FFC....I love to read the stories about them.

    Also Thanks Babs for the encouraging words. I have such high hopes with them. I leave again tomorrow to go to Dallas for two more IV's and then I just have to have one a week. It is such a drive for us. It does take us 3 hours to get there.

    Linda I can really tell a huge difference sinse I started the anti viral IV's in my energy. They knock me down for a couple of days after having them then it seems I get this burst of energy and it has been so wonderful. Please don't get do discouraged !! Hang in there and do ever little thing they tell you to do right down to the last pill. But keep them informed of any reactions to anything you may have. I have had none and I am not a pill person but was so determined to just do it and now I am so happy I did.

  17. Tiggereh

    Tiggereh New Member

    I thought that I would share my experience with the Boston FFC. I started going in June 2006, after episodes of fatigue so bad that I was falling asleep at my desk at work. I went to see my family practioner and she diagnosed me with CFIDS/FM. When I asked what I should do, she suggested cutting back on all activities. I asked for next steps, she sent me to a rheumatologist who suggested a bunch of anti-depressents (I'm not depressed!) and then didn't follow up. Through research on my own, I found the Boston FFC.

    In short, I'm fairly convinced that the Boston FFC has saved my life. Dr. Bial is an amazingly knowledgeable woman who is a pleasure to see. She listens, is knowledgeable, and willing to experiment with what she thinks will help you.

    Positive outcomes that I have had since starting at FFC Boston:

    1. Sleep disturbances 100% better
    2. Bowel issues mostly better
    3. Constant infections must less frequent
    4. Regaining some energy

    It is essentially a program that takes some time, and I've seen builing upon results. I had the thorough testing that people described, and showed positive for thyroid, candida, a bunch of viruses, etc. I take many, many supplements each day, but through my own experimenting (lazy noncompliance, I have found that they make a huge difference). I have had dramatic improvements with anti-virals (Valtrex, for Chronic Epstein Barr), thyroid treatment, CorvalenM for energy and pain, and Proboost for immunity. I take many other things, and they also help, but those are the major ones.

    It is expensive, no doubt. The process of trying to get reimbursed by my insurance company is almost like a second full time job. They charge a lot for supplements, and I can find many online cheaper. But the bottom line - I am having awesome results, and feel hope for the future....
  18. cherylsue

    cherylsue Member

  19. Slayadragon

    Slayadragon New Member

    What did the FFC do with regard to your bowel issues?
  20. Tiggereh

    Tiggereh New Member

    It was a couple of simple things. The first was recognizing a yeast overgrowth, recommending an anti-candida diet, and putting me on nystatin/diflucan. The second thing was probiotics, which helped a lot. I think there might have been more, but I apologize, I can't remember - very foggy day....

[ advertisement ]