Discussion in 'Fibromyalgia Main Forum' started by tanu, Oct 28, 2005.

  1. tanu

    tanu New Member

    Hi! I was wondering what the statistics were.
    I needed a few answers
    1.How many people are taking treatment at the FFC?
    2.How many have actually benefitted from it.
    3.What were they being treated for -Fibro or CFS?
    4.How long after did they feel better?
    5.What positive results did they have
    6.What medicines were they on?
    7.What made them feel better?
    8.What is the percentage of improvement.
    9.How many felt worse?
    10.How many felt no different.
    Cant wait for the response!

    LISALOO New Member

    getting worse since going so I want to hear others experiences
  3. bpmwriter

    bpmwriter New Member

    my first appointment was back in the first week of june. i have cfs and fibro. the main infectious culprit per my bloodwork is EBV. i felt better during the first two months perhaps due to the initial effects of hormone therapy then began a rapid decline that included flu-like symptoms, worsening of pain and breathing difficulties that lasted 6-8 weeks at which point i started taking myself off of all medications (cortisol, T3, transfer factor, acyclovir). i'm in the process now of detoxing with questran and fiber supplements and slowly coming back to a state of balance. my last appointment was on the phone last week (my main goal was to make sure i had support for a disability case i'm about to file). i was encouraged to know that they would support such a case since i am need of assistance more than ever.

    my opinion is that the ffc doctors are not miracle workers and if you go in with high expectations, you'll be disappointed. if, however, you go in looking for advocates in your fight against these illnesses and doctors that are willing to experiment with you until you see improvements, then you will see benefits from treatment. in all fairness, i do not have health insurance so i have not always been able to afford all medications and supplements that were recommended to me. also, you must be prepared to feel like dirt not for a couple days at a time, but possibly weeks on end. only after the dust settles on the last couple months will i know if i'm going to see any long-term gains from treatment.
  4. nc2004

    nc2004 New Member

    Just had my first appointment two days ago. Feel somewhat better from IV treatments. Still too soon to tell. I have both FM and CFS. From my PCP I take Pamelor for sleep. FFC put me on Alpha Base Foundation Pak, Rest & Restore, Fibro Freedom, Energy Extract. IV's: Standard, Memory, Back/Muscle Pain. Waiting for my blood tests. Pam
  5. hopeful4

    hopeful4 New Member

    1.How many people are taking treatment at the FFC?

    I am, now at Seattle FFC. Started in March 2005 at Cleveland FFC.

    2.How many have actually benefitted from it.

    Although I’m still not feeling better, I feel I am benefiting. Here’s why:

    * Thorough testing that had never been done before.
    * Identification of specific, underlying issues, like hormonal deficits, low NK cells, low thyroid, mycoplasma, candida, and possible Lymes and neurotoxins.
    * Positive, proactive support from knowledgeable, caring people with up-to-date information.
    * I have a treatment plan. It gets revised as needed.
    * Hope for recovery.

    3.What were they being treated for -Fibro or CFS?

    I went in for CFIDS, and was diagnosed on the spot with FM also.

    4.How long after did they feel better?
    Still working on it.

    5.What positive results did they have?

    Oxidative IV (which is now discontinued) helped me greatly and immediately. Eliminated all pain in my joints and muscles, greatly improved my energy and cognitive function. This lasted for 3 weeks the first time, and 1 week the second time.

    6.What medicines were they on?

    I take a number of supplements/meds from other doctors.
    In addition, from the FFC:

    T3 (Formerly used cortisol and testosterone, but those were stopped.)

    Enzyme RX, NK Stim, Gamma Grow, Super Multiple w/o Iron, NT Factor, Acetyl L Carnitine, CoQ10, Jarrowdophilus, Nystatin, Artemisin, Provigil

    Just cancelled the Doxycyclin due to sensitivity. Will start something new next week. Formerly used Flucanazole for yeast (3 months). Now using the Nystatin.

    For sleep: Schizandra Dreams, from acupunturist

    7.What made them feel better?

    As mentioned above, Oxidative IV. Getting a good night’s sleep. Provigil seems to be helping. Still working on feeling better! Also helps: walking, qigong, yoga, Reiki, acupuncture, etc.

    8.What is the percentage of improvement.

    Not there yet.

    9.How many felt worse?

    Felt much worse on the Flucanazole for yeast. Herxed badly. Better off of it now.

    10.How many felt no different.

    Again, the jury is still out. When I started this process, Dr J. told me it would probably take me about a year to feel better. It’s been 7 months. Also, because I am unable to take many of the helpful hormonal therapies, I am not getting the full beneficial impact of those treatments. I’m just beginning treatment for mycoplasma.
    I always say that I’m not noticing improvement…YET! It will come.

    Take care,

  6. acesk

    acesk New Member

    Went October 2004. Had to travel to their facility, so I cannot take IVs. But the one they gave me when I did travel there didn't help the pain at all or my energy.

    Started all the supplements and cortisol and compounded thyroid meds and progestegin cream. Cortisol made me VERY sick for a week - had to skip work. Not good at all. Thyroid meds have helped my energy - 50% better. But a regular doc could have checked your reverse T3 to find that out. Progestergin cream doesn't help or hurt.

    Stopped all the supplements after 3 months - they didn't help at all and cost $200/month.

    My pain has gotten worse. The only thing they found with all of the tests were low thyroid, slightly low cortisol, low progesterone and slightly high Epstein-Barr.

    I spent $1000 plus for the supplements and drugs ($39/month for thyroid and $59/month for progestegin cream).

    I have decided to fill the antiviral script this weekend due to what I have read here. But none of my lab results were that high and I have gotten much worse in the last year.

    What has helped - a pain clinic doctor who has me on antidepressant and Ultracet for pain before the pain starts! Tried a new rheumy last week and he said we are easy targets to spend our money. I have also tried homeopathy, acupuncture and a naturalist. None helped over time.

    I wish I had better info.
    Sue in Florida
  7. ldbgcoleman

    ldbgcoleman New Member

    I will preface this by saying I have followed the protocol strictly and hung in there. I started at the end of April ans am feeling much better in every way. You will feel worse before you feel better. You have to stick with it! Lynn
  8. HppeandMe

    HppeandMe New Member

    I have been going since March and have followed the protocol to the T and I am still not feeling much better. Hope it works for some though. They seem to get a ton of business but I haven't heard many success stories.
  9. elsa

    elsa New Member

    Sorry, I couldn't resist! There are many FFC patients here and they have kindly come on and posted after their appts.,letting us know what happened, how they felt, how much it cost, etc. Others have also come on after a few months of treatment to let us know how they are doing.

    Some have CFS and some have both CFS & FM. Best I can remember only one patient wasn't pleased with how he was feeling ... BMPWRITER I think. I think he did treatment for about 2 months but don't hold me to it.

    Others, like me, have treatment plans that very closely resemble what the FFC is doing and getting good results as well. At the very least, they are getting the most comprehensive and sensitive testing available for CFS/FM.

    They also have the added benefit of being treated with respect and dignity which is nice for those who have disbelieving doctors.

    I hope you feel better soon and get the answers you need. You can also do that search ... there have been tons of posts with FFC in title.

    Take care,


    PS ... I hope you know I was kidding ... I also wanted to add that I was one of the ones whose treatment plan closely resembles FFC's. I treated for anti-virals .. rx and supplemental, fixed the sleep, addressed the nutritional deficiencies and am now working on adjusting hormones. Didn't plan on copying them , just happened that way.

    I have read many posts about treatments there and have recognized them from other members here who followed the same treatments before the FFC's openned, so they aren't pulling things out of thin air.

    I think their benefit besides the two I mentioned above is their open mind to trying whatever, and their willingness to stick with you. We don't have any gurantees of complete remission, or 100% functionality ... and the centers don't promise those things either.

    They just work hard for you and have extensive knowledge of all the possible, workable treatments that are currently out there. It's a personal choice I guess ...
    [This Message was Edited on 10/28/2005]
  10. bioman85

    bioman85 New Member

    Are you still currently going to the FFC? It sounds to me that you did not strictly follow the protocol they gave you...and maybe that is why you did not achieve any results (I am referring to how you stopped supplements after only 3 months). Please correct me if I'm mistaken.

  11. lilbird

    lilbird New Member

    I have been going to the FFC in Los Angeles for about 4 months now. For the first time sense I became sick I have been treated with respect for how I feel. The FFC truely beleaves that we are sick. They did blood tests that my reg. PCP didn;t even know what they were. They uncovered viruses, a mycoplasma infection, low thyroid, low hormones and the Dr. there thinks that I have chronic Lyme. We have been treating for all of this.

    I am just now starting to feel better.
    It has not been a cake walk, as a matter of fact I got much sicker befor I started to feel better. I had some nasty herxing for a good 2 months.

  12. acesk

    acesk New Member

    I did stop the supplements - still use the T3 compounded and progesterone cream. Now that want me to take Famvir (antiviral) for EPB and I'm going to fill that script tomorrow. I live at a distance, so I pay per phone call, and haven't had a phone call since my original visit and 3 phones calls that cost $1000.

    Sue in Florida
  13. browneyes259

    browneyes259 New Member

    1.How many people are taking treatment at the FFC?
    Me! A good bunch of others here too.

    2.How many have actually benefitted from it.
    So far so good here. I have already seen some small improvements after only 1 visit.

    3.What were they being treated for -Fibro or CFS?
    I am being treated for FMS & CFS among other things.

    4.How long after did they feel better?
    I’m too new to the center for this one. 1.

    5.What positive results did they have
    I have noticed more energy & less pain. Still having trouble w/ my sleep (Restless Leg Syndrome), but to their credit I’ve only had one appt. You can’t expect miracles, even though we’d like them.

    6.What medicines were they on?
    Before I went to the FFC these are the meds that I was taking:
    Celebrex, Elavil, Prozac, Lortab (as needed), Prednisone (as needed) and a couple other unrelated scripts.
    To those my FFC doc added:
    Cortisol, Triiodo-L-Thyronine(4 hypothyroidism), Klonopin (4 RLS), Sporanox (yeast), and a multitude of supps…….

    7.What made them feel better?
    So far I have been pretty lucky. I say that because so many of us are extremely sensitive to prescriptions, supplements, etc., but I have not had any adverse reactions yet.

    8.What is the percentage of improvement.
    Hard to say so far.

    9.How many felt worse?
    There are a few that have not improved, some because they didn’t follow the protocol set up by their FFC doctor, some for reasons I don’t know.

    10.How many felt no different.
    Very, very few.

    I hope that you find responses from everyone encouraging and that they help you find the answers you need. The FFC isn’t an option for some because of cost or distance. Some have, through much trial and error, figured out for them what works and have improved. A lot of times with comparison the treatments that helped them are very similar to the FFC treatment.
    One difficulty going outside the FFC, from my personal perspective, is finding a doctor who is willing and able to treat the broad spectrum of problems associated w/ FM & CFS patients.
    Sorry so long. Below I have pasted my post after my 1st visit for your info.

    God bless & good luck!
    Everything went wonderfully. I was one of the fortunate & after my visit immediately noticed a difference in my pain and fatigue levels. They aren't humongous(sp?) differences, but it was enough to give me a taste of what life used to be & it gave me HOPE! Hope for the first time in many, many years. That to me is priceless.

    A good thing too since the treatment isn't cheap....LOL!
    But like I told my husband, I don't know how, but we'll figure the $$ out because I want my life back! My goal for the night should not be making it home and onto the couch(w/ my massage mat) for the night. I'm only 27!

    My doctor was Dr.Spurlock and he was very nice. Went over my whole questionaire and did a mini physical exam(checked trigger points, thyroid, reflexes, etc.). All told he spent a full hour w/ me.

    Just going by the symptoms I presented with (w/o getting the bloodwork tests back) Dr. Spurlock told me I have hypothyroidism (w/ enlarged thyroid) even though my PCP checks my thyroid every time I go and never bothered to say a thing about it. To be honest, I told Dr. Spurlock that I thought my neck had just gotten fat from all the weight that I've gained over the past 5 years (75 lbs.). He also dx'd me with pituitary dysfunction, adrenal insufficiency, ovarian dysfunction, CFS(1st x officially dx'd) & he reconfirmed my FMS.

    I then had 24, yes 24, vials of blood drawn for testing. At least I was fortunate they didn't have to use both arms like they have with some. Dr. Spurlock told me the costs of the testing will be about $3500. Whew! So glad at least the lab work is covered by my insurance or it wouldn't have even been feasible. As it is I am trying to get my ins to covered this treatment as in-network, instead of out-of-network.

    I figure, and was advised by a friend who used to pay and deny this type of in/out of network stuff, why should I be penalized for being sick and having to pay out-of-network rates because they(ins co) don't offer me an in network option for this DD. Cross your fingers and toes for a positive outcome there. Anyway, enough rattleing on about that.

    After I had my bloodwork drawn I went in to get hooked up to my IV. FYI, I am hypoglycemic and ended up not getting any juice or food in quickly enough, because I felt ok. Well, it hit me hard a few minutes later so just make sure you grab a juice and something to eat right away. They supply all kinds of drinks & snacks, and also music, blankets and comfy recliners to relax in. Very nice setup.

    It took them a long time to get a vein set up due to the fact that I had to fast for the bloodwork. Just an FYI to anyone with an upcoming appt., drink tons of water even though you can't eat, as much as you can. They said I hadn't drank enough so my veins were harder to hit.

    BTW, anyone else get the IV that tasted like creamed corn...LOL!! You actually taste it going in. They told me it was from the back pain med they added to my bag. Seems silly! My IV took a while because I had a lot of cramping in my arm so they had to slow it down. But they ice and/or cold pack the area to help with the cramping.

    The only bad effect I had from the day was a bad headache for a couple of days which the LVN & RN both said is common after the Nutritional/Pain IV that I had. Also have had a lot of pain in both arms. But I imagine that is from all the "work" they had to do trying to get a line set up for the iv.

    I haven't had enough energy to type extensive info., until today, about my visit. I have also been having trouble with my tendonitis in both thumbs again, so typing is interesting and takes forever.

    I also have a few ??'s for those of you that have been going to the FFC centers longer than I have.

    Do any of you have any hints/tips on keeping your meds/supps straight. I was already on a lot of percription meds, now I've added two more scripts and 5 more supplements. Some get taken w/ food some w/o. Some are am....some are pm. Some are taken 3 hrs after a meal, but not w/ dairy. Help!!

    I am already foggy enough as it is. I'm afraid I'm gonna knock myself off on accident taking the wrong thing at the wrong time w/ the wrong food (LOL!). It took me an hour yesterday to set up my pill strips for a two week period. Aaaahhhhhh!

    Also, do any of you use a reminder system for your sfternoon meds. Never took anything that wasn't morning or night and can't seem to remember them well.

    Thanks to all of you for encouraging me through this first appt. It was hard emotionally and financially, but sssssooooo worth it. I am excited about my health for the first time in many years.

    I hope this can be an encouragment to others coming behind me. If anyone has any ?'s I'll be happy to answer whatever I can!

    Gentle Hugs,
  14. ldbgcoleman

    ldbgcoleman New Member

    Ok people please remember that they tell you it takes 4 months to a year up front. You will get worse before you get better and you need to follow the protocol to get better. Lynn
    [This Message was Edited on 10/29/2005]
  15. acesk

    acesk New Member

    I think the "worse before you get better" scares me so much that I didn't keep up with the protocol of supplements and antivirals. I felt so bad already and I couldn't take the IVs due to distance, that I couldn't stand getting worse (I still work full time) before I got better.

  16. ldbgcoleman

    ldbgcoleman New Member

    The getting worse part is not that bad!!!! When you think of the benifit it's nothing. You will feel worse for 5 days or a month but get better for the rest of your life!! It is totally worth it. I can do things I thought I would never do again. I felt like crap anyway and I was going downhill. I is a no brainer for me! Lynn

    PS I don't think you can say you weren't helped if you did not follow through on the treatments. You should say you don't know because you discontinued treatment. They tell you from the get go a minimum of 6 months to see major differences. They were very up front with me. Lynn
  17. MKlady

    MKlady New Member

    1.How many people are taking treatment at the FFC?
    I am at Las Vegas with Dr. Garcia

    2.How many have actually benefitted from it.
    I am feeling both better and worse now after two months...into my third month with high hope for the future

    3.What were they being treated for -Fibro or CFS?

    4.How long after did they feel better?
    About three weeks ago the hormones started kicking in and I have more energy but also more pain

    5.What positive results did they have
    More energy, little to no brain fog, less dry skin, easier swallowing, weight loss (yippee!), and most of all - actually KNOWING that there's something really wrong that can be fixed!!

    6.What medicines were they on?
    Effexor, Trazadone, Cortisol, T3/T4, Namenda, Ambien(sleep), Tramadol, B-12 shots (just starting) - just starting Diflucan for yeast - plus a number of immune support, brain function, energy support supplements

    7.What made them feel better?
    The fastest improvement has been the Namenda for brain fog and the Thyroid; I like the IVs but I am out of town so I don't get them except monthly at my appointments

    8.What is the percentage of improvement.
    Double - from 3 hours of activity max a day to average of 6 hours with much improved energy.

    9.How many felt worse?
    The pain is a lot worse. I expect to feel worse from herx now that we're treating the yeast. Then I expect to feel worse again from herx after heparin and we start treating the other buggies. I have a bunch more pain now, so am on Tramadol consistently

    10.How many felt no different.
    Not applicable!
  18. Sandyz

    Sandyz New Member

    I go to the FFC in Dallas and I am so glad I went. I started in April and have improved at least 60 percent. I have way more energy so I don`t have to be in bed or on the couch most of the day. I no longer feel flu-like everyday like I did before. It was worth every penny as far as I`m concerned.

    It is true that you will feel worse at times. They kill off the candida, infections and fix the hypercoagulation. All these things release toxins in the blood as they die off. They body then gets rid of them. I had really bad pain for about 2 weeks and then I felt better then I had in years.

    It takes time. Most people probably take a year to get back their health.
    [This Message was Edited on 11/06/2005]
  19. acesk

    acesk New Member

    I'm not giving you a hard time about FCC. I work full time and also travel a lot for work and I just couldn't feel even worse, even for a short time. I did 4 months and then had to stop.

    I'm REALLY happy for you that it worked for you!

    Sue in Florida
  20. Juloo

    Juloo Member

    1.How many people are taking treatment at the FFC?

    Started last Monday, November 7, 2005.

    2.How many have actually benefitted from it.

    Too early to tell.

    3.What were they being treated for -Fibro or CFS?

    Already having been diagnosed with both before the FFC, I'd say my biggest problem is CFS -- that's been with me for at least 7 years. The FM I have had is mild, and most of it has abated with Valtrex that I started about a year ago through another doctor.

    4.How long after did they feel better?

    Too early.

    5.What positive results did they have?

    A burst in energy after the IV, but followed by a die-off reaction from the anti-viral IV. After all this time fighting this thing, I am used to the 'may get worst before getting better' idea.

    6.What medicines were they on?

    Before the FFC, the only prescriptions are Effexor XR, Valtrex, and some gel for rosacea. I have tried several other things, and was recently experimenting to see if Requip (for RLS) would help w/sleep. Unfortunately, it just made me vomit, so the answer was a big NO.

    At the FFC, I have not received my first set of bloodwork results yet, but I have prescriptions now for Nystatin (anti-fungal) and Xyrem (for sleep). I should point out that I have had two sleep studies which document the lack of stages 3/4 sleep and have tried many other things both natural and prescription before going this route. I have not received my prescription for the Xyrem yet, but the Nystatin is going fine.

    7.What made them feel better?

    Things that had made me feel better in the past have been Valtrex, guiaifenesin, progesterone cream, Seriphos, and many other 'natural' products too numerous to name. I am also under the care of an alternative care provider and have been for about three years now.

    8.What is the percentage of improvement.

    Too early yet, but I am grateful that someone this past week posted a scale for fatigue. I think I'm going to put that on the refrigerator so I can get a good sense of where I'm at on a daily basis.

    9.How many felt worse?

    Herx from the anti-viral IV, as expected.

    10.How many felt no different.

    Too early.

    I've been very proactive on my own behalf since CFS has been a factor in my life. I've pursued many of the elements that the FFC treats with individual practitioners, with varying acceptance and/or understanding on their part.

    I made a decision to start with the FFC for several reasons. The first was that I would get full and detailed blood work, which I have not been able to get otherwise locally (and have it properly interpreted). Although I'm into alternative possibilities, I like seeing proof positive.

    The second reason was that I could check out elements that I could not find help with in my area -- mostly if I needed to be on heparin, mycoplasma and Lyme testing, and detailed thyroid and other hormone testing. As I've said before, I'm a self-starter on several things that the FFC advocates, so in those areas, I'm verifying that I continue to need support in those categories.

    The third reason was that I would have someone look at ALL the elements that are applicable in my case and put together a treatment plan that addresses them in an order that makes sense and could advise me on what the road ahead might look like.

    As I've told my husband, after going with the FFC, I feel like I will have checked all the disparate pieces that I've learned about but could find no help with. If testing comes back negative on some of them, at least I'll know for certain that I can focus on other areas.
    [This Message was Edited on 11/13/2005]

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