Success with FFC's

Discussion in 'Fibromyalgia Main Forum' started by GBHope, Dec 24, 2005.

  1. GBHope

    GBHope New Member

    How many of you are getting well working with the FFC's and how long have you been working with them? Just something I'm thinking of if absolutely necessary.

    GBHope
  2. elsa

    elsa New Member

    You can put "FFC" or one of the variations in the above search bar for alot of detailed information on these clinics. Members have been very generous in sharing their exact experiences with the rest of us.

    Even with positive outcomes no one is getting "well" yet ... unfortunately. We don't have a cure available to us yet .... but we can aim for remission and then work towards maintaining it. There are several here who are in remission but it takes committment and time .... about a year.

    I'm not a patient there but am quite familiar with their treatment approach and have gone through similar treatment plans .... am trying to get to full remission ... have been in early remission for a while. The last leg of my plan was the HPA axis ... some improvements immediately, others are gradual baby steps ... but heading in the right direction just the same.

    I've hit the stage of "hurry up!" , "hurry up!" .... cannot wait until all hits optimal ranges! Patience has never been one of my strong points but I'm working on it!

    Take care,

    Elsa
  3. hopeful4

    hopeful4 New Member

    Hi GBHope,
    As Elsa suggests, you can search here for more details on people's experiences with treatment at FFC.

    I had gone to many Drs. mostly naturopathic for tx for 5 years. CFIDS diagnosed early on. Well-meaning doctors, but only palliative response on my part, many ups and downs, then breast cancer.

    Finally decided I needed to go to a specialist in CFIDS, just as I had selected a specialized breast cancer center. Found the FFC here on this forum. Looked at other approaches, but chose FFC for it's comprehensive, integrative, thorough approach.

    Started TX in March. Found many underlying issues. Dr. said it would take about a year to be feeling much better. By October still not feeling any better, actually feeling worse.

    At that time I also switched to an FFC closer to where I live. Dr. there said that I should have been making improvements by now. Had me re-tested for Lyme Disease using the Igenex Western Blot. Tested positive, whereas previous Quest test was negative.

    Now I'm on the road to treatment and recovery! The Lyme was the major underlying culprit, other culprits have also been identified by FFC. No other DR. had even suggested the thought of Lyme, or many of the other underlying issues.

    It won't be an overnight success, it's going to be baby steps...and sometimes 2 steps forward, one step back. But now I'm moving in the right direction.

    Best wishes,
    Hopeful4
  4. GBHope

    GBHope New Member

    When I initially got sick 10 years ago, I initiated treatment with Standard Process vitamins and did do a lot better and feel like I was getting better, had ups and downs, but always came back to feel better. This time, I'm not getting better and it is really scaring me. Wish I had never had my hysterectomy. Seems like that pushed me over the edge because I didn't rest enough after and now I'm in this mess.

    GBHope
  5. Mikie

    Mikie Moderator

    I'm glad you are making good progress. I'm wondering whether you have had any relapses or setbacks while progressing. As you know, I am also getting better and am much better than five years ago but progress has been slow.

    Every now and then, I will have a relapse like the one I've been in for the last three weeks. It could well be that it's due to my trip to Atlanta and the stress of looking at homes to buy. I am a wee bit better and believe I'm on the upswing again.

    I was just curious if you go through these kinds of periods or whether it's all been uphill. Continued success to you.

    Love, Mikie
  6. elsa

    elsa New Member

    It's good to hear from you. I am sorry you are dealing with a flare right now .... Positive thoughts heading your way.

    I had to give your question some thought. As for our average, run of the mill, setback flare ... I have had one.

    I still get quite mad over this! As you may remember, I am on the HPA axis segment with mostly bio-ID hormones. GH injections are part of the treament.

    I recently went 6 days without GH due to an admin./delivery problem. During that time I went into a full fledged CFS flare. Hadn't had one of those type pain days in a long, long time. Once the problem was resolved, it took about 5-6 days to bring things back to par.

    I did more research on GH and CFS after that experience. I had always associated GH with FMS, never CFS. I found alot of interesting information coming from Chaney to Bennett to Teitlebaum on down to lesser known CFS MD/Researchers.

    Dr. Alfonso Leal-Cerro (Seville, Spain) has done research into this as well ... with interesting results and worth a look when time permits.

    GH also increases the body's immune strength.I had no idea of this. I was familiar with the muscle-cell growth and collegen increase ... no clue on the immune system. It does explain the intense CFS flare in flu like pain symptoms I had though.

    You are probably knowledgeable on this as Dr. Chaney has had a positive influence on your recovery. He has some very stong, positive opinions on GH in treatment for CFS.

    He sites Greta Moorken's study that found CFS patients had, on average, a 50% reduction in GH. He takes this further remarking that the actual percentage number is probably much higher.

    The patients in Moorken's study had been sick a relatively short time ... average 18 months. He feels that the longer you are sick, the lower amount of GH you produce.

    Upon further reading, I came across this statement of his ... "CFIDS is a GH deficiency syndrome". You could have knocked my over by the power of suggestion after I read that one.

    He goes on to address the difficulty in testing for this and what GH treament protocol he has his patients on. With research done on his own patients he concludes that GH is one of the most powerful treatments for a CFIDS patient.

    In my mind, this explains the CFS flare I went through during the break in injections. The positive, in an otherwise infuriating situation, is I had the chance to see just how effective my GH treatment has been for me and I am still "early days" yet. Most advocate the 6-9 month mark for improvements.

    Many of the other studies will relate the benefit of GH in treatment of FMS ....

    Other then this one instance, I have not had any backward steps. It has been a wonderous discovery. Little things start creeping back into my life.

    All my life I have been an avid reader of fiction. During the height of these illnesses, I was reading 5-6 novels per week. Not just for entertainment, but also trying to hang onto whatever cognitive/word recognition I had left, LOL!

    I recently realized that it took me over a week to finish one particular hair-raising, psycho-killer, paranormal -hero saving novel that I had eagerly been awaiting to hit the bookstores. OVER A WEEK! Wow! It's because I was doing other things ... not remarkable things ... but new to reappear for me things. How incredible.

    Other similar events ... Working a 13hr high energy day without "forcing" myself every step of the way, but as a normal person would .... and not having to come home and do a 48hr face-plant in the bed as payback.

    I have met my husband for casual dinners after similar work days (not as many hours tho)and it wasn't a forced, miserable experience. I felt normal .... pleasantly tired after a good days work ... like everyone else would feel.

    I have been exposed to the usual winter illness suspects and held my own. I was quite worried about this ... (I asked your input on this a while back if you recall.)


    A common upper respiratory cold came down the pike ... co-workers, husband, family ... I got it too, but instead of the 4 to 6 weeks to resolve, I had the same length of time to recover as everyone else.

    We'll see how it all comes together. Many of my treatments have been extremely similar to yours. I'm doing the maintainance for viral/immunity, daily vit. protocol and staying on top of my sleep disorder.

    Hindsight being as wonderful as ever, I wish I had started working on the HPA axis first as the FFC centers do. It is such an intricate process .... and a bit time consuming, but very worthwhile.

    So many of the hormones I am taking now could have taken the place of some of my medications. Classic treat the underlying cause vs the symptoms.

    I find myself taking my excessive daytime sleepiness meds later in the day, the closer I get to my proper T3 dose. Pain meds about every 9 hours vs 4-6 .... I recently went down to 1mg lunesta from 2mgs. Soooooo slowly, I am heading where I need to be.

    I am dealing with a new set of problems that I think you are familiar with. It's the dealing with getting better. My main obstacles are impatiences and anger and fear.

    The light at the end of the tunnel is getting brighter and brighter .... I have zero patience in waiting for it's full arrival.

    I have alot of anger in that all the lost time did not need to happen. Also, I am close to remission, but not there. After getting a big taste of it ... I want it ALL and become angry at it not being ALL the way here yet.

    Lastly, I am fearful, as these illnesses are insidious little monsters and fight just as hard to get the upper hand as I fight to get into remission. I think this aspect will ease with time with more successful battles won, IE getting over the winter cold normally, etc.

    If memory serves, you had to learn how not to be sick ... Maybe similar to some of my issues?

    Well, as usual, I have no restraint when it comes to posting responses. What appeared to be a simple question got a HUGH response from me. Upon reflection, I didn't know how to anwser it in a concise manner. ... That's my excuse and I'm sticking to it!

    I hope all is well with your family. I'm wishing a speedy recovery from this latest flare you're in. If you think more on the HPA axis ... (I think you have treated some in the past, yes?) I'm happy to talk more about it.

    We with FMS/CFS need to be treated differently endocrinely then the more routine endocrine patients, (not to belittle others, we're just bazzare and new on the block) and we require more then what most conventional doctors understand.

    Take care,

    Elsa









  7. GBHope

    GBHope New Member

    How are you going about treating this disease? Is a doctor helping you or are you doing it yourself through research? I'm in such a flare right now and fighting with my thyroid, that I don't know what to do.

    GBHope
  8. Mikie

    Mikie Moderator

    I find that I have a difficult time remembering things that happened when I was not well. Just today, I started to feel much better. I Herxed a couple of days ago and think that helped get rid of a lot of pathogen load. I do crossword puzzles and word games which really help the cognitive thing. I've just gotten into Su-Do-Ku puzzles and they drive me nuts. I have a love/hate affair with math :)

    Are you seeing an endocrinologist or is one doc treating you holistically? I'm sure you've talked about this but it must have been when my brain and memory were imparied.

    I've taken the oral GH and found it really helped me. It's not the Rx stuff, but if the OTC stuff helps that much, I imagine the Rx GH would really help. Like you, I saved the endocrinology for the end. I've spent so much time on the infections that I have yet to pursue the HPA. I do take Synthroid and HRT but that's about it for the hormones.

    GH is produced in our bodies when we sleep and exercise, so it may all come down to our quality of sleep. If we don't get our sleep, the GH production is sharply hindered and we end up with low GH. It would make sense that the longer this goes on, the lower the GH in the body. By the time one is sleep deprived and has low GH, one cannot exercise to produce more GH.

    I really appreciate all your info and am very happy that you are making such fantastic progress. Today is the 25th Anniversary of getting sick with the mycoplasma infection. I've been sick with infections for so long that I really have felt the need to address them. I strongly believe they are being eliminated or, at least, pushed into latency. As you said, they fight us just as hard as we fight them. An old sales saying is that the guy with the most bullets in his gun wins. Pathogens are like tiny terrorists in our bodies and sometimes, they outsmart us. I think we have to use all our bullets to conquer them.

    Yes, I did have to learn to be well again. When we start to heal, we want so badly to get control over everything. We've been sick for so long that there is pent-up desire bursting at the seams just to be well and normal again. The therapy really did help me to take these little setbacks in stride and not panic that I'll slip into grave illness again. Even when I'm in a slump like I've been lately, I'm nowhere nearly as sick as I once was and I don't believe I ever will be again.

    Keep us updated and thanks again for the info.

    Love, Mikie
  9. karatelady52

    karatelady52 New Member

    I've been going since April of this year. My progress has been very slow BUT I've gone from thinking I had to live with FM/CFS for the rest of my life to finding out lyme disease is the culprit.

    Lyme has compromised my immune system so much that I have 3 active viruses which we are also treating.

    They are treating all my hormones that are messed up from this disease with bio-identical hormones.

    I'm not yet at a place where I can say I'm getting well but from lyme boards that I've been on, they say it sometimes takes years to feel better. The longer you've been sick, the longer it takes to heal.

    I love the FFC's and think they are about our only hope right now until doctors start recognizing the seriousness of viruses, bacteria and toxins.

    Sandy
  10. elsa

    elsa New Member

    Mikie .... 25 year anniversary! I had no notion of the length of time you have been fighting the monster. What a testiment to your strength and determination!

    I have had things much easier than you. I don't think my infection/immune battle remotely came close to what you have had to experience. Comparatively speaking, I have been sick for a much, much shorter. Perhaps that explains the quick responses to the viral and immunity treatment I had.

    I've always read the shorter length of time one has been sick, the easier the illness might be to contain. I believe that may have some truth to it.

    In regards to my medical treatment questions .... First, let me say I have been extremely blessed from the start. My PCP doctor is a dream come true. Keeps up to date and firmly believes in the validity and seriousness of CFS/FMS.

    If he doesn't know about a certain aspect of these illnesses he'll come right out and say so ... no hedging or fibbing to cover up a lack of knowledge.

    I have a "team" of docs I put together. My PCP started treatment for viral infection 3 weeks after I went to him saying "I think I have CFS/FMS". I also found this support group during that time.

    So many of you members taught me about the different system dysregulations and what needs should be addressed. I have a ND that helped with the supplemental/nutritional/amino acid-neuro abnormalities.

    A FMS enlightened MD Sleep Specialist pin pointed my sleep disorder(s). The ND advised along side my Integrated Doctor on how best to utilize the Transfer Factors, whey and other immune system builders. The integrated Doc is handling balancing my hormones ... Is very educated in the HPA axis connection to CFS/FMS.

    All in all, the entire group played well with each other, not allowing ego's to get in the way of my health. Big blessing in that alone!

    It has seemed to fall in my lap in a nice neat package, but of course it didn't. Many hours here learning from those who went before.

    My mother asked me an interesting question last night concerning growth hormone .... whether it was something I would have to take indefinately or not. Who knows? Maybe when the true cause of the dysregulations are known and able to be corrected I'll be able to ease up on some of the treatments.

    Many people have been helped with GH stimulators. Apparently there is a % of us that need a bit more and are more dependent on rGH injections. What I find interesting is Bennett's recent study results .... finding absolutely no spike in GH 1 hour after exercise.

    Even if the stage 3-4 sleep disorder is corrected there is still GH dysfunction and deficit exposure. It is that aspect that makes me think that some of us will have to maintain the GH injections for an unforeseeable length of time. All in all though .... that last statement is nothing more then a guess on my part. So what else is new, huh?!

    GBHope .... This is about the best place possible to learn about the various ways people have found help. In general if you can find a medication regime that helps to stabilize you, you can then start to focus on the usually inherent problems that define CFS/FMS. Sleep disorder, weakened immunity and infection, hormonal imbalances (HPA axis) and nutritional/supplemental deficiencies.

    Some manage this through one doctor and others through a team of docs. It is vitally important that you are your own best patient advocate ... not just in treatment options, but in medications. (I include supplemental, herbal and amino acid therapy in the medications category.)

    You must spread all the "facts" out around you and decide what fits best with your expectations, personality and ideas of quality of life.

    Map a plan that works with and for you then have at it. Mikie and I are both hovering over strong remission but we got there in different ways.

    I hope all is well with you both ....

    Elsa
  11. karatelady52

    karatelady52 New Member

    We haven't talked about this for awhile. So exactly what benefits have you noticed now that you've been on HGH?

    I'm finally up to 1.5 and have been for just a couple of week. I will be starting my second vial/pen (whatever they call it) tomorrow.

    Question: How can you tell how much is in that last little bit since you can't see it? I was just wondering.

    My nurse said she has noticed some differences since taking it. She had eye surgery a few years ago and one eye was very puffy underneath. Almost all of that is gone. Her eyes are also not as dry.

    She said she has more energy too.

    I've been wondering about what your mother asked you -- will we be taking it indefinitely? Hmmmm...............good question.

    Sandy
  12. cherylsue

    cherylsue Member

    I am so happy to hear that you and others are improving, and although our conditions are very controversial, there are reputable doctors and clinics out there that are helping us heal.

    I've had two disabling 14 months long bouts of CFS in five years, so I know that I may get this again. Currently, I am in remission. (Although right now I'm pretty tired today from walking around the Field Museum in Chicago for several hours with my family. All those steps! Last year at this time I couldn't even walk to my mailbox!)

    Remission is attainable. I had viral induced CFS only, and was on medical leave for several months this year. It took a long time to recover, and I seemed to do better with supplements than the RX my Rush University doctor prescribed. I work in a school surrounded by hundreds of students. What keeps me protected is: 1. Sambucol (Elderberry extract) 2.ProBoost 3. grapeseed extract 4. D-Mannose 5. Daily squeezed lemon or lime juice in water.

    So folks, hang in there. Listen to your body. Do the research. There's a wealth of info on this board which helped me find my way, not to mention the wonderful support of those on this board. I don't see many of them here any more, so I guess they found their way and are doing much better, too.

    God bless,

    CherylSue
  13. mapleleaf

    mapleleaf New Member

    I am seriously looking into the FFC's. Since none of the FFC's are close to me, I was thinking of attending the FFC in Las Vegas (plus mini vacation). If anyone has experience with them, and travel suggestions, please let me know, I would appreciate it.
  14. keke1972

    keke1972 New Member

    I too went to the ffc in Philadelphia yesterday. The people there seemed very nice and caring. I will give myself injections at home since I do not live close by. I live in Northern, Va. I have to wait four weeks for blood work to come back. I hope this treatment works. I have been sick since I was 15 years old. I am 33 years old now. Part of me is scared that this may not work, but the wait is well worth it. Is anyone on here getting better? I haven't heard of any recoveries. Maybe because everyone has just started also? Take care everyone. Kristen
  15. pawprints

    pawprints New Member

    What type of injections did they give you to do at home? Just curious since I live away from the FFC I am being treated by.

    Thanks.
    Shana
  16. GBHope

    GBHope New Member

    I would like to see how you guys that are going to the FFCs are doing a little ways out. That is my next stop if this doesn't work. I want to feel well again.

    GBHope
  17. cindyrose

    cindyrose New Member

    hi, do you know what the exact blood tests they are doing? what are the 5 supplements they put you on and what were the scripts for? I live 500 miles from the closest center and thought that maybe my doc and a endocrinologist that's 1 1/2 hours away could figure out between them what to do for me. you can email me if you don't want the info on the boards. thanks, cindy. chite@classicnet.net. also if anyone else has any ideas for me I would appreciate hearing from you. I had mycoplasma pneu. in early 1980's while in college and wonder if this has any correlation to the fibro that I know I have had for 15 years, and now have myasthenia gravis which is an autoimmune disorder.
  18. keke1972

    keke1972 New Member

    The ffc I went to in philadelphia has me doing injections of B12, glutithione and I can't remember the other one. I think I spelled glutithione wrong? I will go and look in a moment and get back to you on that. I will find out about the blood work in 3-4 weeks. This will be done over the phone since I do not live close to the ffc.I can't remember all the blood tests the center did. I know they check for any viruses, adrenals, hormones, etc. You may want to give them a call to find out the exact blood work that is done. I know it depends also on the person, but for the most part a lot of what their looking for is the same for each person. I guess they may do extra blood work if things aren't working for you. Kristen
  19. ldbgcoleman

    ldbgcoleman New Member

    I am 8 months into my treatment and so much better at least 75% which is amazing. I am riding horses again and salsa dancing and having a great time. I am still achy and sore and some days a little tired but nothing compared to what I was.

    The mycoplasma could be part of the problem. I had that plus active EBV 16 times higher than normal from my testing. It is hard to say what your Dr should do because every person has a different set of problems and a different diagnosis treatment plan.

    I would start with testing the myco and EBV and the thyroid for Free T3 and T4. Also search Mikies posts. If you really want I can go through my records and try to give you the testing I had but some of it is based on your symptoms. You fill out a 24 page questionaire and spend an hour with the Dr before they order the bloodwork.

    Try reading Mikies postrs as she is doing many of the same things and figured the whole thing out for herself!

    Take Care and good Luck! Lynn

    PS I have met lots and I mean lots of people snce I started who have been going long term and are getting better! If you hae Lymes you will take alot longer and if you follow the protocal closely you will get better alot quicker. Just my observation from questioning and talking to people in the waiting room and while doing IVs L
    [This Message was Edited on 12/29/2005]