fibromyalgia center

Discussion in 'Fibromyalgia Main Forum' started by slpal, Sep 1, 2005.

  1. slpal

    slpal New Member

    Hello- I hope someone can shed some light on this-
    I have been going to the fibro center for a short while and while I appreciate how comprehensive they are, at the same time I am baffled how one person can be on so many supplements at once. I am taking meds 7 times a day at this point- is this typical??

    Also I am upset with the fact that I have been prescribed cortisol and fludrocortisol when everything says not to take these with fungal infections- ( i am being treated for candida)the dr said that I may need to be on these for months to a year and my concern is that if I treat the yeast now it will only come back at a later time due to taking these meds- I am on so many supplements such as mushroom extract (which I am again concerned about with candida) and many hormones, transfer factor,etc

    In addition to hormone imbalances I was diagnosed with mycoplasma and cylmidia pneumoni and need to be on antibiotics for this- I am so upset because I feel that antibiotics were what caused my candida

    I am killing myself in terms of diet and will be taking so many things that are going against this candida infection

    Also- I am very worried about possible side effects of these meds as they say they can cause weight gain and anxiety and depression- I can do that easily on my own!!

    I am happy with the comprehensive nature of the center but feel like some things being treated are making other things worse and the dr does not seem overly concerned about this-
    I am also being further evaluated for heavy metals
    I need someone to shed some light on things- does this sound familiar to anyone??

    thanks so much
  2. slpal

    slpal New Member

    thank you for your input!
  3. slpal

    slpal New Member

  4. slpal

    slpal New Member

  5. Rose_Red

    Rose_Red New Member

    I'm going to guess that you have a male doc. In the rand scheme of things candida is more of an annoyance than a 'needs to be treated right away' medical problem.

    The first thing I'd do is stop the mushroom fungus supplement, cut way back on yeast leavened bread, cut out beer altogether (I cried over that one!), and start taking Probiotics 0 Acidipholous (sp?).

    Yeast sux! My tonsils were infected for a year. I was on antibiotics for a year because no one thought to look down my throat. Instead I bounced from spec to spec looking for anything and everything except my tonsils. I was in the ER on IV antibiotics and no one looked down my throat....

    Back on topic now - I still rant about my tonsils. I kept telling my docs about the yeast and they weren't real concerned. They were more interested in my 104* fevers.

    I bet if it was one of their wives they'd be really interested in fixing it!

    It took 2 years to get it under control. If I test positive for mycoplasma I will glady go back on the antibiotics but I'll treat the yeast simoultaniously.


  6. slpal

    slpal New Member

    thanks Michelle-

    actually my dr is a female and I spoke to them about mushroom extract and they don't feel that it's a problem eventhough everything I read says it is so bad for candida. I am actually on the acidophilus already

  7. karatelady52

    karatelady52 New Member

    I am going to the one in Atlanta and am taking tons of supplements so I sure can sympathize with you.

    One post said most doctors don't think of Candida as anything other than an annoyance but the FFC's take it very seriously. Part of the long questionnaire they have you fill out and add up the numbers is for the Candida diagnosis.

    I'm taking antibiotics (which I absolutely hate) and I make sure I take my probiotics either 2 hours before or 2 hours after. I've had candida for years so I'm also doing the balancing act of keeping that under control while killing the Lyme and other viruses I have.

    I was taking the Jarro-Dophilus when someone on this board mentioned that Primal Defense by Garden of Life was a much stronger probiotic. I am now taking it instead.

    I hadn't heard that about the Cortisol which I am taking also.

    Just remember all those supplements you are taking won't be forever. When your immune system begins to kick in, you won't need as many of them.

  8. Jeanne-in-Canada

    Jeanne-in-Canada New Member

    or overkill perhaps, where they half kill you trying to treat you. I've told my abx story many times, so I'll sum it up by saying I was talked into taking it for 2 mycoplasms, despite that I already had a candida problem. It turned out bad, real bad. Now I have chronic vaginitis I never had before, I can get it under control for periods of time, but have never been as carefree (esp. w/ my sexlife as I once was).

    I like what someone said about if a doctor's wife got it, they'd get concerned in a hurry. Damn straight they would.

    For the person who would go on abx again, but treat candida simultaneously. I did attempt to treat it simultaneously and I know quite a few tricks, none worked. Then when the doc put me in this condition, you think I could find one that could help me get out of it? Nope, again, had to figure that out on my own. I could write a book by now.

  9. lilbird

    lilbird New Member

    I have been going to the FFC in L.A. for 9 weeks. now. I too am on lots of suppliments. From what I am hearing most of us going to the FFC are.

    I would talk to the Dr. about your concerns with the yeast. My understanding with the FFC is they are treating the whole body. If one thing is off it will through everything off and you will not get well.

    But do talk to your Dr. She will probably be able to provide a good explanation.

  10. Jeanne-in-Canada

    Jeanne-in-Canada New Member

  11. deliarose

    deliarose New Member

    so what do you do to treat your candida? I've been reading this thread and I'm currently on an anti-candida diet... but in light of what folks are saying about the FFC clinics I'm wondering if I'm wasting my time, and if only antibiotics will kill off the candida?

    Thing is, I'm very reluctant to take antibiotics.
  12. ImDigNiT

    ImDigNiT New Member

    I live in Florida but just came out to Denver to the FFC. I have not received any of the labs back yet ( they took 35 vials, did anyone else have that much taken at one time?)

    I too am on so many supplements and regular prescriptions it is unreal. I still waiting for them to kick in.

    When I go back on the 19th of Sept, I will have additional blood work and they will be checking for lymes and ebv etc.

    Did anyone else have this experience and the FFC?

    Sorry I could not help anwser the initial question but I you get answers soon.

    Peaceful mind and body to all!
  13. flip30

    flip30 New Member

    Where are these FM centers? Have a lot of people here tried these?
  14. pumpkinpatch

    pumpkinpatch New Member

    I also flew to the Denver clinic in June. Sounds like we're all in the same boat with all the blood they take and the meds , vitamins and supplements they recommend.

    I'm now into my third month and I'm seeing slight improvements ie. less dizziness, more energy, more relaxed, head feels clearer etc. They pain and stiffness is still the same but I'm trying not to take too many pain meds. I know it took years to get into this condition so I'll take the slow increments. Even if I don't get back to 100% at least I can function with my family and not bedridden.

    Nice that we can discuss our treatments and compare notes. I find this very helpful.

    My next appointment is Sept. 22 and will be getting the results back from my most recent blood labs.

    Marcia: Did you see Dr. Labair. She has an interview on the clinic website. I like the fact she's so open-minded and we can work together. She is on holidays for 3 weeks.


  15. Rose_Red

    Rose_Red New Member

    The antibiotics are a major cause of the candida yeast. You'll need an antifungal pll or cream or even nystatin mouthwash (swish & swallow - yuck) to help kill the yeast.

    The acidipholous probiotics are great. My GYN put me on a "High Yogurt Diet" all that did was help me to gain 10 pounds. If the yeast gets real bad I'll have the yogurt but normally the probiotcs are enough. the other thing that helped tremendously was boric acid suppoitories. (yes, they go 'in there'). I got tired of paying $20 for 15 of them so I bought some gelatin capsules and a bottle of boric acid that I don't think I'll finish in this lifetime for 1/2 of what 15 pills cost.

    the trick to the boric acid suppositories is to insert them AFTER you lay down for the night and to only insert them HALFWAY in. If you're horizontal it'll spread out. If you put it way in there it'll collect around the cervice and create a breeding ground.

    If it's not one thing it's another.
  16. ImDigNiT

    ImDigNiT New Member

    No, Unfortunately she was on vacation. They have a new Dr. at the clinic along with her, her name is Dr. Deborah Sainer, MD.

    She seemed very knowledgable and has been practicing at the Denver Clinic for one month.

    I have been faithfully taking all of the supplements and the prescription meds (Soma, Klonopin and three compounded meds) along with cymbalta, effexor, xanax which my general physician prescribed and have cut out Robaxin and and synthetic hormone along with Elavil.

    I sure hope this works. And like you Cindy, I know it took us awhile to get this way but, please, I pray for some relief soon.

    By the way, when you received your first labs back did they find anything specific?

    I can't wait to hear from you.

  17. HppeandMe

    HppeandMe New Member

    Hi there-

    I also go to FFC and I have been diagnosed with everything everybody else has and I am taking close to 50 pills a day. How can we all have all of the same things going on? I see a lot of people have been going but I haven't heard of a lot of success stories here. I would love for someone to share a long term success story about FFC with us.

  18. bioman85

    bioman85 New Member

    run a search for FFC
  19. bpmwriter

    bpmwriter New Member

    i'm trying to make some very tough decisions right now regarding my treatment through the ffc. the last i spoke to dr. b in atlanta, i told her i wouldn't be able to check again in for about 3 months. i noticed some significant improvements in the first couple months due mostly i believe to the hormonal boost, but last month (my 3rd), was just terrible. basically, all my old symptoms from a year ago when i first got sick have returned, and i have new ones too including daily allergy symptoms and chest / shortness of breath problems which i haven't experienced since i was a child!

    eventually i have to go back to work, my money's running out from paying for this treatment, but i can't fathom a job at my current unpredictable level of functioning. i know a lot will say it's a healing crisis, hang in there, you feel worse before you feel better, yada yada yada, but i'm slowly losing faith. like most of you, i'm taking a gallon of supplements a day and i feel nowhere near as good as i did on a lose dose ssri and weekly acupuncture treatments. the zillion dollar question is, do we remain in a state of ill health if we focus only on the things that make us feel better? do we go at this illness all guns blazing and risk going down in a hail of bullets, or try to get comfortable and find a way to live with it? i'm starting to lean towards the latter.

    the doc says it sounds like i'm toxic. duh! so my next step is to attempt the questran detox. but i'm weaning off the immune support supps and anti-viral before i do that even though she thinks i should stay on them. i believe we have to respect the limits of our own bodies. and i really feel lately like i'm punishing my body for getting sick on me rather than loving it.

    ok, sorry for rambling, but this all weighs heavily on my mind lately.

  20. pumpkinpatch

    pumpkinpatch New Member

    I understand totally your situation. This route is very expensive and no guarantees. Many bullets to dodge in the process.

    We are only at the beginning stages with the clinic and improvements will be slow and we will be up and down. Just wish I had a magic wand to be better overnight. I do know when I stress and worry I feel worse. That's probably why my Reverse T3 was so high.

    Just to let you know we are here and you are not rambling.

    [This Message was Edited on 09/06/2005]