Discussion in 'Fibromyalgia Main Forum' started by scotlandrose, Aug 2, 2006.

  1. scotlandrose

    scotlandrose Member

    can anyone help me please.? I live in Nashville and cannot get to an FFC often enough. I have found a doc here who is giving IV treatments to all kinds of patients. He has Meyer's, Vitamin C, PC, Glutithione, and a few more. Does anyone know what was/is in some of the iv's at the FFCs? PLEASE HELP ME. He is willing to give me what I need, I just need to give him some starting info.

  2. aklucky113

    aklucky113 New Member

    I thought the center would talk to your doctors for info - I'm pretty sure I read that in their discription - Why don't you try to call - even without giving your name if you want - and ask them about that.

    I hope with all my heart you feel better soon - I have an appt with them on 8/7 - I will relay as much info as possible
    Wish me luck and strength
  3. ulala

    ulala New Member

    call them and ask what's in the IV's. I think the Meyer's cocktail helps a lot with FM.

    Did you have any IV's at the FFC or did they tell you that you needed any specific IV's? Everyone's needs are different. The IV that you need may not help someone else.
  4. hopeful4

    hopeful4 New Member

    Different IV's are appropriate for different people. I had two different IV's at FFC.

    The first one was the Oxidatative IV. As I recall it had hydrogen peroxide, DMSO, and magnesium. It completely eliminated any pain and joint stiffness, and increased my energy and mental functioning. It was great! The effect lasted 3 weeks.

    I did have a second one, it also helped, the effects lasted 1 week. I was sorry to learn that the FFC had discontinued the Oxidative IV due to some problem they were having with the supplier.

    So, the third time I went to the FFC for the IV therapy, they suggested the Superviral IV. This is made up of licorice and glutathione, I think. It is anti-viral, anti-fungal, anti-inflammatory. They have had a lot of success with patients using this. But for me, I didn't notice anything at all, and due to the cost did not continue.

    I think with this IV, and maybe the others, that having them on a regular basis does eventually help.
  5. wkirk87

    wkirk87 New Member

    Are you guys talking about the IVIG gamugobulin infusion things? If so, they don't work that well and aren't at all worth it. You'll feel bad for four or five days, then good for two or three weeks, and each time you do it the effect it has weakens a lot. Go with Provigil if you can instead. Either way, good luck.
  6. TXFMmom

    TXFMmom New Member

    I am a former CRNA and Advanced Nurse Practitioner, and when I went to the FFC, they wanted to give me IV's.

    They just said, some were for memory, some for immune, some for this and some for that.

    I said, well, what's in them. They didn't have to tell me the whole thing, as to mg. or whatever, just what was in them. They refused. I said, well, you're not putting anything in my body without my knowing what it is.

    They said it was proprietary, I said, so is my body.

    They were really angry when I said no IV's.

    I wouldn't take a medicine without knowing what it was, why an IV?

    It was unethical to expect it.

    I just had all my immune rechecked because of repeated infections with DR. Salvato, and I need the series of one a week for four weeks of IVG, and the stuff costs $40,000 for a series!!!!!!! I was knocked off my socks.

    We just changed insurances on Tuesday, and we have the labs, which were done last week, to validate it, and they should be okayed, but it can take four weeks to get the approvals.

    Medicare is my secondary, and they will pick up co-pays, etc. but their reimbursement for the IV's is less than they cost, on an outpatient in the office basis.

    Does anyone have any experience with getting them from their docs on Medicare or did they have to be admitted and get it then?
  7. wkirk87

    wkirk87 New Member

    Oh, mine were for immune system. Anyways, they really, really **** compared to Provigil. Provigil's the best treatment I've used so far out of Prosac, Welbutrin, IVIG gamugobulin infusion, and Cymbalta. Massage and acupuncture seem to help some too, and from what I've read massage is 100% neccessary if you have the fibro part of the CFIDS/FM.
  8. mrstyedawg

    mrstyedawg Member

    When I had my IV (meyers cocktail) they gave me a list of everything that is in it. Your doctor should definitely do the same for you. When my doctor found out how far I had to drive to get my IV, she told me that it was ridiculous me driving so far and she found a doctor for me to see that is way closer to my home.

    Explain to your doctor how hard it is for you to make the trip and how sick you get and that you want to have the IV closer to home. Play on their sympathy.

    Good luck,
  9. JulieO

    JulieO New Member

    ...or should I say I think they'll tell you. If not, let me know & I can ask when I go to my next visit. I tried them for a while & they didn't help me so much that I could tell. (Tried the one for pain, memory, something else) Then I had a series of the anti-viral ones (hydrogen peroxide).

    I also just went to their Web site to see if info was available there & notice there is a live chat feature where you can speak with a representative. Might be worth a shot.

    The nurses at the FFC I go to have given me the ingredients before & I don't remember what they are...also they made a change to some of ingredients in some of them a while back.

    Good luck to you!
  10. pam_d

    pam_d New Member

    I have never been to any FFC, so I'm certainly not the one to comment; I know others here really love the help they've gotten from them, and if it's working, I say great...

    But I'm just wondering if ANYONE (undiagnosed as yet) ever goes to the FFC and is told they DON'T have CFS or FM, or some other dx they treat. My hunch is they don't turn anyone away as long as they can pay for the treatment...

    But who knows? I certainly wouldn't want to be given IVs of anything I didn't know the contents of, though...don't those who are PAYING them deserve to know what they are injecting into their bodies???

  11. scotlandrose

    scotlandrose Member

    I am just trying to collect info on IV therapy in general. I have been to 2 different FFCs. I followed Dr. Sharp to the one in Ft. Worth, and tried the one in Atlanta because it is closer to me. You couldn't pay me to go back to Atlanta FFC, and Dr. Sharp left Ft. Worth FFC. I have followed Dr. Sharp again, I would follow him anywhere. Just getting info on IV therapy that I can get near home. With this disease, I follow Dr. Sharp's advise as closely as possible, but I am always looking for new things. I always ask questions and try to get new/more info.

    Thanks again for the info. It has answered my questions and filled in the holes in my info and opinions.

  12. cherylsue

    cherylsue Member

    Hydrogen Peroxide IV's have caused serious problems and even deaths in some cases in the past. I believe these are generally banned in the U.S. They are no longer used by the FFC's.

    Hydrogen Peroxide IV's can cause strokes and blood clots.[This Message was Edited on 08/09/2006]
  13. place

    place New Member

    The following is just my opinion, please take it as that, I am not a doc nor do I play one on TV!

    I just started to go to one of the Former FFC doc's, Dr. J in Cleveland.

    I have really enjoyed the thoroughness of the testing. I just had my second visit.

    I was hoping to have some nutritional deficiency that could be easily solved if I just at more spinach, but I am fortunate enough to be fine in that department.

    The testing really gives you a big picture and details of your body chemistry all on 5 pages.

    Thought is was wonderful (as the body systems are all inter related) to be able to analyze and hypothesis possible causes based on the result of different tests.

    I am not a huge fan of supplements (as most, but not all, have not worked for me) but if the doc recommends them, I take them.

    If you can get your insurance to pay for the tests, I think it will be worth the extra money for the doc’s fee and supplements.

    However, if you don’t have insurance, I would not waist your money on testing and spend it on medication instead.

    If you can get a doc who is open, have him start you on a doxy treatment for lime/micro. You may also want to try an antiviral, if after 2 month you start to feel better, you know your on to something.

    Most importantly, I would try Xyrem for your sleep. If I could only purchase one drug, that would be it. So many have tried it and been extremely successful.

    Good luck!

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