Following the FFC posts, is anyone scared of all the meds/

Discussion in 'Fibromyalgia Main Forum' started by meowchowchow, Aug 21, 2005.

  1. meowchowchow

    meowchowchow New Member

    supplements you have to take? Also, 35 vials of blood or whatever seems a little excessive. I'm really wierd about taking any herbs or drugs and am afraid of a bad reaction or anything that might make me feel worse.

    Why are THESE doctors so much more up on our conditions than board certified physicians we might already be seeing? Not trying to play devil's advocate here, just normally cynical by nature I guess. :)

    How much does normal insurance cover for these visits? I'm getting desperate.

    Thanks,
    Meow

  2. LISALOO

    LISALOO New Member

    I've rapidly declined the last six months, so in my mind, it's worth trying. yes, I'm worried about things making me worse, I also have interstital cystitis that's finally under control, but I will continue to get worse if I don't trynew meds. And what I will take will be in response to what the FFC finds I need, so I can't get better by ignoring that. I won't take stuff that I don't need.
    [This Message was Edited on 08/21/2005]
  3. Sandyz

    Sandyz New Member

    They specialize in our illnesses and regular doctor know nothing about except some outdated information they learned in medical school. Most of them still think it is stress and depression and it is not. The doctor I go to at the FFC and Dallas has been treating CFS and Fm since the 80`s. They also know alot about hormones and the immune system which is a big part of our problem. Most regular doctor don`t know much about either .

    They really didn`t put my on a lot of meds. There is a big amount of supplements and bio-identical hormones because we are low in this things. You don`t stay on all that forever either it is build our systems back up to normal levels.

    There first step is usually to try and kill off the candida. Next they try to get hormones and the thyroid balanced and the immmune system built back up. They they got after the viruses and mycroplasma infections we have. The doctors I went to wouldn`t even treating my low thyroid even though they I have nodules all over it and it is enlarged. Your average doctor knows little about any of this really indepth stuff that we suffer from.

  4. matthewson

    matthewson New Member

    I am kind of leery of these centers. The amount of supplements they want you to take cost a lot of money! And though a lot of them it seems can be ordered elsewhere for less money, it sounds like some of them are only compounded by their pharmacists.

    Also the initial IV that was given, someone posted what was in it and lidocaine was one of the ingrediants. That could be why people with FMS felt so great after having it. Lidocaine is a numbing agent and hence someone's pain level would be reduced.

    And a lot of their treatment in my mind is controversial. I think a good Dr. who is willing to try different medications and things and is in your insurance plan coverage, would be a better place to start. I have found such a Dr. and he is willing to work with me on my treatment.

    Don't know. I am pretty conservative when it comes to Doctors, and I trust mainstream medicine more than a lot of folks here.

    Take care, Sally
  5. ldbgcoleman

    ldbgcoleman New Member

    The founders have FFC and CFS respectively. The Dr who started this spent years learning to treat himself. They also are compilng data from all of the centers to see what does and does not work. They are open minded about learning new things and will not give uup on you.

    Here are the prescriptions I am on: Thyroid for T3, Heprerin for Hypercogulation (temporary), Nystatin for yeast (temporary) Cybalta(I was on this before I started), Ambien ( I was already on this too.)Doxycyclene for Mycoplasma a bacterial infection (temporary), Famvir for EBV a viral infection (temporary)

    I researched every supplement online and ran them by my husbands best friend who is an MD. Most are standard lots of healthy people take them. Fish Oil, End Fatigue which is a daily vitamin, Melatonin, Jarro Dophilus (yeast), Garlic (yeast), Lumbrikinase (temporary hypercagulation)Transfer factor 4000, Ateminicin. Miyake Mushroom. I think thats it.

    It seems like a lot but most are temporary. The bottom lne is I feel a million times better. They are constantly tweaking things. I was just rested for everything I tested positive for initially. I will get the results and then we will adjust.

    I was skeptical too very! But what they were telling me made sense. They treated me like a partner in my recovery. I really had no where else to turn and I refused to give up. I have always relied on my husbands judgement and he also thought it made sense. His best friend who is a Dr is very impressed by the treatment. He told me Miyake Mushroom and Transfer factor are often used to treat immune problems like HIV and people undergoing Chemo.

    They do not push anything on you. Everything you do is by your choice. You can take everything at once which is what I did or ease in more slowly depending on whats right for you. They do not blow you off they listen to you and work with you. That has been my experience here in Atlanta. Hope this helps! Lynn

  6. ldbgcoleman

    ldbgcoleman New Member

    Yes Lidocaine is an ingredient in the back and muscle IV and yes it gives you relief. Much better than taking a pain pill as far as I'm concerned. As for the amount of supplements, I have perfectly healthy friend who take more pills than I do. Also there are Drs out there following simular protocols not affiliated with FFc. Lynn

    PS THe blood testing is to insure no stone is left unturned. The FFC does not make any money from the blood testing. I am glad because I am trying to get nto optimal health and I wnat to know exactly whats wrong so I can acheive that goal. Bring it on! [This Message was Edited on 08/22/2005]
  7. ldbgcoleman

    ldbgcoleman New Member

    I agree with Rachel. I am so gung ho because I feel so much better. I have hope and I'm making plans! I read the posts from those who have struggled so long and my heart aches. I want everyone here to have the same thing. When I read about the money issues I wish I were Bill GAtes and could afford to pay for everyone. The only way I know how to help the others here is to let them know how well my treatment is working. I am excited about it. Lynn
  8. Bambi

    Bambi New Member

    usually suggested herbs/supplements too, Q10 left me praying to the toilet and Melatonin and St. John's Wort the same. I have a whole list of things that made me vomit or like the St. John's not only did that but made me feel so wierd I can't find a word for it.

    BUT, I think that if something works for some of us then it would be fool
    hearty not to go for it. It does sound a little like the guinea pig thing, but isn't all treatment for these dd's?

    I will be more comfortable with ANY treatment when they can put a finger
    on exactly what is causing the problems in each person. Candida is still a somewhat iffy diagnosis and there are many who say there is NO
    sure test for Lyme even when the disease is active. But if people are feeling better and if the BELIEVE that the treatments are working they are half the way home. If I believe that the sun is shining noone is going to convince me it's not even if
    my clothes are getting soaked.

    I don't mean it's all "in the mind" but maybe some of it is. The point I'm trying to make is that if people believe it's working, if they feel better WHETHER it's real or Memorex is irrelevent. It may BE real and it may be mass hysteria, but who cares if it works!!
  9. ldbgcoleman

    ldbgcoleman New Member

    You can say or believe what you want but I have been to many Drs and participated in the clinical trial for milnaciprin why would my mind suddenly believe I would get better when I go to the FFC than with any of the other Drs.

    As for Candida and Lyme. You are right there is no definative test for Lyme. So whats your point? It still exists. If a patient shows positive in 3 or more bands they treat it. The main problem with Lyme is the false negative not the false positive. There is also no test for Candida. When you have recurring yeast infections that nothing will cure then what harm will the Candida diet and Jarro Dophilus do?? None. But they do clear up the yeast infections and in my case IBS.

    As for what supplements you can and cannot tolerate they will work with you on that. While I agree your mind and attitude have alot to do with getting better I have pages of lab results from Quest diagnostics and reputable labs with results they can "put a finger on"

    Low NK cell activity. These help prevent cancer and the test is quantitative. Mycoplasma a nasty little bacterial infection that causes walking pneumonia again quantitative, Adrenal fatigue, Thyroid both quantitative, Hypercoagulation which greatly increase your risk for heart desease, hypertention, stroke and clotting quantitative.

    The only two things I have been diagnosed with that are iffy are Candida and EBV. The treatment for Candida is harmless although it has helped me lose 25 lbs which is good for my health. My EBV came out 16 times higher than normal and I am taking Famvir for that.

    This is not some crazy place that takes alot of blood and runs on iffy treatments for quasiexistent problems. This is well though out treatment that PARTNERS with you to find the best combination of treatment for your specific problems.

    I am 43 and prior to havng my son 3 1/2 years ago and some complications with the pregnancy I was extremely healthy. Never been to the hospital except for childbirth and one minor car accident 15 years ago. Rarely got a coldor the flu. I traveled the country in a very high profile job. I am extremely well educated with an MBA and a music and education degree. I am a take action kind of girl. I was very depressed about this until my husband told me he was surprised I wasn't taking action on this like I do with everything else in my life. I spent two months doing reasearch and looking for the best solution before I went to the FFC.

    By the way the compounding pharmacy is not owned or operated by thye FFC. My sister in law is a pharmacist and she told me the reason for compounding is simple. No preservatives and fresher ingredients. The ingredients are mixed as you order them as opposed to sitting on a shelf for months.

    I'm sorry for the long response but I feel like you were making remarks and assumptions without having firsthand knowledge of how the treatments are established and how they work. I am very passionate about this because I have spent a great deal of time researching and talking with health proffesionals about it and again I am getting my life back and I want to share that. By the way I have enlightened a couple of Drs about this along the way and they have been very supportive. I have sought the opinion of my husbands best friend who is an MD in Tampa and he has been extremely positive about the treatment I am getting.

    By the way search the board and see if you can find one person who is seeking treatment at any FFC and has posted anything negative about the results they have been getting. Questions maybe, impatience maybe, but so far everyone seems to be excited about the treatment. The only complaints I see are expense.

    Take Care Lynn
    [This Message was Edited on 08/22/2005]
  10. Dee50

    Dee50 New Member

    Insurance does not cover anything I'm doing. But.. slowly I am getting better :)
    Hang in there and keep an open mind don't get fenced in.
    Dee50
  11. ldbgcoleman

    ldbgcoleman New Member

    I really don't want to step on any toes and I am open to others opinions. I just feel strongly about this topic!
  12. meowchowchow

    meowchowchow New Member

    Thank you all for your thoughts. I'm very interested in the FFC...just sick of being disappointed, hoping I'll get better and then nothing. I'm going to look into the FFC here in Atlanta.

    Do they take ANY insurance? Does it at least pay part?

    Thanks,
    Meow
  13. razorqueen

    razorqueen Member

    I've been reading so much about this center, and I'm in Canada, have no insurance, and no abundance of cash available to me. But is sooo wish I could go.
    Sigh,
    Raz
  14. meowchowchow

    meowchowchow New Member

    I must be ignorant! I for some reason thought that Canada had some type of national health service?
  15. karatelady52

    karatelady52 New Member

    I agree wholeheartedly with Lynn.

    I went to doctors for 30 years with this ailment and that ailment. No one ever tested me for Lyme or for viruses. The extensive blood work at the FFC rules out a lot and pinpoints exactly what the problem is.

    All my other doctors just said, yes its FM, there isn't a whole lot that can be done, take this sleep medicine and try to relax and not be so stressed, pain meds for the pain, accupuncture, massage, trigger point shots, and the list goes on and on.

    Of course, none of those things are going to help one bit when you have viruses and, in my case, Lyme disease.

    I love the FFC --- Dr. Bullington is wonderful and will work with you, the staff are so nice and always ask me how I feel. They seem genuinely interested.

    Sandy
    p.s. Dr. B. always says,"I don't know how your budget is but at some point we need to do this or that." In other words, they are concerned with the cost.

    They also have never pushed anything on me. I don't take the IV's because for me, they didn't help. Not with Lyme anyway but I think, as we tackle that problem, the IV's will be a plus later on.
  16. razorqueen

    razorqueen Member

    we have one. It pays for dr visits, (regular Drs, not Homopathic Drs, or Chiropractors,) We pay for our medications up till we reach our deductable, which is different for everyone because it goes according to your yearly income. If you are fortunate you may have health insurance if you work at the right company, and then get your medication, dental, massage, chiropratic cost covered, at a premium of course.
    My husband started a new business and we no longer have any extra health insurance, so now all our meds, and my massage and chiropractic treamtments has to come out of our pockets. Makes things a little more interesting, thats for sure.
  17. rileyearl

    rileyearl New Member

    I guess I'm a little nervous about the treatment, but I'm really scared about going on feeling like this for very long.

    When I called to make the appointment, I chatted with the scheduler for a few minutes. Dr. Marti is the only doctor there. She used to be in Family Practice. They are going to send me a 24 page questionaire to fill out before I go. Just reading the 24 pages sounds like a committment on their part.

    I mentioned before that I'm new to being diagnosed, but after learning a little about FM, I'm sure I've had it at least since I was 15, possibly longer (I'm 52.) I don't want to spend years having tests and searching for a doctor who gets it. Maybe I'll still have to do that, but I'm making FFC my first stop.

    Thanks again to Rachel for all the good information. I'll let you all know how it goes for me.

    Francie