FFC today was first appt in Clev.

Discussion in 'Fibromyalgia Main Forum' started by vp, Dec 5, 2005.

  1. vp

    vp New Member

    Everything went pretty well, other than I overslept by an hour, and had to take another route to get there due to traffic backup.

    First I had the appt with the Dr. Juguilon. The physical part of the exam was extremely painful. I was never properly checked for the trigger points for FM. Oh my, did that get my attention!! There were only a few that didn't rank at a 10 or above. It seemed like she had an ice pick in her hand. Either it hurt like mad, or not at all. Is this typical? The rheumy that diagnosed me obviosly didn't know what he was doing, or my symptoms have changed dramatically. It felt more like a bruised feeling before not sharp stabbing I felt today.

    They took 24 vials of blood to test. No problem there either. I get the results in 3 weeks.

    I had the standard IV and the muscle IV. I tolerated it better than my boyfriend did. He said the "creamed corn" smell was disgusting. He couldn't wait to get me home and out of his car! It took 45 min. or so to get it all in and only hurt a little for the last few min.

    Now for the list of supplements:

    CoQ10 Max 400 --- 1 daily with meals

    Enada NADH 5mg ---1 2x daily 30 min before meals

    Enzyme Rx --- 1 3x daily before meals

    Maitake Mushroom D-fraction --- 2 2x daily

    Melatonin 3mg--- 1 at bed

    Mitomax NT --- 2 3x daily

    Super Multiple without iron --- 3 daily with meals

    Maitake mushroom is one I havn't heard of before. I searched for it on this site, and there were only 2 poeple who mentoined it in their title. Just curious if anyone else has used it, and what benefits if any. I'm surprised with so many trying the FFC, no one else had mentioned it. I didn't think to ask why it was recommended at the time. The paper I got with my supplements says it is used to enhance natural killer cell number and function.

    Anyone have any suggestions on what ones I should start with? I'm planning on starting the melatonin tonight and the multi-vitamin tomorrow morning. Not sure what order to phase the rest in, or if it really matters.

    I'm gonna go rest now. It has been a long day.

    Valerie





  2. vp

    vp New Member

    Thanks for the advice. I agree, they are all too expensive to waste. I spent over $800 today, with everything. Good luck to you!!

    Valerie
  3. karatelady52

    karatelady52 New Member

    If I'm not mistaken, I think Dr. Juguilon is one of the best of all the doctors. I thought I had read that on this forum.

    Your next visit will be the eye-opener when you find out how all your hormones are doing. Even though all my other doctors before the FFC said my thyroid was ok, it wasn't. The bio-identical hormones have helped me a lot.

    Then, when they test you for viruses and bacteria --- that's where you get to the root of it. (You probably know all this from other posts.)

    If you have trouble with pain and/or anxiety, I don't know if that came up in your conversation but these centers are so good about helping us with pain meds without making us feel like druggies. I found once I started on my abx (for lyme and viruses) I really needed the pain meds because the herxing got a little rough for awhile. Also, lyme causes a lot of anxiety so they've just recently given me Xanax for that. I know its all temporary so I don't mind.

    Just give everything time --- this is not a sprint but a marathon. Welcome aboard!

    Sandy
    p.s. You may need to do something with that boyfriend maybe fix him a creamed corn casserole for dinner!
  4. vp

    vp New Member

    I can't wait to see the lab results. I also can't wait for my next visit with my PCP. I'd like to open his eyes a bit too. Maybe more people will benefit down the road if we can:
    (1)get other doctors to admit that there are good reasons to do more extensive lab testing when symptoms don't match test results. (like so many stories I've heard here, and expect mine to be added to the list)
    (2) the doctors can convince the insurance companies that these tests ARE necessary.

    It just seems that the FFC has more freedom to treat us effectively because they don't have to answer to ins. companies. Anyone else see it this way? or am I just bitter toward ins companies?
  5. kch64

    kch64 New Member

    Maitake, and several other mushrooms, have been studied and have an immune boosting property to fight illness.

    That's why you got this. Hope I helped a bit and I wish you speedy feeling of better health.

    Kendra
    [This Message was Edited on 12/06/2005]
  6. jane32

    jane32 New Member

    I love it. I take 10 mg when I first wake up. Remember to stay away from all acids though for 3 hrs. thi includes OJ and Vitamin B and anty other vitamins that include acid. I had to change my dosing schedule around it but it is worth it.
  7. elsa

    elsa New Member

    No, you're not bitter towards ins.companies .... They do control quite a bit. It is the organizations that manage health care that have created serious problems. They idea was good, just fell sort of the mark.

    Whenever I read of people being angry over a test their PCP will not run ... I wish I could remind them that the doctor's signed an agreement with the managed care organization ...IE insurance company. They (doctors) have some explaining to do to the people who sign their checks why they ordered a free T3 and Free T4 and reverse T3 on a patient whose initial thyroid TSH test came back normal.

    In alot of ways the doctor's hands are tied ... forcing them to treat by the numbers on the test results and not by clinical medicine.

    Course, some doctors are jerks, but many of them don't have alot of options in testing / agressively treating CFS/FMS. .... Their managed care "bosses" won't allow them to. Keep in mind that this new branch of health care came into practice to keep testing prices down and discourage unnecessary surgeries and other proceedures.

    So .... No, you are not crazy and the FFC can treat their patients any way they see fit and spend as much time and testing with each individual that they feel they need to in order to improve their health. It's called fee for service and at this point in time I'm liking it. It costs me more, but I get a vote and definate say so in what goes on with my care. (I'm not an FFC patient, but have similar circumstances.)

    Course, what would really thrill me is the best of both worlds. Anyone have any ideas on that one? I do feel that we get what we pay for .... Just wish the price was alittle lower. LOL

    Take care,

    Elsa
  8. vp

    vp New Member

    Thanks for input on ins. companies. I agree 100% I'm at a point where I don't care haw much it costs, of who pays for it--me or ins. If I feel I need meds, suppliments, tests, etc. I'm going to get them. I'm tired of strangers without a medical degree who haven't walked in my shoes telling me what I need and what I can and can not have.

    I've been having trouble with Ohio medicaid recently. I've been on ambien for 9 mths. I can't survive without it, I've tried. I have chronic insomnia, and no sleep sends pain levels through the roof. All of a sudden medicaid decided they will no longer cover ambien, but would cover Lunesta. I tried it for 3 nights.Didn't work at all, and the metallic taste and acid reflux was unbearable and lasted 24 hours. I asked the dr. to call in a preauthorization for ambien. She said I would have to give Lunesta at least a week first(ambien was #6 in a list of meds I tried for sleep over the last 1 1/2 years), but she would send a letter and call. This was after I told her of the problems I had with it. I got 6 samples of ambien CR to help get through the waiting period (I prefer regular ambien), and have bought 37 ambien so far (at approximately $5 a night)So frustrating. I can see insurance companies requiring generics where available, but Lunesta and ambien are not the same chemically.

    I'm done ranting now. I put my boyfriend on the job, maybe he can find out why it had been 43 days to get the ins to go through. He's more assertive than I am. Anyone know if they will reimburse for the days I paid for out of pocket?
  9. hopeful4

    hopeful4 New Member

    vp, you're off to a great start in Cleveland with Dr. J. I went there for several months until an FFC opened up closer to where I live. Congratulations on your first visit.

    I used Maitiake, I think it was D-fraction also, while being treated for breast cancer in '03. Now I'm wondering about going back on it as an alternative to the NK Stim I'm using from FFC.

    The NK Stim is also an immune booster, and NK booster, but it's very expensive ($68/month), and with everything else I'm taking, and some financial changes in life, I thought I'd look for something more affordable. I haven't found the Stim anywhere for more than a dollar or two less.

    Can you tell me what the brand of Maitake is and how much it costs? I've found some maitake online that are reasonably priced and good quality.

    Thanks for your help, and best wishes on your journey to healing.
    Hopeful4
  10. hopeful4

    hopeful4 New Member

    Bump for vp ;-}