Discussion in 'Fibromyalgia Main Forum' started by morningsonshine, Nov 5, 2005.

  1. morningsonshine

    morningsonshine New Member

    Me again,
    Thank you for answering my other post, it will be helpful.

    I'm looking into the FFC, going to find out if insurance will cover anything.

    Question, how much better are you since you became ill, and how long have you been ill?

    Thank you for all the info. you pass on to all of us.

  2. Mikie

    Mikie Moderator

    In retrospect, I believe I have been ill all my life, but my illnesses were triggered full blown in 1990 when I got a mycoplasma infection. I eventually partially recovered but I was never the same. The docs at that time didn't know that only two cycles of ABX were insufficient to kill the mycoplasmas and they went stealth and chronic in my body. It took 2 1/2 years on Doxycycline to rid my system of them, or at least, get them down to a manageable number.

    About five or six years ago, I was in an accident which triggered my FMS symptoms on top of the horrible fatigue I had been experiencing. About six months after the accident, I was so tired and in so much pain that I could no longer work. I eventually become bedridden most of the time and on Morphine for the pain. It was during this time that I decided to turn to research and try to find my own treatments.

    The Guai was the first thing I tried. Of course, the Guai treatment takes a while and it was a good year before I didn't need the Morphine on a regualr basis for the pain. The fatigue continued to be a problem, but I have had some remissions from that. It comes and goes.

    Not long after I started the Guai, I stumbled into Dr. Garth Nicolson's research on mycoplasmas. Bingo! My doc wrote the Rx for the Doxy and on the third day, I Herxed and we knew we were on the right path. Like the Gaui, the Doxy is a very slow treatment.

    As I mentioned, finding the Famvir was a fluke but it certainly showed my docs and me that I most likely had reactivated Herpes Family Virus(es). I stayed on the Famvir 1 1/2 years, pulsing it off and on like the Doxy.

    I heard here about Hypercoagulation and asked my doc for Heparin. My SED Rate was only 2 (it had been as low as 1) and a SED Rate this low, while not definitive, is an indication that hypercoagulation may be present. I did not have the ISAC panel. Like everything else, all my treatments were empirical. I only did the Heparin injections for 2 1/2 months and started having bleeding at the injection sites. We decided that was an indication that I should stop them.

    Finally, I am pulsing the transfer factors (TF C and TF 200). The TF's have been especially helpful, along with colostrum, probiotics, and undenatured whey to help my own immune system to function.

    As to your question (you thought I had forgot :), today, I function at about 50 percent. Some days are good and some aren't. Right now, I am very fatigued and I think it's due to the hurricane which blew through here and stirred up a lot of nasty stuff. I am having to nap every day, which I haven't had to do for a long time. I still have days where I feel I need to rest all day long. Still, this is a huge improvement over where I was 4 1/2 years ago.

    Even with the most cutting-edge treatments, progress can be maddeningly slow. The FFC's are very aggressive in their tratments and I suspect that progress for their patients will be faster than mine has been. My regimen was developed through trial and error over 4 1/2 years. There was no roadmap when I started. I feel privleged to have been on the forefront of all of this and hope that my experience and the experiences of others will help pave the way for those who are seeking healing now.

    Thank you for your kind words; I do appreciate them. Being lucky enough to have found this website and the wonderful members here has helped me go from bed and narcotics to functioning almost normally some days. The least I can do is to tell my story and hope it helps.

    Love, Mikie
  3. morningsonshine

    morningsonshine New Member

    Thank you so much for sharing, I know it is an effort sometimes.
    I have stuggled from about 1992, and as a 21 year old mom. With Doc. telling my i'm crazy, go home and forget about it. Relied heavily on my faith. Finally diagnosed self, and a year later got a DR. diagnose, he told me to live with it. For me, it got better i was almost a normal person, i could hide it pretty well from others. Then 1.5 years from now i got hit really hard!! I thought i was going to lose it, have improved enough to barely take care of family, won't say what my house looks like!!LOL
    My friends now know i'm "weird" and my family thinks i need mental drugs.
    Funny thing is, my dog came down with lymes that same spring, hummmm, doc. say not possible i tested negative, for some reason, i just don't believe them.
    That post a while ago that upset some, about living in chronic pain, well, i'm finding that i do need to accept this, not to give in or give up, but to move on and do something about it. I've been in denial long enough, oh, it's not thaaat bad, i just miss out on all the fun thing my family dose. I stay home and sleep while hubby takes them fishing, and swimming, and etc....
    I want to get better, i know God heals, but i need to do my part, not all of gods miricles are instant. I have learned how ever, just how much i need him and how gracious he is. He is not the cause of my sickness, this sinful fallen world is, and i know i will be healed in this life or the next.
    Thank you for your love,
    you are a blessing,
  4. Mikie

    Mikie Moderator

    I guess each time I was getting an error message, it was actually taking my response. The board was not working well and I was having a horrible time trying to answer you.

    I don't recall the post you mentioned as I don't read many posts these days and my memory isn't good. You are right in that it can take time to achieve healing. Sometimes, it's so slow that one has to look back a year or so just to see the progress.

    I've never been a patient person but these illnesses have forced me to be more patient and not to expect instant panaceas. Like many here, my illnesses have just reinforced my faith in God. There is a reason for everything and all He asks is that I do my best.

    I just read something which I found so profound: Pain cannot always be avoided but misery is a choice. I'm not a Pollyanna, but I try not to let my pain and illness define my life. It's not always easy.

    Thank you so much for being so sweet. God bless you.

    Love, Mikie

  5. morningsonshine

    morningsonshine New Member

    I thought all those replys were cute!! I certainly didn't miss your message.
    I also haven't been a patient person, this DD is teaching me to be. (but, i'm a slow learner) I don't want to be a miserable person, I'm learning not to sweat the little things as much, they just don't matter. I rather love my children, then scream at them. (sometimes forget that)
    I like Pollyanna, just read it with my 4th grader for school.


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