for cindycor

Discussion in 'Fibromyalgia Main Forum' started by bpmwriter, Jan 18, 2006.

  1. bpmwriter

    bpmwriter New Member

    i read in another post that the ffc wants you on doxy for 2 and a half years?! can you remind me, were you diagnosed with lyme, mycoplasma or both? if mycoplasma, what did your test results look like??

    hope you've found the right dose and are tolerating the abx well,

  2. pumpkinpatch

    pumpkinpatch New Member

    I've been having problems with the high levels of antibiotics, 4- 100 mg. doxy and biaxin and had to cut back. Mikie was on doxy for 2-1/2 yrs. not what the FFC predicts. Everyone is different.

    I tested high for candida, cylmedia pneumoniae and IND lymes. My pneumoniae results were high at 2.05 and I had positive and IND bands for lymes.

    Also thyroid and adrenal was really out of whack. My Reverse T3 was 501 and adrenal was severely high especially in the morning. Lab had never seen a reading like that.

    I've been struggling and living in Canada I wait for the supplements and thyroid T3. It will take me longer.

    The FFC is sending me the kit for heavy metal and more T3- 37.5 mcg. this week. I realized the T3 was helping since now my body is on fire and not sleeping.

    I think it's a theory of everything working together with the antibiotics.

  3. bpmwriter

    bpmwriter New Member

    they never tested me for the chlamydia pneumonia, only mycoplasma. i wonder if it's worth it to go back and request a c. pneumonia test?

    i can understand how you would miss your t3. in my opinion, it was definitely one of the best things about the ffc protocol. i just had some follow-up bloodwork done through my pcp, but he doesn't test for the t3/reverse t3, just t4 and tsh. i'm currently taking an adrenal glandular product that contains small amounts of thyroid glandular. if you ever go off the hormones but still feel you need some endocrine support, you might try a glandular product. they're supposed to support and rebuild the malfunctioning glands.

  4. pumpkinpatch

    pumpkinpatch New Member

    With the high adrenal the best thing is try to reduce stress. Plus I'm waiting for the xanax. Suppose to take 3 per day. Boy I'm waiting on alot right now! Anyway I think all these infections cause stress on my body along with the self-anxiety levels.

    I didn't have the mycoplasma blood test done but even if I did the doxy will help that which I'm already on.

    I've also started digestive enzymes because I don't think I was absorbing all these supplements. My stomach has settled down.

    Dr. Labair has also ordered neurotonin and effexor (excuse the spelling). Also I've been on an anti-inflammatory drug.
    Trial and error but I'm determined to find what works for me.

  5. darude

    darude New Member

    Glad to hear from you. I took Xanax in the beginning and it really helped. Doc here will give it to you no problem. It does take away muscle aches and helps you sleep. I also took Ativan which is in the same family. Hope it helps you and yo get it soon,
  6. pumpkinpatch

    pumpkinpatch New Member

    Nice to hear from you. I saw that you were looking for a lymes doctor. I talked to a girl from Calgary who drove to Hope, B.C. in Oct. to see Dr. M.

    He is there every Sat. morning until 12 noon. She said it took 7-8 hr. drive and she is being treated with antibiotics and starting to feel better.

    She said she went to so many doctors in the city and decided to see a lymes specialist.

    I still like the FFC theory of treating everything at once but my options are still open for Dr. M.

  7. bpmwriter

    bpmwriter New Member

    have you considered lyrica? i've tried both neurontin and its successor lyrica, and lyrica is light years ahead of neurontin in terms of the side effects profile. neurontin's nickname of morontin is rightly deserved. it made me feel dumb as a stump and may increase brain fog. the lyrica comes with all the benefits, good for anxiety, pain and sleep with less side effects. for some reason the ffc's don't seem to be up to date on lyrica as i got a script for it from dr. b in atlanta even though she had never heard of it! it's still off label for fibro, maybe that's why, but if you have insurance? (it's pricey), lyrica is the way to go.

  8. pumpkinpatch

    pumpkinpatch New Member

    I just checked and can't get lyrica here in Canada. Not at the pharmacy I deal with anyway. Thanks for the suggestion.

    I figure if I keep everything up by summer I should be seeing some improvements. Just a few dips along the way.

    I had more bloodwork taken a few weeks ago. Will be seeing those soon.