Why does my fibro feel better when I'm on antibiotics?

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by sk8enscars, Jul 18, 2010.

  1. mbofov

    mbofov Active Member

    Gotcha - the minomycin reduced inflammation in the absence of infection. But I agree as you said that using antibiotics to reduce inflammation is not a good idea.

    I was thinking that since these DD are so hard to diagnose and find out what's going on, it might be a good idea to give someone a course of doxycycline (which is effective against lyme and mycoplasma) just to see how they react. A herx reaction would indicate some sort of pathogen is involved, which would be very good information to have. For me, my complete non-reaction to the doxy indicated I don't have lyme or mycoplasma or other stealth infections, so the cause of my CFS is, well, I still don't know.

    Mary
  2. IanH

    IanH Active Member

    Yes that looks like a good idea. We do not have Lyme disease in NZ at all so I can't even begin to enquire whether such a trial was ever done. There are a few cases pop up in Australia. All tourists going to the US are warned about it.

    There seems to be a lot of confusion between the two diseases in the US. Correct me. . I thought Boreliosis was the advanced form of Lyme which can occur in some people who do not recover from the Lyme after treatment. Is that not so?
  3. mbofov

    mbofov Active Member

    I'm afraid I know very little about lyme. I have read that boreliosis is involved in lyme somehow but that's all I know. There are some people very knowledgable about lyme on this board so if you posted your question directly, they could probably answer it.

    Mikie on this board says that her CFS stemmed from a mycoplasma infection and that she was treated with long-term doxycycline, so same treatment as lyme, but different infection. ANd she herxed a lot on it.

    I didn't know you were in New Zealand! A world away from here (California) -

    Best wishes,

    Mary
  4. lesliesue

    lesliesue New Member

    B Burgdorferi is Lyme disease, I believe. I have had it for 25 years so you would think I'd be sure. ; ) but I also have that addled Lyme brain.

    My first thought when I read the first post was: Lyme disease. It is a cause of fibromyalgia and chronic fatigue syndrome. Many, many people feel better on antibiotics. I never did, but I am a complicated case.

    And as people have mentioned the tests are notoriously bad. I was tested with negative results a few times over the years. A bad, tricky disease.
  5. Nanie46

    Nanie46 Moderator

    It was month 9 of taking antibiotics when I started to notice less pain and stiffness.

    I had taken doxy for 3 months, then switched to other abx for summer, then switched back to doxy in the fall....that is when it started to help me.

    My sleep, fatigue and brain fog improved sooner due to bioidentical hormones.
  6. lesliesue

    lesliesue New Member

    It sounds like you are improving. That is fantastic!
  7. munch1958

    munch1958 Member

    I thought I had CFS/FM since childhood so I went to a Fibro and Fatigue Clinic in 2006. They do an infection panel as part of the new patient testing. I had many positive bands on my Western Blot test with Quest which almost never happens. So they sent my blood off to Igenex and it came back with many more markers for Lyme.

    I am one of the lucky ones because most people don't remember a rash or a tick bite. I've had 2 rashes and 3 tick bites that I know of but the nymph tick is the size of a poppy seed and an adult is the size of a sesame seed. Think about that every time you get an everything bagel. If it was in your back would you see the tick?

    Seven year later, I no longer have any chronic fatigue symptoms or fibromyalgia. I was treated with anti-virals, anti-fungals and antibiotics for 5 years. I also did 10 months of heparin.

    Today, I feel great other than a problem with my back. Because I was deficient in growth hormone since maybe second grade when my insomnia symptoms first began, I broke 6 vertebrae. My PM doc told me I do not look like someone with fibromyalgia or chronic fatigue. YIPEE! That was the best compliment she could have given me. But now I wonder what a person with CFS/FM looks like to her?
  8. words

    words New Member

    If anyone's interested, it's quite easy to just buy them online.... from Amazon or petfood websites directly. I was freaked out about doing so, but after a LOT of reserach, figured out I could get pharma-grade doxy far cheaper then any doc's office would charge me... even in the same mg. amounts.

    Strange how someone with CFS had to resort to a Survivalist website to learn this, but I digress...

    Doxy wa s a turning point for me- actually, the only one thus far, after over a year of being housebound. I did 2 pills a day- totaling 100. I'm now rotating another antibio soon.

    I've been bit by ticks more times than I can remember in several states in the U.S. starting from childhood on. They gave me the Elisa, of course saying negative. Toxo was equivocable or whatever the term was.

    My shrink clearly thinks I'm nuts for taking an antibio.... yeah, well, he had no explanation why the high fevers I ran daily and nightly suddenly vanished. And I had more energy.... less fog. Or, wait? Was that a side effect of giving up on "doctors" completely?

    Feel free to pm me if you need help with navigating the online thing. No, I don't work for some petfood store or something. I work to leave the house now a couple times a week & not crash for days on end after.

    Good luck, people. You know what you need & only you will be your own best advocate.
  9. Nanie46

    Nanie46 Moderator

    Thanks lesliesue!!


    Ian,

    Dr Burrascano, a Lyme disease expert says on page 3 of the following paper that he calls infections with Borrelia burgdorferi, "Lyme Borreliosis".

    I think he refers to any Lyme infection as that, whether it is acute or chronic, just because of the name of the bacteria that causes Lyme disease.


    http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf
  10. Nanie46

    Nanie46 Moderator

    My LLMD told me not to expect any improvement in the first 6 months because there is so much herxing.

    I did improve from the hormones in the first 6 months, but it was longer for the antibiotics to cause improvement.

    Right now I am starting one of Stephen Buhner's herbal recommendations, Japanese Knotweed. He says it is the best herb for neurological symptoms.