Discussion in 'Fibromyalgia Main Forum' started by simonedb, Mar 17, 2010.

  1. simonedb

    simonedb Member

    has anyone taken this for cfs, experiences? someone had rec'd this on the board here last year and said they orderd it on line and had been safe so I took a chance and got some but was afraid to try it, from India, put it in the drawer. In a bad flare up this week after flying, couldnt figure out if irritated tricky neck/chiari from bad landing and air pressure in cabin or if got a bug, but been hurting atlas headache and spine and shoulders hurt and bad mood, only thing takes edge off is benadryl oddly but makes bad mood, so tonight got idea to try doxy, was scared in case not good factory so broke it in half (like that would save me if so) so 50 mg, and after 45 mins I think I feel some relief, just subtle but like an edge off, sort of like when I took antibiotic prophalactyically for dentist, but I got scared 30 min after taking it and took a afew charcoals so that might cancel some of the good out, if it seems more good than bad in a.m. will take some more for awhile.
    any experiences lately?
    I am tempted to call my doc and ask for some as experiment as havent really done a trial of abx for cfs flare.
  2. TigerLilea

    TigerLilea Active Member

    I'm guessing it would be the placebo effect if you felt relief in only 45 minutes. Antibiotics are only good for bacterial infections; they don't work for viruses and pain. They should be respected and only taken when absolutely necessary.
    [This Message was Edited on 03/18/2010]
  3. heapsreal

    heapsreal New Member

    I used doxycyline a few years ago and had similar effect to yourself, decrease in aches and pains although i did have a die off reaction where i just felt crappy, this was occurring after 3 days, i got to the stage where i would just have a day off every third day to avoid headache/brain fog symptoms. It did overall help my cfs symptoms especially aches and pains but was not long last, i did take this for a few months. There are different protocols of using this med like every second or third day etc to help avoid die off reactions. Also doxycyline and minocycline do have anti-inflammatory affect and are sometimes used in rhuematoid arthritis for this affect.

    good luck
  4. simonedb

    simonedb Member

    thanks for info you guys
    yea I know about warnings against abx unless really nec., heck back in the day when I was healthy I was always ragging agaisnt things like that the med establishment used too much in the 60s and 70s
    it shows my level of desperation to try them now, plus some cfs folks have found relief on abx at times so wth
    I have high quality probiotics if I continue this including mutaflor, seagest, sboulardi

    but I do often feel things quickly from many meds even on small doses that others don't, I think what I was feeling was alittle lightheaded and that felt relaxing cus my spine muscles are clenched right now, later my gut hurt, today though I seem pretty fine so thankfully it wasn't poison so will try it again
    but I could get some "die off" too, when I take artesunate, even a crumb of a dose or one drop of blackwalnut/wormwood tincture, I can have days after of increased pain, very strange, wasnt expecting it so dont think it was placebo.

    I will consider the echiniacea, but was wanting the big guns for the big hurt right now, but I sure don't want my hair to come out, its one thing thats still good with my body :) Jam, did yr hair grow back?

    i was thinking of pulsing if I do this due to my sensitivities to chems
    and I made an appt with doc but can't get in for couple weeks and hate going to er, what a pain unless you think yr dying

    I forget,if I test for infections later, like lymes cpn etc will taking abx mess up potential results, I would like to try to dx before I treat ideally, just so know what dealing with
  5. heapsreal

    heapsreal New Member

    would be good to take probiotics like you already are and every few months take a break and do a course of antifungals like diflucan or nizoral. Doxy and other tetracyclines are used alot long term for chronic infection as well as acne. Thed only side effct i had was if i didnt put sun protection on i got burnt easily if out in the sun.
  6. ulala

    ulala New Member

    to have anti inflammatory properties as well as antibacterial properties. 100 mgs. is a very low dose. Some take 100 mgs. 2x/day and some take up to 400 mgs. per day. Supposedly you have to take 400 mgs. to get it to cross the blood brain barrier. There's a lot of info about doxy on

    It does make your skin much more sensitive to sun.
  7. simonedb

    simonedb Member

    I had heard it was powerful antiinflammatory too so I thought even if it was spinal problem maybe it would help that pain if not infection/bacteria

    heapsreal, did you stop doing it? if so ,why? you feel like it ran its course and helped and now you dont need it, somewhat better? or back to square one, i mean is it worth doing in the long run?
  8. spacee

    spacee Member

    I have been doing the Stratton/Wheeler (or it may be the Wheeler/Stratton) Protocol.

    It calls for 100mg of doxy twice a day for about 45 days (You can tell it doesn't help my brain!)
    followed by a 7-10 day course of metronidazole 500mg twice a day.

    You also take 1000mg of Vit C and NAC (but I don't take the NAC cause it makes me feel worse)

    I take a probiotic at suppertime which is more than 2 hours away from when I take the doxy.

    You go through 4 rounds of the doxy/metronidazole. I am in my 3rd round.

    It was Celticladdie who used to post here regularly who posted about it here.

    I can't exactly say if it has helped. I have stopped taking the Transfer Factors that helped me so much and haven't gone downhill.

    Just posting this for you to know my experience. Not to say that I think it helps or doesn't. Cheney says we are all different and I think most of us here know that.

    BTW. Doxy kills mycoplasms which I think some of us have. Many years ago, my children's pediatrican noted that children with what he thought was CFS felt better on doxy but it didn't
    last after they got off.

    And, one last thing. I had mentioned on another post that the NAC made me feel worse but that it is suggest by Dr. Judy Mikovits that it could help with XMRV. And maybe I should take it anyway. Someone said they didn't think I I followed that advice. Who likes to feel worse, right?

    Good luck to all

  9. heapsreal

    heapsreal New Member

    hi simonedb, yeah it just ran it course and stopped working or just stopped noticing any improvement. Have done a few courses since the first one, each one has helped abit.

    I actually seem to get abit of improvement with antifungals too, maybee with cfs just have alot of opportunistic infections. Last year i did a course of flagyl which is good for gut type infections followed by an antifungal and had a good level of improvement but also on antiviral famvir at the time and now on valtrex as its cheaper, but i think it has all helped, but mainly antivirals.

    Personally Im starting to think its just our immune systems are had it and we are prone to infections and viral reactivations, treating one or two of these can help lower the stress on our immune systems so it can handle other infections better.

  10. heapsreal

    heapsreal New Member

    how have u been going, are u getting good results with the abx protocol. Were diagnosed with mycoplasma or just on a hunch and theraputic trial??

  11. Bluebottle

    Bluebottle New Member

    if doxy helps you then it may be because you have lyme disease - doxy sends the bacteria into dormant cystic mode
  12. spacee

    spacee Member

    I can tell no difference in how I feel BUT it did bring down my ANA.
    ANA was pretty high 1280 and came down to 320. Shocked the
    heck out of my doc.

    I have been tested for Lyme by Ignex but wasn't positive. I think
    I do have some sort of mycoplasms. Took Target Transfer #9
    for that kind of pathogen and it helped a lot.


    In addition, I found it by googling Stratton Vanderbuilt protocol.
    It is much more involved that what I did. It is for Cpn a mycoplasm.
    [This Message was Edited on 07/06/2010]
  13. Nanie46

    Nanie46 Moderator


    I was also tested by Igenex and was negative, but I have Lyme.

    It is very important to know that Lyme should never be ruled out just because of a negative test.

    Many people with lyme have only had negative tests.

    The testing is very unreliable.

    I did, however, have a + and IND result on some Lyme specific bands on my Igenex western blot.

    The test was officially read as negative, but I have lyme.

    I started improving on doxy in month 9 of my lyme treatment...along with plaquenil.

    Many people will remain undiagnosed and suffer forever because Dr's tell them they don't have lyme based on a negative test, which is very wrong.
  14. rocky76

    rocky76 Member
  15. spacee

    spacee Member

    FYI...and we are all different. I have felt better after stopping the abx. Perhaps I was in
    a mild herx state.

    I really do not think I have lyme. I herxed on the Marshall Protocol which addresses
    mycoplasms. But probably wont know for sure til I donate my body to medical science.

    We have no LLMD's here so, I work with what I have.

    I think, for me, it would be good to do a 4 month course of abx (stratton vanderbuilt) once a year. They also want you to take 5mg of prednisone but I can't take that. Well, I took one
    and felt if I took another I would die.

    Good luck, Glen!