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. sk8enscars

    sk8enscars New Member

    If I get antibiotics for an infection I always notice that after a few days of taking it and until the end of it, I always feel great... like I don't have fibro. Is there anything to this?
  2. kat211

    kat211 New Member

    I have been feeling pretty darn good the last couple of days and I thought it was the change in meds to cymbalta, after the crazy wore off, but I have also been on heavy duty antibiotics. Hmm, I guess time will tell.
  3. rocky76

    rocky76 Member

    Have you ever been checked for chronic lyme disease...
  4. sk8enscars

    sk8enscars New Member

    Lyme was included as part of a blood test from 4 years ago and it just says "Lyme Disease Evaluation - Negative"
  5. Nanie46

    Nanie46 Moderator

    Hi,

    It is important for you to know that Lyme testing is very unreliable.

    99% of Dr's erroneously rule out lyme based just on a patient's negative lab test.

    There are many reasons why a Lyme test could be negative even though you have Lyme...


    http://www.canlyme.com/seronegreasons.html


    Just ask many lyme patients on lymenet.org.....many of us have only had negative lab tests.

    It is also possible that you only had an ELISA which is almost always negative....a really useless test.

    If you feel better on antibiotics, it is likely that you have a bacterial infection.

    Lyme is a bacterial infection.....Borrelia burgdorferi.....a very complex spirochete.

    Please read this booklet...it contains a great symptom list.....


    http://www.lymepa.org/Basics2007v1.2Rev.pdf



    Also, this paper by a lyme expert contains a great symptom list on p 9-11 and coinfection symptom info pages 22-27....


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


    Many lyme patients first had diagnoses of fibromyalgia, Chronic fatigue syndrome, MS, etc, before discovering that tthe actual CAUSE of their symptoms was this bacteria.

  6. majestuoso00

    majestuoso00 New Member

    I don't know, but azithromycin totally cures my severe chronic fatigue syndrome while I'm on it . After it wears off... day 8 or 9 after a 5 day anti-biotic, I feel horrible again. LMK if you find a doc that will give them to you long term~ I am like a 5 year old at Disneyland for 8 days, then back to being like a bedridden 100 year old woman. I'm sooo sick and tired of being sick and tired!
  7. greatgran

    greatgran Member

    Not sure why but I too have the same experience.. After day three on the antibiotics I feel almost normal.. I don't like taking them but they actually help my anxiety. After the antibiotics stop then in a couple days the same ole misery.. I am checking into lyme.

    Its so discouraging..
    gg
  8. greatgran

    greatgran Member

    I mention this to two different doctors and both said it was because of the decrease in inflammation.. I still think we have some type of infection . I am checking into lyme.

    gg
  9. Mikie

    Mikie Moderator

    We are prone to chronic infections which lie beneath the immune system's radar system. Lyme and mycoplasmas are the usual suspects. Long-term treatment with specific ABX are the treatments. Some have used transfer factors as well. Once a mycoplasma bacteria has gone chronic and stealth, it can take a PCR DNA test to identify it. Even then, these tests can be unreliable. The easiest way to trreat is to take the ABX and eventually, pulse on and off of them until one can stay off of them. It took 2 1/2 years to control my mycoplasma infection which, BTW, was what triggered my CFIDS full blown in 1990. There is a Lyme board here and they may have some info regarding treating Lyme.

    We can also have chronic stealth viral infections, often in the Herpes Family. I had to treat that as well and was on Acyclovir for 1 1/2 years, pulsing off and on. I still keep Doxycycline and Acyclovir on hand in case I get run down and these infections rear their ugly heads.

    Chronic pathogens can cause excess fibrin growth in the blood to produce a low-oxygen environment for the to thrive in. They hide out in the bloodstream behind these clumps of fibrin and platelets. One may have to treat this type of hypercoagulation. I used Heparin but it's not available to individuals now. The Lovenox is extremely expensive. I've found that Nattokinase with vitamin E works as well as, if not better, than the Heparin did. It is sold here. Hemex Labs has a panel of tests for this but again, if the blood isn't handled properly, the results cannot be trusted. A very low sed rate is indicitive of fibrin growth in my own case but if a person has a lot of inflammation, that is not a reliable way to check.

    If you can get your doc to agree, you may want to try long-term use of ABX and go by how you feel. There is a lot of info on the web and my doc was impressed and persuaded by the high-quality medical research I brought to him. Good luck.

    Love, Mikie
  10. Yucca13

    Yucca13 Member

    definitely makes me feel better also. I often have what I think is a sinus infection and ask for antibiotics. The only one that really works well (and quickly) is the Z-Pak. I feel so much better the whole time that I am on it. I understand that it isn't a good thing to stay on antibiotics much of the time, but unfortunately they are the only thing that seems to make a dramatic difference when I get into the pit of having headaches, sinus issues and severe fatigue every day.
  11. PITATOO

    PITATOO Member

    Could it be you have a chronic low grade infection?

    I had a mycoplasma that I went on a 6 month course of anti-biotics. It helped at the time. Lyme?

    I also had a root canal that was infected for a couple of years even after the "root canal" was performed. They missed a "canal"? Something like that. Would clear up and feel better with FMS/CFIDS for a while then act up again. I think FMS/CFIDS is caused by many things and so are the flare ups.

    Just some thoughts.
  12. roge

    roge Member

    some great posts. i am one who believes most with fm and me/cfs likely have a dysfunctional immune system (mainly weak) and many of us have chronic opportunistic infections and why abx would make us feel better. problem is, when come off them, we feel bad again because of the likely immune dysfunction. like mikie said, best to be on abx for a while and then cycle/pulse them as opposed to coming off them completely and also work on trying to modulate the immune system (the latter is hard as we are pretty much on our own in terms of trying and using various supplements). could be why low dose LDN is helping some with fm, as aside from increasing endorphins and thus reducing pain, it also modulates the immune system
    [This Message was Edited on 11/18/2010]
  13. Mikie

    Mikie Moderator

    There used to be a great article in the library here by Dr. Cheney on how our immune systems work and how PWC have disfunctional immune systems. Like many with CFIDS, I very seldom get "colds or the flu." If I start to get sick, my immune system puts the smackdown on it and it is very mild and doesn't last.

    However, my immune system is very sluggish when it comes to the chronic infections which I lived with for 11 years before we started treating them. That was one of the articles I showed to my doc.

    Unfortunately, the overactive part of my immune system may be causing Sjogren's Syndrome, an autoimmune illness. That is always the danger with us. Dr. Nicolson wrote about that when he described chronic mycoplasma infections and treating them. He believes that the sooner one gets the infections under control and gets off ABX, the better.

    Most of our chronic infections replicate inside our cells and then rupture the cells as the new bacteria and/or viruses enter the blood stream. These new pathogens can carry parts of the ruptured cell with them. If our bodies recognize the pathogen as foreign, they may also identify our own DNA as foreign and, voila, an autoimmune reaction can take place. That may be where our autoimmune illnesses originate.

    Love, Mikie
  14. luigi21

    luigi21 Member

    Theres something to what you say Broadcasting, since fibro's symptoms are dysfunctions in the autonomic nervous system, endocrine, and more importantly the central nervous system ie the lymbic system, our brain can work as a 'gateway mechanism, so while something else is happening to the body ie distraction it can temporarily relieve other symptoms in the body.
  15. oasisflyer

    oasisflyer New Member

    I know this is a very old post, but I have to try to get in touch with some of you! What you describe here, Yucca13, is EXACTLY what I go through. There were a few other posts that sound just like me as well.

    I'm hoping to get in touch with any of you to see how you are making out today and if anyone has had any success?

    I'm awaiting Lyme test results, meanwhile I can barely get out of bed and my headaches, sinus issues and severe fatigue are unbearable. Called another doc today to beg for a Z-pack refill, as that's the ONLY time I can function and feel well.

    I know this is probably not going to get any replies, as most of you haven't been on this site in a very long time, but I'm desperate and wanted to try anyway. Thanks!!
  16. ljimbo42

    ljimbo42 Member

    Interestingly enough small intestine bacterial overgrowth (sibo) is caused largely from taking antibiotics. A high carb diet and any kind of sugar are their best source of fuel.

    Having said that the fastest cure is antibiotics, I think that's why so many people feel better taking antibiotics. A low carb low sugar diet, very large doses of probiotics and treating leaky gut are also necessary.

    Although sibo can also be treated with antibiotic herbs, it takes longer to treat. A lot of people think they have a candida overgrowth when it is really sibo. Which is a bacterial overgrowth not an overgrowth of yeast. When antibiotics are taken they wipe out all kinds of bacteria that live in the digestive tract, the good and the bad.

    The problem is that bad bacteria are more antibiotic resistant than the good. So the good get killed off first allowing the bad bacteria to overgrow. That causes inflammation and leaky gut.

    The bad bacteria also give off lipopolysaccharides (LPS) that are very toxic to the brain and cause a strong immune reaction that can lead to allergies, flu-like symptoms etc.

    The bad bacteria also create hydrogen sulfide which is also very toxic. Please look into this if you can, I think treating sibo, and leaky gut are a big part of the solution.

    I believe the lipopolysaccharides, etc. are a huge source of toxins for many of us. Treating these things has helped me greatly in just a few months. All the best... jim
  17. Nanie46

    Nanie46 Moderator

    Hi,

    I just wanted to mention that Lyme tests are very unreliable. I have Lyme (originally misdiagnosed with Fibromyalgia 25 years ago).

    Through my own research 4+ years ago, I suspected I really had lyme. My lyme tests were negative, so local Dr's discounted it.

    Many people with Lyme only ever had negative tests for many reasons.

    Because testing is unreliable, many of those people never get a correct diagnosis and their Dr says it's not lyme when it is.

    I did find clues when I had a western blot IgG and IgM through Igenex lab in CA. I knew from reading western blot info on page 7 of Dr B's paper (last link below) that I had lyme specific bands show up on my western blot.

    Western blots done by other regular labs like Labcorp and Quest do not even test for all of these bands. They leave alot of Lyme specific bands out.

    I also had many symptoms on the symptom check list on pages 9-11 of that same paper.

    I went to see a Lyme literate MD and he gave me a thorough evaluation and confirmed my suspicion of Lyme.

    I was treated by a Lyme literate MD with long term antibiotics, bioidentical hormones and much more, and I am much better than I was 4 years ago.

    There are message boards specific to Lyme disease at lymenet.org....click on flash discussion....sign up for free...click on Medical Questions Board and read posts and post your questions. There are also lyme boards there for General Support, Seeking a Doctor, etc.

    Please read this important info about Lyme Disease:


    http://www.prohealth.com/library/showArticle.cfm?libid=16301&B1=EG060111


    http://www.lymepa.org/Basics2007v1.2Rev.pdf


    http://www.ilads.org/lyme_disease/about_lyme.html


    http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf
    [This Message was Edited on 01/30/2013]
  18. IanH

    IanH Active Member

    Most antibiotics have significant anti-inflammatory effect. So even when they given for a specific infection they will have a general systemic anti-inflammatory effect. It may be also that digestive tract inflammation is being reduced as well. Digestive tract inflammation/infection is a major contributor to immune system imbalance which leads to rises in pain and fatigue.

    majestuoso00 mentioned azithromycin. All the tetracyclines have strong anti-inflammatory effect, particularly minomycin.

    This has been reported many times by people with FM and CFS. In fact we had three people with FM trialled on minomycin for a year (minomycin is the safest for long term use) and all three reported significant improvement - BUT - after three to five months the effect began to "wear off" and the benefit did not return within the year.
    So not a long term treatment.
    [This Message was Edited on 01/30/2013]
  19. mbofov

    mbofov Active Member

    Several years ago my doctor had me take doxycycline for about 60 days just to see what would happen, and nothing did. I did not feel better or worse, no effect. I think if one feels better on ABX, it would be an indication of some type of infection, lyme, mycoplasma, etc.

    I don't think giving ABX just to reduce inflammation is a good idea. There are much better ways to do it. We just shouldn't take ABX unless we really need them. I believe the people who feel better while taking them have some sort of infection.

    c-reactive protein will test for levels of inflammation. I know that diet plays a huge role in inflammation. I've eaten very little sugar or white flour or wheat for a many years and my c-reative protein number was very low.

    Jam's new product, anatabloc, sounds like it's really good at reducing inflammation so if that was one's goal, and not dealing with an infection, then the anatabloc would be much better to reduce inflammation than ABX.

    I have CFS and don't feel better on ABX. Someone else does. So I don't think we have the same illness, but it's all called CFS. We really need meanintful and accurate diagnostic testing. As it is, it's a hodge podge of symptoms all thrown in the same basket.

    Mary
  20. IanH

    IanH Active Member

    Mary, in the three cases I mentioned there was no infection, (certainly no Lyme) at least no infection indicated by elevated white cell counts and elevated levels of CRP. Yet they did respond well to the minomycin. Of course CRP is not normally elevated in ME/CFS even when the patient has shown to have HHV elevations. I don't know much about Lyme but I do know that late stage boreliosis does not always shown elevated CRP.

    The mechanism of antibiotics reducing inflammatory state is probably mediated by IL-6 which is a multi-faceted cytokine and is elevated in infection and inflammation.
    However I agree that using antibiotics to reduce inflammation is a bad idea.
    [This Message was Edited on 01/31/2013]