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Antibiotics got rid of malaise

Discussion in 'General ME/CFS Discussion' started by sue1234, Sep 4, 2018.

  1. sue1234

    sue1234

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    Last year, twice, I took antibiotics probably about 9 months apart(I had been many years previous with not taking any, and really not one to get sick(other than this chronic ME/CFS)). The first time, I had been having months of morning redness over one cheek that would last a few hours after getting up, and it was always warm to the touch. I never had fever with it, and it would go away by mid-morning. One morning my eyeball on that side kind of hurt to move. I don't usually have an illnesses, and not really a sinus person, but I thought maybe it was sinus going on without fever, and finally went to an urgent care. He didn't think it was an infection, but agreed to let me do antibiotics because it had been going on for so long. Within two days of starting the antibiotics, I felt pretty good! That constant malaise totally went away! At some point, the malaise came back. Fast forward to what appeared as a bladder infection. I say that, because I used telemedicine for that so no way of testing. I was prescribed an antibiotic, and sure enough, the malaise went away again. I never had a fever that would signal an infection. The malaise eventually comes back. What in the heck is going on in my body that an antibiotic makes me feel so much better?
     
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  2. S-VV

    S-VV

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    Either some bacterial infection like Lyme, or more likely, the antibiotics are temporarily correcting a gut dysbiosis.

    Sure, some people will tell you that its the anti-inflammatory effect of the abx, but I don't see it likely.

    What antibiotic was it?
     
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  3. knackers323

    knackers323 Senior Member

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    I have had similar effects multiple times from macrolide abx.
    Feel the positive effects within a day of starting and lose the benefit within a day of stopping so for me I feel it's likely due to immune modulating/anti inflammatory effects
     
  4. pattismith

    pattismith Senior Member

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    Would you explain which antibiotic you were prescribed, the dose and the duration?

    An infection can exist without fever.
    Some chronic infections can manisfest as "cold infections"...

    I got rid of my own vertebral pains with antibiotics...and the relief came as soon as the second day of treatment.

    The first course of ten days gave me a relief for ten days.
     
  5. sue1234

    sue1234

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    I think both times I was taking Bactrim. I don't remember the dose, but think I took it twice a day. I totally understand all the hoopla about taking antibiotics when not needed, and I agree with that, but now I wish I could just take an extended course and see if whatever is underlying would clear up for good.
     
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  6. ljimbo423

    ljimbo423 Senior Member

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    I agree with what @S-VV says in the post above. My bet would be gut dysbiosis was corrected enough to relive symptoms.

    There are 3 leading ME/CFS researchers that think it's dysbiosis that is causing many or most cases CFS. Ian Lipkin, Derya Unutmaz and Chris Armstrong all think it's dysbiosis that's primarily driving CFS.

    I have also reached the same answer and am getting great relief with a low carb diet and antibacterial herbs. The problem with antibiotics is the relief is often only temporary.

    A low carb. diet and months of antibiotic herbs, I think are necessary to keep the dysbiosis from continually returning and the symptoms with it.

    Long term management of gut dysbiosis will be needed by most people from the research I've done. SIBO and dysbiosis are often chronic conditions. Meaning they will continue to return without proper maintenance.
     
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  7. knackers323

    knackers323 Senior Member

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    @ljimbo423 hopefully they are correct that dysbiosis is the root cause for many but how do they explain the following

    Abx having that much effect in 24 hours?
    And then after a week or two of abx treatment the bacteria and symptoms can grow back that much within 24 hours?

    That doesn't sound right

    Would think the results should last longer like in the below link.

    Do they have an explination as to how a huge percentage of the population has a dysbiosis but only a very small one have CFS type illnesses?

    If dysbiosis is the root cause in many, how is CFS triggered by unrelated issues, other infections, car accidents, stress etc.

    How does it explain the mass outbreaks?

    The fact that people achieve remission through treatments that are not related to dysbiosis?

    I also get good results from some treatments involving the gut but the effects only takes me so far.

    Would think the dysbiosis theory should be pretty easily tested by a course of abx to wipe out all gut bacteria like in this link

    https://www.webmd.com/ibs/news/20110105/2-weeks-of-antibiotic-therapy-relieves-ibs

    2011 -- A two-week course of the antibiotic rifaximin (Xifaxan) helps to relieve the symptoms of irritable bowel syndrome(IBS), and the relief lasts up to 10 weeks after stopping the medication, according to new research.


    It's definitely an area worth looking at but there seems to be something missing.

    I've read that it's been found in other illnesses and infections that it can be the illness or infection itself that shapes the biome to a certain make up rather than the biomes state causing the illness.

    To the point where the same illnesses are creating the same biodome in multiple patients, like a recognisable fingerprint

    The fact treatment needs to be ongoing to prevent relapse shows some evidence that there is something forcing the biodome into a certain state.

    There are a many of story's of CFS patients having their gut bacteria wiped out and having a fecal transplant and achieving remission but the effects don't last.
    I'm not sure but I think this is not the case when using abx and fecal transplant for treating c.difficile.
    I think the results are more permanent

    So what is it that seems to be forcing the biome back into the unwanted state in CFS?

    Lots of questions remain that I hope they have answers to soon
     
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  8. sue1234

    sue1234

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    Interesting you mentioned about gut bacteria. I have had gut issues for probably 20 years. The severe fatigue/malaise hit me about 2-3 years ago. I have taken Xifaxan a couple of times a year for the last probably 5 years, and it helps with my horrible bloating. However, it doesn't affect my malaise. I do believe gut bacteria are super important! I just haven't noticed in me that it changed my energy.
     
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  9. S-VV

    S-VV

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    Indeed, we have to distinguish between small and large intestine bacteria. Small intestine bacteria have no purpose, shouldn't be there and produce toxic metabolites like H2S and NH4. They are treated with non systemic antibiotics like rifaximin, which by the time they reach the large intestine are mostly deactivated and don't produce any change in the microbiome.

    On the other hand, there is no way to get rid of bacteria in the large intestine, so it's best to have the least pathogenic microbiome possible.
     
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  10. S-VV

    S-VV

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    As to why antibiotics produce such a rapid change, as someone who has dealt with Lyme for a long time I can tell you that inhibition != Elimination.

    These bacterial populations are well established (biofilms), are in symbiotic relationships with other pathogenic bacterium, and are obviously superior to healthy bacteria in terms of dominance.

    Antibiotics *inhibit* further growth, and allow less pathogenic bacteria to establish themselves. But once the antibiotic is removed the inhibition is gone and the pathogenic strains quickly take over.
     
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  11. ljimbo423

    ljimbo423 Senior Member

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    I have been following functional medicine doctors for many years. They all agree that SIBO/dysbiosis is more often than not a chronic condition.

    People without CFS very often have relapses after treating SIBO/dysbiosis. It's extremely common. So the relapses back to dysbiosis are unrelated to CFS.

    It happens to most people with or without CFS. SIBO/dysbiosis is often a chronic condition in otherwise healthy people.
     
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  12. ljimbo423

    ljimbo423 Senior Member

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    Rifaximin only works in the small intestine. If you have dysbiosis/leaky gut in the large intestine causing malaise, Rifaximin would not affect that.

    The other antibiotics you took that helped relieve your malaise were systemic. So they killed off pathogenic bacteria in both the small intestine and the large intestine. I think that's probably why you had an improvement in symptoms.

    Dysbiosis and leaky gut, as I understand it, can be in the small intestine, the large intestine or both. If SIBO/dysbiosis is causing PEM and fatigue/malaise and SIBO/dysbiosis is often a chronic condition, which it is.

    That could go a long way to explaining why CFS is so difficult to put and keep, in remission.
     
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  13. knackers323

    knackers323 Senior Member

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    Is there a theory as to what causes it to relapse back?

    If the bacteria are all killed off and then replaced with a good biodome and patient follows the correct diet then in theory the healthy biodome should remain.
    What is the factor that keeps pushing it back into dysbiosis I wonder


    @S-VV you notice improvement to your Lyme symptoms within 24 hours of taking abx?
     
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  14. Dufresne

    Dufresne almost there...

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    What's stopping you?
     
  15. sue1234

    sue1234

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    I can't just go to any doctor I have at the moment and ask for antibiotics. I would hear a definite "No".
     
  16. ljimbo423

    ljimbo423 Senior Member

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    Dr. Mark pimentel is a leader in treating SIBO. He thinks the main reason SIBO is so often chronic is because of nerve damage in the small intestine from a prior intestinal infection. Which impairs the migrating motor complex and allows bacteria to overgrow.

    Another reason for chronic SIBO is said to be a weak ileocecal valve. The valve keeps bacteria in the colon from getting into the small intestine and overgrowing there.

    Yes, that does work in a significant number of people. This is a quote from a study done by Thomas Borody that got a 58% sustained, full recovery response in CFS patients over a 15-20 year follow up!

    LINK
     
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  17. knackers323

    knackers323 Senior Member

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    @ljimbo423 thanks.
    They are interesting theory's that I suppose are possible.
    If true it wouldn't leave much hope for cures though, but rather life long treatment.
    Which wouldn't be so bad if the diet wasn't so damned restrictive.

    I've heard about dr Barodys results previously.
    They seem to be impressive but if he's known about this for 20 years why has nothing more has come of it.

    From what I've heard anecdotally it seems more common that the effects wear off within a year and need to be continually redone.
    It is not an inexpensive procedure, unless one does it themself.

    I've been to his office three times over the last 20 years.
    The last time I seen one of his other doctors who was prepared to have me wipe out my gut flora and have the fecal transplant but at the same time told me there is no testing that is useful for gut bacteria.

    How then can they know what they are transplanting people with?

    His statement seems incorrect, unless he was referring to commercially available testing.

    Seemed like a bit of guesswork to me and there are stories of people becoming worse after the transplants.

    This was a couple of years ago that I last went to his office, maybe they seem more sure about what they are doing now.
    It would be good to hear if he is still getting the same great results as in the study
     
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  18. Dufresne

    Dufresne almost there...

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    https://www.alldaychemist.com/bactrim-ds-800mg-160mg.html

    At the moment they're out of stock, but I imagine they'll have it again soon. No prescription needed.
     

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