Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Unexpected antibiotic reaction

Discussion in 'General ME/CFS Discussion' started by vision blue, Feb 4, 2017.

  1. vision blue

    vision blue

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    I reluctantly took antibiotic for an acute sinusitis with a high fever; first time in more than 10 years. Unexpectedly, it took away - while i was on it - some of my most disturbing symptoms. I became no longer "over stimulated" , and could sleep thru the night. Though it also made my thinking foggy. Now i'm doing a fast taper and seem to be getting withdrawal symptoms- loads of muscle aches and the overstimulation stuff i think starting to come back, though not fully yet. Was not expecting this.
     
  2. adreno

    adreno PR activist

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    What was the antibiotic?
     
  3. Learner1

    Learner1 Professional Patient

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    Could you have some other hidden infection that the antibiotics might have been attacking?

    What antibiotic was it?
     
  4. vision blue

    vision blue

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    Erythromycin.

    I"ve wondered that - could the antibiotic have been working on some other hidden infection? that would be pretty cool. Will see how long this effect lasts- i think my symptoms might be coming back too soon for that- but we'll see.

    have also wondered if somehow it suppressed my immune system from overactivity. maybe my immune system thought it could go on holiday since it got a temp to cover its work for a while.

    its hard to get good info on erythromycin since its so old and no one thinks about it anymore, but did see that it can excacerbate mystastenia gravis symptoms. while I do not have MG (though do have muscle problems), the fact it can do that is interesting. is it possible it downregulated a bunch of neural signals? that might explain the fuzzy thinking as well.

    while on the, i'd say my legs "felt like jelly" but it did not stop me from walking some; now as am tapering, perhaps getting muscle aches is somehow the opposite.
     
  5. adreno

    adreno PR activist

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    Erythromycin is a NMDA receptor antagonist. It reduces glutamate transmission. This is likely why you felt less stimulated on it. Another NMDA antagonist might give you the same benefits.
     
  6. vision blue

    vision blue

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    ooooh thats wonderful info. thank you so much . Do you have a reference. Really want to read more about it. have been suspecting the whole glutimate and nmda receptor issues as involved anyway, so this fits well.

    Do you know anything about antibody testing- that is, is there any autoantibody that would be useful to test if one suspects over stimulation of the nmda receptor? (i would think nmda autoantibodies would give the opposite problem, but perhaps it starts with overstimulation and eventually you get those antibodies).
     
  7. vision blue

    vision blue

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    p.s i nyour opinion, what's the absolute best place to go to read about causes of overstimulation of nmda receptor? thanks.
     
  8. adreno

    adreno PR activist

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    Here, for example:
    Macrolide antibiotics protect neurons in culture against the N-methyl-D-aspartate (NMDA) receptor-mediated toxicity of glutamate
    Antibodies can be both blocking or activating receptors. But there are many reasons for excitotoxicity. Infections also stimulate glutamate release, for example.
     
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  9. MEMum

    MEMum Senior Member

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    My daughter had a really good response to Azithromycin and then Clarithromycin, prescribed for raised ASO (antistreptolysin O) titres. Her cognition and stamina improved significantly for about 3-4 months, enough to restart studying and sit some A-level modules. She had also had a similar response previously to intramuscular Benzathine Benzyl Penicillin.
    Her Maths tutor commented that it was like teaching a different person, when she was not on an effective antibody regime. (She was not really up to following the Maths A level work at these times, but did try a couple of shorter sessions.)

    Sadly the Ben Pen injections made no difference at the end of last year. This was 4 yrs after the first set.

    She also has antibodies to the Pyruvate Kinase receptors of the Basal Ganglia. When this result came back they recommended testing for NMDA antibodies - but these were negative.
     
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  10. temple88

    temple88

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  11. nandixon

    nandixon Senior Member

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  12. temple88

    temple88

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    Thanks. I added it there too with a caveat that it had likely already been posted. Incredibly interesting lines of thought!
     
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  13. vision blue

    vision blue

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    Hi. Thanks for continued input. I was about to ask if anyone had other relevent studies they could find; i will look at the ones above on mTor. I went to the one on nmda; its good find, but likely the macrolide antibiotics are not exactly an nmda antagonist; rather, they seem to have found its protective at the nmda receptor against glutimate toxicity. but so far have only read the abstract. Anyway, a good find. have not been able to find similar articles; if anything, a couple of things that suggest the reverse- e.g. there was a report that macrolides inhibit the neuro protective effects of some immunosupressents. Will keep looking.

    for memum: does your daughter have PANDA? i think i came across that all when looking for infectious and AI causes of increased dopamine in brain and saw that those antibodies your daughter has, presumably from molecular mimicry to strep infection, can cause increased dopamine levels. In your daughters case, the antibiotic might just be beating back the strep (or body proteins that cross react with strep) which should help.

    was looking that erythromycin, like many macrolides, also has anti inflammatory and is an immuo modulator. it apparently decreases il-8 and possible tnf alpha.

    i can now cofirm that off the antibiotic, my symtoms are coming rushing back: awakeings repeatedly with vertigo and strange head sensations, sleeplesness, pounding heart, feeling like i've drank 7 cups of coffee, headaches, hot flashes, night sweats, overstimulation.

    but not sure i can live on the stuff. it did impair thinking, I already have elevated liver enzymes, and that stuff metabolized through liver, and the same t cell supression that may be beneficial in some ways may make my recurrent herpes return (some macrolides are apparently used specifically for immunosupression, particularly after organ transplants and they do mention risk of returning herpes viruses). This morning, i woke up with a burning rash on my chest. took a couple of pics of it. I do get dermographia anyway, so hard to know what to make of red blotches. but this burns not ithces and is not raised, so who knows what i might have st in motion from the antibiotic. I will have to await the next chapter...
     
  14. vision blue

    vision blue

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    update: i just went to the mtor study. ok, i see, so that's now the proposed mechanism for how some macrolides supress the T cells - by inhibiting mTor. SEems like anyone who thinks their disease might be helped by t cell surpress might really benefit from macrolides, if they agree with the person. They do agree with me- one of the few drug classes that do. So now only if i can keep my herpes virus in check, this might be a good approach for me ( i should add, one site of eruption is my chest, so its possible burning now on chest is a prodrome). I also have sjogrens, and t cell supression has fallen out of favor because of the risk in sjogrens of non-hodgkins lymphoma. and of course b cell inhibition has become all the rage for everything from soup to nuts. but i would risk the non hodgkins lymphoma, as i do not really have any other predictors for it (my c3 and c4 are good and i do not have RF)
     
  15. vision blue

    vision blue

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    I think this is pretty cool

    https://www.hindawi.com/journals/mi/2012/649570/

    for those also dealing with the possiblity of viruses.
    don't tell the drug companies on the usefulness of macrolides or the cost of my erythromycin will jump from 35 dollars for a 10 day supply to 350 dollars.
     
  16. MEMum

    MEMum Senior Member

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    Hi @vision blue, no my daughter did not have PANDAS - no motor tics or other movement problems or OCD etc.
    It only seems to affect her cognitive function/memory.
     

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