The power and pitfalls of omics part 2: epigenomics, transcriptomics and ME/CFS
Simon McGrath concludes his blog about the remarkable Prof George Davey Smith's smart ideas for understanding diseases, which may soon be applied to ME/CFS.
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Azithromycin in Chronic Fatigue Syndrome (CFS), an analysis of clinical data

Discussion in 'Latest ME/CFS Research' started by A.B., Sep 13, 2015.

  1. A.B.

    A.B. Senior Member

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    An older open label study reported a response rate of 59% to azithromycin. Patients did not fully recover but the improvement was substantial, and difficult to explain via placebo effect alone according to the authors.

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1562448/
     
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  2. SOC

    SOC

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    Wow, besides the information about the effectiveness of azithromycin, which could do a lot for our quality of life, this paper actually pays attention to responsible research such as clearly defining your research cohort in the abstract so readers know the applicability of the research, and acknowledging the limitations of your results. :thumbsup: Psychoquacks could learn something from this... if they were willing to learn about doing responsible research.

    Isn't this surprising coming out of a CFS research center in the Netherlands? o_O Or am I wrong about the state of CFS research and treatment in the Netherlands?
     
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  3. A.B.

    A.B. Senior Member

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    I'm more surprised that this hasn't been researched further. A proper clinical trial is justified. These results don't seem to be far behind the Rituximab open label study and azithromycin is much cheaper.
     
    Last edited: Sep 13, 2015
  4. SOC

    SOC

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    Nothing surprises me regarding the inadequacy of research related to ME. :rolleyes:

    I agree, though, that this warrants prompt further research. The research and the treatment should be relatively cheap and easy. Maybe we need to offer to crowdfund a study for some reputable ME researcher. :p
     
  5. Denise

    Denise Senior Member

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    Vermuelen has done some interesting work.
    These are links to a few things:
    http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(01)05419-8/abstract

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2964609/

    http://www.translational-medicine.com/content/12/1/20


    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1621077/
     
  6. SOC

    SOC

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  7. Hutan

    Hutan Senior Member

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    Has anyone on the forum used azithromycin? and if so, did it help?
     
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  8. Daffodil

    Daffodil Senior Member

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    a lot of people have used it as part of a lyme disease treatment protocol. i have used it. it may have helped a little but i change medication pretty often so i cannot be sure. the only thing that helped A LOT was IV Rocephin...but that is a very powerful, wide spectrum antibiotic that one cannot take indefinitely.
     
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  9. Valentijn

    Valentijn WE ARE KINA

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    The academically dishonest Dutch CBT group comes from the Nijmegen Fatigue Center at Radboud University. There's a legit researcher in Amsterdam, maybe elsewhere too.
     
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  10. Valentijn

    Valentijn WE ARE KINA

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    Yes, it seemed to. It's hard to tell though while I'm still getting treatment, since the antibiotics wipe me out while I'm on them.
     
  11. Marco

    Marco Grrrrrrr!

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    This is a very curious study. and I'm not to keen on this sort of restrospective data mining. I also can't work out what their rationale was for prescribing azithromycin in the first place although why they think it may be helping is possibly prescient (and nothing to do with its antiobiotic activity) :

    Interestingly the immune modulating effects of azithromycin appear to attenuate TLR4 signalling which is the pathway by which many peripheral and psychological stressors activate microglia :

    Azithromycin distinctively modulates classical activation of human monocytes in vitro

    http://onlinelibrary.wiley.com/doi/10.1111/j.1476-5381.2011.01576.x/pdf

    The immune modulating effects of various antibiotics; including their effects on the brain are intriguing :

    Immunomodulatory Properties of Antibiotics

    http://www.medicinabiomolecular.com.br/biblioteca/pdfs/Biomolecular/mb-0467.pdf
     
  12. medfeb

    medfeb Senior Member

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    My son was on a combination of Azithromycin and Doxycycline because of a positive Lyme. Very positive response and very quickly. He was able to walk a few miles at a time and he read a number of books, planned his wedding, went to coffee shops, etc. But it only lasted a few months. He was never able to regain the functional improvement, in spite of later azithro, rocephin and some other lyme treatments over almost a year.
     
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  13. drob31

    drob31 Senior Member

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    This kind of sounds like the David Berg theory. You experience initial improvements, then hypercoagulation increases, trapping more lyme and other pathogens, and they continue to cause hypercoguability which prevents you from reaching the infection. He advocates using heparin to disolve fibrin and then ABX.
     
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  14. Valentijn

    Valentijn WE ARE KINA

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    How long was he on the initial course?
     
  15. Sidereal

    Sidereal Senior Member

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    I haven't taken it in years but my mother who has "mild" ME took a short course of it last year and it significantly worsened her pre-existing IBS-D and she had extra fatigue & muscle pain for several months afterwards.
     
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  16. Overstressed

    Overstressed Senior Member

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    Everytime I take Azithromycin I feel much better. Currently I'm taking Minocycline because I had an outbreak of itching scalp with a lot of lumps. I was walking in the forest and don't know if that was the cause of it. The day after, I started having these lumps and swollen lymphs in my neck.

    As for Minocycline, it is remarkable how flat my stomach now is, and how well my food is digested. As a side note: there are scientific reports that say that Minocycline helps with HIV infection. I don't know the details, but it seems to work on the latent infected cells, preventing them to reactivate, and replicate.

    Note, I really don't know what illness I have...
     
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  17. medfeb

    medfeb Senior Member

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    I believe he was on the initial course for a few months. It was when he went off that he started to decline. But in spite of going back on the same regimen fairly quickly, he never recovered to that previous level of functioning. No way to know whether he would have relapsed even if he had stayed on it or not. I've heard anecdotal comments from other patients that they had the same experience of initial improvement followed by relapse.
     
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  18. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    What dose and frequency do most use of azithromycin ?

    I have read from 1 to 2 days a week to daily. With doses between 250 to 1000mg.

    I know it has a long half life of approx 3 days. I just wonder if 1000mg once a week would be effective for chronic infections, probably with doxycycline or bactrim .
     
  19. Helen

    Helen Senior Member

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    It is much longer. I was told that the first pill will stay for 14 days in the body, so surely it accumulates. I guess you can find facts expressed better than this.
     
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  20. soxfan

    soxfan Senior Member

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    I was on it as well....many times over the past nine years. I don't believe it really had any impact on how I felt. It did make me much more fatigued so I usually took my dose at night.

    At one point I was taking 500 mg daily and I have also taken 250mg daily due to a long half life. The only thing that ever helped me was IV Rocephin which I was on for six months. I would have continued on it since I was having a great response but suffered gallbladder issues. Within months after discontinuing it I started to go backwards.

    I tried IV again a year later and had no improvement at all...

    I also have no idea what is truly wrong with me either. The doctors can't seem to figure it out.
     
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