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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Chlamydia and the Microbiome

Discussion in 'Other Health News and Research' started by msf, Jun 21, 2016.

  1. msf

    msf Senior Member

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    http://www.ncbi.nlm.nih.gov/pubmed/27320172

    Obviously this isn´t relevant in every regard to all ME patients, but I wonder if a similar process could be at work in some of us, i.e. the already abnormal microbiome predisposes us to certain infections, which then perhaps mess up the microbiome further.
     
    Last edited: Jun 21, 2016
    Clerner, Justin30 and rosie26 like this.
  2. rosie26

    rosie26 Senior Member

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    I was never the same after a chlamydia infection when I was 20. Tried to find answers, but no one knew anything. When I fell very sick with severe ME I questioned whether it has something to do with ME and making me very ill years after the fact.

    I only found out just over a year ago the connection between chlamydia and reactive arthritis - no one had ever mentioned that to me, all these years. The strange thing is though, I never had painful swollen joints of reactive arthritis that I can remember. I only remember 2 occasions where I woke up 2 mornings in a row with a painful right knee which was excruciating to bend straight, but I never experienced it again.

    The main symptoms that I experienced after chlamydia were fibromyalgia pressure pain and changes in the microbiota that have been permanent. I have had so many tests over the years to make sure the chlamydia had not come back. Each time I have been clear of it.

    I do wonder if there is anyone else here who has had the same experience. Or maybe I have 2 illnesses, reactive arthritis and ME? I really don't know.
     
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  3. msf

    msf Senior Member

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    Hi Rosie26,

    You haven´t tested positive for Yersinia too, have you? I thought we might have discussed it before, but it could have been with someone else.

    I have experienced something similar to you - Reactive Arthritis without the Reactive Arthritis. By that I mean I had lots of the additional symptoms without the primary one. I had Reiter´s Triad, and later I developed enthesitis. For me though, Yersinia was the trigger for my ME. Perhaps you are tougher than me, and needed another bug to knock you down?

    I believe that some cases of ME are actually the counterpart to ReA, caused by infection with the same organisms but without the autoimmune response.
     
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  4. Clerner

    Clerner Senior Member

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    Sarasota Florida
    Same thing with me. High levels of chlamydia and yersinia. Wasn't sure if it was reactive arthritis or part of ebv, or parvovirus or high coxsackievirus A? Terrible shooting pains, throbbing pain, and tender pressure points that feel like bruises ( fibro?). Is it ME, cfs, fibro? Is it from viruses or bacterial infections. So confusing. Rheumatologist said chlamydia and yersinia were the hardest to get rid of. Suggested 3 abx and plaquenil.
     
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  5. msf

    msf Senior Member

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    Wow, I´m surprised you found a Rheumatologist who is interested in treating the underlying infection, especially a Yersinia infection. Do you know which abx they suggested you take for Yersinia?

    I managed to reduce most of my Yersinia symptoms by changing to the FODMAP diet. I guess this wouldn´t work for Chlamydia though.
     
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  6. Clerner

    Clerner Senior Member

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    Sarasota Florida
    Well, I had many other infections (chlamydia pneumoniae and mycoplasma p.)so i dont know specifically what was for yersinia. Doxy, biaxin, and rifampin, plaquenil and mesalamine, all prescribed for 6 mo, then cycle on/ off one of the abx. I think the mesalamine is an anti inflammatory for the colon.

    No dr or rheumatologist here will give me anything but doxy. So I have only been taking 1 abx. This rheumatologist is from San Diego who deals with chronic infections/lyme/cfs.

    He also had me do 100-200 cfu probiotics and prebiotic for 6- 8 weeks prior to abx.

    Been a nightmare trying to find local dr who knows about any of these issues. The dr from San Diego at the Institute for Specialized Medicine( phd and md) just happens to be friends with my parents. He seems extremely knowledgeable!
     
  7. msf

    msf Senior Member

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    Wow, you definitely had the right parents in this case! I don´t think any of those are for Yersinia in particular, but Doxy should have some effect, as long as you don´t have a resistant strain of Yersinia. Doxy and rifampin was the combination used by Carter for Chlamydia-triggered Reactive Arthritis in his recent paper, so it seems like your doctor is up to date with the latest research. It´s a shame you can´t find anyone willing to prescribe what the San Francisco doc suggested, I didn´t realise that prescriptions weren´t valid throughout the US.
     
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  8. Clerner

    Clerner Senior Member

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    Sarasota Florida
    Infectious Disease doctors won't take me bc they are chronic and not acute infections. Tried 3x with them!
    Even the rheumatologist here took one look and said "I don't even understand any of this" I don't know how to treat chronic infections.

    From all the research I have been doing from Garth Nicholson to others, this Dr in San Diego really does know what he's doing. Even the use of plaquenil lowers the acidic level in the vacuoles of the cells where the germs live, allowing for the abx to work better! Read this other places about about how plaquenil really helps the antibiotics.
    I am lucky he knew all the things to test for, but unlucky I live in Florida and doctors here don't know about treatment with 6 months (or more) of abx therapy or anything related to me/cfs/fibro. It's been a disheartening journey.
     
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  9. msf

    msf Senior Member

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    Thanks for the tip about the plaquenil, the vacuole is where Yersinia lives too, I think, so I will ask my doctor about adding that.

    I can see you are in a difficult situation, I was in a similar one before but luckily for me Belgian prescriptions are good anywhere in the EU. I hope you can find some way to pursue treatment for the infections you have.
     
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  10. rosie26

    rosie26 Senior Member

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    I had the keratoderma blennorrhagicum on the soles of my feet at severe onset ME. I had about 3 on the sole of one foot and 4 on the other. They were hard to heal and I had them for about a month. Haven't had them since. Haven't had any problems with dry eyes or conjunctivitis. I have only in the last 2 years experienced enthesitis and that comes and goes.

    Do you get POTS as well? Do you know if it is a symptom of reactive arthritis at all?
     
    Last edited: Jun 22, 2016
  11. rosie26

    rosie26 Senior Member

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    I don't know why some of these infections down some quickly and others more a gradual progression. I was a really healthy person until I got this infection.

    It was the flu some years later that triggered the onset of ME symptoms and I kept deteriorating each year and then another flu tipped me into severe ME.
     
    Last edited: Jun 22, 2016
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  12. msf

    msf Senior Member

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    So it was someone else who had tested positive for Yersinia? I don´t have POTS, and I haven´t heard about it in relation to ReA, but perhaps someone else has.
     
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  13. rosie26

    rosie26 Senior Member

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    It must have been someone else with Yersinia.

    I'll see if I can find a reactive arthritis forum and see if anyone else there gets the POTS symptom.
     
  14. rosie26

    rosie26 Senior Member

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    @msf I don't know how true this is but I read that someone with reactive arthritis said that the CRP levels are the one to watch for things going wrong with the electrical part of the heart. So far I haven't had abnormal CRP levels.
     
    Last edited: Jul 3, 2016

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