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Mycoplasma Pneumonia causing neurological symptoms?

Discussion in 'Neurological/Neuro-sensory' started by acouchy, Oct 4, 2017.

  1. acouchy

    acouchy Unwilling ME/CFS Participant Since 1996

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    Could mycoplasma pneumonia be responsible for neurological symptoms? I have had ME for 21 years. 7 years ago I started experiencing 7 day migraines. Not long after the migraines started I also starting having episodes of vertigo. Around the same time I was seeing a specialist who tested me for a variety of things and mycoplasma pneumonia came back positive. He did not have much experience treating walking pneumonia and in the end I decided not to treat it because it was not clear that it was responsible for any of my symptoms. Currently, I still get migraines that can last for days but my vertigo has become constant and I am super sensitive to light and sound. I was reading http://anilvanderzee.com/for-patien...he-bathroom-is-similar-to-running-a-marathon/ and the mention of pneumonia, migraines and vertigo has made me wonder if they are all connected and if I have finally found what is causing this nightmare. I am thinking of seeing my GP to ask to be tested for mycoplasma pneumonia to see if it is still positive.

    Has anyone received treatment for mycoplasma pneumonia (walking pneumonia)? How was your experience and did it help?
     
    Last edited: Oct 4, 2017
  2. Hutan

    Hutan Senior Member

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    FWIW
    At the same time as I and our two children got what seemed to be a gastric flu which was the start of ME, my husband developed walking pneumonia.

    Our two children started having migraines as part of the list of ME symptoms. I already had the odd migraine, but they became more frequent after the onset of ME and I experienced migraines with aura for the first time. Respiratory symptoms were not noticeable for the three of us though.

    The children and I have not been tested for mycoplasma. I'd be interested to know how accurate testing for mycoplasma pneumonia is and if there are strains of mycoplasma that could cause respiratory symptoms in humans but might not get picked up by the test.
     
    acouchy likes this.
  3. acouchy

    acouchy Unwilling ME/CFS Participant Since 1996

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    It is fascinating...
    I am not sure how accurate the test is. Hopefully someone who knows more will respond. I know my specialist thought the lyme test here (Canada) is pretty useless. At the time I was tested I had zero respiratory symptoms. I was shocked. I hadn't had a cold or flu of any sort for many (almost a decade) years. I know the first time I got tested for mycoplasma pneumonia it came back as equivocal. So the specialist told me to get tested when I felt really sick. So I dragged myself to the lab when I felt super sick and it came back positive. 4 months later it was still positive. Curious to see if it is still active. The migraine with auras... thinking back, I did have my first one around the time I first became ill in 1996. Went a long time without them. In the last few years I experience aura about 5 times a year. I wonder...
     
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  4. Joh

    Joh Inactivist

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    Hi @acouchy, I'm often IgM positive for mycoplasma pneumonia. After I fell ill with ME 15 years ago, mycoplasma pneumonia was actually the only active infection that showed up on the initial routine tests (that's why I often think about if it was my trigger and if I should treat it and if it maybe got somehow chronic - only my layperson thoughts, no doctor wants to talk about these questions).

    Problem is, I never (or to be precise once) managed to get antibiotics for the IgM infections. They are considered to be "self-limiting" and thus needing no treatment (why I get the tests if it's not treatment-worthy is beyond me). I managed once to try an antibiotic (not from my doctor who refused as always, but from a family member who is a doctor and wrote the prescription) but only for 4 or 5 days and it did nothing (maybe the sore throat and flu-like feeling got a little better for that time, hard to say, it's always a little fluctuating).
    I read from other sources that mycoplasma p in ME would require longer antibiotics (I think Dr. Learner wrote 6 weeks? He also mentions a number that is required to be considered treatment worthy, but my tests have different ranges). By the way Nigel Speight sometimes also mentions (atypical) mycoplasma p in his talks and that it helped some of the children with ME to treat them.

    I've never heard that the mycoplasma p test is considered unreliable, or even as unreliable as lyme testing, so no opinion on that.

    I'd be interested to hear about your experiences if you decide to or manage to get treatment.
     
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  5. pattismith

    pattismith Senior Member

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    Mycoplasma (or Chlamydia) persistant infections may be a result of impaired immunity (like in the Gulf War Syndrome where soldiers were exposed to chemicals like organophosphates that are toxic over mitochondria function. The mitochondria dysfunction may lead to impaired immunity).

    In some case, these infections may trigger some auto-immune diseases like some Multiple Sclerosis cases (Chlamydia pneumoniae), or other neurological disease like Inflammatory Demyelinating Polyradiculoneuropathy

    Severe childhood Guillain-Barré syndrome associated with Mycoplasma pneumoniae infection: a case series.

    https://www.ncbi.nlm.nih.gov/pubmed/26115201

    I was myself exposed to organophosphates (and Formaldehyde) and thereafter got many infectious problems (bronchitis, HSV1...), and many pains (muscles, tendons, joints).

    My only positive serologies were M.Pneumoniae and Chlamydia Pneumoniae and Yersinia (IgG only), but I had also been infected by Bordetella Bronchiseptica (a animal bacteria that doesn't infect people unless the immunity system is compromized).

    I don't know if these four bacterias were possibly involved in my pains, but antibiotics treatment very quickly stopped my spinal pains, and also my hypnic jerks...(four month of pulse treatment)
    They also made my mitochondria worse and I got new muscles, digestive symptoms and fatigue from them, which I have to manage now.
    Any way, I don't regret taking it, it saved my life at that time and opened my eyes on my Mito problems...

    Take care

     
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  6. acouchy

    acouchy Unwilling ME/CFS Participant Since 1996

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    I don't really understand why they won't try to treat it either. I have read that it usually lasts 3 weeks and goes away. Mine was active for at least 5 months (that was the last time I was tested) and that is not normal. You would think that your body must be working constantly trying to get rid of it. I wonder how much that would contribute to fatigue. At the time my tests came back positive my specialist said it would be treated with an antibiotic for about 2 years. At the time, 2 years frightened me. I had been on an antibiotic for 7 days for dental surgery and it caused havoc on my digestive tract. I developed a c-difficile infection. Now because the migraines and vertigo are completely destroying me and I don't think things can get any worse, I am more willing to consider treatment. Unfortunately, my specialist who was willing to prescribe antibiotics long term is no longer an option.

    If I manage to leave the house to see my GP to beg to be tested and it comes back positive and I manage to convince him to treat it or send me to a specialist who will, I will definitely post what happens.
     
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  7. JES

    JES Senior Member

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    I'm in the same boat with you in that I have lab values showing antibody response against mycoplasma, but never had any cough or respitory symptoms. I have both IgM (mild) and IgG (moderate) titers elevated in every lab test I have done for Mycoplasma pneumoniae. I did a long treatment plan with taking both roxithromycin and doxycycline up to half a year each, which are both supposed to be effective against this bacteria. Result was that I started to feel worse around one month in with each antibiotic and eventually had to stop both times after a couple of months. At no point was there any improvement to the lab values or the way I felt with CFS/ME symptoms, so for me it was a waste of time and money to attempt antibiotic treatment. I suspect that either a) there was never any active infection in first place, my immune system just had slightly elevated titers for other reasons (such as generally screwed up immune system that we see in CFS/ME patients), or b) the antibiotics were not effective and only worsened my immunity in the long run (might be the case, but that still means it's pointless to attempt any further antibiotic treatment).

    I have read in newspapers though that some athletes with sudden "CFS like" symptoms have had mycoplasma infection detected and improved once put on antibiotics.
     
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  8. Daffodil

    Daffodil Senior Member

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    @acouchy you should check out cpnhelp.org lots of people there to help with this, I think.

    one doctor (Dr. Wheldon) put his own wife in remission from progressive MS by treating mycoplasma so I am sure it can cause neuro problems. Of course, one cannot be sure that the meds didn't treat something else ....

    xo
     
  9. Wonkmonk

    Wonkmonk Senior Member

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    "We use LabCorp less than 300 as a normal level. The patient is not considered to have persistent Mycoplasma pneumoniae infection unless the initial titer is 600 or more. Mycoplasma pneumoniae is treated intravenously with doxycycline 150 mg IV piggyback for six weeks followed by oral suppression with doxycycline 100-150 mg twice daily or moxifloxacin 400 mg once daily for three months. The goal of this therapy is a serum level which is less than twice the normal. The duration of time again is six weeks intravenously plus a minimum of three months oral suppression."

    http://www.treatmentcenterforcfs.com/documents/mecfstreatmentresourceguideforpractitioners.pdf
     
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  10. Jesse2233

    Jesse2233 Senior Member

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    My understanding is that MAYO's IFA mycoplasma IgM test is the gold standard as other labs use ELISA which is prone to false positive
     
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  11. Art Vandelay

    Art Vandelay Senior Member

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  12. pattismith

    pattismith Senior Member

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    Even Garth Nicholson is publishing on his facebook page! Thank you Art
     
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  13. Asklipia

    Asklipia Senior Member

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    B. Goldschmidt, J. Menonna, J. Fortunato, P. Dowling, S. Cook, Mycoplasma antibody in Guillain-Barre syndrome and other neurological disorders, Ann Neurol 7 (1980) 108-112
    S. Sotgiu, M. Pugliatti, G. Rosati, G.A. Deiana, G.P. Sechi, Neurological disorders associated with Mycoplasma pneumoniae infection, Eur J Neurol 10 (2003) 165-168.
     
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  14. Konflict

    Konflict Senior Member

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    Did your connective tissue feel hypermobile? Like did your joints bend father and easier, tendons and ligaments snap on ur bones very easily/weakly and get worse with time?
     

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