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Nitric oxide and its possible implication in ME/CFS (Part 1 of 2)
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Parvovirus B19 in an Icosahedral Nutshell

Discussion in 'Phoenix Rising Articles' started by Mark, Apr 24, 2013.

  1. snowathlete

    snowathlete

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    That story of not expecting to be positive but finding out that you are, is pretty common. I am being tested and waiting for the results at the moment. I don't expect to test positive, but so many people do that I guess I wouldn't be surprised.

    I really hope your treatment works. You may have to try a few things, but given a bit of time you've probably got a good chance of some improvement. One of the papers I read talked about a link bettween Borrelia fragments (where the living organism has been killed off by antibiotics or the immune system) in the joins and continuing to cause arthritis, even after Borrelia was no longer detectable in the blood (dont quote me on that though because my brain is foggy today and it was just something I skim read a while back). I don't think this is the case for everyone though, so hopefully your symptoms will all improve.
    merylg and JT1024 like this.
  2. JT1024

    JT1024 Senior Member

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    Thanks for the suggestion.. I'll check into!
  3. JT1024

    JT1024 Senior Member

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    A patient from another forum was bed bound and was diagnosed as having ME/CFS. She was quite young and it was so sad she was so debilitated. She tested positive for Lyme also and has been treated for quite some time. She has gone from bed bound to actually having a life! I'm so happy for her and it blows my mind that so many of us have struggled and possibly never tested for Lyme.

    I hope your results don't take too long to come back. I also hope it was done at IGenex. I think they are considered the top testing lab for Lyme and co-infections.

    Just when you feel like you've learned what you can about your "condition", it seems like more conditions or diagnoses are added on.
    snowathlete likes this.
  4. kolowesi

    kolowesi Senior Member

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    Wow, that's scary high. Hope you get something to address that.

    I take either Swanson or Vitacost Colostrum with IgG 40%. There is a more expensive brand, whose name I can't remember, but these feel like they help. Can't tell you why, but I trust the feeling. My body wants it.
    snowathlete likes this.
  5. kolowesi

    kolowesi Senior Member

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    Re taking doxycycline

    It was a lifesaver for many years for me, then suddenly seemed to make me worse. There was an article in the Townsend Letter
    http://www.townsendletter.com/July2010/sapi0710.html

    Check out the pictures of the bloom in the round body form of Lyme. I am sure that's what happened to me, but after many years of doxy helping me a lot. My rheumatologist told me that doxy works on the high MMP's (sorry forget what that stands for, but various inflammatory cytokines I think) and I think it helps a lot of people. But some get worse.

    I read somewhere that Dr. Klinghardt shoots ozone right into the large joints of some Lyme patients with good results. I don't have money to see him, so use what I can. Antibiotics I take are azithromycin 500 mg (makes Lyme go into cyst form) in the morning and tinidzole 500 mg at night (kills Lyme from the cysts).

    For inflammation, I get good results from curcumin phytosome called Meriva. I take 1 g three times a day. It may even have helped cognitive, but it definitely helps inflammation pain. My doctor told me her rheumatoid arthritis patients could tell within 2 hours if they missed a dose, and I can tell as well.

    Edit to add, in case you read the Townsend Letter article: I do take Banderol, Samento, Parsley
    Burbur and Noni, but only once a day. If I up it to twice, I might eventually be able to go off pharmaceutical antibiotics. Just haven't done it for reasons of cost and likely Herxheimer reactions.
    merylg and snowathlete like this.
  6. kolowesi

    kolowesi Senior Member

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    Parvo B-19 found in German heart biopsies

    http://jcm.asm.org/content/47/1/106.full

    The HHV-6 Foundation used to have an article showing which different viruses were found in heart biopsies from live CFS patients. Sorry I can't find it. Parvo B19 was the most common. Many people had multiple viruses, with the most common other viruses being EBV, CMV and HHV-6. If I remember, in Germany they used IVIG to treat Parvo B19, but it might have been interferon. Luckily, my heart symptoms got way better on valcyte. I did have CMV in the heart most likely because it was in my stomach lining along with enterovirus and my antibodies were 20 times normal.
    merylg and snowathlete like this.
  7. snowathlete

    snowathlete

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    Thanks for the link, that's really interesting. Can't be good having that in your heart muscle. At least one person on these forums that I have spoken to had a heart biopsy which found B19!
    kolowesi and merylg like this.
  8. snowathlete

    snowathlete

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    De Meirleir talks about Parvovirus in his recent interview with Deborah Waroff:
    http://forums.phoenixrising.me/inde...-meirleir-pt-2-me-cfs-alert-episode-45.23737/

    He says that they see a lot of parvovirus B19 (among other viruses such as Herpes) and that the levels are much higher than you get not only in healthy people, but also in people with acute infection with these viruses.
    I think that's pretty interesting. My B19 IgG was 24.3 which he told me is high. From my own research, people with accute B19 usually have a reading of 5-10 with less than 5 in healthy people.
  9. snowathlete

    snowathlete

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    Neurological aspects of human parvovirus B19 infection: a systematic review.
    Abstract
    Rev Med Virol. 2014 Jan 24. doi: 10.1002/rmv.1782. [Epub ahead of print]
    Barah F, Whiteside S, Batista S, Morris J.
    Parvovirus B19 has been linked with various clinical syndromes including neurological manifestations. However, its role in the latter remains not completely understood. Although the last 10 years witnessed a surge of case reports on B19-associated neurological aspects, the literature data remains scattered and heterogeneous, and epidemiological information on the incidence of B19-associated neurological aspects cannot be accurately extrapolated. The aim of this review is to identify the characteristics of cases of B19-associated neurological manifestations. A computerized systematic review of existing literature concerning cases of B19-related neurological aspects revealed 89 articles describing 129 patients; 79 (61.2%) were associated with CNS manifestations, 41 (31.8%) were associated with peripheral nervous system manifestations, and 9 (7.0%) were linked with myalgic encephalomyelitis. The majority of the cases (50/129) had encephalitis. Clinical characteristic features of these cases were analyzed, and possible pathological mechanisms were also described. In conclusion, B19 should be included in differential diagnosis of encephalitic syndromes of unknown etiology in all age groups. Diagnosis should rely on investigation of anti-B19 IgM antibodies and detection of B19 DNA in serum or CSF. Treatment of severe cases might benefit from a combined regime of intravenous immunoglobulins and steroids. To confirm these outcomes, goal-targeted studies are recommended to exactly identify epidemiological scenarios and explore potential pathogenic mechanisms of these complications. Performing retrospective and prospective and multicenter studies concerning B19 and neurological aspects in general, and B19 and encephalitic syndromes in particular, are required.

    © 2014 The Authors. Reviews in Medical Virology published by John Wiley & Sons, Ltd.
    Firestormm likes this.
  10. maryb

    maryb iherb code TAK122

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    I don't understand how you would get a neurologist to get interested in anyone with ME?
  11. Firestormm

    Firestormm Guest

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    I have had plenty of interest - whenever (as with the review above from @snowathlete ) 'neurological manifestations' were suspected. I think we are talking about signs or symptoms that might be explained as opposed to unexplained. Indeed two of my medications were the result of visits to neurologists, and this latest diagnosis of Apnea is from a neurologist - as is the treatment.

    So, my point being, that in my case at least, having a diagnosis initially of Parva B did not prevent a neurologist becoming involved especially when inflammation was considered to have occurred, and later when the ME was diagnosed, it didn't prevent them being involved either. I know that's not the same for other people - and to be honest I don't actually consider having a neurologist involved to be as 'comforting' or 'productive' as some might wish it was. I think they are as good/bad as anyone else.

    They certainly don't always have the answers - but it's another necessary part of what I call the 'filtration' system. And if anything changes i.e new symptoms occur such as my fitting way back when, I get a referral. The NHS ME Service down here now has a Neurology Specialist as the resident consultant. I am due to see her very soon for the first time - be interesting to see/hear her take on things relating to ME.
    snowathlete likes this.
  12. maryb

    maryb iherb code TAK122

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    @Firestormm
    the neurologist I saw last year was worse than useless, he seemed totally disinterested when the MRI scan didn't show anything obvious.........no scratching of head and a wish to investigate further, a lets try solve this puzzle.......noooooo........ just typical of my experiences with most consultants in the UK. overpaid, money orientated massive egos, patients last.
    You fared better it seems
    Last edited: Jan 26, 2014
    snowathlete likes this.
  13. Firestormm

    Firestormm Guest

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    I think most physicians are primed to see only what they can see: i.e. signs and via patient reports possible clues as to what might be causing problems. Of course some will miss things, and others may well decide it ain't worth investigating further. We do desperately need something for them to work with - some specific 'marker' that distinguishes ME from other things. But then that still leaves the BIG question mark over treatment. I mean for us it would be a HUGE relief to have something definitive found - but then what?

    Without treatment - we are still left with what we have now: basically learning through trial and error how best to manage our lives. Hardly satisfactory. And several of the things I am being treated for could easily - even now - be put down to ME if more becomes known about that disease. But maybe, at least for me, the treatment for Apnea could improve associated symptoms of ME. I mean if it improves my sleep quality, and helps improve my day-time fatigue: then I am not about to complain. But it took me 10 years of asking for a sleep study to get this far - during that time my troubles at night were put down to the ME symptoms of 'sleep dysfunction' or 'unrefreshing sleep'. It's all trial and error - ain't it? :)
  14. snowathlete

    snowathlete

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    Interesting @Firestormm and @maryb to hear your expeirences.
    There is a lot of luck of the draw involved. I was diagnosed by a GP who specialized in ME/CFS and did all the diagnosing at the local NHS ME/CFS clinic in Bath, the closest to were I live. She diagnosed me and said she was certain that's what I had, but as I also had big sleep issues she referred me to a sleep consultant in Oxford and also ordered a respitory study to rule out sleep apnea as apparently it often presents very much the same as ME/CFS. I turned out not to have sleep apnea, but at least it was looked for. Sounds like you Russ, had a much harder time getting the referral for a worthwhile study!

    My GP is pretty unwilling to help me, frankly. But I went to see my gastroenteroloist Monday just gone and when I told her about my cognitive dysfunction in passing, she was shocked that no one had even ordered an MRI of my brain, so although it is very unlikely to be anything to do with my colitis, she has ordered one anyway as she says it should be done whatever.

    There are good doctors, there are bad doctors.
    Last edited: Jan 25, 2014
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  15. maryb

    maryb iherb code TAK122

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    @snowathlete
    yes my story is similar, I was referred to the useless neurologist by my lovely ENT (so I guess not all docs are bad) consultant as he was so concerned about me and not being able to help me. My GPs are shockingly bad.

    I edited a previous post to say most UK consultants are really poor. My experience is they've all been dismissive of ME, if the very first one , a gastroenterologist I saw within 12 months of getting ill,had taken things seriously, who knows what may have happened.

    I do forget about the ENT consultant I see occasionally, nothing he can do for me but he is a very caring doctor and tries his best.

    I hope you fare better with the neurologist @snowathlete , I don't know what a clear scan means if they aren't looking at the right things, but what else can we do in the absence of a specialist ME neurologist.
    Last edited: Jan 26, 2014
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