Hey all!
Very very excited here. I've been tested for CPn (chlamydophila pneumoniae) and I only have 3 days wait on the results! My NAC has arrived from USA ($6.95 for 60 caps) and I am so excited.
I have been doing a lot of research on CPn and it's implication in MANY neurological disease - I cannot believe the astonishing evidence! To think that nobody ever bothered to test for it!
I think we should fight to have neurologists test us newly diagnosed MSers for CPn prior to starting CRAB (CRAP) drugs.. I mean, they test for Lyme and all - why not CPn?
M
CPn and MS
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SarahLonglands
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Re: CPn and MS
Goodness, where do you live? I was never tested for anything pathogenic by my neuro: that was left up to my husband, who luckily happens to be a consultant medical microbiologist. The neuro wouldn't even look at the results.
Sarah
Sarah
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
Re: CPn and MS
Australia.
Its common practice for neuros to test for Lyme and like 10 other blood tests on the day of diagnosis
Its common practice for neuros to test for Lyme and like 10 other blood tests on the day of diagnosis
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SarahLonglands
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Re: CPn and MS
I don't know whether a neuro is supposed to do that here, but mine never did. It was so obviously MS, though, that I don't suppose it really mattered. I was too far gone for CRAB drugs to have any effect, not that they make much difference in the entire scheme of things.
You are right: I think neuros should test for Cpn and other things on diagnosis, or if they won't, your GP should. To be treated for Cpn as soon as you are diagnosed must be far better than being treated after years of worsening, when incurable damage might have been done.
Sarah
You are right: I think neuros should test for Cpn and other things on diagnosis, or if they won't, your GP should. To be treated for Cpn as soon as you are diagnosed must be far better than being treated after years of worsening, when incurable damage might have been done.
Sarah
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
Re: CPn and MS
The missing link just might be a bacterial infection.
With my diagnosis, several viral infections were checked at the same time, all came out negative. On the bacterial side only Lyme was checked and it came out negative. Later in another test I was tested positive for Lyme. Never been tested for CPn, but that will be the next step.
In some other discussion forum the CCSVI and MS was already discussed: CPn infects blood vessels and causes atherosclerosis, so it could also infect veins as well. Recently I came across an Australian study, where the researchers John Prineas and John Parratt discovered that prior to demyelination, astrocyte cells that support the formation of the blood-brain-barrier, die. Although in the study the antibodies were found only in neuromyelitis optica. The theory is that demyelination is bystander effect of astrocyte lesion. Well, CPn is known to infect and destroy human astrocytes, so maybe the cause of the mass death of astrocytes is worth looking into.. And maybe there is a link to bacterial infection.
Anyway, I'll start the antibiotic regime, and we'll see..
With my diagnosis, several viral infections were checked at the same time, all came out negative. On the bacterial side only Lyme was checked and it came out negative. Later in another test I was tested positive for Lyme. Never been tested for CPn, but that will be the next step.
In some other discussion forum the CCSVI and MS was already discussed: CPn infects blood vessels and causes atherosclerosis, so it could also infect veins as well. Recently I came across an Australian study, where the researchers John Prineas and John Parratt discovered that prior to demyelination, astrocyte cells that support the formation of the blood-brain-barrier, die. Although in the study the antibodies were found only in neuromyelitis optica. The theory is that demyelination is bystander effect of astrocyte lesion. Well, CPn is known to infect and destroy human astrocytes, so maybe the cause of the mass death of astrocytes is worth looking into.. And maybe there is a link to bacterial infection.
Anyway, I'll start the antibiotic regime, and we'll see..
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SarahLonglands
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Re: CPn and MS
Do start it, but carefully. Testing for chronic Cpn is very difficult because of the intracellular nature of the pathogen for much of it's life. My reading was only 1:64 yet I reacted straightaway to the first antibiotic. My GP would have thought the reading too low to bother treating, but luckily I am married to the consultant microbiologist.
Sarah
Sarah
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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hwebb
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Re: CPn and MS
MsMezza,
would love to know who your neuro is. Mine (also in Aust) never did any blood tests...even though I didn't respond positively to the MS drugs. I'd be willing to change neuro if i found one better than mine - I've tried a few and not been satisfied.
Helen
would love to know who your neuro is. Mine (also in Aust) never did any blood tests...even though I didn't respond positively to the MS drugs. I'd be willing to change neuro if i found one better than mine - I've tried a few and not been satisfied.
Helen