Treating for Chlamydia pneumoniae - a possible cause of MS

Tell us what you are using to treat your MS-- and how you are doing.

Postby SarahLonglands » Wed Nov 17, 2004 3:31 am

My apologies, Daunted for two things: firstly not seeing your query until yesterday evening, due to being enormously busy with helping a friend, new to teaching in further education write lesson plans, when I should really have been getting on with some artwork which I need to have finished by the end of January: then secondly for getting completely muddled as to which of the two Munger et al recent nested control studies was which.

They are both a year apart but have still remarkable similarities, especially in the layout but also in the results.

The first study, from March 2003 was the one to which I was referring in the previous 'infections' posting, yet the one you were referring to was only accepted in December 2003 and published in May 2004. Again, many apologies: it comes from reading too many papers in too short a succession. If you care to look back at the 'infections' posting, you will see that :wink: I am not the only one prone to do this!

Anyway, in short, the 1993 study, involving the Nurses Health Study found, in summary, "....a positive association between serum titers of anti-Cpn IgG antibodies and the risk of MS. This association was stronger for progressiveMS than relapsing remitting MS. It remains to be determined whether Cpn infection or reactivation precedes MS and influences the progression of the disease."

The 2004 study, involving US army personnel and KPMCP, found, as you say, "Neither Cpn seropositivity nor serum anti-Cpn IgG antibody titers predicted risk of developing MS. However, due to the heterogeneity of results between cohorts, we cannot exclude the possibility that infection with Cpn may modify the risk of MS."

The Munger, Ascherio group now seem to be moving on to researching into vitamin d and its role in MS. It will be interesting to see if they come up with anything new here.

You say that you are an eternal sceptic, but a hopeful one. It is good to be a hopeful sceptic, in my opinion. I came upon the antibiotic treatment with hardly time to think about it: David brought the doxycycline home one evening about a week after diagnosis and said, "right, try this!" So I did, not really thinking that anything would come of it: definitely a sceptic but not hopeful. Unusual, because I am a natural optimist.

Incidentally, If you can get hold of the Rogier Hintzen paper it is very well presented and worth reading. We have a hard copy here but I can't lay my hands on it.

Sarah
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Postby Daunted » Tue Dec 28, 2004 11:44 am

Sarah (and all),

I have just began the antibiotic regimen. It's a variation of the Vanderbilt protocol. The doctor I saw in CA was well-informed on CPn, took a very thorough history, and thought it very likely that I would improve on antibiotics.

As you may recall, I am not diagnosed with MS but have positive VEPs and unremitting symptoms consistent with early progressive MS.

I did not have any serological evidence of an active CPn infection but did have clear evidence of a past infection. (Of course, so does about 1/3rd the population).

The one thing that confuses me a bit, is that I see labs advertising PCR tests for CPn that claim impressive rates of sensitivity and specificity.

I haven't had a PCR for CPn, nor seen PCR tests mentioned much here, just the antibody tests, so I wondered...

Are there any academic papers that confirm the unreliability of such tests? The only papers I have seen promote the view that such tests are very accurate.

(In my case it was suggested that CPn might not be confined to my CSF but may have also been wreaking havoc elsewhere in my body, in which case I might be expected to have serum antibodies...I didn't, but I also didn't have a PCR, which is why I ask the question).

This doctor had seen lots of clinical improvement even with seronegative patients, and I also have risk factors for Lyme, so I am definitely undertaking the antibiotic treatment.

I'm going to wait a while before posting any results but wanted to publicly thank you for your posts and information. I have seen four neurologists and none of them have been as helpful as the information and wisdom you have provided.

Whether this treatment is successful or not, without you and your husband (and this forum), I would have never learned of the possibility!

Thanks again.

D.
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Postby Arron » Tue Dec 28, 2004 1:02 pm

We wish you the best of luck, Daunted. Let's hope the new year rings in a marked improvement for you with your new regime.
Disclaimer: Any information you find on this site should not be considered medical advice. All decisions should be made with the consent of your doctor, otherwise you are at your own risk.
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Postby SarahLonglands » Wed Dec 29, 2004 3:21 am

.

Good news Daunted, that you got to Sacramento and saw Mike Powell.

Don't worry about not showing active infection: I didn't. I had the ELISA test and the results were not diagnostic. The result would not have been much different with the PCR test, due to the fact that the C Pn pathogen is an intracellular, cell wall deficient organism for most of its life and thus very difficult to detect. This is why David, among many others, tends to treat empirically.

I wish you well with the treatment and look forward to hearing the results in due time. Meanwhile, good luck with your Ph D studies!

Sarah

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Postby Daunted » Tue Jan 04, 2005 5:01 pm

Anecdote wrote:.

Good news Daunted, that you got to Sacramento and saw Mike Powell.

Don't worry about not showing active infection: I didn't. I had the ELISA test and the results were not diagnostic. The result would not have been much different with the PCR test, due to the fact that the C Pn pathogen is an intracellular, cell wall deficient organism for most of its life and thus very difficult to detect. This is why David, among many others, tends to treat empirically.

I wish you well with the treatment and look forward to hearing the results in due time. Meanwhile, good luck with your Ph D studies!

Sarah

.


Thanks again for the referral. I posted an invite to anyone on Braintalk who wanted to see him but haven't heard anything.

I did find some interesting info on the unreliability of CPn serology in this article from Mayo: http://www.mayo.edu/proceedings/2003/mar/7803r.pdf

It concerns CPn and artery disease; and they clearly note the limitations of conventional CPn serology, if I am reading it correctly.

My empirical treatment continues- just added doxycycline. Will begin posting a log soon.
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Postby Axiom » Wed Jan 05, 2005 10:17 am

There does not seem to be much activity here right now.

Although I don't post much - just wanted those of you who are willing to share your experiences with an antibiotic trial here that I very much appreciate it.
I check in frequently and look forward to your updates.

Thank you
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Postby Tomi » Mon Jan 24, 2005 3:11 am

Hi

I am new to this forum. I have a friend with MS and I thought I would do a bit a research to try to help her.

Just wondering if any of you have seen these 2001 findings in Germany?

"Intrathecal antibody production against Chlamydia pneumoniae in multiple sclerosis is part of a polyspecific immune response

Tobias Derfuss1,*, Robert Gürkov1,*, Florian Then Bergh2, Norbert Goebels2, Matthias Hartmann5, Corinna Barz3, Bettina Wilske3, Ingo Autenrieth3, Manfred Wick4, Reinhard Hohlfeld1,2 and Edgar Meinl1,2

1 Department of Neuroimmunology, Max-Planck-Institute of Neurobiology, Martinsried, 2 Institute for Clinical Neuroimmunology and Department of Neurology and 3 Institute for Clinical Chemistry, Ludwig-Maximilians University, 4 Max-v-Pettenkofer-Institute, Munich and 5 Institute for Medical Microbiology, FSU Jena, Germany


Correspondence to: Dr Edgar Meinl, Department of Neuroimmunology, Max-Planck-Institute of Neurobiology, Am Klopferspitz 18a, D-82152 Martinsried, Germany



Chronic intrathecal immunoglobulin (Ig) production is a hallmark of multiple sclerosis characterized by the presence of oligoclonal IgGs and, in addition, polyspecific recognition of different pathogens such as measles, rubella and herpes zoster virus. While the antigen specificity of the oligoclonal IgGs in multiple sclerosis is largely unknown, the oligoclonal IgGs arising during CNS infectious diseases are reactive against the specific pathogen. Recently, a link between Chlamydia pneumoniae and multiple sclerosis has been claimed. To test the possible role of C. pneumoniae in multiple sclerosis, we analysed (i) whether there is intrathecal IgG production against C. pneumoniae in multiple sclerosis and (ii) if the oligoclonal IgGs in the CSF of multiple sclerosis patients recognize C. pneumoniae. By studying paired serum–CSF samples from 120 subjects (definite multiple sclerosis, 46; probable multiple sclerosis, 12; other inflammatory neurological diseases, 35; other neurological diseases, 27) by enzyme-linked immunosorbent assay, we found that 24% of all patients with definite multiple sclerosis, but only 5% of patients with other inflammatory or non-inflammatory diseases, produced IgGs specific for C. pneumoniae intrathecally (definite multiple sclerosis versus other inflammatory neurological diseases: P = 0.027). The presence of intrathecal IgGs to C. pneumoniae was independent of the duration of disease and relatively stable over time. The major CSF oligoclonal IgG bands from multiple sclerosis patients with an intrathecal Ig production to C. pneumoniae did not react towards purified elementary bodies and reticulate bodies of C. pneumoniae on affinity-mediated immunoblot following isoelectric focusing (IEF-western blots). In contrast, the IgGs in the CSF of control patients with neuroborreliosis strongly reacted with their specific pathogen, Borrelia burgdorferi, by IEF-western blot analysis. Concomitant analysis of the CSF of 23 patients with a nested polymerase chain reaction for C. pneumoniae was negative in all cases. Together, our findings strongly suggest that the immune response to C. pneumoniae is part of a polyspecific intrathecal Ig production, as is commonly observed with other pathogens. This argues against a specific role for C. pneumoniae in multiple sclerosis."

Any thoughts on this ???
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Postby SarahLonglands » Mon Jan 24, 2005 4:41 am

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My thoughts are that this research is four years old and merely shows the very great difficulty that many labs had and are still having, in showing the presence of C Pn either in the CSF or just in the serum. It is a cell wall deficient organism, very small by bacterial standards and has only been recognised as a pathogen for maybe 20 years. This is why many people treat for C Pn infection empirically: I myself did not have diagnostic titres, but started to improve almost straight away, as you will see if you read my personal treatment regime.

Back in the latter part of the nineteenth century, MS was widely thought to be an infective disease and over the years many pathogens have been postulated. Gradually the idea became abandoned and replaced by other theories, but then C Pn was discovered. Since antibiotics are so relatively harmless compared to other treatments and also inexpensive, it is worth in my opinion trying this, because at the very least, doxycycline has certain immunomodulatory properties. Bearing in mind that I had secondary progressive MS and had lost the use of my right arm, now, eighteen months after starting treatment, I should not be able to have resumed my profession as an artist. That is when empirical treatment comes into its own.

By the way, you are a very caring person wanting to help your friend in this way!

Sarah :)
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Postby OddDuck » Mon Jan 24, 2005 5:02 am

Tomi,

I must say that I agree with your post. Even Dr. Sriram at Vanderbilt (who is researching Cpn) has found that IF Cpn is a culprit at all in MS (still not proven), then antibiotic treatment would only be affective in possibly eradicating the bacteria during the early stages of the infection or disease. Once you have had Cpn for very long, it mutates and becomes part of the cell structure itself, and antibiotics do not nor will not even touch it. Something like over 70% of the general population carry the Cpn bacteria (and/or mutations thereof), and not all of them have MS.

He also found (fairly recently) that at the point that an MSer enters a progressive stage of MS at all, attempting to treat Cpn with antibiotics will NOT do a thing to rid the body of the original bacteria itself (because it has mutated).

That's not saying that something in minocycline doesn't help MS at all, but it is highly unlikely that it is because of its "antibiotic" properties. Minocycline has other mechanisms of action that appear to act on the "cascade of events" happening in MS, that indications are could be helpful in MS.

I believe I did some older postings somewhere around here regarding chlamydia pneumoniae, but it appears that you are pretty savvy yourself in your research and will find what I did. But, feel free to do a "search" function within this website itself, and you should locate our prior discussions regarding chlamydia. You may indeed find them interesting.

Welcome to the Board, by the way!!

Deb

P.S. By the way, I live in Nashville, and my neuro is at Vanderbilt and works with Dr. Sriram. :)
Last edited by OddDuck on Mon Jan 24, 2005 5:18 am, edited 1 time in total.
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Postby Tomi » Mon Jan 24, 2005 5:03 am

Thank you Sarah for the quick response!

I have read your treatment regime and it is very very impressive. You are so lucky to have a microbiologist as a husband.
I have been reading about the findings in Vanderbuilt by Shiram but I cannot find anything beyond 1999/2000.
Do you know if their research continued beyond the initial findings or any update on where they are now?


Thanks a lot
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Postby OddDuck » Mon Jan 24, 2005 5:17 am

Oh, oh, oh! I have to correct myself immediately! Cpn is a "bacteria", NOT a virus. I'm going back to change those words in my original post.

Anyway, my understanding is that was what they found out and could not again duplicate anyone getting "better" trying to treat Cpn (as the focus). I believe they are still "looking" at it, but not so much as a focus on Cpn being a direct "cause" of MS. I believe the focus now has sort of switched to what it is in some antibiotics (such as minocyline and possibly others) that help MS.

That's probably why you don't find much else about it. My PCP (who also is on staff at Vanderbilt and is in genetic research) said they just couldn't create any measurable beneficial responses for MS when the focus was attempting to treat Cpn.

Deb
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Postby OddDuck » Mon Jan 24, 2005 5:35 am

Tomi,

Here is a more recent update regarding Cpn and Dr. Sriram's research. www.mscare.org/pdf/MSE_Nov_03.pdf

He still believes that MS is probably caused by something "infectious", but in one of his papers published in 2002, he found conflicting results, I guess (that is what my understanding was, also).

So, as I mentioned, research is still going on, but it's apparently geared still toward whether or not MS is simply an "infectious disease" as opposed to MS being caused directly by Cpn itself.

A clinical trial apparently has just been recently completed, the results of which may not come out for a while: http://www.clinicaltrials.gov/ct/show/NCT00043264

Deb
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Postby SarahLonglands » Mon Jan 24, 2005 5:47 am

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Nearly got you there, Deb! :wink:

This is a link to a pdf file of David's, explaining the C Pn theory in slightly more detail.

http://www.davidwheldon.co.uk/cpn-ms.pdf

If you look at the top of page 4, you will find reference to the 2004 small, double blind trial. I have just deleted much of what I was typing, because Deb has already found part of it. You might also care to look up Rogier Hintzen's work as well: this was an open trial from 2003, but I must go now and eat, because it is well past lunchtime. Then I must get back to work!

Sarah
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Postby OddDuck » Mon Jan 24, 2005 7:30 am

:lol: Yea, Sarah! I couldn't believe that myself! And I myself am one of the biggest complainers about people mixing up "viruses" with "bacteria"!

Wow! What a faux pas!

(Hey, Sarah..........you paint, right? Are any of your paintings online anywhere or anything? I'd love to see your work!) Sorry, that's a little OT, but it just entered my mind.

Deb
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Postby SarahLonglands » Mon Jan 24, 2005 7:59 am

.
Best put down to pressure of work, I guess!

Yes, here is the link to my site, which I made for two other friends and myself: http://www.avenues-of-sight.com

It might ease that pressure of work. :wink:

Sarah
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