This Is MS Multiple Sclerosis Knowledge & Support Community

Thanks for the link. Sometimes I just can't enough info. Not to sound like the X-Files show, but I believe the "Truth is out there".

I believe I am not the only one who confuses C. pneumoniae as a STD. A google search revealed this info:

"Chlamydia pneumoniae, proposed new name, Chlamydophila pneumoniae. C. pneumoniae is distinct from other Chlamydia species"

Hello Wilson,

I am writing this from a rather privileged position, being married to the medical microbiologist who took it upon himself to treat me, once I had been diagnosed with SPMS and told that there was no treatment and I should just wait for the disease to follow its course.

David spent a few days doing some research and decided to start me straight away on the antibiotics mentioned above, not even bothering to get me tested until a few weeks later, because I was degenerating so rapidly. Within just a couple of weeks I showed a marked improvement: my speech, which was becoming slurred, returned to its normal crispness, as did my mental acuity. The physical defects are still improving: I noticed only this week that the grip in my right hand is now nearly as strong again as the left hand and my walking is slowly but surely improving. Then, of course, there is the massive improvement in the MRI scan.

As far as being tested for Chl pn, as you will see from Philip’s previous post:

“However, C. pneumoniae may seem an unlikely cause of MS – it is a ubiquitous pathogen and, by the age of 70, nearly everybody will show a positive blood test.”

Here we get into the realms of why only some people get MS when nearly everyone gets a Chl pn infection, but that can be another posting!

It is also a rather difficult test to do with any degree of accuracy, so it is probably better to just try to get your MD to treat you empirically. In the posting immediately above yours you will find two papers that you can download and print out to show your MD.

As far as the downside, there really isn’t one if you take the appropriate supplements mentioned in the pdf, especially acidophilus. I certainly have suffered no ill effects. Thrush and candida are often mentioned but I have never had either. In the Vanderbilt trial it has been shown not to be a problem at all.

Best wishes to you and everyone else as a new member,

Sarah

PS: The proposed new name is very sensible to my eyes.

Hello Everyone and apologies to Cathy,

I thought it might be sensible to start a new discussion on chlamydia pneumoniae, since we seem to be getting away from the original posting somewhat. I will transfer all relevant details to the new posting.

Best wishes,

Sarah

Hi, folks! Some of these threads tend to overlap sometimes, and I posted these similar remarks on another thread, so I thought I'd post the same ones here.

I live in Nashville, Tennessee! My next appointment is going to be with the Vanderbilt neuros you are talking about here (Sriram and Moses).

My PCP works fairly closely with the Vandy folks. My PCP is also a PhD geneticist and also is (or was) a professor at Vanderbilt (and still maintains staff privileges there.) My former neuro came from the Mayo (Moses Rodriguez was his mentor for many years, and Claudia Lucchinetti was his colleague.) He and I had a parting of the ways, though, so I'm heading off to Vandy now.

Anyway.....when I go to see those guys, I'll just ASK them "what's up". (Although, my PCP did mention to me at my last appointment with him this particular “antibiotic” theory they were excited about a few years ago, but to my understanding from what he said, they were unable to replicate the same beneficial effect again, so it sort of "died out".)

But I see that minocycline itself has emerged lately.

All this is WAY too coincidental! HAH!

Oh.....as clarification, by asking them "whats up", I meant I plan to ask them about minocycline.

It appears that there may be conflicting theories being published about how minocycline DOES help MS....via the "viral" pathway (which doesn't sound correct to me, because of the fact that antibiotics don't affect viruses), the "allergy" or bacterial pathway, or via its inhibition of caspase-3 (an enzyme that is part of the cascade that mediates programmed cell death). My personal thoughts are that minocycline accidentally exhibits it effectiveness for MS as something totally unrelated to its original intended use.

Personally, I believe I’m of the same opinion as Finn………that it is due to the programmed cell death (caspase 3) effects.

Interesting stuff!!

Deb

finn wrote:Minocycline is a very promising agent and it has been studied in laboratory models of various different neurological disorders (spinal cord injury, ALS, stroke, etc.). It has been found to be both antiinflammatory and neuroprotective. It is also very safe with only minor side effects, isn't it?

This is a comment by a group of Canadian researchers, who are studying it in a small clinical trial: "we chose minocycline since it anecdotally appeared to improve the condition of MS patients who were using it for acne relief."

There is more discussion about it in this thread and this editorial.

-finn

Minocycline Suppresses Disease Activity in Rat Model of MS

NEW YORK (Reuters Health) Feb 11 - Minocycline's ability to inhibit microglial migration and to suppress T-cell recruitment into the central nervous system appears to reduce neurologic deficits in a rat model of chronic relapsing-remitting multiple sclerosis (MS).
Dr. Ian D. Duncan, of the University of Wisconsin in Madison, and colleagues immunized rats with myelin oligodendrocyte glycoprotein (MOG) to induce experimental allergic encephalomyelitis (EAE). Clinical state between days 12 and 42 post-immunization was scored on a scale of 0 to 5, where 0.5 represented partial loss of tail tone, 3 represented hindlimb paralysis, and 5 represented death.

The mean cumulative score in EAE animals treated with placebo was 54.11, Dr. Duncan's group reports in the Annals of Neurology for February. For rats treated with minocycline from the 10th day after immunization, the severity of the initial phase of disease and the duration of subsequent relapses were suppressed. The cumulative score decreased to 7.43 (p < 0.001).

When the same dose was given from the day of clinical disease onset, mean cumulative score added up to 26.25, suggesting, the investigators write, that the drug can suppress established clinical disease.

The number of T cells in the spinal cords of minocycline-treated EAE rats was significantly reduced compared with sham-treated rats. Matrix metalloproteinase was absent in treated rats, while it was upregulated in areas of inflammation in the sham-treated rats.

The increase in matrix metalloproteinase expression was accompanied by the presence of rounded, activated microglia. Minocycline treatment resulted in most microglia exhibiting a resting state with long branched processes.

The researchers found that minocycline altered the MOG-specific autoimmune response, such that the counter-inflammatory cytokine IL-10 was increased in draining lymph nodes.

Minocycline "has the potential to be more effective than beta-interferon or glatiramer acetate," Dr. Duncan told Reuters Health. It could also represent a beneficial adjunct therapy, he added.

He and his associates speculate that minocycline "could be given to patients with relapsing-remitting disease early in its course, and prescribed for 1 to 3 months. We hope at that point it would block ongoing disease and that it would not have to be given as continuous therapy," he said.

Even if the course of the disease required ongoing therapy, he pointed out, it is very safe, having been used in the treatment of rheumatoid arthritis for months or years with minimal side effects.

Dr. Duncan described a clinical trial that has been initiated at the University of Calgary, which should provide initial results within 6 to 9 months. It is planned to run for 2 to 3 years.

The one caveat he offers is for physicians to avoid "jumping the gun" and prescribing minocycline for MS patients before results of the clinical trial are reported. Otherwise, "the results of the trial may become clouded if we begin getting anecdotal reports," he said, adding, "6 or 9 months is not that long to wait."

Ann Neurol 2002;51:215-223

Oops, maybe this thread does not need any more information about the Canadian clinical trial.

-finn

[edit: article removed]

.............Here is what was prescribed for me and the results it is having:

rifampicin, 300mg twice a day
roxithromycin, 150mg twice a day (which would have to substituted by azithromycin in the States)
B-12, 50000mcg sublingually every day
co-enzyme Q10 in large dosages
4000mg Fish Oil per day
Vitamins A,B,C,D,E, selenium and magnesium in large dosages
acidophilus, several capsules as required.

Also, five day bouts every three weeks or so of:
metronidizole, 400mg three times a day

10 months ago I could hardly walk unaided or use my right hand due to rapidly progressing SPMS, now I am able to walk without needing even a stick for quite some distance, I can use my right hand relatively easily and my fatigue levels are greatly diminished.

Sarah

Just an FYI re: ongoing study of minocycline is those rats.

I've just checked out the NMSS Research Projects beginning 4/04. Ian Duncan was awarded $413,576 for 3 years (4/04 to 3/07) to study Modulation of microglia by minocycline in CNS disease

The team is focusing on the ability of oral and injected minocycline to block the activation of microglia in mice with EAE at various stages of the disease, and studying its effects on symptoms and on nervous system tissues. This study may yield a new strategy using a widely known antibiotic to treat MS, and possibly to prevent disease progression.

So, in addition to the Canadian trial there will be more mice work to shed light on how it might work. I thought it was interesting that NMSS acknowledged that minocycline might prevent disease progression.

Sharon

Sorry, time to leave the board.

-finn

Sorry, time to leave the board.

-finn

finn, thank you very much for this posting. It indeed sounds highly promising. I will be talking to my neurologist about it quite soon. I'm going to read it a few more times before offering further comment.

I posted on a different board about minocycline. Here is a link to that discussion

Sorry, time to leave the board.

-finn

At the AAN meeting, scientists reported on the first clinical trial of minocycline in MS. Ten patients with active relapsing-remitting MS were enrolled in the study. After a three-month observation period, treatment was initiated with minocycline by mouth twice daily. Whereas prior to treatment, 80% of patients had active MS by MRI scanning, none of the treated patients have shown subsequent MRI evidence of activity, as much as nine months later. There have been no safety concerns. It is likely that larger MS trials of minocycline will be initiated over the next year.

Only ten patients in this study. Is it promising? Really?