Chlamydia pneumoniae and its link to MS
 

This is quite interesting -- published 2 days ago.

http://www.msrc.co.uk/index.cfm?fuse...ow&pageid=1076

Maybe this is why the studies using minocycline (antibiotic) treatment for MS have hinted at some success.

Had to bookmark that site. What a bunch of seemingly wonderful studies!? Even if they don't pan out I love reading about advances and more understanding. Of course I really, really hope they pan out and if antibiotics turns out to be the answer WOW. My uncle went through all this in the 70's and got dx'd in the hot tub. I'm glad at least I'm dealing with it in a time that's got a little more hope.

i looked up those two big words, hmm ...........


....Chlamydia pneumoniae is a species of chlamydiae bacteria that infects humans and is a major cause of pneumonia. Chlamydia pneumoniae has a complex life cycle and must infect another cell in order to reproduce and thus is classified as an obligate intracellular pathogen. In addition to its role in pneumonia, there is evidence associating Chlamydia pneumoniae with atherosclerosis and with asthma. The full genome sequence for Chlamydia pneumoniae was published in 1999.

Chlamydia pneumoniae also infects and causes disease in Koalas, :yikes:emerald tree boa (Corallus caninus), iguanas, chameleons, frogs, and turtles.

The first known case of infection with C. pneumoniae was a case of sinusitis in Taiwan.

This atypical bacterium commonly causes pharyngitis, bronchitis and atypical pneumonia[1] mainly in elderly and debilitated patients but in healthy adults also.[2]


hope our Koala is reading this

thanks Natalie

Sheesh, Frank, I had a rip snorting Sinus infection, about a year before I was DX with MS.:eek: I wonder if there is a connection.:confused:

yeah its got me a thinking too i get pneumonia once to twice a year and had it real bad(hospital visit in a big red noisy van thingy) :rolleyes: before i was DX too

Frank and Sally: Very interesting that you had these huge infections (assuming bacterial) before you got diagnosed with MS! Frank, have you ever thought of asking the doc to prescribe 100 mg. of minocycline a day. It would be an interesting trial to see what happens if you take it daily. I know someone with MS whose doctor prescribes Avonex and the 100 mg. of minocycline a day. I'm actually on minocycline daily because I developed adult acne last year...yup, I feel like the teenager I never was (no acne as a kid). Sometimes I wonder if this MS thing just screws with all systems in the body and knocks everything out of whack.

Three months before I was dx'd I was sick for month with a bacterial sinus/head/lung infection that took two rounds of antibiotics. I've always thought that had something to do with it.

I seem to remember a sinus infection, it mustv'e been at least 4 years before my dx. I read somewhere where they felt that people diagnosed with MS needed a "triggering event." Could this be it?

WOW...thanks for this! I was just skimming through it and it caught my eye when it said{snip} It is now recognized as a cause of pneumonia, pharyngitis, bronchitis, and several chronic diseases{end snip}

During the mid-late 90's I was often plagued by pharyngitis. My first bout with ON was March 2000. How coincidental!!!

There is an informal entirely non-authoritative way to get a hint about this. There hasn't been much discussion of antibotics at this site, how come? Ken

I take it you are an AB lover/user?? I do think that ABs help slow some types of MS, just not all types.

We need to learn more about what causes our individual MS, in order to find the proper treatment, don't you think?

Thanks for your input.:)

I had a terrible case of bronchitis (actually two cases back to back) in March before I was dx in October. While I know I had MS before this (had sx two years before but had no dx then) this could have been what brought it "out".

Don't you build up a resistance to abx if you take them continuously? What happens if you need them for an specific infection?

:)

That's interesting. Have you suspected a bacterial component to your MS for a while?

This may be the case with some abx, however, it has not been a problem for those on the Vanderbilt Antibiotic Protocol. Ken

I believe that a severe case of Mono that I had when I was 19 (1979) was what laid the groundwork for my MS. I had sx in 1987 (numbness & visual sx during pregnancy).....then nothing again until 2003 (both legs were numb for several weeks). Then in 2005 the big whammy......double vision that lasted nearly 6 months. That's when I got my dx. After the double vision cleared up I had Bells Palsy in the right side of my face.

I think as more neuroimmunologists are "trained" we may learn more about some factors that trigger MS. It is a fairly new "sub-specialty" and hopefully will prove to be beneficial to not only us MSers but many others as well.

I actually got to see one as part of a trial I was in. It was pretty interesting talking with him.

I think that PwMS, who think their MS was caused/triggered by a bio-illness, should try the AB treatment. If it helps, then you chose the right treatment.

If your MS was triggered by a virus, then some have found help with an anti viral med, such as Valtrex. I don't think Anti biotics will help here? Some people have found that Valtrex will halt an exacerbation.

I would love to hear from someone whose MS has been slowed, halted or cured by the long term. Vanderbilt Treatment.

Kim doesn't qualify under the Dr. Weiner definition of "personal cure" (3 years without new symptoms/disability), but she is half way there at 18 months with some symptom reversal.

I would be happy to explain anything I can about the protocol. Ken

I completely agree with this! I read tons about CP when I was diagnosed and thought (and still think) it makes a lot of sense. That said, I believe that we did not all get here the same way, that there are more subtypes of what we presently call MS and as Sally indicated, that successful treatment might very well have to do with our own individual MS.

BTW, I also found a study regarding sinusitis and MS -- I thought it was strange that I was seeing so many people who were dxed after having respiratory illness.

Bearygood, have you done the NAC test? Ken

Ken, from what I read in this link, it seems to suggest that we would have been exposed at about the age of 11, and that each infection contributes to our progression.

Has Kim done the entire "schedule of treatment" protocol listed at this link, including all the vitamins and dietary changes?:

http://www.davidwheldon.co.uk/ms-treatment1.html

Cherie

Cherie,
David has a really nice site. The pathology of CPn escaping from the lungs may not be age dependent. The issue of CPn gunking up your body outside the lungs is best laid out by the cardiology folks via Atherosclerosis. But, if you really spend time on the pathology of arteries and the involvement of ICAM-1, the story starts to take shape. There's a keeper article on this - Watson and Alp, 2008 Role of Chlamydia pneumoniae in atherosclerosis. So then what happens when it gets in the brain?

There are slightly different variants of the protocol because of the availability of drugs varies in the UK. But, the true Vanderbilt protocol is Rifampin, Azithromycin and Flagyl. Secondary non-scripts that are part of the protocol are D3 and Pyruvate/Caffine. NAC is often used too. No one really follows ALL the recommended supplements, but after a die-off most everyone takes loads of charcoal.

I should note, much of the impact MS'ers feel when they take an antibiotic is related to die-off and/or secondary porphyria. There are a ton of threads out there about how someone took abx and it made their MS worse. Absolutely true, but the underlying "worse" actually demonstrates a high likelihood of hidden bacteria. The key in the protocol is to agressively go after the bacteria with a methodical longterm battle plan. ABX is a commitment, it's not something you can "try".

Kim has just completed 18 months on ABX. She will likely be at least 18 more. She no longer needs pee pads and she can walk way faster than before. There's more, but that's a start. Ken

Interesting you mention porphyria ... I looked into that extensively because King whoever-he-was, was dx with that, and his grandson was the first diarized case of MS. I wondered if there was a link.

Cherie

Good Morning Cherie. :)

Within the context of abx porphyria is often referred to as secondary porphyria (CPn caused disruption of the Heme Pathway) to distinguish it from primary porphyria (genetic based disruption of the Heme pathway). Here's a link that gives a pretty thorough explanation of the issue for folks treating their MS with ABX - Understanding Secondary Porphyria when Treating Chlamydia Pneumoniae Associated MS.

Kim and I keep Glucose tablets on hand and Kim takes a handful of charcoal caps every night. This seems to help a lot. The key to combating MS this way it to build an understanding of the chemistry involved. It is not easy and it is entirely unproven, but the entire concept is built on a pretty complete hypothosis and others besides Kim are walking again because of it.

Ken

Sally,

IMHO, I see the 2 paths in MS - 1) I see folks listening to the neurologist, selecting from the NTCRAB's and hoping they don't get worse anytime soon. 2) I see folks listening to the neurologist, assessing the limitations on the neurologist and setting out to find out what the neurologist can't tell you.

ABX falls within #2. It's off label. So are statins, provigil, stents, LDN and a whole host of other things. I don't know so much about those things, but I know folks are doing them and often swear by them.

Kim used to fall into the #1 group. MS was like a dark cloud. We'd go through our days, weeks and months with this sense of hope that tomorrow wouldn't be the day Kim's legs got numbness signalling an exaserbation. Now, this worry is gone. Moreso, we have a brighter outlook, looking forward to the next day that some MS related disability will be overcome somemore. So we used to hope that it wouldn't get worse, now we hope we see improvements sooner.

As I see it, one has to decide to be a #2. I'm not talking about choosing which supplement to take, I'm talking about seizing control of your illness from your neuro. Kim has done this, others have done this, but it requires a tremendous amount of personal responsibility to do this. You have to know what you're doing and why your doing it. I have spent the last 2 years reading reams of medical journal articles. It is an investment of time to decide you're going to know more about some facet of MS than your neuro, but you can, if you really want to. But, Kim didn't have to wait for the FDA to approve anything and we don't have to buy bulk pee-pads anymore.

There are some simple ways to explore whether antibiotics might be worth looking at. For example, if one takes NAC for a few days, gets flu-like symptoms, it would be a pretty good idea to learn more about this approach to MS.

Sally, you said "In order to find the proper treatment". No one knows what the proper treatment is for everyone, but that's not going to prevent us from making educated guesses about things. The alternative isn't very pretty. Ken

I understand completely, Ken....I'm an LDNer, for almost 6 yrs now. I still have MS but, like your wife, on her med choice, I feel better and am able to move a bit better, too.

Having tried a couple (copaxone and avonex) to no avail, I will no longer use any of the DMDS, past or future. I'm comfy where I am, waiting for a cure..:)

Good wishes to you and DW..:hug:

Ken, I often FEEL like #2..Does that count?:D
I've tried Rebif & Copaxone, LDN and now Tysabri. Still waiting to get something resembling a life back..Thanks for all the info, though. It helps to have more to think about.

we all got to start somewhere. surprise, but I was very skeptical of this when I first learned about it. Feeling is a start. You might feel like you car ought to be looked at, you might feel like your flower beds are a mess, you might feel like you need new clothes. It's a start to be dissatisfied. I've been there, I get it. The next hard part is deciding you're sick and tired of it and something needs to be done to change things. Ever read "Who Moved My Cheese"???

not everyone who has done abx has gotten there life back, if that were the case, I wouldn't be here and Kim's Doctor would be flying us to Stockholm. But, my point is that there are folks out there who have beaten this thing and when folks like me try to tell the story, it's largely ignored. Like it's too good to be true. I promise, it's not a free ride, it's hard. But, an openness to self education is the first step, yes? I may be new here, but I promise you, I've been chasing MS for a few years now. Push me :Poke: , how can I explain this better? :Tip-Hat: Ken

Thanks for this statement. I wish more people had the courage and control to take control of their own bodies. My doctor does not own my body, when my first neuro made it clear that he would not accept me to do something he did not approve, I switched to a neuro who is still mainstream but who says "it's your choice". Would love to hear more about your journey.

I don't quite know where to start. I have a ton of info I can post, but I also know that I'm new here.

I guess where I'm at is a place of uncertainty because I'm a long time poster at another board and I know when someone new shows up and has something completely new and different to say, it goes largely ignored. I can't blame folks for that, I'm guilty of it myself.

I don't want to come across like the sham-wow guy.

I also know that most all of us are "raised" on autoimmune therory. I've been there and done that. I know about, have posted about and read endlessly about cytokines, TH1, TH2, Macrophages, NK cells, etc. It wasn't until I got fed up with the neuro offering the same thing over and over again that I decided that there had to be others who wanted to find a path beyond what the neuro tells you. Funny thing is, there is.... and while many are up in arms over the heathcare debate, I feel that I've been trying to expose healthcare for a quite a while now.

I'm rambling. In a nutshell, my perspective on MS is so different, I know it is and I know it's hard to interest others when it all sounds like snake oil. But, it's not unique to me and there are published articles in real medical journals that support this approach. Ken