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..

Ken, I often FEEL like #2..Does that count?
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 , how can I explain this better? 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