This Is MS Multiple Sclerosis Community: Knowledge & Support

Hey Guys,

I've been participating mainly over in the forums for HiCy and Tovaxin, but I stopped by here out of curiosity and did a little reading. Question: if a treatment such as HiCy (in which patients are blasted with high-dose chemo, their immune systems completely destroyed and then "rebuilt" afterwards as "naïve" immune systems [see: http://www.hopkinsmedicine.org/hmn/W08/feature1.cfm if you aren't sure what I mean]) appears to work with MS patients, would that necessarily rule out the possibility that MS is caused by chronic infection with Chlamydia pneumoniae?

I guess this is partly an immunology question.

What I am asking is this:

Would/could high-dose chemo like that in HiCy be so potent that it would actually destroy all bacteria in addition to destroying the immune system, thus (at least temporarily) "curing" patients of MS? Could this potentially be how/why it works?

Or, alternately, is this the kind of treatment that would ONLY destroy the immune system (but not a bacteria such as Chlamydia pneumoniae), such that, assuming active bacterial infection were present, HiCy should actually make patients SICKER by depriving them of all immunity in the face of a chronic infection?

In other words, does the fact that HiCy works potentially either provide evidence for or, alternately, potentially refute the hypothesis that MS is caused by a chronic bacterial infection with Chlamydia pneumoniae?

I appreciate your replies...I am very interested to know one way or the other.

Don't know, but I'd guess it's because much of the bacteria is destroyed by the outright devastation of the chemo. It just seems such a waste to take your immune system down to nothing when it's not your immune system's fault it doesn't recognize cpn (because it's hiding within the cells) and therefore doesn't kill it.

If you kill the cpn with antibiotics, then your immune system can resume functioning properly and you haven't compromised who knows what else in your body with the scattershot approach.

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The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Well, one immune system bashing drug which, although not chemotherapy is definitely not used for people with secondary progressive MS is Campath, which although it seems to have very good results on people with early RRMS, was found to make people with SPMS get worse much faster after an initial honeymoon. One could surmise that with people with early MS the CPn load was low enough to be eradicated with the rebuilding of the immune system, but no such luck later on.

Sarah

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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.

*Sigh*

It's just so hard because there is so much conflicting information out there. Like...no one has proven that it's cpn...and no one has proven that it's autoimmune. So it seems to me, sometimes, like EVERY treatment is just a shot in the dark.

Or, alternately, one could surmise that in the earlier stages (i.e. - RRMS) of the disease (assuming, hypothetically, that it is auto-immune), the immune system, while still "out-of-whack," is not nearly as out-of-whack (and/or hasn't been for as long) as by the time SPMS comes along. Thus, it's still somewhat "malleable" and "plastic" or "retrainable" via destruction and rebuilding. The disease activity has started but hasn't yet become a "set program," for example, and its course can be changed. Whereas by the time SPMS sets in, the damage has been done.

Similarly, there tends to be a lot more (and a lot more severe) cumulative physical damage by the time SPMS sets in, and this could simply be something from which the body is unable to recover.

What's the deal with Campath?

I understand, I've been there.

But, it's not hard to decipher a reduction in disability. Not hard at all.
Avonex didn't do this. Copaxone didn't do this. Novantrone didn't do this.

ABX has. I'm not sure that we really need to know more than that.

Yes, I have over simplified it here, but my complicated journey of disernment is typed up here at TIMS for all to see. It is not simplified if you care to read it. Kim is 4 months in her ABX treatment and she is beginning to see a reversal of the progression of symptoms. Key word, beginning.

Ken

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My Starting Point
Understanding MS 101: Doctor Talk and People Talk<br /><br />

I don't think it's quite as simple as this. Some of the people doing HiCy and Tovaxin are also seeing a "reduction in disability." One of the things we need to keep in mind is that MS is a disease of inflammation and antibiotics are anti-inflammatories. Therefore the "improvement" that people are seeing due to antibiotics could simply be the result of their anti-inflammatory property. It may well be that as soon as Kim discontinues her antibiotics, her symptoms return. Alternately, it may be that MS has a bacterial cause in some (but not all) people, meaning that antibiotics would only be a solution for some (and not all) of those affected by the disease.

Personally, I am not ready to jump on any particular treatment bandwagon just yet. I inject 44mcg Rebif 3x per week and am investigating (but not yet committing to) other options for long-term remission, such as HiCy, Tovaxin, etc.

Agreed, nothing about MS is simple



There may be more than one way to skin a cat. I for one do not feel that Tovaxin and ABX need be exclusive of each other. I still own shares in Opexa.



Then wouldn't folks who have completed ABX after 2+ years and stopped be having exaserbations? This doesn't seem to be the case. I don't need to put the word "improvement" in quotes. Improvement, means definite, measurable and measured reduction of disability. It's not a feeling, it's not a guess. Actually, you'll find that folks on ABX experience a fair amount of inflamation as part of the side effects of the therapy.



Guess you can't know until you try it.



Look, I'm in a mood tonight and I'm not trying to be a pain in the butt. I've traveled this road. I've asked for proof and I've waited and waited until, I was told that if I really want to know, I'd better get my act together and start reading about it. Honestly, sitting here and debating it, will get you nowhere. I know, I did the same thing. If you really think you want to know about ABX, you need to spend some time reading about it. No one can give you the magic link of brilliance in a single post here at TIMS. You really need to just set your mind to educating yourself about the course of action you feel most interested in.

Ken

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My Starting Point
Understanding MS 101: Doctor Talk and People Talk<br /><br />

Ken, Your MS 101 link at the bottom of your posts does just that, and as thoroughly as several weeks of research would take for most people. It's a nice piece of work and shortens the cpn research path considerably for those who study it.

And, yes, it's true more than one course of action/treatment might kill cpn or whatever we want to think the cause of MS is, but this protocol is designed to not kill the patient while healing them, so it was a good bet for me. I'm not into steroids, interferons, etc.

Xenu, Taking Rebif IS a course of action and if someone's benefitting from it, wonderful. But I still think taking any of the CRABS drugs means addressing the result of the disease, not the cause of it.

_________________
The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

That's probably why LDN works in so many MS cases, it regulates/boost immune system contrary to the common belief that boosting it will increase autoimmune reaction!
By the way ABx protocol interferes with LDN?
My wife has last few days a cold sore throat-rainy nose, her symptoms are quite common on CPn so I am thinking of the ABx protocol.

DIM, (you sound anything BUT dim) - Many people on the antibiotic protocol also take LDN. I've not heard of any problems. I do hear about wild and crazy dreams on occasion, though. My dr, who treats cpn cases routinely, suggested I take it. (I don't.)

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The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Ken said, "Look, I'm in a mood tonight and I'm not trying to be a pain in the butt. I've traveled this road. I've asked for proof and I've waited and waited until, I was told that if I really want to know, I'd better get my act together and start reading about it." I was one of the people who told him that and I finished antibiotics nearly a year ago after taking them for one year full time and three years intermittently. I am still showing improvements and nothing has started to come back.

I am also in a mood tonight because last week I was told of someone five years as younger than me, who I first met when she was in her last year at music college. She developed MS at about the same age as me, twenty four. When she started to get worried because her MS was turning progressive I tried to persuade her to start antibiotics. She was leaning in that direction when she was told about colloidal silver and someone's miraculous cure by bee stings. She saw her neurologist and told her about al three things, with the result that the neuro told her I must be mad and arranged for her to go on some trial for people with SPMS. Now I am unbelievably better but she is dreadfully worse, with carers coming in three times a day to do everything for her. She will only get worse and be one of those people like I should have been according to my forer neuro who die from something caused by MS, probably quite soon. I haven't dared ask where her husband and two young children are: I hadn't seen her for years because we live at opposite ends of the country. She was an orchestral violinist.

Sarah

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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.

Ken,

With all due respect, all I wanted was to discuss antibiotics. I understand your point about "talk does nothing...you want to really do something, take action!, etc." but that really wasn't my goal in coming over to this forum. I had some questions and was curious about some things, and I am glad that I've gotten replies from people here. So I got what I was looking for. Am I going on antibiotics? No, probably not.

-V.

McKintosh, I agree with you and am not insinuating AT ALL that Rebif is any kind of "long-term" solution to my MS, because I know it's not. My only point was something like: "Ok. So for now I'm on Rebif (which seems to be working because I haven't relapsed in the 8 months I've been on it), and while I am in a 'holding pattern,' let me look at some of the potentially long-term options available to me. The problem here is that we don't KNOW what the cause of MS is.

Anecdote:

So then naturally you must be able to understand why people like me are skeptical of literally every "miracle cure" proposed. To me---at least right now---antibiotics fall into the same category as "magical lasers," "change of diet," and "getting fillings removed." I regard them all (and also treatments like HiCy and Tovaxin) with a healthy dose of skepticism. I admit that one factor that makes me really leery of antibiotics is the fact that some people in this forum have had to either order them through the internet or otherwise "self-dose" and then lie to their neurologists and/or GPs about their "secret treatment."

Anything you have to lie about to get makes me uncomfortable, because it suggests that it's possibly not a good treatment option in the eyes of the medical community---just like colloidal silver and "Rife machines."

I understand that you swear by abx because they worked for you personally, but I've also noted at least one other individual on the forum who has reported that, even after years of them, his disease has actually gotten "worse" (his term, not mine) rather than "better." So abx are clearly not a "cure-all," and there is not, IMO, a significantly substantial body of medically-accepted, peer-reviewed, published work to indicate that MS is always caused by CPn.