This Is MS Multiple Sclerosis Knowledge & Support Community

I eliminated my post

Dave, I knew that it was the antibiotics that stopped the relentless progression of my MS because with progressive disease you don't get better, according to conventional wisdom. This progression stopped as soon as I started taking them and I haven't had an MS exacerbation since. I had only been taking Vit D before that, at 4000iu a day, for maybe six months, but I had just carried on progressing. (Copied from your other post.)

I do know that it was the antibiotic qualities and not just the immunomodulatory properties of Paratek because it was such a big change, stopping my MS dead in its tracks and then experiencing gradual improvements of disability. Now I only take two weeks of abx every three months and have no return of symptoms between times.

Sarah

Sarah:

What if the what you claim to be progression and/or exasperations are actually herxheimer reactions or symptoms of die off, and necessary for the body to go through in order to get better?

I can say that as I have gone through my recovery from MS, that I often have "exasperations" and times where I am really tired, achy, weak, more nerve pain sesnsitivies, headaches, etc....and these have been the most blessed times because I know my body needs to go through these things on the way to complete healing.

May "progression" or "exasperations" be fear based given our biased culture, and how it looks at symptoms and the way one "feels"?

Dave

No, it was not necessary for me to completely lose the use of my right hand/arm in order for me to "get better." Those five months were not a "blessed" time, they were the worst five months of my life and I did not become a better person because of it. The only reason I am still alive is because I took doxycycline: you just have no idea how fast my disease was progressing. My neurologist knew, but thought there was nothing that could be done. My husband knew and discovered that there was something that could be done, so did it.

Sarah

beatms wrote:What if the what you claim to be progression and/or exasperations are actually herxheimer reactions or symptoms of die off, and necessary for the body to go through in order to get better?

From my understanding herxheimer is a medical "condition" and can be "diagnosed" as such by a medical professional that understands the condition.

The questionable thing with regard to doing nothing is that thats what sarah was doing when she was progressing, the improvements came when she was doing something.

I have tried the abx's and they did not "work" for me. Statins appear to be the only thing that holds my MS at bay. If I did "nothing" during a relapse I would probably be in a wheel chair now.

I feel the difference between doing nothing and something, and thereby KNOW there is a difference (I think, therefore i am). Medical research (not necessarily talking about abx's here) shows that consuming certain chemicals has some positive effects (and some negative, its like a choose your own adventure story...)

The combination of science and personal experience enables me to KNOW its doing something. If its placebo, then its still something.

A herxheimer, as in Jarisch-Herxheimer reaction, is certainly a medical term, used by people qualified to diagnose it as such and much misused by some other people.

An "exasperation", though, is something I have several times a week.

Sarah

How do you know with absolute certainty that the antibiotics that Sarah took simply stopped a herheimer reaction or healing process, due to overloading her body with die off? This could be the same reason why a lot of people "feel" better taking antibiotics during sinusitis, because the body may just stop the healing process.

I can personally say, that I believe I've stopped a "herxheimer", "die off", or "healing crisis," when I have taken supplements.

Furthermore, has anybody here found any long term studies indicating the safety of these regimens?

I do not claim to answer the above questions for you....My goal by writing is to engage in thinking. So many people that are suffering are so ready to jump on anything out of our addictive nature to self medicate.

Peace,
Dave

Dave, I think you don't understand the meaning of the word "Herxheimer." The antibiotics didn't make me "feel" better for a long while, but they did make me work better. I gradually was able to start using my right arm again, I started to be able to feel things underfoot, whereas my feet had been totally numb for several years. I had rapidly advancing SPMS, for goodness sake, I shouldn't have been doing anything but getting steadily worse.

Incidentally, it was my neurologist who called my disease progressive, not me. I do have the MRI scans to show it, though. They aren't nice.

This dialogue is what I mean by an "exasperation".............Sarah

Dave,

I like reading your posts. I feel inner peace reading what you have to say.

This is only because you annoy the hell out of me.

Hi Dave, Here's what I know. Nobody would question someone with TB or syphilis taking a longterm combined antibiotic regimen to treat their illness. That's been going on a long time, and I'm unaware of anyone trying to stop it due to safety concerns. Who would? The alternative is death. Here's a dirty little secret---MS is deadly. It's rarely an outright killer, but it's an indirect killer. It's not uncommon for people with MS to die from pneumonia or sepsis or other more common maladies that would not have happened if they didn't have MS. Those deaths are recorded as attributable to the secondary illnesses, not to MS. MSers who despair their plight to the point of suicide are recorded as suicides, not as a death due to MS. I don't care to gamble that my husband would be one of the fortunate ones who survives to old age after having lived a reasonable quality of life. That's not the handwriting that was on the wall. I would make the choice to do something that makes a real difference again and again and again....

My husband has SPMS. His MS progression accelerated during his year on Rebif. For more than four months after quitting Rebif, he abstained from gluten and casein and took a very good regimen of supplements. It made no difference; the progression continued to accelerate. LDN made a small difference. Antibiotics made a big and increasing difference. He was sinking so badly last year before starting the abx, he doesn't even remember the first several months of 2006. The nature of the die-off reactions he has experienced are completely different from the MS progression he experienced before starting the abx. The most obvious difference is that MS progression continues and symptoms worsen; it's a one-way street. Bacterial die-off reactions reach a plateau or peak, then abate, giving way to improvement. For someone with a progressive form of MS, progression is continuous and amplifying---it doesn't take a vacation. That is not the pattern of abx work and bacterial die-off reactions. It may be an easier choice and endeavor for someone with a progressive form of MS to do a longterm combined antibiotic protocol,because exacerbations caused by bacterial die-off are less worrisome and confusing to them than they are to RRMSers.

beatms wrote:How do you know with absolute certainty that the antibiotics that Sarah took simply stopped a herheimer reaction or healing process, due to overloading her body with die off?

1. Because she was getting worse over a long period.
2. Abx's are medically known to CAUSE not STOP herx (I think one of us is not understanding the medical term)
3. She had (from memory) herx reactions to the flagyl
4. Herx (again) is a medical condition which can be diagnosed, and I would of thought her husband/doctors (all of ours, if not at least a few) would of diagnosed it
5. nothing in this world can be said with "absolute certainty"

beatms wrote:This could be the same reason why a lot of people "feel" better taking antibiotics during sinusitis, because the body may just stop the healing process.

I personally dont know about sinusitis. But if abx's stop the healing process, then I am guessing that after some time on ABX's they would become/bounce back worse. How long does that take? And when you say they "feel" is it a medically measurable improvement (such as an MRI)? I would like to know the answer to these two questions, they are not rhetorical.

beatms wrote:I can personally say, that I believe I've stopped a "herxheimer", "die off", or "healing crisis," when I have taken supplements.

You appear to be contradicting/hypocritical yourself here, as you appear to be asking for MORE from those on abx's than you require from yourself; what happened to "absolute certainty"? (sorry, that one was ... )

beatms wrote:Furthermore, has anybody here found any long term studies indicating the safety of these regimens?

Not phase III, but there is PLENTY of evidence as to what happens to those with MS who do nothing. We do have plenty of case examples for multi abx regimens for other conditions such as lyme, gulf war condition etc

All I can really speak for is myself. I personally feel that "antibiotic like" supplements slowed down the healing process for me, and wasted a lot of time. I didn't take antibiotics per-say....but a very strong probiotic. I would argue due to intestinal microbial niche displacement and/or competition, that the probiotic I took acted similarly as an antibiotic though.

I can also say, in retrospect, when I had "sinusitis" (which I believe was my body's way of cleansing) I would run for a augmenton prescription, often feeling better quickly. However, the episodes would recur, and the cycle continued and contributed to the detrimental yeast overgrowth , and life threatening c-diff for which I was hospitalized for.

I do feel that my good diet that inhibits yeast and promotes nutrient absorption, and digestion has been a more natural, and thus safer and more effective strategy for me.

-Dave

Thanks, Momiles and CureO!

With regards this:

Furthermore, has anybody here found any long term studies indicating the safety of these regimens?

I might be only trial of one, but I look and feel pretty healthy, if I might say so, and I still have never had a UTI.

Dave,

I like reading your posts. I feel inner peace reading what you have to say.

This is only because you annoy the hell out of me.

Itsjustme, I couldn't agree more!

Sarah