What works

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

Postby Terry » Mon Nov 26, 2007 5:50 pm

Hutto, Chad has been sulking for the last few weeks. It was good to see him back in form. When he is "up" he is very entertaining. Cincinnati loves his football and his attitude. (most of the time)
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Postby CureOrBust » Tue Nov 27, 2007 12:56 am

gwa wrote:What are you referring to about the Flagyl?
The flagyl can cause what those on the ABX's call pseudo relapses. The last one I had from flagyl was too soon after a real one, and they combined to cause some more serious issues.
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Postby gibbledygook » Tue Nov 27, 2007 5:36 am

I also had a bad flagyl experience. After about 70 days on this drug and 21 hours of an infrared sauna, I suffered my worst ever relapse and my walking became really bad after just 15 days on this drug. I had noted this in the past but had never managed longer than about 10 days on flagyl. This is a very strong antibiotic and seems to have quite negative side effects.
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby gwa » Tue Nov 27, 2007 9:01 am

COB,

I have been taking the abx's since the end of August and have not noticed anything different about my health or symptoms.

Now I am going to start taking the Flagyl and was curious about your post.

It is my understanding that if I continue to not have any problems with the abx that I probably don't have Cpn.

Thanks for the info.

gwa
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Postby viper498 » Wed Nov 28, 2007 7:23 pm

This thread has really discouraged me. I keep coming back to it. I hate not knowing what is going to happen to me. Just when I think Minocycline May be a good thing-everyone reports no success with it.
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Postby Lyon » Wed Nov 28, 2007 7:36 pm

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Postby sojourner » Wed Nov 28, 2007 8:21 pm

Oh boy, I think some people who have had great success with abx have just not read this thread.

My husband is doing really well. He will be on abx for two years in Jan and I think he is getting close to intermittent treatment. His abx experience includes minocycline which he made some of his greatest strides on. All signposts point toward improvement of his MS. He feels better and most of his symptoms are gone (hence why he is approaching some kind of maintanence treatment). His latest MRI was improved over last.

We have a physican in Ct. and my husband's experience is not uncommon in his practice, and of course there are many stories of profound improvement on CPn Help.
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Postby viper498 » Wed Nov 28, 2007 8:22 pm

Bob,

thanks For Your comments. I mean Its not all about me, I know that, but I can't help but to reflect on the comments here. Maybe I'm Just being ungrateful. I'll be quiet now. Thanks again Mr. "2006" posts!!!
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Postby jimmylegs » Wed Nov 28, 2007 8:46 pm

notably, this thread is not in the abx forum area, might get more positive replies over that way?

i was listening to a nice CBC radio show on biomedicine, on the way home from school tonight - a guest from mcgill university talking about how it's wrong for medicine to pigeonhole patients as much as they do - yes maybe a body is a body when it comes to broken bones and such, but all the studies and statistics try to make everything fit one picture when there is more than a checklist of diagnostics and symptoms to consider in a patient's experience of life. they talked about how a patient's narrative changes from what they know of themselves, to what they know is the expected information and what will not be well received or asked about. it was quite a good listen. all by way of saying, v, that everyone's an individual with this, even though we're all in 'it' together. you gotta find what works for you, and maybe what you plan will be the best answer for you!
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Postby Lyon » Wed Nov 28, 2007 8:51 pm

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Postby Terry » Thu Nov 29, 2007 6:28 am

viper,
I posted this question in hopes that everyone on abx would say "yes I'm better" and there would be, for me, an absolute answer. It didn't happen that way. I keep coming back to .... a gene predisposes us, and then some missing info, then a virus or bacteria takes hold. Various ones. So what works for one, then, will not work for all. It seems to me that abx treatment has worked for many. You very well could be one of them.
And, Viper, it IS all about you. And it is all about me. And the next guy and the next. Every time someone tries something, every time someone gets better, or worse, or thinks they've figured something out, or gives up on an idea, or gets a new idea, it IS all about them, and it send waves through this community. I didn't realize that with my "progressive" disease I would enter a world of "progressive" learning, but here we are. ( I babble)
Keep doing what you're doing.
Terry
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Postby viper498 » Thu Nov 29, 2007 7:24 am

Thanks to all of you for your support. I really didn't mean to hijack this thread.

Terry, I think you are right. I mean we all have a vested interest in the efficacy of minocycline, or for that matter any compound or treatment that works. We are investing time in to "testing" the drug and at least I need the anecdotal evidence to have some symbolence of confidence. If that makes any sense?
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Postby robbie » Thu Nov 29, 2007 8:06 am

Don't even consider my minocycline experience(as i'm sure you all don't), i didn't even take it long enough to be official. theres lots of folks out there that think it's helped, so just keep on it and hopefully you become one of those people.
We always say what works for some dosen't work for others, i hope this is true and not just in our heads.
Had ms for over 19 years now.
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Postby gwa » Thu Nov 29, 2007 8:24 am

Another thing to consider is that the abx therapy is not just one drug. You have to take all three in order to get the benefit of the regimen.

So, if you have not started the 2nd drug, don't get too discouraged. I have taken the first two for several months and am going to start the Flagyl pulses as soon as my company leaves. I don't want to risk getting sick from the Flagyl when I have to cook, clean and entertain for another week.

I am going to try this for a year and if I still see no difference in my health I will stop the drugs. It is difficult staying neutral on the abx, but that is what I am trying to do because there apparently are people on it that do well.

It is probably more difficult for robbie and me to notice any differences because we have had MS for a long time and are in worse shape than a lot of those that are trying the abx successfully.

gwa
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Postby cheerleader » Thu Nov 29, 2007 9:57 am

What works? THe question is, what works for you, Terry? Many wise folks have suggested....Look under every rock.

We just consulted with a Lyme literate doc, and got hubby's Igenex report back. Looks like a "qualified" positive for Lyme (+++ on only two bands, doesn't qualify for CDC or Igenex, which needs three positive bands, but this shows a footprint of bacteria.)

The doc recommends three months of IV antibiotics. We have to take it all in. My husband is doing really well on Copaxone, supplements, exercise and new diet. We're a bit scared about throwing something new (and potentially harmful) into the mix, and upsetting his balance. The positive bands mean he has the antibodies to bartonella...his immune system may have already conquered Lyme disease. Or not.

Yes, it's all very confusing. Even for the docs. I'd suggest trying what you can, seeing what works, tossing what doesn't, and keeping that ever-positive spirit. There's no one cure...but many paths.

all the best,
AC
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