What works

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What works

Postby Terry » Sun Nov 25, 2007 8:39 am

It seems to me that most of the people here who really believe they are getting better are taking antibiotics. Am I correct on this? Robbie, you started abx, right? I am waiting and hoping that you'll soon say you are improving. How are you?
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Postby jimmylegs » Sun Nov 25, 2007 9:41 am

hello,

i haven't gotten to the point of trying the abx or any pharmaceuticals yet, that's not saying i never will though. i have only been dx'd since early 2006 so it's too early to say categorically that i will never take any of those things.

since dx though, i have bent over backwards to fix things with nutrition and have had several pleasing successes.

overall, i am showing subjective sensory, bloodwork, and MRI improvements, and hope all will continue!

there was one brain lesion worse on MRI last visit. all others had apparently improved, or were just gone away altogether, or just don't show up now unless enhanced.

others here have reported back improvements in various symptoms, through supplementing.

on the flip side, it's not unheard of to encounter side effects from overdoing something in the long term. this has happened to me once, itching due to high folic acid in a new bottle of b-complex - and i don't think i'm the only one to experience the folic itch!
Last edited by jimmylegs on Sun Nov 25, 2007 6:22 pm, edited 1 time in total.
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Postby robbie » Sun Nov 25, 2007 10:36 am

No improvement here it'ts been three months now and i am going to stop. there is nothing anymore and i truly beleive that trying things is good and i think i have done my share. Ms will do as it pleases, you just have to hope your ms is mild and you end up with a disibilty that does not stop you from doing all the things you enjoy. It's hard to talk about therapies working when they are a year or two old, it can just be the ms. In the beginning ms can trick you into beleiving many things are helping but really it's just ms. So good luck with anything you try and maybe you will beat it, and if you are just hoping that you can slow it down until you get to that research miracle, well good luck there too. A little common sense with your trying will go a long way. I like to think that if there really was something out there it will be discovered in the medical community where they have the 2.5 million of us to base their findings. there is nothing wrong with wanting to be better and trying what ever you can but the bottom line to any of these drugs is time, will it matter over time so if i am still here i would love to here from many of you in 10 or 15 years. There is always talk of starting early in ms before there is to much damage and because i seem to be one of the more damaged maybe this is why nothing seems to help, and if i were newly diagnosed this is what i would think. Ah fuck that Rob he's to far gone i will try these things anyway.
Had ms for over 19 years now.
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Postby Loobie » Sun Nov 25, 2007 1:28 pm

Some salient points about MS being MS. My first five years I remember telling some friends that it was almost a blessing for me so I could clean up my act in terms of the way I'd been living (nothing crazy, just bad diet and lots of partying). Have I rued the day I spoke those words now. I think that's why this shit is so perplexing. There really is no way for you to know if a drug is working unless you see reversal of symptoms or marked improvement of one that has been there for a while. 2 weeks ago I had two fantastic days in a row. No dizziness for 48 hours. I was literally bursting with excitement. Thinking that it would be no problem to wait the 4 weeks or so it will take to "spin up" my Tovaxin.

Now I'm feeling very rough again and am in that camp you speak of where I'm hoping I don't get too nailed down between now and my first real injection. This disease progressed at a snails pace the first five years. That is the pisser. That's where all the research is focused, but a lot of us seem to have it easy for the first 5 or so. There is no way in hell that I could have been able to say whether anything was working or not at that time. The funny thing was that the only substance that could give any relief to the symptoms I did have at that time (bladder and eyes) was pot. Now that I'm getting weak legs and pissing myself on a fairly regular basis the pot has almost a reverse effect on my legs! It's just maddening. This disease is like the damn Davinci Code on crack. I tried to replicate everything I did the days leading up to the two really good days I had a couple weeks ago.

My bedtime, diet, level of exercise, even when I left work. Well needless to say I didn't find the "magic formula" of behavior and other inputs since I started to feel bad again. It's going to take somebody with a pretty complex understanding of homeostatic (is that a word?) interactions to unravel this mystery. It's like a cockroach. Every once in a while when you flip the lights on you catch a glimpse, but most of the time it just screws with you when you aren't looking.
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Postby jimmylegs » Sun Nov 25, 2007 2:24 pm

'davinci code on crack' that is awesome :D lol!
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Postby Terry » Sun Nov 25, 2007 5:41 pm

Hmm, not the answers I wanted to hear, but since there have been no answers I wanted to hear so far, I should have expected the same. I have changed my eating habits quite a bit and added a couple of supplements. Besides that, I guess for now I continue with the homeopathic route. At least no side effects there. Robbie, hang in there. I'm pulling for you! Loobie, you are just up the road from me. I'm in Cincinnati.
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Postby jimmylegs » Sun Nov 25, 2007 6:23 pm

hope you find some more encouraging answers soon T!
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Re: What works

Postby CureOrBust » Sun Nov 25, 2007 11:53 pm

Terry wrote:It seems to me that most of the people here who really believe they are getting better are taking antibiotics.
I did ABX's for over a year, I don't think it worked for me in particular, and have now stopped. But definitely am glad I tried. If anything in hindsight, I would of been more careful with the frlagyl.
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Postby gwa » Mon Nov 26, 2007 5:45 am

cob,

What are you referring to about the Flagyl?

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Postby Loobie » Mon Nov 26, 2007 6:11 am

Terry,

Two words:

WHO DEY.

They actually looked like a real football team yesterday!
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Postby Frank » Mon Nov 26, 2007 7:15 am

Hi Terry,

just to give you one more feedback of an ABX user:
If you want to read my whole ABX journey I have an own thread for it in the ABX forum.

During the first 4 month I felt significant improvements, but I'm affraid they might have mostly been due to seasonal variations.
Anyway, at least I didnt get worse while on ABX and I dont feel any sideeffects.

You might also want to have a look at statines, some people had a good outcome taking them...

All the best

--Frank
Treatment: Gilenya since 01/2011, CCSVI both IJV ballooned 09/2010, Tysabri stopped after 24 Infusions and positive JCV antibody test, after LDN, ABX Wheldon Regime for 1 year.
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Postby jimmylegs » Mon Nov 26, 2007 7:56 am

B3 is an alternative to statins too. my personal form of ms responded wonderfully to b-complex megadosing. in combination with many other things, but the big megadose effort was incredibly worth it for me.
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Postby viper498 » Mon Nov 26, 2007 11:20 am

Robbie,

Why are you going to stop taking Minocycline? I would like to urge you to stay the course at least for another 3 - 4 months. Is there any harm in this?

Brock
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Postby Terry » Mon Nov 26, 2007 2:48 pm

Loobie- it was a good day at Paul Brown Stadium, wasn't it? They ARE a real team- they just seem to forget that on occasion. :D
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Postby HUTTO » Mon Nov 26, 2007 4:40 pm

easy there terry and loob. my titans got whooped. i like chad johnson..i hope he leaves cinci and comes to tenn..hope you both had a good thanksgiving holiday.
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