Doubt!

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Doubt!

Postby robbie » Sat Dec 01, 2007 11:22 am

Are any of the thousands of members that may be on one of the conventional treatments ever wonder if maybe they should try one of these alternative therepies such as ldn or antibiotics ect. After all you may get better results taking a pill than poking yourself with a needle for years on end. What do you think? I know the only way to find out is to try them but it must be hard for those who are locked up in a crab treatment or whatever to see the results of others who you wonder, could it be? could a drug that has been around for ever and as common as a pencil exceed the scientists and the money and the 100+ years of research! I know the answer you will all have is what works for one doesn't for others but i am just talking about the thoughts of people who are trying to decide.

When i think about the crab i took for 8 years when i could have tried other stuff and perhaps i would have been better then i am now, going back to what they say about starting early before the ms gets to bad. Doubting your decisions is so hard. I took the road i was suppose to!
[img][img]http://i24.photobucket.com/albums/c28/DaveJustin/ForkInTheRoad.jpg[/img][/img]
Had ms for over 19 years now.
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Postby Loobie » Sat Dec 01, 2007 12:31 pm

Like all of us, you made the best decision you could at the time with the facts available to you. I have thoughts like that all the time. They can drive you nuts. I chose Tovaxin over LDN and the other stuff because what I read supported that at the time I had a decision to make. In a few years after looking back, maybe I'll say "why didn't I do that one?". But there is simply no way of knowing and we all know how clear hindsight is.

My biggie is would I be having relapses right now if I wouldn't have gone off of Avonex? Who the hell knows, but what I do know is that shit was causing me so many quality of life issues that I had to stop. I have a guy that sells steel to me that has had MS for 8 years. He has been on Avonex since day one and has NEVER had a relapse. Part of me says he has that CIS, or one time deal. But another part wants to say that is just works for him where it didn't with me. He takes his in the morning on a work day! I could never have done that and went to work. Every time I took one of those shots I shook like a dog shittin' a razorblade. It's like you stated, what works for some, may not for others and that's where, in my opinion, the doubt comes in. You hear about someone's success and imagine if your course could have been the same.

I was ready to go on Tysabri right before I got the chance to get in the Tovaxin trial. If you read that thread, there are some who have had remarkable results. Others not so much. I have a guy at work who claims his wife had MS for twenty years and is cured now. He says they gave her wheelchair away and everything. He says it just went away. My first thought is that she didn't have MS, she had something else, but who the hell knows. I think all of this is just the dynamic of having a disease that we know so much about, yet so little in terms of putting that knowledge into a working therapy. All I hope is that someone gets lucky and stumbles onto it while I'm still treatable. Until then, I guess we have to risk getting our hopes up on someone's theories and research hypotheses.
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Re: Doubt!

Postby Lyon » Sat Dec 01, 2007 4:04 pm

robbie wrote:Are any of the thousands of members that may be on one of the conventional treatments ever wonder if maybe they should try one of these alternative therapies such as ldn or antibiotics etc. After all you may get better results taking a pill than poking yourself with a needle for years on end.
Hi Rob,
That very angst has been shared by those with MS and its researchers since the very beginning and is the very reason for the invention of the clinical trial process and the peer review process. Both specifically due to MS, if I'm not mistaken.

Not to take anything away from alternative treatments because they might well really work, but it's the age old situation in which, without having gone through the clinical trial process, they are allowed to make claims which they can't prove but also can't be disproven.

The situation is just a washout. If it doesn't seem harmful and doesn't cost a lot, it's probably worth a try if it's something of interest.

In MS it seems the only obvious scams are the ones in which the people making the claims are the ones who stand to profit from it. I don't see how anyone we come in contact with stands to get rich off of abx or ldn, which means they either know something we don't or are they are misguided (but honest) souls.

I guess the point is that if everyone on this site who tries ldn or abx lived through it and slowed or stopped disease progression, a clinical trial wouldn't be necessary. Obviously, that hasn't been the case.

Bob
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Postby MattB » Sat Dec 01, 2007 6:07 pm

I haven't started my treatment but the way it sounds is that MS is so unpredictable that you'll always wonder what-if whenever you take any different treatment.

It's funny that you mention minocycline though. About a month after my spinal tap I was still feeling crappy and got put on mino for an unrelated reason. After about a week on it I felt great and took it for about another month. Since I went off of it though I haven't felt any better or any worse than I did when I was on it. But right now I feel fine and I'm going to start preventative treatment soon that may make me feel worse. I just don't know what to make of things.
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Re: Doubt!

Postby CureOrBust » Sat Dec 01, 2007 8:33 pm

Lyon wrote:In MS it seems the only obvious scams are the ones in which the people making the claims are the ones who stand to profit from it. I don't see how anyone we come in contact with stands to get rich off of abx or ldn, which means they either know something we don't or are they misguided (but honest) souls.
I do NOT want to imply anything in respect to anyone. However, the kudos and notoriety (publicly and within their profession, which in itself can bring financial gains) could be the driver for someone to expound a treatment to the edge of their belief. When i have tried alternative treatments, its funny that it was Aimspro people that took out any personal time to try and investigate why it didn't work for me; i.e. why their system failed.
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Postby TwistedHelix » Sun Dec 02, 2007 6:45 am

A favourite saying of one of my old work colleagues was, " no one EVER makes a bad decision". His rationale was that every choice you make is the best possible one at that time, based on your knowledge, experience, feelings, instinct, advice, circumstances, and whatever information is available to you. In the future it may turn out that, with hindsight, you would have been better making a different choice, but at the time it was the best you could do and you shouldn't beat yourself up about it.
That's what I like about this forum: people share their experiences and ideas without ramming it down anybody's throats and claiming to have found " the" cure. We are free to make our own choices and discover what suits us, and will find understanding and support here without anybody saying, " you shouldn't be doing that: do this".
Having said that, trying to predict what will be the right thing to do is difficult, and I long for the day when somebody can say, " You have MS. Take this, and you'll be fine".
Dom
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Postby Lyon » Sun Dec 02, 2007 1:48 pm

Hi Dom,
Considering the poor choices that someone with MS has available to them, it's kind of hard to fault them for making the "wrong" bad choice!
Bob
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Postby TwistedHelix » Mon Dec 03, 2007 7:40 am

Exactly!
Dom
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Postby Chris55 » Mon Dec 03, 2007 9:07 am

How ironic...my daughter did just that--stepped out of the box and tried something different with astounding, amazingly positive results--and we both got pulverized on this site, even being accused of being scammers who were only out to make money!

Her MS has completely stopped (and this according to the MS specialist she sees in Atlanta.) MRIs don't lie!
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Postby viper498 » Mon Dec 03, 2007 9:53 am

Chris,

I can't believe that you were pulverized on this site! Everyone here is usually very open minded and accepting.

Another thing to note though, is that while I am more than happy for your daughters progress and hope she continues to do very well, an MRI doesn't prove a whole lot. The only proof is time its self in my opinion. Time will tell whether a treatment is completely effective or not.
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Postby Chris55 » Mon Dec 03, 2007 10:08 am

The MRI was used by her doctor to determine her MS had completely stopped--no new lesions, no active lesions and old lesions shrinking.

Would I ever use the word "cured? Not in this lifetime.

And yes, the commenters on this site were downright nasty--even using the "F" word (something I find unacceptable--guess I am just too old!)
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Postby robbie » Mon Dec 03, 2007 10:34 am

Her MS has completely stopped

Does it ever completely stop, like Viper and i have always said only time.
Had ms for over 19 years now.
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Postby Chris55 » Mon Dec 03, 2007 11:21 am

Robbie, I can only tell you what her MS specialist told her in February. "Your MS has completely stopped. This happens in about 5% of the cases and we have no idea why. I will no longer be writing you any MS prescriptions."

She does continue on her supplements. She does continue to see her MS doc on an annual basis now. She continues to thrive. Do I believe she will ever be "well"--probably not. But at least for now, what she is doing IS working for her and it has been over 2 years.

I also don't think the MS meds were helping her. If I were diagnosed today, I would try everything I could as long as it did no harm and didn't break the bank. I would start with the "unconventionals", LDN, diet, supplements, etc. I would even bay at the moon every 4th Thursday. I don't see what any of you have to lose. JMO...
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Postby robbie » Mon Dec 03, 2007 1:22 pm

Chris i think stopped is just another word for remission or maybe she has had an CIS or maybe it's not ms at all, what ever the case shes doing good and thats all that matters.
It's so hard for a parent to accept that their child has this, my father died while i was still working so he didn't see me get to bad and that was a good thing.
MS as i'm sure you know is a chronic progressive disease and will always be there, it just may not be showing itself for now. I too in the early days had MRI's that showed no activity, but like my neuro said it's just one picture in a long movie with thousands and thousands of pictures.
Had ms for over 19 years now.
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Postby Lyon » Mon Dec 03, 2007 2:06 pm

Chris55 wrote:I would even bay at the moon every 4th Thursday. I don't see what any of you have to lose. JMO...
Hi Chris,
I think everyone here would agree with you and would be out there baying at the moon with you IF there were legitimate documentation of the likelihood of and degree of benefit.

Earlier in this thread it seemed that the question also involved there being so many alternative treatments and how would a person could possibly determine which one, if any, would be of benefit. MS progression can be the most important issue in a person's life and MS progression is a time sensitive issue.

You are convinced that what your daughter is doing is helping her. Someone else is convinced that LDN made a huge difference in their case and the abx people are convinced of the benefit in their treatment. I've heard there is a guy around here who is so whacked out that he thinks swallowing parasites is a sensible option.

Considering all the alternative treatments and all those testimonials from equally intelligent and honest sounding people, how should an unfamiliar person pick just one to entrust their well being? With it in mind that progression of disability is a time sensitive issue and making the "wrong" choice could cost dearly.
Chris55 wrote:Would I ever use the word "cured? Not in this lifetime.
I don't blame you! I've never been able to find out exactly what cure means. As far as I'm concerned "they" can take the words "cure" and "disease" and stick them where the sun don't shine because they mean everything and nothing at the same time.
Bob
My boy Noah Webster wrote:CURE: 1 a: spiritual charge : care b: pastoral charge of a parish2 a: recovery or relief from a disease b: something (as a drug or treatment) that cures a disease c: a course or period of treatment <take the cure for alcoholism> d: spa 13: a complete or permanent solution or remedy <seeking a cure for unemployment>4: a process or method of curing
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