Everyone should read this link...

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

No argument here

Postby mormiles » Tue Oct 17, 2006 1:10 pm

Harry Z, I couldn't agree more. Your "IF" criteria have served us well on our journey and should be basic guidelines for any searching MSer or caregiver. "Eyes wide open" I say...ask the hard questions. Develp the skill of critical thinking.

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Postby Lyon » Tue Oct 17, 2006 2:56 pm

Last edited by Lyon on Sat May 07, 2011 10:31 am, edited 2 times in total.
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Postby HarryZ » Tue Oct 17, 2006 5:00 pm


Chris55 wrote:HarryZ--I started reading about Biogen/Antegren when my daugther was first diagnosed. I never saw so many red flags in my life!

I'm glad that you saw the same color of flags that I saw about Tysabri. But good marketing and sales usually overcomes science (in the short term) and Biogen is very good at that. Biogen has convinced a lot of MS patients that it's the best medication ever created to treat this disease and that if you pay your $ $ 4000.00 a month per infusion, all your problems will go away.

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The Road to Hana

Postby notasperfectasyou » Tue Oct 17, 2006 9:01 pm

I don't know much about Tysabri, except that it focuses on a similar concept as the Interferons, meaning strengthening the BBB. But, I really have not researched this like I have other stuff, so don't hold me to it.

It you've ever spent half the day driving to Hana, you know. Research is a journey. We can't expect an end on demand, and we can't expect each milestone to be the end either. we get excited about milestones, like Tysabri and we might hope that they are the end, but the journey is longer than that.

I still believe there is a cure and it's coming, just not exactly right now today. But I believe it's soon. I'm positive because I really don't like the alternative and I like having my half glass of water. My analytical side says that research and research tools have grown at an accelerated pace, like microchips. Technology, accelerates everything. The research folks have learned more in the last 5 years as was learned in the prior 20 before that. Technology Accelerators, I believe it's coming.

Just keep driving the car and don't smash into oncoming traffic. We will get there. napay
It would be really nice to be able to put links in here

If I have included a bad link, google the word "Scholar", click link for "Google Scholar". Search for the name of the paper and author in Google Scholar.
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Postby Jaded » Wed Oct 18, 2006 4:15 am

Nick, your post was disappointing, untimely and off topic. We are talking about cures, as Chris has said. It's way too late for prevention for us here.

Rita, I appreciate how you feel, but if you had MS half way through your life, what future could you look forward to? A future filled with uncertainty makes for great suffering.

I love the fact that there are many opnions on this site - and many knowledgeable people. It gives me a strange comfort.

I sway from optimism, on good days, to total pessimism and depression on bad days. I'd bet that is fairly typical.

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oh come on nick

Postby jimmylegs » Wed Oct 18, 2006 4:38 am

u know there are lots of ppl in the nutrition camp on this site, and last time i checked no-one made it illegal to complain about drug companies!!! we can't all be sunshine and buttercups all the time now can we. now if you'll all excuse me i have to go blow soap bubbles while skipping naked through a meadow filled with wildflowers. you know, just so i can get all possible vitamin d from the experience 8)
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Postby Chris55 » Wed Oct 18, 2006 9:57 am

Oh god, Jimmylegs--can you hear me bellowing with laughter!!!! Can I run through the fields with you? If nothing else, at my age of 57, we would give lots of folks a huge laugh!

Now--back to "serious" me! (Actually, I normally have a GREAT sense of humor--just seem to lose it when discussing MS.)

One final problem I have with current MS research...I am not convinced this is an autoimmune disease (just too generic a term). Do not believe the body is attacking itself for no reason.

Would that there would be some diversity in the research in considering something else--bacteria? virus? Yes, I know, I know. They've researched that--dead end. Kinda' like the stomach ulcer--caused from stress for what? 50 years? Now we discover it was a bacteria after all! Amazing!

Peace ya'll!
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Postby Melody » Wed Oct 18, 2006 2:39 pm

Around here we subscribe to supplements( to many to list some are at the bottom), exercise,specific diet to John oh yeh copaxone just incase it works and then toss in tap on wood and cross your fingers. It sort of like circuit training we try it all. As to Vit D3 we take it in pill form but the running naked in the meadows doesn't sound bad since the Viagra is working. :lol: :lol: :lol: You might even be able to work in the bee sting therapy with all those wildflowers. :wink:
John was diagnosed Jan 2005. On lipitor 20mg .On Copaxone since July 4,2005. Vitamin D3 2000iu-4000iu (depending on sunshine months)June 10 2005(RX::Dr. O'Connor) Omega 3 as well Turmeric since April 2005. Q10 60mg. 1500mg liquid Glucosamine Nov 2005.
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Postby jimmylegs » Thu Oct 19, 2006 5:42 am

hehe glad u enjoyed that chris and woo hoo melody! good on ya!
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Postby Nick » Thu Oct 19, 2006 3:27 pm

raven wrote:I'm probably not the only one here who finds your post incredibly insulting.

I, for one, lump you in with all the other whackjobs who believe they have the 'answer'. Perhaps the reason you didn't get all of the reads and responses that you craved are that others share my opinion of you and your 'charity'


I’m sorry you feel that way Robin. I emphasize that my comments were chastising those who claim there are no altruistic endeavours in the research realm and that all current research has a profit motive, not because they don’t agree with me.

I concur with some of those cynical sentiments yet I consider our pursuit to be free of those motives. So why not recognize DIRECT-MS for that virtue? There’s nothing like a doff of the hat for the small guy.

Irrespective of what you feel I crave, our pursuit continues in relative anonymity.

mormiles wrote:Nick, I share your frustration with inattention to what works, but remember this please---this site is peopled by those who already have MS or their loved ones already have MS. It's a done deal. Like you, I find myself in a minority position, though not the same one. In fact, as you read the posts, you realize that most of the folks on this site have leanings on causes and treatments or are in a particular "camp" with regard to causes and treatments. Opinions, opinions, opinions...everybody has one. Airing our opinions and sharing information is what this site is about, so chill out. Don't hammer people who don't see things the way you do. If it's any comfort to you, I would venture to say that most of the users here know about the MS-Direct Best Bet Diet and have taken from it what they will, as have I as well.

Cypriane~caregiver and advocate for husband with SPMS (and improving)

Hi Cypriane. Indeed opinions are like A-holes, everybody has one. As I wrote above, I’m not criticizing those who don’t agree with my opinions. I do however take issue with the lament that there are no pursuits looking for a solution to MS that doesn’t involve a profit motive. There were a number of comments decrying the absence of independent, altruistic research initiatives yet I recently posted, with little acknowledgment, such an undertaking.

I alluded to prevention in my earlier post. I still feel that way and those same means of prevention can be used to ameliorate on-going MS. For those that haven’t bothered to read the research initiatives of our trial in Scotland, it involves people with diagnosed MS. The whole pursuit of that trial is to determine what affect a dietary regimen can have on active MS.

Anecdotally, after revising my diet accordingly I have arrested my progressive state of MS and improved some too yet I am still plagued with nerve damage and its consequent impairment. I feel this limited positive effect on me is due to the timing of my intervention. I was in very poor condition with longtime active disease activity when I arrested my disease progress. Consequently I had neurological symptoms arising from both nerve damage and inflammation. I attribute my improvements to the subsidence of inflammation.

Roger MacDougall induced remission with diet revision and then enjoyed the benefit of his body repairing itself, from what was most likely nerve inflammation rather than nerve damage, to full recovery despite his one time wheelchair status.

So what does one term the status of myself and Roger? Are we cured? I say I can control my disease progress or lack thereof, anxiously await some kind of stem cell implant to give me back full mobility and in the meantime use a Segway to complement my limping. As for Roger, I say he had a full recovery yet both he and I are still susceptible to the disease should we revert to our former causal diets (Roger died at a ripe old age a short time ago).

The same can be said of Matt Embry. He interceded early enough in his disease progress and all of his MS symptoms disappeared within 6 months. Most assuredly his youth contributed to his healing in the absence of causal food proteins. He has existed in excellent health for the last ten years but he devotedly adheres to his dietary regimen because he is still predisposed.

These scenarios lend new emphasis to the adage about everything in life being timing.

Hence the therapy I and many others employ can be used not only for disease prevention in susceptible individuals but also for intervention in people with active MS. The extent of inflammation vs nerve damage will largely govern a person’s degree of recovery to such a pursuit. Hopefully our trial results will also encounter similar results in the study group.

I would like to emphasize the use of adequate vitamin D supplementation. It is relevant to this discussion not only for preventative sake but for active therapy as well. The very essence of how this vitamin interrupts the disease process
so that it never becomes active is still applicable for those who are diagnosed.

One, the offspring of such individuals will benefit immensely of its benefit to ensure prevention and two, the limited data that existshere indicates it can have a positive benefit on active disease progress.

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Postby robbie » Thu Oct 19, 2006 4:35 pm

When i read posts like yours nick and other drug posts i sometimes wonder if i'm missing the boat but i'm think i am getting too tired to even think that way. I have tried alot of stuff with no results so i am glad for you and think that you have every right to share what works for you as do other people with therapies that work for them, i think you have to try what you can, doctor recommended or not to see if it helps. To actually try something and have it help you is really the only way to know. There is goggle sites right on the home page of this site claiming some really remarkable things so just (try it you might like it). When i first came to this site all the talk was ldn so i tried it but it wasn't for me so you move on, now i'm at a place where i just don't know anything but the way i feel every day. I'm sure their are quacks out there that have only one thing in mind and thats making money but thats our responsibility to know fiction from fact or to use some common sense at least .
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