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Joined: Jan 28, 2005 Posts: 1061 Location: Northern Ontario, Canada
Posted: Wed Dec 26, 2007 4:49 pm Post subject:
It will very interesting Lobbie to see how it makes you feel, like JP said you should notice immediate results. Please keep us informed! and thanks for all the info on it. _________________ Faith is taking the first step even when you don't see the whole staircase.
Jim--as many on this site already know, my daughter tried an alternative treatment (all natural for a strep bacteria infection) and she had the same results as you (this about 2 years ago.) She is still thriving and surviving and so enjoying her recovered health!
I wish you the VERY BEST with this endeavor and good for you for having the courage to step outside that proverbial box I do hate so! And you are doing it not only with your doc's knowledge but blessing.
I'll keep my fingers crossed for you and in my prayers for sure.
Joined: Sep 12, 2006 Posts: 2080 Location: Dayton, Ohio USA
Posted: Wed Dec 26, 2007 10:19 pm Post subject:
I will Robbie. I look forward through a skeptic's eyes with a hopeful heart. I almost feel like I'm grasping since it would be soooo published if these were typical results. I'm not doubting JP's situation. I am green with envy and hope I find in Tovaxin, or this, or whatever the hell I may try next, the results JP is having. I can't fault anybody for trying anything at this point, so I guess I'll spend the $29.99 that one container of this stuff costs and give it a try. I'll let you know. Keep your fingers crossed! Hell, I've wasted $30.00 before; and for a lot stupider reasons. If this stuff gives me some relief, I'll let the world know.
Robbie, check your inbox, I sent you a PM with the link
Lobbie - I hope it helps you as well. I'm still feeling good, but I hope it lasts.
I really hope the good effects last, cause I've already bought about 200 dollars worth of it stock piled in my kitchen!
I started out taking one scoop a day for a few days then started taking two scoops a day.
I mix it with orange juice because I believe it absorbs better when I mix it with that, as opposed to water. At least I felt better... could just be my imagination.
Hi Lew,
When I was younger, for a gigantic rush, my buddies and I would get stoned and lay in the tall weeds next to the railroad tracks and wait for a train to come.
All these years later I still can't think of anything more terrifying than laying there stoned out of my brain, seeing the light from the approaching train filtered less and less by the weeds, feeling the earth increasingly tremble and, realizing my state of stonedness, seriously questioning whether I'd had the intelligence not to actually lay on the tracks or too near the tracks.
At the height of panic, the overpowering urge was to get up and run, probably right into the path of the train. Luckily I always managed to listen to the voice of reason which said to stay the course and stay put, even though the panic made the voice of reason almost too faint to hear.
I don't know what the people at your trial office told you. You only said that you asked. Obviously its impossible for Opexa to have tested every possible substance to know which ones are going to cause negative interactions with the Tovaxin process. The people at the satellites know even less.
You've endured a year of what seemingly has been placebo to get to this point
Quote:
N-acetylglucosamine (GlcNAc), has been found to suppress the damaging autoimmune response observed in multiple sclerosis and type 1 diabetes mellitus.
and there is good reason to think this stuff is going to mask mrtc's.
Don't allow the height of panic cause you to run into the path of he train. You are in the final stretch, stay put and stay the course! At this point, anything else you do is likely to be wrong.
Joined: Jul 28, 2005 Posts: 1999 Location: Sydney, Australia
Posted: Thu Dec 27, 2007 6:57 pm Post subject:
lyon wrote:
You are in the final stretch, stay put and stay the course! At this point, anything else you do is likely to be wrong.
No one can say what is right or wrong. Hindsight may prove you to be wrong, but that wont be till after, possibly never (the proof that is).
You have experienced some very positive results from this substance, which would make it hard to resist. It is your choice and only you can make it.
From my limited understanding, if someone goes in for a tovaxin draw to find MRTC's and they are masked, they can always go back again. It seems you have found your own saving grace, and although there is little scientific backing, it would be hard to refute it to yourself.
I personally don't have much faith in the substance, and have lots of respect for Tovaxin. Hell, maybe this will be an opportunity for tovaxin to learn / extend their exclude list. Thanks to you.
Again, it is your choice, and only you should make the decision, as its your health (and brain). Not that I am trying to convince you to keep taking your NAG, but if it was me, I'd be waiting for Tovaxin to prove it works for me personally (and that I am not in the placebo arm) before I put my eggs into its basket.
Lew,
I think a couple of posts up I've made my best possible argument and I continue to stick with it.
Cure wrote:
You have experienced some very positive results from this substance, which would make it hard to resist. It is your choice and only you can make it.
As of this point in time Lew has mentioned buying NAG, but hasn't mentioned taking it or finding results either way.
Cure wrote:
From my limited understanding, if someone goes in for a tovaxin draw to find MRTC's and they are masked, they can always go back again.
Exactly the point, in an opposite kind of way.
Yes, Opexa earlier had isolated the necessary mrtc's from Lew's blood to make the vaccine and I imagine they assume they can isolate them again, if the registrant hasn't started using something in the meantime which masks mrtc's.
I have no way of knowing how many times Opexa would fruitlessly test someone, but lab tests are expensive and it can be assumed that they would quit trying at some point.
Cure wrote:
Hell, maybe this will be an opportunity for tovaxin to learn / extend their exclude list. Thanks to you.
LEW, if you really do value adding to the exclude list more than saving your own ass, I've badly misjudged you and I want to offer my sincere apologies!
Cure wrote:
but if it was me, I'd be waiting for Tovaxin to prove it works for me personally (and that I am not in the placebo arm) before I put my eggs into its basket.
That is exactly the point Cure......in an opposite sort of way.
For Lew the placebo arm is over and it's time for him to go on the "real thing" with certainty. Now, of all times, is not the time to fool with something which might mask mrtc's enough to allow continued disease progression, yet keep Opexa from being able to make the vaccine.
Quote:
N-acetylglucosamine (GlcNAc), has been found to suppress the damaging autoimmune response observed in multiple sclerosis
If the above statement is accurate, there is good reason to consider that GlcNAc might mask mrtc's to the point that Opexa can't isolate enough of them and make the vaccine.
In other words, like some of the other substances which mask mrtc's GlcNAc might eliminate enough mrtc's to keep Opexa from being able to make the vaccine, but not eliminate enough, or the appropriate mrtc's to end MS disease progression.
I think Lew might have it in mind that taking GlcNAc might be a harmless venture which could offer a little extra security, and it might well be. All I want Lew to consider is that starting an alleged "suppressing" agent at this point could be risky and I don't think he knowingly would accept that kind of risk at this point.
Joined: Sep 12, 2006 Posts: 2080 Location: Dayton, Ohio USA
Posted: Fri Dec 28, 2007 4:23 pm Post subject:
Thanks Cure and Bob for the feedback, and sorry JP for hijacking your post, I didn't mean to. I am firmly entrenched in the camp of Tovaxin. However, the landscape of my MS is degrading very rapidly. I'm scared to death. My physical abilities, in terms of staying ambulatory, are the thing that is decreasing the fastest. I had a week or so of stability about a month ago and was keeping my fingers crossed. Well everything showed up again and it's worse than ever. I've never felt close to this weak or fatigued and I am just so scared. I have to hold onto my wife when we are walking even short distances. I know everyone experiences this that has MS eventually. I just feel different since I'm 69 short days away from getting "real" Tovaxin.
I totally hear, and truthfully agree, with everything you are saying. I just need to do everything in my power to keep my job for two more quarters for my wife to get her RN. I know that everything will work out in terms of my financial situation since I have such a supportive family. By that I mean even if I had to stop working, I feel my family would carry the load until Brenda is done with school. I don't know, I'm so screwed up right now. My MS has hit me like a ton of bricks and I'm starting to think my neuro. was right about me being SP. I just haven't had much relief from progression for about a year. Bob, I will try and stay the course for the next two and a half months. That is what I want to do, and always has been. I just had no idea after my first, very mild, few years that MS could progress this fast. It's scary as hell and I want something to try if I don't think I can take the next 69 days.
On a positive note I did talk to Dr. Garces (the med. coordinator at Opexa) and he said it's no problem to take it. He was hip to NAG and did not give me any negative feedback at all about it. He didn't give me any positive feedback either, but since he knew about it I have to assume it doesn't mask MRTC's or he would have said something about it. To be truthful, a very large part of me feels like I'm buying some snake oil (no disrespect JP, like I said, I'm jealous of your results). If I stabilize a bit, I'm leaving it in the cabinet, but in the state I'm in, I'm ready for a mexican clinic .
Hi Lew,
Wow! That totally sucks and I can relate to where you're coming from. Worst case scenario.
(I deleted a paragraph from this space questioning whether Tovaxin would work on SPMS 12/29/07 @ 11:01 AM)
I normally don't go for people shitting themselves but at this point you need to cut the crap about NAG being snakeoil and totally convince yourself that it's the greatest thing since in house dirty movies. I've only heard good things about it and there is zero doubt that you will start noticing improvements almost immediately and for at least the next 69 days.
I know that sounds like a joke, but seriously cop the absolute, undying conviction that NAG is really going to work. In a couple of weeks I expect to hear you expressing doubts about whether it's really worth the effort to go in for the Tovaxin injection.
Stress is a bad thing and the holidays add to that. With utmost haste sign up for some yoga or meditation classes. Sauna, hot tub, whatever chills you out, do it a lot in the next 69 days.
Bob
Last edited by Lyon on Sat Dec 29, 2007 10:02 am; edited 1 time in total
I did a quick web search on N-acetylglucosamine, my take on it is that its another "no money to be made" situation like LDN, hence it will never get studied rigorously enough to determine if its beneficial in human MS.
I also notice the multi level marketing sugar company talking about it, not a good sign in my book.
Posted: Sat Dec 29, 2007 1:29 am Post subject: Topical changes
I think this thread started as one person's report on the effects on N. A. G. (or NAG or n-acetyl-glucosamine, etc) on him. At least that's why I tuned in. I think it's turned into a series of arguments on why one should only go with tovoxin and not risk or waste time on anythng else. My apologies if I am wrong, but that's my immediate impression.
I have more research to do to learn about Tovoxin, so it'll be slow going. I understand what it is supposed to be (like a vaccine), and what it's supposed to do (allow the body to control "bad" T-cells). I understand that it's supposed to be a twice a year thing -- so we go from a painful, expensive, weekly injection that may or may not be DOING anythng, to a marvelous 6-month injection that makes you pretty muich brand new (cynicism). Is it really viable? How hard is ti to find (in the states)? How much does it cost? The only pricing I've seen was pre-tovoxine as part of its PR -- "$16k-$25k". Is that per shot or per year or what? You've evidently got to maintain the regime (I guess "for ever"),
We turned down a suggestion to do Tysibri on top of Avonex. The Avonex was bad enough (was). The Avonex was $10k / year, I have no idea how much more the Tysibri would be...
If I lost our health care, then that would mean dropping Tovaxin. What happens if you "go off" tovaxin? Is there a rebound as with some other medicines?
So, we're back to NAG... does it help or doesn't it? Seeing as we don't even know what causes MS and the fact that different people respond to different therapies, there may not be a single answer -- and I don't think that people should give up on finding, trying, and using something that works (for them) just because you can't get a definite "yes" out of your neuro. We haven't gotten any "yes, this will work for you" out of anybody, just a "yes, you've got these spotty things on your brain and it's making you feel all of these rotten things." I'd rather keep trying different things that _might_ work (because they worked for someone else) and hoping we get lucky, than just giving up. I'd rather "waste" $100/ month on vitamines, nutrients, etc., looking for basic improved QoL than keep on w/ Avonex hoping that by getting painful shots, flu-like symptoms, and bills every week, it makes a difference.
I'm back to waiting to see if there's more info on NAG every day. How does it effect users... does it seem to help, etc And I'll find some to try, and I'll hope (and pray) that I'll see a big difference. And then it'll be D3 or whey or NAC or... you get the picture.
Posted: Sat Dec 29, 2007 3:39 am Post subject: Re: Topical changes
mvisconte wrote:
Is it really viable? How hard is ti to find (in the states)? How much does it cost? The only pricing I've seen was pre-tovoxine as part of its PR -- "$16k-$25k". Is that per shot or per year or what? You've evidently got to maintain the regime (I guess "for ever"),
We turned down a suggestion to do Tysibri on top of Avonex. The Avonex was bad enough (was). The Avonex was $10k / year, I have no idea how much more the Tysibri would be...
If I lost our health care, then that would mean dropping Tovaxin. What happens if you "go off" tovaxin? Is there a rebound as with some other medicines?
Tovaxin is not yet commercially available. That won't be until after Opexa has shown success with a Phase III trial, which by the way, hasn't even started yet. Right now, Tovaxin is in a Phase IIB trial. I have yet to hear any news regarding its projected cost. However, other posters here, such as Tim, AKA IHaveMS, may have some idea however vague it may or may not be at this stage of the game.
Hi NHE,
As it happens, the wife and kids are gone and I've been up all night reading old Tovaxin posts and remembered seeing this one (McWilliams is the President of Opexa)
Quote:
Cost per patient
While Tovaxin still has a long way to go through the drug-review process, McWilliams estimates the price to each patient would likely be "in the current range of therapies," between $16,000 and $23,000 a year. Insurance firms typically cover today's therapies.
Loobie, no need to be envyious. By the time I'm 69 I may be a goner. I'm only 28 and I have already experienced not being able to urinate, a bear hug in my stomach muscles that makes me want to lie around all day... not being able to walk down steps without my legs buckling, optic neuritis, which has left perminant damage in my eyes, sexual dysfunction ,etc, etc.
As the NAG is making me feel much better, I am still having days where I can't empty my bladder.
It worked wonders the first week, but now it seems like it's leveled off. Very similar to my experience with Solumedrol.
I'm going to keep taking it, because I can still walk much better and my MS hug is not so bad anymore, and I can still wiggle my big toe (these are good signs)
As far as the urination goes, I think my bladder may still be pretty confused. I was bummed out the other day with I felt the spasm once again in the bladder.
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I've lost track of this thread when it jumped pages from the original poster, and now its on lobbie
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