LDN and Tovaxin

A board to discuss Tcelna as a treatment for Multiple Sclerosis

LDN and Tovaxin

Postby Loobie » Thu Oct 11, 2007 9:38 am

I am starting this thread to open up some dialogue about LDN. Almost everything I read about LDN that's positive makes mention of how it has improved the patient's bladder voiding. I also read in the LDN area that most of the people on it who are seeing results seem to see more improvement; i.e., not just halting progression but promoting repair.

Does anyone know if LDN is on the list of exclusion drugs for the Tovaxin trial? I'm so close to the extension portion of the trial I'm not going to screw with it, but if it's not on the excluded drugs list, I'm thinking of giving it a shot. The decline I have been seeing this year is still going strong and I just want a freakin' break and this seems to be the only thing I read about where people talk about significant improvement.

Any thoughts?
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Postby chrishasms » Thu Oct 11, 2007 12:51 pm

I use LDN and it was not on the list of not approved drugs. I'm sure it's anecdotally working on me :P

Actually if I don't take it I will start to shake so I can't believe it's not doing something good.

If your doctor will RX it for you cool! I had to print out a bunch of info about it and take it into my GP and he made the RX for me, not the Neuro.

Good Luck!
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Postby Loobie » Thu Oct 11, 2007 1:15 pm

Thanks for the feedback Chris. I think my neurologist will write the Rx for me, but I KNOW my GP will. He is cool as hell and really would support anything I wanted to do that I educated him about and wouldn't kill me! Thanks for that tidbit of info., it may prove very useful in my getting my hands on LDN.
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Postby Loriyas » Thu Oct 11, 2007 5:08 pm

Lew
Sometmes all you have to do is ask! Especially if you go to your appointment prepared with loads of information. I asked my neuro for the LDN and he wrote the Rx. He has some experience with it but I just said I wanted to try it. It has been about a month. I have been feeling really good-I don't know if it's the LDN, the minocycline, or something else but I guess it really doesn't matter in the long run! As long as something works! So just ask and maybe you shall receive!!!!

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Postby Loobie » Fri Oct 12, 2007 4:48 am

I will do that. I am 90% sure that my neurologist wouldn't balk. The only thing that makes me feel like he may, right now, is that I'm in the trial. Like Chris said though, if it's not on the list, he doesn't need to know and I'll use my GP for it. I have a great relationship with my GP. I got dx'd at about the same time he decided to get himelf healthy weight wise and we worked out at the same gym before I got my Bowflex and don't "gym it" anymore. He lost about 100 pounds and we have a tighter relationship than I have with any doctor I've ever had. He trusts me, and if I provide him the info., I'll know he'll do it.
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Loriyas

Postby Cojack » Wed Nov 19, 2008 11:50 am

I know this was posted quite awhile ago....very curious how it turned out for you taking both LDN & MINO...in crude parlance....i thought they regulated the imune system in opposite directions....

thanks,

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Postby notasperfectasyou » Wed Nov 19, 2008 1:02 pm

Loriyas wrote:I don't know if it's the LDN, the minocycline, or something else ....


I think you do. :)

Are we now giving up on Tovaxin and plugging alternatives? I'm not ready to give up, not completely at least. So, I'm not going to argue with Lori here, BUT, I am clueless about LDN and perhaps I should learn about it. Ken
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Postby Loriyas » Wed Nov 19, 2008 1:30 pm

Hi Ken
My post was from over a year ago so you are right, now I know. But I still continue with the LDN because who knows-maybe it helps too!
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an odd thing for me to ask

Postby notasperfectasyou » Wed Nov 19, 2008 3:41 pm

Lori,
You'd think I would pick up on a detail like that. Extreme Cuteness.

Would you have a recommended thing for me to read to learn a bit about LDN? What convinced you to try it?
Ken
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Postby Loriyas » Thu Nov 20, 2008 6:02 am

Ken
Try theses two sites:

www.ldn.proboards3.com

www.lowdosenaltrexone.org

I researched this quite a bit and decided that it was not going to do any harm and might even help so I wanted to give it a try.

Lori

PM me if you would like-we have "hijacked" this thread, I think!!!!
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Postby av8rgirl » Sat Nov 22, 2008 12:16 pm

As was posted on another thread, LDN is not approved if you are in the Tovaxin clinical trial. That is per OPEXA. The reason: it's not an FDA approved medication to treat MS symptoms and they will not approve it for anyone in the clinical trial. I asked more than once. The response was if you want to take LDN then you are out of the Tovaxin clinical trial, end of story.
“When everything seems to be going against you, remember that the airplane takes off against the wind, not with it.” - Henry Ford
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