Re: Experience with Tysbari with or without LDN?

[Guest guest]

What has been the experience with Tysbari? I have had MS for 30 years, and am now for the first time, considering taking meds. I have RRMS. Things are getting worse, never really recovering. Can walk about .5 miles with difficulty, typing is a correction exercise, running is out of the question. Take breathstopping tumbles almost daily. Dr. Tim Vartanian, of Judith Jaffe MS center in NYC thinks this might be a good one for me, saying that i should try it for a year. If it is ineffective, I would stop taking it; if it is as effective for me as it has been for some, I may well decide it is worth the 1/1000 pml risk.I have been on LDN for four months now, and am very pleased, but am afraid to continue without meds. I also do the MS Recovery diet, to good effect, but I continue to have significant trouble. Thanks for your responses,Keep on keeping on,ReginaOn Feb 3, 2011, at 5:17 PM, Baker wrote:I am. 5HTP controlled my fibromyalgia for almost 10 years, but then I had a huge health crash due to unremitting stress (economic crash and my partner got laid off) and it was no longer enough. I have now been on LDN for 13 months, and during that period stopped taking 5HTP because of money issues. Not a good choice. I have discovered through experimentation that I definitely need to continue my 5HTP for best results.The iodine protocol has also been of large importance in my recovery.iodine/I accidentally went off LDN over the holidays (kept forgetting), and the IBS symptoms came back. Previous to that, I ran out of iodine for a long period and my energy and brain clarity deteriorated. So through experimentation, I have determined that it's the full package for me. But as many people say, LDN is seldom a standalone treatment. But, LDN can create enough health that other treatments can then work.-->good day folks>>anybody on 5-HTP with ldn, request feedback, comment +/->>thanks peter~~~ There is no way to peace; peace is the way ~~~~--A.J. Muste Regina A. SchroederJDSearchlight364 West 117th 5ANew York, NY 10026212.665.5937(t)212.665.5940(f)regina@...

[Guest guest]

But if you are pleased with LDN why would you want to go down the Tysabri route?

Just because that's what your doctor recommends? (And what are his reasons?) LDN

has a better success rate than Tysabri, I believe. (70-90% versus 67%?) And

definitely a better safety record. And are you having relapses? I thought

Tysabri might reduce relapses but doesn't influence the descent into disability?

Thank goodness for LDN and for not having been pushed into making decisions

about DMDs or not.

Good luck

Silvia (PPMS, 25 months on LDN)

>

> > I am. 5HTP controlled my fibromyalgia for almost 10 years, but then

> > I had

> > a huge health crash due to unremitting stress (economic crash and my

> > partner got laid off) and it was no longer enough. I have now been

> > on LDN

> > for 13 months, and during that period stopped taking 5HTP because of

> > money

> > issues. Not a good choice. I have discovered through experimentation

> > that

> > I definitely need to continue my 5HTP for best results.

> >

> > The iodine protocol has also been of large importance in my recovery.

> > iodine/

> >

> > I accidentally went off LDN over the holidays (kept forgetting), and

> > the

> > IBS symptoms came back. Previous to that, I ran out of iodine for a

> > long

> > period and my energy and brain clarity deteriorated. So through

> > experimentation, I have determined that it's the full package for

> > me. But

> > as many people say, LDN is seldom a standalone treatment. But, LDN can

> > create enough health that other treatments can then work.

> >

> > --

> >

> > >good day folks

> > >

> > >anybody on 5-HTP with ldn, request feedback, comment +/-

> > >

> > >thanks peter

> >

> > ~~~ There is no way to peace; peace is the way ~~~~

> > --A.J. Muste

> >

> >

> >

>

> Regina A. Schroeder

> JDSearchlight

> 364 West 117th 5A

> New York, NY 10026

> 212.665.5937(t)

> 212.665.5940(f)

> regina@...

>

[Guest guest]

Besides 4-AP, LDN is the only prescription medication I take for my MS and have

been doing so since March 2005.

Did you know Tysabri can cause a fatal brain infection in some people?

Art

My MS/LDN story/1988 - 2011

http://ldn.proboards.com/index.cgi?board=personal & action=display & thread=867

--

>

> > I am. 5HTP controlled my fibromyalgia for almost 10 years, but then

> > I had

> > a huge health crash due to unremitting stress (economic crash and my

> > partner got laid off) and it was no longer enough. I have now been

> > on LDN

> > for 13 months, and during that period stopped taking 5HTP because of

> > money

> > issues. Not a good choice. I have discovered through experimentation

> > that

> > I definitely need to continue my 5HTP for best results.

> >

> > The iodine protocol has also been of large importance in my recovery.

> > iodine/

> >

> > I accidentally went off LDN over the holidays (kept forgetting), and

> > the

> > IBS symptoms came back. Previous to that, I ran out of iodine for a

> > long

> > period and my energy and brain clarity deteriorated. So through

> > experimentation, I have determined that it's the full package for

> > me. But

> > as many people say, LDN is seldom a standalone treatment. But, LDN can

> > create enough health that other treatments can then work.

> >

> > --

> >

> > >good day folks

> > >

> > >anybody on 5-HTP with ldn, request feedback, comment +/-

> > >

> > >thanks peter

> >

> > ~~~ There is no way to peace; peace is the way ~~~~

> > --A.J. Muste

> >

> >

> >

>

> Regina A. Schroeder

> JDSearchlight

> 364 West 117th 5A

> New York, NY 10026

> 212.665.5937(t)

> 212.665.5940(f)

> regina@...

>

[Guest guest]

I know. My doc says that most people who have gotten it got it after a year, and that I should try it for a year. I may find it so helpful that I decide it's worth the risk. He quoted me 1/1000, I would argue that statistic with him if I can get a good study. My plan is to get a baseline MRI, stay on LDN only for a year, then another MRI, then reassess. I am hoping to make so much improvement in 6 months that he changes his mind about the efficacy of diet and LDN. But I will start blubbering if I take Tysabri and find that I can run again. Drama queen, I know. l have a very good life even with MS, but 40 years down the line is not looking so good. And a lot of people are carrying the load with me, especially financially. I am also influenced by this account:http://www.ksl.com/?nid=148 & sid=6725533Thanks you so much for your input. One person told me that they were on Tysabri for a year, had great improvement and went off of it, and onto LDN, and continued to keep the improvement. The are reassured to feel that if things get bad again, they can go on Tysabri again. Thanks for your input, I am very touched by the loving fellowship of this group.Good luck to all!We are doing it!ReginaOn Feb 4, 2011, at 10:45 AM, art_ldn wrote:Besides 4-AP, LDN is the only prescription medication I take for my MS and have been doing so since March 2005.Did you know Tysabri can cause a fatal brain infection in some people?ArtMy MS/LDN story/1988 - 2011http://ldn.proboards.com/index.cgi?board=personal & action=display & thread=867--> > > I am. 5HTP controlled my fibromyalgia for almost 10 years, but then > > I had> > a huge health crash due to unremitting stress (economic crash and my> > partner got laid off) and it was no longer enough. I have now been > > on LDN> > for 13 months, and during that period stopped taking 5HTP because of > > money> > issues. Not a good choice. I have discovered through experimentation > > that> > I definitely need to continue my 5HTP for best results.> >> > The iodine protocol has also been of large importance in my recovery.> > iodine/> >> > I accidentally went off LDN over the holidays (kept forgetting), and > > the> > IBS symptoms came back. Previous to that, I ran out of iodine for a > > long> > period and my energy and brain clarity deteriorated. So through> > experimentation, I have determined that it's the full package for > > me. But> > as many people say, LDN is seldom a standalone treatment. But, LDN can> > create enough health that other treatments can then work.> >> > --> >> > >good day folks> > >> > >anybody on 5-HTP with ldn, request feedback, comment +/-> > >> > >thanks peter> >> > ~~~ There is no way to peace; peace is the way ~~~~> > --A.J. Muste> >> >> > > > Regina A. Schroeder> JDSearchlight> 364 West 117th 5A> New York, NY 10026> 212.665.5937(t)> 212.665.5940(f)> regina@...> Regina A. SchroederJDSearchlight364 West 117th 5ANew York, NY 10026212.665.5937(t)212.665.5940(f)regina@...