Relapses after stopping LDN...theories about this?

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Relapses after stopping LDN...theories about this?

Postby Anonymoose » Tue Aug 26, 2014 8:01 am

I recently stumbled across some info stating LDN improved cd8+ T cell count and boosts the immune system, helping to fight ebv etc. I didn't make it so far as to nail down a reliable source for this but started reading up on LDN at the .org site (because I'm now considering taking ldn as an adjunct to my anti-ebv campaign). I noticed it seems if you stop taking the drug, you quickly relapse. That worries me. My thoughts are that Ldn might make you feel better but while it does so, something is building in the background waiting to smack you when you let your guard down. (Very scientific, huh? :P )

Does anyone have any better ideas as to why the relapses occur so quickly when you stop taking ldn?
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Re: Relapses after stopping LDN...theories about this?

Postby NHE » Wed Aug 27, 2014 1:17 am

Anonymoose wrote:I recently stumbled across some info stating LDN improved cd8+ T cell count and boosts the immune system, helping to fight ebv etc. I didn't make it so far as to nail down a reliable source for this but started reading up on LDN at the .org site (because I'm now considering taking ldn as an adjunct to my anti-ebv campaign). I noticed it seems if you stop taking the drug, you quickly relapse. That worries me. My thoughts are that Ldn might make you feel better but while it does so, something is building in the background waiting to smack you when you let your guard down. (Very scientific, huh? :P )

Does anyone have any better ideas as to why the relapses occur so quickly when you stop taking ldn?


I don't know. Have you read SammyJo's book yet? It's been a while since I read it so I don't remember if it addresses the issue of increased relapse frequency after stopping LDN.

http://www.amazon.com/gp/product/078643 ... 0786437154
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Re: Relapses after stopping LDN...theories about this?

Postby Anonymoose » Wed Aug 27, 2014 7:21 am

Thanks NHE. I've not read her book yet and apparently have a lot more reading to do before I reach a decision on Ldn for myself. I'll check my library for it...with all the ms reading I do, can't afford to get into the habit of spending $32 per book!

Ruminating over this relapse thing with my usual healthy dose of speculation. Maybe if ebv does cause some forms of ms, the LDN works by blocking the harmful ms causing action of ebv but it doesn't stop viral replication. So when one stops taking ldn, there is a larger population of ebv infected cells and an even larger onslot of the newly freed ms causing factors. In the big picture, I guess that would just mean you need to take it forever and/or also attack ebv from other angles. If if if.

Off to read. :)
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Re: Relapses after stopping LDN...theories about this?

Postby NHE » Wed Aug 27, 2014 11:15 pm

Anonymoose wrote:Thanks NHE. I've not read her book yet and apparently have a lot more reading to do before I reach a decision on Ldn for myself. I'll check my library for it...with all the ms reading I do, can't afford to get into the habit of spending $32 per book!


My library didn't have it, but I was able to get it through their interlibrary loan program. Your library may have a similar program.
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Re: Relapses after stopping LDN...theories about this?

Postby Anonymoose » Thu Aug 28, 2014 5:32 am

Thanks again. :) I read up on ldn a lot more yesterday and my gut is telling me not to do it. So, I won't be needing that book after all.

Be well
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Re: Relapses after stopping LDN...theories about this?

Postby dlynn » Thu Aug 28, 2014 6:59 am

anonymoose,
http://www.ldnhilft.org/Originalfassung_000.htm
Is this what you were referring to? I don't know about the relapse rate after stopping ldn. Maybe it would just be the natural
course of the disease if one never took it at all. I do take ldn and I do plan on taking it for life. Hopefully it will
always be available. I wish you all the best with your decision.

dlynn
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Re: Relapses after stopping LDN...theories about this?

Postby Anonymoose » Thu Aug 28, 2014 7:22 am

Thanks, dlynn. My initial read was the lowdosenaltrexone.org site. Then yesterday I read more anecdotal stories and Ldn sites. As far as I know, I don't relapse very often (at least they aren't nearly as strong or long as my first few relapses). So, I tend to avoid anything that is associated with kick back relapses upon stopping (tysabri being a biggie). My gut might be wrong but I've got to listen to it.

I hope it does keep working for you and is always available at the current LOW! price. :)
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Re: Relapses after stopping LDN...theories about this?

Postby 1eye » Wed Sep 10, 2014 3:37 pm

If I ever had a relapse as strong as the one I had when I stopped taking LDN I would want to know why.

LDN had a very good effect on me but not for long enough to tell. Circumstances were out of my control.

I stopped taking it and had a bad relapse. I blame this entirely on the nocebo effect. It wasn't long enough to say anything about relapse.

I have, though, been virtually relapse-free for 4 years, after my CCSVI procedure. Some, but not many, of my symptoms are gone. I play piano better than ever, at times of day my hand hasn't stiffened up. I do this because, although I was once quite good, I can no longer play guitar. This happened before CCSVI.


I may have another procedure.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Re: Relapses after stopping LDN...theories about this?

Postby NormB » Fri Sep 12, 2014 2:17 pm

When a patient with MS takes LDN at proper dosage, very often the patient feels better which in turn creates a new baseline that sometimes get taken for granted. The new baseline should be called benefits. If one stops taking LDN for a few days the benefits disappear all at once thereby perceived as a relapse.
As with the disease everyone is different. In my case after 2 years taking LDN, it seems that I still feel new benefits similar to some of CCSVI along with stopping my MS progression being secondary progressive.
I as well had CCSVI performed by Dr Sclafini in 2010 and although the benefits from this intervention was many times better they lasted only for 4 months.
Another good book on LDN can be bought on Amazon ISBN 978-0-7864-3715-3 "The Promise of Low Dose Naltrexone Therapy"

Take Care All
'92 diag RR - '05 SP
On LDN since Sept. 2012 with better quality of life.
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