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LDN Stopped working?

crypt0cu1t

IG: @crypt0cu1t
Messages
599
Location
California
So, I started using LDN as recommended by Dr. Chheda. It actually improved my condition from 3/10 to a 6.5/10 for two weeks then quickly stopped working.

Is there any reason this would be? I actually thought I had a chance at recovering until it stopped working.
 

Moof

Senior Member
Messages
778
Location
UK
Only that ME bodies seem to be able to circumvent many things that help initially. There may be a vested interested in remaining in the ME state that we don't yet understand – i.e, it's protecting us, or our bodies think that it's protecting us, from something worse.
 

PatJ

Forum Support Assistant
Messages
5,288
Location
Canada
two weeks then quickly stopped working

Some people need to pulse the LDN. e.g. Take it one day, skip the next; or take it for one, skip two; or take it for two, skip one... I occasionally need to stop taking it for a few days then restart it to get the effectiveness back.

This page on Dudley's LDN site lists reasons why LDN may not work and might be relevant.
 

Wishful

Senior Member
Messages
5,750
Location
Alberta
It stopped working for me too, after a year or two of very effectively blocking muscle aches. I've experimented with larger and smaller doses, but haven't found any variation that provides an effect. As JES said, this 'works for a short time, then no longer has any effect' is common for ME/CFS. Something in our bodies seems to adjust for the treatments and prevents them from working. Several members (including me) have reported full remission from prednisone...for one or two trials, then it no longer has any effect. It's just part of ME/CFS. In 17 years, I've found two treatments (cumin and T2 or iodine) that continue to work reliably for me. I can offhand remember five that worked only briefly.

I wish that the things that make my symptoms worse had the same 'only has this effect for the first few times' response. ;)
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
So, I started using LDN as recommended by Dr. Chheda. It actually improved my condition from 3/10 to a 6.5/10 for two weeks then quickly stopped working.

Is there any reason this would be? I actually thought I had a chance at recovering until it stopped working.
Did she give you a schedule for slowly increasing the dose? It took me 4 months to get up to my effective dose.
 

percyval577

nucleus caudatus et al
Messages
1,302
Location
Ik waak up
It seems that the body thinks, this is how it must be. "It must not change" - and after some nice time you are again where you have been.

I would think that the state arises as a "normal homeostasis" which has become completly unnormal. (I prefer this interpretation over the defence interpretation of @Moof which is sensible as well.)

Funnily I had 15 months where beer with a lot of hops worked quite well (15 months!).
Did she give you a schedule for slowly increasing the dose? It took me 4 months to get up to my effective dose.
There is also the possibility to restrict something that works a) on the long run for avoiding any tolerance (in accordance to @PatJ , eg I sometimes needed to stop for one or two days drinking beer), or b) immediatly when it would induce to much change. I often want to carry on with a good effect but it get worse then.
(I don´t know much about LDN, these are more generel thoughts.)
 
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