Has anyone suffered a long term relapse from being on LDN?

[anniekim]

Hi all,

I am thinking of trying LDN. Reading through the threads, I can see that it doesn't help everyone, others can get temporary bad effects and some it helps.

I was wondering whether anyone feels not only did LDN not agree with them whilst on it, but that it caused a long term relapse? I am just trying to gather a range of experiences before deciding whether it's a drug i would like to try.

Many thanks in advance.

 

[leaves]

i had a big relapse which i have blamed on LDN, however with hindsight I think it was the immunovir that has caused it.

 

[*GG*]

I started LDN during a Major flare up and have just continued to get better. I have been on LDN for over 1.5 years and nearing 2 years.

GG

 

[anniekim]

Thanks for the replies, much appreciated

 

[leaves]

this response is biased: there have also been people with bad experiences, look at the (long) LDN thread in this forum.

 

[Lynn]

Hi all,

I am thinking of trying LDN. Reading through the threads, I can see that it doesn't help everyone, others can get temporary bad effects and some it helps.

I was wondering whether anyone feels not only did LDN not agree with them whilst on it, but that it caused a long term relapse? I am just trying to gather a range of experiences before deciding whether it's a drug i would like to try.

Many thanks in advance.

Hi Anniekim,

Yes, I blame LDN for a long term relapse in symptoms. I was very tenacous and kept trying it over again in a nine month period. I thought I could break through the negative syptoms. I finally had to give up and still have not bounced back to my pre-LDN level of energy.

I tested positive for XMRV soon after giving up LDN. My theory is that LDN kick-started my immune system which then went to battle against XMRV. But of course who really knows. There are others on the forum who are XMRV+ but do well on LDN.

I personally wish I had not tried it. If you do try it, go very slowly.

Lynn

 

[Ninni]

Im also considering trying LDN. But Im a little hesitant, since Im already severely affected by ME/cfs (wheelchair bound and 90-95% bedbound, dependent on a carer), and even a very small decline in energy and strength would make me totally bedridden.

Lynn, Im wondering what kind of negative symptoms did you experience from LDN? How severely affected were you before trying LDN? I really hope the relapse you experienced on LDN will subside and you will get back to your pre-LDN level soon!

 

[Min]

it made me very ill but the adverse effects ceased a few days after I stopped taking it.