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Problems with LDN-anyone have any advice?

Charles555nc

Senior Member
Messages
572
One woman posted yesterday on a site that her pain was so much worse on LDN. She received 20 lashing for saying such a thing. That to me is crazy.

My point was not to chastise you, and my god it seems like you've been through enough, it was just to suggest you take a break and try again sometime later. Take a month long break and try it once a week or something. It took me two years of trying to tolerate anti retrovirals (re the XMRV period), I finally made progress when I went on a 0 fat diet for 3 days before the medication. (Fat intake supports biofilms), after I tolerated the herx more, I went back to eating fat with no problems.

I hope you find something that works for you.
 

Misfit Toy

Senior Member
Messages
4,178
Location
USA
My point was not to chastise you, and my god it seems like you've been through enough, it was just to suggest you take a break and try again sometime later.

Thanks Charles. Do you think taking LDN once a week would do anything? I mean, for the better? It's only once a week. What would that accomplish, I wonder.
 

Misfit Toy

Senior Member
Messages
4,178
Location
USA
Have you ever had Nutreval testing done? That's what alerted me to my B6 deficiency, which was quite severe. Medicare paid for mine, it's pretty extensive testing.

Yes. I had spectra cell testing. And I am low and I'll be vitamins, or magnesium and B 12.

I know! I need to get on these. Thanks, Mary!
 

Charles555nc

Senior Member
Messages
572
Thanks Charles. Do you think taking LDN once a week would do anything? I mean, for the better? It's only once a week. What would that accomplish, I wonder.

Well I believe the side effects are a herxheimer reaction, because after being on LDN for several years, the last few months I noticed no reaction at all from taking it. Once a week is still progress in the long term. Maybe 6 months of once a week means that you are able to go up to twice a week. Slow progress is still progress.
 

TrixieStix

Senior Member
Messages
539
That was how I felt on .05 of LDN. Pretty small, no? That's. ULDN dose. So with a reaction like that, I am not so sure at this point.

One of the problems I am seeing with LDN fans is that many of them, not most...but many feel like those who can't tolerate it are WEAK and that is not fair. Like we should just push through even if we are feeling like we are dying.

One woman posted yesterday on a site that her pain was so much worse on LDN. She received 20 lashing for saying such a thing. That to me is crazy.
I posted I was prescribed Ultra Low Dose Naltrexone at 0.001 mg to be taken once daily. I was prescribed it by my doc at Open Medicine Clinic. I had a bad reaction to it within 12 hours after my very first dose and was instructed to stop taking it immediately. It caused me to feel as those I was being electrocuted down my back into my arms and legs. It was incredibly painful and scary. Too bad because it cost me $125 for the prescription as such a small dose has to be compounded. :(