LDN Herx

Bumping again in hopes that Resurrection will see this and give us an update.

Curious to know. When you were herding did you continue to remain on LDN and increase your dose or did you take a break and then start at a low dose and slowly increase to 4.5?

My new Doc, who treated me for Covid, wants to help with my CIRS. He said he has treated mold patients before and he is recommending LDN for me. I’m currently using ultrabinder, NAC, fish oil, olive leaf, PC, Vit C&D, and a probiotic. Has anyone had experience with LDN for mold toxicity?

Sounds like herx , this happened to me when I started herbals. Also I used doxy for hears on and off for a few days and no herx. Once I used doxy and clinda for more than a week at a time, the real screwed up reactions started to occur. Like shooting pains I never had in every joint in my body, bedridden for about 2 months, crazy brain symptoms (brain fog, disoriented, panic attacks, neuralgia in my head or brain especially. This lasted 2 months after stopping abx. My llmd says this sounds like a really bad case of methylation issues and that if ai was able to detox it probably wouldn't feel as bad

Post Edited (MedicalNerd) : 9/3/2022 11:07:28 AM (GMT-7)

i could definitely imagine quite alarming symptoms from ramping up too fast in anyone who is v ill - or v sensitive
i am only moderately sensitive to most medications and herbs and - as above - i had quite alarming symptoms at one point during the ramp up phase - pain all over - shooting pains pains migrating all over my body every few seconds - and had to stop the ramp or ramp by only a ridiculously tiny amount each few days ( 0.01mg steps - when target dose is around 4.5mg - so steps are around 1/500th of full dose)

if it can do this to someone who is only moderately sensitive - then i can certainly see it being overwhelming if ramped too fast in someone who is sensitive

one of the issues with LDN is many doctors treat it like any other medication - and clearly it is not that
instead to be used effectively in persons who have complex conditions or are v sensitive - it needs to be tailored to them very carefully - the ramp up may need to be 10x slower in these cases

but i rarely read about doctors doing this

instead i read accounts of - "My MD put me on 1.5mg / day and it did nothing / gave me terrible headaches / caused me terrible nightmares"

this doesn't mean these people cannot use it or benefit from it f they do - it just means they need to change the way they use it and the way they think about reaching "target dose"

there used to be quite a lot of information on LDN dosing and possible side effects and worsening of symptoms of the LDN research trust website - esp in conditions like CFS/ Fibromyalgia/ MS/ Lyme Hashimotos etc a quick search just now shows this


Hashimotos thyroiditis patients may require
closer titration and testing of T3/T4 levels every
4-8 weeks during initiation phase.
CFS/ME patients often experience flu like
symptoms and may need slower titration. If
exacerbation of symptoms, decrease dose until
able to tolerate titrate accordingly. MS patients
often experience worsening of MS symptoms in
the first 8 weeks. This is normal and is often a
sign of good long-term response.
LYME patients on multiple antibiotics and
DMARD agents should seek careful advice
from and work with experienced providers and
pharmacists before initiating LDN.
https://www.ncbi.nlm.nih.gov/pmc/articles/
PMC6313374/

their guidance now also includes information on ultra low dose LDN treatment ( doses up to 1000x lower than normal LDN) so this is a clear indication that even low doses of this drug can have strong effects

Garzie said...
i could definitely imagine quite alarming symptoms from ramping up too fast in anyone who is v ill - or v sensitive
i am only moderately sensitive to most medications and herbs and - as above - i had quite alarming symptoms at one point during the ramp up phase - pain all over - shooting pains pains migrating all over my body every few seconds - and had to stop the ramp or ramp by only a ridiculously tiny amount each few days ( 0.01mg steps - when target dose is around 4.5mg - so steps are around 1/500th of full dose)

if it can do this to someone who is only moderately sensitive - then i can certainly see it being overwhelming if ramped too fast in someone who is sensitive

one of the issues with LDN is many doctors treat it like any other medication - and clearly it is not that
instead to be used effectively in persons who have complex conditions or are v sensitive - it needs to be tailored to them very carefully - the ramp up may need to be 10x slower in these cases

but i rarely read about doctors doing this

instead i read accounts of - "My MD put me on 1.5mg / day and it did nothing / gave me terrible headaches / caused me terrible nightmares"

this doesn't mean these people cannot use it or benefit from it f they do - it just means they need to change the way they use it and the way they think about reaching "target dose"

there used to be quite a lot of information on LDN dosing and possible side effects and worsening of symptoms of the LDN research trust website - esp in conditions like CFS/ Fibromyalgia/ MS/ Lyme Hashimotos etc a quick search just now shows this


Hashimotos thyroiditis patients may require
closer titration and testing of T3/T4 levels every
4-8 weeks during initiation phase.
CFS/ME patients often experience flu like
symptoms and may need slower titration. If
exacerbation of symptoms, decrease dose until
able to tolerate titrate accordingly. MS patients
often experience worsening of MS symptoms in
the first 8 weeks. This is normal and is often a
sign of good long-term response.
LYME patients on multiple antibiotics and
DMARD agents should seek careful advice
from and work with experienced providers and
pharmacists before initiating LDN.
https://www.ncbi.nlm.nih.gov/pmc/articles/
PMC6313374/

their guidance now also includes information on ultra low dose LDN treatment ( doses up to 1000x lower than normal LDN) so this is a clear indication that even low doses of this drug can have strong effects

Nobody get offended of me laughing 😃 The things that makes me smile is I thought I was exaggerating and people thought I was exaggerating when I would say even 2 salt grains of an herb or abx would make me full of herx terribly. I'm highly sensitive even to amino acids and herbals, abx everything. Just smile and know you're not alone. My llmd thought I was a little nuts and even gave me a stunned look and said "well that shouldn't happen to you off of such a minimal amount because other people can tolerate half of dose or a quarter. I couldn't even make it to a quarter. I read other posts , and I smile and laugh because all along I wasn't alone and others on here are also sensitive to almost 1 drop or 2 grains of salt amount as ai said lol. Everyone is different but like some I'm one of the unlucky ones that can't tolerate small amounts or at all. I have 1 copy of THE MTHFR gene mutation and my llmd says abx and herbs shouldn't make me feel like that because I have the less serious type of gene defect rather than 2 copies or any other serious methyl pathway gene defects. They don't know how we feel though only we know how our own bodies can handle it.

Garzie I have a few questions about making a melatonin solution (I bought 10 grams of pure powder, enough to last me exactly 3333 days or 9.13 years if I were to take it every night at 3 mg per dose haha). In my defense it was on sale 😂

Anyway, I was wondering, if I make a thread about it will you be able to offer some advice? I don't really know how to make the solution but it sounds similar to LDN, as it's supposed to be water soluble. Thanks!