its a very unusual medication Astro

ramp up is critical and starting dose should be v low with people with lyme and auto-immune diseases as reactions can be very strong - so treatment has to be individualised with every patient

the gradual ramp up that is often needed makes using a compounding pharmacy very difficult and expensive - as they can only produce broad steps in dose

i would self medicate with it using a solution and syringe

will find a post links to my previous LDN posts for more specifics

Low Dose Naltrexone – LDN – and Lyme / Bart
I have been using it to modulate my immune system as part of my overall treatment for bart and lyme. What i wanted to pass on is that LDN is not a normal medication. ie not something you just take at x dose per day and that's that done. It’s actually a very unusual drug and people with chronic illness can react extremely strongly to it, even at tiny doses. I had to start extremely low dose - 0.5mg and work up in 0.01mg steps per day ( yes 1/100th of a milligram per step) or i would have severe pain all over. however, it definitely helped me with my most limiting symptom - fatigue and i can now do 3x more than i could before.

But i still hear accounts all the time of "my Dr started me at 2mg per day and i felt awful" - or - "i took 1.5mg a day for 6months and it did nothing for me".
Even many LLMDs do not understand this drug or how carefully it has to be tailored to the individual patient’s response. the LDN research trust states that those people who have adverse reactions in the beginning are often the ones who benefit most in the long term - but that those with chronic fatiguing illness - like lyme, CFS, Fibromyalgia and autoimmune disease like Hashimotos may have to go very slowly and ramp up over many months or even years - this has been the case for me.

you could try that

but many people in the lyme community or auto-immune community are super sensitive - and once you get in the range where you start to feel effects you may need to step in 0.1mg steps or as in my case even 0.01mg steps or you get odd symptoms like pain all over - disturbed sleep etc ( these are what i had )

its a very unusual drug - its interacting with the bodies opioid receptors - which in turn interact with the immune system - and this is thought to be the reason for the unusual - but also its ultimately beneficial effects
( the people that react the strongest initially are usually those that get the most benefits later - you just have to navigate the in between with a very individualised dose regime)

that's why i usually advise people to try the liquid and syringe approach as
1, its much more adjustable - you can step as often as you like and in any increment
2, its much cheaper

"...........that's why i usually advise people to try the liquid and syringe approach as
1, its much more adjustable - you can step as often as you like and in any increment
2, its much cheaper .."

But jeeez......self injections.

I did self injections of an anti-clotting drug 2x daily for two weeks, shooting into what little gut/abb fat I have. I hated doing that. I could never self-inject into a vein.

yep - Blazer is correct - its not injected - just dosed accurately using a graduated syringe as an easy way to titrate up the dose

i mixed a 50mg tablet ( standard available at international pharmacies etc ) in 50ml of water - and then you can dose it accurately as 1ml = 1mg -

a 1ml syringe allows for very fine graduations

Aren’t there any compounding pharmacies in your location??

1)Girlie- there is one comp pharma near me. I will stop and ask questions.

2)loski- did that place ask for a prescription ??

(I remember you had a long post on LDN a few years ago here. )

3)Blazer - I had no idea you can make low dose naltrexone out of regular dose 50mg naltrexone which regular phamas have in stock all the time in the USA (which is an FDA-approved opioid antagonist used to treat alcohol use disorder and opioid dependence -(news to me also).

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Im surprised there is not a website that explains all of this or shows how to make specific doses.

I dont remember reading details about LDN here before. Its like most here who used it learned somewhere else but only ask specific questions about it here.?

thanks all so far

any more info is certainly appreciated

Dr. Google says : “It is believed that LDN works in the brain by reducing pro-inflammatory chemicals called cytokines, which are known to inflame and sensitize various tissues that can cause pain.

By down regulating inflammation in the nervous system, it reduces pain, improves fatigue, sleep, and mood as well as physical function.Sep 15, 2023”

If it actually does that last sentence, that would be a dream.

So I am first trying to improve my health baseline a little closer back to where it was just to see if that helps.
-Liver, gallbladder, flush
-Increased thyroid med just a little which will take time to work
-Interested in seeing if they used to help my sleep which went off a month ago

Then I will try LDN acknowledging that I will have to adjust my thyroid medicine with that again anyway. Adjusting thyroid medicine sucks because that means a month or months of discomfort.

I very much appreciate the alternative methods of using LDN in this post. It’s good to know that I actually don’t have to have a doctor to do this.

However, I am going to go with the LDN from the local pharmacy my new functional doctor prescribes. But maybe I can talk her into using a lower dose.

This is what she prescribes :
1)-Compounded 3 mg splittable tablets

2)-Start with half which is 1.5 mg for a few weeks, see how well tolerated.

3)-If tolerating, then use full 3 mg tablet for a few more weeks. If OK then:

4)-1 1/2 tablets which is 4.5 mg end dose.


My thoughts on starting dose:
If I split those tablets into quarters with a pill splitter, that would end up .75 mg.

I just called the compounding pharmacy she uses and they also can make 1 mg pills that have the split line down the middle.

(If I go with above plan, and that’s still too harsh, then I will try what I call the water down syringe method explain to me a few posts above. Does that even have a correct term for it?)

Post Edited (astroman) : 2/9/2024 9:07:24 AM (GMT-8)

Garzie I forgot to ask, since I seem to remember you take both T4 and T3 of all synthetic versions of thyroid medicine, correct?

What did you have to do to your thyroid dose throughout your whole LDN experience (starting, increasing, and final achieved level of LDN).?

My thyroid is very touchy just a little off dose with my pig thyroid med, and I can feel it, so this is the part of LDN that freaks me out.

Thanks again

hi Astro

yep i take T3 and T4

a bit of context - i originally just took T4 as prescribed by my GP - and found no noticeable benefit - i titrated up until my T4 went near top of range but T3 was still low / bottom of range - big surprise eh?

so i added T3 and titrated that up till my free T3 was in upper 1/3 of the normal range - still not sure if i have any benefit ( i think infections are driving the majority of my symptoms rather than the thyroid - as looking back at my records i found i had a TSH of around 11 when i was still mountain biking in the hills for 4 hrs and driving 4hrs there and 4hrs back - so clearly it was off for a while but not holding me back much).

i mention this as i didn't need to adjust my thyroid meds at all during LDN ramp up

my free T3 might be fractionally higher now than before - as i had always tyrugged to get that up to the upper 1/3rd of normal range - where the thyroid experts say is usually best - but its usually up there now - so maybe that was an effect - but my overall health has moved forward in that time so its hard to say if that's just better conversion due to better general health / less inflammation - or if its was due to LDN - either way its marginal

i know various places say it will cure autoimmunity and so your thyroid meds will need to be reduced dramatically - but that's not what i found

i did have to go very slowly with the LDN ramp up - took me almost a year to get to full dose - so maybe that was a factor

OK ?

I will ask Here because i dont want to open a new thread all the time, but can LDN cause orthostatic intolerance?

Even since I have stopped i get elevated Diastolic readings or Low systolic readings.

Can Look Like 120/90, 105/80. Etc.

I didnt really get it before and my Heart Failure Marker is within range.

Still really confusing and concerned regarding a new Symptom popping Up that wont subside