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Posted 1/23/2021 2:10 PM (GMT -5)
I started Horowtiz's double dapsone protocol a few days ago. My LLMD was pretty insistent that I added LDN into the regimen. So now I'm on 1.5mg a day. I've taken up to 3mg a day of LDN a few years back for approx 4-5 months. Don't remember it doing much. It's going to be tough to say what is working or what is causing side effects while on this protocol since I'm taking so much but I hope LDN helps.
Posted 1/23/2021 2:40 PM (GMT -5)
i too have begun ldn

started 1.5 mg a month+ back...i found a definite decrease in inflammation on day 2 or 3...i have mcas and/or autoimmune issues that have made treating so diffucult, but i did feel overall improvements

after a month went to 3mg and hell broke lose...rapid heart beat, MASSIVE insomnia (2 nights in a row with zero sleep), heart palps for first time ever, jerking of limbs while not sleeping in bed...after 5 days, I pulled the plug and contacted my well known CT llmd who prescribed it...he said that for those it works for they do have major flares (YUP), and ill restart at 1.5 when new prescription comes in..unfortunately my compunded pills were for 3mg, so i couldnt step up more slowly...he said if i am able to stabilize on 1.5 for a month, next time he will prescribe 2mg for a slower step up...im ok with that! but i am hopeful this might work some overall
Posted 1/23/2021 2:49 PM (GMT -5)

dbwilco said...
i too have begun ldn

started 1.5 mg a month+ back...i found a definite decrease in inflammation on day 2 or 3...i have mcas and/or autoimmune issues that have made treating so diffucult, but i did feel overall improvements

after a month went to 3mg and hell broke lose...rapid heart beat, MASSIVE insomnia (2 nights in a row with zero sleep), heart palps for first time ever, jerking of limbs while not sleeping in bed...after 5 days, I pulled the plug and contacted my well known CT llmd who prescribed it...he said that for those it works for they do have major flares (YUP), and ill restart at 1.5 when new prescription comes in..unfortunately my compunded pills were for 3mg, so i couldnt step up more slowly...he said if i am able to stabilize on 1.5 for a month, next time he will prescribe 2mg for a slower step up...im ok with that! but i am hopeful this might work some overall

Curious who the well-known LLMD in CT is? I go to Dr K, and I dont think he uses it. I'm guessing SP? Just curious what other well known ones are in CT.

You may not even need to go up that much, for some people less is more w/ this stuff it sounds like?
Posted 1/23/2021 2:52 PM (GMT -5)
yup SP in Wilton
idk if i will go above 1.5mg again to be honest
Posted 1/23/2021 3:20 PM (GMT -5)

1000Daisies said...


As for NAD, I did it twice in December timeframe. After the first one, I got a boost of energy but did not help my mood. After the second one, I can't say I noticed anything beneficial, and after that, I got many "sick" symptoms for about 4 weeks (not COVID). I am doing my third one this Friday.

As for enzymes, I'm taking Dr. Wong's Zymessence 2pills 2x/day before meals. But it doesn't have as many different type of enzymes as I would like, so I started taking 1-3 pills of BioFase enzymes at bedtime. I am "new" to both of these products, as a prior enzyme product that I used previously has since been discontinued.

No, I would not. But greatly improved, like a major breakthrough (for me, at least). Like I punched a hole in the wall but the wall is still there... but maybe the wall will start to come tumbling down. I feel like that is what is happening to me now, as I go through so many symptoms all at once, which is highly odd for me. Despite feeling "better", my sleep has sporadically getting worse again (sleep is a relatively new issue for me for at least the past year+), and presently, I'm starting to get some spots of pain. But my motivation, which I greatly struggled with, has greatly improved.
Plus, I have been dealing with chronic fatigue for so long (several years) that, quite frankly, I don't even know what "normal" is for me at this point, as I've also aged several years, as well. I just want to feel like a human. And for the first time in many years, I really have started to feel like the "old me" (whatever I think that may be?) and human again. In fact, I have been working on several projects around the house that I have been wanting to do for years but just could not do it... and I'm getting through them! I haven't been this productive for this many days in a row... in, seriously, I can't remember when!

Nic, I admire your perseverance and persistence through all of this. It is so difficult to keep going after we have had so many treatments not work for us.

Great news on the NAD. I just got the transdermal NAD patches. Have read great things about them, seems like it gets very depleted in a lot of people with chronic illness. Dr Matt Cook desribed it well, pointing out how its responsible for over 200 different biochemical pathways, and there's often just not enough to go around. I saw someone in the methyl support group say that NAD helped their slow COMT issue, and they were suddenly able to tolerate methylfolate since it sped up their COMT cycle.

Post Edited (dcd2103) : 1/23/2021 1:28:24 PM (GMT-7)

Posted 1/23/2021 4:13 PM (GMT -5)

dbwilco said...
yup SP in Wilton
idk if i will go above 1.5mg again to be honest

He sounds like a great LLMD.
I’ve watched some videos of him with Dana and he’s very knowledgeable and appears to be nice (if that’s important to you)

He would be my second pick - if he did treat patients from out of the US
Posted 1/31/2021 1:20 PM (GMT -5)
not really due to do an update yet as still on 2.5mg - but came across this info and thought I would post it in case its of interest to those following this topic

the LDN research trust website seems to have a surprising number of articles and videos by clinicians prescribing LDN for Lyme disease -

https://ldnresearchtrust.org/search-condition?field_type_of_video_target_id=484
Posted 4/7/2021 4:42 AM (GMT -5)
brief update - i am still taking the LDN and have gradually been increasing the dose in very small increments as i seem very sensitive to it now that i am in the effective dose range.

i do think i am getting benefits though - as my exercise tolerance continues to improve.
-walking pace and distance still improving gradually
-the number of tasks i can do in a day has gone up a little too - average around 16 now
-the biggest change is how much weights type exercises i can do - with the reps are continuing to increase almost every week i am doing around 4 times the size of workout that i was able to do when i started around last august - my body feels overall stronger and better for it.
-i also find myself doing chores till late in the evening - when previously after dinner i was good for nothing except sitting
-mornings are still tricky rough / slow - but this has been a feature of my illness since the start.

current dose is very near 3mg / day still taken in the morning - but am only incrementing it by around 1/10th of a milligram to avoid weeks where my sleep is very bad - as this impacts my overall health adversely.

it is certainly a long haul - but i think there is enough there in terms of benefits to keep going - and still aim to get to 4.5mg or thereabouts over time.

i do not belive LDN can be effective for me on its own though - more a supporting therapy for auto-immune issues - so i continue to progress with the comprehensive Buhner Lyme protocol - with an extended lyme protocol from his 2nd edition lyme book - as well as co-infection herbs for Bart etc

i have recently added methylene blue to the regime for bartonella - as even with the above protocol progress is still very slow - but then i may well have had these infections for many years before i finally became chronically ill - and so it may well take a long time to turn it around

i will perhaps start a separate thread on that.
Posted 4/7/2021 9:13 AM (GMT -5)
Good to hear, Garzie. I am off it. For some reason my tinnitus is much louder on it. I thought it had helped with my energy and back pain but I am still the same off it. Back pain is SO much better from doing SI joint exercises. Maybe it did help rebalance stuff while I was on it.
Posted 4/9/2021 8:05 AM (GMT -5)
I'm on 2 mg I'm thinking of just staying there. I took 4.5 mg last year and I think it was doing more harm then good. At 2 mg the most noticeable thing is I sleep much better. Which is a huge deal. I buy the tablets and dissolve in distilled water. Initially I had a prescription but I think I prefer the water with dissolved tablet and its much cheaper. Easier to increase the dose too.
Posted 4/9/2021 9:30 AM (GMT -5)

skinny_joe said...
I'm on 2 mg I'm thinking of just staying there. I took 4.5 mg last year and I think it was doing more harm then good. At 2 mg the most noticeable thing is I sleep much better. Which is a huge deal. I buy the tablets and dissolve in distilled water. Initially I had a prescription but I think I prefer the water with dissolved tablet and its much cheaper. Easier to increase the dose too.

yep - i dissolve mine in a 25% alcohol and water solution - that way any biological action is prevented and it keeps - i then dose that with a 1ml graduated syringe - so i can increase the dose in any increment i like - and keep everything very accurate and consistent - which i important as i react to even small changes in dose.

from what i have read some stay at whatever dose seems to work for them - anywhere from about 2mg to 4.5mg per day - and there are case reports of people going up to as high as 16 or 18mg and getting good results
for me i think the benefit is increasing with dosage - but not if i go too fast - so i think its just about increasing at a rate your body can adapt to and get more of the benefits without too much downsides - and we are all likely very different in that respect.

people with CFS like symptoms and Hashimoto's in particular typically have to go slow

i have both and get such a flare in symptoms from adding only 0.25mg i cant imagine what would happen if i were to try full 4.5mg dose right now
Posted 4/9/2021 9:37 AM (GMT -5)

1000Daisies said...
I'm still on LDN, around 1.5mg. This year, I have had moments where I have not feel this good in as long as I remember (many, many years). Having said that, I have also been much, much worse than prior years. It's been a really strange roller coaster this year so far. Hopeful and discouraging.

My doctor said I should feel better with energy after a few months with the LDN. It's been several months at this point. A friend recently told me that it would take longer than that. IDK...

daisies - if it helps i just checked my chart and i started at 0.5mg in October last year -so nearly 6 months and i dont think i could have ramped up any quicker than i have without a major roller coaster effect - so in some people it does stake a long time to get to target dose and even longer to get the full benefits.

as mentioned above some groups are known to take a long time to ramp up - over 6 months - Lyme is one of them

if your roller coaster effects seem to coincide with the dose changes or shortly after i wonder if the steps are too large - if i step the dose by even 0.25mg i get sleepless nights and fatigue and overall body pain
Posted 4/9/2021 7:45 PM (GMT -5)
Never thought of adding the alcohol to the LDN mixture. I take the 50mg pill and dissolve it in 50ml distilled water. Then fill a bottle that has a 1ml dropper with the mixture. It lasts me about 22- 23 days at 2mg per day. I waste some on the initial mix so I dont get all the filler in the bottle. I refrigerate it.
Posted 4/10/2021 5:14 AM (GMT -5)

skinny_joe said...
Never thought of adding the alcohol to the LDN mixture. I take the 50mg pill and dissolve it in 50ml distilled water. Then fill a bottle that has a 1ml dropper with the mixture. It lasts me about 22- 23 days at 2mg per day. I waste some on the initial mix so I dont get all the filler in the bottle. I refrigerate it.

yep - that will work - i couldn't find any information around possible biological breakdown of LDN - so added the alcohol as a precaution only.
Posted 4/28/2021 5:35 AM (GMT -5)
i have not heard anything about LDN and COVID.

however it would make sense to me that it is likely to help - as severe COVID and long Covid both appear to have significant immune dysregulation at their root - and are treated with immune suppressing steroids - eg dexamethasone and immune modulators - hydroxyquinoline and ivermectin

LDN is also used to treat immune dysregulation - particularly auto-immune diseases - and so may well have some beneficial effects
Posted 4/28/2021 5:39 AM (GMT -5)
i am currently at around 3mg a day taken in the mornings

i am stepping up very gradually indeed - as i found once over around 2.5mg a day i am very sensitive to increased of even 0.25mg - which would trigger several restless nights - and possibly worsened sleep for a week or more

however if i step the dosage by 0.01mg every other day i can gradually increase the dose over time.

I'm taking this approach as i notice my physical performance went up as i increased the dose - even though my sleep was impacted - so benefits appear to be linked to increased dose and i think its worthwhile aiming for around the typical target dose - in my case - so 4.5mg
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