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Anyone Feel Fatigue with LDN?

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Posted 7/14/2022 1:43 AM (GMT 0)
I’ve tried LDN before and had side effects. Seems like depression is one of them.

Have started again last two days in just 1.5 mg. a day. Felt okay yesterday but today at about 5:00 became so tired I couldn’t stay awake. Also more depressed.

Looked online and through archives here and did not see either mentioned as side effect. In fact, it shows it helping depression. LDN is the only thing I’ve changed.

My son is getting married this weekend with rehearsal dinner Friday and wedding Saturday. I can’t let him down on this as Lyme has caused enough of that.
Posted 7/14/2022 11:56 AM (GMT 0)
LDN is a very unusual drug / medication RW

the LDN research trust explains that the people wo are most likely to benefit from it are often the ones that react most strongly with adverse symptoms at first

it also states that people with chronic lyme - and or auto-immune disease - or - chronic fatigue - or thyroid issues - are often those that react most strongly and need to go more slowly in the ramp up phase

this was the case for me - it cased sleep problems and very odd all over fleeting pains that moved around constantly every few seconds - for me at even low doses - below what you are taking.

its defo not a one size fits all medication - and the ramp up phase in particular needs to be carefully individualised - any of the good LDN sources make this clear - but i see here an in other forums that many LLMDs seem to ignore this and just prescribe a set dose - treating it like any other medication - which it is not.

i have a tread on it on here - or i added my experiences to someone else's thread on it

i would start off lower and increase dose very very gradually - i had to go in increments of 0.01mg every few days to avoid the bizarre symptoms in the ramp up phase - but i do think its been one of the things that has helped with fatigue the most

i would also skip it entirely until you are past the event you need to get to as some adverse effects are expected during the ramp up phase - start it when you have a relatively stable and commitment free patch where you can monitor its effects more easily
Posted 7/18/2022 5:57 PM (GMT 0)
How did the wedding go running wild?
Posted 7/18/2022 6:10 PM (GMT 0)
in case its of use to anyone on LDN or taking break from it

as i mentioned i was super sensitive to this drug even in tiny doses of 1mg initially and had to ramp up very slowly due to adverse effects ( this is expected with Lyme)

I ran out recently - having messed up my stock control somewhat during the disruption of the house move

i ordered more as soon as i could but still had an 8 day gap between last dose of around 4.3mg and receiving new stock

i was pretty nervous about starting back on it after a break as i didnt know if i would be super sensitive again - and hoped it would not take 12 months to ramp up again - but didn't really know where to start

i decided to go in increments 1,2,3, 4 and 4.3mg and just stop of slow down if adverse effects kicked in

they didn't - i was able to get back to full dose in a few days

so i guess the useful bit of info it - if you have ramped up slowly over time and miss a week - it seems like whatever its doing to the immune system does not totally reset in a week or so and you can start back up again pretty quickly
Posted 7/18/2022 7:23 PM (GMT 0)
Rainy - Nice of you to ask. It went well. There were some challenges, personally because of my ex-wife. It's a Lyme story, which I won't get into. I did make a big mistake as I drank a few gluten fee, real low sugar seltzers and haven't drank alcohol for six years. Before six years ago, I hadn't drank for 9 years. It will be the last alcohol to ever go into my body.

But my son and daughter-in-law had a great weekend. I recruited her when I was a college coach not knowing I was recruiting a future wife for my son smile.

Garzie - I meant to respond to your thoughts from the 14th, but was covered with wedding. I took your advice and, after stopping LDN since Wednesday, started back yesterday with a lower does. I have so many 1.5 mgs left, I am just emptying to a certain point (half), so trying .75 mg. Today is second day, so we'll see if same happens on second day.

I'm glad you have not had side effects starting back and it seems to be not causing problems. My main purpose is for Sjogrens Syndrome. I read an old post a while back where someone was concerned it puts Lyme spirochetes into cyst form. I had never seen that before and cannot find anything else mentioning that.

But your point on those most likely to react to it are most likely to benefit was interesting, also.
Posted 7/18/2022 9:41 PM (GMT 0)
LDN interrupted my sleep throughout the night.

So I wasn’t too energetic during the day
Posted 7/19/2022 2:53 AM (GMT 0)
I saw an old post where you mentioned that. I take it in the morning because of the reaction I had to it at night a couple of years ago.
Posted 7/19/2022 12:40 PM (GMT 0)
yep - i also take mine in the morning

sleep effects were the first sign i was ramping up too quickly and ad to throttle back a bit
Posted 7/20/2022 2:52 AM (GMT 0)
Garzie - I had fatigue hit again late this afternoon. Not sure if it was from 3rd day on LDN or taking 3 drops of hotty.
Posted 7/20/2022 12:40 PM (GMT 0)
no way to know RW - i sympathise as much of my life for the last 6 years has been trying to figure out what does what
i would suggest starting only one thing at a time and waiting several days to allow any effects to surface before adding anything else

that's what i do now - it takes longer to get to where you thought you wanted to be at wrt doses - but i find far less unpredictable stuff happens - and i have a much better chance of figuring out wat does what - and hence actually move forward faster that endless loops of not knowing and having to back off everything
Posted 7/20/2022 4:34 PM (GMT 0)
After the wonderful effect LDN had on my symptoms, it suddenly stopped working and symptoms returned. I stopped and tried again after some time, lowest dose, couldn’t tolerate it. Was titrating very slowly too. Then tried ultra low dose naltrexone where I put 1 drop of LDN into a small syringe of water, quite diluted and take a small dose from that syringe. Reacted v strongly to that and ultimately stopped trying to get back on it. Sad my relationship with LDN is over. It helped the most.

I took it in the morning too. No issues
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