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Posted 9/4/2020 3:19 PM (GMT -5)
Has anyone taken more than 4mg of LDN? I am on 4 but some of my symptoms have returned and was advised to either bump up the dose to max 5mg or switch to bedtime dosing for maximum effectiveness ( I currently take it in the morning).
Posted 9/4/2020 3:23 PM (GMT -5)
I was on 2.5 but had to stop because I literally could not sleep on it. I felt agitated and would wake up feeling like I didn’t sleep

Do you notice side effects when you take inn the morning? What symptoms did it help?
Posted 9/4/2020 6:23 PM (GMT -5)
I tried it prior to my lyme diagnosis - thought it would help with some of my pain.
I took it in the evening and it made things worse for me.. I started to have pain during the night - when prior to it I could pretty much sleep through the night without waking with pain.

Edit: I started low dose and increased - I think to 6 mg
Posted 9/4/2020 7:45 PM (GMT -5)
4mg once a day was what I took a few years back. Never saw much results.
Posted 9/4/2020 8:07 PM (GMT -5)
Here’s the (rudimentary ) website on ldn that I got my info from.

https://www.lowdosenaltrexone.org/#what_dosage_and_frequency
Posted 9/5/2020 1:39 PM (GMT -5)
Wow 4mg is high for Lyme, how long have you been on it? I’ve been on 1.5mg for a year and it has helped me more than anything else.

When I increased to 3mg I had a huge symptom flare and couldn’t handle it, so I stay at 1.5mg. I take it at night.
Posted 9/5/2020 2:11 PM (GMT -5)
This is what I recorded in my lyme log

Naltrexone: LDN (1) 4mg capsule 1x/day. Started 10/18/18. Increased dosage to 4.5mg on Jan 2019. Ran out 8/12/19 and will not refill at this time.

I stopped since I noticed little to no return on investment.
Posted 9/6/2020 1:11 PM (GMT -5)
i was advised by my dr to take it at bedtime as that is when it is most effective. I've been on it since February. My symptoms had improved greatly initially but recently have returned and I am not sure why. My dr said the LDN is not supposed to lose its effectiveness. I just increased to 4.5, will go to 5 and if there is no improvement, I'll switch to bedtime dosing. I hope I don't get insomnia. My dr said it's ok to start at 4mg and to take it around 6pm and slowly increase the timing till it gets to bedtime.
Posted 9/12/2020 10:30 AM (GMT -5)
Have you tried skipping a day or two? Some people in the LDN Facebook groups do that, as it can help. I will skip a day or two every so often and then just go back to normal dosing, it’s like it resets things. Some people skip once a week.

Another thing to consider is maybe some biofilms busted open or something. I remind myself when symptoms “return” that it’s not necessarily me getting worse, maybe it’s just another layer of illness coming off. But then usually things improve after that.

Post Edited (orbitingaround) : 9/12/2020 9:33:37 AM (GMT-6)

Posted 9/28/2020 9:06 AM (GMT -5)
Orbitingaround: thanks for your advice. I skipped one dose and then resumed normal dosing the next day but unfortunately there was no improvement in my symptoms. I was hoping it would work and I’d be feeling better. Nothing sad

Should I try skipping two days? I’m unsure whether to increase my dose or skip two days.
Posted 9/28/2020 11:07 AM (GMT -5)
I took it for almost two years, I loved it but my prescription is going to run out next week. My LLDM started me on 4.5mg which did cause some side effects like feeling drink, extreme nausea and trouble sleeping but that only lasted a month or so. Good luck
Posted 9/28/2020 7:01 PM (GMT -5)

sunfun said...
Orbitingaround: thanks for your advice. I skipped one dose and then resumed normal dosing the next day but unfortunately there was no improvement in my symptoms. I was hoping it would work and I’d be feeling better. Nothing sad

Should I try skipping two days? I’m unsure whether to increase my dose or skip two days.

Yes you could try skipping 2 days, I’ve skipped up to 5 days when I was herxing bad and had to stop everything. Also try taking it before bed if you haven’t done that yet.
Posted 9/30/2020 12:08 PM (GMT -5)
Yes I take it around 8:30, slowly moving it to bedtime. I used to take it in the morning but my dr said to move it to bedtime as it is more effective at night. I'm going to skip 2 days and see how that goes. Crossing my fingers that it helps my symptoms because I am really suffering and desperate for relief. Wish me luck!
Posted 9/30/2020 12:24 PM (GMT -5)
Does it make you guys herx? I don’t think I felt that way but my sisters symptoms got worse when she was on it.
Posted 10/2/2020 10:01 AM (GMT -5)
Yes, I definitely herx from it. My dr. said the LDN can bring your immune system back online, so to speak, and then your immune system starts to kill the Lyme. When I increased from 1.5mg to 3mg I herxed too much, and had to back down to 1.5mg.
Posted 10/3/2020 9:49 AM (GMT -5)
I didn’t herx on it. I’m currently at 4.5mg.

Initially I skipped one day and didn’t notice a difference. Then I tried skipping 2 days, still nothing. I’m feeling really disappointed as I was hoping I’d have some relief from my symptoms. I don’t know what to do. I’m wondering if I should just take an extended break from it and restart later.

Sigh
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