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Posted 10/10/2016 3:10 PM (GMT -5)
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Post Edited (1000Daisies) : 5/14/2021 9:03:47 PM (GMT-6)

Posted 10/10/2016 3:20 PM (GMT -5)
I think so Huddie. Most people it would seem would feel worse initially, especially if the immune system is really low. I know sometimes people start with too high of a dose as well. From all that I've read it's best to start with 1.5mg some start with 3 and have to pull back.

I haven't tried it, but I do have it.
Posted 10/10/2016 3:22 PM (GMT -5)
I tried it - this was before I had a lyme diagnosis.

I started with 1.5 mg dose (that was the dose of each capsule) and after awhile (a week or so I think?) went up 3.0 mg...still nothing good...then went to 4.5

I think I stayed on it for 4 weeks...maybe a bit longer...can't remember. maybe 6 weeks?


I had the opposite reaction that many have- I started to have pain at night. I always had pain during the day, but it would go away when I went to sleep. After the LDN, I started to get pain.

It could very well have been a coincidence.

Also, I may not have given it a long enough try.

Others have posted it has worked for them.
Posted 10/10/2016 4:40 PM (GMT -5)
Lol....Oops. Sorry1000D. I must have read a thread from Huddie right before this one.

So I just left Dr#1 appt. My vitamin A and vitamin D levels are low again and he is a big believer in that these 2 are most instrumental to our immune system....I did slack off a bit, but who knew that would happen. Anywho that's where I am for now...getting those levels back up. He doesn't want to do anything extra until my levels are up. He says that if those levels are down then nothing that we take is going to give us the biggest bang.
Posted 10/10/2016 4:54 PM (GMT -5)
Excavator - 3 mg isn't higher than most people.

I believe the usual dose is 3 or 4.5 mg.
Posted 10/10/2016 4:57 PM (GMT -5)

Krimpet 🍔 said...
Lol....Oops. Sorry1000D. I must have read a thread from Huddie right before this one.

So I just left Dr#1 appt. My vitamin A and vitamin D levels are low again and he is a big believer in that these 2 are most instrumental to our immune system....I did slack off a bit, but who knew that would happen. Anywho that's where I am for now...getting those levels back up. He doesn't want to do anything extra until my levels are up. He says that if those levels are down then nothing that we take is going to give us the biggest bang.


How much D do you usually take?

I was surprised before lyme diagnosis when my Dr. was testing me for everything...that my D was low - even though I had been taking 4-6000 daily...for months...and had dropped down a bit a month or two prior to the test.
Posted 10/10/2016 5:08 PM (GMT -5)
I'm on a very low dose. 1.5mg at night before bed. It helps with muscle spasms but not for pain.
Posted 10/10/2016 5:09 PM (GMT -5)
I took it for hashimoto's. It helped to put that in check and my markers dropped dramatically. But, not sure if I had Lyme/Bart/Myco or not back then. Ironically, I got a crazy rash on my back that never really went away. it would get better than inflame, get better then inflame... i was on it from 2008 until 2014? 2013? I stopped when Lyme hit, not really sure why... but in hindsight I think my problems were all linked to these bacterial issues from the start.

My doc said he's put it back out there for me as he thought it could help, but I am taking enough stuff right now... I started at 1.5, worked up to 3.0 and ended at a consistent 4.5 mg.
Posted 10/10/2016 5:17 PM (GMT -5)

AzerilA said...
I'm on a very low dose. 1.5mg at night before bed. It helps with muscle spasms but not for pain.

Have you tried raising your dose of the LDN - maybe 3 mg? And see how you feel?
Posted 10/10/2016 5:19 PM (GMT -5)

3HumpedCamel said...

My doc said he's put it back out there for me as he thought it could help, but I am taking enough stuff right now...


I know - I get overwhelmed about all the stuff to take...everytime I read about some 'thing' I'm not taking...I have anxiety...that maybe I need it...and should add it to my protocol...
Posted 10/10/2016 6:35 PM (GMT -5)
Forgive my ignorance but what exactly is LDN supposed to do? I did look it up before but I need it in laymen's terms.
Posted 10/10/2016 6:49 PM (GMT -5)
In higher doses it reverses opioids effects - and is used to help people who are alcohol and opioid dependent - to manage their withdrawal when trying to get off these drugs/alcohol.


What they found in lower doses, is it blocks the opioid receptors (for a few hours while you sleep) - and your body's response is to produce more endorphins and enkephalin (immune system element).

This overproduction is responsible for the pain relief.
Posted 10/10/2016 6:55 PM (GMT -5)
Oh okay, so it is in no way a cure? Just a relief?
Posted 10/10/2016 7:01 PM (GMT -5)
Well, it could help - since it does help with immunity. I believe some people with MS are having some good results.

Also, if we can reduce the cytokine cascade (pain and inflammation) - that aids our healing.

But, no, it's not enough on it's own IMO.
Posted 10/10/2016 7:31 PM (GMT -5)
I should ask my ND about it. I have a lot of muscle pain. None of the doctor's I ever see seem to know what to do for me. I feel like I have to suggest it to them. It really annoys me. I think the ND you were telling me about Girlie, is working out of the clinic of the new one I just recently saw.
Posted 10/10/2016 7:37 PM (GMT -5)
Oh, really...well you have another option if yours' doesn't work out.

So, the LDN needs to be compounded to get that low dose.

I just showed my Dr. this website: (my regular GP)

www.lowdosenaltrexone.org/index.htm#What_dosage_and_frequency
Posted 10/10/2016 8:06 PM (GMT -5)
Your regular GP sounds like an angel Girlie.
Posted 10/10/2016 8:13 PM (GMT -5)
She's quite open-minded and has been supportive.

She has never said to me that I don't have lyme...or I should be finished treatment.
She tests me monthly for kidney and liver function.
..and she reminds me how well I'm doing compared to three years ago.


yes...I guess you're right..she is an angel.
Posted 10/10/2016 9:20 PM (GMT -5)
A couple months ago, I started taking some that I'd purchased online from some guy overseas (Thailand), because I'm not able to see a doctor who'd be willing to cooperate with me in my treatment for my various conditions.

Though, it's in its whole form, with fillers, so I'm forced to dissolve it in water (50mg pill in 50mg of water), then dose with a syringe.

Thus far, I cannot really speak on what benefits I've seen, because I have so many overlapping things that stand in the way of me really feeling things out as well as I'd like (there's not a day I don't go without reactions to certain foods or chemicals, which make it difficult for me to tell what's going on with my Lyme/co).

But, what I can say is that I know it's had some sort of effect on me, and, at the very least, it's not a negative one.

Initially, I experienced difficulty sleeping, which is common, and, on top of that, the area in which I'd had a cyst removed, a cyst that'd been very clearly tied to my infections, got all sore and inflamed, then split open and start oozing fluid again. This occurred within 24 - 36 hours of my taking my first dose of Naltrexone, and wasn't something that'd happened in the 10 months since I'd had it removed.

That said, I do not think it was a coincidence.

There's definitely something to LDN, for sure.

I plan to keep using it, because it's so cheap - I think I paid $50 for what equates to an 11 month supply.

Also, if you can get a prescription, and get some Naltrexone through a compounding pharmacist, it might be even more potent.

:D
Posted 11/23/2016 5:13 PM (GMT -5)
I've been on LDN for over a year. I started at 2.5 mg nightly; I'm now taking 3 mg. It has helped my pain, which has in turn helped my sleep.
Posted 11/23/2016 8:00 PM (GMT -5)

1000Daisies said...
Well, I talked to our NP about this, and he said he has seen really low success with it (like 15%). He said it's something we could try given the risks/side effects are so low, but he wasn't very optimistic about it for our case. : |

1000D what are you looking to gain from using LDN?
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