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Low dose Naltrexone

Kenny Banya

Senior Member
Messages
356
Location
Australia
I think I am seeing a benefit now that I have jumped to 4.5mg for 3 days now. I am more awake in the morning after getting up. But I may be speaking too soon.
Anyone on doses higher than 4.5mg?
 

Misfit Toy

Senior Member
Messages
4,178
Location
USA
I am envious of all who do well on LDN. For three weeks I tried it. Starting at .5. I was exhausted and dizzy and my POTS became worse. I couldn't drive. I had to stop and then I started at .1 and I was so exhausted and flatlined that I basically spent nine days doing nothing. I couldn't think of much on that dose and that's a pretty low dose and I finally stopped it. I started again at .05. This dose made me even worse.

The one thing that has been constant on LDN is a horrible headache and this time a migraine. On 05 my pain skyrocketed an hour and a half after taking it at bedtime so for two nights I've had no sleep and now it is 4:20 AM and I have not had LDN in over 30 hours and I am still in pain and I have a migraine that no matter what I take it's not touched.

I'm upset because my rheumatologist really want to be on this- he told me that MS patients of his have gone into full remission. I have Sjogren's syndrome and Celiac disease with fibro.

There are negative side effects and then there are side effects that bring you to your knees, or you can't function. I couldn't function on this. The question becomes how low should you go. In otherwords, how much worse should I get.

I am very sick now and I'm worried. This has set me back. I took it because I have horrible neuropathy in my feet and I wanted the LDN to help the Sjogrens with the overall inflammation.

What to tell my doctor? Another failed attempt at a medication. It just sucks.

I could start at .01 but I'm so scared now. My body doesn't like this drug. Not one bit.

Everyone on the form on Facebook keeps asking me if I have Lyme disease due to the fact that I had such a bad response. I was sweating profusely and hot and I felt like I had the flu and that was only on .05. No, I have ME with SS. EBV and CVID.

Anyway, just wanted to share my crazy experience. Hoping for sleep soon. Housebound now.
 
Messages
24
I am envious too. The one thing that fixes me is high dose clarithrymycin. The one thing that crashes me the worst is LDN.

I know how you feel.
 

ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
Hi @Misfit. What an awful experience. When I started LDN, I opened the capsules and took a match head- sized amount on Day one, increasing by that much over the next day or 2. I needed to use coffee enemas nearly daily because of detox symptoms. I now consider LDN one of my basic requirements. So sorry this is going so hard for you.:hug:
 

hamsterman

Senior Member
Messages
183
Location
Los Angeles
Just an update. After I went through a series of PEMs, I gave up LDN... since it didnt seem to help with crashing. But after I got my crashes under control, I gave it another try... and it seems to be giving me the benefit it once did. I guess its that way with everything.... PEM kinda screws up everything.
 
Messages
37
I am trying LDN for autoimmune problems including arthritis. I started out on a .5mg dose because I'm very sensitive to medications. Within a couple minutes I got euphorically and sexually stimulated and couldn't sleep. In the morning I was exhausted and had a very difficult time getting out of bed. I tried this a few days, then lowered the dose to .25mg, and the effect is pretty consistent.

The exhaustion and numbness after the dose wears off is what concerns me, though it does seem to be helping with autoimmune.

Are there other similar experiences? I'm a bit concerned about pushing through, because it feels like my body is going into a deficit situation.

Opinions of @Misfit Toy and others would be welcome.
 

hamsterman

Senior Member
Messages
183
Location
Los Angeles
I am trying LDN for autoimmune problems including arthritis. I started out on a .5mg dose because I'm very sensitive to medications. Within a couple minutes I got euphorically and sexually stimulated and couldn't sleep. In the morning I was exhausted and had a very difficult time getting out of bed. I tried this a few days, then lowered the dose to .25mg, and the effect is pretty consistent.

The exhaustion and numbness after the dose wears off is what concerns me, though it does seem to be helping with autoimmune.

Are there other similar experiences? I'm a bit concerned about pushing through, because it feels like my body is going into a deficit situation.

Opinions of @Misfit Toy and others would be welcome.

What other autoimmune problems do you have? I had to wait about 2 weeks before the negative exhaustion issues stopped. But I didnt have numbness. That may be a bad sign, I am not sure.
 

hamsterman

Senior Member
Messages
183
Location
Los Angeles
I am envious of all who do well on LDN. For three weeks I tried it. Starting at .5. I was exhausted and dizzy and my POTS became worse. I couldn't drive. I had to stop and then I started at .1 and I was so exhausted and flatlined that I basically spent nine days doing nothing. I couldn't think of much on that dose and that's a pretty low dose and I finally stopped it. I started again at .05. This dose made me even worse.

The one thing that has been constant on LDN is a horrible headache and this time a migraine. On 05 my pain skyrocketed an hour and a half after taking it at bedtime so for two nights I've had no sleep and now it is 4:20 AM and I have not had LDN in over 30 hours and I am still in pain and I have a migraine that no matter what I take it's not touched.

I'm upset because my rheumatologist really want to be on this- he told me that MS patients of his have gone into full remission. I have Sjogren's syndrome and Celiac disease with fibro.

There are negative side effects and then there are side effects that bring you to your knees, or you can't function. I couldn't function on this. The question becomes how low should you go. In otherwords, how much worse should I get.

I am very sick now and I'm worried. This has set me back. I took it because I have horrible neuropathy in my feet and I wanted the LDN to help the Sjogrens with the overall inflammation.

What to tell my doctor? Another failed attempt at a medication. It just sucks.

I could start at .01 but I'm so scared now. My body doesn't like this drug. Not one bit.

Everyone on the form on Facebook keeps asking me if I have Lyme disease due to the fact that I had such a bad response. I was sweating profusely and hot and I felt like I had the flu and that was only on .05. No, I have ME with SS. EBV and CVID.

Anyway, just wanted to share my crazy experience. Hoping for sleep soon. Housebound now.

Sorry to hear that. The flu and heat at .05 isn't that uncommon. I went through something similar. Since you have Sjogren's, I would say probably don't have Lyme disease. Those here that have Sjogren's, Cronhs, MS, Lupus, etc almost always have Auto-immune triggered ME (including myself), rather than infection-triggered ME.
 
Messages
37
What other autoimmune problems do you have? I had to wait about 2 weeks before the negative exhaustion issues stopped. But I didnt have numbness. That may be a bad sign, I am not sure.

IBS, Eczema are known. Tons of food allergies. Ankylosing Spondylitis.

I'm not taking LDN again. On the come down period after this last dose, approx 18 hours after taking it, I got what feels to be an autoimmune attack on collagen in a very sensitive region. It's freaking scary. Looks like my dopamine and signaling apparatus is too sensitive to this sort of manipulation, or too impaired.
 

Misfit Toy

Senior Member
Messages
4,178
Location
USA
I took LDN back in April and it took me months to recover. I had POTS so bad from it. I also couldn't tolerate .01. In fact, the lower the dose, the sicker I got. I felt like death on it. I was in so much pain. That was like some sort of bad trip. It KILLED my adrenals. Never ever again. I would never take it...EVER again. Hell to the no.
 

frozenborderline

Senior Member
Messages
4,405
Hi Xandoff,

I'm pretty sure that oxycodone works through the opiod receptors--which means you can't take it with LDN. LDN blocks those receptors for about 6 hours so your oxycodone won't work. This is a problem for those on pain meds. They have to be really lowered or stopped before taking LDN.

LDN does help a lot of people with pain, but they have to stop any drugs that work through those receptors first.

Sorry you had this hard experience!

Sushi
I know this was a long, long time ago, but this is not at all true. the dose of naltrexone in low dose naltrexone is low enough that opioids should still bind to receptors. apparently low dose naltrexone can diminish tolerance buildup when taken with opioids. However, if you are on opioids and take naltrexone after (even low dose), you could cause precipitated withdrawals
 

frozenborderline

Senior Member
Messages
4,405
being somewhat masochistic, I doubled my dose of 1.5 mg within three days...
now i'm noticing some side effects lol... feel kind of dizzy/unpleasant/headachey
almost like how opioid withdrawal is described
ugh
probably gonna back down to 1.5 mg
 

frozenborderline

Senior Member
Messages
4,405
i have this prescribed but I also went to the trouble of acquiring some liquid naltrexone solution from irc.bio, so that i can volumetrically dose, and maybe try ultra low dose instead of just low dose
 
Messages
3
I took LDN back in April and it took me months to recover. I had POTS so bad from it. I also couldn't tolerate .01. In fact, the lower the dose, the sicker I got. I felt like death on it. I was in so much pain. That was like some sort of bad trip. It KILLED my adrenals. Never ever again. I would never take it...EVER again. Hell to the no.

I feel grateful hearing from someone else who was negatively effected by LDN. I have also had problems with it; I felt fantastic the first day I took it, then the next day and subsequent days after I found it to be very stimulating (very stimulated adrenals), no matter what micro-dosage I took. Even if I took it in the morning, I would feel more and more stimulated as the day passed on and I had profound insomnia that night.

I took it for 3 months without realizing my nervous system was completely overstimulated, and when I stopped it, I had a hard time getting through life. In the end, I felt like it pushed my body past what it was capable of. But in the beginning, I did have positive effects from it (wasn't depressed, had lots of energy, could get through the whole day, hormones normalized, and had less severe PEM (at first)).

I consulted multiple experts who use LDN and none of them had heard of my reaction to it. I don't think my system can tolerate it, either, but no one could give me an explanation for it. I'd be happy to hear suggestions if anyone has any.
 

Gondwanaland

Senior Member
Messages
5,092
I'd be happy to hear suggestions if anyone has any.
I haven't tried LDN yet, but had the same result from a number of stimulatory substances like vitamin B12, P5P, anti-glycation supplement, etc.

My impression is that my body can't extract from food the building blocks for a healthy metabolism (water- and fat-soluble vitamins, EFAs, aminoacids etc).

Digestive enzymes helped a bit but not much. I think I have several mal-functioning / blocked enzymes.

I can't even take a dose of thyroid replacement high enough to lower TSH to desired values.
 
Last edited:

MEPatient345

Guest
Messages
479
LDN made me much sicker too even at tiny doses.. chest tightness and pressure, major sadness and worsened fatigue and brain fog. I tried diff doses (.125 to .75mg) and then alternate days for 4 or 5 months and eventually gave up.