Low dose Naltrexone

[Lynn]

I believe I have posted before about my difficulties with depression, anxiety and just feeling darn toxic while taking LDN. For about 6 weeks, I was down to taking .5 mg every 5-7 days. I also added milk thistle and a gluten free diet during that time. I didn't feel like the LDN was doing much for me except if I would extend the time between doses to two weeks. Then I would get a euphoric happy feeling the next day after taking it.

Since I really believe that LDN could help me in the long run, 10 days ago, I went back to taking 1.5 mg every day. My husband was going out of town and I thought it would be a good time to crash on LDN if there ever was one. I find that I am tolerating the LDN better now. Still no dramatic improvement and sleep is more difficult. But I have always had trouble with sleep and take Ambien. I am hoping to go another couple of weeks and see if there is any improvement. I think the milk thistle was a key component to being able to tolerate the LDN.

Lynn

 

[Jenny]

Hi Lynn

That sounds hopeful! Can I ask - how much milk thistle do you take?

Jenny

 

[JT1024]

Tracking LDN

I just found a thread on the patientslikeme website that says they have team of 14 looking at LDN. http://www.patientslikeme.com/forum/show/71386.

The more people taking LDN that track their progress/side effects the better.

I'm not on LDN yet but I'm carefully watching it!

Here's a snapshot of the report on LDN: http://www.patientslikeme.com/treatments/show/64-low-dose-naltrexone-ldn

 

[Resting]

I can't possibly read all of the posts on here that preceded mine, so my apologies if this is redundant.

I have been on LDN for 3 months and find that it helps with mental clarity and a minuscule amount of increased energy. I take it in the AM. My doc assured me it doesn't make a difference if you take it at night. I started it at night and had complete insomnia then spoke with my doc and switched to morning.


The thing that is odd about it for me is that it helps for a while and then it stops. So I go off it for a week and then start it again and gain the same result once again. So now, I just rotate 2 weeks on 1 off. If anyone knows why this would occur, please feel free to enlighten me.

 

[dancer]

Resting,
I'm also finding (after 3 months on 2.25 LDN) that it's helpfulness seems to have faded. So I'm taking a few weeks off, and then will restart.
I definitely noticed less muscle/generalized pain while on it, and after the initial week of insomnia, I noticed better sleep and more restorative...and a bit of increased energy. But then the sleep quality declined again, and energy faded, and brain fog has been severe.

Hoping that after time off, when I resume LDN I'll get some improvement again.

 

[Diva55]

I was trying to find why LDN worked for a while for some then stopped.

I didn't find an answer but Dr Jared Younger who is a big advocate of LDN said that if it stops helping to go to a lower dose. It seems that you shouldn't stop it altogether but go to a very small dose then slowly adjust up to find your individual dose.

Again I've read that below 1.5mg is not worth taking and the maximum dose is 4.5mg. I certainly got responses on doses below 1.5mg but even when I had tough times I was advised by various people not to stop it. I know it's hard for some people to do that.

I agree that the liver needs support as LDN stirs up all those viruses / toxins - they need to get out via the liver so it makes sense to support it.

Just pondering but I wonder if that's why LDN stops working after a while in that it needs that liver support?

 

[oerganix]

I was trying to find why LDN worked for a while for some then stopped.

I didn't find an answer but Dr Jared Younger who is a big advocate of LDN said that if it stops helping to go to a lower dose. It seems that you shouldn't stop it altogether but go to a very small dose then slowly adjust up to find your individual dose.

Again I've read that below 1.5mg is not worth taking and the maximum dose is 4.5mg. I certainly got responses on doses below 1.5mg but even when I had tough times I was advised by various people not to stop it. I know it's hard for some people to do that.

I agree that the liver needs support as LDN stirs up all those viruses / toxins - they need to get out via the liver so it makes sense to support it.

Just pondering but I wonder if that's why LDN stops working after a while in that it needs that liver support?

Pure speculation: maybe it's still "working", but on things that don't express in how we feel. I know that some other treatments have found that clinical tests show improvements sometimes while the patient doesn't feel any better. Then they start feeling better later. I have no idea if that could be the case for LDN.

I do know that I want to sleep more since starting it, and I feel like my body is "working on something" while I sleep. I also get into a routine of doing more since I'm feeling better, and that is probably doing too much, too fast. My partner tells me I seem better to him, even when I don't feel it.

I also agree that the liver support is probably essential and it may just be catching up on cleaning up, when we don't feel improvements.

I'm going on 11 weeks on LDN and feeling better than I did last year at this time, always my bench mark, despite a lot of physical stressors going on in my life. (Hotter than usual hot season, taxi drivers on strike for a month, so I'm walking more than I'd like, etc.)

 

[Lynn]

Hi Lynn

That sounds hopeful! Can I ask - how much milk thistle do you take?

Jenny

I am taking 700 mg of standardized milk thistle. I think it is important to make sure it is a standardized dose so you know how much you are taking. I forgot to mention that I also added Vitamin D (10,000 IU) to my regimen ( I was very low when tested).

Lynn

 

[alice1]

i took 3 days off and have been on for 4 nights now. still not sleeping through the night but i have noticed a jump in my energy and my brain fog has lessened.i also upped my liver support.all this on 1/4 of 1 mg and i'm going to go to 1/2 of 1 mg this weekend.
if being a snail is what it takes for me then a snail i am.yikes!

 

[jace]

I've been on LDN for a week now, at 1.5 mg/night. I am keeping a detailed diary, which I will review/edit/post in a month, after I've been on 4.5mg for a week. Last night was the first night at 2.5mg, and again, as the first night on 1.5mg, my sleep was wild and crazy, surfing in and out of strange dreams.

You know, them old dreams are only in your head - as Mr Dylan said. Mind you, the Myhill decision didn't help.

And again, energy is much better on the first day. It will be interesting to see if it tails off as this week progresses, as it did on the 1.5mg dose.

I think maybe the worsening symptoms could be (how much do I have to hedge round this statement?) dealing with toxic dieoff... Herxenheimer style.

I'm using Spanish liquid Antaxone. It is way cheap, way easy to compound. I am also taking cats claw, 50mg x 3/day, and AllicinMax, ditto.

hitting viruii from many angles

 

[Jenny]

Just come across this - Immune Reconstitution Inflammatory Syndrome (IRIS)- seems to describe what might happen when anti-viral treatments lead the immune system to work better.

Similar to the so-called 'herx' people describe when dealing with bacterial infections.

http://www.thebody.com/content/art2525.html

I'm a bit sceptical of these hypothesised processes, but it might make sense of getting worse on LDN, as I'm still doing.

 

[Resting]

Alice1 "i took 3 days off and have been on for 4 nights now. still not sleeping through the night"



Try taking it in the morning. It has the same benefits without the side effects. Hope you get some sleep soon.

 

[Resting]

I am taking 700 mg of standardized milk thistle. I think it is important to make sure it is a standardized dose so you know how much you are taking. I forgot to mention that I also added Vitamin D (10,000 IU) to my regimen ( I was very low when tested).

Lynn

I had elevated liver enzymes so I took Milk Thistle and subsequent tests showed it did indeed bring my levels to normal.

 

[Cloud]

Just come across this - Immune Reconstitution Inflammatory Syndrome (IRIS)- seems to describe what might happen when anti-viral treatments lead the immune system to work better.

Similar to the so-called 'herx' people describe when dealing with bacterial infections.

http://www.thebody.com/content/art2525.html

I'm a bit sceptical of these hypothesised processes, but it might make sense of getting worse on LDN, as I'm still doing.

I didn't know anything about this....but it sure seems to fit many of my responses to tinkering with the immune system and infections. Great link....thanks Jenny

 

[*GG*]

Alice1 "i took 3 days off and have been on for 4 nights now. still not sleeping through the night"



Try taking it in the morning. It has the same benefits without the side effects. Hope you get some sleep soon.

My Dr told me that it is useless to take LDN during the day, your immune system "restores" itself during the night/sleep. I see this reported often, but I doubt that it is true. People should get a sleep study done or see a good sleep Dr! I know it is hard, I have had to piecemeal together my doctors to get better. I see 3 differenct CFIDS drs. Also, I was taking 8000 IUs of Vitamin D and my level was 70. So my Dr said to take just 5000 IUs because summer is just around the corner. FYI

 

[leaves]

Hey GGingues
do you notice any benefits from the vitamin D? I am trying to up my vit d level too, am now at 35 or so.

 

[garcia]

The idea that doses below 1.5mg are useless is a myth. Many people (especially CFSers) are taking lower doses than this and reporting benefit.

It is well known that tolerance to LDN (like many drugs) can develop. Rather than switching to a lower dose, I would advise not taking it everyday. Either have an "off" period, or take it every-other-day. How you do this will be up to you. Immuno modulators are generally supposed to work better when not taken constantly.

However if you are taking it everyday and still getting benefit, then carry on taking it everyday.

 

[jace]

It is well known that tolerance to LDN (like many drugs) can develop

Garcia, is that tolerance, as in no effect gained after a while, or intolerance, as in side effects too harsh to stand?

LDN newbie jace

 

[garcia]

Garcia, is that tolerance, as in no effect gained after a while, or intolerance, as in side effects too harsh to stand?

LDN newbie jace

Jace, I was talking specifically about tolerance as in a reduced (or no effect) after a while of usage.

 

[*GG*]

Hey GGingues
do you notice any benefits from the vitamin D? I am trying to up my vit d level too, am now at 35 or so.

Cannot say with any certainty since I have been doing a lot differently lately. Just so tired of this damn disease and the lack of treatment and study except for more recently. Still working, so I guess that is good, in a manner.