Low dose Naltrexone

[mellster]

7 weeks into LDN so far and I am excited to continue taking it and hope it will continue to help improving for another couple months. I was ~75% when starting to take it and have reached ~85% around this time. I was able to do a - albeit shortened to 35 minutes - kickboxing class today without getting any PEM besides minor transient congestion/oxygenation issues. Besides I can exercise moderately around 2-4 times per week for 30-45 minutes (in addition to the CVAC therapy). I still feel worst in the morning (around 10 am) and have residual moderate inflammatory pain and very mild respiration issues plus currently also fairly mild IBS/cramping and much reduced muscle twitching. I still get sweaty and twitchy right after taking the LDN (started with half and am on full 4.5 mg dose since week 3) and can feel temporarily increase in pains (mostly needles and pins) and it takes a while to fall asleep, but once asleep I sleep better than before and insomnia has been reduced. I had a period of increased gland swelling and tenderness around 3-4 weeks on LDN but ironically felt very energized then. It may not be a cure and I may need to continue for a few more months, but so far it seems to have been a small miracle.

 

[PokerPlayer]

Can't wait to start ldn again ... first time I tried it at just 1.5mg per day and after 4 days I was feeling overstimulated so I had to stop. Going to start up again except at .25mg but also going to try to move to a mold free environment first and foremost.

 

[jstefl]

Good news Mellster !

I have been taking LDN for almost eight months, but a lot of that time has been at very low doses. I am now up to 2 mg per day.

Your comment about quitting brings me to wonder when it is time to quit. I don't recall anyone talking about that so far.

Does a person quit when the improvement stops? Are there any cases of things getting worse again after they have stopped?

It would be nice to have an exit strategy, especially since I am using internet LDN.

John

 

[heapsreal]

7 weeks into LDN so far and I am excited to continue taking it and hope it will continue to help improving for another couple months. I was ~75% when starting to take it and have reached ~85% around this time. I was able to do a - albeit shortened to 35 minutes - kickboxing class today without getting any PEM besides minor transient congestion/oxygenation issues. Besides I can exercise moderately around 2-4 times per week for 30-45 minutes (in addition to the CVAC therapy). I still feel worst in the morning (around 10 am) and have residual moderate inflammatory pain and very mild respiration issues plus currently also fairly mild IBS/cramping and much reduced muscle twitching. I still get sweaty and twitchy right after taking the LDN (started with half and am on full 4.5 mg dose since week 3) and can feel temporarily increase in pains (mostly needles and pins) and it takes a while to fall asleep, but once asleep I sleep better than before and insomnia has been reduced. I had a period of increased gland swelling and tenderness around 3-4 weeks on LDN but ironically felt very energized then. It may not be a cure and I may need to continue for a few more months, but so far it seems to have been a small miracle.

Cool, glad your onto something dude. keep it up.

cheers!!!

 

[Sushi]

Does a person quit when the improvement stops? Are there any cases of things getting worse again after they have stopped?

It would be nice to have an exit strategy, especially since I am using internet LDN.

John

Hi John and Mellster,

I have been taking LDN for about 2 years and am now beginning to slowly reduce my dose. I don't know of anyone getting worse after taking it for a long period, I am just feeling that I don't need so much now. I have also been taking GcMAF and I think this is allowing me to reduce my dose. Another friend taking GcMAF is also slowly reducing the LDN dose.

I will go by how I feel, but one day I will probably reduce it down to zero--provided other strategies continue to help me get better.

Sushi

 

[mellster]

I think reducing the LDN at some point is a good strategy, but if you keep it at a very low level it almost becomes a homeopathic type supplement. I also wanted to put things into perspective a bit, I calculate my activity/recovery level mainly by degree of exhaustion/fatigue and how limited I currently am compared to when I was 100% - this does not include pain since it does not necessarily limit my activity level (more how much I can enjoy it), if I had to include pain, I'd probably have to subtract at least 5% from overall well being. I did get quite some torso inflammatory pain by the evening and a light flu-like cytokine reaction, but it is mild compared to the PEM I used to experience. Having been more in the FM camp, I will be focusing now on pain reduction therapies and hope continuing the LDN will alleviate it further. cheers

 

[Ninni]

I started taking LDN yesterday evening. Even though I took a very small dose, I could not sleep at all before 5 am. And it for some reason lowered my blood pressure to 80/40. It also increased my pain. I really would like to continue, but not getting almost any sleep at all and with that blood pressure Im not sure if Im able to.

 

[sensing progress]

I started taking LDN yesterday evening. Even though I took a very small dose, I could not sleep at all before 5 am. And it for some reason lowered my blood pressure to 80/40. It also increased my pain. I really would like to continue, but not getting almost any sleep at all and with that blood pressure Im not sure if Im able to.

Hi Ninni, LDN gave my terrible insomnia also. I tried it for several days and the insomnia did not go away as it does for some. Anyway, I now take it in the mornings and still seem to get a therapeutic effect from it, so you might try that.

 

[penny]

Hi Ninni, What dosage did you start at?

 

[jstefl]

Ninni

What do you consider a small dose? I needed to back off to a .2 mg dose every other day, and very slowly work my way up from there. I am up to 2 mg every day, and that has been helpful. It has been almost a year, but I still can't take more than the 2 mg dose.

I also have found that I need to take it in the morning.

John

 

[Ninni]

Hi penny, sensing progress and John. Thank you so much for your responses and for sharing your experiences.
The doctor prescribed 1,5 mg capsules. I opened the capsule and poured about half of the content away, so I took maybe around 0,75 mg. The doctor had told me to increase the dose to 3 mg after only a couple of days. I always get the stare of disbelief when I tell them I get side effects from such small doses, so its hard to get anyone to prescribe as small doses as I would need.
I have taken a break from LDN now for a couple of days since it made me so weak and nauseated on top of the insomnia and blood pressure decrease.
I think I will try to switch into a morning dose and try to pour away even more of the content before taking the 1,5 mg capsule. How do you measure the exact amount you take? Or do you have it in another form than capsules?

 

[Sushi]

Hi penny, sensing progress and John. Thank you so much for your responses and for sharing your experiences.
The doctor prescribed 1,5 mg capsules. I opened the capsule and poured about half of the content away, so I took maybe around 0,75 mg. The doctor had told me to increase the dose to 3 mg after only a couple of days. I always get the stare of disbelief when I tell them I get side effects from such small doses, so its hard to get anyone to prescribe as small doses as I would need.
I have taken a break from LDN now for a couple of days since it made me so weak and nauseated on top of the insomnia and blood pressure decrease.
I think I will try to switch into a morning dose and try to pour away even more of the content before taking the 1,5 mg capsule. How do you measure the exact amount you take? Or do you have it in another form than capsules?

Hi Ninni,

You don't have to throw away the extra naltrexone in the capsule. Just keep track of how much you are taking out, dissolve it in distilled water (measure that too so you know the dose) and keep it in the fridge in a brown glass bottle. It will stay potent for at least a month.

This is how I titrated my doses. It took me 4 months to get up to 4.5 mg. For me, if I took ambien with the LDN at night, I could sleep, though not as well as usual. When I got to a much higher dose, it actually helped my sleep.

Good luck!
Sushi

 

[Ninni]

Hi Ninni,

You don't have to throw away the extra naltrexone in the capsule. Just keep track of how much you are taking out, dissolve it in distilled water (measure that too so you know the dose) and keep it in the fridge in a brown glass bottle. It will stay potent for at least a month.

This is how I titrated my doses. It took me 4 months to get up to 4.5 mg. For me, if I took ambien with the LDN at night, I could sleep, though not as well as usual. When I got to a much higher dose, it actually helped my sleep.

Good luck!
Sushi

Thank you Sushi for the advice!

 

[jstefl]

Hi Ninni

I also use the "disolve it in water" method. I mix a 50 mg tablet with 100 ml of purified water. I found a baby syringe at the drug store, and take 4 ml every morning. This is a 2 mg dose. When I was taking smaller doses, I used 500 ml of water to make it easier to measure small doses. With 500 ml, a 1 ml dose is .1mg. If you can't find a suitable measuring device, a teaspoon is about 4.5 mg.

I spent many months working up to my 2 mg dose. I started at .2 mg every other day, and incresed it by .1 mg every two weeks. When I got to 1 mg every other day, I started adding in .2 mg doses on the days I wasn't taking the 1 mg dose.

By going slowly, I avoided the side effects. If your dosage bothers you, I would suggest taking less. Back off until the dose is easy to take. I tried larger doses at first, and found that they only caused pain with no beneficial effects.

LDN has been very beneficial for me. I would suggest that you stick with it for a while. I found that even tiny doses made a noticable improvement in the way I felt, so don't feel bad if you can't handle a full dose right away. I have no idea how anybody can handle a normal 50 mg tablet.

When I first started, I found that if I took it every day, I could handle it for a day or two, then it would accumulate to a point where I felt terrible. Skipping a day between doses really helped me get used to the LDN. After all this time, I still can't sleep if I take it in the evening.

It is very possible that you may have to start lower than .2 mg. I have talked to those that needed to start at less than that. The .2 worked for me, but we are all different.

John

 

[Sushi]

I take the needle off an insulin syringe and use that to measure my dose. It is more finely calibrated than what you can usually buy in a pharmacy.

Sushi

 

[Ninni]

Thank you John and Sushi! I appreciate your help and advice! Glad to hear that you have had benefits with LDN!

I have no idea how anybody can handle a normal 50 mg tablet.

LOL, I thought about this too...How can anyone possibly survive that kind of dose...

 

[sanghagirl]

LDN is very effective beyond it's ability to relieve pain

I took LDN for a time 8 or 9 years ago when little was known but patients with MS were getting amazing results. Stopped after awhile and haven't thought about it in years. But recently my mysterious neurological pain returned with a venegence. So I did more research on LDN and was amazed at what I found. More studies, more clinical results for a variety of immune related illnesses, success stories etc.. I happened to have some that a doctor had prescribed for me last year. He doesn't know anything about it but just followed my request. I didn't end up taking it at that time. So, I see I am making a short story long LOL. I started taking it about 5 days ago when I was having level 10 unrelenting pain. Well, the pain is almost gone now. I am very sensitive to all meds and supplements as many of us are. But I seem to be tolerating low doses(.75mg) so far. I am a little tired and feel cold at times but other than that I am ok. I have sleep problems already and LDN hasn't made them worse. Just some dreaming.The relief from the pain is joyful to experience.

The research I found seems to be showing that LDN has far greater effects on the immune system than originally thought. I believe it is a modulator so those with autoimmune diseases as well as those with immune deficiency illnesses may benefit even if they don't have severe pain. You could also call this an adaptogen with low toxicity and few side effects.I do see that some people have had a lot of problems with it and I am sorry to read that.

I am seeing an LDN specialist next week who happens to practice in my hometown of San Diego. I am grateful to have such a practitioner here. She appears to be holistically minded as well. I will post my progress as I move along for those who may be interested.

 

[leela]

Oh, please do update us, sanghagirl. I didn't know there was such a thing as an LDN specialist. I will be very curious to hear what you learn.

 

[sanghagirl]

Yes, I was surprised too. The word "specialist" is mine and may have been somewhat misleading. She talks about herself as a pain specialist who treats the whole body. But from reading the info on her blog and speaking to her briefly she appears to be quite knowledgable on the use of LDN. She even presented an amazing pain case study of someone with CRPS on her website. But she is a pain specialist, not a CFS/Fibro specialist.She does indicate she works with other specialists to address other related issues. So if you don't have some kind of pain she wouldn't be someone to consult. She also seems to be able to help with sleep related problems of which I have plenty. You can bet I'll post anything helpful re: sleep!!!!

Her name is Nancy Sajben. I found her on Google. I did speak to the compounding pharmacist she uses to get some kind of reference. It was excellent.There is some controversy about LDN among doctors themselves and I'm not sure about her opinion. I will know more when I meet with her.

 

[penny]

Very interesting! I'm in San Diego too, always nice to hear of there being a good resource locally.

Looking forward to hearing about your progress!