Low dose naltrexone

Hello,

I am from the Lyme Disease message board, but I am not here to see who may or may not have Lyme. I am here because of info given to me regarding Low dose naltrexone.  It sounds miraculous and I am extremely interested in learning more about it.  I understand that this drug has been very significant in the treatment of dozens of illnesses/diseases  -- especially  MS.  This info was passed to me specifically as a treatment for lyme disease.

Can anyone tell me what they know about this drug or about their experience with it?

Hi +Lyme,

I have just started using low dose Naltrexone (10 days at 3mg) and I have experienced three positives. My left leg which is usually very stiff is much softer at night I can curl up on my side which I could never do before. The other night I woke up cold so I decided to put on some socks. I actually bent over and could reach my feet which I have not been able to do for more than 5 years. This was really exciting for me!!!! This all happens at night I think because you take the naltrexone then and it gives you a spike in the night. I have not seen any change in the daytime yet. NO negative side effects so far.

I also sleep better and dream (nice dreams) a bit more. If you go to ThisisMS there is a thread there. One guy has gone from a wheelchair to walking another lady says she feels great but does not mention anything else. It seems like everything the results are very personal. Two things - you have to have it made up by a compounding chemist and make sure they use unaltered naltrexone and do not just grind up conventional naltrexone as this is slow release. Also it clashes with certain drugs. On the ThisisMS website you will find a link to Crystal who has has great success with it and has her own web page.

Good luck

Thank you so much for your inputs, Gretchen and Popsie! I appreciate it!   From what I"ve read so far and from the remarks you've made about people you know, and remarks I've received from others, I don't understand why more people aren't trying it?

Hi +Lyme,

Here is Crystal Nason [[email protected]] address. She has had great success with LDN, is in US & has a list of drs who will prescribe LDN if you are having trouble. I just went into my local clinic and saw a dr and told her I wanted LDN. She had never heard of it (!!!) & was a bit worried. It is only available as a 50mg slow release tablet for drug addicts. When she heard that I only wanted a script for 3mg per day she was happy to oblige. She said I must go for kidney & liver bloodtests after 3 months which I am happy to do & to remembert her when I become famous.

You have to get it made up by a compounding chemist and it MUST be the unaltered QUICK release drug.

If you read the Chronic pain board you will see a lot about LDN including some old posts they pulled up for me.

I think one of the reasons you do not hear much about it is because you cannot take it with opiate (Ithink) drugs as it cancels them. That apparently includes a lot of drugs for MS & pain.

Good luck

My other half has taken LDN since being diagnosed and swears by it!

MS is so predictable in its unpredictability I guess its difficult to make any sweeping generalisations about its use but it has meant a relatively symptom free existance for 5 years for him

LDN and the power of positive thinking seem to be very powerful in his case

Can certainly recommend it - get the doseage right - started at 3mg and since have moved to 3.7mg but its all individual

No side effects that he has experienced other than at higher doses (4.5mg) its caused his legs to tingle (not an MS sign)

give it a go....

Anna x

Hi all,

This is a follow up post about my experiences with LDN.
My MS predominately affects the left side of my body.

After 2 weeks on 3 mg dose my left leg became nice and supple and bendy at night (after I took the naltrexone). I could lie on my side for the first time in more than 5 years. But by 7 am it was stiff & inflexible again.

After 6 weeks on 3mg of LDN I notice that my left leg is supple for longer. At about 10.30 am today I knelt and cleaned some stains off the carpet. I was also been able to kneel and get something my dog wanted from under the couch. Usually the spasticity in the leg tips me forward when I try to kneel and it is a real battle of wills between the stiff leg and me.

I am also noticing that the dexterity in my left hand is improving. I am typing easier as the left hand is straightening (the last three fingers had become bent and clawlike) and is more flexible.

Side effects - I have to be careful to avoid getting constipated but al long as I have a couple of drinks in the day and be sure to eat some fruit & some dried fruit all is good.

Otherwise I feel fantastic and hopeful of more improvements.

Will post again if there is anything interesting to report.

Hey +Lyme,

Thought I would keep you up to date.

Firstly a warning - do not get carried away. I decided that I could run before I could even walk properly. Feeling so good that I tried to carry a heavy bag of groceries and landed up on the floor looking at the ceiling. No breakages to me or the groceries so that was good. But getting up is always the hard part cos my left leg goes stiff and makes it really difficult to get up.

BUT NOT THIS TIME. I rolled over onto my front and found I could bend both legs so I could kneel and from there standing was a breeze. Hey, isn't it great to be able find good news in a fall. Thanks to LDN

Sorry you feel bad that must be very offputting, hope you can hang in and see some improvement soon. Yes, you are definitely right that everyone reacts differently to every drug.

I saw this article :

LDN for Multiple Sclerosis – Dr. Maira Gironi, an Italian neurological researcher, treated 40 patients affected with Primary Progressive MS (PPMS) with LDN for six months, concluding that LDN was not only safe and well-tolerated, but halted the progression of the disease in all but one patient. The results from this pilot study were published in the journal Multiple Sclerosis in September 2008

but I do agree with you that 6 months is not long enuf to conclude that it helped halt progression. I will need to go at least a year without any new symptoms to begin to think that LDN is halting the progression.