Low Dose Naltrexone is the treatment I hear the most positive stuff about among PWMEs. Need some questions answered by those who have used it

[overtheedge]

i'd like to try some LDN but don't know where i should go for it

My health is in a rather bad state lately so traveling to a doctor would be difficult.
Has anyone here worked with an online doctor who can get them LDN anywhere in the USA?

Also I'm reading about LDN in general online but if there is any thread, website, or article that is particularly informative please post a link to it

Much of what I've read online about LDN is for other conditions or doesn't specify condition, is there anything about its use in CFS I should know about?

Thanks

 

[Rufous McKinney]

I get mine with an Rx from my doctor who suggested it, and then its compounded, so a compounding pharmacy has to make it (cut the 50 milligrams down to far lower doses)...and my insurer therefore won't cover compounded, so I pay for it myself, about thirty dollars a month.

Are tele- appointments still happening due to COVID, maybe you could find somebody to prescribe it?

 

[Jyoti]

Has anyone here worked with an online doctor who can get them LDN anywhere in the USA?

I haven't used this site, but I have had it bookmarked for a while. https://get.agelessrx.com/ldn-low-d...gqzpn8LDml9oIRqAEe24Sgxn2UjATwdxoCfp0QAvD_BwE I have had a lot of difficulty getting it prescribed---total silliness---and might give it a go soon. In any case, I thought it might be a resource for you, @overtheedge

 

[Springbok1988]

I got mine from agelessrx.com, as mentioned above. It was really easy to get. I just filled out a form and before I knew it, it was in my mailbox. I had to quit because I have bad insomnia and LDN made it much worse.

 

[Sushi]

a compounding pharmacy has to make it (cut the 50 milligrams down to far lower doses)...and my insurer therefore won't cover compounded, so I pay for it myself, about thirty dollars a month.

Or…I get the generic 50 mg tablets prescribed and then dissolve one in 50 ml distilled water—costs less than a dollar a month. (Keep it in the fridge—1 ml = 1 mg). I had it compounded for years but can’t tell any difference in effect using home compounding. Many patients do this, my doctor approves.

 

[Wishful]

If you try it, keep in mind that there's no 'correct' dose to try. You'll have to experiment to see which dosage works best for you (assuming it works at all). Sushi's idea of dissolving a tablet in water would make varying the dosage easy, instead of cutting capsules open and dividing the powder. Doctors might be less inclined to prescribe the full dosage tablets though, just because dissolving it in water isn't the standard way of doing it, and thus there's a possibility of legal hassles. Not that people can't abuse LDN capsules...

 

[2Cor.12:19]

Hi @overtheedge I’ve been on LDN 1 mg for 7 years and it’s a godsend. I rarely need to take Alieve or Tylenol.

Here’s the most comprehensive website I know of. It has dozens of video testimonials and interviews with physicians/researchers, plus information sheets for both patients and providers that can be printed. I used their provider info sheet to give to my dr when I requested it. Not all drs are open though. One thing you can do is contact your nearest local compounding pharmacy and ask for the names of local providers that prescribe it.
https://ldnresearchtrust.org/

 

[godlovesatrier]

I react pretty badly to this one. But we're all different. I'd give it a shot.

There's a Scottish pharmacy that does private prescriptions if people are UK based.

 

[heapsreal]

Not sure it's the most positive treatment amongst mecfser's, but it's worth a shot. You never know unless you have a go. Keep everyone updated on how you go.
Good luck

 

[Sushi]

If you try it, keep in mind that there's no 'correct' dose to try. You'll have to experiment to see which dosage works best for you (assuming it works at all). Sushi's idea of dissolving a tablet in water would make varying the dosage easy, instead of cutting capsules open and dividing the powder.

With LDN, most patients report needing to start with a VERY low dose (like .5 mg or less) and slowly titrating up. It took me 4 months to reach 4 mg as I seemed to get immune boosts that gave uncomfortable symptoms in the beginning. Maybe this is why many stop using it? For me, after reaching 4 mg I had no uncomfortable reactions.

 

[2Cor.12:19]

Yes, I started at .5 mg also and slowly worked up over several months to 4. For me 4 was too much so I gradually backed down to my best dose , which is only 1mg.

 

[Rufous McKinney]

I started at 3.5 mg and just take 3.5 mgs. Never experienced any side effects.

 

[Wishful]

With LDN, most patients report needing to start with a VERY low dose (like .5 mg or less)

As with Rufous, I started with 3.5 or 4.5 mg, and it worked fine (blocked pain fully by the next morning) with no side effects. It's up to you if you want to start really low and take several months of slow increases, or just take the recommended dosage first, and if that doesn't work or causes side effects, to then try the low/slow approach.

 

[Sushi]

It's up to you if you want to start really low and take several months of slow increases, or just take the recommended dosage first, and if that doesn't work or causes side effects, to then try the low/slow approach.

Very true, but just to elaborate, "side-effects" can be brutal. I know one patient who had a good response to an initial low dose so doubled it the next day and ended up in the hospital with a temperature of 103! Of course, it is very individual. I did have really difficult side-effects at first though.

 

[kangaSue]

It can affect your sleep if taken at night as is generally recommended. I found taking it in the morning was a workaround for that, but I had to take it before 7.00 am, otherwise it would still affect my sleep that night if taken any later in the day.

 

[2Cor.12:19]

It affects everyone differently. I take it at bedtime because it helps me sleep.

 

[overtheedge]

So I went ahead and bought some through the source you guys above recommended, agelessrx.com and it should be here in a few days
if anyone else goes with them just know most of their emails are being sent to the promotions section of my email which i almost never check, if i hadn't been looking for their email i wouldn't have know
Also they don't tell you when signing up and buying LDN but you need to do a televisit before they will ship it. it was easily scheduled through the site n only took 2min bc i didn't have any questions for the doc but if id known i had to do one i could have done it a day or two earlier and had it approved n shipped sooner.

Don't get me wrong tho I'm happy to be able to get my hands on some LDN without having to go out to a doctor or do a long televisit

Thank you all for the various advice given, I've save quite a number of specifics from this thread in my notes

Will post any results after I've been taking it for a while

 

[Marylib]

Definitely worth a try. I agree with the advice to start really really low. If you find it messes up your sleep, you can try taking in the morning. Experiment. The really really low low dose is kind of foolproof. You'll know what it does to you without too much of a jolt. If you find benefit, increase it. Some people settle on .5 mg and some go up to 6mg. If I try it again, I'll try to get it compounded in a very low dose. I get frustrated trying to parse out the capsule contents or make it dissolve in water to pull up as much as I want into a syringe. But - whatever works! You'll work it out. I had some really groovy dreams when I was taking it at one point. That was kind of fun.

 

[Marylib]

At one point people were getting it from All Day Chemist without an Rx. So there are options...

 

[Guwop2]

For those whom it has been effective for can I ask what ME/CFS symptoms did it alleviate?

I have no brain fog, or feelings of tiredness, only PEM/inflammation after stress/food/physical activity/mental concentration and am weighing up whether i should try since someone on here crashed badly for a whole year after taking the starter dose of 0.5ml (i'm literally staring at the bottle of LDN that arrived this morning as I write this).