First the Basics: LDN 101

"LDN" (low dose naltrexone) is an "alternative" medication used with surprising success in treating immune disorders, both autoimmune and immune deficient. Taken orally at bedtime, LDN works by briefly blocking opiate receptors, thereby "tricking" the body into increasing endorphin production. Endorphins being a central part of the immune system, increasing their production has been shown to help correct immune defects.


NQSLDN* or “Back to Awesomeness on a Higher Dose of LDN”

I’ve been experimenting with the dosage of my LDN. Or at least, my DOCTOR AND I have been experimenting with a higher dose of LDN. (*Maybe I should start calling it “NQLDN” for “Not Quite So Low Dose Naltrexone”? Nah, that I don't see that catching on.)

When I first got on LDN, I’d been dealing with chronic pain from a back injury for years, and the effects of LDN on EVERYTHING were strongly positive and undeniably real, even the back pain; I just felt SO much better. Specifically, I had less pain and stiffness, I could walk practically perfectly, I could think and speak more clearly, I never got overwhelmed- EVERYTHING was MUCH improved and life was much easier. The fact that my back problems were vastly better was unexpected and really for me it was the best part. I’d lost 3 inches in height so my spinal issues were still significant, but better.

Well, I don’t remember exactly how long it was (a year or so?) before my back was worse and eventually I just wasn’t feeling quite that “awesome” anymore. The basic problem was constant, exhausting back pain and discomfort, which kept me from sleeping more than two or three very interrupted hours a night no matter what I did or what I took, and there's kind of a domino effect when you never sleep......

NOT a neat domino effect....
but a BAD domino effect

For awhile, LDN had helped with all that pain but as my back problems got worse, I guess the LDN just wasn’t enough anymore, so for the last few years I’ve been struggling with chronic pain and resultant sleep deprivation, which naturally has taken its toll on me. Plus I’m 65, tired and unfocused from sleep deprivation and before I knew it I realized I found I was resigned to just playing defense and I’d been playing it for years. Kinda grim.

But my MS symptoms were and still are VERY stable, so of course I kept taking my LDN for years beyond that initial awesome period. Like anyone with MS, I have no way of guessing what would have happened to me if I’d chosen another treatment path, or NO treatment, but I’ve probably had MS for about 14 or 15 years now and I’m no worse off now than I was in 2003 when I was diagnosed. As long as I’ve been on LDN I haven’t developed any new symptoms. So for me, that’s enough. I still have zero interest in taking anything else.

But a few months ago I started wondering about things…..after being resigned for years to not never feeling any better, all of a sudden I was questioning WHY I’d settled for semi-muted misery so easily. I was feeling like I’d given up perhaps prematurely, I’d accepted my situation too easily and all of a sudden I felt like fighting. Or maybe not FIGHTING exactly but at least like TRYING something new. I wanted to try to feel better again. I have chronic pain, I can’t take opiates so I never freaking SLEEP, and I knew I needed a better quality of life than this if at all possible.

So I wondered whether maybe I could recapture the initial awesomeness I’d experienced on LDN with a larger dose. Could it be that simple? I mean, who knows? That’s one of the frustrating things about taking LDN; it’s not mainstream enough to have an accessible body of data on what happens at various dosages and protocols.

Anyway, one day when I was pondering it, Larry Frieders, the pharmacist at The Compounder Pharmacy in Aurora, Illinois whose always made my LDN, published an article in his January 2016 newsletter called “What Would Happen If I Took Two LDN Capsules?” 
Larry Frieders RPh, MBA, MA
What indeed! Just what I’d been wondering and really the validation I needed. I SHOULD question the dosage. Who says Low Dose Naltrexone has to be so  LOW?

So I asked for an appointment with my doctor, and miracle of miracles there’d been a cancellation for the very next week, so I went in and asked him about upping the dosage and he was FINE with it! In fact he was enthusiastic about trying a higher dosage than the 4.5 mg nightly I’d been on for about 12 years; I’d asked about maybe taking twice that. After some discussion he wrote me a prescription for up to four 3 mg capsules nightly, for flexibility of dosing. So up to 12 mg a night. Kickass!

I sent off the new script to Larry and waited, but while I was waiting I went ahead and tried taking two 4.5 mg LDN’s at once at bedtime.

OMG it was freaking awesome!  9mg at bedtime and I was SO much better the next day. Standing straighter, walking better, THINKING and FOCUSING more easily and clearly, just feeling SO MUCH BETTER! And of course WAY less back pain. Not perfect but SO MUCH BETTER.

Just to be a good patient, I went back to the 4.5 mg protocol for the time it took until the new bottle of 3mg LDN arrived, which only took two days after they got my Rx in the mail.

I first started on 6 mg nightly for a few nights, but I wasn’t real sure it was making much of a difference. I mean, it was a little improvement, I was pretty sure about that, but not quite what I was hoping for. Maybe I should have been more patient and stuck at 6mg for a couple of weeks, but dammit life is short and I wanted to feel better. So I upped it to 9 mg nightly, and I am delighted to report that I’m feeling AWESOME again!

I plan to stick with 9mg nightly as long as it feels right, and I’m updating my doc as requested; he wanted me to let him know if it was worth a try, so he'd know whether to consider larger doses on some of his other patients who take LDN.

I’ll let you know how this progresses but unless you hear differently assume I’m still on 9mg of “NQSLDN” at bedtime, and that I’m still feeling the awesomeness.


UPDATE: Well, the super duper awesomeness of a higher dose kinda faded. I moved up to 12 mg and took that for awhile, then went back down to 6mg and held at that level for awhile before deciding that 9mg nightly is my sweet spot. I've been on 9mg steadily for over a year for over a year.

And I DO have recent evidence that taking LDN has kept my MS stable, in the form of an MRI done just yesterday showing only the most MINIMAL changes over all these years! Read my next blog post....

1 comment:

SammyJo Wilkinson said...

Hi Flora, Thanks for the kind words about my LDN efforts! Thanks for sharing your experiences with LDN.