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.



I have news! Very encouraging news! 😀

I don't post here very often because there's usually nothing new to say re: MS and LDN.....but today I have some pretty good evidence that LDN doesn't just make you FEEL better (which is a good thing anyway), it actually WORKS to help stabilize the immune system.

But first a bit of background.....

In case you haven't read any of my earlier posts, I've been on nothing but LDN for my RRMS for over 13 years, and the only time I had a relapse in all that time was during a period when I actually WASN'T on LDN for about a week because of a faxing error between the doctor's office and the out-of-state compounding pharmacy: at the end of that week of no LDN, I got a wicked bad case of labyrithitis (technically I met the criteria for Meniere's Disease) that isn't too bad anymore but for which I still have to take promethazine daily or I get dizzy and nauseated just reading or watching TV....
But other than that, nothing new has happened to me at all during that time MS-wise (well, except I got older), and the symptoms I had in the beginning (memory issues, mild numbness on my left side, heat intolerance, clumsiness, mild swallowing difficulties, etc) didn't get any worse. Of course they didn't go away either, but I never expected them to. Actually, the numbness definitely DID improve quite lot.

I'd been diagnosed in 2003, and treatment-wise, I took Avonex for awhile and later Copaxone, and washed out rather dramatically on both. I literally couldn't afford anything else, and I stopped seeing a neurologist because the last neuro was pretty dogmatic about the need for every MS patient to "find a way" to take whatever was newest (and most obscenely expensive!), or else it meant I didn't care about my health. [Yeah, that was literally said to me!]

So when it seemed that conventional neurology had nothing much to offer, I decided I was done with neurologists for the foreseeable future....which turned out to be about 13 years....

My primary care doc (a freaking SAINT who was also my employer and BFF) prescribed the LDN for me, but in 2009 she retired and the neurotology-focused ENT I'd been seeing for the inner-ear issues took over the LDN prescription, which of course I appreciated a lot.

But last year, in January of 2016, I found out that the  ENT didn't take Medicare (my only insurance) anymore, plus he had some ideas I found pretty sketchy, so at that point things got tricky....where was I going to get my LDN? I was really worried. I had to pay out of pocket to see him that one last time, but at least he was nice enough to give me a whole year's worth of LDN refills, which he prescribed in 3 mg caps for me to take up to 4 of per day, so I could experiment with slightly higher doses (up to 12mg). That gave me 120 caps a month.

I had a third new primary care physician (PCP) because he first one changed his specialty and the second one retired, but she was squeamish about prescribing anything for symptoms that might be MS-related, and I'd asked her about something for nocturnal leg cramps, which of course anyone can get, but mine got worse after I got MS, so she insisted that I see a neuro.

She referred me to a neurologist who had terrifyingly bad online reviews and almost no good ones, so I passed on that bad movie without ever buying a ticket and just kept looking. Then that new PCP, who barely knew me and didn't want to prescribe for me, sent a letter stating she was moving away and that I had to get yet another new PCP, the 4th new one in 7 years. That was fine with me. I found a fourth new PCP, but that one also wanted me to be under the care of a neurologist, so I agreed but she referred me to the exact same lunatic! Apparently that clinic only knows of one neurologist to use for I passed again on that recommendation and kept trying to find a neurologist on my own who sounded open-minded. But I wasn't having much luck....lots of neurologists won't see people with MS at all; even the neurologist who diagnosed me doesn't see MS patients anymore. 

Anyway, as the year's worth of LDN refills was waning, I emailed my old ENT's office in desperation, asking if he knew of ANY doctors who prescribed LDN, preferably neurologists. I got no direct response but noticed that another 6 months of refills had been authorized, so that was super nice of him.

Eventually I DID find an Austin neurologist who had posted some particularly encouraging, open-minded-sounding things online, and from what I saw and read, he seemed reasonable and nice, so I made an appointment and almost got my hopes up. It took months to get in to see him but I finally met him last week. 

As I waited in his reception room, I began to worry; was I going to be judged for NOT having been under a neurologist's care for all those years? I felt like I was showing up for a class I'd been cutting all semester; I hadn't felt that was since I cut about half of my 8:00am Oriental Lit classes in 1970....
(Not really; I probably got a B-)

Well, not only was he a VERY "reasonable", open-minded neurologist and completely non-judgmental, he actually knew and loved my saintly old primary care doctor (that BFF who'd moved away), AND he already prescribed LDN for lots of people!

I was so happy and excited to learn that I had a source for my LDN and a wonderful new neurologist that I completely spaced out asking him for something that might help my leg cramps! Oh well....that'll wait. awesome new neurologist and I discussed my history and symptoms, and he suggested that we get a new MRI of my brain. I hadn't had one since 2005 because I wouldn't have been able to take any different medication no matter what it showed so why bother? He didn't insist at all, just kinda wanted to get a baseline, plus he said he hoped it might show only relatively minimal changes, which would support the use of LDN. So I agreed and it was scheduled; my part only cost $200.

Well, I had the MRI yesterday and the nurse just called with the results. The MRI showed....(are you ready for this?)....... only the most MINIMAL CHANGES....over all those years! I guess on some level I'd been a little worried that, despite the fact that my MS had always seemed  pretty stable to me, maybe my MRI would show a tiny shrunken brain full of spots and scars. See, I was already pretty well disabled before I ever got MS, due to a spinal  injury, and that problem HAS worsened and makes life difficult and painful, but my MS....not so much really. Same challenges it presented in 2003. 
To be fair, I know we can't know for certain what would have happened to me if I'd been on something else, or if I'd been on nothing, because MS is so unpredictable. But statistically it looks very probable that at least in my case, LDN FREAKING WORKS!

I know that when I was diagnosed, I really didn't expect to still be walking at this point at all, since I already used a walker before I ever got MS. 

I knew I was doing better than I'd expected, and now I have an MRI that solidly backs up my perception. I am so happy and so grateful, I just had to share it with you. 

Now it's possible that maybe it is important to be on some of the conventional therapies at first, during the inflammatory phase of RRMS (or maybe not), but later, during what's expected to be the degenerative phase, those meds may not do much except waste a staggering amount of money. Anyway, LDN has been right for me, and I'm SO relieved that I no longer have to worry about how to get it. Maybe a lot of other neurologists have become fans of LDN too in the last decade when I wasn't looking; I sure hope so!

I guess that's it for now. As always, I wish you all the best.


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”?)

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, but eventually went back down to 6mg and I'm holding at that level. But 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....


Low Dose Naltrexone.Org

Hello and Happy July :o)

This is just a quickie to make sure you all know about the original and primary website that deals with LDN, "Low Dose Naltrexone. Org". It may seem a bit flaky around the edges sometimes, but everyone taking LDN, or even thinking of taking it, should visit that site. If you need to know how LDN is made or who invented it or what it can be used for or where to get it, that's where you want to start.

For one thing, it has a great list of 8 pharmacies that have a solid reputation for compounding LDN properly, in a the quick-release form. And all those pharmacies have websites with more information.

But most people will need a grain or two of salt to swallow everything on that site. Just bear in mind that this is one of those sites that is SO enthusiastic about all the various uses that are being tried for LDN that it winds up sounding a bit like a snake oil ad. 
Cures "death"? Wow.
But LDN is NOT snake oil. NOTHING is a panacea, but clinical trials tests with LDN really ARE promising, and it is being tried as a treatment for a lot of things besides MS. For example, people with Crohn's Disease in particular have been show in clinical tests to significantly benefit from LDN, and others tests have shown benefits for other things, but my experience is solely with MS. 

The thing is, the list of diseases and illnesses that LDN is thought to help is silly long, and I worry that over-hyping it will damage its credibility. I guess I'm just anxious for some proof. 

Anyway, Low Dose Naltrexone.Org has been updated fairly recently with a new video, made in Norwegian with English subtitles, but unfortunately, my lame, limited satellite internet connection doesn't allow me to watch videos, so I have no idea whether it's worth your time or not. It's up to you. 

Here's what they say about it:  

"An Eloquent Video, A Must See — April 2015: Norwegian, with English subtitles
"At long last, a most professional, most persuasive video concerning LDN!

"It was made in Norway in 2013, with English subtitles. Far from a sales pitch, it tries to tell an evenhanded story. Its sole omission, which one often finds in Europe, is the total disregard for the role of the late Bernard Bihari, M.D., who discovered the human uses of LDN in 1985. Other than that, it is nearly perfect and a joy to watch. It has led to an avalanche of LDN sales in that country (from a mere 300 users beforehand, it is now used by some 15,000 patients in Norway). 

"Please do not miss watching: Enjoy it!"

That's it for now, just wanted to touch base and make sure you all know about this site.

From Hella Hot Texas, HOORAY for air conditioning! Laters.


Update: Summer Again....and News about an LDN Conference next year

Springtime in Texas was especially beautiful this year, but after a mercifully cool and dramatically wet month of May here in Central Texas, summer is finally and definitely here, so I'm back on my usual hot weather routine....trying not to melt. 
The strategy is simple- basically I stay inside as much as possible. And try not to go nuts.

I used to get out early in the morning and then again after sunset in the summer, so as to avoid the heat of the day, but a relapse of microcolitis has quite literally messed up my early mornings, which is as frustrating as it is unpleasant. The colitis probably has nothing to do with MS, although some consider it to be auto-immune; it's just something else I deal with. Just because you have MS, that doesn't mean other stuff doesn't happen too. My colitis was probably caused by all the anti-inflammatories I've had to take through the years (and STILL have to take), being in chronic pain from a spinal injury and being allergic to opiates, yada yada yada.... 

Anyway, I do get out briefly by about 10am every day if not before, to take sweet Henry for walkies (he walks and I scoot) to go down the hill to check the mail. I take my camera along and get pictures of wildflowers and wildlife if it's not too hot, but after about 15 minutes outside in the heat I start to weaken and melt (and Henry, being a Chow mix, doesn't really like the heat that much either), so it's back inside in front of a fan for me, and back to the couch for Henry. 
I don't know how anyone gets through life without a dog.

Days are SO long this time of really gets a bit tedious waiting for the sun to go down.....kinda makes me feel like a vampire.
I'd like to Be Here Now, but I'm already counting down to October.

This has nothing to do with the season or heat intolerance, but I sometimes wonder what my MS symptoms would amount to completely independent of my back problems. It's often hard to separate it out. (If you haven't read previous posts, I was already pretty well disabled before I ever got MS; I had a walker and everything, but I just hadn't applied for disability.) But I do know that in terms of symptoms and disability, my MS has really been pretty stable for about 10 years. Sometimes it's hard to tell though; my spine is a train wreck and I'm almost 65 years geezerly friends and I are ALL pretty much falling apart one way or the other.  

Speaking of how the MS is going, I was on a Facebook page on MS this morning, and the topic was the importance of a routine head MRI's every year for MS patients. I mentioned that I hadn't had one in several years because I couldn't justify the expense just for the sake of my curiosity, and of course that set off a flurry of concern for my well-being, which was sweet but I instantly regretted chiming in on that page. I don't usually do MS anymore, in terms of where I spend my time online; I'm pretty much all politics and social issues...but I used to spend a lot of time on MS sites in the first year or two after I was diagnosed, especially one called "This is MS, Unbiased". It's just that after awhile hopefully you find your way and it gets pretty repetitive.  

You know what really bugs me about MS sites though? It's the over-the-top, grinning their asses off for no damn reason, borderline DEMENTED feel-good ads for MS meds and MS websites that make it look SO FREAKING AWESOME to have MS.  Everyone looks like they feel perfect, incredibly happy, and surrounded by other smiling happy people. 

Sheeesh! This is the kind of sugar-coated nonsense that could induce a sudden onset of insulin-dependent diabetes. Not one of these pictures EVER depicts an MS patient alone.  Apparently we're supposed to be surrounded by deliriously happy people all the time. How exhausting. And how absurdly unrealistic. NOBODY lives like that. Seriously, those sites must be put together by the same minds that create soft drink ads or Jet-ski commercials. 

I'm still on 4.5 mg of LDN at bedtime, and really nothing else specifically for my RRMS. I honestly have no way of guessing whether I'd be doing significantly better or worse without the LDN, but I assume I'm stable partly because of it. I know that if I'd been spending thousands per month on conventional therapies all these years, I would have thought my lack of progression was due to THAT treatment. You really HAVE to try to believe in what you're taking if literally thousands of dollars are being spent on it every month, whether it's your money or insurance company's money or government money; its a LOT of money and you have to do more than just hope it's working. 

Hey, there's an LDN Conference coming up in Orlando in February. I don't have the means to travel and I don't know a lot about it, but maybe some of you can go. Here's what they sent me: 

Early Bird Offer ($220) - Huge Saving Opportunity
21 Confirmed Speakers  You are one of the very lucky ones. You have the opportunity to purchase your LDN 2016 Orlando Conference ticket for
just $220!
BONUS 1 - You will also receive 12.5 CE credits for your attendance.
BONUS 2 - You will save $60 on the full ticket price
BONUS 3 - You will be able to view all conference presentations online after the event
Please note: These discounted tickets are very much on a first come first serve basis so if you intend on joining the discussion in Orlando please take advantage now.
Our mailing address is:
LDN Research Trust
Norwich, Norfolk NR10 5WY
United Kingdom

When asked via email whether or not I'd be attending, I replied that I couldn't, unfortunately. 

I was told very cheerfully that I could still watch it heart always drops a bit when I hear that phrase "you can always watch it online", because out here a mere half hour from Austin, Texas, we still have no option but a satellite connection that is both VERY limited and expensive, and unfortunately we can't watch streaming stuff online if it's longer than about 3 minutes. (Yeah, for 2015 this kinda sucks. But I've got air-conditioning so honestly, no worries.)

Anyway, I briefly explained my lack of sufficient internet for streaming data and asked if they planned to make a transcript available afterward, but I never got an answer, so I guess not.

Well, that's about it. I just wanted to check in so people wouldn't imagine that my silence means I'm dead or something. Take care and good luck with the summer heat if you're in the northern hemisphere. Laters!


Some Things are WAY Worse Than MS....

I've had memory "issues" since months before my MS diagnosis. In fact, that's what motivated me to seek a diagnosis in the first place. I'd been working as a Medical Coder in a doctor's office and couldn't remember a common diagnosis code I'd known from memory and used many times daily for YEARS, but suddenly I couldn't remember the order the numbers came in and had to look it up. I looked it up, closed the chart, and asked for a head scan. And got it...

The thing is, my memory isn't any worse than it was 12 years ago, and I've learned some little tricks to compensate for my limitations. And I voluntarily stopped driving years ago because I knew that a person who cannot multitask at all should certainly NOT be driving.

Well, I thought I had problems but I've decided I'm perfectly FINE after all, or at least relatively fine anyway.

What changed my outlook?

Last weekend I called a dear old friend from college who has been dealing with early-onset Alzheimer's Disease for along time. We live in different cities and neither  of us drives anymore so it's been several years since we've actually seen each other in person, so we have to be satisfied with a phone call every few months.

For the last several years my friend has tended to repeat herself at times, but otherwise there was never anything really noticeably wrong with her.

Well....things have evidently changed in the last few months. She still sounded very much like her old self, but when I was chatting about our new rescue dog "Henry", I naturally asked her if her family still has a dog (or any other pet), and there was this long pause......

Our Sweet, Happy "Henry" :o)
 I thought, "Oh dear. Their dog must have died recently and she's trying to compose herself before answering..."  But no, it turns out she was just trying to figure out the answer to my question! She didn't know! OMG, she didn't know whether or not she had a dog! I quickly said "Oh it's OK, it doesn't matter" but honestly I felt like crying. Her husband had warned me that "things have changed", but I had no idea....

My point in posting this depressing item is to remind myself and everyone else that there are a lot of things much worse than MS, and that my memory problems are relatively minor compared to the devastation my friend's brain has endured, and that I will NEVER complain again about my puny little cognitive issues.

I will be (1) counting my blessings and (2) calling my friend at least monthly from now on.  Life is short. Now I'm going to dry my tears and play with Henry.


When I'm 64... Dealing with Temporarily Decreased Mobility

Today the weather is absolutely PERFECT....
If you can have the windows open and be comfortable, it's PERFECT as far as I'm concerned... it's my birthday....

.....but I'm basically stuck inside waiting for new tires to arrive from Monster Scooter.
I think they'll be here Tuesday or Wednesday. I know, this is a temporary setback, but I don't have a whole lot going on in my little life and it feels like all the wind just left my sails completely and I'm stuck languishing in a dead calm. I want SO much to go outside!

But the fact is that my slightly-used, heavy-duty Pride XL mobility scooter simply wasn't built for our rocky driveway. So I'm pretty hard on tires and tubes, and solid tires or foam-filled tires aren't an option on this model. But fortunately I enjoy live-in tech-support,  so it was just matter of scraping up the $100+ for two new tires. Which was not easy. At all. But poverty is another blog for another blogger.

I think that if you can venture out of bed at all, even using a mobility device, then you have at least some mobility. Personally my mobility depends on use of a walker inside the house and a mobility scooter outside. So obviously I'm mobility-impaired, but at least I had my trusty scooter :o(

My current scooter, a used Pride Pursuit XL, sidelined by an unfixably-flat tire :o(

I love my scooter. I really do. There are a lot of things I can't do anymore and a lot of places I'll never see, partly due to MS, partly due to my collapsed spine, and largely due to a complete lack of wherewithal, but my scooter at least allows to get out of the house and enjoy the outdoors, which prevents cabin fever.

On my scooter, I can go out and see the wildflowers in the daytime or recline the seat and watch the stars or the moon rise at night...all while safely and comfortably seated on my trusty scooter.
This is my previous scooter, a Merits Road King S148, dead of a broken axle :o(

Of course I loved the scooter I had before this one, until its axle broke, rendering it useless. (Yes, I did realize that a machine shop would probably be able to make a new axle for me, for the right amount of money, but my tech-support dude and I decided that the other axle might logically be pretty close to cracking too, so it was time to look for another scooter. Come on Craigslist!)

I even loved the scooter I had before that last one; my first scooter, now quite obsolete, came from Costco at a bargain and I loved it until it developed fatal electrical problems that could not be overcome since the company that made it was out of business.

Sudden and increased immobility always makes me appreciate the limited mobility I'd temporarily lost. Yeah, I not only appreciate my mobility, I NEED my mobility, or I'm just not a very happy camper. More like on house arrest, and what did I do anyway?

My life was pretty small and didn't involve very much, but it was pleasant. Up until this past Thursday, these were the happiest parts of my daily life, the things I looked forward to every day... 

At least 3 or 4 times a day, I took "Henry", our rescue dog, out for for walks on the 10 acres where we live in the Texas Hill Country. Obviously Henry walked while I scooted.
On the first walk of the day, we'd go all the way down to the bottom of our 1/4 mile long road (driveway), carefully cross the farm-to-market road we live on, and get the mail out of the mailbox and bring it up the hill. 

While out on these walks, I usually took photographs of the wildflowers, wildlife, etc.
 We finally got a couple of decent rains, so it's getting kinda pretty out here again, after a brutally dry summer.
I also enjoyed tending to my elevated gardens from the seat of my scooter.

But that's all now on the shoulder of trusty Tech Support, my son and caretaker. Now HE gets to walk Henry and get the mail and tend the gardens, but he doesn't notice the wildflowers much and never takes pictures, but oh well. In a few days when my scooter has tires again, I'm gonna be SO back out there!