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.


How to get a prescription for LDN

LDN is a prescription item. People email me and message me from time to time, asking how I got my LDN and where they too might acquire a prescription for some. I might have some POSSIBLE resources, but certainly can’t guarantee anything. 
Anyway, I thought I’d just post what I know here so folks can see it for themselves and not have to wait for a response from me each time.
 I initially got my LDN prescription from my family doctor, a veritable SAINT in whose office I had been working for years before my diagnosis. In addition, she and I were (and still are) good friends, so naturally she knew me MUCH better than she knew most of her patients. The point being that she knew she could trust me with responsibility more than she might risk trusting an average patient.  
She finally prescribed LDN for me, but only after I first researched and printed up concise, credible info on LDN for her. And after I gave her plenty of time to look through it. I suggest you do this too, at least for your doctors. Your concerned friends and family members might want some info too.
Obviously physicians already know all about Naltrexone itself, but most have never even heard of a protocol that uses such minute doses as 3mg or 4.5 mg. My doc knew I was (and am) literally allergic to all opiates, so there was no possible risk of untoward interactions since I wouldn’t EVER be taking any opiates.
She was also aware that I was NOT open to trying any more of the conventional medications, after nightmarish experiences with both Interferon and Copaxone.  So whether she prescribed LDN for me or not, I wouldn’t be taking anything else for MS, therefore her providing it would not keep me from trying something more conventional.
See, many doctors are understandably concerned about prescribing or OK’ing alternative medications and therapies for things like MS because they don’t want to enable you to avoid taking something that standard medical practice would assume might be more effective.
Basically, my doctor agreed that taking LDN would be harmless to me at the very least, so she wrote the prescription and I was set. Since I saw her every day at work, SHE saw how much better I felt, and was quickly an LDN fan.
Unfortunately, a couple of years later, she moved hundreds of miles across Texas :o( and I had to look elsewhere for someone to write my LDN prescription. At that point, my otoneurologist took over. I’d been seeing him for years for my chronic labyrinthitis, and fortunately he was open to alternative treatments. Plus he wasn’t being asked to START me on LDN because I’d been on it for years; he was just picking up the prescribing chores from my departed family doc, and he was glad to do it.
Unfortunately I can’t refer everyone to him, because he is already so outrageously busy that it takes from 6 months to almost a year to get an appointment, maybe longer for a new patient appointment. And no, he does NOT do phone consults. so what to do?
I strongly suggest that you try to get your own doctor acquainted with LDN and see if you can’t get him or her to let you try it. Get the information together in a concise way and at least TRY.
No dice? OK, here are some suggestions; I sincerely hope something works for you. If you have luck getting someone to prescribe LDN for you, would you please let me know? Thanks!
First, check out the following link from The Compounder Pharmacy in Aurora, Illinois. They compound my LDN, and have some resources that hopefully will link you to some doctors who prescribe LDN. They've always been very nice and very efficient.
Next, try a link to the LDN Research Trust; whose motto is “Committed to trials of LDN as a treatment for autoimmune diseases". Sounds good, huh? I don’t know if it’s up to date, but their website says has a list of LDN-prescribing doctors around the world. It's a short list and a big world, so you see the odds. Still, maybe worth a try. Like I said, I have NO IDEA whether the list is even remotely current or at all helpful, so please don't get your hopes up too far, but give it a try.
Finally,  here's list of recommended pharmacies that have a good track record of compounding LDN properly. They really all OUGHT to know of doctors who prescribe LDN, and some of these docs might even do phone consults, but those consults might cost a small fortune… hopefully not.

Pharmacies that are known to be 

reliable compounders of LDN:

Irmat Pharmacy, New York, NY
Belmar Pharmacy, Lakewood, CO
The Compounder Pharmacy, Aurora, IL
The Pharmacy Shop and
Compounding Center, Canandaigua, NY
McGuff Compounding Pharmacy,
Santa Ana, CA
(714) 438-0536
(877) 444-1133
(877) 444-1155
Skip's Pharmacy, Boca Raton, FL
(561) 218-0111
(800) 553-7429
(561) 218-8873
Smith's Pharmacy, Toronto, Canada
(416) 488-2600
(800) 361-6624
(416) 484-8855
Dickson Chemist, Glasgow, Scotland

Locating a doctor who will prescribe LDN, or any alternative therapy, might be a complex and frustrating search. PLEASE try your best to keep your sense of humor and be patient. I think you'll find someone to help you if you HANG IN THERE. 




Leaving My Comfort Zone- 1st Vacation in 8 Years!

UPDATE: It was freaking AWESOME!

I went to the beach and played (carefully) in the surf, but only in the early mornings because it was way too hot later in the day; the heat index got up to 100 every day by noon. 

I went to the old kite shop and bought a couple of little souvenirs, but didn't actually fly any kites on this trip because it was just too hot; pretty much the whole time I was on the beach, I was in the water. 

And speaking of the water, I didn't go out as far in the water as I used to; only to about waist depth this time, because I could feel my relative weakness against the waves and didn't care to drown.

The only negative symptom I experienced at all was a case of exceptionally bad leg cramps the first afternoon from that first morning in the surf, but after resting my legs on soft pillows in the air conditioning for a few hours they were fine. 
Beaucoup de seaweed, but ZERO jellyfish or man-o-wars.
"Shells Seafood and Pasta"; only 9 tables in this little gem- wonderful food!
Virginia's on the Bay, open air dining on porches right by the water; comfortable enough thanks to ceiling fans. Lovely food!
We ate several wonderful meals of fresh seafood in great restaurants and just generally enjoyed the coast. I'll definitely go back, but never again in the heat of summer- next time maybe October or April.
My last time on the beach at Port A, 2005.

Well, it's summertime here in Texas again, and in the spirit of making lemonade out of the considerable tonnage of lemons dumped on me by the heat, I'm psyching myself up for an actual, spend-the-night-away-from-home vacation!
This is a HUGE big deal for me; I haven't been anywhere other than day trips to San Antonio since 2005, largely due to complex logistical challenges coupled with a general lack of wherewithal, but also due to waning self-confidence. 
Venture out of the Comfort Zone.
But a few weeks ago, in an unexpected moment of clarity, I suddenly realized how small I've let my comfort zone become, and while there are plenty of valid reasons and excuses for it, I had to admit that in many cases I've simply been giving up too easily. I used to be pretty fearless, but as an MS patient, avoiding stress has become a natural reflex, and I've become very comfortable in my tiny routine. The result is that I don't attempt much anymore and just don't fully live, which is a waste and stupid.

In my state of resignation I guess I never really expected to travel again, although I hadn't thought much about it. For the last few years, I've only left home (I don't mean the house, I mean the property) two or three times a week, and 99% of the time that's to go to the grocery store in the closest town; a pleasant errand but kinda pathetic for that to be the highpoint of the week when you really think about it.  
Anyway, just as I was pondering the need to reverse the shrinkage of my comfort zone, I was invited out of it by my little brother Billy, and this time by golly I'm driving right on out of my comfort zone! On more than one occasion years ago I planned (but eventually cancelled) this same trip, but this time dammit I'm seriously gonna go. 
Sunrise over the Gulf
Specifically, we're going to my favorite place on the Texas coast, Port Aransas, for a few days in late June. I'll be meeting brother Billy there. Throughout childhood we went to Port A at least twice a summer. 

Little brother Billy is an active "youngster" of 60, a sweet and gracious man who will hopefully be joyously celebrating the San Antonio Spurs victory over the Miami Heat by then. I'm a Spurs fan too but Billy's a serious enough fan to hold season tickets so obviously we scheduled our trip for right after the finals.
I'll be taking my rolling walker along, which has big tires that ought to semi-function on the beach, at least well enough to get me from the car to a spot on the sand; it has a big pouch and a basket, which I'll use for sunscreen and other supplies, and any seashells I might find. Mostly I just like to sit on the beach, but I plan to take a tape recorder along so I can record the sounds of the waves and the sea gulls. I'll take a lot of pictures too and I'm sure I'll eventually go in the water:o). I get seasick easily so I keep off rafts. 
My kites soaring over the beach, back in the day...
Awesome kites; the place always used to smell like patchouli:)
I used to fly kites on the beach because there's always a breeze, and I had a nice collection, but I gave them all away a few years ago when I was feeling defeated. Maybe I'll get a new kite and fly it.
And of course there will be the wonderful feasting on plentiful, fresh seafood, not so easily found inland.
This time, and hopefully in general, I'm not letting myself entertain doubts or concerns; I know I have "issues" and some things will be tricky, but I'm just gonna go for it while I still can.
Wish me luck!

Oh, and, for the record, I'm still taking LDN for my MS, 4.5 mg nightly as always, and have no plans to ever switch or to add anything pharmaceutical. I believe LDN has helped keep my immune system more stable than the conventional meds would have, but of course there's no real way to know. If I ever do change or abandon my LDN protocol, or if for some reason I simply can't get it and have to stop taking it, I'll announce it. So basically always assume I'm still on LDN and am still an advocate for LDN for MS. 


Update and Cannabis

Just an update, although there's really not a lot to report. In a nutshell, I'm about the same. Just older (62) and tireder. 
My pal Cindy sent this card for my last birthday; it still cracks me up!
I was diagnosed with MS in 2003, ten years ago this summer. I still don't have progressive MS, and am not much worse than I was 10 years ago. I developed chronic labyrinthitis during a period when I wasn't on LDN; I had been on it but ran out and couldn't get it refilled due to a fax problem at my doctor's office, and that was the first new symptom that came up since diagnosis.
What's next?
I wouldn't try to guess what to expect in the future, but I assumed MS would have me more screwed up by now. I mean, I never really thought forward about potential new disabilities, but if I had, I would have expected a good bit more drama than I've dealt with so far. I'm really not doing too badly at all. If my spine wasn't collapsed like a freaking train wreck, I'd be WAY closer to fine. As it is, I'm hanging in there, still enjoying my life but in a mild kinda way, and don't really think that much about MS.

I have the same general MS symptoms I've had for years; memory problems (including an almost total inability to multi-task), difficulty walking distances without support, chronic (but now very mild) labyrithitis, and nocturnal leg cramps, the latter of which might or might not be from MS. 

I take K+ and Magnesium for the leg cramps and sometimes a common ancient herbal remedy and I do fine, at least, as long as my lower legs don't get too cool; a heating pad or hot water bottle on cold nights does the trick. I have really bad insomnia anyway, so controlling the leg craps and spasms has been essential.

Treatment-wise, I'm still on LDN and nothing else just for MS, still getting it from The Compounder Pharmacy in Aurora Illinois. I take a few OTC  things which I'm  now getting from for MS symptoms like urinary retention; I've been taking 2 capsules of D-mannose twice a day for  a few years now, at the suggestions of both my dear old Family Doc as well as a urologist I consulted once. D-mannose prevents urinary tract infections- it works perfectly for me.

I also take one 25mg promethazine tablet, a cheap generic prescription item, every morning for nausea, which comes with my chronic labyrinthitis.  And that helpful herb, when I'm lucky enough to find some.

By the way, I'm not recommending all this stuff, I'm just telling you what I'm currently taking. 
My dizziness and nausea are very minor compared to the acute stage, but I do get terribly motion sick in anything that moves. I can't even ride in a scooter in a grocery store because looking at stuff on shelves as I move long makes me sick, quick! But that goes back to childhood for me. 

To be clear, some of my mobility issues are due to a spinal injury that has nothing to do with MS; my back problems predate the MS by years; I already had a walker and a small collection of canes before my first MS symptom. And some of the symptoms overlap, like numbness in the legs and weakness; severe multilevel spinal stenosis had already caused that so I don't know if MS is adding to it or not involved at all. 
MS sucks, but other things, like spinal stenosis, suck pretty hard too.
 Almost 15 years after the initial injury and my spine isn't any better, so naturally I have some issues getting around. But the MS does cause me to walk kinda funny on top of the spinal stenosis neuropathies; my back injury prevents my from straightening up fully when standing, but MS makes me walk funny. Slightly. I don't know how else to explain it
Not Ministry-of-Silly-Walks funny, but my gait definitely isn't normal anymore.

However, I'm still walking, just not very far because of increasing back pain and numbness when I stand, and I don't walk unaided except around the house. 

MS makes it more likely I'll stumble, and my inner ear problems make it less likely I'll be able to recover my balance in time to prevent a fall, so I did fall twice this past year. I'm old enough that falling down is kind of a big deal. In fact, I'm still sore from falling last March, a solid year ago; I tripped over my own feet and landed on my side with my arm extended, so basically I landed on my armpit, and managed to hurt both shoulders. Oh well, live and learn. I pitched out the ill-fitting slippers I was wearing that contributed to my second fall and I just move more carefully. 

To that end, I use my walker a lot more. It's a 3-wheeled walker with a big pouch and a basket. I've had it since 1999. I can cruise around the larger expanses in my house pretty easily using the walker; I feel safer and move faster and more efficiently with it, even though I don't need it for short distances. It's just easier with it, as long as there's room for it to pass. It has lovely big tires that can take bumps and uneven surfaces really smoothly and safely.

So far I can still manage to walk through a grocery store or Home Depot if I use the cart like a walker; as I walk, I'm leaning heavily on my forearms on the cart handle. I have to move through the store pretty quickly, to reduce the amount of time I'm upright and therefore the amount of back pain. Unfortunately, I can't use a scooter in a store because looking at merchandise on the shelves while moving forward makes me very motion sick; but that's not just an MS thing;  I've been prone to motion sickness all my life.
Cannabis as illustrated in Köhler's Medicinal Plants book [1897], courtesy Wikipedia.
Cannabis also helps many of us with MS as well as people with chronic pain symptoms, by reducing pain, stiffness and cramps, and taking the edge off dizziness and nausea. 

It doesn't always help everyone, but in general, marijuana can help you sleep, it can help you relax, it can sometimes help you focus; marijuana can help so many things but again, it doesn't effect everyone the same way. It can make some people temporarily but miserably paranoid, it definitely messes with your short-term memory, and absolutely should NOT be used before driving because it can impair judgment.  
  Unfortunately, I don't live in a State with legal medical marijuana and can't possibly afford to relocate to a place that does. I am stuck here in dumbass red Texas, where there will probably NEVER be approval of medical marijuana! Heck, we're lucky to get to just walk around in public without a special permit here. 

Sorry to vent, but it's just so frustrating. I'm expected to either just suffer or be a criminal, a perfectly ridiculous position for a nice, peaceful 62-year-old disabled lady to be in. I don't want to be a criminal; I just want to be able to buy and take my freaking medicine without spending a fortune and without risking prison!

Doctors used to prescribe this all the time
The fact is, cannabis has been used legitimately as medicine for over 2,700 years; it only hasn't been considered medicine for about the last 75, thanks largely to competing financial interests, NOT health concerns. [Google "William Randolph Hearst and marijuana prohibition" and you'll get a perspective on why it was prohibited in the first place.]  

Fortunately, some states are moving back toward a more sane approach to marijuana use, but, not surprisingly, NOT Texas.  Heck, Texas is moving backwards so fast we'll soon be required to teach an alternative to the "theory" of a heliocentric Universe...
From my 9th great-grandfather, Sir Thomas Digges' book, "Sonne" in the middle, see?

So what specifically is pot supposed to do for MS, medically? Well, for me it has eased pain and spasticity and has helped greatly with depression, anxiety, and insomnia. The major downside is financial, because the prohibition makes it very hard to get and silly expensive. 

That's about it, enough redundant rambling. If you don't see new posts for awhile, assume I'm status quo :o)


Cool is cool

I gripe a lot about heat intolerance, a symptom shared by the vast majority of MS patients, and especially about the unprecedented heat and drought we've been dealing with here in Texas. It's a really big deal for people with and without MS. Time Magazine says that "Texas' drought may have global effects".

Anyway, I just wanted to say that FINALLY it's eased up. We broke all kinds of records but it hasn't been over 100 degrees F for over 2 weeks. Whew! Some days we don't even hit 90. 

It even rained. (Once.) 

So I'm cool now too. I can go outside and sit. I can think more clearly. I have choices. I can do errands and not have to return to an oven-on-wheels. I'm not stuck inside like a salad in the fridge. I feel so much better.
StaCool Vests

FYI, if you are sidelined by heat intolerance, there is personal cooling equipment available (vests, wrist and ankle wraps, etc) available to MS patients. They say that wearing a cooling vest can enable a heat-intolerant person to participate in aerobics or outdoor activities involving exertion. Check with the MS Association of America; or you can call the M.S.A.A. at 800-532-7667 for information. 

There are also numerous for-profit private businesses, like StaCool, offering self-cooling products, private-pay. Just Google "cooling vest for multiple sclerosis".  

Personally, I use ice packs, or just plain old ice in a bag. But the vest would probably be better. Somebody try one out and let me know, OK?


On MS and Memory Issues [or, OMG I Forgot To Reorder My LDN!]

I try to keep up with things, I really do. I hate screwing up. Carelessness pisses me off whether it's in me or in others. I especially hate wasting other people's time and resources by messing up and forgetting something- that's the worst.  

I know, we all blow it from time-to-time. But for about 10 years now I've been busily forgetting things roughly from the time I wake up until the time I fall asleep. Which makes me feel like a total screw-up, but I try to remember to forgive myself each time I mess up, although it's hard and not always possible if I've blown it badly. But at least I resolve not to repeat the same mistake again if I can possibly help it.

Meanwhile, I make these over-the-top memos for myself- obsessively well-formatted signs and notes, usually illustrated to some extent, and sometimes I even laminate the silly things! But I still sometimes forget to look at them.
One of my silly laminated reminder signs- helps out on watering day
Posted on a sliding glass door, to remind me not to let Claude the Blue Lacy (my dog) out while thirsty wild critters are visiting
I used to rely heavily on my cell phone's alarm feature for reminders, but unfortunately the alarm stopped working reliably months ago, so that's that until next year when I'm eligible for a new phone. Which brings up another issue I've been wondering about; am I smart enough for a Smart Phone? Well, maybe. Just barely. I have to admit I dread learning how to use tricky new fact, I avoid it; way less stress. I know, it sounds lazy, but you know what they say; no pain, no pain.

See, my memory trouble usually arises when I try to hold a simple thought or plan in the back of my mind while I attempt to do (or just think about) something else

It's really just simple, two-layer multi-tasking, which was never a problem for me before MS. But trying to hold a thought in my leaky brain now while focusing even temporarily on something else hardly ever works, and I guess I've adapted to it by not attempting it if I have a choice. And luckily, most of the time I can still manage to recall in time that I'll probably never keep things straight if I try to do more than one thing at a time....

So what to do?

Well, my first line of defense when I realize my brain is getting overwhelmed is to stop everything and focus on just the most important thing, whatever that is at the time. (Usually simply updating my calendar takes care of it.) The rule here is relax and take one thing at a time. And above all, I don't let myself get stressed. Keeping things loose, light and easy has become the most normal, natural response for me. Life's tricky enough without riding your own back all the time, right?
Don't get stressed; keep it light
After all,  I'm not on a deadline-I can afford to take a break and resume whatever it was when my head clears.

The commonest multi-tasking situation that arises in my life these days that gets me overwhelmed is on

So far I've got almost 15,000 people dangling on my family tree, going back past Saint Constantine, Emperor of the Roman Empire (my 43rd great grandfather), and I've got 17 other, much less complicated  trees working as well. This genealogy stuff really interests me and is a perfect challenge; for one thing, I learn a LOT of stuff. 

But connecting one family tree to another on that site involves multi-tasking on a level that would have been a challenge even before I got MS, so I've found it best to work on this stuff a little at a time. More importantly, I've learned to let it go gracefully as soon as it gets too complicated. Just let it go. When I get stuck like that, typically I have several Windows open at once with info I'm trying to compare and consolidate.

Inevitably there's a point where there are more levels than I can even see at once, if you know what I mean, and I almost feel something shorting out in my head. Not literally, but that's when I know I've tried to go in too many directions at once and have, understandably, lost my which point I just close everything and take a break. Maybe I play a bit of Tetris or something; pretty much anything off the site. As long as I avoid anything that demands complex multi-tasking for awhile. 

In circumstances when I have to manage to juggle two things at once,  I employ what I guess you'd call a "memo-mantra", sort of a chant I literally mutter to myself unceasingly ("the water's running, the water's running, the water's running, the water's running") until I can, you know, turn off the water or whatever. 

It's like the back of my mind has this very steep, slippery shelf off of which things always tend to roll... off into a void. I have to work hard to hold that extra thought on the shelf and it doesn't always work. Usually I find it best not to attempt multi-tasking in the first place. Like I said before, one thing at a time.

Along with my inability to multi-task, I also noticed (starting almost 10 years ago) that I'd become a klutz; all I've really figured out to do about that is to move very slowly and deliberately so as to avoid wrecking things. It doesn't always work by a long shot, but it's all I got.

And OMG the most frustrating thing is that I lose things all the freaking time!  I spend a huge amount of my time looking for stuff that I swear I just freaking had!  It's maddening! 

And I'm always forgetting what I was saying, which is just more multi-tasking FAIL.

I often wish my life had TiVo, so I could push a button and go back to find out what the heck I just thought of and so quickly forgot. (Uh, what was I just saying? Crap. I know it was important...oh well...)

In fact, memory problems were the main thing that motivated me to get a head scan in the first place, the results of which led to my MS diagnosis. 

I was doing medical coding in a family doctor's office when all of a sudden I found I couldn't remember the code for hypercholesterolemia (it's 272.0), an ICD-9 code I'd used countless times every blessed working day for years, but all of a sudden I couldn't think of it. 

I felt so  freaking stupid.

I was pretty sure about the numbers involved (I thought there was a "7", a "2", and a "0", with a decimal point after 3 digits and then one of those numbers repeated after the decimal), but I had no idea about the order of the digits. 

Finally I actually had to look it up, which was on par with forgetting how to spell my own name. It was, "OK, I want a head scan and I want it now!"

Anyway, if all else fails, a sense of humor helps immeasurably as your marbles slowly roll under the fridge where you'll probably never be able to find them again....

My most recent screw-up involves my LDN. I was taking my bedtime meds night before last when I came across a little card in the slot that said "Need LDN".

Shitshitshit! I was supposed to order a refill on the 1st when I got my check, but I totally spaced it out. (Insert more cursing...)  

Obviously I should have thought to put that little "Need LDN" reminder card in a slot that I would have seen several days before I ran out, in time to get a refill, instead of on the night when I'd be out already. Oh well, another lesson learned.

Anyway, as of two nights ago, I've been off LDN because I'm out, and I won't have any to take until at least Thursday or Friday, maybe later. The compounding pharmacy I use is closed until tomorrow because today is Labor Day. They'll send it (Priority Mail) because Aurora Illinois is too far from Austin Texas for a routine road trip to pick up a refill....(duh) 

Well, hopefully my immune system won't notice the oversight. (Ha! Good luck with that, right?) 

The only other time I couldn't get my LDN for a week or so was back in '05, and I wound up with an exacerbation involving a world-class case of labyrinthitis. I literally had to hold my eyeballs still with my fingers! I was left with chronic dizziness. 

I'm hoping this week's brain fart won't lead to any permanent drama; meanwhile all I can think of to make more endorphins while I await the refill is to exercise- so I'll go to the gym later to work out....if I can remember to go...

Oh crap, I just realized that they're closed for Labor Day too! (Insert more superfluous cursing referencing feces)

Oh, and speaking of meds (well, I was, remember)....obviously it's important to remember to take them, and I have to remember to take a small handful of meds and supplements twice daily. So I've found that the simplest, surest way is to set up two weeks' worth of my meds at a time,  which I store in two clearly and heavily labeled, slotted trays; one tray for morning, the other for bedtime. 

This is not a foolproof system, but at the very least I can say that every screw-up has led to a new innovation and fewer mistakes afterward. 

For example, I found it helpful to make little cards with the days of the week on them to put into each little slot, so I can tell at a glance whether or not I've taken my meds yet; otherwise I have no idea. None.
Bedtime Med Tray
Inside the bedtime med tray
Morning med tray
Inside my morning med tray
I've shared all this silly minutiae not because I imagine it's interesting to anyone, but in case you're dealing with similar issues. At least know that  you're not alone if it's any consolation, and that there are ways to manage things if you try. Hang in there, and hey, if nothing else, work on developing that sense of humor!

Sometimes in life, whether you have MS or not, whether you have memory problems or not, it helps to think creatively and to be ready to improvise, to let go and go with the flow. I've learned that I can't afford to be too attached to things the way they are; attachment brings even more suffering to MS patients than to most people.  

Be flexible. Make plans, but make 'em in pencil.