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.

10/5/14

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...
.....plus 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!

4/3/14

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.
FIRST, MY FAMILY DOC
 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.
THE SUPER BUSY OTONEUROLOGIST
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?
HOW ABOUT YOUR DOCTOR?
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!
POSSIBLE LINKS TO PRESCRIBING DOCTORS
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. http://www.thecompounder.com/alternative-treatments/autoimmune/low-dose-naltrexone/find-a-doctor-for-ldn.
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. http://www.ldnresearchtrust.org/node/147. 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:

Pharmacy
Phone
Fax
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
+44-141-647-8032
+44-800-027-0673
+44-141-647-8032

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. 

 

GOOD LUCK!

6/8/13

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!
a
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. 

2/22/13

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 amazon.com 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)