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.

7/23/15

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: http://www.tv2.no/a/5316228. 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.

6/25/15

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 year....it 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 old....my 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
Buxton
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 online...sigh......my 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!

12/10/14

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.

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!