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.

7/8/08

We're Supposed to Call Them "Challenges"...

I haven't updated this for many months, so there are some issues...

First of all, after a couple of years of chronic, asymptomatic bladder infections that I assumed were due to not drinking enough liquid, I realized that I have urinary retention, a common problem with M.S. patients, caused by a bladder that basically fights against emptying, called neurogenic bladder.

When the bladder keeps a pool of urine inside all the time, infection is inevitable, especially in women, no matter how fastidious one's bathroom hygiene....

And yes, of course I tried cranberry juice; I drank nothing but cranberry juice, at least 1/2 gallon a day, along with many, many cranberry tablets daily, for months on end, literally. It didn't make any difference at all, except that I gained weight from all the juice. Before I got MS, cranberry juice was all I needed for my then rare bouts of cystitis. Presumably my bladder was emptying normally then.

Anyway, it turns out I needed to mechanically empty my bladder by self-catheterizing, frequently emptying the residual urine out with a little tube. As a (retired) midwife as well as a female, the procedure was easy even the first time, but it still wasn't enough to keep infection away for long. So I had to resort to daily preventive antibiotics, specifically Augmentin, which has been working fine, but is a little hard on my stomach.


I hope to switch to d-Mannose, a healthier alternative to antibiotics in treating urinary tract infections (UTI's). But before I can do that, I need to get some labs done to see how I'm doing, and that'll have to wait, because like more and more people, I'm flat broke, cupboard bare, up to my eyebrows in debt, etc. I truly can't work and have no health insurance, so I can't afford to get labs or any other tests done for now unless it's a life-and-death emergency. (I do have some income, but it goes to pay back taxes, which means that I don't qualify for any medical programs.)

But on the up side, last month I finally finished my application for disability (WHEW!), and have reason to hope that I'll eventually be approved, which will get me Medicare, so I can finally see a urologist, among other things.

Anyway, the self-cath routine was no problem at all until something else happened.... a stupid accident that is rooted in my total inability to multitask, another common M.S. symptom.

You're not going to believe this, but I got hurt trying to do an isometric exercise. Seriously. (Talk about lame...)


To ease mild bilateral tendinitis in my arms, my doctor suggested an exercise in which you hold your hands together and try to twist one hand while resisting with the other one. Well, I did the twisting part really well, but I must have forgotten to resist, because something went pop and I knew I'd messed up my right wrist. Doh!

This was over 3 months ago, and after zero improvement (despite wearing a brace and taking my usual anti-inflammatories), I finally had an MRI done a few weeks ago (another reason I'm broke). Diagnosis: torn tendons, a lump on the bone, etc. Of course I'm supposed to see a hand surgeon, yet another thing that'll have to wait.

Meanwhile, I still wear the wrist brace all the time. When I take it off (like to wash my hands, or to wash it), I really have to remember to hold my wrist very, very still. If I forget and try to flex it, which sometimes happens because I space out easily, there's this very painful "popping" sensation, accompanied by intense burning that lasts and lasts. Not fun at all, and not conducive to healing.

So to get back to the initial subject, I can't self-cath until this wrist thing heals or is surgically repaired because self-catheterizing requires acutely flexing both wrists. Like I said, I'm on antibiotics anyway so hopefully that'll cover me.

Actually, the only thing I'm really worried about is that I've been out of LDN for a couple of days so far. Yikes!


Even though it's very cheap (about $1 a day), I was too broke to reorder it until this morning. I borrowed some money from some friends yesterday evening, (thank you Johnny and Sara!), so hopefully my refill will arrive soon. I get my LDN from The Compounder Pharmacy in Aurora, Illinois ; they're one of the few compounding pharmacies that has many years of experience successfully compounding LDN, and in my experience they're always dependable, prompt, and reasonably-priced.

The thing is, the only other time I ran out of LDN, about 3 years ago, I developed a horrific relapse, which left me with chronic labyrinthitis, for which I see an oto-neurologist and still have to take Phenergan daily. The nausea from the labyrinthitis somehow led me to drink a lot less liquid, which didn't help my bladder problems...

Obviously I'm hoping that nothing dramatic will happen this time; LDN can't help balance my immune system if I can't take it...
Oh, and it's July in Texas, which should speak for itself.


M.S. patients are almost all heat-intolerant. For many of us, that means no hot bubble baths, no getting into hot cars, no lounging in a hot tub, certainly no saunas, ....I pretty much hibernate in the air conditioning for almost 6 months out of the year. I take a bottle of iced water and sometimes ice packs when I go out.

By the way, they used to do a "hot bath test" to diagnose MS.

So exactly how does too much heat affect the typical MS patient?

For most of us, we can count on increased symptoms, temporarily, such as: profound fatigue and weakness, numbness in the extremities, decreased cognitive function, slurred speech, blurred vision (known as Uhthoff’s sign), and/or tremor.

I have a friend who's had MS for decades, and although she doesn't drink alcohol, she's been presumed to be intoxicated in public several times because she simply got too hot. It's easy to see how it can happen- she was staggering, her speech was slurred, and she couldn't even write legibly, so she was treated like a drunk. The police were called on at least three different occasions that I know of, before she finally got a Medic-Alert bracelet.

Personally, I carry an M.S. I.D. card, officially identifying me as an MS patient, and describing possible symptoms; on the back of the card, it says, "The person named on this card has Multiple Sclerosis and may have any or all of the following symptoms:
•Loss of balance or coordination
•Difficulty walking or writing
•Numbness or partial paralysis
•Double or blurred vision
• Slurred speech
•Extreme fatigue


Meanwhile, I have dreams about living in a snowy place... it was 105F here yesterday.


But l am unceasingly grateful for air conditioning and the electricity to run it, for clean cold water to drink and crushed ice to munch, and especially for my supportive friends and family who won't even let me get into a hot car.

Things are actually a lot better for me, lifestyle-wise, than when I was diagnosed with MS in 2003. I was living alone out in the country with no A/C (not even in the truck), and no running water at all. Barton Springs, Austin's famous spring-fed pool, was a Godsend for me then; I'd swim my slow laps in the icy water and it'd keep me cool for hours afterward.

Blessed Barton Springs, a brisk 68F year-round.

Because of my deteriorating spine, I can't make the walk down to the Springs anymore, but maybe when my wrist heals (and I win the Lotto), I can get a little wheelchair and roll myself down to the pool...

Wow, I really didn't mean to complain so much, but, you know, shit happens.

*If you're interested in d-Mannose, it's a naturally-occurring simple sugar that appears to be a safe, practical alternative for the treatment of urinary tract infections (UTI’s). It's is absorbed eight times slower than glucose, and when ingested, is not converted to glycogen or stored in the liver, but rather goes directly to the blood stream from the upper GI tract. So d-Mannose is mostly filtered through the kidneys and routed to the bladder.

The bladder lining is comprised of polysaccharide molecules. Finger-like projections on the cell surface of E. coli bacteria adhere to these molecules, initiating an infection. In the presence of d-Mannose, E. coli attaches to the d-Mannose molecules instead, coating the bacteria which forms a complex which is expelled when you pee. So basically d-Mannose removes bad bacteria by encapsulating it.

2 comments:

Mitch Fields said...

Hi,

I just read about your problem and would like to help out a little.

My company sells UTISlip brand D-Mannose and I would like to send you a bottle for free. You can just contact me at my website http://WellnessPartners.com

Mitch Fields

flora68 said...

Mitch, you are an angel! What a kind offer. I'll be on your website ASAP.