Basically I'm doing great! I really don't feel the MS at all. I still can't take excess heat and I doubt that that'll change, so hiding from the Texas heat all summer is tedious and sometimes isolating, but totally do-able. (Today in Austin it really feels like autumn, and I'm pumped!)
I did have a definite setback, but it occurred during the only time I was off LDN (I briefly ran out), and it gave me a whole new, totally miserable symptom (more about that below), and believe me, I will NEVER run out of LDN again!
To backtrack, I started on LDN (3mg) on February 10th, 2005. Within weeks I felt like a whole new person, and that's still the case.
But due to a faxing error between the out-of-town pharmacy and my doctor's office, I was off LDN for about a week in April, 2005, resulting in severe pain, no energy, and the beginnings of serious inner ear problems. I finally received and started taking the LDN again and awakened the next morning feeling WONDERFUL in terms of pain and energy!
But the inner ear symptoms escalated sharply anyway, to the point that I had a constant feeling of motion sickness, not only if I moved, but even if I just saw something move, or even if just my eyeballs moved at all! Have you ever had to literally hold your eyeballs still with your fingers (through the eyelids)? I have, for days on end, and it really, really sucks to be that sick. I can take a lot of pain but nausea really undoes me.
Anyway, it turned out to be a severe case of viral labyrinthitis, and after a week of it I was so dehydrated from the constant vomitting that I wound up in the ER at the end of April '05 for IV fluids and K+.
But the upside of all that misery was that I was sent to a brilliant, innovative oto-(inner-ear)neurologist who happens to be VERY pro-LDN. In fact, I got the impression that ALL of his MS patients are on LDN.
He did a ton of complicated tests on my brain, balance, hearing, cognitive functions, etc., and told me that my labyrinthitis as just another part of MS for me.
Like many researchers, he believes that MS is (partly) triggered by a herpes virus (nothing new there, lots of people believe that), the same virus that is almost always responsible for viral labyrinthitis.
He believes in treating the virus primarily, which he says also treats the MS primarily, which is something that neither the CRABs nor Tysabri claim to do. But it's a long term thing; it's especially hard to stop a virus (or any infection) that's deep in your head.
So I'm still on LDN and probably always will be, but we upped the dose to 4.5 mg. And the doc gradually eased me into anti-viral treatment.
(Gradually because he said that suddenly starting on a strong anti-viral can actually trigger the MS to flair up in some people.)
So first he put me on Lauricidin, a natural lipid that has shown antibacterial, antifungal, anti-yeast and antiviral properties. Here's their website: http://www.lauricidin.com/default.asp
After 6 weeks on Lauricidin (with no side effects at all), I was switched to a very small dose of Valtrex (125 mg twice a day). As a matter of fact, that was a year ago yesterday, last Halloween ('05) ...(boo! )
After a couple of months on Valtrex the dosage was doubled to 500mg total daily, split into two 250mg doses), also with absolutely NO side effects. (None are expected with this cautious protocal). I'm still on that dosage.
My follow-up assessments started getting better and better, and my labyrinthitis symptoms are almost totally gone. Last month the doc added amantadine as well, another anti-viral that helps many people with the viral aspects of MS, and it'll also likely prevent the flu as long as I'm on it. But the amantadine is just for a couple of months.
This doc is big on testing and fine-tuning various hormone levels as well as testing for heavy metals. He feels that getting all that stuff in balance is critical. He's into naturopathic and conventional medicine, open to whatever really works. And he's into the science of it, not subjective or anecdotal assessments.
So, I'm feeling great, and MS really isn't an issue at all for me now that the weather's cooled off again (last fall and winter were great for me too), and the Texas Longhorns are having another brilliant season, so life is good.
The only drawback now to my MS diagnosis is that my insurance premiums doubled , twice in the last two years, to over $900 a month, so I've finally had to drop it. In fact, today is my first day totally uninsured, so wish me luck on that! Fortunately LDN is literally cheaper than water around here, but the insurance never would have covered it anyway.
Lastly, let me say that I do realize that LDN hasn't worked for everybody, and I'm sorry if my enthusiastic posts irritate people who had bad luck with it. But I can't help but feel that it's still worth a try. In fact, I really think that MS patients should try LDN first, not as a last resort; it's been two years and I still have countless lumps and dents from Copaxone injections. Not to mention spectacular debt! What a waste!
Hope you're doing well out there. I guess a lot of people are on Tysabri now, huh? Well, whatever floats your boat...
Good luck to us all.
What fatigue? If you mean from the summer sun in Texas, I can't imagine anything helping with that!Check with your doctor about vitamin d3 and look at Paul O'Connor's stuff on it as it likely will help with the fatigue. .
Is D3 for heat intolerance in particular? Because that's the ONLY time I feel anything remotely like fatigue. I'm 56 and VERY energetic, physically and mentally.
Thanks so much for the update. It sounds like you've got a well rounded approach that best of all is working for you. Congratulations!
I welcome your periodic news and hope your good fortune continues. Don't forget to keep us posted in the future too.
My only bad news healthwise is that I had to give up my health insurance, so that's kinda scary. (But it beats paying premiums of $1,250.00 per month, which is what they went up to!) Luckily I'd already tried all the expensive MS meds I ever care to explore (and then some) while I had insurance, , and happily LDN is less than $1 per day so no biggie.
I've been blogging a lot, and I have one little blog you might want to check out, about MS and LDN in particular; I'd really appreciate your input if you have a few minutes. Here's the link http://ldnformultiplesclerosis.blogspot.com/ Be aware that it's a work in progress and still early...
I've had only one flare-up of my MS, which was completely inconsequential , very temporary and really no surprise because I'd been fighting septic arthritis for several months. It was about this time last year, right after I lost my insurance of course!
Cultures were done but it took months and many rounds of multiple antibiotics to get it under control, and by then the joint (last joint in my index finger) was long since completely destroyed. (And it wasn't even MRSA! Just regular staph, but that's what can happen with septic arthritis- infection goes straight to the joint and stays walled off, multiplying and hard-to-reach.)
Anyway, after a month or so of this raging infection, I noticed a new symptom- incessant itching of my other hand, specifically the thumb. It itched like mad but there was nothing there, so I knew it was probably an MS thing.
Sure enough, once my infected finger settled down, the itching in the thumb of my other hand stopped and hasn't recurred. Whew! I was left with a permanently bent, lumpy index finger but also a feeling of real gratitude that, first, I didn't lose my finger, and second, that my auto-immune response to it was so mild! I often worry about what would happen if my "good" eye gets zapped by MS, and compared to that, a temporarily itchy thumb was NOTHING! Heck, that was nothing anyway...
Other than that, no news here (that's not on my blogs!), except that we finally got a real cool front this morning I live in Austin, and our first cold front is usually around the first week of October, but not this year, not until this very morning, and it feels GREAT! It was nearly 90 yesterday, and today it's dropping through the '50's. I love it.
Again, I hope this finds you folks doing well. I guess some of you may have been at the LDN Conference at Vanderbilt. Hope it was worthwhile.
I realize more and more what a huge part vulnerability to herpes viruses plays in MS. FYI, there's something about Herpes and MS on my silly little blog "LDN for MS", which you can find at this web address; http://ldnformultiplesclerosis.blogspot.com/.
The blog is nothing fancy but I think it's been of some help to at least a few people with MS. I don't update it very often because here's really nothing new to report, and I don't "do" MS that much anyway. I was pretty well disabled with progressive spinal collapse before I ever got MS, and the spinal issues are worse than ever, so I have more pressing health issues to handle than "just MS" (so far; I realize the MS may well overtake the spinal issues eventually).
BTW, I also have another MS-related blog, "MS Patients Against Global Warming", at this address, http://mspatientsagainstglobalwarming.blogspot.com/.
That second blog was started halfway in jest, but with current weather patterns, I can't remember what the heck was supposed to be so freaking funny about it; we're burning up here! In Austin, Texas we're dealing with the same thing much of the USA is dealing with; a summer so freaking HOT it feels like the planet wants us GONE. Or at least, slow-roasted.
Speaking of which, The Onion had this headline after the horrific tornado outbreak and massive flooding in May; "Planet Earth Doesn't Know How To Make It Any Clearer It Wants Everyone To Leave". The article went on to say that "According to a statement released to the press Tuesday, the planet Earth has "just about run out of ways" to let its roughly 6.9 billion human inhabitants know it wants them all to leave."
Hey, you gotta keep your sense of humor with MS! (And, you know, with the freaking Apocalypse, or whatever the heck's happening....)
Heat intolerance is a big deal for about 80% of MS patients, and I'm one of 'em. Summer seems to last forever here in Central Texas; I'd move to northern Canada in a heartbeat if I could, or at least to Vermont, but alas I'm stuck here in Hell, aka Texas in the Summertime. Not to mention the drought...it NEVER rains here anymore at all.
Heat-coping methods for me involve keeping my a/c in tip top condition and staying INSIDE with it where it's cool. Or swimming in an icy spring-fed pool. I only get outside EARLY in the morning if at all, and I always have a big bottle of iced water with me; it really helps. I shower in tepid water and finish off with cool, to lower my body temp a little. Like most MS patients, I feel MUCH better with a slightly lower body temp. Sadly I had to decline all invitations to June weddings and all summer festivals, funerals, etc. Basically I just wait for cooler weather.
I know I say this every summer, but I must say it again- Where's the fast forward button? I'm Jonesin for cool weather, but until that arrives again, I have a countdown clock on the MS Patients Against Global Warming blog, counting down to October 1st, by which time the hottest weather is gone for a few months. Right now the Countdown to Cooler Weather Clock is at "71 days, 9 hours, 36 minutes" and counting....
Well, that's it. Hang in there and stay cool.
But I AM aware that
1. LDN hasn't helped everyone, and I'm really sorry about that.
2. I've had MS for about 15 years, so my case could still convert to SPMS pretty much any time.
3. There's no way of knowing what would have happened to me if I hadn't been on LDN.
All that being said, I'm more positive than ever that LDN is a good answer for a lot of RRMS patients.
I still have my little blog about using LDN for MS, and it has more details about my MRI and my new doc. Feel free to drop by
How old is your son?