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.
flora
