Epivir, Day 1

As you know, a few months back I was getting a bit desperate. I was pretty much bed or couch-ridden for most of two months; I pretty much lost an entire summer. POTS was flaring up pretty bad, and Orthostatic Intolerance, all made worse by infection after infection, and I could tell my immune system was kaput. No sooner would I finish one round of antibiotics than I'd feel the infection returning, plus the Coxsackie B &/or Echovirus acted up too, so I couldn't even eat, was feverish, in pain, and weak as a kitten. I literally felt like I was dying at times, just wasting away...and it didn't help that apparently I'm sensitive to the antibiotic Bactrim, and didn't figure it out until I had an episode where my throat was closing up, the tachycardia flared up, and I couldn't breath and was having chest pain, not to mention feeling so weak and tired I couldn't re-arrange myself in bed w/o getting wiped out.
It was hell.

My doctor told me he wanted to try me on another anti-viral, after I stabilized a bit.
When I went back a few weeks later, he gave me an rx for Epivir, a drug used mainly to treat HIV, and also Hepatitis B. Yup, we're talking the big guns here.
(The doc chose it because it has been shown effective in treating a strain of Coxsackie B.)

Epivir, also known as Lamivudine, is a nucleoside analog reverse transcriptase inhibitor (also known as an nRTI). Basically, from what I can gather, it stops retro-viruses from duplicating in your cells. (If you watched Dr. Oz's explanation of what retroviruses do when he was explaining XMRV, that'll make sense...Basically he said they duplicate and copy themselves into the DNA of your own cells so the body can't fight them off...almost like a bad guy using a human shield...except I'm not even sure the immune system knows it's doing it because it's hiding so well, at least that's my interpretation...maybe it knows, but won't kill it's own cells?)

Anyways, that sounds good, right? Because the cells are still malfunctioning and sick, so the more the virus does this, the sicker you get. And if it can't do it anymore...I'm guessing the infected cells eventually die off and that gives the body a break and the immune system can respond to the damage the virus, and other infections, better. Again, total layperson's interpretation, so please cut me some slack if the science is a bit off.

Anyways. I got the original rx for it months ago, only it costs about $400, only available in brand name, and my old insurance had a $500 brand name deductible. I managed to find coupons and stuff and get it down to $200 or so, but I still couldn't afford that!

So, I ended up losing my insurance, and was able to sign up for assistance from the drug manufacturer and get it -- FREE! (They won't help you meet your deductible, but they will give it to you for free! Is that whacky or what?)

I was putting off taking it until the New Year, because I was afraid of side-effects, holidays are stressful and hard enough when you're chronically ill, and I wasn't sure how I'd respond.

Last night, I did some research, and found the side effects aren't too bad, not worse than anything I already take, except for something called IRS (lol!) or Immune Response Syndrome. Basically your immune system might suddenly go into gear in overdrive fighting all the infections it finds and cause an inflammatory/immune response which would result in feeling pretty rotten.

I was also debating, because I REALLY want to get back into an exercise regimen, and was planning on starting, like, now. I got nervous though, that taking the new med and starting to exercise again might be too much. And I REALLY need to start on it, even if it's super slow, not just because my genetically endowed gene for very generous hips is kicking in, but because it makes me feel better, not just physically, but mentally, too.

In the end, I said screw it, I took the little diamond shaped pill and I'm going to the gym on Monday, if only to do 5 minutes of cardio and the isometric exercises I started out with in Physical Therapy last year...

Today, I woke up, and I'll admit I did feel pretty groggy and yucky, like I was swollen all over, pretty miserable. I haven't felt QUITE that bad lately, but it happens occasionally, and it was a sunny day so my room got hotter than it's been in awhile, which always makes me wake up feeling like that, so...chances are it was just that.

The only thing I did notice, is it made me sleepy, and I think it is again now, so I'm off, at least to lie down...

Wish me luck, I hope to update regularly!