A couple of weeks ago I ran out of Epivir. I made sure to taper off, as I knew I was running out and more wouldn't be available quickly. As I did, my energy, which has been wanting all year long, seemed to bounce back. Around the same time, I re-started a once daily 1/2 dose of Tramadol, which I'd previously used with success to get me going past the aches, stiffness, and sluggishness of an FM/CFS morning. I also began a supplement called Tre-en-en, as well as Methylcobalamin (an readily absorbable version of Vitamin B-12). I wasn't sure which of these was having the effect, or if it was simply the absence of the Epivir, but I now suspect the energy and stamina may be due in large part to the B-12. (I'm a lacto-ovo vegetarian of 10 years, and I've had a borderline anemic Iron level for quite awhile.)
Whatever it is, am I am infinitely grateful for the energy. The list of things that need to be done is endless and it gives me so much joy to accomplish so much, even if they are mainly little things, like phone calls, errands, and tidying up around the house. Accomplishment is a heady reward.
I am happy to report that my sleep is improving as well. I regularly fall asleep no later than 2:30am, and sometimes as early as 1:30am, a huge difference from my former 4-6am bedtime. Which means I'm waking up earlier too. I'm not exactly leaping out of bed, but I find myself going as soon as I get up much of the time, and able to keep it up for a bit...
Not sure if I had previously reported it, but I got scared off from the Tagamet experiment when I began to wake up groggy and spend the day extremely sleepy. (It knocked me out at night, also.) I've tried it again since I went off of Epivir, and found that it doesn't seem to have the same effect on my energy level and sleepiness. (Maybe makes me a little sleepy at night, and if today is any indication, tones down the energy, but nothing like before.)
Things are going better overall than they have in a long time, and I can almost say that I am ok, closer to actually brushing against happiness than I have been in a very long time. I have truly been blessed this year, with progress in my emotional and physical well-being and I'm starting to feel like a worthwhile person again; part of "the world" as I tend to think of it, rather than an outsider looking in...
To thank, I have my family, their love and generosity, and I like to think, maybe Reiki or the fates smiling upon me and mine, because all around me the wheels that were frozen for such a long time seem to be turning things in the right direction once again. It so lifts my spirits to see those around me moving onward and upwards...even the darn (i.e. beloved) cat is doing well...and I got a notice from the Disability people that they are requesting any further info, so I'm guessing they may be looking to finally move forward. Yup, there is much hope to be had these days and maybe soon, life can finally, truly, be continued...Wish me luck!
Showing posts with label epivir. Show all posts
Showing posts with label epivir. Show all posts
Tuesday, July 20, 2010
Friday, April 9, 2010
Cheered Up!
It's been bugging me for weeks, actually months now, that I really need to post an update! I've been feeling in much better spirits for most of the year now, and I suspect part of what kept me from posting was an irrational fear of bursting the bubble...
I think it's safe to say now that as the year is more than a quarter over, the time has come, so here goes...
Things are good. The downward dragging arms of depression have let up. I don't have very many down, down days like I used to last year. If that's because the holidays are over, or just because my mood-dictating chemicals are re-setting themselves, I don't know.
I've been taking Epivir for 3 months now, and I noticed the difference, at least in my immune system, almost from the beginning. (Although at the very beginning, I did get sicker, I had a stomach flu, i.e., an Enterovirus flare-up that lasted for almost 3 weeks; I could barely eat solid foods, but happily, I needed badly to lose weight) In late January, or early February I came down with a sinus infection, but unlike last year, when one after another had me stuck in bed, achey, feverish, and feeling completely sick and miserable. This time, I barely felt sick. I only suspected I was because of persistent sinus headaches, and the fact that I was spitting up practically pure blood from my nose when I did my sinus rinses...
Anyhow, once treated, I recovered quickly and haven't been ill since. The only other difference I've noticed is I feel sleepy a lot sincee I started the Epivir, as opposed to just exhausted. Despite that, I think I am very slowly but surely gaining stamina.
The other change I've made healthwise, is starting the Body Ecology Diet.
I started it slowly, first working on incorporating foods from it into my existing lacto-ovo vegetarian diet. But I found it easier than I thought, and noticed the difference. My stomach had been bothering me a lot...besides acid reflux that needed constant acid reducers and antacids, I felt bloated and uncomfortable often, even nauseous at times, and I noticed that this also seemed to affect my Interstitial Cystitis symptoms. Once I started incorporating Body Ecology's "seed-like grains", things got much better, and when I ate my old diet things acted up right away again, so I decided to make it a full-time endeavor, even if minus some of the more expensive, difficult sounding foods, such as Young Coconut Kefir and Culutured vegetables.
Things were going great, I lost more weight and starte feeling SO much better about myself, my stomach flattened out so much that my seatbelt in the car didn't bother me anymore; in fact it barely touched my stomach.
Unfortunately in the last weeks I found myself cheating a bit and right before Easter I'd gone gung-ho, inclucing foods like Kimchi, Coconut Kefir (I made my own using a bottle of store-bought YCK as a starter with my own Young Green Coconut water. It worked like a dream! And way cheaper than buying the culture.) and even Natto. I started itching a bit, apparently from die-off or detox...but I got that under control...until I chated again on Easter weekend, and then the itch got insane, like crazy-making...but I read up on it, and came to the conclusion that it's my liver detoxing, probably must more quickly because of the new foods, decrease in grains, and increase in raw veggies.
The one amazing thing that has occured in the last couple of weeks, is that my allergies seem to be disappearing. They're still there, but instead of in the form of asthma attacks, itchy eyes (which respond to ahti-histamines) and excruciating nasal congestion so bad I can barely breath, and excruciating sinus headaches (which don't fully respond) I find myself with very mild nasal congestion, and an occasionally runny nose!
I find myself loving SALADs (yup, I'm one of those vegetarians who hardly eats veggies, subsisting mostly on grains, albeit whole, and protein) and rediscovering the joys of other veggies, raw and cooked. Sometimes my stomach feels a little grumpy, and I feel it asking me for some raw veggies. I eat a salad, or even a simple celery stick, and it becomes relaxed, light, and happy.
So good stuff lately... I've been keeping to myself, but I've stopped minding it. Trying to have a social life right now is just TOO much work. I'll happily spend my weekend nights at home with the laptop and my cable, or visiting my Mom and taking it easy at her place. I no longer seen the point in going out to drink so I can feel like a normal person for a few hours and feel miserable for 2 days. I haven't give up on living, but I don't mind waiting until my time comes again, as I'm sure it will. In the meantime, thid diet is one thing I can do to take care of me, and I have confidence that it will continue to improve my health. I'm also trying to bolster my adrenals a bit, as I still feel overwhelmed about nothing far too much of the time, and I'm hoping I can at least go back to school in the Fall. To think that it's been 2 years already...2 years in which I could have transfered to the university nearby with the great Writing Program...well, I don't beat myself up or get angry these days. I haven't been up for it, and that's that. One day perhaps but now, I just want to find some kind of peace, and I'm getting there.
I think it's safe to say now that as the year is more than a quarter over, the time has come, so here goes...
Things are good. The downward dragging arms of depression have let up. I don't have very many down, down days like I used to last year. If that's because the holidays are over, or just because my mood-dictating chemicals are re-setting themselves, I don't know.
I've been taking Epivir for 3 months now, and I noticed the difference, at least in my immune system, almost from the beginning. (Although at the very beginning, I did get sicker, I had a stomach flu, i.e., an Enterovirus flare-up that lasted for almost 3 weeks; I could barely eat solid foods, but happily, I needed badly to lose weight) In late January, or early February I came down with a sinus infection, but unlike last year, when one after another had me stuck in bed, achey, feverish, and feeling completely sick and miserable. This time, I barely felt sick. I only suspected I was because of persistent sinus headaches, and the fact that I was spitting up practically pure blood from my nose when I did my sinus rinses...
Anyhow, once treated, I recovered quickly and haven't been ill since. The only other difference I've noticed is I feel sleepy a lot sincee I started the Epivir, as opposed to just exhausted. Despite that, I think I am very slowly but surely gaining stamina.
The other change I've made healthwise, is starting the Body Ecology Diet.
I started it slowly, first working on incorporating foods from it into my existing lacto-ovo vegetarian diet. But I found it easier than I thought, and noticed the difference. My stomach had been bothering me a lot...besides acid reflux that needed constant acid reducers and antacids, I felt bloated and uncomfortable often, even nauseous at times, and I noticed that this also seemed to affect my Interstitial Cystitis symptoms. Once I started incorporating Body Ecology's "seed-like grains", things got much better, and when I ate my old diet things acted up right away again, so I decided to make it a full-time endeavor, even if minus some of the more expensive, difficult sounding foods, such as Young Coconut Kefir and Culutured vegetables.
Things were going great, I lost more weight and starte feeling SO much better about myself, my stomach flattened out so much that my seatbelt in the car didn't bother me anymore; in fact it barely touched my stomach.
Unfortunately in the last weeks I found myself cheating a bit and right before Easter I'd gone gung-ho, inclucing foods like Kimchi, Coconut Kefir (I made my own using a bottle of store-bought YCK as a starter with my own Young Green Coconut water. It worked like a dream! And way cheaper than buying the culture.) and even Natto. I started itching a bit, apparently from die-off or detox...but I got that under control...until I chated again on Easter weekend, and then the itch got insane, like crazy-making...but I read up on it, and came to the conclusion that it's my liver detoxing, probably must more quickly because of the new foods, decrease in grains, and increase in raw veggies.
The one amazing thing that has occured in the last couple of weeks, is that my allergies seem to be disappearing. They're still there, but instead of in the form of asthma attacks, itchy eyes (which respond to ahti-histamines) and excruciating nasal congestion so bad I can barely breath, and excruciating sinus headaches (which don't fully respond) I find myself with very mild nasal congestion, and an occasionally runny nose!
I find myself loving SALADs (yup, I'm one of those vegetarians who hardly eats veggies, subsisting mostly on grains, albeit whole, and protein) and rediscovering the joys of other veggies, raw and cooked. Sometimes my stomach feels a little grumpy, and I feel it asking me for some raw veggies. I eat a salad, or even a simple celery stick, and it becomes relaxed, light, and happy.
So good stuff lately... I've been keeping to myself, but I've stopped minding it. Trying to have a social life right now is just TOO much work. I'll happily spend my weekend nights at home with the laptop and my cable, or visiting my Mom and taking it easy at her place. I no longer seen the point in going out to drink so I can feel like a normal person for a few hours and feel miserable for 2 days. I haven't give up on living, but I don't mind waiting until my time comes again, as I'm sure it will. In the meantime, thid diet is one thing I can do to take care of me, and I have confidence that it will continue to improve my health. I'm also trying to bolster my adrenals a bit, as I still feel overwhelmed about nothing far too much of the time, and I'm hoping I can at least go back to school in the Fall. To think that it's been 2 years already...2 years in which I could have transfered to the university nearby with the great Writing Program...well, I don't beat myself up or get angry these days. I haven't been up for it, and that's that. One day perhaps but now, I just want to find some kind of peace, and I'm getting there.
Saturday, January 2, 2010
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!
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!
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