XMRV Treatment: Month Two

So sorry I haven't posted lately.  I've been occupied by my writing (imagine that, focusing on real life and not my illness).  In particular, I've been participating in the A to Z blog challenge for the month of April on my writing blog.  It's been a lot of fun, but I find that it takes a lot out of me.

After two months of treatment, I asked my husband if he could see any differences at all.  He said there are hints.  I agree.

I notice that I am having more good days.  By good days, I mean that I feel lighter, happier, in a good mood, like a fog has lifted from me.  I have a little more energy, and I tend to do a little bit more spontaneously -- things like wash my sink, clear the table, empty another box (still haven't finished unpacking!).  It's not a big difference in my activity level, but it's definitely noticeable.

Unfortunately, that buzz of energy also keeps me up at night.  I have a hard time falling asleep, and when I do, it is filled with vivid dreams and wakings.  Which leaves me exhausted the next day, and it takes  several days to normalize again.  It's a cruel cycle.

Another thing that I've noticed is how horribly deconditioned I am after years of declining activity.  I can't help but feel that if I were in better shape, I'd be able to take advantage of my good days and do more with them.  It's a nasty catch-22.  If I push my activity level, I feel tired and crappy.  If I don't, I can't make any progress in my health. 

I've chosen to push myself a little bit.  I am doing gentle yoga in the mornings.  I've bought a pedometer.  I walk an average of merely 1,000 steps a day.  Before I got sick, it was around 8,000.  I try to walk just a little extra.  I'd like to get it up to an average of 2,000 steps a day.  For now, anything over 1,000 is a victory.

Many people have asked me what specific medications I am taking.  I don't feel like I can give that information right now.  It would be irresponsible.  I don't want to appear that I'm recommending this course of treatment for anyone.  I don't know if it works, and even if it does, I can't assume it will be right for everyone.  If you are as determined as I was that you would like to try antiretroviral treatment, then I recommend you do your homework, find which drugs target XMRV, and decide with your doctor which treatment is best for you.

XMRV Treatment: One Month

Stupid Daylight Savings Time.  I was all set to write this wonderful, optimistic post about how good I'd been feeling lately, then WHAMO!  DST + monthly hormonal revolt = crash and feeling crappy.

Prior to the crash, I noticed several very good days.  And I mean VERY good.  There were days where I woke up refreshed and smiling.  I do not often wake up refreshed, and I almost never wake up smiling.  Although my functionality didn't seem dramatically improved, I felt like I was improving.

With CFS, I am aware of the energy cost of every movement.  I notice the effort it takes to raise my hands to wash my hair.  I notice the effort of standing while getting dressed during the day.  I notice the effort to write a journal page.  I notice the effort of talking on the phone for 10 minutes to my husband.  CFS is like a heavy fog that settles into my bones, and I am aware of it all the time.

But during those good days, it was like a lifting of the fog, or maybe more like a lightening.  Instead of feeling like I was walking through sand, it felt like I was walking through glue.  Yes, everything was still an effort, but so much less of an effort than it had been.  I felt lighter, like gravity had lessened its pull on me.  It was wonderful!  And I was ready to declare yes, I am getting better!

And then we had the good ol' time change switcheroo, and a whole week has gone by with no good days.  My sleep is back to being disrupted and unrefreshing.  My schedule is all messed up, and my internal clock is not adjusting as quickly as I'd like.  I'm staying up too late because I'm just not sleepy yet, dang it!  And then I'm sleeping 10 hours and still waking up sluggish.  Like I mentioned, my monthly period always exacerbates my symptoms, and having it coincide exactly with the time change has been a double whammy. 

I'm hoping this week brings improvement, that my body will adjust to the time change and let me sleep well once again.  I'm hoping I'm able to coax a few good days back. 

Other things I've noticed:  I don't have any side effects with the medication at all.  I'm tolerating social visits much better than before.  And I've been adding spontaneous little tasks to my day, things like washing the sink or unpacking a box.  So maybe my functionality is improving a tiny bit.

Hopeful Signs

Two things: 

Yesterday I felt good -- all day long.

And today, I definitely notice less pain.

:)

Follow Up Doctor's Visit

I met with my doctor yesterday, and I have to say, it went swimmingly!  My labs show no toxicity, and he said we would have seen something already if there were a problem.  I am tolerating the meds very well.  He asked if I have noticed any changes yet.  I told him that I have moments where I feel very good, but they evaporate pretty quickly.  Before, I would have a very distinct energy envelope between mid-morning and early evening where I felt fairly good as long as I kept within my restrictions.  This is different and unpredictable.

He said he noticed that I got up on the exam table easier than I did at my first visit.  I was impressed that he had not only noticed but remembered.  So often, you feel like a blank face on an assembly line, and you wonder if the doctor even looks up from your chart.  I think he is becoming more and more interested and excited in our little experiment.

I can't say that my capacity for activity has necessarily increased, although I did spend almost two hours on my writing project the other day.  I got rather caught up in my story and didn't even notice the time.  I was pretty wiped out afterward, not surprisingly.  But no crash the next day.  I don't know, there may be some minute improvement, but it isn't big enough to quantify yet.

The doctor renewed my prescription and gave me two refills.  I don't have to return for three months.  By then, I should definitely know if the meds are helping at all.  If not, I stop treatment.  If so, we continue.  Fair enough, right?

My mantra these days is "We'll see, we'll see." 

ME CFS XMRV Expert Dr Paul Cheney - Hits Back on 'GET' Graded Exercise t...

Dr. Paul Cheney talks about the dangers of using Graded Exercise Therapy in ME/CFS patients.

Week 1: Worse Before Better

I have been taking XMRV treatment for one week now.  I expected to feel worse before I felt better, and I think that is true.  However, it is more of a dip than a plunge.  I take the pill at night, and it does make me feel sleepy.  Now, for those of you familiar with CFS sleep disturbances, you know that this is actually a good thing!  I find I am able to drift off to sleep much quicker than usual, and I"m sleeping more deeply than I have in the past.  However, I'm sleeping longer than I had been by about an hour, and I am slow to get going in the morning.

My energy levels have become unpredictable.  I was used to a reliable "energy window" that would last from mid-morning to early evening most days (unless I overdid it).  Now, I'm finding my energy in bursts.  I'm sluggish; then I suddenly feel pretty good; then my energy abruptly disappears, only to come back again a little later in the day.  I'm riding it out.  I am careful to not overdo it when the energy is there, but to pace myself as usual.  When I feel deflated, I rest.  I've been spending more time in my bed than I usually do, not necessarily crashed or even officially resting, but just kicking back.

I'm not getting much done these days; there are still boxes waiting to be unpacked, but those will wait.  On the flipside, my household is not descending into complete disarray.  I'm still able to do minimal activities like laundry and nagging the kids.  I haven't felt the need to call for additional help, like I was afraid I might have to.

I haven't exercised since the move, for obvious reasons.  No stretching, no yoga.  I think I'll try to ease back into the yoga.  See how well I tolerate it.  I hope I do OK, because it helps so much with pain management.

Ha, once again, all I can say is we'll see, we'll see.

XMRV Treatment: First Impressions

So, it's been three days since I began XMRV treatment, and so far... well, not much, really.  My throat is a bit more sore than usual, and I feel a bit more achy, especially in my upper arms, neck, and hips.  Is that the "inflammation" that people talk about?  Also, I feel a little more sleepy than usual.

I don't seem to be having any negative reaction getting on the medication.  I haven't noticed any side effects related to it, like nausea, diarrhea, or insomnia.  The other effects could very well simply be because I've been doing a lot of push/crash for the last month.  First the move, and then my birthday was on the 10th, and I broke a lot of rules that whole weekend.  I crashed on Sunday, but I felt pretty good yesterday.  I had that little bit of energy that makes me wander around the house picking up things.  Good times.

I've been asked what kind of medication I'm taking, and what dosage, but I don't think it's a good idea to mention specifics at this point.  I'd like to wait and see what kind of results I get before first.

I will, however, mention the supplements that I'm taking that I'm hoping will improve my chances of success or extend any gains I might make.

Currently, I take Trader Joe's multivitamin, vitamin D, probiotics, fish oil capsules, denatured whey protein for glutathione, d-ribose x3 daily, melatonin, and generic acetaminophen PM.  I just ordered some sublingual B12 tabs and l-methylfolate, for methylation.

Hm, other than that -- I had a lovely Valentine's Day!  The kids helped make our special breakfast for dinner, and my husband treated me to See's candies.  I hope you all had a wonderful day, too!