“Both abundance and lack [of abundance] exist simultaneously in our lives, as parallel realities. It is always our conscious choice which secret garden we will tend." - Sarah Ban Breathnach

Sunday, June 26, 2011

XMRV Treatment: Four Months

I continue a slow but steady improvement with my health.  When I went to my last doctor's appointment, I told him I felt like I was getting better.  I said I'm able to tolerate social visits better, and that I was more mobile around the house.  He said that was nice, but he was hoping I'd be able to give him something a little more quantifiable.

Well, here's a quantifiable improvement for you:  I lost a couple of pounds!  I haven't changed my eating habits.  It's been due to an increase in activity.

I have been taking advantage of having a pool in my backyard.  I try to go in every day, now that the weather is so hot.  I'm sure that being out in the sun and getting a nice Vitamin D fix is helpful.  I am gentle in the water.  I walk the width of the pool a few times, and I float on my back.  I can feel the muscles in my body stretching in new ways.  It feels heavenly.  I do a couple, just a few, water calisthenics.  And on a good day, I'll take a few strokes across the pool.  Seriously, three strokes will get me to the other side.  Again, it's movement in a new way, and I'm always careful to not get my heart rate racing.

The daily exercise has been helpful for my sleep, too.  I've been getting a good nine hours a night.  I feel more energetic during the day, less dragging.  I still rest twice a day, but I have to force myself to stay down at least 20 minutes in the morning and half an hour in the afternoon.  Rarely am I tired enough to rest a full hour.

I also feel like my immune system is strengthening, just a little bit.  This is kind of scary.  I know I've had infections floating around my body undetected for some time; now, my body is starting to fight back, so I'm getting more "sick" symptoms like mucus and fever.  I tell myself this is a good thing, and for proof, I have more energy than I did before my "sick" symptoms.

I'm still not venturing out of my house much.  With summer vacation, there aren't too many reasons to.  I content myself with enjoying the improvements on this level without worrying about kicking it up a notch just yet.

I'm enjoying my essential oils.  I feel like they are helpful, especially with immune support and orthostatic intolerance support.  Who knows for sure, right?  The digestive aid is definitely helping, though.  I really like the new supplements I'm using, too.  I feel like they help me bounce back from overexertion better than I had before.

Meanwhile, the controversy over XMRV continues.  Personally, I am waiting for the Lipkin study that should be out by the end of the year.  I feel that if WPI has made a mistake, he'll be able to explain how instead of just saying, "Well, I couldn't find XMRV using my fast, cheap methods, so it must not exist."  WPI continues to be confident that true replication studies will support their findings.  In the meantime, I'm taking ARV treatment, and I'm getting better.  That's enough for now.

Sunday, June 5, 2011

Note to Self: Stupidity Causes Setbacks

Well, I did it.  I pushed too hard too soon.  I attempted a visit with my sister that required an hour and a half drive each way.  I rested once while I was there, but it wasn't enough to undo the damage.  I crashed hard, and I haven't been able to get back to that blissful feeling I had been enjoying while on the meds.  It's been three weeks, and recovery is slow.

I haven't fallen all the way back to square one.  I'm still better off than I had been over the holidays and with the move.  It's just that feeling improvement and then having it slip from my fingers is frustrating.  I know what it feels like now.  I want it.  I hunger for it.  I stamp my feet and shake my fists when I can't have it.

I have started using essential oils as a supplemental therapy for treating symptoms.  Lavender helps a little bit with sleep.  I'm going to be adding marjoram this week.  It's supposed to have a sedative effect.  I'm hoping that between the two of them, I'll be able to stop taking the over-the-counter sleep aid I've been using.  I use a digestion blend for stomach problems, and it works fantastic.  I've also been taking oregano to fight infections, and an immune-boosting blend.  I have a pain relieving blend that works pretty well if I remember to use it at night.  I wake up with much less achiness.  I've started using cypress for circulation and the jury's still out on that one.  And I've been diffusing citrus oils, wild orange or a blend, which helps disinfect the home and smells delightful.  Citrus is supposed to relieve anxiety and have anti-depressive qualities. 

I don't know if all the oils will work, but like I told my sister-in-law, at least they smell good.  :)

I'm going to switch to a new brand of supplements next week.  It's a complete system of vitamins, minerals, fish oil, and antioxidants.  They claim that it should help with mitochondrial production, inflammation, oxidation, and glutathione production.  All stuff that is helpful for CFS.  They also claim that you're supposed to be able to feel the difference pretty quickly.  If that's true, I'll share the brand name with you all.  If it's not true, I won't bother.  I'm hoping that it may help me rebound from my relapse a little faster.  Help me get back to my state of nirvana.  (OK, I'm exaggerating, but comparatively speaking, that's what it feels like!)

Friday was the last day of school, and we had a few friends over for a casual pool day.   Everyone had a good time, but of course, I paid for it afterward.  I'm looking forward to the day when I can enjoy these activities without fear.  I'm excited that we're moving into summer, because it's a much more relaxed time for me.  I enjoy having my kids home.

Hugs to those of you who are not doing well right now.  You are in my thoughts and prayers.  I hope the sunshine of the season brings healing to you.

Friday, June 3, 2011

Smelly Politics

I have been closely following the news regarding various negative XMRV studies and the responses from WPI.  I have yet to see a study that truly challenges Dr. Mitkovitz' findings or replicates her study.  I have heard of some interesting and plausible conspiracy theories.  It's all about money, greed, and power, and we, the sufferers of CFS, are being trampled under their feet.

There are several studies underway that should shed light on the subject one way or the other.  But Science magazine wants to undercut all that and jump to an early and ridiculous conclusion by requesting that Dr. Mitkovitz retract her paper.  It is unconscionable.  I have to wonder why they would do this now.  We've been told for almost two years now to let the science work it out.  Why aren't they willing to let the science work it out?

I encourage you to sign this petition that tells Science to retract their EEC.