“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

Thursday, July 28, 2011

XMRV Treatment: Five Months

I have been on ARVs (anti-retrovirals) for five months now, and I have experienced no side effects.  I continue to see a steady improvement in my health.  I would say that I have gone from about 20-25% at my lowest in February to about 35% now.

The greatest improvement has been in the symptom of fatigue.  It used to weigh on me like a suit of weights, making every movement and activity feel so much more difficult than normal.  The lifting is like the sun breaking through the fog, and it has had a huge impact on my overall mood.  It's been better than any anti-depressant I've ever tried.

My pain has been lessening as well.  It's hard to tell if my cognition is improving.  Sometimes I think it is, but it is the first thing to go when I overdo it.

One challenge I face as I start feeling a little better is which activity to add to my life.  There's a whole list of things that I want to do, that I should do, that I once dreamed of doing.  I haven't had to prioritize in a long time.  Everything was off the table before, and I chose my activities based solely on necessity and urgency. 

Suddenly, I have choices in front of me.  And each day I seem to choose a different combination based on my whims.  One day, I spent a little individual time with each of my kids.  One day, I went to a water polo tournament (about two hours).  Another, I had friends over to swim.  And another, I went to a party at a friends house.  See?  One or two "big" days a week, and the rest of the time I'm recovering or preparing for it.  I'm not sure I'm adjusting to my new healthier me very well.

I feel like I have found the perfect regimen for me.  I have the ARVs, which I believe are stopping the disease.  I feel like my body is broken, and that the essential oils and supplements that I'm taking are helping to repair it.  And I am able to exercise in the pool most days, which I feel is strengthening my body.

I will write a new post soon about the essential oils I'm taking, because I love them.  It's the first time that I've found something that helps with my symptoms.


Elaine said...

Oh Shelli,
What terrific news this is!!!!! Makes me want to run out and get tested:)

I am so thankful for your improvements!!

Praying it will continue and looking forward to knowing what you are using.


Renee said...

What great news Shelli...sounds so fun for you right now. I am really looking forward to hearing about the essential oils. I know someone else who uses them and finds them helpful...I am curious about what works and how!

Annie said...

Hi Shelli. Just found your blog through Sue Jackson's. I'm blogging about my CFIDS journey with my darling daughter at I didn't even know it was possible to take medication for XMRV. and am excited to hear it. I will watch your blog with interest. Very best of luck and I sincerely hope you will be able to enjoy your life more with each day.

Alison said...

What a difference an extra 10% can make! Glad to hear about the extra things you've been able to do.

Anonymous said...

so glad for your improvement! what anti-retroviral(s) are you taking?

Anonymous said...

I'm glad to hear about your improvement. I've been on treatment for 18 months and I'm at 70% . I hope you continue to get your life back. So blessed and so thankful. I wish everyone could be helped some day.

Anonymous said...

i've been on the ARV's raltegravir and tenofovir (i was on AZT but stopped due to side effects) for over 18 months. i was VERY sick and had had CFS for nearly 2 decades.

i am also slowly improving in many areas.

Sue Jackson said...

I think you are doing it just right, Shelli! Doing fun things with your friends and family is exactly what you SHOULD be indulging in when you are able! Good for you!

I hope the improvements continue - I am thrilled for you!!!


Anonymous said...

Hi!! I too have XMRV but my doctor has not put me on any treatment except supplements. What essential oils are you taking? Thanks and I'm glad you are doing well. Debbie