“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

Tuesday, February 15, 2011

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!


Anonymous said...

Shelli ~

It's good to hear you are doing pretty well so far! You know we are all rooting for you. And that with your success, we will all run to our doctors to get whatever it is you are taking! :-)

Have you tried MSM? I have little doubt that it is one of the key reasons I do as well as I do. Among other things it increases oxygen in the bod... and we pwc's are lacking in that. It is totally non-toxic. Take it with vitamin C for proper absorption. I get mine wholesale from Rich Distributing.



Rachel and Pia's Cottage said...

Hi Shelli,
I am glad you are faring well and glad you are taking supplements....especially the B vitamins. My methylation treatment includes these 5 - a multi vit that is copper and iron free, a Folate, a Folate and B-12 combo, a sublingual B-12 and phosphatidyl serine complex(for brain fog)
It helped tremendously when I started 2 years ago, but I am still up and down. I take many other supplements and feel they do help too. I am fortunate that my pains were kept to a minimun. Hip pain that came and went(10 years), but when it was here it did hurt quite a bit. I haven't had an episode of that for months now. ( I still get a bit of neck, wrist, knee and arm pain, along with sensitivity to touch, among other things) I was diagnosed with lymes and a mold problem. Right now I am trying to watch what I eat and no sugar, which is very hard. I wish you all the best in your healing journey. Fondly, Lori

Elaine said...

Oh its good to hear that so far things are going so well for you! I've been thinking about you so much.

I, too, am cheering you on and praying that this will be the "thing" that makes the difference for you:)

Happy belated birthday to you. Aren't birthdays fun? It sounds like you had a wonderful one!

Hope things continue as they are so far and no side effects for you!


Sue Jackson said...

Shelli -

I'm so far behind on blogs - it sounds like you've survived your move OK?? And happy belated birthday!

Glad to hear so far, so good. Keep us up to date!

We had a nice family Valentine's Day, too - a steak dinner and lots of chocolate goodies!


Renee said...

Hi does sound like the move went well...everyone has adusted and all.....Are you in a new town too? Also, Sue had shared along with Joanne that the anti-virals for XMRV can cause herxing too..I was defining what that was today.. Maybe some of your increased symptoms are from that? Hope whatever it is passes quickly and you continue to do well on this new treatement plan.
A belated Happy Birthday too!

Shelli said...

Thank you, friends, for your support. I'm continuing to feel sleepy -- I think I'm entering the worse before better stage. We'll see!

Lori -- Thanks for the info. My multi has iron in it, which I need because I have a tendency to get anemic. I'll have to take it opposite my b12 and folate.

ME_CFS_unite said...

Best of Luck to you, Shelli. As a 23 yr. ME/CFS/XMRV+ myself, I look forward to hearing what you are on and if it helps so I can talk to my Dr about it... I have also added your blog to my blogroll and I also take many supplements and have found some symptomatic relief with LDN, but I know that will not kill XMRV. Belated Happy Birthday also, I have a funny feeling that this will be one you will NOT forget.. wishing us ALL a Better Decade.

May I also suggest that you consider adding a FREE way for people to subscribe to your blog via email on your blog. Many people do not use RSS feeds.

Julia Rachel said...

This is an exciting time. I commend you for not saying what meds you are on. My son and I are both starting....and will Blog about it. HOWEVER, it is important that until a Scientific Study is published, that patients do not run to their doctors and ask for specific medicines. There are 5 drugs to choose from and a Clinician who knows you, your disease and the drugs needs to give each patient the correct mix and match. My son is going on "one Mix"....while I am going on "another". We are ROOTING FOR YOU. Six Kids? LOVE IT!!!

Shelli said...

About ME -- Thank you for visiting! And I learn something new all the time. I went to feedburner, and I hope I set it up right. I have heard of many people seeing some improvement with LDN. It is my next step if this experiment doesn't work.

Julia -- I agree, it would be irresponsible to put too much specific information out there. I like the idea of people doing their research, like I did, and coming to an informed decision with their doctor. Thanks so much for rooting for me! The support is invaluable.