Wednesday, November 4, 2009


A number of people have sent emails asking about XMRV testing specifically regarding the study my doctor's office is doing. Since I don't have the energy to respond to emails right now I thought I would post a couple answers to questions people asked.

I did go to my doctor on Monday and got blood drawn for a study. However they are only testing patients who are already a part of their practice. I was not able to find out if there are other doctor's across the country doing similar studies.

The Whittemore Peterson Institute will be conducting a study starting in a month or two. I am fortunate to be able to participate in that. I wish I had the name of the researcher who left an anonymous comment on my blog post last week urging me to contact WPI because of my family history of cancer (my dad has a reoccurrence of prostate cancer as well as chronic lymphocytic leukemia and my mom died 44 days after being diagnosed with a very aggressive form of adenocarcinoma). Somehow I managed to find my way to Andrea Whittemore-Goad who very generously put me in touch with one of the researcher's at WPI. I was contacted by someone from WPI yesterday. I am reminded once again that the words "Thank You" are inadaquate to express the depth of gratitude I feel.

Neither study will provide any answers but I am grateful to be able to participate.

I had to stop the LDN for a few days because it was increasing my sleep disturbance and because the Keflex has been making me feel extra bad. I restarted it at a much lower dose (.5mg rather than 3mg). I'll slowly work up to 3mg).

I'll restart the Artmisinin once I recover from the Keflex. I won't be finished with Keflex until this Friday so I'll restart the Artisinin next week.

Lastly, I've been contacted by a publisher to review a book called "Unexpected Blessings" by Roxanne Black who was diagnosed with Lupus at the age of 15. It is a book of "stories of hope and healing." I received it this morning and took a very brief look at it. It looks like a wonderful book and I look forward to reading it. Once I finish it I'll devote a post to this book.


Renee said...

So happy for you to be able to be a part of this study..
The book sounds very fun to be able to do this!

alyson said...

Congratulations for getting into this study. Take care!