Wednesday, May 18, 2011

Back Up!

I'm back up. I took my blog down for many reasons. I won't go into details except to say a lot has happened and it feels too personal to talk about in a public setting. Which brings me to my next point.

Originally I had decided to stop blogging altogether about this disease and instead develop two new blogs. I'm still planning on starting the two new blogs but will keep this one to discuss treatments. However, I no longer want to share much, if any, personal information in this blog.

The past almost 4 years have been a long extended journey into the dark night of the soul. I needed to talk about what it was like to lose my health, career, finances, etc...not to mention dealing with the myriad of symptoms that I deal with on a daily basis.

I don't feel a need to discuss the dark night of the soul except to say it has led to a deepening of a sense of spirituality thanks to Toni Bernhard and my MD. I feel like I'm in a place of rebirth and rebuilding my life out of the ashes. While difficult I'm grateful to have made it to the rebuilding and redefining myself phase.

The reason I want to keep this blog is that I feel hopeful about all the research that is going on in the M.E. field. Regardless of whether xmrv or some other retrovirus turns out to be the cause we still have to treat the coinfections associated with this disease. Because that is what kills us. Similar to HIV. It's not the HIV virus that kills per se but rather the secondary infections.

I'm going to be trying some new treatments. Treatments that are evidenced based rather than guesswork and treatments based on testing resulting in an individualized treatment plan.

I saw an infectious disease MD who used to be with Stanford. His diagnosis was spot on. Rather than diagnosed me with a poorly defined name like 'chronic fatigue syndrome', I've been diagnosed with:

1. Arthropod Born Disease of the Central Nervous System
2. Myositis and Myalgia (ICD9: 729.1)

I'll be doing a high dose of antivirals along with a drug for chemotherapy along with a mitochondria cocktail. I'll start once I get my test results back. The tests are pretty extensive something I've wanted for a long time.

Here is some information about Myositis and here and here. It explains many symptoms I have including difficulty swallowing.

Here is some information regarding Arthropod Born Disease of the CNS. Also here and here.

I have taken down all my previous posts but will be providing a summary of my treatments to date.

I'm starting two new blogs. One about the birds who visit the backyard and the other focusing on Jung. I have to think of a name for the Jung one.