Sunday, April 25, 2010

Time out

Stem cells, stem cells, stem cells. That's all I've been thinking about this week and I've finally blown a fuse in my brain or something. So there will be no more stem cell talk tonight. I just spent over an hour trying to hash it all out with my Dad. He said I should make a decision tree. I mostly just cried. Finally we decided that the best thing for me to do is just forget about it for a week, stay off the forums, stay off wikipedia, and then come back to it and see how I feel. In the mean time, I'd been e-mailing with Joey who blogs at Dashed Hopes and Measured Steps, and he's done a very good post about stem cells that pretty much covers everything I know and am considering.

To make the distraction complete, my Dad suggested crossword puzzles should take the place of stem cells as the focus of my mental energies. I think that sounds awesome. My boyfriend and I are doing the Crosswords LA Tournament this Saturday, doubles division. So for a week I'm going to pretend I don't have CFS and act like the most important question I'm facing in life is "What is a six letter word for 'not lost'?"

Well, I'm not going to completely forget I have CFS. I'm still going to see that new acupuncturist on Wednesday. And I'm still going to look into some of the things Dr. Cheney talked about:

1. Mold - I should get my apartment checked out by ERMI dust sample
2. Water - He's been testing the IVRT reactions of different kinds of water. The best kinds are "structured waters" like Aqualiv and Penta. But the really best kind is spring water from Iceland. Other spring waters are neutral. The worst kind is distilled...which is all I've been drinking. Oops.
3. EMF's - I need to get a real phone and use a mic and headphones when I'm on my cell. He's also been testing IVRT reactions to cell phones.

He also said I should switch from glucose to dark chocolate as part of my pre-treatment for the cell signaling factors, but I've already taken care of that. :)

The good news is my echo terrain map did improve after six months on cell signaling factors, as expected. My methylation cycle is better, for one. My stroke volume was higher but he said not to get too excited about that, it can vary. If I'm going to feel any change in energy though because of this, it won't be until after the first six months so...anytime now...

I'm going back to LA tomorrow. My mission to have my six month follow up with Dr. Cheney and hang out with my parents for awhile is complete. I might have gone back Friday, but I wanted to stay the weekend because today was my brother's 21st birthday. For some reason I forgot he'd probably want to spend it on campus with his friends.

I guess I wanted to be around for his birthday this year, because last year when my parents asked me to come home for it, I didn't. This same week last year, I had my six month follow up in New York with Dr. Enlander. My appointment with him was Wednesday April 22, so my parents suggested I come home after that for Dave's birthday the 25th. I said I would play it by ear, but I ended up not going. I also wasn't too enthusiastic about my follow up with Enlander. I hadn't noticed any improvement in my energy levels from the hepapressin injections I'd been giving myself. What was really on my mind was Dr. Cheney's upcoming presentation in Virginia, also April 25th, about the results he'd gotten with cell signaling factors and ...stem cells. I was so eager to hear about it I even thought about going from New York to Virginia myself, but I didn't. Instead I stayed in New York and got swine flu.

Well, I can't say for sure it was swine flu, I never got tested, but it was all over the news the day I got it, the symptoms matched, and it was the first time I'd gotten sick in at least three years. I was meeting up with a friend from college I hadn't seen in a long time. "I'd give you a hug," she said, "But I think I'm getting the flu." “Oh, I don’t care!” I said, “I haven’t had the flu in years. My roommates get it, it passes me by.” I thought this was because I’d been eating such a healthy diet, avoiding sugar, drinking vegetable juice every day, but now I believe this was just typical CFS immune response. No colds or flus--just bone crushing fatigue. So I gave her a hug and we went out to dinner. And, as I've said here before, I've had three more flus since then, which may or may not be a good sign.

Incidentally, I also have April 25th marked on my calendar as the three month anniversary of this blog. When I started I didn't know if I'd be able to keep it up that long, but looks like I have. That at least is a good sign.


  1. It sounds like a good idea to take a break from everything. It's okay to take your time with deciding whether or not to do stem cells. It's a tough decision. Even though I've pretty much decided to do them I still find myself going back and forth.

    My doctor, who is in contact with Dr. Cheney, sent me Dr. Cheney's stem cell protocol. I'm excited to be able to start on the cell signaling factors and other things he recommends (I won't post or share with anyone). I'm even more encouraged after reading you showed improvement on the echo terrain map. I hope you get to experience the improvement soon.

    If you have any questions about mold(or anything else) feel free to contact me at

    Hang in there....

  2. Yay for maintaining this blog! I know I'm a fan :).

    I'm glad you are taking a brief break and good luck in the crossword tournament!! I wish they had those here!

    Hope all is as well as can be!