It's been a bad week, energy-wise. Haven't really been able to walk, think, or write. I hope I can write a real blog within the next few days. For now I'll just say that, except for the fatigue, I'm feeling good and gaining weight. And I just made my birthday milkshake, finally!
hi alyson
ReplyDeletegood to hear you are gaining weight. I have a question for you: in an earlier blog you mentioned you did 8 months of kutapressin with Dr Enlander. I am considering trying it out, although I think I would be getting Nexavir.
Can you say whether you thought it was helpful?
It seems you are no longer doing this therapy?
thanks for any info
I had to look up Nexavir, looks like it's the same thing as Kutapressin. I actually was on "hepapressin" which was a generic Kutapressin Enlander had compounded because Kutapressin was discontinued or something.
ReplyDeleteI certainly didn't get the kind of recovery I'd hoped for with the hepapressin injections, but I did get my first flu since I was a child right at the end of the course, and that might mean that the injections did help my immune system. I also took some of his CFS mineral supplements (http://www.enlander.com/treatment.html) Immunoprop, Immunoplus, and Lectrolyte. I thought they helped a little with my muscle pain, but it's hard to say for sure.
I did stop his therapy after 8 months though, it was only supposed to be six months, then he said we should give it longer, and then I kind of gave up and figured it wasn't working, and got tired of injecting myself in the arm. It's been a year since I've seen him, I not really his patient anymore.
He did very thorough blood work, takes time to talk to you and answer all your questions, and seems to be keeping up on all the latest research and everything.
It seems worth trying if you're up for it, but I think the percentage of people it actually helps significantly is small. He was also very good about writing letters to my school at the time so I could sign up for disability. The nurse said he charges like $200 for a letter but they never charged me.
Hope that helps. Let me know if you have anymore questions. Good luck!
Wooo gaining weight! I always take that as a good first sign to getting better haha.
ReplyDeleteYour hair is so pretty and curly!
Hi Alison, you're adorable and your blog is great. I hope you'll feel soon though. :(
ReplyDeleteI've created a site called Wellbook (http://wellbook.org). It's designed to be a place where people with illnesses can reach out to one another for support and track their health. I hope you'll be kind enough to take a look if and when you can (if so, I'd love to hear any thoughts you may have about it) and perhaps link to it on your blog.