I’m so brain foggy today god help meeeeeee.
I have a simple request for the awesome people of tumblr! (: Do any of you have a super awesome ME/CFS or Fibromyalgia doctor that you’d like to share that has really helped you out? Please leave the name and location if you do! It might be helpful to others who are still looking for a decent doctor.
Just wondering if ME/CFS peeps have experienced weight gain, weight loss, yo-yoing, or stayed the same throughout the length of being ill?
Personally I’ve gone up and done, but definitely gained more weight than lost. It sucks because I can’t exercise as much to lose the weight.
So everyone! I have a lot to update you all on! I made the trip up from Georgia to stay in South Jersey with my Grandma so I could go see Dr. Levine in New York City. Today I went and saw her and it could not have gone better!
She looked through my previous blood work and noted that my Epstein Barr virus titers were high. My HHV 6 levels are also high. So we discussed what lead to my diagnosis, you know all that general info and then we talked about treatments! She wrote me scripts for low dose Naltrexone, Valcyte, supplemental IV’s, and I forgot the last thing. Haha.
But anyway, I knew the EBV was an issue but I didn’t really know too much about the HHV 6 until I looked it up! Apparently…
HHV-6 can persist in the brain tissue long after primary infection and after evidence of the virus has long disappeared from the plasma in the circulating blood. Therefore, direct evidence of chronic infection is not easily attainable by standard laboratory tests. In other words, even though there is no DNA for HHV-6 (or other herpesviruses such as EBV) in the plasma, it is possible that one of more of these viruses are in fact smoldering in the tissues and throwing off inflammatory cytokines.
So I thought that was interesting!
Oh and I got a photo with Dr. Levine because I’m weird like that. She’s awesome though, and if you have CFS/ME and have the chance to see her, I’d definitely recommend her. She knows her stuff.
Excuse how incredibly flushed and puffy my face is. Also no makeup, because who wears makeup to the doctor? Yeah.
Anyway, that’s how that all went. I’ll keep everyone up to date on how I do on the valcyte, naltrexone, and the nutritional IV’s!
Hey everyone! The CFSAC meeting is being livestreamed! Here is more information regarding all of that. (:
URL FOR THE LIVE VIDEO FEED: The streaming video will be offered at http://www.hhs.gov/live. You can check there on Tuesday to download the latest version of Adobe Flash Player and test it out. The more viewers, the more evidence for HHS that the investment in streaming video service is of value to us.(Audio will be available at 1-888-677-1834 . Passcode CFSAC 2012.) Reportedly, HHS will post videos of the event online later.
Hey ME/CFSers! (Yeah, I don’t know how to address all of you! xD Sorry! )
May 12th isn’t too faraway now! I know lately this blog has been a bit drab and boring with the weird 90s videos that my mother has been posting. (They really are helpful, I promise!) But hey! Get out there on May 12th!
The internet is our oyster people!
- Post a FB banner on May 12th like this one:
- Tweet informative ME/CFS videos.
- Pin ME/CFS related things to a board on Pinterest.
- Post on Tumblr!
Just get the word out somehow! We need more recognition of this terrible disease if we want to get closer to a cure.