partyhat

It's probably not significant-- pyruvic acid labwork needs to be handled in a very specific way, and many labs don't do it the right way, which causes an inaccurate high result.

I just got back from Mayo's Pediatric Pain Rehabilitation Program. I had many of the same concerns that you all do when I went, but it worked for me! I went in a wheelchair and using a feeding tube, and left walking and eating everything by mouth. We're fairly sure I have mitochondrial disease, which is progressive and life-threatening-- so I am certainly not one of those kids that would naturally improve anyway. I am not cured, and I still have limitations, but my limitations are minuscule compared to what they were. There are still some things about the program I'm not a huge fan of, but as a whole, it was miraculous.

Oh my gosh, what are you on that's $900 a month? My mito doctor has me on 300mg ubiquinol coq10 (a better-absorbed form) through Swansons Vitamins ($30 a month), carnitine which is a prescription, 100mg alpha lipoic acid ($4 a month), and a B-100 complex that is $1.50 a month. So a total of $35.5 plus my carnitine copay.

DDAVP has been amazing for me... I had pretty severe hypovolemia and was dependent on IV fluids, and while DDAVP certainly doesn't work as well as an IV, it works well enough that I've been able to completely stop the IVs-- eliminating the huge risk of a central line.

Hi,

Have any of you tried hypodermoclysis? It's saline subcutaneously, which apparently gets absorbed into your veins without the need for vascular access. It's not a well-known technique, but it sounds perfect-- there's no infection risk or need for a port, you just insert a butterfly subcutaneously when you want the fluids. There's also an enzyme called hyaluronidase that can be injected before-hand to let the saline be absorbed at a faster rate.