I met with my doctor today to discuss the next steps. I had finished my six months on Valcyte on Saturday and was expecting to feel better simply by being off Valcyte but surprisingly I felt a little worse. Because I started to experience improvement during month 5 he wants me to continue Valcyte for another three months.
I'll be starting a treatment called Aviptidal (VIP). It's a new treatment that's geared mainly toward biotoxin illness. Since I have bloodwork that indicates that's partly what is going on I'm going to give this a try. In addition to the VIP I'm going to order a drug that bodybuilders use (I forget the name). It's supposed to help increase Melanocyte Stimulating Hormone (mine as well as most ME/CFS patients are low). MSH is an anti-inflammatory, regulatory hormone made in the hypothalamus. It controls production of hormones, modulates the immune system and controls nerve function, too The drug is currently undergoing clinical trials but the bodybuilding community discovered it so its available online. I guess it also makes people tan.
He diagnosed me with Postural Orthostatic Tachycardia Syndrome and prescribed a beta blocker. Hopefully that will help. For the past week I've been having intense and frequent (as often as every 5-10 minutes at times) heart palpitations or maybe its tachycardia. He said that in my case adding more salt won't help.
We revisited lyme and I'll most likely do Bicillin injections in the future (after Valcyte).
I will also start nebulizing glutathione once I get the it from the compounding pharmacy. I had a treatment today and thought it was mildly helpful. This will help with any leftover mold stuff and also helps with detoxification.
I really like my doctor. I keep forgetting that my brain has either inflammation or damage or both. This affects the hypothalamus, pituitary gland, my nervous system, etc...
Also, the reason we have such a hard time with sleep is because the brain doesn't have enough energy. We actually need energy to rest which is something I find interesting.
I decided to radically change my diet and am considering either the macrobiotic diet or the 80-10-10 Diet (by Doug Graham) which is basically a raw foods diet. I know nothing about the raw foods diet (80-10-10) but my doctor said this diet has significantly helped people with cfs. Changing my diet will be challenging but if it will help then I'm all for it. I'm going to go slow though.
After the doctor appointment we drove around for a little bit (his office is over an hour away from my home) to check out potential towns to live in. And then we went shopping at the outlet mall on the way back. We only visited 3-4 stores briefly but it was fun.
It's been a long day. Tomorrow I'll restart Valcyte.
I'm encouraged by the new treatments on the horizen like VIP and this MSH medication. I think they are very promising treatments-not a cure but having low MSH is not good.