I got the results of bloodwork done last Thursday. Luckily my doctor's office manager had no problem making copies of the results and giving them to me without the doctor going over them with me.
My thyroid looks fine, fibrinigen was normal, cbc looks normal although my white blood cell count is on the low side. I show no antibodies for cytomegalovirus and very very low for parvovirus b19. My HHV-6 dropped from 1:320 to 1:180 (1:10 is considered normal) so that's still pretty high. There are more tests I need to get but it takes twisting my doctor's arm and I don't think the name dropping will work again. I can't figure out why my symptoms are so bad. Today I walked to the post office-a mere 2 blocks. As I stood waiting for the postal worker to calculate shipping I felt a little like I was going to pass out. It wasn't too bad but it's always alarming when it happens.
I emailed the executive director of the HHV-6 Foundation again. I'm now pissed off that she has yet to respond to my emails. It's just not right to tell someone they have viral myocarditis and then drop out of site. It's a friggin scary thing to hear. She also mentioned a new clinical trial for people who have this and was going to send the information I prepared to the doctor heading up the trial. I don't care about the trial but I'm getting freaked out over here by my symptoms and no clear direction about what to do. I'm tired of all the guesswork. I guess I thought the bloodwork would point me in a direction and maybe clearly indicate that I should bite the bullet and go on Valcyte.
I'm glad that this illness hasn't affected my hormones levels but I'm alarmed that it could very well be that the virus is attacking my heart and I want some answers. If I could blame my symptoms on low hormones that would have been great and easily fixable.
My next plan is to go ahead and get tested for lyme disease. That would also explain my symptoms and it can affect the heart. I had one test for it which was negative but it turns out that the test is wrong 70% of the time. The test I'll do is through Igenex and is expensive-about $500 but it's 78% accurate. Unfortunately, insurance won't cover it.
Thank goodness I'm selling at least 1 book per day on Amazon.