My search for a new doctor continues. I saw the HIV doctor today for the second visit. I figured I would see if I had a similar experience as the first time.
Most of my medical records had been faxed to him. He wanted to be sure he had my medical records to look over and then decide on treatment and asked me to contact my cfids doctor as well as Dr. Kliman's assistant to stress the urgency of getting the medical records to him. My cfids doctor's office had gotten my medical records to him but he didn't have a chance to look at them so he was quickly flipping through pages during my appointment.
Then he mentions that he's prepared to start Valcyte treatment with me but that he usually prefers IV Valcyte (cytovene) since that crosses the blood brain barrier better. I asked if Valcyte crossed the blood brain barrier (knowing full well that it does after doing research on it). I asked if we could go ahead with the IV (a friend of my dad's has cfids and had IV cidonavir (?) and had good results from it. The doctor ignored my question. I've learned he just ignores most questions I ask.
He decides he wants me to have a functional MRI which is a new, and stronger version of the regular MRI. You do things while in the MRI (for example move a finger) to see how the brain responds. He stressed over and over during the appointment how much he wanted me to have this as this would provide some definitive information as to what is wrong with me. I thought we already knew??? Anyway, I told him I have severe claustrophobia. He ignored me so I tried again with the same outcome.
He was asking his nurse or pa if he should just write a prescription or not for the Valcyte (I guess he was confused because I told him I was approved for patient assistance through Roche for free Valcyte). He didn't bother listening to me as I kept telling him that I already had Valcyte at home. I didn't know how much more specific I could get with him. I HAVE THE VALCYTE AT HOME. I HAVE THE PILLS IN MY CUPBOARD. I HAVE THE PINK PILLS IN MY HOME. It wasn't until his nurse or pa came into the office, heard me and said "you mean you've had EBV levels this high for over one year and you've not started taking the Valcyte you have?" Huh? Did I just walk into the wrong movie? Did you not hear me when I told you my doctor died and I was trying to find a new one? The nurse/pa went on to say "I've never seen as high EBV titers as yours. It means something else is going on. That's why we want you to get the MRI."
Sigh. My cfids doctor has largely ignored my EBV titers and been focused on HHV 6. At one point after I brought up the fact that my titers seemed high he said "oh. You're right! They are really high! How did I miss that?" At least he listened to me.
So this doctor (HIV one) is "convinced" that I have a slow virus. I'd looked that up last week and found scary stuff. This week I asked him what he meant by slow virus. He tried to ignore me but then said MS is like a slow virus. I said I looked up slow virus on the internet and it wasn't good news. They were all fatal. Silence. "Yeah. I guess I shouldn't look at the internet because it kind of scared me." More silence.
I freak out on the way home thinking "what if he is right? What if I have a fatal illness? What if I have MS?" I had to peel myself off the ceiling several times today. Finally I calmed down. I decided to call UCSF which is the only place in the bay area that has the functional MRI machines. They were very helpful. But it's the doctor who has to call their doctor and then set up the appointment. It turns out that it's a closed MRI machine and that it lasts for 90 minutes. There's no way I'll last 90 minutes in a closed MRI machine with my claustrophobia. That would be like telling me to get into an elevator that will malfunction (I've always had a horrible fear of getting stuck in an elevator).
I think I'll move on and find a new doctor. I'd like one who listens to me. Thank goodness I didn't go to this doctor when I first got sick.
This does make the fourth doctor who recommends Valcyte though.
The final straw with me though was when I asked him if there were any side effects or anything to be concerned about when taking Valcyte. He said no-it's a safe drug. Hmm. That would be the safe drug that can shut down bone marrow production? The one that you are supposed to monitor blood count weekly for the first month to make sure you don't develop a low white blood cell count? That safe drug??
I don't get it. He was rude in the way he didn't listen.
I called another doctor's office but have to wait until Monday to find out if I'm accepted or not. The woman sounded really nice and said the doctor is familiar with cfids but doesn't accept that it's a 'real' illness so he does lots of testing to find out what's really wrong.
When did the medical system switch to having to interview to get accepted by a physician's office?
All I want is an internist who is covered by my insurance-who will listen to me, believe me, and just be a good doctor. Like Dr. Kliman was.