Thanks for validating my concerns. I mean, I was wondering if I was just over reacting, but in my heart I know I have reason to worry a bit.
The surgeon did order prophylactic antibiotics. I saw the order myself. She's a great surgeon, a rock star at Duke University, and this procedure is a cake walk for her. But there are so few doctors that understand that ME/CFS is a debilitating neuro-immune disease and that many (most, all) of us have some kind of immune dysfunction, often to a severe degree. I would feel a lot better if she assured me that she understands this very well, and even better if she said she got the whole HHV-6 connection.
Even the dermatologist doesn't fully grasp it, but I did give her some information on CFS and XMRV and explained it. I compared it to a "slow motion AIDS" for purposes of illustration. She is listening but she has not read anything I've given her "yet", and clearly hasn't internalized all the implications that "X" presents, but at least she knew enough to tell me that in her note to my PCP she will recommend that he refer me to an infectious disease specialist. Whether or not my primary doc will do that is another thing entirely, and NONE of this is going to happen before my surgery next week <sigh>.
Should I call my PCP and leave a message with the triage nurse, who will give the message to his nurse, who will give the message to the doctor that -- well, what? I don't know how to adequately explain this without sounding like a hypochondriac. "I'm scheduled to have my GB out next week and I'm worried about my immune system because my rash is breaking out a second time on top of the first rash which
might indicate that I
might have an HHV-6 reactivation?" They'll never get that through the hoops into the doctor's ears and even if they did, what can he do about it, assuming he even understands what I'm trying to get at?
Should I call my dermatologist (even though I was there yesterday and I already told her and the PA that I'm having surgery next week) and say, "I just figured out that these new lesions are not a continuation of the initial PR outbreak, but actually a
secondary outbreak
on top of the first one and I'm really concerned about having surgery next week (at one of the best hospitals in the world with one of the best surgeons in the world) because I
might be experiencing an HHV-6 reactivation which
might indicate that my immune system is not functioning well"? This would also sound looney since it's almost unheard of to have PR twice and the connection with HHV-6 (and it's connection with CFS for that matter) is still circumstantial. And again, what could they do about it?
I think I may be stuck between a rock and a hard place. If I delay the surgery, I will probably become even more debilitated, since I can't eat much of anything and haven't been able to for some time now. At any moment I could go into an acute attack and need the surgery on an emergency basis and would have to just take whatever surgeon I get at my local hospital. If I go ahead with it as scheduled, I get to have it at Duke with the rock star surgeon and have it done laparoscopically. <another sigh>
Maybe my best course of action is to simply pray and trust that things are well in hand and perhaps solicit prayer from my pastor and other people of faith for an uncomplicated and safe procedure with an uncomplicated and beneficial outcome. I'll do that anyway of course, but otherwise I don't see what else could be done at this point.
Does anyone have any other ideas?
, but I think the rash lasted 4-6 weeks and went away on it's own -- first patches first, last patches last.
