Don, thank you so much for asking. He actually got to a REAL infectious disease doctor! And the rescheduled appointment with the top infectious disease doc at Montefiore is tomorrow afternoon, so he'll be able to get a second opinion.
But... the opinion, right now, is that fevers that high but being intermittent are rarely caused by infection - and Gary doesn't have the history to look for any of the rare diseases that cause them (he hasn't been to the tropics in South America or Africa ever). They are generally caused by something called "Central Fevers," which, yay, are neurologic, caused by a dysfunction of the hypothalamus. Yippee.
That ID doc thinks he should continue to pursue it through the Montefiore guy who can co-ordinate with the neuro there, and that it is probably worth doing the spinal tap just to make sure it is not some really weird version of meningitis despite there being no signs of it on the MRI, and maybe the Montefiore ID doc has other ideas.
So... solve the fever problem, and we probably solve the CH problem. But I've been searching high and low on central fevers, and even if they're caused by an aneurysm or brain surgery, there's usually no treatment for them. I've been looking up research and e-mailing the people writing it, but no luck yet. Found one case caused by nexium, so we had him stop the protonix for five days - but the fevers continue, and the nexium guy's fevers resolved within 20 hours of stopping the nexium, and it's been almost 6 days off the protonix now, but he's already throwing up blood again, so we went ahead and put him back on the protonix again.
Northwestern University is doing a trial of a new cooling blanket to help people with central fever problems. I just never had the right terminology to search with before. But I'm not encouraged by what I'm finding.
...So even though the 02 doesn't work for Gary anymore, we still haul around an E tank just in case.... so now maybe he'll get to travel around with his "blanky" too. Just what he needs, right?
I think the neuro wants to start him on the lithium.... but we're both feeling really discouraged, because it's seeming more and more like his brain just isn't working right and he doesn't have technical clusters, but "cluster like" headaches that are caused by something else (which is why no drugs are working and 02 isn't working) - and right now, we don't know how to find a neuro that knows how to find or fix that "something else."
We just know that Gary needs some kind of relief, and it doesn't seem to be pending. His quality of life is so low. Sadly, it's not just the pain. He's just not ever comfortable in his own skin anymore, because these fevers combined with his gastro problems just make him feel like he's got the worst flu ever all the time. Fevers of 104/105 degrees 2-4 days a week will do that to you.
So he's really crappy, and at this point, I've looked up a naturopath I'm going to take him to. At this point, maybe a witch doctor, as Gary puts it, is the way to go. As long as we're still seeing the others, it sure can't hurt. At least the guy has lots of letters after his name and part of his training was at Harvard and Johns Hopkins.
Everyone - I sure hope there's a lot of uncrappiness happening!!!!!! If I can't find smiles in Gary's health right now, it's sure nice to find smiles in what's happening in yours!
Laurie
P.S. He had to stop the Depakote - it was making things a lot worse. He also had to stop the verapamil - it almost killed him, and at just 520mg. His blood pressure dropped to dangerously low levels. I think the neuro is going to try lithium next (finally). At least it may help with the depression.
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