Re: Re: tests for osteomyelitis of jaw

[Guest guest]

Hi Barb,

Do you have a link for this? When I google it all that comes up is some sort of game.

Thanks

[infections] Re: tests for osteomyelitis of jaw

Hi Penny:SO, are you on any abx now? Or doing without them? I've been absent form the list for quite a while becuase I'm feeling so good, living my life, riding my horses...I continue to take the Wei Chi..I have had a few symptoms come back.. tinnitis off and on.. a right eye problem.. none of which I've seen a Doc. for ( WHat for I say?)I'll see what happens over the next few months when I increase the Wei Chi.Barb>> For me it was a combination of dxs. Images from CT scans (clearly showing holes in the bone in my jaw) and bone biopsies which tested positive for organisms which should not be living in bone. So you need radiologists familiar with bone scans and infectious disease docs/labs that can get bone samples and indentify the organisms in

[Guest guest]

Hi Barb,

Thanks for asking. I'm still on penicillin vk and cipro. At this point I can't tell if they're doing much or not.

My recent CT scans showed a lot of thickening in my right sinus and a more modest thickening in the left.

I've been on amphotericn B with a variety of other anti-fungals for way over a year now and nothing's making that thickening go away. :-( That's why the new doctor I'm seeing wants me to see an ENT for futher testing to see if there's some "underlying infection". (I kinda wanted to say "duh" but at least he's thorough so I'm letting him draw his own conclusions in his own time.). He also tested me for allergies and discovered I'm allergic to mold so that's good to know. But like I said, the Amp. B clearly hasn't addressed the infection in my sinuses.

The neurologist I'm seeing put me on a migraine preventative which has given me pretty crazy brain fog (like I can't remember names at all, as well as other things.) She also put me on Elavil to help me sleep. The improved sleep has made a big difference. I've been extremely sleep deprived for quite a while from having to sleep in a semi sitting up position because lying down flat triggers drainage which triggers migraines every morning.

The neurologist told me something interesting. She said I have developed a "migrainous brain" and that it's not the specific substances or events (like alcohol or barometric pressure) that trigger the migraines, but change itself. Basically my body reacts to any kind of change with a migraine. That makes total sense to me. So I've got to retrain my brain somehow. She said it's taken a long time for me to get here and that it will take time to get it back to normal. I hope that's possible. But even if I can do that, it doesn't address the infection I have.

So that's where I'm at medically. Personally, there's been lots of change as well. I've moved and have lots of new-house things to deal with. My kids are off to college. One in UCLA, one at UCSD (the latter is kind of back-and-forth, in-and-out of the house). I even have a new roommate who is draining me of most of the little energy I have.

So there have been big, exhausting changes here on a personal scale (and I haven't even mentioned the economic worries we're all facing).

But now we have big changes on the national scale as well. I doubted I'd ever see the Berlin Wall come down in my life time, but remarkably, it did. I also doubted I'd ever see a black man become president of the United States, but now we have. Once again, it demonstrates that anything and everything is possible...even a cure for this disease. After witnessing these historic events, I can honestly say I've lived a full life, no matter how long or short it is.

From: Barb Peck <egroups1bp@...>Subject: [infections] Re: tests for osteomyelitis of jawinfections Date: Sunday, October 26, 2008, 6:05 AM

Hi Penny:SO, are you on any abx now? Or doing without them? I've been absent form the list for quite a while becuase I'm feeling so good, living my life, riding my horses...I continue to take the Wei Chi..I have had a few symptoms come back.. tinnitis off and on.. a right eye problem.. none of which I've seen a Doc. for ( WHat for I say?)I'll see what happens over the next few months when I increase the Wei Chi.Barb>> For me it was a combination of dxs. Images from CT scans (clearly showing holes in the bone in my jaw) and bone biopsies which tested positive for organisms which should not be living in bone. So you need radiologists familiar with bone scans and

infectious disease docs/labs that can get bone samples and indentify the organisms in