MRSA Support Group

I think their views are often colored by their own experiences - and a lot by how they were taught. It's not like every school delivers the same information. And we pay a certain price for having all the specialists around. I call it "The Blind Men and the Elephant" - very few know what to do when presented with an entire human being any more. You're an age or a gender or a mole or a bone. When they see an infection clear up without further trouble, they get confident that they have all the answers. Or, at least when they THINK they've cleared it up. I apparently had it in my sinuses for years and was told it was just 'hayfever'. Without actually doing a proper culture, they don't really know what the heck is in there.

I have a similar problem with continual illness, but a-msh is chronically low, so I'm always in that state. That's a major immune regulator, amongst other things. In most people, levels come right back up once the infection is gone and everything goes back to normal. It's a (thusfar) little-recognized form of immune compromise associated with a specific HLA-DR immune type. Fortunately, I seldom pick up new infections you could recognize as such. I just stay in a state like the last couple of days of the flu all the time, sometimes better, sometimes worse, never actually good, always debilitating because it never ends.

Some researchers have described this as having one's immune system chronically activated. The immune system's not a simple on/off thing. It activates in different ways, depending on threat levels. Ideally, it would only react to an invader and stop when the invader was killed off. If that isn't happening (either it's chronically activated, or doesn't activate when needed) that's a state of immune compromise. Even if you don't manage to pick up a major life-threatening infection, your quality of life can be heavily compromised. (Small potatas to the guy who sees you for 5 minutes and doesn't have to deal with it all the time, big, big deal to you. Human nature, I guess.)

Maybe the thing to do is see an Infectious Diseases doc or similar who really knows this stuff. Surgeons tend to be pretty good with it, since it impacts their patients more, but are not always so hot with the stuff you can't just slice off. There was a guy who posted here with a clinic in CA, I think. And a few others. They might be more likely to really pay attention to the bigger picture and see if there's anything they can do to correct it. Check back through the posts toward the very beginning.

Thanks for the info.I did have and Infectious Diseases doc but since the first 2 ivs the state has decided my gp has to send me back there on a referal or the er has to have a MRSA type infection to show up at time of one of my many visits there or I don't go.I tried just making an appoint and paying myself they wanted a referal.I can't get one from my doc cause they think I "just need more antibiotics" or maybe give them a break cause it has to be viral since the last MRSA screen was good in the sinus so lets just let you ride it out.4 months later I still have an earinfection I still am hacking I still feel like crap I still have the rest of the symtoms so back to the antibiotics.It is a never ending cycle to just get down to it and get the help I really need.

Over the past 13 years I've had a large part of my abdomin muscles cut away from
9 surgurys with a clown that didn't know what he was doing. I found a doctor in San Francisco that performed a 6 hour surury to correct what the other quack
destroyed. The doctor says that I will still need another 6 hour sugury for further repairs. That last one took it's
toll on me an I haven't come to terms with it. S. Edwards comments are the
best I have heard as of yet. I hope he continues to share his insight.

Damn pao I'm sorry that you had had a hard time with sorry crap that call themselves doctors.I know what you mean when it comes to something finally taking it's toll.
I have only 1 Infectious Diseases doc in my town and the closet one after that is a 3 hour drive and I do not have a working vehicle.I just wish I could find someone to really tell me how to get this under control so I don't feel so crappy all the time.I wish they would take me seriously when I tell them there is a differancce in how I heal and how lond it takes me to heal since the MRSA, and I can't seem to find anything online that I can bring in to discuss with my docs to get them to listen.

I really can't pretend to have all the answers (tons of opinions, though!). Seriously, do go back to the first couple of months after the board started. There were several interested physicians posting. One in particular is a serious activist on this topic.