I took these a few days ago. Same pic, slightly different views.
These are the things that make people recoil from me in horror if they see it at the store. Not everyone, no. Not at all.
But, enough of them. It's only human. This looks scary and awful, and they don't know what it is or if they'll catch it from me. I don't blame them. That's life.
Out of the various red areas, you can see the scarring from the biopsies at the bottom. The others are just scarring from the infections themselves. The red lumps are infected lymph nodes. They're actually much smaller here than they were before.
Except, that is, for the big huge one at the top. That's new. I shouldn't be getting new infected lymph nodes because I'm taking a lot of antibiotics.
This is what happens when your IgG craters.
Antibiotics don't work much any more.
Here's another thing that happens when your IgG drops: any little thing you'd normally fight off infects you easily. Again, the pic's blurry and hard to see. But toward the top, there's a red mark. If you click it up close, there are actually four, making an arch.
I have no idea how I caught this, except from working in the yard. I asked Dr. C, --Fungal, you think?-- She said, --Looks like it. --Okay, I'll get out the antifungal cream then, thanks.
7 comments:
Oh, my.
Thank you for being so thorough. I hope taking the pictures and writing this up was a bit of a distraction, at least; I know that 'framing' my life helps a lot when things are really rough.
When you are going through something like this, what helps? What do you need from people who love you? Because I do.
Dang, that is awful looking stuff.
And Pretty Lady, I love you, too.
I've been pondering your question all day. And really, I think all I can say is this: Exactly what you're already doing.
For whatever reason, this feeling of virtual hands reaching out through the 'sphere has buoyed me up surprisingly. I didn't expect that.
The writing and pix - I love the phrase you used, *'framing' my life* - certainly, that helps too. That's the part I expected.
The comments and visits here and all that, I find I draw great strength from it. All of them, from the short and simple to the intriguing complicated ones. I learn a lot from all of them. But mostly, I guess, I no longer feel so alone in it all.
I try not to talk to others too much about it all, because I can see it often depresses or scares or frustrates or irritates them.
But here? All who come here come by choice. I feel I don't ever need to worry about offending my readers, or boring them, or making them feel like I'm just whining, when I really do need to simply talk it out some. It's wonderfully soothing.
Kenny, hey, you're back! Yeah, it does look gross. I don't see that part as often as others, because it's on the other side of my arm, right?
So then when I took the pix, I was a bit shocked. Not used to seeing that! Now I understand better why the folks in the stores react the way they do.
I don't actually mind scaring people, so that part's okay. ;-)
Well it looks ugly, but I'm happy they finally have a diagnosis for you. Uncertainty has to be harder than knowing what you're up against.
I'm not sure how serious mycobacteria are, but I have to think it's a better diagnosis than leprosy.
Oh, I'd always rather know for sure. Always.
But you see, leprosy IS mycobacteria. Tuberculosis is mycobacteria too.
Myco's the Big Set. Leprosy is a subset, with several different subsubset forms. Ditto for TB. It may correlate to the family, genus, species levels for other flora and fauna, I'm not sure.
Then you have maybe a couple hundred OTHER kinds of mycobacteria. Most we fight off with no problem. But immunocompromised people tend to get infected with them, just like with odd fungals like aspergillus, simply because we don't have much immunity to fight anything off.
Actually, I'd probably be better off with leprosy. Despite its truly terrible history, it's now 100% curable. The reason people would lose little bits of their extremeties wasn't so much from the leprosy infection, but because of the corresponding nerve damage. Neuropathy. Then they'd break off a knuckle, or scrape or cut or stub a toe, whatever, and not feel it. So it'd get a secondary type infection and just sort of die. Something like that, anyway.
Because the other mycos are much less understood, and because we probably can't do a sensitivity analysis on mine, I'd probably have been better off to get leprosy, because the best antibiotics to cure it are well known.
TB might have been the same, or worse, to get. There are some very nasty resistant strains of TB coming out lately; the effectiveness of current antibiotics is not so good against these superbug TB's.
When I lived in Louisiana, I found out that the last leper colony in America was not so far from me - I think it was between NOLA and Baton Rouge. A Catholic hospital, if I remember right. Beautiful place out in the country. Sweet and tender and filled with gentle care.
It was used to house refugees from Katrina.
Up to then - and maybe again today - it was still open as a functioning leper hospital, not because lepers needed isolation any more, but because some simply preferred to stay there for the 6-8 weeks of antibiotics they'd need to be cured of their leprosy.
I understand that feeling, myself. It's nice to be able to just relax around others, not always be watching their eyes and faces for that look of horror, or guarding where they put their hands. My health problems were always autoimmune or allergic until quite recently; being *Typhoid k* is still pretty new to me.
And Louisiana has a very beautiful Catholic healing tradition. I never thought I'd say that in my life. Chicago's Catholic community overall was quite the opposite, rather vicious in many of its teachings.
But to even just meet one of the nuns at Charity Hospital in NOLA? You felt the presence of grace. Really astonishing. Very worldly people, too, not a naive bone in their body, any of them.
This myco I have, the chelonae- abscessus, is not good. It's relatively fast-moving for myco, and hard to treat. Add on that I'm allergic to too many antibiotics that would work well on it, and immunocompromised, and it's not a good picture.
Looking at what it's doing to my arm, *abcessus* sounds like a good name for it.
The right way to have fixed it would have been to catch it far earlier. Remember way back when? They were just little cysts still when I first told you about them. No infected lymphatics at all, not then.
Because of their clear negligence in refusing to allow me to see a decent dermatologist for a year and a half, as this infection slowly but surely spread throughout my arm - and perhaps farther - my Medicare HMO has indisputably both scarred and crippled my right arm for life.
They also may have killed me.
We'll see.
I just googled mycobacterium chelonae abscessus again.
It's an atypical fast-growing myco. Myco is the genus. It looks like my infection is classic. It hits the immunocompromised; makes subcutaneous abscesses; infects all those lymph nodes - and then, pretty often, pulmonary (lungs) too.
Perhaps as in: weird lung infection that wasn't aspergillus but was never completely diagnosed because Holy Cross didn't do the bronchoscopy they themselves ordered.
M. chelonae abscessus is naturally resistant to most antibiotics. Naturally. Born that way, as opposed to created by the misuse of antibiotics that gave rise to MRSA and company.
It looks like leprosy would have been a far better diagnosis.
Far better.
Hi there .. I had same bacteria .. and ibeing in alot for the last year , many of my cultures were on the garbage also , and i had 4 surgeries ,, 3 times on a picc line with 3 diferent antibiotics at the same time, you can vicit this page to read my history , and get my Dr information he is the best Dr in mycobaterium abcessus he is in texas i travel just to see him , he was the one calling the stupids Dr in florida to give them instruccions of what to do and what to give me ... hugs
http://mycobacteriumabscessus.blogspot.com/
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