This MAC attack is not about a burger or a common opportunistic infection

[crowneagle]

Mycobacterium Avium Complex, aka MAC, is a family of rare bacterial infections weggies may get from the environment, even from their showerhead. After a long process of culturing my sputum, it appears I contracted the Chimaera version of MAC infections. Chimaera got its name by combining attributes from multiple MAC infections, represented by the beast in greek mythology, with the body of a lion, the head of a goat that breathes fire, dragons wings and snake head on the tip of its tail.

If you ever have rapid weight loss, fevers, night sweats, weakness and general malaise, get your sputum tested. It's a very slow growing infection, sometimes taking years to discover. It almost mimics WG. It's usually associated with open heart surgery equipment, but immune compromised people can also contract a MAC infection.

I have no idea what my prognosis is. My infectious disease doctors are being guarded about what they tell me, maybe because the treatments for these infections are so nasty and not a sure thing. Mortality rate can be high but it's also been known to go away on its own. Catching it early is crucial. I appear to be fine for now, but worry about something still lurking inside me.


What Are Mycobacterium Avium Complex Infections? Causes, Treatment, Prevention, and More

https://www.everydayhealth.com/rare-...r%20bronchitis.

[chrisTIn@]

Thanks for this info, Crowneagle!
I also had my sputum tested during last flare (had nightsweats, fever, overall misery).

They said they couldn't find anything in my sputum then, and luckily medication and rest made me feel better at last.
Next time I have such a bad infection I 'll ask for a more specific test though...

[drz]

Our compromised immune system put us at risk for various infections that won't bother most people.

I recently developed a fungal infection in in one cheek that doctor could not diagnose or treat correctly until a biopsy was done. Then it began to respond to correct treatment and is clearing up.

[chrisTIn@]

Did the biopsy leave a scar on your cheek?
What treatment did you get for the fungus-infection?

During my last flare I also developed some disturbing skin spots.
The GP suggested a biobsy, but given the visible place on my skin I descided not to do that.
The spots I had seemed to fade away a bit, but they are still not quite gone...

[richard052018]

Very interested in MAC/NTM and how it impacts our community. For a year now I have had horrific sputum coughs, almost completely throughout the day, sometimes with, but usually without blood. I had a bad bout of COVID in the fall and I got a bronchoscopy at that time where they did all the cultures/tests for MAC/NTM, but they all came back negative, even the 8 week acid fast smear. All came back negative, but my fear is that those tests all happened while on high dose IV antibiotics, which may have pushed MAC/NTM back enough to get negative tests, but not necessarily enough to clear it from my system (of which I hear it can take over a year of antibiotics to clear).

I'm in a situation now with elevated sed rate and CRP, both over 50. I'm back on high dose pred to get through the day, but this isn't sustainable. I don't know if this is a flare or MAC/NTM. Pulmonology assures me this not MAC/NTM, but I am skeptical as beyond respiratory issues, I am not having any of my classic accompanying GPA symptoms (joint pain, elevated HR, ear/eye/sinus issues). I did have a CT where my Ground Glass issues from COVID in the fall cleared, but I have new Ground Glass in my lower right lobe.

Maybe I should consider myself blessed, but my first 5 years of this I was pretty much in the clear beyond prednisone side effects. However, the last year of respiratory issues has me wondering "does Rituxan no longer work for me?", "am I never going to feel better again?". Am I just clinging to something ultra rare like MAC/NTM in my mind because I can't reconcile the fact my GPA is uncontrolled.

Doctor situation is always a mess. They hate it when they think "you think you know more than they do". I had a rheumatologist shut down on me because I demanded she order a complete urinalysis with microscopic examination because protocol for our disease dictates an examination for red blood cell casts. She was like "who do you think you are: I know one thing, I'm a board certified Rheumatologist, and you're not?". I'll never stop advocating for myself though (and that witch ultimately ordered the test I demanded).

Best wishes to all on this board keep fighting the good fight maybe someday soon I'll figure out what's going on with me.