Mycobacterium avium intercultural infection

[vafoodie]

Also called MAI or MAC. Dear friend just diagnosed and while better than previous COPD infection, treatment is a year to 2 years long and heinous. Wondering if anyone has been through it.

[momoftwo]

No experience as a patient with MAI.
In clinical microbiology, we often recovered MAI from respiratory specimens. Less often from blood, urine, various wound infections.

MAI is related to Mycobacterium tuberculosis though MAI can be more antibiotic resistant than MTB and can require an antibiotic "cocktail" over many months. Each patients course is unique and usually followed by an Infectious Disease specialist.

[Lewis Clark]

There are dozens of mycobacterium infections. Mycobacterium avium is one of the more common types.

My wife had a different Mycobacterium infection a few years ago. It took more than six months to diagnose. The final diagnosis required a bronchoscopy and sending the washings to a specialist lab in Denver. It took six weeks for the bacteria to grow large enough to detect and identify, and for the lab to develop a treatment tailored to it. The lab had to do sensitivity testing to see which mix of drugs worked best.

The docs gave her two different relatively new antibiotics, one by pill and one by nebulizer. She almost needed a pic line until her local doc discovered the drug was available in pill form. This drug had gotten FDA approval less than a year before.

During her treatment she had a bronchoscopy every 3 months to measure progress, including one bonus bronchoscopy after she stopped taking the antibiotics. The infectious diseases doctor overseeing her treatment wanted the additional bronchoscopy to ensure live mycobacteria in her lungs didn't die outside her body while the cultures were processing.

The drug mix she was treated with was very debilitating. She had about 3 good hours each day before being overcome with exhaustion. After the treatment ended and her bonus bronchoscopy results were in, it still took over a year before she felt back to normal.

[momoftwo]

Glad that your wife has recovered.
Thank you for posted her story. The lab scientists rarely get to learn about the patient's side. I have wondered why there needed to be multiple bronchoscopies after the pathogen has been determined. And since Mycobacteria are so slow growing, waiting for lab results must be painful. So sorry your wife had to endure such procedures and then an arduous course of antibiotics.
It is wonderful that there are newer agents now. Years ago, there were very few choices.

Best to your wife.

[vafoodie]

This sounds about like what my friend is facing. Her pulmonologist told her that the treatment is so grueling that many people just don’t do it. She said she will be taking two oral antibiotics they will keep her tied to the toilet and one that is administered intravenously.
Any tips for me to pass on to her to keep her spirits up while she’s going through it? I hope she finds a support group of some kind.

[Lewis Clark]

Quote:

Originally Posted by momoftwo Glad that your wife has recovered. Thank you for posted her story. The lab scientists rarely get to learn about the patient's side. I have wondered why there needed to be multiple bronchoscopies after the pathogen has been determined. And since Mycobacteria are so slow growing, waiting for lab results must be painful. So sorry your wife had to endure such procedures and then an arduous course of antibiotics. It is wonderful that there are newer agents now. Years ago, there were very few choices. Best to your wife.

Thank you for your good wishes. : )

A bronchoscopy and subsequent culture of the washings at the specialty lab were the only way her pathogen could be detected. The local lab could detect "some type of bacteria" in the bronchoscopy washings but were not able to identify which one. The six weeks it took to get the bronchoscopy results were indeed stressful.

She had been misdiagnosed with pneumonia (and hospitalized for pneumonia) before her first bronchoscopy. The first bronchoscopy was a last-ditch attempt to diagnose her correctly after all other tests had returned negative results. The pulmonologist had no idea what was going on until then.

Can't say enough good things about the nurse practitioner at the pulmonology office who was driving the diagnosis process. And the nurse practitioner at the infectious diseases office who managed the treatment. They were both fabulous. We've had great experiences with nurse practitioners in addition to these two stars.

[Lewis Clark]

Quote:

Originally Posted by vafoodie This sounds about like what my friend is facing. Her pulmonologist told her that the treatment is so grueling that many people just don’t do it. She said she will be taking two oral antibiotics they will keep her tied to the toilet and one that is administered intravenously. Any tips for me to pass on to her to keep her spirits up while she’s going through it? I hope she finds a support group of some kind.

For my wife the treatment was indeed worse than the disease ... for the short term. Now that treatment is over, she has steadily improved and the treatment was worth it in the long term.

I'd suggest that your friend not plan to do too much at first until she knows how the treatment affects her. If the side effects come at predictable times, plan activities around those times. Keep her eye on the prize at the end of the long tunnel!

I wish her well. : )

[pacergal]

Best wishes for your friend in her recovery.

Perhaps she can try probiotics for her gut health if Dr has not already discussed. It may help a bit with the "tied to the toilet" issue. Live culture yogurt or OTC pills. Not fun when the treatment for the cure causes another problem.

[vafoodie]

Thank you. I will pass all these tips on.