New MAI diagnosis with also a fungal infection

Posted by tamilyn @tamilyn, May 21, 2019

In late February I had the flu then pneumonia then sepsis. My lung Ct showed several nodules and a large mass in my right lung. I was in the hospital for 9 days and on 2 antibiotics, steroids, albuteral neubuizer treatments and since the mass decreased in size on a follow-up CT after only five days, was determined to be just the pneumonia. There were some tree-in bud noted on the CT report so my pulmonologist had me repeat the CT in 6 weeks. There is still some inflammation from the pneumonia but also some new tree-in-buds noted so I had a bronchoscopy a few weeks ago. The cultures are positive for M.avium-intracellulare group and Aspergillus terreus, which is a not so common fungus also found in dust and dirt. I have a follow-up appt with the pulmonologist and he has referred me to the infectious disease doctor for the fungus infection. I was wondering what is the initial medical treatment for the MAI and if anyone else has had the fungal infection along with the MAI. Thank you.

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rocky1957 | @rocky1957 | Nov 15 7:27am

I also have aspergillius detected but just watching to see how it progresses for moment as treatment severe I was told

rocky1957 | @rocky1957 | Nov 15 7:40am

Treatment for aspergillius please & how it affected you

rmoore901 | @rmoore901 | Nov 16 9:07am

In reply to @rocky1957 "Treatment for aspergillius please & how it affected you" + (show)

@rocky1957 when I tested positive for Aspergillis I was already on the big 3. My ID Dr added Cresemba to the mix which was rough. It was only 12 weeks so I was very happy when I was able to discontinue it. I took it right before bed with a light snack (shortbread cookies!) to help lessen the nausea. I had additional labs added to monitor while I was on it. I have dry BE so did not provide any samples after completing the meds. My new ID Dr made a statement indicating that she likely wouldn’t have treated me if I was under her care at the time. Sometimes it’s present but doesn’t require action so different points of view on how to approach it.

irene5 Irene Estes | @irene5 | Nov 17 9:15am

@tamilyn I have had both. I was treated for MAC for years and then aspergillosis fumagatos with Vfend and then Cresemba. Unfortunately I still have them but am only on medication for bronchiectasis as my lungs are “illing” from years of medication. Irene5

pmmar1 | @pmmar1 | Nov 17 10:49am

I have all 3: MAI/BE/a rare Apiotrichum Mycotoxinsivorans lung fungal infection and am on no medications for the past 3 years. I attempted the Big 3 and Voriconazole for the lung infection but had some major side effects.
I also am prone to many hemoptysis episodes.

Although recent CT scans from NJH show a "slight" increase in all three (after 3 years off treatment) I am living a functional life with enjoyment and believe that treatments for my diseases are far worse than the diseases themselves and that medications taken to "slow the progression" of the disease, in my case, is not in my best interest.

I do believe in airway clearance, daily exercise in the form of walking, masking when I am in large groups of people, and following the advised protocol but not to an extreme.

I also believe in taking the focus off the fact I have these diseases and the need to keep busy with outside interests, including art illustrations, reading, and writing. This helps me as I live my life beyond disease.

We are fortunate to be able to make our own decisions and a lot depends on any symptoms and comorbidities if they exist. I would not know I am as sick as I am if it were not for the 6 month spirometry and CT scan results and the monthly sputum findings over the past 3 years.

I am living my life as much as possible, knowing my life today may be "temporary" for now, but also knowing that, even without health issues, we can never determine how long we will live anyway.