Cryptococcus? Anyone else have this fungal infection?

This is a terrible thing to read about and especially someone so young and healthy, it’s scary how many threats are all around and usually the worst ones are not visible to the naked eye. I guess they don’t have a cure available and as you mentioned they are possibly going to have to remove his lower left lobe if nothing else works. I just wanted to try and offer some hope that if he does lose his lobe he will still be able to live a normal life, there are many, many people here who have lost a lung or lobe, young and old and went on to live their lives, myself included and I wasn’t young when I lost my lobe. I realize that a cure is what you pray for but it is truly amazing what they can accomplish in many ways, he’s a young man and this is also a blessing for a good recovery, I will pray for him and you to get through this difficult period, best wishes.

@btom, an out of the blue serious diagnosis is hard to say the least. But when it is also rare, it can be isolating. I'm tagging a few members like @foonfoon65 @athena2023 @gofishto, who have mentioned cryptococcus and may have experiences to share with you.

The fact that your husband was healthy before getting this infection works in his favor. It sounds like he has had a long stretch with intensive treatment with antifungals. Is he working with an Infectious Diseases specialty team? How are you doing?

@frouke Thank you for responding! It is crazy the threats around us we breathe in every day. The odds of a healthy person contracting this infection is "0.4 to 1.3 cases per 100,000 in the US annually." Cryptococcus comes from spores in bird feces and decaying wood. Of course, it cannot be pinpointed where he got it from, but many of his drs believe it may have come from his job. He is a carpenter and at the time he was remolding a 150-year-old home with a lot of rotten wood.
To answer your question about a cure: He has been on a treatment plan since December 2024. He completed 10 days of "The chemotherapy of antibiotics" in the hospital then and has been on Fluconazole since then. We describe his illness as a roller coaster and these last few weeks he has been extra "down" and it resembles how he was at the beginning of this nightmare. His doctors are worried the medicine may not be working and he has become resistant to the medication or that the infection has "walled" itself off and isn't allowing for the medicine to reach it. He had scans and tests today and so far, we are not receiving good news. The mass is still there and has only shrunk by 1 cm since May. (At the beginning of 2025, they wanted it to be gone by now) His pulmonologist already told us that he would have to lose the whole lung because of where the infection is at. Surgery and removal were always worst-case scenario, but it's looking more and more like that's the road he may be on. We will know more next week.
Another issue we run into with it being so rare and not having a lot of research to go off of is that we do not know yet if there is a chance of reoccurrence.
Thank you for the prayers and kind words. It does make us feel a little better to know what kind of quality of life he may have if he does need the surgery.

@colleenyoung THANK YOU SO MUCH for replying and tagging members! I have searched and searched high and low and cannot find any resources or support on this. It is extremely isolating in an already scary and stressful situation. Then add in being dropped by insurance and having to battle that in the middle of everything. We just feel defeated.
His team of doctors have been great. They collaborate over everything and know his case in and out, but they cannot answer all our questions because it is just so rare and the research is not there for a healthy person. I provided more info about his treatment plan in a reply on this thread. His team of doctors consists of infectious disease (Who originally found it and diagnosed him, which is a whole other story in itself) and pulmonary. He has been through not just the treatment, but a spinal tap, biopsies and so many tests.
I feel like I am desperate at this point just to be heard or understood. No one understands how sick he is because he doesn't "look" sick. But my husband has always been a very hard worker and not only is his health affecting him physically, but mentally as well. He is my "rock" and I have had to watch him suffer and struggle for over a year and I would do anything to make it go away. We trust and really like his drs but with such a rare case and facing a possible lung removal we want to look into getting a 2nd opinion.

I have ABPA and I’m allergic to fungus. I wasn’t put on anti fungals because they have so many side effects. I was on a short regimen of prednisone. I told my doc I didn’t want to be on prednisone for a long time. So far I’m doing okay with my inhalers and nebulizer treatments.

@btom
Where do you live? Have reached out to National Jewish Health? I was a healthy person before having MAC and now ABPA. I’ve never smoked and I don’t have asthma. I’m only 62. I tried to get a referral there but my pulmonologist wouldn’t okay it. I’ve been trying to g to reach out to them about doing a trial. I want someone to study my situation as it’s so rare.
You need to take it day by day. I was so angry with my diagnoses and had to seek help. The not knowing of why is so, so frustrating,

I had a cryptococcus nodule in my lower right lung that was misdiagnosed as cancer. I went to a second opinion at Mary Hitchcock in NH and the nodule (small) was seen on an enhanced CAT scan. The results eliminated cancer, but the nodule was not identified. The decision was to remove a small section of the lower right lobe and it was identified as a cryptococcus, probably picked up from a trip to a eucalyptus rain forest in Australia where it is more common. The surgery went well, without noticeable effects. Another small nodule was detected in the lower right lung after 5 years, which appears benign and not growing after 4 more years of CAT scans. The decision at this point is to monitor it. No noticeable effect on my lung function or lifestyle.