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Cryptococcus? Anyone else have this fungal infection?
My husband (at age 38) was diagnosed with cryptococcus in December 2024. If you've never heard of it, you aren't alone. It is extremely rare and especially in Non-immunocompromised individuals, such as my husband, who was very healthy until this. A year later and he is still battling this fungal infection that presented as a "large dense mass" in the lower lobe of his left lung. We have never asked what the first measurement of it was, but 4 months into intensive treatment and it was still 10 cm wide. The problem with it being so rare is there is not much for us or his full team of doctors to go off of. His doctors are amazing, but there is just no support or anyone with experience. Has anyone ever had any experience with this or have any knowledge of it at all????? I could go on and on all day and night with more details. He has scans coming up and is facing losing his lung!
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@pmmar1 I am sorry to hear you are going through that. I am glad you don't have symptoms from the fungus. It is absolutely crazy how it can change someone's life just from breathing. They have recently discovered that they think my husband contracted his crypto from a duck. He does a lot of work around a lake, and a duck came in their jobsite, made a mess, and my husband cleaned it up. This has at least given his dr's an idea of how long it was from when he contracted it until he was diagnosed. When they found it in his lung in December of 2024 it was over 11 cm, we just wondered how long it took to grow that large. The doctors were stunned it had not gone to his brain because his blood titer numbers were astronomical.
I hope that things continue to go well for you and that you continue to not need treatment.
@btom Thank you for your nice note. I can't imagine a duck! I thought termites sounded bad and I've never met one in my life. I hope your husband is seeing an Infectious Disease doctor and, if not, a trip to one of our major infectious disease centers, life National Jewish or Mayo and others too, would help him since he is so young.
Being double his age, most people would say, well, at 81 she has nothing to lose. I've had a good life for sure, up to 3 years ago when I was diagnosed, but we don't know our longevity even if we are healthy. My mother lived to 101 and my father, 96. So, in reality, I have years to go. However, neither parent had MAC/BE or a fungal infection. I hope you and your husband have many wonderful years ahead and try to enjoy the days you have in spite of the "speed bumps" we encounter along the way. Best wishes!
@btom I'm 31 years old and a mom of three children, ages 10, 9, and 20 months. After having my youngest daughter, I was diagnosed with rheumatoid arthritis and started taking immunosuppressant medications.
About a year after starting those medications, we moved into an apartment complex that had a lot of ducks and pigeons around the property. Not long after, I developed a very dry, constant cough. At first, I didn't think much of it because whenever I get sick, my cough usually takes 2–3 weeks to go away. I assumed it was just lingering from a cold.
After about four months of constantly coughing, I decided something wasn't right and went to my PCP. They did a chest X-ray and told me everything looked fine. I waited a few more weeks, but the cough still wouldn't go away, so my PCP referred me to a pulmonologist.
At my first appointment, the pulmonologist immediately told me, "You're fine. You're too young to have cancer." I continued pushing for answers and requested a CT scan. That's when they found a nodule in my lung.
When I followed up with pulmonology, I was again told it was "probably nothing" because I was too young to have cancer. I requested a bronchoscopy, but I was told it was a dangerous procedure. I continued advocating for myself because I knew something wasn't right, and eventually, the bronchoscopy was performed.
Initially, I was told that I had histoplasmosis, that I was fine, and that it would eventually go away on its own. I requested a referral to an infectious disease doctor. Pulmonology told me they didn't really think it was necessary but agreed to send the referral anyway.
About three weeks later, pulmonology called me and said, "You don't have histoplasmosis. It's Cryptococcus neoformans. You need to see an infectious disease doctor ASAP." They sent another referral marked urgent.
It took about two weeks to get in with infectious disease. The doctor told me I needed to take fluconazole for six months to a year. However, I was only given enough refills to last about two months.
While I was taking the fluconazole, my symptoms gradually started improving. Unfortunately, I have now been without the medication for about three months because I haven't been able to get a refill. I've repeatedly tried contacting the infectious disease office, but no one answers the phone or returns my messages.
Now, the symptoms I originally had are starting to come back.
Pulmonology repeated my CT scan about two weeks ago. I was told that the lung nodule is still the same size and that they don't expect it to ever completely go away. At this point, I honestly don't know what to expect, whether the infection is still active, or when I can expect this disease to actually go away.
My symptoms have included a severe, extremely dry cough; coughing so hard that I throw up; blood when coughing/vomiting; chest pain, tightness making it hard to breath; extreme exhaustion even after drinking multiple energy drinks and coffee; and severe stomach pain. At one point, the stomach pain and illness became so bad that I lost approximately 15 pounds in only three weeks.
The entire experience has been frustrating because I've had to continuously push for testing and answers, and now that my symptoms are beginning to return, I'm worried about what happens next.
My husband who is not immune compromised had his diagnosis 6 weeks ago and I am feeling very worried that he won’t get better. He has been on fluconozol and not feeling better at all. Like others have said it’s a roller coaster. I have read from other about their being nodules in the lung and masses. His they describe as glass like presentation, the ct scans show white layers. They aren’t going to do a repeat for 6 months. I don’t know how to help him and I don’t know we should be asking the drs. I am worried he will never get better. He is mid 40,s.
I am sorry for everyone else going though this personally or through a loved one.
Btom I would love to hear how your husband is now.
@sormesher I sent you a private message!
@sbeard94 Thank you for sharing that with me. I sent you a private message