Chronic Invasive Aspergillosis of sinuses
From the time I was seven years old to the age of twenty-three I lived with my missionary parents in South/Central Africa. When I was thirteen years old I contracted the disease of malaria. It was not my first time to have malaria. But that time was different. I did not seem to recover completely. I continued to have low-grade fevers, extreme fatigue, and generally felt unwell. These health problems continued for years and years. I went to the best doctors that were available to me there in that part of Africa. The doctors were mystified. One doctor even claimed my problems were all in my head. After my family returned to the United States my health problems did not improve. On the contrary, I seemed to get worse. In Africa I had some sinus and allergy problems, but they did not seem to be 24-7 problems. After moving back to the States my allergies really began to bother me day in and day out. I couldn’t breathe very well to sinus congestion. And the noise from my nose affected my sisters so much that they also could not sleep at night. When day I stuck my fingers up my very “clogged” nose to see why I was so unable to breathe. I felt significant balls. After looking in the mirror with a flashlight and doing some research, i diagnosed myself as having serious very visible nasal polyps in both nostrils. I made an appointment with a doctor. The doctor was very unhelpful to me. He prescribed allergy medication and steroid sprays. My sinus issues and allergies and nasal polyps did not improve. By 2023 I was unable to breathe in or out of my nose. My nasal polyps were completely obstructing my breathing. I could not sneeze because of the obstruction. I had constant post-nasal drip running down my throat. Sometimes I would snort it into my mouth. I wondered why it was grainy. And I would frequently choke on balls of substance when I attempted to sleep at night. When I would spit out my mucus that ran from my nose to throat, I saw it frequently looked like a mixture of pus, blood, and like grainy peanut butter clumps. I had a pain in my forehead that was increasing steadily. I could never sleep well due to inability to breathe, headaches, stomachaches, and severe pain throughout my body. I was unsure what my problem was besides allergies and nasal polyps, but I felt like I would feel some better if I were to have nasal polyp surgery. However I had never worked a job in my life having always felt unwell since thirteen years old. I was too old to be on my parents’ insurance. So I had no health insurance. And besides, my pre-existing condition, nasal polyps made it near impossible to get health insurance. My parents were not wealthy. So I kept delaying seeking help because of financial reasons. I was increasingly depressed and anxious, and somehow I believed the anxiety and depression were linked to the inability to breathe and the ever-growing tremendous pressure in my forehead. Constantly, I told my family that I felt my bones in my head were breaking. I felt there was tremendous pressure on my brain. I could not understand if that was caused by nasal polyps or allergies. In 2024 I decided I was desperate and got a ct scan to see what the price of removing my nasal polyps would be. The price I was told astonished me and deterred me from seeking further help for a little while. I began to contemplate having surgery in another country where it could potentially be cheaper, but I did not know where to turn to. In late 2024 I casually asked a lady who happened to be visiting our church if her husband (who was a neurosurgeon in Mexico) knew of a otolaryngologist who could remove my nasal polyps. She said that her husband was friends with a ENT, and all I needed to do was send her my ct scan to send to her husband. And she said that he, in turn, could send it on to his friend to take a look at it. That sounded unconventional and unique to me, but I did send the neurosurgeon’s wife some pictures of my ct scan. After maybe a month the neurosurgeon from Mexico visited my church. He talked to my father and persuaded him I needed surgery as soon as possible because the neurosurgeon and the ENT who had seen my CT scan believed I had more than just obstructive nasal polyps. He said that he did not really know for sure what it was that I had, but he believed it was either cancer or a flesh-eating fungus. And he strongly suspected fungus. I went to Mexico in early January 2025. I got more CT scans there. The CT scans there were much clearer and showed a distinct mass besides my nasal polyps. The mass was located between my optic nerves of my eyes and right up close to my brain. It was said to be 1/2 millimeter from my brain, and 1/2 centimeter or less from my optic nerves. My dura mater of my brain was beginning to swell. My doctors said that without surgery I had less than a month to live. Just a few days after I got to Mexico I had surgery because my neurosurgeon was afraid the fungus would enter my brain at any minute. The fungus had already destroyed and “eaten” a small portion of bone near my brain. When I had surgery the biopsy was proved to be Aspergillus fumigatus with necrosis. I took two or 3 months of itraconazole. I felt hugely better. My apparent food sensitivities all disappeared overnight, my rosacea (or whatever made my face formerly burn red and hot all the time) disappeared, my environmental allergies tremendously improved. My pain, electric shock-like horrible random pain, disappeared completely. My fevers disappeared. It seems my problems really were all in my head— in the form of Aspergillus fumigatus! My fatigue improved significantly, but I was still tired. My stomach issues did not improve. But in general, I felt alive again. In May 2025 when I got my blood tested in Mexico again, my Aspergillus fumigatus levels were still kind of high, but not as high as at my surgery. Then in September 2025 I began feeling worse: terrible headaches, depression, severe fatigue, I had grainy stuff coming out of my nose with my snot, and my stomach problems began getting worse. I felt certain I had the same problem reoccurring. I called the neurosurgeon in Mexico, and he advised me to take a certain antibiotic he had previously given me to self-medicate myself with if I were to get a bacterial infection. I took the antibiotic, but felt no better. I communicated with my Mexican doctor again, and he advised me to take the itraconazole (he had also given me that in case I needed it.) After the 1 month of itraconazole I felt some better, but then I began to get worse. In January 2026 I visited Mexico to have a health check-up. Strangely, I had a bacterial infection despite just recently having taken the full dose of antibiotics, very high igg, igm, ige of Aspergillus fumigatus, and my nasal polyps were said to be growing back quickly. I was treated for bacterial infection and given various treatments for nasal polyps. Then I was put on 3 months of itraconazole. I felt improvement at first, but after I stopped taking the itraconazole, I felt unwell again. Besides feeling unwell, I noticed grainy stuff and blood mingled with the mucus from my nose. I thought I could be mistaken as to what exactly it was. One day when my polyps were shrunk a bit, a large ball of about the size of a marble came out of my nose. It was coated with mucus, but underneath about the size of a large pea was a grainy ball. Off and on since then I have been having grainy stuff coming out of my nose. This has been going on for months. I have been trying to to see a ENT in the US. First, I applied for financial assistance at a hospital. Then I found out to see a ENT I have to be referred. But is not easy to get a referral to see a ENT. I tried to get referred 4 times. For some reason, the walk-in clinic doctor could not figure out how to refer me! I got tired of playing that game. I went to an infectious disease specialist. After paying a very high price, again the referral did not work. That time it was clear the problem was the ENT’s fax number was not working. Now after making many phone calls, I hope I am now referred. And once I get officially referred, the visit is to be scheduled very far out I am told. Doctors do not seem to understand the need to address my health problems quickly, or they are unable to do so because of too many patients. I am still in the hunt to get the Aspergillus completely out of my body and to feel well again. By the way, I have no diagnosed autoimmune condition, no HIV/AIDS, no hepatitis, no diabetes, no cancer, never had chemotherapy. But I do presently live in a house with visible mold.
From Gloria Maxson
