I have posted this before but am including it in my “Catch Up Mondays” because it is important for those just learning about fungal infections and/or bone infections. This was first posted in May 2012.
Shortly after my third sinus surgery on August 1, 2000 I received news that the culture from the surgery revealed Aspergillus Flavus. I was placed on an antifungal. There was still a possibility that I would have to start IV antibiotics for osteomyelitis (bone infection) in my sinuses again. I had just had the PICC line for the last IV removed only six weeks before. Everyone kept asking if I knew of anyone else like me and I didn’t. After I started searching on the internet I found a group online through yahoo groups. Not only did I find the site and a wonderful woman to communicate with who had the same fungal sinus condition, I found a great support system made up of wonderful and caring people who were suffering like I was. To visit the aspergillus support group or the fungal infection trust: www.aspergillus.org.uk/newpatients www.fungalinfectiontrust.org
In my book I write:
The more I read, the more terrified I became. Aspergillus is not something that just goes away on its own. It is extremely difficult to get rid of. There was more than one form of Aspergillosis. ABPA (acute bronco pulmonary Aspergillosis) affects the lung. There was also the Allergic Fungal Aspergillosis (allergy to Aspergillus) as well as a colonizing form of Aspergillosis (Aspergillus spores colonize in a particular area of the body). The worst form was invasive Aspergillosis (In this form, the Aspergillus spores get into the blood stream). The invasive form usually results in death. Those were not words I needed to read especially in the depressed state I was in.
Every time I saw my ENT I asked, “Are you sure it isn’t invasive?” Each time he reassured me that he did not think so. I am on antifungals pretty much all the time because if I stop, a flare up results and the fungus takes off again in my sinuses making me very sick. While I do have to deal with this, I thank God every day that it wasn’t the invasive form.
Posted in Allergic to Life: My Battle for Survival, Courage and Hope, Antifungal Treatment, Chronic Illness and Treatment, Depression, Environmental Illness, Excerpts From Book, Mold, Mold Exposure, Sick Buildings
Tagged allergic to life excerpt, aspergillus, aspergillus support group, bone infection, chronic illness, fungal infection trust, IV antibiotics, osteomyelitis, PICC line, types of aspergillosis
I have had osteomyelitis in the sinus on more than one occasion The pain was so intense and the typical antibiotics were not making me well. My ENT consulted a colleague who suggested that I have a Gallium Scan. The colleague thought that I might have osteomyelitis (an infection in the bone). This was my ENT’s first encounter with someone who possibly could have osteomyelitis. I was directed to the x-ray department of our local hospital to have the test done.
A Gallium Scan is a test using radioactive material called gallium to look for swelling, infection or cancer in the body. The scan is a type of nuclear medical exam.
I arrived at the lab and was injected with radioactive gallium into a vein in my arm. I was told that the gallium would travel through my blood stream and if I had a bone infection it would collect in the bone. I was instructed to go home and come back a few hours later to allow the gallium time to travel through the blood stream. When I returned to the lab I was placed on a table and was instructed to lie still while a special camera able to detect gallium would see whether it had gathered in my sinuses. The test took me about thirty minutes. The result was that I did, indeed, have a bone infection in my sinuses. The treatment was six weeks of IV antibiotics.
After six weeks of IV therapy I was once again sent to the lab. The best way to determine if the infection was gone was to have a White Blood Cell Scan. Again, radioactive material was used. My blood was drawn and the white blood cells were isolated and tagged radioactively and re-injected into my arm. A scan was done a day later to see if the radioactively tagged white blood cells settled in the sinuses. While the test showed I was over the infection, I was uncertain because I still did not feel great and that little voice in my head said the battle wasn’t over. I was so right!
The question of how you know if a sinus infection is osteomyelitis was a search question. I think the Gallium Scan is probably the most definitive test from what I have read and is the test my doctor used. CT Scans and MRI’s can be ordered but may not show the entire picture. I would love to show you a picture of a Gallium Scan but don’t want to risk copyright infringement. Just imagine a typical x-ray with a bright yellow glow. The bright yellow glow is the radioactive gallium that pooled in my sinuses.
This is my experience with detecting whether or not my sinus infection was a typical infection or osteomyelitis of the sinus. Only a medical practioner can make the determination of whether or not someone has osteomyelitis based on symptoms and tests that he or she chooses to prescribe.
I had my first sinus surgery in November 1999 shortly after the attempt at aspirating my sinuses failed. By January I was still sick and and getting black mucous from my sinuses that my doctor suspected could be fungus. A second surgery was performed in March 2000 to try and alleviate all the pain I was having. I continued to be sick and in pain. By April things had gotten horribly bad. From my book:
…I received a devastating phone call from Dr. Spitzer. The news was not good. He had received the results of the bone scan. The scan showed I had osteomyelitis (an infection of the sinus bone) and I would have to take antibiotics intravenously for six weeks. He had scheduled for a home health nurse to come to my home that night and start and IV…..After several attempts by the home nurse to place a line in my hand, she gave up…the nurse phoned my doctor and I was told to come in at 7:45 a.m. and he would place the IV line and I could take my first dose there…
The schedule for taking this antibiotic (Primaxin) was exceedingly difficult on me. Taking Primaxin is like taking a chemo drug. The IV schedule was three times a day for six weeks. I lost sleep because of having to get up early just to get the medicine out of the refrigerator so I could take it an hour later and going to bed late because of my night time treatment. I lost my appetite and began losing weight. Depression came on me like a big black cloud. Eventually I had to cut my work schedule to half days because I was too tired and depressed to work a full day. Here I had only been working less than a year and had taken time off work for two sinus surgeries and shortened my work days. The guilt I had for leaving my co-workers in such a mess just deepened my depression. Even then I was confident that I was going to get well and had no idea the ride I was in for.
Posted in Allergic to Life: My Battle for Survival, Courage and Hope, Antifungal Treatment, Depression, Environmental Illness, Excerpts From Book, Mold, Mold Exposure
Tagged antibiotics, bone infection, bone scan, chemo drugs, fungus, mold book, osteomyelitis, sinus aspiration, sinus infections, sleeplessness