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.
Hi, I’m blown away reading your blog. I too have mould problems (as well as other chemicals). I’ve lived with this for nine years now, and did get better for a while–better in that I did not have to wear a mask all the time, and did not have pain while breathing through my nose–but I moved back to the city (after living near the ocean) and into a house that developed a mould problem of damp concrete, and my health went down again. Sometimes I can’t believe how bad it is, and when Ive had mould exposure (especially if I eat fruit or veggies that have any on them–and tomatoes sometimes too) my nose and sinus throbs for days, and all breathing and inhalation of smells hurts. Is that what happens to you by any chance?
My mold exposure and my chemical exposures share some symptoms but are very distinct from each other. With chemicals my lungs become affected, I get brain fog, my asthma gets so bad that I cough until I sometimes have to vomit from the coughing and gagging reflex. I also get headaches and my sinuses become congested and fill with mucous.
With mold exposures the first that happens is that again my chest feels tight but then my brain gets really bad. I can listen to someone talk to me and in my mind can formulate and answer but cannot communicate that answer. That part of the process is gone. I get chest pains, cough, and get tremors in the right side of my body. Depending on maybe what mold it was or how much I have even become catatonic. The fungal infections and bacterial affections have caused me to have trigeminal neuralgia. The pain radiates from my left eye (like someone is stabbing me with an icepick) and then radiates down my cheek to my ear and jaw.
How awful for you. I’m wondering if one exposure makes the other worse? I hope you have your accommodation sorted so you can a least have some respite. Australian author Colleen McCullough has TN and underwent surgery for it. (Not that I’m suggesting that, it’s just she’s one of my favourite (of the hundreds) authors.) I have the fog thing with spray deodorants; it’s like I am very far away from my own thoughts, so far I cannot understand them, but this does not happen much because I’m careful to avoid the triggers. The fungal infections sounds awful too. I’m sorry you’ve had to go through that…
Oh, yes! Here is a link to a poem that I wrote about moulds. (In Australia we spell moulds with a ‘u’, just incase you think I’m a moronic speller 🙂 ) http://thelabyrinthofthechemicallysensitive.wordpress.com/2012/04/20/moulds/
Miche – I like your poem. I have written some as well and will be posting them with excerpts from my upcoming book.
I look forward to that. I’ve just finished workshopping mine in a poetry class I go to–students go fragrance free there–and I now have to make it so that the average person can understand it. I can’t wait to read yours… it’s great to create something good out of something crappy 😉
Reblogged this on allergictolifemybattle and commented:
I recently learned that the Aspergillus Fungal Trust has been renamed the Aspergillus Infection Trust. I have updated the information in this post to reflect this new information.