This story is the most painful to write, because there is no conclusion to it, the fight is still going on and I don’t know how it will end. I want to write it nevertheless: what literally saved my life was knowing about Aspergillosis beforehand, so I could know what was going on and take quick action instead of waiting the usual 3 to 5 YEARS people with fungal infections have to wait before getting a diagnosis, not to mention treatment. I hope my story can help someone.
I was recovering quite nicely from my previous close encounter with mold LINK.. I had moved to Portugal, I was feeling OK in my mold-free room even if exposures set me back but symptoms lasted only a few hours. I was strong, peripheral neuropathy was basically gone, and I was starting to rebuild my life.
What I didn’t know was that a casual accident happened 13 months prior was going to set my life off track once again, with the help of some mold.
One fateful afternoon, back when I was still living in mold, I was going somewhere in a hurry and as I had skipped lunch I was munching on some almonds on the way. I was near the bus stop when I saw my bus drive by some minutes earlier. Instinctively I made a run for it, but that was a bad idea, because by doing so a piece of almond went the wrong way.
Had I taken a couple of bites less, I might have died then and there in that secondary street with no one in sight. As it were, just a little bit of almond, maybe 1/6th, got stuck in my right bronchial tube.
The ER and the pulmonologist I saw afterwards refused to take it out, saying it will dissolve by itself (that was not true by the way). I had to deal for 4 months with looming aspiration pneumonia and bronchitis, which i treated well enough with essential oils and herbal antibiotics.
After that critical period, I lived with my piece of almond, I was a bit out of breath on stairs etc and I had this constant feeling of a finger pressing into my chest, but aside from that everything was more or less normal.
Fast forward 13 months, I had joined a choir as I always do in new cities, and we went to have a Christmas concert on the street, which happened to be right in front of a very moldy wall. Singing makes you breathe really deeply so the mold spores went effectively into my airways. I switched places with another choir member but I felt strange and started coughing. Thinking it was my mold reactivity, I didn’t think too much of it.
But one week passed, and I never stopped coughing. Two weeks. Coughing day and night. After 2 weeks the cough was so intense that I coughed out the piece of almond (still there after 13 months! Although covered by some weird almond-coloured perfectly round balls of whatever my body was producing in reaction to the foreign body). Together with the coughing, other weird symptoms appeared: an extreme itching in my airways, and burning like breathing in pepper, and this ridiculously intense feeling of dryness inside. And the sweating: for days I would sweat so much that I had to change my pyjamas every few hours. I spent several days passed out, unable to get up or even eat. At that point I started to suspect this was NOT a CIRS reaction.
The coughing got worse. At week 7 I was coughing 24/7 and with a strongest cough fit one of my ribs snapped and broke. Both the ER and the two doctors I visited said it was “sudden adult asthma onset” and they refused to consider that everything started with inhaling a mold. I remembered coming across the Aspergillosis Trust website and community during my first mold experience two years prior, but at the time I hadn’t considered it because the symptoms were not respiratory. This time they definitely were.
Around week 8 one morning I coughed a speck of black dust the size of a coin. Then some days later another black speck. And I couldn’t walk stairs anymore, and I had asthma attacks and the itching sensation was insane, I wanted to rip my airways out to scratch them. At that point I was pretty sure of what the problem was, and it was NOT adult asthma onset.
I found the only Aspergillosis specialist in the area, and the only available appointment was three months later. I booked the appointment, but I could see clearly that I was on my own.
At week 8 I took action. Actually I took action before when I thought it was some kind of flu or other infection, but it wasn’t targeted. I created a different post to list all the by now hundreds of remedies I tried, with variable success, you can read it here LINK.
By the time the specialist’s appointment arrived, I was in a temporary remission after my first ozone therapy treatment LINK. He dismissed my symptoms and got angry because of all the herbs I had taken, but my blood tests came back positive for Aspergillus (which I knew was from the infection from the intestines two years prior and NOT from the respiratory infection, because all the remedies that worked successfully against Aspergillus did NOT work against this new issue).
He looked at the series of pictures I had taken of my black cough and between that and blood tests he confirmed that I had a fungal infection in my bronchia, and he said to go and come back after I had organ damage visible with a CT scan (apparently the broken rib and being bed bound and in constant agony didn’t count as enough damage). In addition, he didn’t care that as a semi-professional singer ruining my lungs was a literal tragedy.
I knew from the Aspergillus groups that I was not going to get any help from the medical community until I was literally half dead, but still that visit came as a rude awakening.
I was not unfamiliar with that situation of having to treat myself – during the ME/CFS years the only thing I got from conventional doctors was referrals to a psychiatrist and i had to actively avoid going to the hospital even when I needed it, in order to avoid abuse and forced psychiatric hospitalisation, only because I was not able to walk.
This time though it felt different: first of all because this, unlike ME/CFS, chronic Lyme and mold illness, was a recognised illness, it was in the medical books, I was supposed to get a better treatment. And actual treatment. And this time it was potentially life threatening. I felt desperate. But I need to act in order to save my lungs, BEFORE organ damage.
I read hundreds of academic papers and all the available medical books about antifungals and antifungal herbs and how the fungi behaved in the body. The main problem was that I was pretty sure that my guest was not Aspergillus, but there was no way of knowing what it was exactly, as no lab wanted to make cultures beyond one week’s time and the Aspergillossis Center was adamant that a culture should take three weeks or more, so I had to keep guessing.
I managed to do the Great Plains mycotoxins test, which indicated the presence of toxins related to Penicillium species. A new Aspergillus IgG and IgE came almost negative.
I was getting better thanks to various remedies and almost daily infrared sauna, and for the second time I screwed up my health again because I plunged with all my energy into looking for an apartment. My CIRS symptoms were still through the roof so finding something suitable was basically impossible, and I spent another 3 months of life searching for housing full time, instead of working on my recovery. I imagine that the stress and little sleep and physical effort didn’t help at all. Then Covid arrived.
As I am always on top of trends (insert bitter joke here), I caught Covid only a week after the official beginning of the pandemic, January 26 2020. It lasted around 3 months, and during that time and for some months afterwards the fungus was pretty silent, but in November 2020 it seemed to have moved into my sphenoid sinus (badly affected during my Covid infection). The black stuff was back, not only from the bronchia but also from the nose, together with major symptoms of local inflammation.
Getting a diagnosis of the sinus infection proved even more difficult than the bronchial infection. I literally contacted more than 30 ENTs, and maybe two out of 30 stated that they had any experience with fungal infections, and honestly they both didn’t seem to know anything about treatments. One candidly admitted that he had seen only one case in his whole career.
Finally I got a written diagnosis, and another specialist also refused to treat me.
I am here with both of my lungs intact because one kind GP decided to help me and prescribed me Itraconazole. Now, my diagnosis was of an Aspergillus infection but I knew that was wrong, again because all the remedies that worked so well against Aspergillus Niger in my intestines two years prior made the lung infection much worse, and also because the mycotoxins test indicated a completely different species other than Aspergillus.
Itraconazole was great for Aspergillus, but was it going to work on my mystery fungus? Or was I going to make the fungus resistant and seal my demise with my own hands?
it took me months to feel desperate enough to try it. It was a mistake because not even a couple of days after taking it I felt like a new person. Brain fog gone, scary coated tongue gone, muscle pains and aches gone, I felt much more energy and wellbeing.
Sadly my previously safe lodging got contaminated, I couldn’t find another place for months and I believe the violent CIRS symptoms made me lose much of whatever progress I had made.
I moved to Canary Islands, literally 60 meters from the ocean, and I learned to sleep with the window open in the hope that breathing the sea air would help the healing. In a way it worked, and lung symptoms almost disappeared, but I was plagued by constant infections of other kinds, so in the end I moved back to mainland Europe.
After one such infection the fungus raised its head again, and I discovered that actual fasting or semi-fasting, with zero sugar, even fruit, zero carbs and low fat was keeping the symptoms down.
This is where the story meets the present moment – I am going to try with more focused ozone therapy ( as I explained here LINK ozone is great but it gave me terrible side effects, otherwise I feel I would have been healed already) and keep fighting to disprove the notion that Aspergillosis is untreatable.
I firmly believe that it is untreatable ONLY because conventional doctors will not treat it or even diagnose is until it becomes untreatable. And sadly in Europe most alternative doctors have never heard of the condition.
Please find here LINK the ridiculously long list of all the remedies, herbs, supplements and medications that I have tried for my mystery fungal infection, hopefully one of them may work for you.
I sincerely wish for anyone who suspects having a fungal infection in their airways or wherever to NOT wait for some doctor’s diagnosis and start researching and taking actions as soon as possible. A diagnosis is nice, but keeping your organs functioning is even better. You will NOT get help before you are very very ill. If you are already very very ill when reading this, then I am not sure that herbal remedies can help you (they didn’t heal me, just slowed down the progression, and I caught it really early), but it still beats feeding the fungus with steroids instead of getting appropriate treatment.
I do believe that ozone therapy is incredibly effective against fungal infections, and most people do not experience the strong adverse effects that I experienced, ozone therapy would be my first recommendation.
Please also check out my list about treatments for fungal infection in the sinuses LINK,
Dr Denning’s work gives me hope that fungal colonisation in the lungs doesn’t have to be a life sentence MORE – LINK.
