First, let me say that, after growing up in a house built in the 1500s (yes, you read right) I was used to mold. Mold was rarely seen in the actual apartment, but the building was full of it, and whenever there was a small leak or the landlord forgot to repaint, mold would pop up. And it wasn’t just that one building. Mold was part of the ecosystem. I imagine it was nothing like modern mold, which is laced with toxic chemicals. All the materials were very natural (again 16th century), the whole town was like that and no one seemed particularly affected by it. In fact, the average life expectancy was (and still is) well over 80.
Because of this, I was used to think of mold as “charming” and “bohemian”. I didn’t mind living in dirty attics in Paris and even dirtier sublets in old Berlin. I got a large part of my clothes from flea markets and thrift stores. I rescued (beautiful) furniture from the trash. Mold was minor annoyance. Not a terrifying threat to my actual survival.
Heck, I even managed to recover from ME/CFS (which in fact was Lyme and reactivated EBV) in an house made of rocks in Tuscany, where half of my bedroom was covered with black mold. In retrospect, I shiver. I was there only for one year. But in spite of everything, my remission began in that moldy room. I suppose there is mold and mold.
The mold that broke me was on the other hand invisible.
The second I stepped into that house, a well-maintained building barely 80 years old,, the smell of stale curry cooking was overwhelming and sickening. I politely inquired with the neighbours if the previous residents had been very fond of curry. They looked at me as if I was crazy. It turned out, I was the only one who could sense that weird smell.
At first I stayed in the house only for two months, while there were works at my place. When I went back to my apartment, I had developed for the first time in my life some severe allergies. To dust mites, to grass, to some random foods. My days were miserable. I will never know if it all started with that house, but it could have.
After two years, I decided to leave the Netherlands and I relocated to the curry house, permanently.
I assumed that all that sneezing and watery eyes and chest congestion were caused by dust. We spent months cleaning, wiping, covering the old wooden floors, all useless.
Another thing that should have tipped me off (but didn’t) was that drinking tap water from the house gave me terrible stomach cramps, and each time i took a shower I had terrible pains all over and had to stay in bed for hours before I could move again.
I thought it was because the water pressure was poor and the water came constantly hot and cold – I changed the shower head, nothing. I changed the whole shower tower, nothing, every shower was torture.
At the same time I began experiencing very odd, intense electric shock pains in my arms and legs, which got infinitely worse once summer arrived.
The heat made it apparent that my body had stopped sweating altogether, and some pretty average summer temperatures sent me twice to the hospital with acute heat stroke. I had to move to the mountains for two weeks to recover.
I returned, in spite of what I thought was “just” allergies, because I had business to attend to, and with each passing day I became more and more incapacitated. Three months and two top neurologists later, I was diagnosed with peripheral neuropathy of unknown causes (“idiopathic”).
An electromiography gone wrong left me completely paralysed in agony for more than 4 months, and the neurologist’s reaction was first: “it’s not possible” and then :”ok, whatever, take these boxes of Gapapentin” (one of the strongest painkillers around). The Gabapentin reduced the pain for exactly 3 hours and made me feel like I was going to die, so I threw it away. This is the point at which finally panic kicked in: no one was going to help me.
Peripheral neuropathy is incurable, so they said. Again, how can they claim it’s incurable if they don’t know what caused it? They simply don’t KNOW how to treat it.
So, once again, I turned to alternative / functional medicine in search of answers.
Things were not going well on all fronts, so I moved town again, and that probably saved my life. I was still extremely ill and could barely move, but in a couple of months my sweating was almost back to normal, and the respiratory allergies were gone. After the electromyography accident, the pain was insane. I gave myself one year of time, promising myself that if in one year the pain did not improve in that time, I would kill myself (yes, the pain was that bad).
Among the various tests I did to understand the cause of this sudden Peripheral Neuropathy were the Elispot tests at Arminlabs in Germany, which confirmed that I had Lyme and raging reactivated Epstein Barr Virus. In the same period I recovered some test results from 2005, showing that already back then I resulted positive for Epstein Barr. I had not had the chance to see that piece of paper in ten years, and back then I didn’t know its importance (but that’s another story).
Anyway, after the tests results I had something to work with. I was seeing a functional doctor, who was also struggling with the complexity of my situation (a conventional doctor would have never been able to make head or tail of it).
All I knew is that the “catch all” treatments LINK that helped me out of severe ME/CFS were not enough.
So, in April 2016, I made a plan and began addressing one issue at a time :
1) Reduce the insane peripheral neuropathy symptoms – the pain was lessened to reasonable levels by a wonderful protocol I discovered in a facebook group. The protocol consisted in of antioxidants and nutritional supplements to nourish the nerves . I immediately bought them on Amazon. Within two months I could move my hands and feet again, although to this day I never recovered full function after that electromyography test.
Later another discovery: a simple test, discredited by conventional medicine, called Mauve factor measured kryptopirroluria, a condition that among other things can indicate a severe lack of B6 (confirmed by another test), which could explain the infernal pain, and zinc. Sure enough, after a few months of treatment, peripheral neuropathy was almost a memory.
I looked for diets to heal damaged nerves, and I came across Terry Wahls’ TED talk Minding your Mitochondria. The Wahls protocol has been conceived to reduce symptoms in multiple sclerosis, which is not exactly the same as peripheral neuropathy, but it also involves demyelination of the nerves.
2) Treat Lyme – I started the Cowden protocol for Lyme (read about the Cowden protocol here LINK) – I hardly experienced anything that felt like die-off, but my gallbladder kept bothering me, after a few days of herbs imy digestion would just stop working. I experienced several episodes of jaundice and liver pains. Little did I know there was a very specific reason for that, but more on that later.
3) Heal the gut – After learning that the immune system begins in the gut, I decided to begin properly nourishing my gut bacteria, so I went to a shop that sold fermented foods and stocked up on kombucha, water kefir, and fermented vegetables.
I had become allergic to all of the staple foods of my previous healthy diet, so I decided to investigate grain-free diets. (I learned only years later that (brown rice, the foundation of the macrobiotic diet, is typically high in mycotoxins, and miso is made from a mold distantly related to the Aspergillus species and that was the reason why they made me violently ill),
And at that point I had a really big surprise.
My belly had never before known fermented food, except for miso, and all the good bacteria I was ingesting triggered some serious change. So serious that soon a bunch of parasites that had been living in my intestines undisturbed for God knows how long started getting evicted. I write all the gory details of that shocking discovery and painful journey here LINK
Suffice to say that parasites were the cause of my gallbladder not working properly while on the Cowden protocol (perhaps the herbs disturbed the parasites?). And I learned that parasites also could create the zinc and B6 deficiency that had ruined my peripheral nerves. Everything made sense.
So by the end of 2016, I THOUGHT my problems were: Lyme disease (which I was treating), reactivated Epstein Barr Virus, parasites (which I was treating, in a hellish, excruciating journey), and nutritional deficiencies caused by all of the above. Talk about complex illness! and yet I was missing the most important piece of the puzzle.
Nothing was further away from my mind that the stale curry house. That is, until March 20 2017.
On that fateful day, I received a large number of boxes containing all of my books and clothes and basically everything I had ever owned, all of which had been stored in the weird smelling house for more than a year.
The second I opened the boxes, it was like breathing in ground chilly peppers -within one minute, I was sneezing uncontrollably, tears streaming down my cheeks, my chest full of phlegm made it hard to breathe, just like it had been in the old house. ALL of these symptoms had been absent for the previous year.
I ran out of the room, shut the door, and waited two days. The respiratory symptoms improved, so I ventured again into the room with the boxes, and again the same reaction.The familiar smell had filled the room. That was the first time that the thought of mold occurred to me. In that old house there was zero visible mold, just the weird curry smell.
Internet and Facebook groups immediately provided some answers. I rushed to the nearest pharmacy to buy some mold tests. After a week, the answer: three species of mold, Aspergillus Niger, Aspergillus Fumigatus and another one that right now I can’t recall were living in those boxes. That explained a LOT.
Unfortunately I knew nothing about cross-contamination, so we spent more than a month attempting to save my belongings. We cleaned 5000+ books with baking soda, UV lights, we tried heating them in a hot oven and freezing them . We washed clothes with vinegar, borax, EM3, baking soda, ammonia, special anti-mold products, salt and i forgot what else. After all the washing, the clothes didn’t look like they were worth keeping anyway. Nothing worked, but on the other hand the whole apartment was now contaminated.
After one month of work I gave up on my possessions, put everything back into the boxes and carried the boxes downstairs to the cellar, but it was too late. The whole apartment now was making me sick. We washed the walls with borax, then essential oils, then Em3, but the symptoms stayed.
Then another twist of fate occurred. One of the several alternative practitioners I was seeing erroneously thought that my problems were caused by candida, and she prescribed Nystatin, a common over the counter candida medication.
****Warning! gross details ahead ***
I took it, and I didn’t expel any candida (a little bit, later on).
What I saw in the toilet instead were some horrifying pieces of a grey spongy matter, very similar to the inside of a mushroom, almost as thick as my little finger. It was shocking to see them, but after passing them I felt ridiculously better.
Then I went back to look at the pharmacological specifications of Nystatin, and apparently, in addition to candida, it also killed some Aspergillus species on contact. Mmmm. Aspergillus. Where had I heard that before? I remembered that only one herb from the Cowden protocol, had given me intense, albeit temporary, relief. The herb was called Cumanda. I went to check, and, sure enough, among its antimicrobial activities there it was, Aspergillus. Aspergillus. In my frigging intestines. Could that be? I went back to the lab where I had done the Lyme tests, and I asked for some tests to detect Aspergillus. Both IgG and IgE levels came extremely high.
Conventional medicine said that I couldn’t possibly have mold growing in my bowels, unless I had AIDS or something. But the monstrous pieces of alien matter kept coming, every few days, for weeks.
Clearly there was something really wrong in my intestines. What came first? Did the parasites prepare my gut to be colonised by mold, or vice versa? (I probably got the tapeworm in 2013 after a bad food poisoning from sushi) Lyme and Epstein Barr I had probably since 2004, did that damage weaken my immune system so much that this happened? I will never know.
So I had to add to my list
4) Treat Aspergillus – thankfully, due to its location in the digestive tract, Nystatin seemed to be enough, it took two rounds of several months within a year to be reasonably safe that there was nothing left.
After two years of treatments I was halfway functional , but far from healed.
I followed a strict diet, first the Wahls protocol, then I moved to theAuto Immune Protocol (AIP) which removed even more potentially anti inflammatory foods.
I was taking binders, according to the Shoemaker protocol for CIRS (Chronic Inflammatory Reaction Syndrome), and I was detoxing like a fiend. I spent my days doing Epsom salt baths, dry brushing, steam inhalations with essential oils to treat bronchitis, yoga in front of the UVB lamp to raise my vitamin D, it was a lot of work.
Then one day, for the first time in 3 years, I decided to take a little holiday.
I got a last minute plane ticket and I went to Spain for four days to visit a friend. And since the first night away from home, I felt AMAZING.
Then I went back. Five minutes after I had entered the apartment, I felt like I had been run over by a car, immediatet bronchitis.
That was interesting. So I decided to make another experiment. I booked another flight, and I went to Portugal for a week. I felt incomparably better, almost like nothing had ever happened. Then I went back, and again, instant reaction.
See, I had just learned first hand about mold avoidance.
I remembered all the people in facebook groups begging me to throw away all my things, I thought they were just exaggerating, but they were right.
I had tasted how it felt to be healthy and active and without any pain, I wanted more.
In the months that followed, I gave away most of my things, sold my guitar, I had to throw away a year’s worth of new clothes because I had kept some infected items that contaminated the whole closet.
I bought a new suitcase, a small ukulele, some new clothes, and I left, to practice mold avoidance. (Read about mold avoidance here LINK)
And that’s the end of my mold toxicity story.
Unfortunately, after just 6 months of well-being, I had another completely different encounter with mold, but that’s another story. LINK
Thank you for reading!
