mold

(continue from part 3)

Hindsight seems to be my main road to healing. Sadly, the enlightenment arrives always after years of struggling. Better than never, of course.

This part wants to tell the story of my first close encounter with systemic mold (Aspergillosis) and the almost as devastating CIRS, Chronic Inflammatory Reaction Syndrome, that that encounter triggered. For once, food was not enough to fight this monster, but it definitely played a part.

In 2015 I moved to a house with a peculiar smell, like decades old curry. Everyone told me I was imagining it. For me the smell was overwhelming and sickening. The moment I set foot in that house, I started having intense allergy-like reactions, sneezing, swollen nose, bronchitis.

Drinking the water made me sick. I bought bottled water. Showering gave me intense pains in arms and legs, and left me shaking and unable to move for hours on end. I thought it was a problem with the water coming alternately hot and cold.

Why did I not leave? I had to study for some exams and I really wanted to pass them. I felt I had no other place to go. I was quite depressed for other reasons and I wanted to be with someone who cared for me. All this made me ignore my health and force myself to keep going. After all, it was just an allergy, probably to dust (I had been diagnosed one year earlier). Allergies will make you feel awful, but they won’t kill you, do they? So I thought.

I suffered more than expected for 6, 7, 8 months. In the meanwhile, new strange, terrifying symptoms popped up: the usual discomfort and insensitivity in arms and legs that I had for many years (I discovered later, a symptom of untreated Epstein Barr Virus) became full blown neuropathic pain. VERY intense.

A heatwave made me realise that my body had stopped sweating, like, completely.

Two almost fatal heatstrokes, followed by hospitalisation and weeks of recovery on a mountain, suggested this new development was a problem.

I did relate this situation with what I thought was “just” an allergic reaction, but I had no idea about how one could cause the other. After 8 months I passed all my exams and, as I was suffering too much, I moved back to my old city.

After some weeks my body started sweating again, and in two months time I started feeling better.

The peripheral neuropathy was still there, but in lesser measure.

One neurologist thought i had peripheral neuropathy for “idiopathic causes”, and said he would write me a diagnosis after I got an electromyography to test the peripheral nerves

.

Either the technician messed up badly, either there was something really wrong in my nerves (mold?) but the Electromygraphy, aside from being Guantanamo Bay torture levels of excruciating, left me in horrifying pain 24/7 and completely paralysed me for 3 good months.

My mother had to move in with me because I couldn’t hold a cup or move my feet.

I was given Gabapentin which barely touched the pain. I promised myself that I wouldn't kill myself for one year, but in case one year passed and I was still like that, I would have leave to go. I was in THAT much pain.

Again, I looked for natural remedies. With crippled hands, I typed for hours each day and night (it’s not like I could sleep) searching for solutions. Google scholar came up with some surprising suggestions.

Research showed that sour cherries juice showed around 70% of the effectiveness of Gabapentin. After 3 articles about that, I sent my mother to look for sour cherries. The juice was not available but frozen sour cherries were very popular. I ate one pound of frozen sour cherries. Weird, weird. Placebo effect? Who knows? Who cares?! the pain was cut in half. Although one pound of sour cherries per day was giving me a bellyache.

I was not in agony anymore but still suffering. More searching. The essential oils of Frankincense and Elychrisum can help with peripheral neuropathy. Frankincense didn’t do much, but the ridiculously expensive Elychrysum worked! if only for some hours, enough to get some sleep.

The anguish was lessening, I was finding solutions.

I read that fermented foods were useful in reducing

toxicity and reducing toxicity will help peripheral neuropathy.

I called a taxi and went to a specialised shop to buy bottles of kombucha and water kefir and fermented vegetables.

That didn’t help with the PN, but it made me discover that I was hosting a whole collection of parasites. So, win.

Finally I managed to find a simple protocol by a Bob Diamond who researched nutrients to heal peripheral nerves and who combined a really good list of supplements and foods.

That helped immensely, and between that and getting rid of some parasites in six more months I had recovered most functionality (although I will never play guitar properly again, thank you Electromyography technician).

I found a nice apartment to rent, moved in, and after two months I discovered the true source of all my troubles. Remember the house with the strange curry smell? All my stuff, 6k + books, two closets of clothes (my weaknesses) had been stored in that house while I was searching for a permanent apartment in the other city.

I was feeling pretty fine the day the boxes arrived, I had enjoyed some weeks of almost well being, then I opened the boxes and bam! nose swell instantly, like breathing in ground pepper, chest clenched, struck by instant bronchitis, eyes started to tear up, the pain in arms and legs was back. In two days time, again I could hardly stand. And the whole room where the boxes had been stored smelled like ancient curry. This time things were clear. 


But I was a newbie to the mold world and I didn’t know what to do. My poor mother came back again and we started washing clothes. Like 8 rounds of washing, with all sorts of natural and chemical mold killers. At the end of all the washing, the clothes didn’t look worth keeping, and they still gave me a terrible reaction upon wearing them (weak knees, pain all over, random nerve pains like in teeth and sciatica, burning on the skin and my personal toxicity knockout, occipital neuralgia).

Same with books, precious research books and rare editions, we tried to cook them in the oven, douse them in baking soda, shower them with UV light, and finally resorted to enclose each of them in a ziplock bag. By this time, half of the new apartment was giving me terrible reactions. We cleaned all the walls with essential oils, EM3 and probiotics, borax, alcohol, whatnot, to no avail. Two whole months had passed in these amenities, and now I was again bedridden in constant suffering.

Thanks to some Facebook groups I learned about toxic mold and the Shoemaker protocol. The members all said unanimously “toss everything”, but sadly I read it (or accepted their advice) too late, only after I cross contaminated the new apartment. Needless to say, I wasn’t used to losing everything I ever owned, so I plunged into a deep depression. It took me another month to bring all the boxes downstairs to the cellar and to begin accepting the new situation.

In the meanwhile, the Parasites Wars were going strong and I was winning. Or so I thought.

My hydrocolon therapy lady suggested me Nystatin for candida, and just some days after, Lo and Behold, something new. A bit of candida, clearly recognisable (because, err, really white) but aside from that various pieces of an unseen before spongy beige / grey matter, as thick as my little finger, looking a bit like the inside of a mushroom.

(continue in PART 5, with more gross horror mushroom story)

(continue from part 2)

It felt such a long way. I had traveled through the ME tunnel and I had come out on the other side. After luckily treating IBS and giving up Western medications I was semi functional and could have a semi life.

After switching to macrobiotics diet I was even closer to an actual normal health. That normal health (or a close approximation) came to be only after a bioresonance therapist informed me about mercury poisoning and amalgams. I had my 6 (7? I forgot) amalgams safely removed, and after some months I felt NORMAL, for the first time in 7 years.

I was still happily on a macrobiotic diet, with some adjustment to accommodate my constant meat cravings (macrobiotic diet is mostly vegan, but it does include some meat, even if it's on the Super Extra Yang side of the spectrum).

My strength was more or less as I remembered it before getting ill (I was never very strong because of all the tranquillisers), the bouts of weakness that were still occasionally returning after my miraculous although partial improvement in 2009 had all but disappeared, Fibro pain was back briefly only after a lot of exercise, once every couple of months. I could do almost every activity I wanted. I felt healed.

In hindsight that was quite an achievement - only in 2015 I discovered a paper from 2005 that a doctor had misrepresented, demonstrating clearly that I had reactivated Epstein Barr all along. And some months before the onset of what had been diagnosed as ME, I had an insect bite (tick?) showing the fateful bullseye rash, which at the time for lack of better judgement I ignored. All this I learned only many years later.

So I had managed to send reactivated Epstein Barr and lyme into remission with just diet.

And juicing. And $80 per week of acupuncture and bio resonance and chiropractor. And 2 years of Chinese herbs. And frigging meditation, 30 to 60 minutes per day. And yoga, And running. And healing all my relationships/ dumping all bad relationships. And changing my sleep patterns. And oil pulling and skin brushing. And 1 month of physio rehab in spa waters every year. OK, maybe it wasn't JUST the diet. Still, as I didn't even know what the real problem was, it was still pretty impressive.

What I didn't know was that destiny had more s*, pardon me, challenges in store for me. In the form of some delicious sushi. That must had been off and gave me a really bad food poisoning. I didn't think much of that, but after some months the most terrible depression started. I had various reasons to be depressed, my life wasn't going at all i as I wanted it to be, in spite of those two years of good health, but still, I had gone through so many challenges in my life and NEVER felt such bottomless despair.

July that year was a wonderful summer, and I started crying then, all day, and never stopped. I knew better than running to some psychiatrist to get poisonous medication that would have defeated all my detoxification efforts, also because an impressive number of accidents piled up in the span of few months - a scooter accident that gave me two herniated disks, my career being basically destroyed by some nasty coworkers for no reason, pneumonia, two most important relationships disappearing, I mean, I had good reasons to cry.

But still, it felt odd, nothing like my usual self. In the same period I developed some intense allergies that I never had before in my life. Allergy to dust. To grass. To some foods.

Destiny kept turning its wheel, and I moved to another country, in a house with a very weird smell. I had immediate violent reactions, which I thought were due to dust. I cleaned and cleaned, but the reactions got worse. For some strange reason taking a shower was excruciating, the exploding pain in arms and legs would require hours of rest in bed to recede. I tried my usual remedies, juicing, superfoods, strict rice diet, nothing, it only got worse and worse.

After 6 months I was diagnosed with a shiny new condition, Peripheral Neuropathy, of idiopathic nature ("idiopathic" apparently means : appearing for no reason, in my book it means "diagnosed by an idiot"). Between the pain and the respiratory allergies and the brain fog and the depression that hasn't improved in all that, I was beyond miserable. After a while I changed home again, and I had some respite.

Finally I had gotten a diagnosis of Lyme and reactivated Epstein Barr and a couple of other beasties to substitute the useless diagnosis of ME and fibromyalgia (I mean, what use is a diagnosis if the only thing they can do for you is tell you to suck it up?!) and finally I had something to work on.

I started a protocol for Lyme, and in the new city where I had moved I discovered a lovely shop selling fermented food. I never had kombucha before. Or fermented vegetables. Or water kefir. It was a fascinating universe, full of mystery and possibilities. Live bacteria everywhere. Good bacteria winning over the bad bacteria. There was justice in nature. I was excited.

(trigger warning - we are now at the disgusting part of the story)

On day 3 of eating fermented food and drinking kombucha, I passed a spoonful of small worms just like my cat used to have (pinworms. they are called). I blinked like 15 times before my brain accepted the reality of what lied at the bottom of the toilet.

On day 6, I felt something weird, and looked back in the toilet : a 25 cm (almost 10 inches) long string of something that definitely looked like a worm was staring at me (ok it had no eyes so it couldn't stare, but you catch my drift). I could swear I lost consciousness for some seconds. Upon further examination, it was easy to recognise it as a tapeworm (the typical segments and appearance).

Food had done it again: it made all these parasites come out of hiding. I kept going with food. According to some sources, papaya seeds are given to children in some African countries to get rid of parasites. I took them. I doubled down on the fermented stuff. But then the parasite gave such huge jumps that I realised the problem was much bigger (or actually,

longer) than I expected.

There was no specialist to help me. Two gastroenterologists I visited vehemently refused to look a the specimen that i had preserved in a ziplock bag. The holistic doctor I was seeing literally close his eyes and kept them closed until I put away the photos. At the ER a terrified young doctor agreed that it definitely looked like a tapeworm, and, looking very shaken, after a short google search prescribed me one dose of a medicine that was usually prescribed for 7-14 days. Not enough. Stool tests came back negative, but I tended to believe my eyes, and the ziplock bag, more than tests.

Once again, I had to make do without medical care.

The Great Parasite War needs its own post, but to cut it short, after various (also pharmaceutical) antiparasitic medications and remedies, I kept the beasts in check thanks to a combination of fermented garlic, pumpkin seeds to paralyse them and Diatomaceous Earth to kill them.

(One small note; after I passed the whole beast, more than 6 feet without counting the first bit, and I was finally free, the bump I had at the level of my duodenum disappeared, my gallbladder issues disappeared, and the depression vanished overnight. My mental health was back to its original state (which doesn't say much, ok) but I didn't feel that despair anymore. I wish more people knew how parasites can affect a lot of functions in the body. End of note)

Again I was eating to get healthy. At some point while living in the smelly house, I developed an intolerance to my beloved brown rice. Or all rice. Little did I know that it wasn't much the rice, but the mycotoxins often found in the rice. Or miso. I was so sad to react to miso. I didn't know that Miso is made with one sub-species of Aspergillus. And that a far cousin of his was actually living in my bowels.

(continue....)

Remember: “Sometimes the most beautiful view comes after the hardest climb 🧗‍♀️” what ever you are going through just know that you are not alone and you will get through this - stay strong 💪 #PTSD #BorderlinePersonalityDisorder #mold illness CIRS #StayStrong