Mold toxicity

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    This part wants to tell the story of my close encounters with systemic mold (Aspergillosis) and the almost as devastating CIRS, Chronic Inflammatory Reaction Syndrome, that these encounters 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 food it in, I started having intense allergy-like reactions, sneezing, swollen nose, bronchitis.

    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, strange, terrifying symptoms popped up: the usual discomfort and insensitivity in arms and legs that I had for many years (I discovered lately, thanks to never treated 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 connect this with what I thought was “just” an allergic reaction, but I had no idea how the two things could be connected.

    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 I started sweating again, 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 give me a diagnosis after I got an electromyography. Either the technician messed up badly, either there was something really wrong in my nerves (mold?) but the Electromygraphy gave me horrifying pains 24/7 and completely paralysed me for 3 good months. The neurologist's only comment: "it's not possible". How do you argue with that?

    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 would bear that only for maximum one year, and if in one year’s time it hadn’t improved, I promised myself that I would check out of life and be free of 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 sour cherries. Weird, weird. Placebo effect? Who knows? Who cares?! the pain was cut in half.

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

    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.

    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 strikes with instant bronchitis, eyes started to tear out, the pain in arms and legs was back. In two days time, again I could hardly stand. And the whole room I had put the boxes in smelled like ancient curry. This time things were clear.

    
I got a test kit for mold and I put it in the room with the boxes. 3 different species (Aspergillus Niger, Aspergillus Flavus and A. Fumigatus) came out.

    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. 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 indicator, 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, 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. 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 Great Parasite War was in full bloom, but I was winning it. I thought everything was sorted out in that department, but I was wrong.

    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 the gross, horrific mold story)

    Community Voices
    Community Voices

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

    This part wants to tell the story of my close encounters with systemic mold (Aspergillosis) and the almost as devastating CIRS, Chronic Inflammatory Reaction Syndrome, that these encounters 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 food it in, I started having intense allergy-like reactions, sneezing, swollen nose, bronchitis.

    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, strange, terrifying symptoms popped up: the usual discomfort and insensitivity in arms and legs that I had for many years (I discovered lately, thanks to never treated 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 connect this with what I thought was “just” an allergic reaction, but I had no idea how the two things could be connected.

    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 I started sweating again, 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 give me a diagnosis after I got an electromyography. Either the technician messed up badly, either there was something really wrong in my nerves (mold?) but the Electromygraphy gave me horrifying pains 24/7 and completely paralysed me for 3 good months. The neurologist's only comment: "it's not possible". How do you argue with that?

    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 would bear that only for maximum one year, and if in one year’s time it hadn’t improved, I promised myself that I would check out of life and be free of 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 sour cherries. Weird, weird. Placebo effect? Who knows? Who cares?! the pain was cut in half.

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

    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.

    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 well 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 strikes with instant bronchitis, eyes started to tear out, the pain in arms and legs was back. In two days time, again I could hardly stand. And the whole room I had put the boxes in smelled like ancient curry. This time things were clear.

    
I got a test kit for mold and I put it in the room with the boxes. 3 different species (Aspergillus Niger, Aspergillus Flavus and A. Fumigatus) came out.

    But I was a newbie in the mold world and I didn’t know what to do. My poor mother came back again and we started washing. 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 indicator, 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, 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. 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 Great Parasite War was in full bloom, but I was winning it. I thought everything was sorted out in that department, but I was wrong.

    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 the gross, horrific mold story)

    Community Voices
    Community Voices
    Community Voices

    I am not saying that chronic illness - ALL kinds of chronic illness - isn't hard to bear and isolating in any case. Very few people want to deal with someone else's pain and discomfort, and for some "friends" canceling one meeting at the last minute, or mentioning in passing that one is not 100%, is already enough of a dealbreaker.

    Thing is, once in a blue moon you can find someone who is open to deal with a friend with an imperfect health. Maybe growing up they had a parent or relative with some kind of health issue, or they experienced difficulties in that department themselves, or they are doted with unusual compassion and open-mindedness.

    These friends will be willing to educate themselves on your condition, read articles, overcome the societal prejudice towards not perfectly able people and even invisible illnesses, and they will invite you in their lives.

    When I "just" had IBS, or gastric issues, or anxiety or even fibromyalgia and ME (which both used to be undoubtedly weird, even if now are getting normalised a bit) I was lucky enough to meet a couple of these "normo-abled" friends, who understood (sort of) my limitations and accommodated some of them.

    I was careful to keep them out of the darkest moments in my life, as it would have been an unnecessary grief to them and they wouldn't have understood anyway, and our relationship was with 3/4th of myself, there was always this dark corner that would never come to light.

    No need to mention that I rarely felt "heard" or "understood", but for me it was enough to feel accepted and still somehow play an active part in their life.

    All this changed abruptly after I met with mold. As I mentioned in other posts, after miraculously (a miracle prepared by years of hard work) recovering from ME and fibromyalgia (or rather than recovering, giving them their true name and treating them, name which in my case was Lyme and reactivated Epstein Barr), I enjoyed a few years of decent health before my body was wrecked havoc once again by a casual parasite and a close encounter with some mold species living in my house.

    The symptoms were even more violent and horrifying than ME, and remember that with ME for the most part of three years years I had to rest all day to be able to wash my hair, and couldn't walk more than some hundred yards without collapsing, so it wasn't exactly a cakewalk. Just like during the first year of ME, I had a hard time explaining to anyone what was happening because I didn't know it myself.

    Then, when the truth started unfolding, it turned out it's not so easy to tell people that you are basically dying because of a tapeworm plus assorted parasites, and mold growing inside of your bowels.

    First of all there is the "yuck" factor (make it capital letters). I don't know about you, but personally I didn't feel like telling a lot of people that I was basically a walking parasite depository, and I did kind of worry how that would project on my social image (the reaction of a couple of "friends" confirmed that I was correct in worrying). In a way it was more difficult to explain than back when I couldn't walk or move because of a mysterious retrovirus that no one could see (ME).

    Also, me being contagious wasn't completely out of the question, so they were right in feeling "yuck" towards me.

    For this reason during that period I mainly kept it to myself, never shared bottles or food with anyone, I accepted that I wasn't going to get any compassion for such a foul disease (two of them nonetheless, and concentrated on treating it.

    The coming of CIRS (the insane reactivity to many species of mold) and Multiple Chemical Sensitivity brought up a new set of problems. The people I knew who were ready to accommodate some of my needs did not understand why I had this new set of issues, couldn't stay inside a building, had to leave if someone with a very strong perfume entered the room, that was WEIRD. Too much weird. And remember that ME and fibro were already quite weird. Other "friends"left.

    In fact, if I had just kept being ill and courageously accepting my challenges, I might have met with the sympathy of some other compassionate people sympathetic to those who suffer. The problem is, the way I went about trying to save my life was also too much weird too handle for most people.

    If you ever have been told by conventional medicine that there is nothing to do and you need to live in unbearable conditions, you may also know that before giving up and accepting your fate it's better to try everything else that is possible, or even impossible.

    Although many complementary and holistic ways of treatment are completely sensible and have long lasting traditions and proof of use, for a lot of people anything that is not mentioned in the Mayo clinic website is too "woo-woo" to exist. In recent times sadly several complementary treatments have attracted the attention of various misleading media sources (you know which ones I am talking about, the ones with the crazy conspiracy theories) and this phenomenon doesn't help the treatment's reputation.

    Anyway, to get myself out of trouble I had to delve deep into the foreign territories of herbalism, orthomolecular medicine, osteopathy, energy healing, just to mention a few, and the couple of (holistic) doctors I found who helped me and saved my life were pretty much despised by the system.

    I always liked to be friends with reasonable people of culture devoid of particularly extreme views, but I discovered that most of those people held an irrationally violent prejudice against integrative or functional medicine. And a good portion of people with chronic illness (I painfully discovered that in my ME days) also shared that prejudice and despise and will not stand by me during my adventures in healing.

    So, while in the beginning being ill was 1/4th of my life that I couldn't share with anyone, then later my treatments were another 1/4th.

    That s where it gets even weirder. Since I have CIRS I get violent reactions to prolonged exposure to various types of mold, which is basically omnipresent in buildings, and because of that I can only live in hotels (W E I R D), while waiting to have the money and strength to go live in a van (these days more fashionable, but still weird). My lifestyle is so crazy that I don't have the heart to mention it to the few normal people I meet in my sporadic "normal life" situations, like classes or workshops or meetups. Needless to say that relationships with those people never get very far.

    It makes me sad that I literally never met anyone with my issues in real life, and I don't know how to deal with all this giant iceberg of weirdness that I carry around in the tangible daily life, feeling like a penguin at a wedding party.

    If by grace of a Higher Power I will get better (the parasites wars have been won, one mold colonisation has been defeated, the other mold is on its way out) I don't know how I can ever share my life with anyone. Should I just not mention any of the Hell I went through, and do like Holocaust survivors did, enjoy their new lease of life and go on, trying to forget?

    But once one's health has been ruined, there will always be some other issue, sooner or later, so I shouldn't forget, I can't forget. Also, I'd like to honour these years of hard work and ingenuity and fighting teeth and nails.

    Do I have to resign myself to never be seen and understood? Hide my past and my present, and basically lie most of the time? ("oh I forgot an engagement I have to leave, no, it's not because there is mold in this cafe, also because if I say it you won't believe me") Or do I accept that I will always be rejected because all this weirdness is just too much for anyone to bear?

    You will understand me now when I say that occasionally I miss the days when I "just" had a serious chronic illness.

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    Community Voices

    #Mold toxicity #mold illness CIRS Mold-free home

    Anyone who moved due to mold exposure, how did you find a mold-free home? We’re considering moving but it’s so hard to find somewhere (in budget) that would be safe for me. Any advice would be welcome!

    1 person is talking about this