Lara’s story
Takeaways:
Mould (in addition to respiratory effects), as a biotoxin, can be a key driver in numerous conditions especially complex illnesses (ME/CFS, fibromyalgia, autoimmune diseases, depression), histamine issues, dysautonomia, cognitive impairment and those with sensitivities to smells, foods, meds (histamine related), also look up chronic inflammatory response syndrome (CIRS).
It WILL be missed by mainstream health professionals and it will very commonly be missed by natural health practitioners as well due to lack of awareness.
Consider that it may be a driver in your condition and start reading about it and finding a practitioner who understands mould illness and its effects on health.
If mould is a cause for you, you need to get out of that environment to have any chance of recovery
I was sick with ME/CFS at about 30% functionality with no hope of recovering for nearly 7 years before we found the cause. Every year I thought: surely if I keep resting and doing good things for myself then this year I will get better. But without finding the primary driver(s) then that simple isn’t true. It took years to uncover that mould was my primary driver. This took multiple practitioners and thousands and thousands of dollars in testing various other possible causes and trying treatments. These all made very little difference - maybe 5% improvement - my daily life was still hell.
This hell looked like lying in bed most of the day exhausted to my core and muscle aches and pain just from existing, cognitive impairment where I struggled to write or read at my worst, to spending an hour on screens leading to a crash, being breathless and fatigued walking to the kitchen or bathroom, exhausted after 10 hours of sleep each night, waking in the night, aching arms from washing my hair, unable to tolerate the sun in the worse days, unable to walk outside most days due to the energy it would take to do so, histamine intolerant and a racing heart on standing that would lead to a flare of all symptoms (POTS, they often go together), irritable bowel syndrome, reflux, light and noise sensitivity, wearing black glasses inside and outside, curtains closed, sensitivity to smells causing nausea and headaches, losing weight, unable to exercise due to post-exertional malaise (PEM, where every organ system flares and you’re incapable of functioning till the PEM subsides, literally just feels like being ‘inflammed’), unable to walk longer than 5 minutes on great days, needing a walking stick on bad days and a wheelchair on worse days, no money from years of no income, unable to work or study in any capacity, part-time work always needing to be stopped due to being too ill to maintain a one morning, once a week job. And this hell was better than the hell of those with severe and very severe ME/CFS.
We eventually found that the key driver of my ME/CFS was mould exposure in the house we were living in and we realised, in hindsight, that I became sick within 9 months of moving in there.
No one had put together that the house we moved into was a key factor in the history of when I became unwell. A cheap dust test (which a practitioner advised) did not catch it, VCS testing did not pick it up as I was only positive once then negative after 1x round of binders so it did not confirm, OATS test missed it. We knew that we had some mould on the windows and a bit of mould growing on the wall, that a practitioner helped us recognise, which we cleaned off with mould cleaner, but the practitioners we dealt with had never put together the fact we had mould growing like that and I was exposed to that for years may have been the clue or that since I had mould toxin on board then doing some cleaning off the walls was not going to fix what was going on in my body or stop further exposure from the source of mould which we couldn't see.
It took years of agony and feeling I was just sick in the head or just sick because of ‘repressed trauma’ and stress to eventually find my answer, because my sanity, and my very life and future hung in the balance, determined to leave no stone unturned we found this core driver of my illness. But it was incredibly lonely and traumatic to go through, people talk about trauma and stress leading to illness but not the other direction: about how traumatic (powerless) and stressful (in every respect including the isolation) it is to be sick when no one can figure out why.
When we insisted on figuring out if mould was why I was sick:
We were told doing the urine mycotoxin test was a waste of time and came to realise that was true, especially if you are a poor excreter of mycotoxins (due to detoxification and immune system issues).
So we did the air testing by a building biologist (who by training are aware of the health impacts of mould beyond respiratory condtions and allergies) which is the main one available in NZ and gold standard here; ERMI is gold standard overseas but not as practiced her. It cost about $2400, which we had to borrow to do.
The results from the house were that the room I got sick in had 72x the healthy levels of Aspergillus/Penicillium, the lounge 72x as well, and then the room I moved to (where I developed even worse symptoms) had Stachybotrys chartarum in it (80x level of healthy) and Aspergillus/Penicillium 14x level of normal, and these results were in a time of year where the tester expected them to be low.
We completely broke down when we received the results, I think my heart simultaneously broke and sighed deep relief to finally finally finally have an answer, to know I wasn’t mad and just ‘stressed’, I was stressed and sick for a reason, something really was driving my illness and we had finally figured it out.
Mould can manifest in myriad health issues.I was the only one in the house that got sick with CIRS - chronic inflammatory response syndrome secondary to biotoxin illness - from the mould exposure but I also had POTS, histamine intolerance, and a constant feeling of anxiety. My father died of a lung condition in the house, likely years before he otherwise would've and he was on steroids, so was immunocompromised, all a recipe for mould exacerbated demise. And my mother developed early stage Alzheimers Disease at age 60 in that house and we both had terrible hayfever (very common with mould), and she had lived there for 10 years, so undoubtedly mould exposure played a major role in her early deterioration (mould is a neurotoxin and enhances neuroinflammation). My partner got cold viruses all the time and his ADHD was worse in that house which is all consistent with mould exposure.
When we got the results we were advised to not go back in the house. We looked for a new place immediately and moved out in 2 weeks which you can imagine was hell when you are incredibly debilitated, I was unable to go back inside without protective gears - proper mask, glasses, zip up suit, foot protection. Most people did not believe that mould illness was real so we were met by disbelief, doubt and a general lack of support.
We had to throw away everything (furniture, electronics, sentimentals, photos) that wasn't glass or metal (and thus could be cleaned) as they had all been exposed and anything wooden needed to be thrown as they could spore. Some sentimental things are kept in boxes but we can never really look at them anymore.
We kept our clothes and some shoes, shoes live outside, and thin clothes had to be washed 3x with a whole protocol and dried in the sun. And we started again in a different house with all new cheap furnitures and airbeds and though we upgraded our beds we are still shellshocked and don’t own much anymore, for fear that we may have to throw it away.
It takes about 1-2 years on average to recover from mould illness but can be longer. For the first month or so, I got worse before I got better, which is common. Then I quickly started improving: my menstrual cycles re-regulated almost instantly, anxiety dissipated, I began to put on weight, allergies and sensitivities improved, began to sleep through the night, was able to walk around the house more and walk outside.
The biggest change was my exercise capacity changing after 8 months where I started with 3 min walks and slowly walked all the way up to 45min walks and 15 min runs, then playing squash again, and just having more energy and capacity for life. Going from doing as much as I would do in a month to then being able to do that in a week, and eventually a couple of days. I am about ~90% functional now, 2 years living out of mould, depending on life circumstances, I still have a way to go to be 100% recovered but compared to my 20-30% functionality I lived with for 8 years, this is heaven (see the scale here https://www.actionforme.org.uk/uploads/pdfs/functional-ability-scale.pdf)
I did not do the shoemaker protocol, but main tenets were: go low and slow as the body has a significant toxin load on board. Eat cleanly (but I could not always). Gut health and detoxification support - nutrients and herbs. Sauna - infrared / sweat out toxins. Sleep - before 12am and get up with the sun. Binders - (activated charcoal and bentonite clay) to bind the mycotoxins associated with the moulds I was exposed to, but some practitioners advise binders that have broad coverage as one could have been gradually exposed to different mould species over ones lifetime). Mitochondrial support and HPA axis support - B vitamins, all the vits and minerals
I want to say having a low stress environment but my life is evidence that that isn't true as I have recovered remarkably in the most stressful of circumstances, so there is that.
It is absolutely heartbreaking to realise you are sick due to an environmental cause, realising if we never moved into that place I would never have been sick like that and lost about 10 years of my life and because I got sick and lost years and years of income we then could not buy a house as planned and we were going to buy a house for us and my parents so they would have moved out of there too.
Such is life. So many go through such unfair circumstances and people and families who have been sick from mould are often so isolated and disenfranchised in their losses.
What I am grateful for is we realised apparently 'early' compared to when many people find out which could be more like 10-20 years down the track of living with debilitating illness.
I am so grateful for Gary's support and the great kindness of those compassionate people who supported us with testing and supplements costs when we were too broke dealing with all this to afford them.
I am grateful for our determination to never stop searching for answers and for doing the work to heal and rebuild.
In total, I’ve lost a decade of my life. I only hope this snippet of my story may help others to join the dots, and earlier than I ever got to, before any more years of your lives are lost.
Takeaways:
● Mould (in addition to respiratory effects), as a biotoxin, can be a key driver in numerous conditions e.g ME/CFS, fibromyalgia, autoimmune diseases, depression), histamine issues, dysautonomia, cognitive impairment and those with sensitivities to smells, foods, meds (histamine related), also look up chronic inflammatory response syndrome (CIRS)
● It WILL be missed by mainstream health professionals and it will very commonly be missed by natural health practitioners as well due to lack of awareness
● Consider that it may be a driver in your condition and start reading about it and finding a practitioner who understands mould illness and its effects on health
● If mould is a cause for you, you need to get out of that environment to have any chance of recovery