My Neurological Nightmare

Scary Neurological Symptoms

In May 2021, I was under huge amounts of stress trying to open the London Integrative Mental Health Clinic. I had a wonderful team including an integrative psychiatrist, an integrative GP, a nutritionist and a psychotherapist, as well as a health coach. We had a beautiful website, patients waiting for appointments, and offices in Harley Street, the prestigious medical section of London. We even managed to get CQC registration, the tough UK medical board stamp of approval, which was no mean feat given that we were launching pioneering integrative mental health treatment.

It was an incredibly stressful time to get everything up and running, and stressful financially as I was bank-rolling it. But my stress levels went through the roof when I started to have strange symptoms which I had never experienced before, which no one seemed to be able to explain, and which painted a scary picture of neurological issues, possibly even neurodegeneration:

• I first noticed that I could not hold a yoga pose without shaking. It was a subtle ripple in my thigh muscles and legs, but visible to the naked eye.
• Then I noticed that my left leg felt wooden and draggy when I walked.
• I started having muscle twitching (fasciculations) – the type that you can get on your eyelid occasionally (known as myokymia) – but I was getting it all over my body – thighs, fingers, shoulders, abdomen, arms, neck, back and face. It started subtly, a slight twitch on the lip for instance, for several months, but increased until I was getting dozens a day all over my body.
• Then I noticed that I had a sort of inner tremor, like a Parkinson’s tremor but internal, not yet so advanced that others or even I could see it with the naked eye, but advanced enough that I could feel it very clearly.
• I started feeling muscle weakness, and a sort of overall exhaustion, so much so that there were days that l would have a hard time holding my head up.
• I would often wake up with numbness and pins and needles in my fingers, hands and arms.
• I started noticing recurring bruising on my limbs.
• I sometimes felt dizzy and light headed.
• I would feel the most extraordinary bubbling/popping feeling in my calves mainly, almost like champagne bubbles popping beneath the surface of my skin which I later learned were called “crepitations”,  also known as smaller fasciculations.
• I was having more frequent cramps than usual in my feet.
• I started having night sweats which did not seem hormonal as they would happen in the middle of my cycle.
• My nasal mucous was often streaked with blood.
• I would feel strange shooting pains in my bones and muscles.
• I would feel a buzzing sensation in my limbs, like a small vibrator inside my muscles, again very subtle, but very noticeable to me.

In the approximately four or five months leading up to these symptoms, I had developed huge anxiety which felt physiological rather than psychological, and also intense itching on my stomach and back and limbs which would come and go but sometimes made me crazy to the point where I would reach for whatever utensil I could find to scratch myself until I broke the skin.

Being a hypochondriac, I feared the worst. To be fair, Dr. Google promised me the worst, and my symptoms seemed to create a very clear picture of one of the dreaded neurodegenerative diseases: the possible diagnoses seemed to be ALS (Motor Neurone Disease) which was highly correlated with muscle fasciculations, Parkinson’s (the tremor), MS (the weakness and exhaustion as well as the numbness).

This all added to my panic, as having a tremendous fear of disease and death (especially a slow painful one), I could not contemplate these options without descending into a spiral of panic. I became hyper-vigilant and primed to notice my symptoms even when they were subtle. This created a vicious circle in which my symptoms became overwhelming and ubiquitous, and would bring on panic attacks and insomnia, which in turn no doubt exacerbated my symptoms.

My team of wonderful clinic practitioners told me it was anxiety. I didn’t buy it. I’d had anxiety my whole life, and it was a familiar old friend, but I’d never had these very visible-to-the-naked eye bodily movements and sensations. I took videos of my muscle twitching in my lips and fingers, and showed the lovely psychiatrist on my team. She admitted that this was NOT anxiety.

I refused to see a neurologist as I was terrified of hearing the worst, and just soldiered on, hoping that the summer holidays would bring some relief.

They didn’t, and if anything, my symptoms worsened and I spent most of my time on a lounge chair in Greece, listening to Stephen Porges’ Safe and Sound protocol, trying to calm myself down, ignoring my friends as well as my children, who, being teenagers, were luckily occupied with their own friends and were happy to ignore me too.

Detective Work and Diagnosis

I decided I had to put the London Integrative Mental Health Clinic on hold and prioritise my health. I flew to California to work with my functional medicine doctors and did a battery of tests, including a neuroquant MRI, which is an MRI which also looks at volumes in different parts of the brain and cross-references them against a reference range. While my MRI was normal, my volumetrics were in the 1st percentile in some of the lower brainstem areas, which showed apparently a loss of blood flow, and in the 98th percentile in the hippocampus, which apparently indicated inflammation.

I had low DHEA, low progesterone, low ferritin, Epstein Barr Virus and Herpes Simplex 1 reactivation, mercury that was off the charts, and ANA antibodies. None of these on their own seemed to explain my symptoms though, but maybe in conjunction? My functional medicine psychiatrist Dr. Kat Toups, and GP Dr. Neil Nathan, as well as my naturopath Dr. Heather Sandison, said that their working theory was mould toxicity and asked if I had been exposed to mould?

I grew up in a mouldy home. My mother had dementia which I always felt might be due in part to our mouldy basement above which she had lived for 47 years. And more recently, the house I rented in the countryside during lockdown smelt mouldy and musty.  And my two sons had strange symptoms – the youngest would get migraines, the eldest would have hot flushes with intense periods of itching. These can be symptoms of mould, but I had no idea at the time. I later had that house tested by Mycometrics by gathering dust from different rooms on fibre cloths and sending them in plastic bags to the US, and surprise surprise, it was incredibly mouldy and full of mycotoxins.

I also had myself tested. The first mould test I did was from the Great Plains Laboratory (now renamed Mosaic Labs and they have a new mycotoxin test which has just come out). This test was unprovoked, so without glutathione, the molecule that would help flush the mycotoxins (the toxins released by mould spores) out of the cells and into the urine, and came back negative. There went that theory, so I went back to stressing about a neurodegenerative disease. Dr. Kat Toups said that my detox pathways were doubtless compromised, so I would need to provoke the detox process by taking glutathione for a few days before my test.

In September, five months after I had started having symptoms, my second mould test, this time by Real Time Labs, and this time provoked with glutathione, came back floridly positive with 5 different types of mycotoxins (Ochratoxin, Aflatoxin Group, Trichothecene Group, Gliotoxin and Zearalenone).

Mould, Mycotoxins and their Health Effects

This would explain all my symptoms, according to my practitioners, and had to be treated quickly and completely as chronic mould toxicity can lead to a host of other problems such as cancer,www.ncbi.nlm.nih.gov/pmc/articles/PMC4603560/ Hokeness K, Kratch J, Nadolny C, Aicardi K, Reid CW. The effects of fungal volatile organic compounds on bone marrow stromal cells. Can J Microbiol. 2014 Jan;60(1):1-4. doi: 10.1139/cjm-2013-0708. Epub 2013 Nov 15. PMID: 24392920; PMCID: PMC4603560,  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9266006/ Ekwomadu T, Mwanza M, Musekiwa A. Mycotoxin-Linked Mutations and Cancer Risk: A Global Health Issue. Int J Environ Res Public Health. 2022 Jun 24;19(13):7754. doi: 10.3390/ijerph19137754. PMID: 35805411; PMCID: PMC9266006 neurodegeneration,www.imrpress.com/journal/JIN/22/6/10.31083/j.jin2206137/htmMojtaba Ehsanifar, Reihane Rajati, Akram Gholami, Joseph P Reiss. Mold and Mycotoxin Exposure and Brain Disorders. J. Integr. Neurosci. 2023, 22(6), 137. https://doi.org/10.31083/j.jin2206137www.sciencedirect.com/science/article/pii/S2093791119306419Saija Hyvönen, Jouni Lohi, Tamara Tuuminen,Moist and Mold Exposure is Associated With High Prevalence of Neurological Symptoms and MCS in a Finnish Hospital Workers Cohort,Safety and Health at Work, Volume 11, Issue 2, 2020, Pages 173-177, ISSN 2093-7911, doi.org/10.1016/j.shaw.2020.01.003.www.ncbi.nlm.nih.gov/pmc/articles/PMC4982651/www.ncbi.nlm.nih.gov/pmc/articles/PMC4982651/ (5) Pizzorno J, Shippy A. Is Mold Toxicity Really a Problem for Our Patients? Part 2-Nonrespiratory Conditions. Integr Med (Encinitas). 2016 Jun;15(3):8-14. PMID: 27547160; PMCID: PMC4982651. (Dr. Dale Bredesen refers to the cognitive effects of mould as “Inflammation Alzheimer’s”),www.ncbi.nlm.nih.gov/pmc/articles/PMC4789584
Bredesen DE. Inhalational Alzheimer’s disease: an unrecognized – and treatable – epidemic. Aging (Albany NY). 2016 Feb;8(2):304-13. doi: 10.18632/aging.100896. PMID: 26870879; PMCID: PMC4789584. , Parkinson’s,www.rutgers.edu/news/symptoms-parkinsons-disease-linked-fungusFungal-derived semiochemical 1-octen-3-ol disrupts dopamine packaging and causes neurodegeneration Arati A. Inamdar, Muhammad M. Hossain, Alison I. Bernstein, +2, and Joan Wennstrom Bennett doi.org/10.1073/pnas.1318830110, www.ncbi.nlm.nih.gov/pmc/articles/PMC7053320/ Pisa D, Alonso R, Carrasco L. Parkinson’s Disease: A Comprehensive Analysis of Fungi and Bacteria in Brain Tissue. Int J Biol Sci. 2020 Feb 10;16(7):1135-1152. doi: 10.7150/ijbs.42257. PMID: 32174790; PMCID: PMC7053320. www.sciencedirect.com/science/article/pii/S0306987717300774
Ketil Berstad, Johanna E.R. Berstad, Parkinson’s disease; the hibernating spore hypothesis, Medical Hypotheses, Volume 104, 2017, Pages 48-53, ISSN 0306-9877, Multiple Sclerosishttps://pubmed.ncbi.nlm.nih.gov/20214953/ Purzycki, C. B., & Shain, D. H. (2010). Fungal toxins and multiple sclerosis: a compelling connection. Brain research bulletin, 82(1-2), 4–6. https://doi.org/10.1016/j.brainresbull.2010.02.012 and even ALS,pubmed.ncbi.nlm.nih.gov/33631494/ Reid WK. Mycotoxins causing amyotrophic lateral sclerosis. Med Hypotheses. 2021 Apr;149:110541. doi: 10.1016/j.mehy.2021.110541. Epub 2021 Feb 15. PMID: 33631494
pubmed.ncbi.nlm.nih.gov/30515715/ French PW, Ludowyke R, Guillemin GJ. Fungal Neurotoxins and Sporadic Amyotrophic Lateral Sclerosis. Neurotox Res. 2019 May;35(4):969-980. doi: 10.1007/s12640-018-9980-5. Epub 2018 Dec 5. PMID: 30515715.
as well as brain fog, fatigue and a weak immune system which would allow the reactivation of dormant viruses such as EBV and other Herpes viruses. Indeed chronic exposure to mycotoxins affects the immune system and inflammation,www.sciencedirect.com/science/article/pii/S277241662200184X
Margaretha Viljoen, Nicolaas Claassen,
Pathophysiological aspects of exposure to dampness-associated indoor mould and mycotoxins: A mini-overview, Journal of Hazardous Materials Advances, Volume 9, 2023, 100228, ISSN 2772-4166, doi.org/10.1016/j.hazadv.2022.100228
www.mdpi.com/1422-0067/22/22/12269
Kraft S, Buchenauer L, Polte T. Mold, Mycotoxins and a Dysregulated Immune System: A Combination of Concern? International Journal of Molecular Sciences. 2021; 22(22):12269. https://doi.org/10.3390/ijms222212269
Yuhang Sun, Kehe Huang, Miao Long, Shuhua Yang, Ying Zhang,
An update on immunotoxicity and mechanisms of action of six environmental mycotoxins, Food and Chemical Toxicology, Volume 163, 2022, 112895, ISSN 0278-6915, https://doi.org/10.1016/j.fct.2022.112895.
www.sciencedirect.com/science/article/pii/S027869152200093X leading to a host of potential immune issues – including under-activity and overactivity. And apparently mould and mercury have a love story, which would explain my high mercury. Indeed, mould loves heavy metals, especially mercury, and in turn, mercury and other heavy metals make it harder to detox from mould.

Long term exposure to mould and mycotoxins, and to infections (such as Lyme, EBV, Herpes, etc.), especially when the immune system may be compromised by stress, lack of sleep and other poor lifestyle habits, can lead to a dysregulated immune response which is either overactive (as in autoimmune conditions such as MS, or Mast Cell Activation Syndrome) or under-active (increasing susceptibility to cancer and other illnesses).

I found it totally extraordinary that exposure to a natural biotoxin, albeit from water-damaged man-made buildings, could cause such health havoc. And in particular, it blew my mind that mould exposure could cause my strange neurological symptoms. I had read Dr. Neil Nathan’s “Toxic: Heal your body from Mold toxicity, Lyme disease, Multiple Chemical Sensitivities and other Environmental Illness” and remember being totally surprised by the symptoms he listed as possible from mould, including a feeling of “vibration” in the muscles. I thought “that sounds very unlikely. I wonder what on earth that might feel like!?”… I was soon to find out, as this also was one of my symptoms… the subtle feeling of a small vibrating machine in my muscles… it was surreal but undeniable. But most extraordinary, despite having read Dr. Nathan’s book and interviewed him for The MindHealth360 Show, and later on interviewed him and Dr. Jill Crista about mould, it had not once occurred to me that my neurological and psychiatric symptoms might be driven by mycotoxins, until my functional medicine doctors (including Dr. Nathan) suggested it.

Mould is a stealth operator, taking many guises, and its manifestations in the human body can be so wide and diverse that it is hard to pin down and identify with certainty.  Not for nothing, these bio-organisms and bio-toxins have been around for billions of years, and are hard to get rid of. And until one develops a sensitivity to mould and its mycotoxins, due to genetic and epigenetic factors affecting our immunity and resilience, many of us can cohabitate with mould and its mycotoxins without experiencing any symptoms.

Though who knows what the long term effects might be in terms of susceptibility of cancers and other chronic complex illnesses, especially as so many of us are probably living in its midst without realising it. Indeed, according to a 2022 report from the National Institute for Occupational Safety and Health Centers for Disease Control and Prevention, around 47% of all homes in the United States have some mould or dampness.https://realestate.usnews.com/real-estate/articles/is-your-home-a-health-risk-why-mold-may-be-lurking-in-your-home#:~:text=Key%20Takeaways%3A,sometimes%20you%20can%20smell%20mold.”Is Your Home a Health Risk? Why Mold May Be Lurking in Your Home” by Liz Brumer-Smith in News & World Report, April 11, 2024

The Gulf Between Functional Medicine and Mainstream Medicine

A few months later, I also decided to see a neurologist from the Cleveland Clinic, paradoxically reassured enough that it probably wasn’t a serious neurodegenerative disease that I was willing to submit to a conventional neurological exam. She gave me a clean bill of health despite my stomach muscle visibly twitching in her office and the videos of my fingers and lip twitching. She said she had no idea what was wrong with me, and yes could see the fasciculations, but she thought I had Myokemia (eye twitching)Jafer Chardoub AA, Patel BC. Eyelid Myokymia. [Updated 2023 Aug 8]. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2024 Jan-. Available from: www.ncbi.nlm.nih.gov/books/NBK560595
due to anxiety. I thought to myself “Lady, I’ve had anxiety my whole life but it’s never manifested in this way!” She said that there was “100% no way” that mould exposure was causing my symptoms.  Any doctor who is that sure of herself is slightly terrifying. I argued with her that did she agree that Parkinson’s was in large part a disease of dysfunctional mitochondria? She agreed on the basis of the latest scientific research,Henrich, M.T., Oertel, W.H., Surmeier, D.J. et al. Mitochondrial dysfunction in Parkinson’s disease – a key disease hallmark with therapeutic potential. Mol Neurodegeneration 18, 83 (2023). doi.org/10.1186/s13024-023-00676-7,
molecularneurodegeneration.biomedcentral.com/articles/10.1186/s13024-023-00676-7Kevin Zambrano, Diego Barba, Karina Castillo, Luis Noboa, Dariana Argueta-Zamora, Paola Robayo, Eduardo Arizaga, Andres Caicedo, Antonio W.D. Gavilanes,
Fighting Parkinson’s disease: The return of the mitochondria, Mitochondrion, Volume 64, 2022, Pages 34-44, ISSN 1567-7249,
doi.org/10.1016/j.mito.2022.02.003.
www.sciencedirect.com/science/article/pii/S156772492200011 but still refused to see the correlation between mould and my symptoms. We know that mitochondrial function is affected by toxins such as mycotoxins,https://pubmed.ncbi.nlm.nih.gov/30180298/
Islam MT, Mishra SK, Tripathi S, de Alencar MVOB, E Sousa JMC, Rolim HML, de Medeiros MDGF, Ferreira PMP, Rouf R, Uddin SJ, Mubarak MS, Melo-Cavalcante AAC. Mycotoxin-assisted mitochondrial dysfunction and cytotoxicity: Unexploited tools against proliferative disorders. IUBMB Life. 2018 Nov;70(11):1084-1092. doi: 10.1002/iub.1932. Epub 2018 Sep 4. PMID: 30180298.
and therefore it stands to reason that chronic exposure to mycotoxins can impact mitochondrial function in the brain, a known contributor to neurodegeneration.https://www.sciencedirect.com/science/article/pii/S1878747923019001 {18}
Madelyn M. Klemmensen, Seth H. Borrowman, Colin Pearce, Benjamin Pyles, Bharatendu Chandra, Mitochondrial dysfunction in neurodegenerative disorders,Neurotherapeutics, Volume 21, Issue 1, 2024, e00292, ISSN 1878-7479,
https://doi.org/10.1016/j.neurot.2023.10.002.https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6078194/ {19}
Zolkipli-Cunningham Z, Falk MJ. Clinical effects of chemical exposures on mitochondrial function. Toxicology. 2017 Nov 1;391:90-99. doi: 10.1016/j.tox.2017.07.009. Epub 2017 Jul 27. PMID: 28757096; PMCID: PMC6078194
I asked her about my tremor. She said “once it becomes visible come back”. By then, I thought, it will be too late.

It was a rather eye opening experience of the absolute gulf between mainstream and functional medicine, and I felt incredibly sorry for people who do not have access to functional medicine and have to rely on outdated approaches to their health by mainstream medicine.

Mainstream medicine is best equipped to treat acute syndromes once the symptoms are well established and the damage is done. It is often woefully inadequate when it comes to prevention, complex chronic illness and thinking outside the box.

What I did to Recover

Getting out of the mould and remediating!

One cannot recover from mould toxicity unless one is prepared to completely get out of the mould. It’s that simple. Sometimes this is incredibly hard for people, expensive, exhausting and very disruptive. But it’s worth it for your health.

I moved out of the lockdown house in the country. I had my house in London tested by Building Forensics and Action Dry, two UK companies who work in home mould detection. Sure enough, it was also mouldy. Unbeknownst to me, every bathroom in my house had been leaking silently and under the tiles was mould. The ceiling in my bedroom had an inch thick of mould under the white plasterboard, and the kitchen floor had hidden leaks from the fridge, the radiators and the sink. There was no smell, and you couldn’t see any signs of mould. But the mycotoxin levels in the house were very high.

I moved out and spent nine months remediating the place with the help of some great builders and Action Dry. I got rid of all my upholstered furniture, as once you are sensitised, even the invisible and dead mycotoxins in fabrics can cause neuroinflammation according to Dr. Mary Ackerley, who interpreted my neuroquant brain scan and is a psychiatrist well versed in mould illness. I begged her to let me keep my sofas at least “Well, if you want to get Parkinson’s in a few years, keep them. 98% of people would be fine with those sofas, but now that you are sensitised, you’re susceptible”. Needless to say I got rid of them all. I bought a lot of EC3 laundry additive and washed all my clothes, sheets and towels in it. I replaced all the wall to wall carpets with wooden floors which are less likely to harbour mould spores and mycotoxins. Luckily my insurance covered a lot due to the water damage which they recognized (mould damage they did not).

I spoke to an American architect who told me that in the US, the majority of insurance claims and landlord legal battles used to be around asbestos, now they are around mould. In the UK however, we are several years behind the US when it comes to awareness around the health hazards of water damaged buildings, mould and mycotoxins.

Binders and detox supplements

I started taking binders — charcoal, bentonite and zeolite clay, chlorella, and cholestyramine to bind to the mycotoxins and escort them out of my body, and took them for several years, every day. I also took detoxification supplements such as glutathione, milk thistle, alpha lipoic acid, sulforaphane (this was a game changer for me). Even to this day I still take chlorella daily, as it’s a gentle detox supplement which helps bind moulds and heavy metals safely and effectively. It is important to note that different people have different levels of tolerance for binders. Very sensitive people might find that they need to start very slowly with very small doses of binders. Taking too many binders too quickly can overwhelm the detoxification systems, and exacerbate symptoms.

Anti-Oxidants, vitamins, minerals

Mycotoxins can cause oxidative stress You, L., Nepovimova, E., Valko, M. et al. Mycotoxins and cellular senescence: the impact of oxidative stress, hypoxia, and immunosuppression. Arch Toxicol 97, 393–404 (2023). https://doi.org/10.1007/s00204-022-03423-x, https://link.springer.com/article/10.1007/s00204-022-03423-x  Mycotoxins and oxidative stress: where are we? 1Universidade Estadual de Londrina, Laboratory of Animal Pathology, Campus Universitário, Rodovia Celso Garcia Cid, Km 380, Londrina, Paraná 86051-990, Brazil,Corresponding author: ana.bracarense@pq.cnpq.br; isabelle.oswald@inra.fr, 2Université de Toulouse, Toxalim, Research Center in Food Toxicology, INRA, UMR 1331 ENVT, INP-PURPAN, 31076 Toulouse, France, World Mycotoxin Journal: 11 (1)- Pages: 113 – 134 https://doi.org/10.3920/WMJ2017.2267 Published Online: February 07, 2018, https://www.wageningenacademic.com/doi/abs/10.3920/WMJ2017.2267?role=taband it’s important to supplement with anti-oxidants such as vitamin C, E and A, as well as polyphenol and anti-oxidant rich foods. Mycotoxins also deplete B vitamins, especially B12 Anyanwu, E. C., & Kanu, I. (2007). Biochemical impedance on intracellular functions of vitamin B12 in chronic toxigenic mold exposures. TheScientificWorldJournal, 7, 1649–1657. https://doi.org/10.1100/tsw.2007.113, https://pubmed.ncbi.nlm.nih.gov/17982599/ and B1 Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition, by Derrick Lonsdale (Author), Chandler Marrs, July 2017, so it’s important to supplement with a good B complex. And of course vitamin D is essential for the immune system and neuroendocrine balance, and can be depleted by mould.https://drcrista.com/2021/07/21/molds-effect-on-vitamin-d-labs/#:~:text=People%20think%20well%20it%20must,absorb%20it%20into%20your%20bloodstream.

Mould can also deplete minerals such as zinc and magnesium, and it’s important to replenish these https://navacenter.com/the-role-of-nutrition-in-resolving-mold-toxicity/#:~:text=Minerals%20such%20as%20zinc%2C%20magnesium,symptom%20exacerbation%2C%20and%20further%20depletion.

Gut healing, diet and membrane healing

Healing my gut was also key, and I took colostrum, sodium butyrate, glutamine and zinc to rebuild the intestinal barrier, as well as spore-based probiotics and saccharomyces boulardii (also a known binder for Gliotoxin in particular) to address my gut dysbiosis. I eliminated sugar as much as possible, as well as grains (which are often mouldy and inflammatory, as well as high in carbohydrates), and try to eat a paleo/keto combination diet high in vegetables and healthy fats, medium in proteins, and low in carbs (sugars, grains). This helps keep any internal, systemic mould colonies which can be present in the gut, nasal passages, sinuses, and even brainhttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC3920250/
Brewer JH, Thrasher JD, Hooper D. Chronic illness associated with mold and mycotoxins: is naso-sinus fungal biofilm the culprit? Toxins (Basel). 2013 Dec 24;6(1):66-80. doi: 10.3390/toxins6010066. PMID: 24368325; PMCID: PMC3920250.
https://www.researchgate.net/publication/358749321_Molds_Mycotoxins_the_Brain_the_Gut_and_Misconceptions
TY – JOUR AU – Campbell, Andrew AU – Weinstock, Leonard PY – 2022/02/21
Molds, Mycotoxins, the Brain, the Gut and Misconceptions Volume 28, No.23 – Alternative Therapies in Health and Medicine
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5834427/
Liew WP, Mohd-Redzwan S. Mycotoxin: Its Impact on Gut Health and Microbiota. Front Cell Infect Microbiol. 2018 Feb 26;8:60. doi: 10.3389/fcimb.2018.00060. PMID: 29535978; PMCID: PMC5834427 in check. Dr. Jill Carnahan has some very helpful mould and gut healing protocols. 

Recently I have started taking Phosphatidylcholine to renew the lipids of my cell membranes, probably damaged by the mycotoxins. https://www.sciencedirect.com/science/article/pii/S1751731119002593
I. El Cafsi, S. Bjeoui, I. Rabeh, S. Nechi, E. Chelbi, M. El Cafsi, A. Ghram,
Effects of ochratoxin A on membrane phospholipids of the intestine of broiler chickens, practical consequences, Animal, Volume 14, Issue 5, 2020, Pages 933-941, ISSN 1751-7311,
https://doi.org/10.1017/S1751731119002593https://www.jillcarnahan.com/2021/09/21/what-is-phosphatidylcholine-pc-plus-its-impressive-role-in-healing-mold-illness/

Anti-fungals and antibiotics

I also took anti-fungals and antibiotics for a period of time, which did seem to help. But the use of either is controversial in the integrative community, with some practitioners saying they are essential in order to truly eradicate mould, while others say they can backfire and cause resistance, as well as being hard on the liver.

Other detox and lifestyle interventions

Doing infrared sauna, which I try to do twice a week, and dry skin brushing which I try to do daily, as well as getting enough exercise have been key to my detoxification.

Sleep is also key, and I really notice a difference in my symptoms when I don’t get enough of it.

Other things that help my symptoms are red light therapy to boost mitochondrial function, cold showers after every hot shower to boost mitochondrial function, and peptides to reset the Central Nervous System.https://pubmed.ncbi.nlm.nih.gov/21477861/
Malavolta L, Cabral FR. Peptides: important tools for the treatment of central nervous system disorders. Neuropeptides. 2011 Oct;45(5):309-16. doi: 10.1016/j.npep.2011.03.001. Epub 2011 Apr 7. PMID: 21477861.

I also tried microcurrent which helped somewhat.https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9941239/#:~:text=Microcurrent%20is%20a%20non%2Dinvasive,endogenously%20by%20the%20human%20body. Kolimechkov, S., Seijo, M., Swaine, I., Thirkell, J., Colado, J. C., & Naclerio, F. (2023). Physiological effects of microcurrent and its application for maximising acute responses and chronic adaptations to exercise. European journal of applied physiology, 123(3), 451–465. https://doi.org/10.1007/s00421-022-05097-w

Nervous system reset

Daily meditation has been helpful to help calm my nervous system, as was the Gupta programme, so that I was less hypervigilant and didn’t over-react to physiological stressors such as toxins, mycotoxins and lack of sleep, or psychological ones, such as the fear of illness.

The Roller-Coaster of the Healing Journey

My symptoms got 50% better after a couple of months of treatment. They continued to improve but then plateaued once they reached 70% improvement after about a year. For the last three years I have not been able to get them 100% better, but they hover around 80-90% which is good enough, as long as the trajectory is stable or upwards. I do have moments where they go back down to 60%, but usually it’s when I am re-exposed to mould, or detoxing heavily with glutathione or phosphatidylcholine. This is because I am very sensitised to mould now, and when I go into a mouldy hotel, home, office or aeroplane and am exposed to exogenous mycotoxins, or to endogenous ones released from my own cells when I take supplements which flush them out such as glutathione or phosphatidylcholine – any exposure to mycotoxins, internal or external, brings back my fasciculations and tremor.

Stress, lack of sleep, processed or gluten foods, peanuts, cashews (notoriously mouldy), and sugar, can all set me off and exacerbate my symptoms. Basically, anything that contributes to inflammation drives my symptoms.Skaper, S. D., Facci, L., Zusso, M., & Giusti, P. (2018). An Inflammation-Centric View of Neurological Disease: Beyond the Neuron. Frontiers in cellular neuroscience, 12, 72. https://doi.org/10.3389/fncel.2018.00072, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5871676/ Degan, D., Ornello, R., Tiseo, C., Carolei, A., Sacco, S., & Pistoia, F. (2018). The Role of Inflammation in Neurological Disorders. Current pharmaceutical design, 24(14), 1485–1501. https://doi.org/10.2174/1381612824666180327170632, https://pubmed.ncbi.nlm.nih.gov/29589534/ Dias-Carvalho, A., Sá, S.I., Carvalho, F. et al. Inflammation as common link to progressive neurological diseases. Arch Toxicol 98, 95–119 (2024). https://doi.org/10.1007/s00204-023-03628-8, https://link.springer.com/article/10.1007/s00204-023-03628-8#citeas Having Covid a year after my diagnosis made my symptoms much worse, as according to Dr. Neil Nathan, Covid exploits your weaknesses and can exacerbates existing symptoms.

Any exposure to toxins such as moulds,https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8619365/
Kraft S, Buchenauer L, Polte T. Mold, Mycotoxins and a Dysregulated Immune System: A Combination of Concern? Int J Mol Sci. 2021 Nov 12;22(22):12269. doi: 10.3390/ijms222212269. PMID: 34830149; PMCID: PMC8619365.
and heavy metalshttps://www.sciencedirect.com/science/article/abs/pii/S2468202021000127
Stephen C. Bondy, Metal toxicity and neuroinflammation, Current Opinion in Toxicology,
Volume 26,2021,Pages 8-13,ISSN 2468-2020, or pathogens such as viruses and bacteriahttps://www.sciencedirect.com/science/article/abs/pii/S2468202021000127
Stephen C. Bondy, Metal toxicity and neuroinflammation, Current Opinion in Toxicology,
Volume 26,2021,Pages 8-13,ISSN 2468-2020
https://link.springer.com/article/10.1007/s00702-023-02723-5
Sian-Hulsmann, J., Riederer, P. Virus-induced brain pathology and the neuroinflammation-inflammation continuum: the neurochemists view. J Neural Transm (2024). https://doi.org/10.1007/s00702-023-02723-5
www.frontiersin.org/journals/immunology/articles/10.3389/fimmu.2022.907804/full
AUTHOR=Tran Van Thi Ai , Lee Luke P. , Cho Hansang TITLE=Neuroinflammation in neurodegeneration via microbial infections JOURNAL=Frontiers in Immunology VOLUME=13 YEAR=2022 can cause chronic neuroinflammation. When combined with stress, which is also neuroinflammatory, it can cause a perfect storm leading to psychiatric and neurological symptoms.https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4828495/
Calcia MA, Bonsall DR, Bloomfield PS, Selvaraj S, Barichello T, Howes OD. Stress and neuroinflammation: a systematic review of the effects of stress on microglia and the implications for mental illness. Psychopharmacology (Berl). 2016 May;233(9):1637-50. doi: 10.1007/s00213-016-4218-9. Epub 2016 Feb 5. PMID: 26847047; PMCID: PMC4828495..

Exacerbating the difficulty is that once the system is sensitised, the cell danger response means that any threat, whether real or imaginary, physiological or psychological, can set off a cascade of detrimental immune, inflammatory and neuroendocrine responses.https://www.sciencedirect.com/science/article/pii/S1567724913002390#:~:text=The%20cell%20danger%20response%20(CDR)%20is%20an%20evolutionarily%20conserved%20cellular,bacteria%2C%20fungi%2C%20and%20parasites
Robert K. Naviaux, Metabolic features of the cell danger response, Mitochondrion,
Volume 16, 2014, Pages 7-17, ISSN 1567-7249, https://doi.org/10.1016/j.mito.2013.08.006..

There is also a theory that the toxins and pathogens and resulting immune response focuses on areas of weakness in the body. I know that my nervous system has always been a weak spot for me, so it doesn’t surprise me that this is where my symptoms manifested.

According to Dr. Beth O’Hara, an expert in mast cell activation syndrome, it can take on average 2-3 years to clear mould from the body, and in my case it has been just over 3 years and I’m finally feeling about 90% better, providing I keep taking my supplements, following lifestyle interventions such as sleep, exercise, sunlight, detox and relaxation, and staying out of mould, which can be more challenging than you would think!

Could you have mould toxicity?

If you have any of the following symptoms, you may want to get your home and your body tested for mould and mycotoxins.

• Emotional changes: Including anxiety, depression, and mood swings.
• Cognitive issues: Such as brain fog, confusion, and memory loss.
• Physical symptoms: Like fatigue, muscle aches, weakness and joint pain.
• Respiratory problems: Including sinus congestion, chronic cough, and asthma-like symptoms.
• Neurological signs: Such as headaches, dizziness, twitching, weakness, tinnitus, and numbness.
• Sensory disturbances: Including sensitivity to light, noise and smells.
• Digestive issues: Like changes in appetite, abdominal pain, and bloating.

If you do have mould exposure make sure to move out of the mould even if that means moving home, or if you have it remediated choose a reputable company that knows what they are doing, as a badly done remediation can make matters much worse. And make sure to detox your body and brain.

The last three years have been an emotional rollercoaster of sheer terror at the prospect of having a relentless neurodegenerative condition whenever my symptoms came back with a vengeance, or stalled and didn’t seem to get better. I am incredibly grateful to have access to functional medicine practitioners who look for the root cause of illness and use pioneering, out of the box treatments and strategies for healing which have helped me tremendously regain optimal health. After all, without addressing the mould, chronic mould exposure can contribute to neurodegeneration, as the many research studies referenced above show.

I hope that by sharing my experience I can help anyone suffering from any of these strange symptoms, and encourage anyone with CNS and neurological symptoms to make sure that they are not being exposed to mould, to test for mould in their homes and their bodies, and to understand that there are many things they can do to heal. Number one of which, without which no healing is possible, is to get out of the mould. And in the UK especially, people have a tendency to dismiss the mould theory as far fetched. Don’t listen to them. Inform yourself, and work with practitioners and people who are well versed in mould diagnosis and remediation, whether in your body or in your home. You can search for an integrative practitioner in your area in our MindHealth360 global database of practitioners.

Disclaimer: it goes without saying that the above is simply an account of my personal experience with mould, and some treatment interventions from which I benefited, with some published scientific evidence to corroborate and explain the mechanism of mould. Please do work with a qualified practitioner to implement your personalised mould treatment plan.