*If you’ve followed my blog or Instagram account for more than five minutes, you’ll probably know I’m pretty black and white when it comes to (T)SW – give it time and eventually you’ll get better ... (T)SW is a drug withdrawal, not a skin condition ... diet hasn't got much to do with it ... yada yada yada, so I suppose this post deviates slightly from the concrete set of beliefs I've held for many years.
I started hearing about the link between mould (American spelling: mold) and respiratory/skin conditions around a year ago, and since then, it's become a subject which has fascinated me. How something like mould can have such a profound impact on your health is mind-boggling to me.
Before I share another word, I'd like to throw out my well-worn disclaimer that I am not a medical professional and anything shared in this post should not be taken as medical advice.
At first, I was a little reluctant to share this post because I know if I’d read about it during (T)SW, I would have been convinced that I had an allergy/intolerance to mould, so read with caution. The mind during withdrawal is a very sensitive organ, taking in everything like an anxious sponge, and sometimes information, no matter if it's of benefit to some, can end up doing more harm than good. This is what scares me about all the information surrounding (T)SW now – there is just SO MUCH of it, and most of it you don't even need. I am doing this for the people who might not have a clue it exists and could answer a lot of questions for them. And so, now that I've got that out of the way, we'll get on with the post.
What is mould?
Mould/Mold is a proud member of the fungus family, and a loving relative of other members of the fungus family like mushrooms and yeast. Found practically everywhere, mould plays a very important role in the ecosystem by decomposing dead organic material, and is also integral in the fermentation of food and drinks, and in antibiotics such as Penicillin. Mould grows when there is excess moisture present in an environment, especially where there is limited/no sunlight or bad ventilation. Give mould moisture and it will live its best life, reproducing by making spores which float through the air and attach themselves to whatever tickles their fancy like food, wood, paper, fabric, carpet and furniture, amongst many others.
Mould can look very different, depending on its age and type, but typically it is a black or green colour. Other colours it can be are white, orange and brown, and it can also appear in fuzzy patches or dark splotches/shadows.
For all its 'positives', mould can pose a risk to your health because it produces allergens, and sometimes even toxic substances. Touching or breathing in mould spores can cause an allergic reaction, with symptoms ranging from sneezing and a runny nose, to skin rashes and even asthma attacks.
According to medical literature, those most at risk of a reaction are:
- People who have a weakened immune system, such as those having chemotherapy.
- Babies and children.
- The elderly.
- People who have respiratory problems.
- People who suffer from skin issues like eczema.
... which brings me nicely onto the reason for this post. What is desperately sad is the fact that there have been many people who have been misdiagnosed with eczema, when it is actually a reaction to mould, but by the time this has been discovered, they have become dependent on the medication they have used to treat it – enter (T)SW, my old friend.
Then, there are some who will go through (T)SW, give it time, but find they are still experiencing symptoms and start to doubt the process, like anyone would. They then might go back to the medication that was mistakenly prescribed to them in the first place, and mask and bury the real problem even deeper, whilst having all these other health complications from the medication.
The treatment of skin conditions needs to be completely scrapped and before medication is prescribed, first there needs to be an investigation into possible root causes, which would negate the need for medication and the risk of developing a completely preventable iatrogenic condition.
I am now going to hand this post over to four people in our community who have suffered as a result of mould exposure and show exactly why this subject desperately needs more awareness in order to prevent so much needless suffering.
Jody (@livjmac13)
25-34
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1. A brief overview of your skin history and the medication you used to treat it.
Childhood eczema, mild and manageable. I was prescribed Eumovate regularly by my GP and told to use “as and when needed”. Didn’t fully realise this was a steroid until reaching adulthood. In 2020, my skin ‘exploded’ from nowhere with red & purple wheels covering me head to toe. Was diagnosed with Chronic Idiopathic Urticaria and given more steroids - Dermovate, Betnovate/Elcon etc. and steroid bandages applied daily at dermatology. No change. Biopsy taken with little information given about the results. I then was prescribed Omalizumab to self inject every month, did this for 5/6 months with little change/worsening of other symptoms (alopecia/hair loss, extreme weight loss – around 3 stone, joint inflammation & pain).
More steroid dressings administered at hospital. Omalizumab stopped and started Ciclosporin. Used this for 6 months and was taken off it by my derm – skin had improved slightly but other symptoms worsened – this is when I developed an allergy to eggs, dogs & cats. Super reactive skin. Stopped steroids altogether January 2021. Put on Dupixent June 2021, self injecting every 2 weeks, lasted 12 weeks. No change.
I went on holiday for 7 days in August 2021, skin held up relatively well with the odd flare. Going through TSW process at this time. Within 24 hours of returning home, I had a massive flare, bright red and raw head to toe. Swollen eyes, ears, lips. I had always suspected a trigger in my flat, but this confirmed it. I had a cupboard in my bedroom I was convinced had damp & would regularly be covered in mould when weather was bad. Numerous workmen dismissed this.
I was written off by my derm and GP as having ‘mental health issues’ and referred to psychology programmes against my will. I was given UVB treatment that did show some signs of improving my skin but not for long periods.
In November 2021, I had an appointment with an MCAS specialist, Dr Deering. He completed his symptom checklist and said he believed my “beefy score” was an indication of MCAS. He said I must identify triggers and remove them completely. He started me on Ketotifen, Nizatidine & Sodium Cromoglicate (very slowly stepping up dosage gradually over 4 weeks each time). These have greatly improved my health. In January 2022, I moved out of my flat and almost instantly began to recover.
Since, I am aware my previous property has been sold and the home report listed “serious damp work needed in living room and both bedrooms”.
2. What is your experience with mould?
Moving away from my old property where there was damp/mould and concealed black mould has changed my life. Every day I would wake up with a new flare and not know why. I cut out so many things and nothing would ever consistently work. I was so worried as it was such a big step/change to move house. But I honestly believe this is what helped me recover most/fastest.
3. How are you doing now?
I’m still taking each day as it comes, my old childhood eczema flares in the usual places and sometimes I can have bad days but nothing like before. I see a functional health specialist regularly and she’s helped me so much. She is supporting me through the detoxification process. I take medication for my MCAS and this is still a work in progress but seeing lots of benefits and improvements.
4. Tips for anyone who might be suffering from the same issue?
I know that a house move is not always possible and is a massive decision but I never looked back. Charmaine Shepherd at Edinburgh Health Clinic has helped me every step of the way - the only one! I’m so lucky to be in a position where I have been able to get private health appointments. But mostly, the thing that has helped is time to heal myself.
Amanda (@amandapanacea)
35-44
*1. A brief overview of your skin history and the medication you used to treat it.
I had some eczema that started around 11 years old after a year of being sick often and taking lots of antibiotics, but by the time I was 12, it was gone. In college, I had another major flare for almost a year, but after I changed my diet and became interested in health, it went away. I was flare free for over a decade until I got ill with Hepatitis A, then shortly after I was exposed to mold in a waterfront apartment for over a year. During that year, I developed full-body and face skin rashes and was diagnosed with Mast Cell Activation Syndrome. I knew of Topical Steroid Withdrawal because I used to use steroids in childhood, so I avoided them. However, I was not aware oral steroids could cause TSW, and I took 12 days of oral Prednisone by recommendation of a doctor so that I could do an immunotherapy treatment, which sent me into debilitating TSW.
2. What is your experience with mould?
I have been exposed to mold several times in my life, but it wasn't until after I had Hepatitis A did being exposed to mold cause me to develop horrible skin rashes and Mast Cell Activation. Mold is a fat soluble toxin which gets processed by the liver, and if your liver is stressed it can impact this process, causing skin issues.
3. How are you doing now?
It has been a little over 1.5 years since I started TSW, I would say I am about 90% recovered. I no longer limit my diet or take antihistamines.
4. Tips for anyone who might be suffering from the same issue?
Make sure you rule out mold in your home, parasite infections, liver stress, and candida and bacterial overgrowth in the gut. Those are some of the biggest driving physical factors that lead to skin issues. The second biggest reason is nervous system stress. The biggest improvements I made were because of doing trauma work, somatic experiencing techniques, brain retraining, and visualization techniques.
Alice (@alicecathie)
25-34
1. A brief overview of your skin history and the medication you used to treat it.
I've had eczema on and off since birth. My skin basically just reacts to anything. If I’m stressed, for example, I’ll start getting little patches on my hands.
My skin was okay most of my life until about 14, which was when I first stated drinking alcohol. That was when I started consistently using steriods, which would put me in a cycle of drastic ups and downs.
In 2016, I went through TSW, but I don’t think I realised that’s what it was. At the time, I didn’t have the skin community I have now, and I was skeptical about TSW, I thought it was just really bad eczema.
After my experience with mould, I went back to steroids because my skin was unbearable, which lead me to my second round of TSW from 2020 till now.
2. What is your experience with mould?
In 2019, I moved out of my parents house and into a shared house. I remember when I moved in, the skin on my torso flared almost immediately. I wasn’t too worried, as lots of people with skin conditions have flares when they move from dust/stress etc.
Within a few months of living there, however, my skin was completely out of control. I had never experienced flare-ups like it, and nothing seemed to make them go down. I was at a point of wearing wet wraps on my arms all day everyday. I remember feeling embarrassed and confused. Everything seemed to make it worse.
Unfortunately, like most people with eczema have experienced, I went to the doctor and begged for help. I told them this wasn’t normal, this wasn’t how my skin normally acts and I knew something was wrong. I left the doctors with a high strength steriod, and even though I didn’t want to use it, I hadn’t been comfortable in months. I just wanted to sleep.
After a few months, I got conjunctivitis, but my partner at the time didn’t catch it. When I Googled, it said conjunctivitis isn’t contagious if it’s caused by an allergic reaction, the main cause for the reaction was mould…
There had been a few specs of mould above my bed, so I got rid of them with some bleach and moved my bed. When my bed was on the other side of the room, I noticed there was a huge amount of mould on the wall. I had an attic room and was unable to see it before because of the shape of the room.
Something clicked in my brain. I ran and got the bleach and I just KNEW, this is why my body was so upset. When I removed the mould, my skin literally cleared up overnight.
3. How are you doing now?
I’m doing well! I’m still going through TSW but it’s much more manageable than it was last year. Leaving my skin to do it’s own thing was the best thing I ever did.
4. Tips for anyone who might be suffering from the same issue?
Please please please, everyone who has eczema, check for mould in your house. It’s an extremely common allergy for people with skin conditions. If you find it, there are sprays you can use to remove it from bathrooms and walls etc.
Mould is really bad for your health in general. I think people underestimate how bad it can be for you. Keep an eye on the areas that get mouldy and remove it.
If you have a room which is at risk of getting mouldy like an attic room, you can get a special fan fitted which will help.
Jessica (@jessicajeremiahphoto)
35-44
*1. A brief overview of your skin history and the medication you used to treat it.
I developed eczema at 2 months old, and consistently used topical steroids until my 30s. There were times I didn't use them, but always had a tube. When I moved to a new state after getting married, my skin and health really flared up, and at one point I was prescribed 7 different steroids – different ones for my face, body, eye drops, nasal spray, scalp, a tape for stubborn spots, and a steroid injection. Eventually, we moved again and I also removed dairy from my diet and within a few months, I was able to get off all steroids. I was clear for 5 years, until I developed a small rash on my wrist, which was treated with a topical steroid, and within weeks turned into TSW (2015). I attempted a month of stopping cold turkey but was so shocked and horrified that I went back to using the steroid, and attempted to wean off for the next year. That obviously didn't work, so in 2016 when we moved again (my husband is in the military and I often mark time periods by our many moves!) and my skin was so horrible, even with the steroids, I stopped cold turkey again. It was horrific. I was unable to care for myself and my daughter, so my mom flew out to stay with us for a few months. Around that time I discovered Medical Medium and tried that approach for many years with minimal impact.
In 2019, we moved back to the home where we lived when I started TSW, and my skin flared again massively, even though I had been almost fully clear previously, and it was like early TSW all over again for the next few years. In 2021, we found a hidden leak and discovered that there were high levels despite nothing being visible, no known leak, and no mold smell. We moved out for 6 weeks while we remediated, got rid of most of our belongings, and I started working with root cause and functional medicine practitioners to address the damage my body had experienced.
2. What is your experience with mould?
I now know that I have lived in buildings with water damage, and most likely mold, for most of my childhood and adulthood. I'm just now putting the pieces together with how it's impacted my skin and general health. I have always had mysterious symptoms, like PoTS (dizziness, nausea, brain fog, exhaustion, tachycardia, etc), in addition to my skin issues, and migraines.
Most recently, our home was found to have a hidden leak under our shower, and tested very high on an ERMI mold test for water damage/black molds that produce mycotoxins and cause health issues. Mold is often not localized and can spread throughout the home through the HVAC system. In addition to remediating the bathroom, we also got rid of all our belongings that couldn't be effectively cleaned (mycotoxins and spores are very tiny and can embed in porous items), and kept only metal, glass and clothing that could be washed. We cleaned our air vents, installed a whole home air purifier, MERV 13 air filters, did a thorough fogging and wipe down of our entire home, and only brought items back in once they were decontaminated.
I am also completing a supplement protocol to help with mold detox, as well as addressing other factors that contributed to my skin/health issues initially, like parasites and industrial toxins. I am much less restrictive with my diet, and am no longer plant based, but still choose high quality unprocessed foods and avoid gluten. For me, my skin problems were just one manifestation of a deeper root cause.
3. How are you doing now?
I'm doing really well since working with both a functional medicine and a root cause practitioner and addressing mold in our home. My skin is mostly clear and I have also experienced improvement with my other symptoms, like more energy, less anxiety, etc. I'm back to living life and my skin isn't a major issue.
4. Tips for anyone who might be suffering from the same issue?
TSW takes time, absolutely, but I would highly recommend looking into root causes vs. trying every cream and lotion, or spending years waiting for it to go away on it's own. It might be an external symptom of something else going on! It helped me to zoom out and look at my skin as part of the picture of my health as a whole.
***Jessica has also been doing a limbic system/brain retraining program to help deal with the trauma of the mold and (T)SW. More information can be found (here).***
* * *
Thank you so much to Jody, Amanda, Alice and Jessica for being part of this post and for sharing their experiences – you're all amazing <3
If you are concerned about mould exposure and would like to look into this further, whilst there are no tests out there that show when you may have been exposed to mould, your doctor should be able to check for a mould allergy by doing a blood or skin prick test.
There are many ways to kill mould in your home – one of the most common is by using bleach, but popular natural alternatives include baking soda and vinegar.
Because everything in the treatment of skin conditions should be about seeking root causes and prevention, the most common ways to control the spread of mould in your home etc. are:
- Having good ventilation to minimise moisture and prevent mould growth.
- Fixing any leaks and building issues.
- Ensure that you have a good heating/cooling system.
- Make sure there is adequate air circulation around mattresses and furniture etc.
- Keep humidity levels under control. A decent level is between 30% and 60%.
I would like to end by saying again that this post is shared in order to shine a light on a subject which desperately needs light on it in the hopes it can stop people from suffering.
Here's to a future where medical professionals look for answers and not masks.
Sending love and healing, always,
Cara x
Other posts in the series:
Let’s Talk About: TSW & The Genitals (here)
Let’s Talk About: Eczema Herpiticum (here)
Let's Talk About: Protopic (Tacrolimus) (here)
Let's Talk About: Elidel (Pimecrolimus) & Eucrisa (Crisaborole) (here)
Let's Talk About: Oral Steroids (here)
Let's Talk About: The Nipples (here)
Let's Talk About: Pregnancy (here)
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