It has been just over a year since discovering I had CIRS (Chronic Inflammatory Response Syndrome) and starting on the Shoemaker mould illness protocol. Long term exposure to hidden mould was a major factor behind my fibromyalgia, chronic fatigue syndrome and a host of related health issues.
Healthy housing
I have been in a mould-free house about eight months. Finding one on a low budget in a subtropical climate took months. In the end the compromise was to move into a newly built house. It had a safe mould level on the HERSTMI test, but the trade off was the chemical sensitivity effect of off-gassing from new paints, carpets, chipboard etc. It was tolerable – just. Fans were on and windows were open 24/7. (Due to the insane expense of my treatment and moving, we haven’t bought an air filter, but that would be an obvious aid in this circumstance.)
The house is half empty as so much got thrown out to avoid toxin contamination from previous houses. The spacious minimalist look makes it much easier to keep the place clean and dust-free, vital for mouldies.
Bringing in contaminated possessions is the most common reason really sick people don’t get much better after leaving mouldy houses.
Moving house and taking cholestyramine is not enough for chronically ill people. It can be sufficient for those that don’t have mould prone genetics with a low grade exposure. It’s common to have members of the same family falling into both camps, which can cause great conflict over getting rid of beloved possessions. The sentimental/ emotional cost of mould is as heavy a hit as the finances.
Current treatment
I am still on a reduced dose of the mycotoxin binder cholestyramine twice daily.
I have also been taking VIP nasal spray for several months, slowly increasing the concentration. (VIP – Vasoactive Intestinal Polypeptide is a fundamental chemical in the regulation of the immune system, and is generally very low in chronically ill and autoimmune patients.)
Follow up blood tests are pending. Due to cost issues, the treatment time scale has had to be stretched out.
I still do saunas and detox baths regularly, am taking probiotics, vitamin supplements and a heavy metal binder.
The million dollar question: was it all worth it health wise?
For anyone caught up in toxic mould nightmares, I can tell you, YES! It gets better.
I am at that space where healthy people would still write me off as a “person on disability wasting taxpayer’s money”, but to someone who lost function in every body system, I am celebrating small victories.
My fibromyalgic pain is much less. Tension headaches are much less frequent, and I haven’t had a full blown migraine in ages.
Gut problems are 95% improved – no 2am cramps! Gut motility is near normal. I am still on the restricted diet mentioned in previous posts. I can go longer between meals without blood sugar crashes.
My body temperature is up to normal. Like many, my temperature averaged 1-1.5 c below what it should be. This makes the metabolism and immune system much less effective. I have also regained my febrile response (having a fever as a response to infection), also suppressed in many patients
Alopecia – My hair is growing back, albeit still thinner than usual, and brittle.
POTS (Postural Orthostatic Tachycardia Syndrome) is almost completely gone. The last two doctor visits, my resting blood pressure was normal instead of precipitously low. I do still have a higher than average resting heart rate. No dizzy spells in months.
Energy levels and concentration span are still very limiting. Tiredness is still present, and sometimes I still get that been-hit-by-a-truck feeling. It varies depending on exposure to sensitivities and whether or not my body is in a cycle of detoxing.
It is not realistic to expect a quick cure with long term illness. All the secondary problems that came to the after party and helped trash the hotel room (me) have to be treated. eg. Parasites, accumulations of heavy metals, imbalanced gut microflora, nutritional deficiencies.
Further unmasking to sensitivities
As my background level of inflammation and reactivity decreased, other problems became apparent. I am more chemically and EMF sensitive than I previously realised. I’ve had to sometimes use a vogmask to shop and there are more places I simply cannot go. I get hit by the neighbours’ perfumes, aftershave and laundry powder fumes from halfway down the street.
(EMFs = Electro-magnetic fields, from mobile phones, wifi , household wiring and appliances).
The mould – chemical – EMF sensitivity trifecta seems almost universal in folks with long term CIRS.
The good news is with strict avoidance, and detoxification, the sensitivity can gradually lessen. I will discuss these in more detail in a separate blog post.
Nature as medicine – the outdoor effect
Between mouldy air con, chemicals and EMFs, the contrast between most buildings and good outdoor air is astonishing.
It’s like having lots of instant mini-sabbaticals. In fact I have done some fairly decent walks, on days I felt weak, dizzy and exhausted indoors. I always feel better and more productive for several hours afterwards. Sitting in the park at the end of the street on quiet days to watch the sunset has become a ritual.
Plot twist: more mould!
We have had a shower leak the real estate ignored for months. We are now embroiled in a legal battle with the real estate as they want to do a cheap cover-up job without allowing things to dry properly. A health and long term property damage time bomb.
You can find Von Danse on Instagram @theTangledPath
This blog is for educational purposes only and not meant as a substitute for medical care.
Your thoughts?