I first learned the link between chronic fatigue syndrome and mould last year. It was about 12 months into a severe, and until then, unexplainable relapse. I was fortunate to have one of the few mould literate physicians in Australia practising nearby, and have been on treatment for over 6 months now, on the Shoemaker protocol. Treating CIRS (mould illness) is serious business, and takes most of the day’s energy. It has been a busy, expensive and emotionally challenging. But it is paying off.
Symptoms
Brain fog, concentration span and co-ordination have all gradually improved. On good days, I am able to hold fairly technical conversations and read science articles. My creativity and sense of humour is re-emerging. I can manage short walks most days.
Itchiness, tingles, rashes, low blood pressure, dizziness, sniffles – the histamine-based symptoms are much reduced. I still get a milder version within a few minutes if I go into buildings with mould (not a bad thing, it’s a good warning system).
Exhaustion and fibromyalgic pain – this has been gradually improving. The bad days are still a case of panadeine, hot wheat bags and bed, but there have been more good days.
Healing crashes My system is on a detox cycle – a few good days, then a few really tough detox days – sore muscles, tension headaches, spine and joints popping in and out. This bodily cleanup cycle is pretty common in people once they leave a mouldy environment, and is not a relapse.
Treatment
1. Getting away from mould and mould affected possessions.
Finding a suitable house took months. In the meantime, I slept on the balcony in good weather, and spent nearly a month camping near the ocean. I felt better and more alert away from the house. I looked at about 40 places, and about 20 of those had signs of water damage or I reacted to them.
Clues of water damage zooming in on online rental photos revealed signs which saved a lot of time: stains on floors and ceilings, reflections showing newly painted patches (especially in bathrooms – very suspicious), buckling along skirting boards, and rising damp/ mildew on outside photos.
In the end I concentrated on newly built dwellings.
The ERMI mould test of the new place have come up as acceptably low. The ERMI (Environmental Relative Mouldiness Index) is DNA based test using dust samples that you take yourself and send off.
I only brought a few items of furniture that were remediable into the new place.
2. Diet I was already on a gluten free, unprocessed, FODMAP free, low carbohydrate diet, so the only change for me was to cut out all of the carbohydrate amylose (basically bananas and root vegetables).
3. Cholestyramine Oral mould toxin binder. For those of us that have been very ill for an extended period, generally one has to go gently with this drug. I found I can only take 2-3g once daily.
4. Detoxing Magnesium chloride/bicarb baths a couple of times a week, and (when I have energy), 20 min in a sauna twice a week. The dreaded coffee enemas have still been a requirement.
5. Treatment for MARCONS.
Multiply Resistant Coagulase Negative Staphylococci are bacteria that colonise the back of the oro-nasal cavity. They are largely non-clinical in terms of symptoms, but decrease MSH (melatonin stimulating hormone). MSH is one of the master immune regulators, and often low in patients with chronic illness.
Being antibiotic resistant and living in biofilms means these bacteria are hard to eradicate, and the nasal spray treatment typically lasts for several months. As I had an allergic reaction to EDTA, the best biofilm buster, I am using a colloidal silver spray instead.
6. Hormones I had the low testosterone, high oestrogen pattern is common in chronically ill patients of both genders. I have just started on bioidentical progesterone cream for this.
7. Parasites Pretty much all chronic illness patients will have gut parasites. This is not a third world problem. I am on a second course of herbal parasite treatments, and so far have shed dead liver flukes and various species of nematodes.
The next stage:
VIP nasal spray: The next stage of treatment is the VIP (vasoactive intestinal polypeptide), working up to several sprays a day. This is another important immune regulator, and helps the nervous system to repair the damage caused by mould toxins. You have to be out of mould exposure, or VIP can make you worse.
You can find Von Danse on Instagram @theTangledPath
This blog is for educational purposes only and not meant as a substitute for medical care.
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