Is your ME/CFS or Fibromyalgia Caused by Mould?

I recently discovered my ME/CFS and fibromyalgia is in fact CIRS – Chronic Inflammatory Response Syndrome. Aka Mould Illness. It turns out it’s a very common underlying cause for both fibro and CFS.

Other conditions (eg. POTS, Multiple Chemical Sensitivity and Autoimmune Hypothyroidism) have also turned out to be CIRS cases.

So for many of us with Invisible Diseases, this is the eureka we’ve spent years waiting for. An actual cause, quantifiable tests, an established treatment plan, and the likelihood of great improvement

Mould exposure signs

Like many, I had theories about mould connection for years, but doctors had brushed it off.

My 3 severe long term relapses happened shortly after moving into rentals with roof leaks. I also noticed acute reactions (head spins, low blood pressure, brain fog, fatigue) after entering places with that musty damp smell. Sometimes partial or full seizures. The subsequent few days I would have a flare up of exhaustion and fibromyalgic pain.

Other peoples’ acute mould hits have different signs. A depressive mood drop, sudden irritability or anxiety. Gut paresis (loss of gut motility). Rashes, itches and skin flushing.

The traditional medical views about mould is that it can only cause respiratory problems, allergies or colonise within the body. CIRS is more recently discovered and still struggling for acceptance in mainstream medicine, especially here in Australia.

The science of CIRS and the Lyme Disease connection

CIRS is often referred to as mould illness, as this is a common cause. However, CIRS can also be due to other biotoxins, such as those from Lyme Disease (Borrelia spp) and algal blooms. It is sometimes known as biotoxin illness. In Lyme patients that don’t respond well to Lyme treatment, there often is a mould sensitivity as well. It is likely other causes of CIRS will become identified with time.

About 25% of the population have genes which renders them unable to break down these toxins. These are the HLA Human Leukocyte Antigens – they are immune cell receptors that recognise invaders, and an important first line of defense known as the innate immune system. Thus the toxins stay in the body, wreaking havoc on the immune system. It turns out that many people with severe chronic illnesses (90-95% according to some doctors) have these genotypes.

Illness may persist long after the patient has left the mouldy environment, so the mould connection may not always be obvious. The body normally self regulates and switches off its immune response once a threat has gone. This does not happen in CIRS. Once the inflammation gets to a certain level, it becomes self-perpetuating. Although mould toxins have direct effects, it’s in fact the overzealous immune response to them, interfering with many other body systems that cause many of the symptoms of CIRS.

The problem is caused by the toxins, the spores and metabolic wastes the moulds produce. These are such tiny molecules that just the vibrations and air movement caused by everyday living is enough to aerosolise them, and they remain suspended in air for hours. They coat the surfaces of the building and all the possessions within it. Hence even if the mould problem is in one room at one end of your house, or hidden within walls or attic spaces, you will be inhaling these toxins anywhere in the house. This is the most common reason why people with mould illness do not respond to treatment after moving away from mould, having brought toxins with them on their possessions.

Testing for CIRS
There are specific diagnostic tests for CIRS, not yet routinely performed by most practitioners. These include blood tests for specific immune system markers (Human Leukocyte Antigen HLA DQ-DR for the curious). and an analysis of a brain MRI known as Neuroquant. The patient’s history, clinical symptoms and the HLA gene markers are all part of establishing diagnosis of CIRS. It is extremely important to test the environment for mould levels.

cTreatment & Plan
I will go into specific details next post.
I am in the early stages of treatment and have already made progress. However, testing of my home and possessions have yielded dangerous amounts of many mould species. Over the next few weeks I will be packing up and going on mould sabbatical, away from my possessions and pollution (to which I am becoming increasingly sensitive to), traveling through the outback.

Online resources for mould illness and mould literate practitioners.

http://www.survivingmold.com/ The site of Dr Ritchie Shoemaker, the US physician who made CIRS widely known and established the specific treatment protocol. He has trained other practitioners in the treatment protocol and there are links on the site.

http://www.toxic-mould-support-australia.org/ Australian site run by mouldies. Great knowledge resource. There is also a facebook group by the same name.

paradigmchange.me/ Website by Lisa Petrison and Erik Johnson. They both have been affected by mould for many years, first diagnosed as CFS/ME. They are both veterans of the mould community and host/ are very active in several online support groups. There is a very helpful PDF book A Beginner’s Guide to Mold Avoidance that can be downloaded for free.

biotoxinjourney.com A comprehensive website by a patient. Goes deeply into the underlying theory, testing and treatment of concurrent health issues.

‘Moldy’, the Documentary directed by Dave Asprey of Bulletproof, who himself recovered from mould illness. He also has several blog articles and podcasts on the Bulletproof website about mould bulletproof.com

You can watch the full movie for free below 🙂