Recently, I discovered my long term health challenges (fibromyalgia and chronic fatigue syndrome) are due to a condition known as CIRS (Chronic Inflammatory Response Syndrome), caused by mould exposure. Since this diagnosis, my life has been turned upside down, but I have already seen improvements.
Treatment for CIRS is a long term (and expensive) process. It has many aspects and stages, but, in simplified version:
1. The mould toxins have to be removed from the body
2. Exposure to more toxins must be prevented (in buildings or on possessions)
3. The immune system has to be assisted to calm down and regain equilibrium.
4. Other interacting infections have to be treated
I am currently at stage 1 & 2.
People that have the genetic predisposition for CIRS cannot produce antibodies against the mould toxins. Thus they rely on the liver clearing it from the bloodstream and excreting it via the bile. The problem with this is that most of it gets reabsorbed further down the intestine. (This is known as enterohepatic recycling. Whilst it sounds a bit silly and inefficient, it is how the body recycles its bile salts.)
Thus the mainstay of the treatment is a toxin binder called cholestyramine. This powder is taken dissolved in water several times daily. It stays in the gut and binds strongly to the toxins in the bile, so that they are excreted in the faeces. This powder is like the love child of wallpaper glue and cement, in taste, texture, and the effect it has on the gut. (Be warned – increase dietary fibre!)
Many people find the cholestyramine causes intensification of symptoms (especially if they are still in a mouldy environment) so have to be very conservative working up to the full dose. Other binders can be used for severe reactors (eg. chlorella, zeolite, bentonite clay) but they are less effective.
Despite only being able to take a tiny dose, in only 8 weeks of taking binders quite startling changes have occurred.
The Good News:
My fibromyalgic aches and pains are less. There is less tension in my body and my posture is better. Without particularly trying, I have increased in flexibility.
I have finally been able to put on weight. At my bedridden worst, I dropped to 46kg (100 pounds). Replacing the extreme muscle wasting (especially of the upper body) has taken a few years. Suddenly I am now at 54.5kg.
When I am away from the house, my mental alertness, concentration span and intelligence is much better. It feels nice to feel like myself after feeling so hazy with brain fog. (It has allowed me to get this blog back up and running, something I couldn’t manage a few months ago.)
The Bad News:
I am one of the people that had a severe flare up on cholestyramine. I have had to change to milder binders after 4 weeks. I have also needed to do coffee enemas daily, to help flush out the toxic bile.
So I’ve been feeling pretty tired and brain fogged on and off. I am increasingly sensitive to mould, and have reacted to a couple of places I had previously felt OK in. I am reacting more to airborne chemicals (eg. the laundry aisle in the supermarket, perfumes and off-gassing from new plastic)
This sensitisation is common. As the toxins mobilise in the bloodstream, they cause one last stir up of trouble as they go. Typically people on treatment feel much healthier quite quickly once away from mould, but it takes longer for the chemical and mould sensitivity to settle.
The really bad news
I am in a house that has a damp/ mould issue, and now face the monumental challenge of moving when ill. Although I am sleeping on the balcony, I still have to cook and shower indoors, and even this smaller exposure is affecting me. Some belongings, especially unwashable things, have to go. Including, possibly, several thousands’ worth of textbooks – paper is a notorious mould toxin offender. Like others have, I will put some thing into storage to see if I react to them in a couple of months. Fingers crossed.
My next move then will be a mould sabbatical – going inland to dry, clean air away from mouldy house and belongings for a couple of weeks. (I will go into more detail next blog, including links to others that have done this) Many people have improved rapidly on sabbatical. I hope so, the idea of camping amongst all the detoxing is rather daunting!
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?