The only way is up...

Well 3 months into this anti-inflammatory diet, I have to say that I’m charging along. I’ve put on 3 kilos (though am still underweight). I feel much better and have lost the numbness in my left arm which has plagued me for a year.  Who would have thought that cutting out so much food, and eating no fat would help me gain weight??

Anyway yesterday was D Day. I got my results from my lumbar puncture. The fantabulous news is that I do not have a progressive nor deteriorating disease!! The damage to my body has stopped progressing and the inflammation is slowly but surely reducing. Even better news if you ask me.

The bad news is the nerve damage to my hands and feet is permanent. I now need to care my feet as if they are diamonds as the blood supply is severely compromised due to the nerve damage. Not exactly what every dancer wants to hear – but since dancing is so important to me, I have put this high on my self care agenda.

They feel though that my leg damage may be able to be improved. Or if not that I can build up all my other muscles to compensate for their limited use. It also helps that we are in a mold free environment which is giving my body a greater chance of detoxing.

But I feel so happy and positive!! I went home from this appointment on cloud nine, because a) it’s so nice for my body to be co-operating for a change and b) that there is light at the end of this mold saga.

Previous Post 13 September 2010

Is your house killing you???- originally posted 13 September 2010

Is your house killing you?...because it turns out that for the last 8 months our new house has been killing me…literally. As some of you would know, I have been battling unwanted weight loss since we moved into this house. Now I know for some this would be a good thing, but for me it’s been a progressively bad thing.

It started off as losing half a kilo every fortnight. Then I would manage to gain a little, then lose it and some more. Now it has accelerated to half a kilo a week, and the maintenance weight I strive for just gets lower and lower. It doesn’t matter that I currently consume 3000 calories per day, lots of proteins, fats, do zero exercise….the weight just falls off week after week.

I have also suffered ongoing bone numbing fatigue, headaches, numbness in my arms and hands (which has been getting more aggressive), severe postural hypertension including momentary blindness (hence my recent broken nose) and a general fogginess in my thoughts. There are days I feel like I’m swimming under water – slow and sluggish, and other days where I quite literally cant get off the floor.

My local GP’s were at a loss, so I was sent off to a series of specialists, who have also been at a loss. They all agreed that there was something seriously wrong with me, but could only rule out cancer, and problems with my endocrine system to name a few. Finally, someone recommended contacting a mold toxicologist to assess our house.

Little B has also been sick, quite literally, every 8-10 days since March. He, who has never had a cough, has had many coughs plus colds, plus major congestion. He is also always tired (unrelated to the amount of sleep he has had).

When we moved in we discovered the previous owners had hidden a substantial mold problem in two of the bedrooms. We removed all the said walls and ceilings and replaced them with new plasterboard. Had subfloor ventilation put in to dry out under the house as it seemed to be a bit damp. Problem solved or so we thought.  It turns out there is a major mold problem under our house.

The mold is in the bearers, in the earth, and we have water pooling in odd places under the house (not from leaking pipes). Anything we have under the house grew mold but that didn’t seem odd. But now we have mold growing in the house in weird places – smack bang in the middle of a glass window that get’s full sun. Our toilet brush rotted, our washing machine grew horrid black mold on the door seal that wouldn’t come off and microscopic mold was all over my clothes and I was breathing it in (the worst bearer was under my wardrobe).

Our lovely wooden floors are bringing these mold spores in via osmosis. No room is immune.

After speaking to a mold toxicologist, and a building biologist, Little B and I have moved out of the House of B for the time being. I’m currently undergoing round after round of tests to see how much damage this mold has done to my body. You see it turns out that mold can be so toxic that it can induce autoimmune or neurological diseases, damage your lungs, and even in some cases cause permanent damage to your body.

We still don’t know what the future holds for us or this little house.

Mold - 1, The B Family – 0

Previous Post 12 October 2010

Moldy House Update - originally posted 12 October 2010

Well bad news was always in the offing. I’ve been told that I will never be able to live in our little house again. The type of mold there is so endemic and deep rooted, that while it can be mainly removed, it will probably return due to the nature of the block (it’s an aquifer). I also had such a massive exposure to toxic black mold, and such a bad reaction, that I will continue to react in the same way.

Unfortunately, I have had to throw all my clothes away as well as they cannot be cleaned. The type of mold, Stachybotrys, binds to the fibres and is unable to be washed out.

So we look forward. We will fix the house but look for a new House of B in the next 12 months. The Mold may reign supreme, but then again so do we. I now need to focus on getting healthy. They say my physical rehabilitation will take about 12 months and my health will take just as long to recover if not more, so it’s all good timing really.

When you think things are bad,

when you feel sour and blue,

when you start to get mad…

you should do what I do!

Just tell yourself, Duckie,

you’re really quite lucky!

some people are much more…

oh, every so much more…

oh, muchly much-much more

unlucky than you!

- Dr Suess, Did I Ever Tell You How Lucky You Are

There will be more challenges as we get through this. We’ve been told that when we move we have to treat our belongings as if the house burned down. All the furniture will need to be disposed of, plus our clothes and books. If we take it with us, we run the risk of contaminating a new house.

We’ve had time over the last few weeks to reflect on this change, and we are completely at peace with the situation. Can we financially afford to do this? The answer is a big fat resounding NO! Ultimately though the health and survival of our family is more important than any old house. And as the Dr Suess story says, there are worse things that could have happened to us and we are lucky we caught it in time :-)

Well..

I had my sad sack moment (which doesnt suit me) then launched into an offensive against this nasty mold saga. My neurologist recommended I start an ant-inflammatory diet to bring down the inflammation in my body. Interestingly, it is kind of similar to some of the mold recovery diets out there. So I've started it with gusto.

Quite simply it is a vegan diet with a little bit of oily fish. I also have to watch my saturated fat intake (I have to keep it under 10g a day). So I've been eating lots of beans, lentils, veggies (of course), seeds, almonds, some red salmon and ocean trout, as well as taking lots of flax oil, magnesium and vitamin d. I'm also supplementing some B vitamins as recommended by him to help with nerve damage and also since a vegan diet is often deficient in Vitamin B12.

I feel better on this diet. It's not really helping with my numb arms, or leg weakness yet but he says it could take 12 months to feel any difference. I've also stepped up my detoxing baths and am bathing in betonite clay once a week and epsom salts once a week. I've also started using coconut oil as a body moisturiser (with great success actually - it's made some fungal skin spots flare and disappear).

I also think the diet is encouraging a detox because initially I had days of extreme fatigue, headaches and feeling really foggy and unwell. After about 1 week, I felt better. I'm wondering if this is similar to the fungus die-off you see on anti-candida diets?? Hmm only time will tell. And for the first time in like forever I've gained some weight and kept it on for about 2-3 weeks. Fingers crossed...

I'm struggling...

Well after a month of tests, we are kind of back where we started (but worse). I have neurological damage from my mold exposure which is affecting the muscles in my legs - so greater than the initial assessment of "just" CNS system damage. But I will need further invasive testing to see what exactly is wrong and whereabouts in my body is most affected. My neurologist is quite shocked at the extent of the damage and feels its worse than when he first saw me. My blood tests seem to show that my whole body is suffering from inflammation.

And he feels that my body still seems to be either a) deteriorating or b) they didnt realise exactly how much damage their was initially.

Now the irony is I've been coping really well with everything but this new diagnosis has hit me for six. I just cant seem to move past it. I'd even come close to calling it mild depression. Or maybe more emotional numbness. I'm sad that buying something as simple as a house has done this to my body.

I'm angry that I used to be so fit and healthy and now I'm not. But at the same time, I dont care and I want to give up. I want to cry but I cant be bothered. I've abandoned my autumn garden because I quite frankly I simply dont care.

Doctors visits and tests take up way too much time in my life. And I find it sad that my 4 year old takes going to hospitals in his stride. He just asks which hospital or doctor we are seeing and bounces along with life. The whole family spends so much time watching my weight, my health and we had just too much time recently freaking out about serious weight loss, numb arms, rashes and other annoying mold side effects.

So on advice, I am starting to focus more on some self care. All this trekking around for docs, caring for a 4 year old, selling a house etc etc has taken over my life. So my aim for the next month to spend time doing things I like - simple things like reading books, knitting, watching some movies (and old passion I dont get to indulge with a hands on child). I'm hoping I can work my way through this emotional struggle so I can get on with healing my body.

Health Update

Well my latest round of tests did not go as positively as I would have liked. My neurologist has found greater nerve damage from my mold exposure than first thought. I already have peripheral neuropathy (which is basically weakness and sensory changes in my muscles) but this has become quite significant on my left side. I have to put a lot of effort into getting some movements especially out of my left leg.

This in turn has triggered off a whole new series of tests. In amongst the CT scans, MRI's, blood tests and so forth, the greater fear is that I may have some sort of autoimmune disease as the result of this all.

Of course none of this has been helped by my constant exposure to the outside of our house. The good news is we've had a lot of people helping out. The even better news is the house goes on the market next week. The bad news I had to do a lot more than I would have liked, so fingers crossed now I wont have to go near the place again.

So we soldier on - I've been using lots of charcoal soap and rhassoul clay to clear my skin of any mold spores picked up from around the house. I've also been having Epsom Salt baths to help detox my system. My diet isnt as good as I'd like but I'm on an elimination diet at the moment and hopefully I'll be able to bring back in lots of vegies and berries asap.

Buying a new house??

We've started the long process of selling our house and buying a new house. It's a long process because we have been renovating the moldy house and getting it treated for sale, and then we will obviously have to take out time buying the next one so we avoid mold.

On the weekend, I went to a few open for inspections mainly to see whether I can detect if a house has mold. When we do find a house we like we will be getting mold air testing done to be sure. As well as a building report to check for water intrusion. Mr B has been really concerned that we could inadvertently end up in this predicament again (which would prove too costly).

So around I went. I went to 3 inspections. First one, I was fine - the house was good. I even looked under the house and the ground was dry. But then came the next two. The 2nd house had no visible mold but I knew it was there. Within 10 minutes I started to wheeze, my chest was contricted and my throat burned. I had to reach pretty quickly for Ventolin and antihistamines. The 3rd house - what can I say. It had mold - you could smell it, you could see it - all over one bedroom ceiling. I got out of there pretty quick smart. Again came the meds.

It took me the rest of the day to get over this exposure. And I use the words get over fairly loosely. I still feel fairly crappy but that's for another reason.

On top of this, both yesterday and today I've been around the outside of our moldy house. We simply cannot financially afford for to get other people in for everything. I've been painting our fence and balustrading on the stairs to our front door. And bam - I'm wheezy. Some of our relatives have offered to help and even though I feel guilty, I'm going to have to take them up on it. I've come to realisation that I cant fight through this on going poisoning.

Poor little kitties :-(

As I mentioned in our story, both our cats have been unwell since we moved into this house.

Unfortunately when Little B and I moved out, we had to leave the cats behind. They have been well cared for, fed and looked after by Mr B during that time but recently our youngest cat began having massive mood changes and seemed generally unwell.

We moved her up to Granny B's (which is a juggle as her cat is not cat friendly). Our poor little kitty H was a bit of a mess. Off her food, lethargic and after a few days, we discovered she was bleeding from her bowels. Turns out the mold had colonised her bowel and her skin. With our vets help, we treated her and after 3 weeks she is on the improve.

Problem sorted I hear you say?? Well today I booked our other cat M in for grooming so she could make the move up here (she is half Persian). The vet looked her over and suddenly it was emergency stations 'stat'. Now it turns out she is sick as well and she has an autoimmune disease brought on by "exposure to a toxic environment" which in turn is impacting on her heart. Turns out the vomiting they assured us wasnt serious and was caused by furballs in a long haired cat, is actually very serious.

All I can say is that this afternoon I am both heart broken and angry. Heart broken because our poor little kitties are now bearing the brunt of this house and angry because the vets didnt take us seriously when we brought the cats in during the last 12 months.

Hindsight

Hindsight is a wonderful thing. We made so many misjudgements and mistakes during this mold journey. On retrospect, by ripping out the walls we probably blew mold spores throughout the house. Not helped by the fact it was a hot summer and used fans in each bedroom / room.

We also doubted ourselves too much. Writing down our story it's so obvious that it was / is mold. But when you are living it day to day, with doctors constantly saying its not possible, it doesnt seem so clear. I think Andrea Fabry makes the best point ever when she says "treat mold as the problem until proven otherwise".

I could kick myself at the moment because we doubted ourselves. 4 months later after moving out, I'm back at square one health wise (not quite), but at least I know what to do :-)

Go with your gut instinct!! If you think it's mold it probably is!!

Our Story

In December 2009, we moved house. The first day we moved in we discovered that the previous owners had been hiding mold in the wardrobe roof of the master bedroom and in the cupboard of a back bedroom. These areas had been hidden by a box and a chest of drawers.

The ceiling in the master bedroom wardrobe was completely black with mold and so were parts of the wall inside. We at least had enough intelligence not to move into the room. On removing some wood panelling on one wall, we discovered huge amounts of black mold. Mr B proceeded to remove all the walls and part of the ceiling and replaced it all with fresh plasterboard. We then moved into the room.

In the back bedroom we paint the wall in the cupboard with an eco fungicide, followed by liberally spraying vinegar and letting it dry. Nothing is put in this room though as it smells damp and dank. It's dubbed by Little B as "the smelly room".

In March, we experience a massive hail storm during which our study leaks water from the window architrave - the water pours in onto the floor. The ceiling gets wet in the master bedroom and water runs down one wall. The insurance company takes until June to repair the ceiling in the master bedroom but only does a very small section. The assessors assess the study as having no damage.

3 weeks after moving, I begin to lose weight. Up until March, it is 0.5kg every 3 weeks. This then progresses to every 2 weeks. No matter what I eat, it keeps happening. By July, it's 0.5kg per week. I can occasionally gain 0.5kg but this is often followed by a 1kg weight loss the week after.


April 2010
From April, Little B is sick literally every 7-8 days. The coughs, colds and fevers are endless. For one month he catches back to back gastros. His cough is horrible and he has permanent dark circles under his eyes.

Mr B suffers from a constant massive fungal infection on his leg from the moment we move into the house. Eventually the doctors move to massive doses of a medication that can damage the liver. It only holds the infection at bay, if he stops the meds it comes back with reinforcements. He suffers muscle wastage and atrophy in that leg from the infection (not the meds).

Our two inside house cats constantly vomit. Sometimes it feels like every day. They have never done this prior to living in this house (they are 7 years and 8 years respectively).

May 2010
Around May, I start to suffer from severe postural hypertension on waking in the morning. I'm blind for 3-4 seconds. I break my nose in late May as the blindness is so severe and disorienting that I walk face first into a door frame.


July 2010
In July, my hands start to go numb periodically. Over the next few months this spreads right up my arms to my shoulders. It then starts to coincide with my morning blindness. Then the postural hypertension starts to occur anytime I change position (i.e. from sitting to standing).

During this time, I am in and out of the doctors like revolving door. No-one knows what is wrong. My weight loss continues. I'm referred to an endocrinologist and he is completely stumped. In his words "visually I can see you are very sick, but on paper you look healthy". I'm warned that I am 0.5kg away from potential hospitalisation and then sent on my merry way.

Then the fatigue sets in. I'm constantly exhausted. I have times when I quite literally dont have the energy to open my eyelids and I cant stand up for long periods of time. I can no longer lift my 3 year old son. My thinking becomes really foggy - I just cant think straight. My memory is shot - I cant remember anything to save myself.

I start seeing a dietitian who is completely freaked out. I'm consuming 3000 calories a day and as much fat as I want but I'm losing weight. I cant stay above 46kg anymore. She recommends I start physical rehab to stop the increased muscle wastage.


September 2010
By this time, both Mr B & I are convinced its mold. Our washing machine grew mold inside it, our toilet brush rotted, there is black mold growing in the middle of a window in full sun. My clothes smell like old granny op shop.

So I move out to my mum's (Granny B) but take my clothes with me. I dont get better. I read that you cannot wash mold out of clothes. We throw my entire wardrobe out plus anything that came from the house. And my numbness, insomnia and fatigue start to go away.

I start physical rehab. On my first assessment, the rehab specialist expresses shock. In his opinion I need to see a neurologist quick smart as I'm showing signs of damage in my central nervous system. He finds that my body is like a moth eaten dress - I am completely missing muscles in some areas, and weak in odd places. My lower body is the worst.

So off to the neurologist who can only say there is something seriously wrong with me but he doesnt know what. He doesnt think its neurological and refers me on. But whilst knowing nothing about mold, he tells me that the only way I will know if it's the house is if I return / re-enter the environment.


November 2010
Two months after leaving, I re-enter the house. I stand for 4 minutes inside with my heels resting on the architraves of our front door. The effect is instant - I have progressive difficulty with breathing which is only rectified by antihistamines and asthma inhalers. My numbness and postural hypertension return that evening. I take Dr Richie Shoemaker's online VCS test that night. I test positive for biotoxin exposure - sort of in the middle range. I am so happy to know it's the house :-)


December 2010
6 weeks later I see my next specialist who specialises in environmental toxins. She tells me "we were born into moldy caves and that there's no way its mold". She convinces me that my reaction in November was a panic attack and that she believes I have a food allergy. This appointment last for 2.5 hours and ends with recommendations for tests. We start to doubt ourselves and the idea its mold.

During a holiday, I begin to suspect that I have a nut allergy. After eating a muesli bar with hazlenuts & pecans my tongue swells and burns. After eating some sushi with sesame seeds my throat closes over and only antihistamines and asthma meds keeps this escalating further. I take nuts and traces of nuts out of my diet and gain 1kg for the first time in months.

We make the foolish assumption from this and the environmental specialist that it must have been food allergy all along.

January 2011
6 weeks after seeing the enviro doctor, I again re-enter the house. Within 24 hours, my arms are numb but I continue to go in and out of the house for the next 3 days. My postural hypertension returns to the extent that I physically fall over every morning. My thinking becomes foggy, I have trouble with language and cant remember simple words, I have constant headaches.

I take another VCS test and my reading is almost off the charts. I have had a massive biotoxin exposure...it IS the mold in our house...talk about a blinding flash of the obvious!!