My visit to Toxocolgist

Last week I finally got to see the top toxicologist at Kaiser Dr. Washington.  I’ve been waiting three months for this appointment.  We spoke on the phone a while back and he offered to see me, but was pretty clear that there really is no treatment for mold sickness.  I kept the appointment anyway in the hopes that he would write me an outside referral to go see a Mold/MCS doctor.  How Kaiser works is this….if they are unable to provide needed treatment they will write a referral and then your treatment will be covered, less your co pay of course.  Since Kaiser doesn‘t have an MCS doctor (yet) I wanted to give it my best shot.

I drove down to L.A. with my expectations pretty low because I didn’t know if he would even believe in MCS.  Well he does and was actually very knowledgeable.  I told him my story, he reviewed my mold testing reports (on the house) and commented that 200,000 spores is a “big number“.  He said that he had no doubt that all my symptoms were from the exposure……….all very classic mold.  Ugh….EVERYONE should know this since some of us are genetically predisposed to become very ill from mold exposure and it is estimated that as many as 25% of homes have a toxic mold problem!!!. If I’d only known that my bazaar set of symptoms…..well anyway…

Regarding the MCS; he explained that there are 2 different schools of thought: A) that it is a severe physical reaction to trace amounts of toxin based on the theory that the body has exceeded it’s ability to rid itself (of toxins) due to excessive exposure…..and/or theory B) it is a conditioned response developing with ptsd that can FEEL very real.  He then explained that he is a subscriber of theory B…..BUT if/when they prove theory A he will change his mind.

He then said that it most likely falls somewhere in the middle. Whatever the cause…..it sounds like he sees a lot of MCS cases so he wrote me the referral and wished me the best.  This is huge for me.  I can now see a Mold/MCS doctor with insurance coverage !!

Another cool thing; he wants to oversee the detox protocol (great) as he warned me that some mold doctors can detox too fast and detox out things that the body actually needs…eesh.  I've heard this warning from other Canaries....so I’m ALL for having him as an advisor.  He wants to follow up with me in four months….so if it helps he can refer other MCS sufferers.

I have complete respect for this doctor and I understand his stance as a western MD and am grateful for the chance to work with a Mold/MCS specialist.
More to come…..

Safe Housing

Once you develop MCS, housing can become very complicated.

I have a beautiful home that was successfully rid of mold but I can’t live there.  The drywall and paint can take up to a year and a half (some people say longer) to totally off gas the Volatile Organic Compounds (VOC‘s) plus I had installed new laminate flooring that will continue to off gas for up to a year, maybe more.  All the new purchases, furniture, couches, mattress, bedding, clothes etc..………THOSE things I could have done something about, but not the repair work and unfortunately I can‘t afford to wait it out…..especially now that I‘m not working.

If I’d known about the possibility of MCS I would have installed tile, and had the repairmen use Low or No VOC materials …….or HECK, I would have just left the damn hole in the wall open….at least I’d be able to live in my own home.

I’m actually one of the lucky few who HAD mold coverage so I was able to have the mold properly removed.  Most insurance companies have (quietly) dropped mold from their policies in recent years and many policy holders learn the hard way that they are not covered.  Unless they have a ton of money, because it’s expensive to have mold properly removed………..many are forced to abandon their home………..and then they can’t even sell it if they haven’t gotten rid of the mold.  Believe me I’m counting my blessings on this one!

You’ll hear me use the term *safe housing* and what that means to Canaries is………..mold free, fragrance free, no pesticides and no recent repairs….recent being a subjective word.

There are several sites posting ads for “mscsafehousing” but sadly there is a glut of people in search and so few homes available…………most of which are unaffordable and would take you geographically away from everyone you know anyway
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The house I rented in the desert wasn’t working so I’m back at Marks…in San Luis Obispo.  It had been painted 6 months ago and I was hoping it would be ok…but not so much.  And the isolation…..Not so good for me.

So the search continues.

Multiple Chemical Sensitivity (MCS)

It is common to develop MCS as a result of mould exposure or as a result of ANY toxic exposure for that matter.  On top of the devastating and paralyzing effects this can have on your life it is also one of the most difficult things for some people to understand or believe.  Most simply can’t/don’t believe the severity of your reactions and think we‘re being fanatic, paranoid or over dramatizing an allergic reaction.  Depending on genetic factors, liver function but mostly the level of toxic exposures, one can develop this condition.  As the body becomes more and more toxic it looses the ability to rid the toxins, these then get stored in muscles, fat tissue and organs….and the body goes into toxic overload….. then any trace amount of poison will make you very sick.

It seems like the perfect recipe for disaster is often long term low level exposure to toxins (in my case mould) combined with prolonged stress, physical or emotional.  Then if you add myriad medications to the mix…..that will often flip the switch and result in MCS.

People with MCS call themselves Canaries…as in the proverbal Canary in the Coal Mine……….to serve as a warning to others.  Many believe that we are only the beginning as more and more people are developing this condition every day due to our toxic times combined with modern day stress, one of the most toxic things that can happen to the body.  The human body is simply not equipped to process out all the toxins that are a part of our daily lives especially if you live or work in a moldy environment, work with paints or other chemicals and take medications.

We’ve been lulled into a false sense of security when it comes to our toxic world…..Yes we have come very far in regards to cleaning up air quality….with auto emission controls and regulating industrial pollutants, overall the air we breathe is much better.  But in other ways we’ve gotten worse and most people are unaware of this….concerning the products we put in and on our bodies.  Clothes we buy are literally sprayed with pesticides and it can take 5-7 washes to get it all out.  In the meantime we are bathing our skin in these poisons all day long.  Unless you buy all organic, the food we eat is full of pesticides too…you can wash that apple all day but the poison is INSIDE the apple.  Fragrances are more poisonous then ever with the new ad campaign claims of “New Longer Lasting Scent”.

People have been sick from mold since the beginning of time but These times are very different.

I’ll try to explain in my own words what MCS is and how it effects my life.

First off this is not simply an allergic reaction.  The symptoms that I experience which are pretty common with MCS are….headache with a dizzy spaced out feeling.  Sometimes I get confused and feel foggy in the head.  Depending on how long the exposure is…..it can take hours or up to a full day and a half to recover if I don’t re expose myself again  What should be a normal outing usually turns into a tearful dash to my car if anyone is wearing fragrance, has used dryer sheets (the WORST offender of all) or smells like cigarettes.  Paint fumes, formaldehyde, pesticides, plastic or any kind of glue is big trouble as well so that makes most stores off limits.

Housing can become a HUGE problem since any place that’s been recently renovated, painted or has new carpet will only make you sicker and the search for *safe housing* can become a hopeless mission.  Sadly many end up living in their cars or tents.

Someone with MCS told me he feels like an alien on his own planet.  I feel like a leper (in reverse) or like a ghost floating around unable to make contact with the real world.  It seems like there is no place on this planet for me.

The isolation is unbearable. If you know someone who says that they have this condition…..Believe them.

My Letter to Oprah

Dear Oprah,

I’d like to bring to your attention a growing population of homeless in the US that are being largely ignored due to unawareness.

We are the environmentally injured with a condition call Multiple Chemical Sensitivities (MCS).  We are called Canaries and due to total toxic overload the body becomes unable to filter out trace amounts of toxins and life become difficult to impossible.  Depending on the level of severity some become completely disabled and are unable to work.  Most can not live in their own homes due to intolerance and move from house to house until their savings dry up and many end up living in their cars or tents.  This is a HUGE problem and no one is listening…or believing.

I was injured by toxic mold in my home.  As a result I developed MCS. I was unable to live in my home after the mold abatement and repair work due to my new hypersensitivities.  Any trace amount of exposure renders me unable to function with severe headache, dizziness and head fog, typical for Canaries.  Work became impossible and now simply going to the grocery store is becoming impossible.  In just three short months my life has changed so much. I lived in a beautiful town home and had a meaningful job that I loved.  Since then I’ve moved several times and stayed in places that made me sicker and as I watch my saving dwindle I fight to extend my disability.

People think we are freaks or fanatics and don’t believe how sick we are but this is real.  This is the most isolating condition as being near anyone who is wearing fragrance will set off symptoms so you learn quickly to avoid ALL people.  It is very sad.  My only relationships now are on the phone or internet.

There are literally thousands of folks that are in constant search for safe housing like me.  Intelligent, professional creative wonderful people with much to offer the world living in their cars.  Safe housing means no mould, no recent repairs or renovations with high voc materials and many other requirements depending on ones level of sensitivity.  The most important treatment for MCS is to live in a non toxic environment.  This is the only way we can thrive but so few are able to attain this.

There are many trying to organize communities of mcs safe housing but no one has gotten very far because most Canaries are unemployed and have little resources.

If you are interested in learning more I’d be happy to talk with you. We really need help.

Sincerely
Lorraine Arsenault

My Mold Story

Up until August the symptoms that I had been struggling with, and somewhat managing were; headaches, head fog, breathing difficulties (unable to get a full breath), constant scalp tingling, daily migraines, nausea, feeling spacey/detached, and severe itchy skin.  Every morning I woke up feeling like I was coming off of some weird drug, like anesthesia.  I would stumble out of bed.  This feeling would usually wear off by mid morning except on the weekends it never went away.  My right ear was sensitive to certain sounds, one of the main reasons I’d become a recluse.  Each morning for the first few hours I would clear freakish amounts of mucus from my sinuses.  This increased so gradually that I became conditioned and sadly didn’t give this the attention I wish I had.  Because this was a symptom that possibly would have put me on the path of discovery sooner.  After countless visits to Kaiser, I eventually I gave up trying to seek answers from doctors.  Plus any medicines given only made me feel worse.  My dog Maxine was also having weird breathing problems too.  She would often hyperventilate and the vet had no idea why.

These symptoms would wax and wane….common with mold because the spores can go dormant and then when disturbed or moisture conditions become just right, they again release toxins in the air.  Because of this pattern I thought I was going crazy and I‘m sure others did too.

When my symptoms were bad I’d simple tell people…”my migraines are back” referring to all the above rather than give detail.  As I became sicker, I left the house less frequently so a vicious cycle developed.  The more I stayed home the sicker I became.

It never occurred to me that my house could be making me sick.  And even later on when others began to make the connection, I dismissed the idea.  It sounded so far fetched.  Like most people, I thought that mold could only cause allergic/respiratory type symptoms.  I had no idea that it could cause neurological symptoms and damage the central nervous system.

Timeline of Events

In August I took some vacation time and scheduled to have the carpets cleaned, one of the worst things you can do if you have mold in your carpet……

By 1:00pm I am so overcome with fatigue and head fog that I spend the remainder of the week on the couch.  I can’t function.  As I walk through the house I find that I have to steady my self by holding onto the walls and countertops.  I am dizzy all the time.  From this point on I am unable to listen to music.  It hurts my ears and seems to confuse my brain.  It takes every ounce of fortitude I can muster to pull myself together the following Monday and go back to work.  My symptoms lessen.

In September I take another vacation week and have a repeat of what happened in August.  But now the head fog is so severe I fear that I’m actually blacking out so I avoid driving all together and again stay home.  By this time I am beginning to notice problems with my coordination and reaction time.

Soon after is a pivotal moment for me.  I am watching TV and see a commercial for Clairton where they show a woman walking through the park, everything is foggy and blurry until she takes the Clairton and the fog clears up.  I never knew allergies could cause head fog so I decide to see an allergist.  Could allergies be playing a role? 

In the meantime my friend Mark asks me if I’d ever had any water damage in my home and I suddenly connect the onset of my symptoms to weeks after my toilet overflowed soaking my bedroom carpet.  I decide to hire a environmental hygienist to test for mold.

I go see the allergist and he performs a scratch test.  I show a high reaction to 3 out of 4 molds and dust mites.  He doesn’t trust the results because my skin reacted to ALL the panels so he orders blood work but recommends that I buy a new mattress and replace the carpet in my bedroom with wood or tile.  He tells me that he’s not sure if I have a true allergy to mold, but my body is certainly reacting to it.  He also tells me that you don’t have to be allergic to mold to get sick from it.  He thinks it’s a good idea to have my house tested.

The environmental hygienist is scheduled for the following week and in the meantime I decide to be proactive.  I hire a cleaning crew to deep clean my house.  I give them a baseball bat and instruct them to “beat the crap” out of my mattress and all porous furniture.  I return home that night and by midnight I am gasping for breath, my skull feels like it is cracking open from the inside so I call a neighbor and Maxine and I go spend the night at her house.  We stay five nights and the headache lessens.

I buy five hepa air purifiers and have them stationed around the house running 24/7.  I still don’t know if it’s dust mites, mold allergy or a toxic mold intrusion to my home but I’m covering all my bases.

The day before the inspector is scheduled to perform his mold testing, Mark is in town and offers to pull my bedroom carpet.  He pulls the carpet back and we see no sign of mold but I’m still concerned about my possible allergies so I think it’s a great idea to rip it out anyway.  That night I am unable to stay in the house  The carpet dust covered every surface and I can’t breathe so Mark stays at my house cleaning all night and I go to sleep at my cousins.  I return home the next day and continue dusting and cleaning.

The inspector arrives mid day and I show him where the flood was.  He inspects the discarded bedroom carpet that is rolled up in the garage and pulls back the carpet in the other two rooms.  He sees no sign of black mold but explains that he wants to go ahead and takes samples anyway because there are some very toxic molds that are invisible and odorless.  He takes indoor and outdoor air samples.  He sees no indication of mold based on visual inspection but takes the samples to the lab anyway…..just to be safe.

That night I am in so much head pain and am gasping for breath.  I think I might actually die so I fill 3 water dishes for Maxine and put plenty of food in her dish in case no one finds me for several days.  I am NOT going to the hospital for the breathing problem because they have already diagnosed that as anxiety, which I knew it wasn't..........and I know they can not help me with the headaches.  I don’t go to my neighbors because I no longer think it is my house making me sick….there must be something else wrong.  At 3:00am I desperately write out a crude Will on a sheet of paper.  By 7:00am I am at the ER, one of many visits during this time and am put on steroids for the swollen sinuses and a cocktail of pain meds. I can no longer bear the pain in my head. 

During this time I am seen by several doctors.  The ENT is baffled because my sinuses are very swollen but I have no infection. The headache specialists tells me that she can not do anything more for me because these headaches are coming from my sinuses and tells me that I need to address THAT problem.  The allergist can not explain what is going on because now my blood work has come back showing NO allergies (contradicting the skin tests) but he also agrees that something is going on with my sinuses that needs to be addressed.  Later an infection is found at the base of my sinus where it meets the top of three teeth, unusual since the teeth are fine.  The audiologist tests can not explain my noise sensitivity but certain pitches/tones cause me extreme pain and vertigo, triggering migraine.  I visit my primary care doctor and am seen by two different psychiatrists and am told that I have anxiety and depression.  The list of prescription medicines is growing and only making things worse.  The headaches have become constant and excruciating.  The noise sensitivity is so unbearable that I can’t be around anyone.  I’m still trying to work, but any noise is unbearable so I end up hiding in my car to get away from it.  I wish I was dead.

Everything feels like sensory overload and my only option is to withdraw even more from friends and family feeding their suspicions’ that I am depressed.  Then I begin to notice a new thing…certain odors completely overwhelm me and give me an instant headache and make me feel dizzy, odors that other people barely notice.  I doubt my sanity.

Then I get a call from the inspector and he tells me that I have pennicillium/ aspergillious (a very toxic mold)  and Claudisporum in my bedroom wall and carpet.  The spore count (even with my five air filters running) was off the charts.  A spore count over 650 is considered unsafe and mine was in excess of 200,000.  He tells me to leave the house and have it professionally remediated.

Maybe I’m not crazy after all.

I leave the house but over then next week I unwittingly re expose myself over and over again as I meet with potential remediators.  I get sicker because I don‘t realize that once the carpet was pulled and the wall cut into, my home has virtually become a toxic wasteland (until the remediation is complete)…..spores have now been released into the air covering everything I own.

I live in a hotel while the remediation is in process. Everything pourus is discarded and must be replaced.  I am on so many medications that I have to keep a chart; a high dose of prednisone, nasal steroids, antibiotics, codeine, and morphine for pain, pills for anxiety, a strong oral anti inflammatory, darvicet, two different migraine medicines, prilosec plus countless OTC’s for pain. I was also given an anti nausea in the ER so I could keep all these pills down. 

My boss can not understand why I am unable to work since I’m out of the moldy house and eventually fires me.

Even at this point I still have no idea the extent of what toxic mold can do to a person.  At the most I think it is possibly a contributing factor to my misery, by causing an allergic type reaction.  Then when I find a website that lists the symptoms of toxic mold exposure……..I sob, so many stories identical to mine.

Yes certain types of mold can do ALL that.  It can have a very neurological effect with long term high level exposure.

Many people develop Chemical Sensitivity after mold exposure and I find this to be true for me when I move back into my house.  Even though they removed all the mold, the new flooring, paint, drywall, and all the brand new furniture make me very sick and I can not live there. The floor alone can take several months to off gas so I put my beautiful home on the market and set out to find *safe* housing.

Below is a list of the potential diagnosis’s I’d come up with along the way.

a) I’m loosing my mind.

b) Post traumatic stress from my head injury (5 yrs ago) is making me create somatic symptoms.

c) Aliens are abducting me nightly and drugging me…..this explains the way I felt every morning.

d) The klonipin I took for migraines two years ago somehow damaged my brain and central nervous system during the withdrawal.

e) The woman who died in this house before we moved in is haunting me and making me sick.

f) Someone is poisoning/drugging me.

g) I’ve turned into a hypochondriac.

It was all from the mold and now I finally understand what is going on with my body.  With knowledge comes responsibility and and I learn how difficult it is to rid the body of mycotoxins. 

Since we left Maxine has never had the “breathing” thing and many of my symptoms have gone away completely or lessened.

However I still struggle with the noise sensitivity and headaches and the chemical sensitivity is pretty extreme and offers new challenges and symptoms.  

Most of the time it’s hard for me to see my progress but when I think about how bad I was I feel somewhat encouraged.

Someone told me that ridding the body of mold is more painful than living with it. T he detox process is no fun and doesn‘t happen overnight…but at least now I’m on the right path.

Through education and support I now begin to learn how to maneuver through life with my new chemical sensitivities.

It is complicated.

My healing journey begins.