Catch Up Mondays: I was feeling better when I left the moldy place. What happened? – revisited

I first posted this on November 16, 2012.  This topic is one that is hard to grasp but I have been asked more than once why this could be happening.  The toxins in the mold, mycotoxins, cause a great deal of damage to our systems.  Only after we remove ourselves for a time do we truly see what has happened and it is not what we are ever prepared for.

How many of you who have suffered from a mold exposure and asked this same question?  What happened?  Why am I more allergic and feeling worse?

The simple and yet not so simple answer is that it can take 2-12 weeks for your body to get the toxin and load level down enough after removing yourself from the constant exposure to recognize all the allergic responses the mold has caused.  You feel better immediately because you are no longer being exposed.  Then the allergic response kicks in and you suddenly realize that things that were never a problem before suddenly are.  The mycotoxins have done their damage and now you are becoming aware of what those damages are in the increased sensitivities and other illnesses that crop up (fibromyalgia, chronic fatigue, chronic sinusitis, autonomic nervous system dysfunction and severe depression to name a few).

I stopped working in the moldy environment and thought I was feeling a little better but then I was placed in a new school building where construction was going on and dirt was being moved everywhere for landscaping.  I began getting exposed to the mold spores in the dirt (my air filter cartridge by my desk needed to be changed after two weeks rather than the usual 2-3 months).  I was being exposed to toxic paints, toxic glues in the carpet as well as high levels of formaldehyde in the carpet and all the new furniture.  I was also being exposed to the dust from construction.

A few months later I went to the Environmental Health Center-Dallas where I was not exposed to chemicals or fragrances of any kind.  Slowly I began to notice smells when I went to the grocery store and would become dizzy after a short time in the store.  I was still wearing my clothes that I had worn in the work environment.

Fast forward about 8 months and I had a urine tricothecene test done which revealed a high amount of tricothecenes in my urine.  I was told to get rid of my clothes.  I did and then headed for Dallas for surgery.  Between removing my toxic uterus and ovaries (my ovary we learned later had 125 ppb of tricothecene mycotoxin in it), anesthesia and starting over in safe clothes I became even sicker.  I began noticing that when I got near mold or someone who still had their clothes  from their moldy homes I would go into tremors.  I experienced these tremors when testing molds and mycotoxins.  My chemical sensitivities and food allergies were also heightened.  The worst of this happened about six weeks after my surgery.

Friends of mine have told me the same stories.  Some had this happen exactly at 8 weeks; some had it happen just before week 12.

Catch-Up Mondays – I knew I was Sick But – revisited

This post was first shared here on November 2, 2012.  I don’t even think I have mentioned my entire diagnosis in my book.  My letter with the diagnosis would have been a good thing to have added. 

Someone asked me a short time ago to tell more about me.  Rather than go from the beginning I am going to talk about being sent to Dallas and getting my diagnosis.  I knew I was sick but had no idea how far-reaching the mold exposure had been in terms of my body.

I had been sick for about 2 1/2 years when I was finally sent to Dr. William Rea at the Environmental Health Center-Dallas through my ENT.  I arrived on a cold day in February 2002.   After meeting with Dr. Rea, doing lots of tests and being observed, a letter was written for me to submit to my doctors here and to my attorney for my workers’ compensation case.  Dr. Rea wrote an extended letter and I am going to try to give a synopsis of what he found wrong.

Toxic Encephalopathy secondary to mold, mold toxin and chemical exposure (when I was moved from the school with the mold to a new school being painted, etc. while we were trying to set it up for school to start)

Toxic Effects of Petrochemicals and Solvents

Toxic Effects of Mold and Mold Toxin

Immune Deregulation

Allergic Rhinitis

Food Sensitivity (only safe foods at the time were rabbit, venison, deer, elk, cranberries, acorn squash, eggs, raspberries)

Mold Sensitivity

Pollen Sensitivity

Chemical Sensitivity

Chronic Sinusitits

Chronic Fatigue

Fibromyalgia

Autonomic Nervous System Dysfunction

Multi-organ system dysfunction

Neurotoxicity based on SPECT scan

Hyper metabolic and hyper reactive state

I couldn’t sleep, I was on a nebulized antifungal, I was on so many medications when I arrived.  I would sit and look at the television and it was as if the screen was narrowing and moving toward me (a very strange sensation), my depth perception was a mess.  I would be in the testing room, take a drink my from glass water bottle and then set it back down.  Bam, glass and water would be all over the floor.  I couldn’t gauge when the bottle was on the floor unless I slowly lowered it and listened for it to touch the ground before I released it.  My short-term memory was just that, short-term.  My husband made me walk from our condo to the center so that I would be able to find it because I would not have a car when he went home.  Every morning we would walk the four blocks and when we got to the parking lot I wouldn’t remember where I needed to enter the building and my husband would once again have to show me.  Once in the building when I would leave the testing or exam rooms to go to the sauna, I would invariably turn towards the exit.  I just couldn’t keep my directions straight.  So much goes on at the center.  There is doctor appointments, lab appointments, provocation/neutralization skin testing, sauna, IV’s.  I soon learned that my weekly appointment calendar was my only salvation.  Every Friday I would schedule all my appointments for the next week.  I lived by that appointment book.  It was the only way I could remember where I was supposed to be at any given time as long as I could remember how to get from point “A” to point “B”.

In fact when I returned home after a long stay in 2003 and moved into my “safe” home my memory was still a mess.  One day I got up and put a pot of beans on to cook in the kitchen and then went back into my bedroom.  I still had no furniture in the kitchen or living room.  I pretty much lived in my bedroom with my army cot and blankets, my CD player and my television.  One afternoon my smoke alarms started blaring (all four of them from the entrance to each bedroom).  I began to panic!  MY HOUSE WAS ON FIRE!  Was there a wiring issue?  What was going on?  What would I do if my house burned down?  Where would I go?  I began walking through the house looking for any signs of trouble.  Then as I walked towards the kitchen it dawned on me that I had beans on the stove.  The beans had boiled dry and stuck to the bottom of the pan.  Since that time I have to set a timer whenever I put something on the stove.  The caveat to that is that I have to be within ear range of the timer.  I have turned the timer on and went outdoors only to see smoke coming out of my kitchen vent.

My autonomic nervous system was a mess too.  I would go to bed and the slightest movement (me rolling over or me just moving in the bed) would send me into horrible state.  Imagine being at the top of one of those rides at an amusement park where you are raised to the top and then dropped.  That is what it felt like to me.  And this would happen over and over again all night long.  If I tried to get up and go to the bathroom the mere act of lying back down would set it off.  This went on for months and months.  I haven’t had a severe reaction like that in a very long time.  I still get that sensation occasionally but thankfully it is not my nightly companion.

My life has been turned upside down and inside out.  I say I live in the Twilight Zone or Bizarro Land.  I make the most of what I can do and have to accept my limitations and my losses.  The depression was eating me alive from the inside out and I had to make a decision.  Either I let the depression and loneliness and sadness take over my life or I had to learn to change the way I perceived this invisible illness.  I have chosen to try to change my perspective.  I try to stay positive, I try not to feel envious of what others can or are doing, I try to be grateful for what I have and not dwell on what I don’t have.  When friends tell me they are going on a cruise, or going to another country or on some long weekend, jealousy starts to set in and depression rears its ugly head.  Sometimes it is hard to hear the stories from their trips when they return.  I had been home from Dallas for about a year when my husband had the opportunity to go to England as a chaperone with his high school.  Oh how I was envious.  I wanted him to go, but I didn’t want him to go.  I didn’t want to participate in the plans, didn’t want to hear where he was going, didn’t want to think about being here alone at home with him far away having fun.  Once he was gone I decided that this allowed me the freedom to watch whatever movie I wanted to watch or watch movies all day.  I could sit in my bed and read all day if I wanted to.  I ate when I wanted to.  I got in my car and drove around just for the sake of driving around.  I was good until he came home with pictures from the trip.  Sadness welled up inside of me as he told me where he had gone and explained what he had seen.  I wanted to just bolt.  I didn’t want to hear the stories, didn’t want to see the pictures, didn’t want to feel the sadness.  Finally I realized I wasn’t being fair to him.  He was excited about this amazing journey and what he had seen and done.  I listened and I looked and I put on my brave face.  I have to say, however, that I haven’t looked at those pictures since and hate it when we are watching a movie and he tells me that he has been to that fountain or that museum.  I may be getting stronger every day but the realization that I probably will never make that kind of trip is hard but I am becoming more okay with it as time goes by.

Allergic to Life featured in Indies Unlimited

Today “Allergic to Life”  is being featured as a “new release” on the Indies Unlimited website.  I am so excited to have the opportunity to share my story.  I don’t remember how I discovered the Indies Unlimited website but I am so thankful I did.  I have learned so many things regarding blogging and book promotion.  I have met some great fellow authors on this site and received wonderful support.

It is my hope that by sharing my story I am bringing more awareness to the public about the dangers of mold and what life is like living with chemical sensitivity, food allergies, and chronic illness.

I continue to thank all of you for your support in my endeavor.

Catch Up Mondays: Mold Spores, Mycotoxins, and Cross Contamination

I originally posted this on August 27th, 2012.  As I read or hear from more and more people about being contaminated by mold, I decided it was time to share this post again.  Mold is insidious.  It gets into and onto everything including those things that we hold most dear like a favorite stuffed animal from childhood, a well-loved book, and our precious photos.  Some of you have heard this talk from me many times about giving things away.  I have heard from some that all I needed to do was place my things out in the sunshine or wash them in borax or vinegar.  For me the decision was my things or my health.  I had gone through so much by the time I was told that it was best for me to give up my things.  I didn’t want to go down that road again and risk another contamination.  I offer what I and some others have done but ultimately the decision is up to the individual.  Some have managed to keep some items and not others.  This is such an individual illness.

Many of you living in the US have seen the commercial on mesothelioma.  It talks about if you or a loved one was exposed to asbestos either directly or indirectly  you could experience this form of cancer.  It has taken years for asbestos and the damage it can cause to finally come to the forefront and for these cancers to show up.

When trying to explain cross contamination from mycotoxins and mold spores, I ask if the person I am talking to has seen this commercial.  I explain that it is very similar.  I was exposed to mold spores and mycotoxins where I worked.  I wore those clothes home and sat on my furniture, walked on my carpet, lay down on my bed, sat in my car and those same spores were spread into the air as I walked around the room.  Those aerosolized spores then were sucked in to my computer fan, my refrigerator fan, my air conditioning ducts and anything else that has a fan or takes in air.  I was constantly being re-exposed at work and then through cross contamination in my home and car.

After getting the results from my urine tricothecene test, I was told that I needed to get rid of my things (clothes, computer, cloth furniture, papers).  I was told this just as I was about to make my second trip to the Environmental Health Center-Dallas for testing and to have major surgery.  I ordered new clothes and was told that until I left and something could be done with regard to my furniture that I could cover the furniture with sheets to help protect whatever new I had bought.  I had no idea that I would be in Dallas for most of 2003.  When I came home my husband had built me a new house using safe products, tile floors, etc.  Before coming home I ordered new clothes again and would only come home with the clothes on my back and toss them and shower before coming into my house.  I was determined not to cross-contaminate my safe place.  I did not bring my computer, refrigerator, television, cloth furniture, papers or clothes.  I literally started over.

When I tell those who have asked me questions or sought advice about such things that they need to basically start over, it is overwhelming and hard for them to comprehend.  I remind them that they are just “things” and their health and recovery is more important than “things”.  I understand their pain at getting rid of their belongings.  I understand their fear of re-contamination.  In my book I wrote:

On February 11, 2004, I wrote in my journal, “I hate this aspect of my life. It causes the paranoia. I am so afraid of re-infecting myself that I wonder: even if the allergies get more manageable, will I be able to go out anyway because of this fear of mold and mycotoxin? It has already taken so much of my life away.

I also wrote:  I saw Rick toss out my old stuffed Scotty dog that I had had since I was very little. I saw him toss out my favorite old teddy bear. I saw him pack up old blankets, cloth Christmas decorations, baby clothes that belonged to the girls, baby clothes that were once worn by me. It was devastating!

This illness goes beyond the physical pain of reactions and extends to the raw emotions of getting rid of cherished belongings, being told you are crazy, being told environmental illness and multiple chemical sensitivity does not exist and of learning to deal with isolation and a new way of living.

Mold Forces Legislators out of Council House

Recently my husband was given a copy of the Cherokee Phoenix’s September 2013 issue.  He was reading and suddenly saw an article titled, “Mold Forces Legislators Out Of A Council House”.  I immediately read it and then found it online so that I could download the September Issue.  The article is on page 6 of the newspaper.

What caught my eye and I have been saying for ever and ever are the following sentences:

“Although the mold levels were not

exceedingly high for most rooms, each

individual reacts differently to mold. Some

may have no symptoms while others may have

headaches. The Cherokee Nation’s top priority

is the health and safety of our employees.”

There was a number to contact the writer of the story which I am doing this weekend.

 

 

 

Mesothelioma Awareness – September 26th

On August 27, 2012 I wrote a post titled Mold Spores, Mycotoxins and Cross Contamination.  In this post a related a commercial here that has run on the television about how family members can be ill from coming in contact with asbestos on the clothes of family members who worked with asbestos.  My post was trying to say that they “get it” in terms of cross contamination with asbestos but the public just doesn’t get the cross contamination of mycotoxins and mold spores just yet.

About a week ago I received an email through the contact portion of my website.  The email was a heartfelt message from a man whose wife is a “rare” Mesothelioma survivor.  He asked not for donations, time, or money but if I would be willing to share his wife story.  September 26th is National Mesothelioma Awareness Day.  I am not able to make changes to my website but offered to share her story here on my blog.  I am aware of the prognosis of someone being diagnosed with Mesothelioma and it is not good.   I am also amazed at those that continue to survive long past the normal diagnosed lifespan.   We have a tenant that has outlived his diagnosis with Methoselioma.

Please watch the video clip of Heather Von St. James.  In the clip she talks about preferring to live with hope.  I talk a lot about survival, courage, and hope.  Heather’s story is definitely one of survival, courage, and hope.

 

Catch Up Mondays: Mycotoxins – revisited

This was first posted on August 23, 2012.  I still find that many understand what a mold spore is but have no idea what mycotoxins are and how dangerous they are to the body.  When I met with a traditional allergist almost a year ago he didn’t want to believe me about the molds, mycotoxins, and my illness or sensitivities.  One of the questions he asked was, “Do you even know what a mycotoxin is?”.  Of course as soon as I began saying what it was, he didn’t want to hear it.

When I first became ill and we realized that I was being exposed to mold and had an allergy as well, I thought ok so that is what is making me so sick.  I had no idea about molds and their byproduct, mycotoxins.  I learned that yes the mold can make you sick and cause allergic reactions but the mycotoxins are even worse.

Molds produce mycotoxins which are poisonous to our bodies, can cause multiple illnesses and death. In September 2002 I had my lymphocyte panel checked again.  My numbers were not good.  The mold mycotoxins were still very much attacking my body.  A urine Tricothecene test was ordered to determine what my level was.    The test revealed that my level was an 8.  The best being 0-1 and the worst being 18.  I was diagnosed as having mycotoxicosis referring to the poisoning from exposure to mycotoxins.  The mycotoxins can potentially cause acute and chronic health effects including weakened immune systems  from ingestion, skin contact and inhalation.

Two years later while on a return visit to the Environmental Health Center-Dallas, Dr. Rea told me about another test for mycotoxins using DNA testing on mucous and or tissue samples.  I became ill with a sinus infection while there and we collected mucous from the sinus and had it tested.  The machine detects DNA of molds and mycotoxins.  We were checking for Tricothecene since that was high in my urine.  The lowest detectable level of the machine is .02 ppb.  The level in my sinuses was quite high at 11.54 ppb.  Dr. Rea then suggested that I speak with the doctor doing this test about checking tissue of my ovaries taken during my hysterectomy in 2003.

As soon as I returned home I contacted the hospital in Dallas and requested that samples be sent to the Environmental Health Center for testing.  The report I got back was unbelievable.  The level of mycotoxins in my ovary was 125 ppb.  The sample had to be diluted because there was so much the machine couldn’t count it.  No wonder I was sick.  No wonder the count went down right after the hysterectomy and I became so sick from ridding my body too quickly of the mycotoxins.

Since that time my urine Tricothecene level has bounced back and forth.  It seems to be higher when my fungal sinus infections are bad because the fungus has taken over my sinuses.  The Tricothecenes are stuck in my cells (kind of like velcro is how it was explained to me) and periodically I am able to release them.

There are many different mycotoxins produced by different species of molds.

Catch Up Mondays – At a loss for words – revisited

Don’t you just hate it when you lose or can’t retrieve the word you want from your brain?  Since becoming ill I have found it is a regular occurrence.  I will be talking to someone and in the middle of a sentence I can’t come up with the word I want to use.  Try as I might, the word won’t come.  Sometimes I have been successful by trying to find another word that means something similar.  In the middle of a reaction as I was in yesterday, I was hard pressed to come up with the other word.

What was the word you say?  I don’t know.  I still don’t know.  I was trying to convey how when dealing with someone I would just respond very vaguely without giving either a yes or no answer.  As I was searching for the word I became tearful.  I tried and tried and finally came up with equanimity (calmness, poise, serenity, self-possession).  It seemed to work but wasn’t really the word I wanted to use.  Maybe I was wanting to use apathetic (showing little or no emotion, indifferent, not interested or concerned).  As I am writing this definition I think that is the word I wanted to use.

As hard as I try to retrain my brain by reading, crossword puzzles, etc. I still lose words in conversation even more so in the midst of a reaction.  I still find when I type that I transpose the same letters in certain words over and over again even though I know how to spell the words.  Yesterday when I was in the reaction my handwriting became hard to read (see picture for a sample of my handwriting in my journal during a reaction) and I spelled things wrong, my right hand became very cold and I had a much harder time expressing myself.

I have been told that mold mycotoxins can damage brain cells.  Sometimes you regain some of the processes you lost but usually not all of them.  When I was first exposed to mold (didn’t know it then) I would take phone messages and then look at them and realize they didn’t make sense and have to re-write them. Sometimes my boss would come in and ask me what the message meant even after I am sure it had been rewritten.  My handwriting was also deteriorating .  At the time I would become frustrated over this but it never dawned on me that something serious was going on with me and my brain.

This was originally posted on June 23, 2012.  I still find myself in a conversation and suddenly don’t even know what I am talking about.  All it takes is the tiniest of distraction (a noise in the background, a knock at the door, hearing someone else’s conversation going on, or the person on the other end of the conversation saying something that distracts me).  When typing I make the same mistakes over and over and over again despite knowing how to spell the words and where the keys are on the keyboard.  It is so frustrating!  Has chronic illnesses affected you this way?

Can my home be cross contaminated with mold from another house?

Yes it can in my opinion! My home was cross contaminated from my workplace. I unwittingly brought mold and mycotoxins into my home via my clothes, shoes, purses and even my hair.

There are so many schools of thought on this and opinions from those who have experienced mold exposure and having to leave their home/work environment, from those who do remediation, from doctors and scientists who specialize in mold and their mycotoxins, and from those who have no understanding of mold at all.

What I believe is that when you leave your home that is contaminated with mold and their toxins (mycotoxins) and take your belongings with you, you are without realizing it cross contaminating your new environment. The mold spores and mycotoxins get spread through the air as clothing and furniture are brushed against other things  in moving them from place to place. The fan on your computer puts air out and dust that came from your contaminated environment.

Some believe that you only need to leave your paper, cloth furniture, clothing or porous items behind. Others believe you need to also not take your computer, refrigerator or other electronics that may have dust in them from the previous home or office. There are those that believe if a piece of wood furniture has a hard seal on it, it can be saved by wiping down with ammonia and possibly spraying more sealer over the wood surfaces. Others have had success in keeping their clothing by washing them in ammonia which Dr. William Croft believes can kill the mycotoxins.

I learned about the ammonia and clothing long after I had gotten rid of mine. Although for my own piece of mind, I don’t think I would have kept my clothes and taken a chance that it would work for me. After going through all that I have and still deal with today as a result of my mold exposure, the thought of doing something and risking that  the mold/mycotoxins are not being completing killed off is not something I want to do.  Risking a re-exposure and worsening of my conditions is just a risk I cannot personally take. Not only have I had to throw away clothes from my home that I had either worn to work or washed with the work clothes or stored with the clothes, I have had to throw away clothes after exposures in defense doctor appointments.

This question has been posed in search engines that have led others to my blog.  To those  who follow my blog and who have experienced mold exposure and cross contamination, I would love to hear your responses to this question.

DISCLAIMER:  I am not a doctor, mold remediation specialist or expert in the area of mold and mycotoxins.  Anything I say is just my opinion based on my own experiences.

I have tremors only on the right side of my body.

Again this was a search that led someone to my blog. I have talked about my having tremors around mold  and mycotoxins and while testing molds and mycotoxins. My tremors are always on the right side of my body and start with my right hand beginning to shake until my arm starts, my leg starts and then my whole head and neck shake.   This is followed by my face feeling as if the skin is being stretched tightly and I can’t breathe during the facial spasms.  When they stop, I gasp for air and then the ordeal repeats itself over and over.  For me I believe the fact that my tremors are always on the right side of my body may have to do with the fact that the left side of my head was most affected by the mold, bacterial and fungal infections.  The trigeminal neuralgia I often talk about affects only the left side of my face.  Using this train of thought and knowing that I have problems with my brain with short-term memory, loss of words, etc. the left side of my brain could be affected and have a direct impact on the right side of my body especially when I am exposed to molds and mycotoxins.

Do any of you mold sufferers have these types of tremors.  Do you have a side of your body that seems most likely affected?