Sharon Carsten's Story

 

After reading my wife's story it may help you to understand why I have become so determined in my quest to make sure that this doesn't happen to anymore unsuspecting individuals. To render  assistance and support  to those who unfortunately have  been affected. Most who have experienced these horrendous multisystem, multisymptom illness are aware how deviastating this can be to every part of your life. Not to mention your immediate family, friends and the effects that it has on their lives due to their observation on the disabling effects it has.

Because of my research over the years I have come to realize how wide spread this is across the country and how prevelent this silent nightmare really is. It has been drilled into our heads many times that these are very rare cases and that is the farthest from the truth.  Unfortunately, it is more common than what we are told to believe and some that I have been in touch with are no longer here.  We have been informed  that there are no reports of human's dying from mold exposure due to inhalation. Again, NOT true. 

Because of this I now run one of the largest support groups on the net so I can reach out and help many at one time. There are over 2000 members and it is growing daily.  I wish that were not the case.

Sincerely,

KC (Kevin Carstens)
Alternative Resource Consultant
Email:tigerpaw2c@yahoo.com
   Owner of: Sickbuildings
http://health.groups.yahoo.com/group/sickbuildings/

                                         Sharon's Story

This is a story that I wouldn't wish for anybody  to have to write at anytime in their lives. I'd like to invite you to come with me on a journey in the life of a toxic mold patient.

 

Eight years ago I was working for a company,  just two months after my employment began I started coming down with pneumonia, bronical pneumonia that also triggered asthma (which I never have had before), coughing up blood. Just to inform everyone, I have never been allergic to anything prior to this, ie: medications, dust, animals, etc.) This was just  the beginning.

 

I sat right under the air conditioner vent. The building was only 8 years old, but it did have numerous leaks and several times the restroom did flood down the hall. The main exposure for me was the a/c  which never worked properly since it was orginally installed, nor was it ever properly maintained.  Which of course at that time we had no idea that the a/c was the cause of everyones illness. Even though you could not smell mold in the building, every other day a black sootlike dust would show up on the countertops and computers.

 

I continued getting ill, from just not feeling quite right to 5 bouts of pneumonia. My hair started thinning out, my skin was drying out, I had chest pains to the point that the doctor thought I was having a heartattack.  This went on for almost 2 years when one week in June 1999 I started coming down with a headache that continued to get worse and would not go away.  At times the headpain had gotten so severe that all I could do was hold my head and cry.  I did everything I could to hide this from everyone else at the office, it was just something I did not want anyone else to see.  I would go outside behind the building, but got caught several times. This always seemed to happen first thing in the morning, which makes sense now. It's either when they were cooling off the building or heating it up. This went on for one week until I finally went to my family doctor. I was told it's just a migraine and given some pain pills. To my surprise and everyone elses, the next day at work I collasped and was rushed to the hospital. My symptoms were exactly like I just had a stroke and they lasted  7 hours. To this day I can't remember too much about what happened. This is when the journey really started to begin, seeing many different physicians in all types of fields. This was to be the first of at least 50 such episodes, still the test results were negative. I had all kinds of "standard" tests done, ie:CT Scans, MRI's, X-rays, bloodwork, allergy test, thyroid test,2 spinal taps, diabetes test,etc.all with negative results.

 

We went from doctor to doctor trying to find out what was wrong with me.We could not get any two physicians to come up with the same diagnosis and we knew it was not migraines. At times when the headpain was very severe I would  leak some fluid from my right ear and because of this we thought it may have been a psuedotumor, and that was a great relief. They admitted me to Emory University Hospital for observation. The senior neurologist came in and said that the other doctor was correct, it was a psuedotumor. But when my husband had asked her if she had read the two spinal taps, she hadn't. The thing is you can not properly diagnosis a psuedotumor without first reading the results of the tests. So that went out the window, we were now back to square one.  Some physicians may not have known, still others knew but refused to acknowledge what was causing these symptoms.  Most felt there was something wrong, but didn't know what. Many refused to do the simple bloodwork I asked for. We took it upon ourselves to have a different type of bloodwork done that we had just heard about. We contacted Washington, DC to see what doctor they would recommend in the Occupational/Environmental field in the state of Georgia. They recommended a doctor connected to Emory University, unfortunately when we arrived at the office for the appointment we were to see another doctor. This one had an associate examine me, and he came into the room approximately 20 minutes later. He did not really listen to a thing we had to say, critizied the paperwork written by a leading expert in the field and told us to go back to my primary care doctor, that I was not really sick. He refused to do the bloodwork, which he knew would FULLY diagnose what was wrong with me. This bloodwork is the IgG, IgE (fungal panel). Not your standard bloodwork, unless you are a doctor in the environmental field. We asked him and every other doctor we had seen to this point, could something be coming from the air conditioning system at work that may be making me ill. Every doctor completely ignored that question. I have heard of sickbuilding syndrome, but did not know what it was. We still at this time had no knowledge of toxic mold.

 

My husband started to suspect that the building was getting me sick. He started making phone calls to OSHA, EPA, and even the CDC. He had asked all of them about the HVAC system and sickbuilding syndrome and the response that he had received was in my opinion very unprofessional. They really didn't want to hear what my husband had to say, nor did they completely answer his questions.

 

I proceeded to get worse with new symptoms cropping up. Most people do not realize that even though you are out the environment you will continue to be ill for quite a long time. The new symptoms were burning rash, that left a scar after it disappeared, constant headpain 24/7, month after month, severe chemical sensitivity to the point I almost stop breathing completely.

Most of the time I could not think clearly, also at this time I was having problems with my short-term memory and some long term memory. When I was spoken to by management I could not remember what they had said two minutes later. I still had fellow workers asking me to help them, their comment to me were" You do more on your worst days than most of us do on our best." This seemed ironic to me, because I knew my work was nowhere near the capacity it had been. At this time I went out on what I thought was short-term disability. My manager and the Human Resource Manager told me to mark FMLA which I did (this was the second time I had gone out on what I thought was disability.) I was going to check NonFMLA and was told not to since that was for workman's comp only. I was in alot of pain and could not think clearly anyway so they took full advantage of my situation. After 4 weeks I received a letter stating that my time was up and if I did not return to work on March 29th WITH NO RESTRICTIONS, then on March 30th I would be terminated. All of this being done while still under doctors care. They were good to their word, I was terminated.

 

I don't know what they were thinking when they terminated me, that maybe the headpain and illnesses would disappear? But to our amazement it was just the beginning. The insurance on me that we had through the company (which we were now paying for) was only going to last one more year. Not much help there. From this point on we were doing everything we can to continue testing and seeking further medical help.

 

One night on CBS/48 hours, had aired a story on the Ballard family. This was our first explanation of what might be going wrong with me. Especially after I had heard of Ron's strokelike episodes. I thought I would never hear this. Because, every doctor that I had mentioned it to and one had actually saw me in the process of having one of these episodes, they all totally ignored it. All I could say at that time was thank God for 48hrs and the Ballard family. Now at least we had a direction and a possible cause for my illness. At times the headpain was so severe that all my husband could do is rub my back and try to comfort me. I had no idea that at this time that my husband was preparing my children for a very dire future. We had heard about one of the leading Neurotoxicolgist in the US, Dr.Raymond Singer and were able to get an appointment with him. This was when the deviastating news came, that it had caused me brain dysfunction.(brain damage). Since our finances are so low we are unable to continue getting the rest of the testing done to determine to what extent the brain had been damaged. We were still guessing as to what was wrong with me, as of yet we still had no concrete medical proof.

 

 A surgeon we knew was kind enough to order the bloodwork for us. He had no idea what the bloodwork was.  But after listening to my symptoms many of his patients may have been experiencing the same affect from mycotoxins. He had mentioned that he had many sick patients coming in to his office and no matter what tests they ran all the tests came back negative. But he did realize what we were saying made sense. Unfortunately, he was not in the position to treat this kind of condition. This is when our search started for a doctor that knew how to treat and test for mold exposure. The bloodwork and the results were achieved one year after I was terminated. It took us that long to finally find someone to listen and just to draw blood. When the results came back in and he read them his first question to me was "Where did you get this, in a cave?" Because that is where he was informed that exposure to these types of mold were found.

 

The bloodwork came back with high levels of Stachybotrys, candida albicans, penicillium, aspergillus and many others. In a later test they also found extremely high levels of fusarium. What we know now about these molds and some of the toxins they produce and the damage they cause, we knew we had a long road ahead of us. We had our proof, but seeing the results in black and white was still upsetting.

 

Again, due to finances we were unable to see a doctor for quite some time. Finally in April 2002 we were able to see Dr.Vincent Marinkovich in California (only through the financial help of family and a friend). He knew exactly what I was going through (unfortunately he has seen it too many times) and I was finally able to get on two (2) of the five (5) antifungals that I would need to treat this. Now it is a matter of time, hopefully these medications will do what they need to do. But the process will take several years before the results will slide back in our favor.I still am unable to find a doctor in Georgia that will treat me. Even with finding a doctor I could not afford to get all the medications I would need, they are so expensive.

 

As far as my family, it has changed our lives completely. Things I used to be able to do around the house now falls to my children. We are unable to go many places because I react so often. A simple walk with my husband is almost impossible. And financially it has broken us to the point of bankruptcy.

This journey is not over yet, but the road ahead is very long, windy, full of pitfulls and more hidden surprises. The maddening thing is all of this (and not just for me) can and could have been prevented. If people were told the truth about what molds/mycotoxins can do, how to clean the wet area properly, proper maintance of air conditioning units. And most importantly, GETTING DOCTORS TO LISTEN TO YOU, DO THE PROPER TESTS AND TREAT YOU WITH THE PROPER MEDICATIONS. This is cureable if caught and treated early enough. This nightmare has to stop someplace.

 

Sharon

 

 

Update: As it stands today some symptoms have all but disappeared, others are the same as they were in the beginning. 

Symptoms: Previous (while still in the building)

Cold and flulike symptoms
pneumonia
persistant headpain
bronchitis
Coughing up blood
Hard to breath
Tightness in Chest
Rapid heartbeat
Pressure behind eyes                                                            
Loosing of teeth
Short and long term memory problems
Pressure in ear/fluid draining
Acid Reflux                      
Unusual weight gain
Numbness in temples
Fatigue
Hair loss or thinning
Burning rashes that left scars
Unable to concentrate/brain fog
 "Zoned out feeling" like being drugged
Stroke-like episodes (approx. 20)
Discoloration and swelling in temples
 
Current:
                                                                                                           
Vomiting
Acid Reflux
 Diarrehea
Tightness in chest
Chronic Fatigue
Pressure behind eyes
Numbness in temples
Hands and feet swelling
Lumps and sores on scalp
Hot or tender spots on scalp
Lymphnodes still swollen
Persistant headpain
Strokelike episodes when I enter a building that has mold in it
Rapid heartbeat/palpitations
Unable to concentrate
Short term memory problems
Fibromyalgia
Lump in solarplex area after eating
Chemical Sensitivity so severe that my airway starts to close up and I lose my voice. This can last for several days