Hello, my name is Sharon and I live in Georgia. We had moved up here from West Palm Beach, FL, hopefully being able to settle in and plan for our retirement. But obviously things did not work out as we had planned. This is a story that I wouldn’t wish on anybody that would have to write at this time in their lives. I’d like to invite you to come with me on a journey in the life of a toxic mold patient.
Five years ago I was working for a company, but two months after my employment began I came down with pneumonia, bronchial 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, i.e.,: medications, dust, animals, etc.) This was the beginning. I sat right under the air conditioner vent.
The building was not an old one, 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 originally installed, nor was it ever properly maintained. This had been brought to management on several occasions by several different employees. What we didn’t know was not only the A/C not working correctly, but it was also making everyone in that part of the building ill. Which of course at that time we had no idea that the A/C was the cause of everyone’s illness. Even though you could not smell mold in the building, every other day a black soot like dust would show up on the counter tops 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 heart attack. 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 head pain 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 else’s the next day at work I collapsed 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, including CT Scans, MRI’s X-rays, blood work, 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 head pain got very severe I had leaked some fluid from my right ear and because of this we thought it may have been a pseudo-tumor 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 pseudo-tumor. 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 pseudo-tumor without first reading the results of the tests. So that went out the window, we were now back to square one. Some may not have known, still others knew but refused to acknowledge it.
Most felt there was something wrong, but didn’t know what. Many refused to do the simple blood work I asked for. We took it upon ourselves to have a different type of blood work 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 exam me, and he came into the room approximately 20 minutes later. He did not really listen to a thing we had to say, criticized 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 blood work, which he knew would FULLY diagnose what was wrong with me.
This blood work is the IgG, IgE (fungal panel). Not your standard blood work, 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 sick building 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. My husband at this time started making phone calls to OSHA, EPA, and even the CDC. He had asked all of them about the HVAC system and sick building 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 head pain 24/7, month after month, severe chemical sensitivity to the point I almost stop breathing completely. A lot of the time I can 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 was ” 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 what 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 Non FMLA and was told not to since that was for workman’s comp only. I was in a lot 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 may be the head pain 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. CBS/48 hours had aired on the Ballard family was our first explanation of what might be going wrong with me. Especially after I had heard of Ron’s stroke like 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 head pain 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 Neurotoxicologist in the US, Dr. Raymond Singer and were able to get an appointment with him.
This was then the devastating news came about 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 has 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 blood work for us. He had no idea what the blood work 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 blood work 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 blood work 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. But 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 pitfalls 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 fungus/molds can do, how to clean the wet area properly, proper maintenance 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 curable if caught and treated early enough. This nightmare has to stop some place.
Carstens family – living one day at a time
By Jessica B. Howell
The Northeast Georgian paper
Many people live their lives like there is no tomorrow, because they choose to. Sharon Carstens lives that way because she has to.
“How much longer I have, I don’t know,” she said. “I just don’t know.” Carstens suffers from systemic fungal disease, an illness that recently has begun attracting medical and media attention across the nation. Systemic fungal disease carries a long list of symptoms and can lead to multiorgan shutdown and death. It can incapacitate its victims and cause extensive pain and suffering for the victim and his or her family.
Until recently, the medical community confined this problem to persons with severe immune disorders, HIV/AIDS, organ transplants and shin graft patients. Sharon and her husband Kevin, have been married for 25 years. For the last several years, he has attended to her special needs and sought experts in the field of toxic mold syndrome.
“That’s what people who care for each other do,” Sharon said matter-of-factly. “You agree to ‘in sickness and in health.’ That’s the part of being married” I’ll never stop searching for a cure.” Kevin said. “I’ll never stop telling people how serious a little bit of mold can be.
The Carstens family have traveled around the country seeking specialists and doctors who could treat her. At 47, she had no health problems prior to her mold exposure. Sharon formerly was employed by a Gainesville company, where she worked for three years. During her first year of employment alone, she battled five bouts of pneumonia. Her health then began puzzling downward spiral. She endured painful headaches, blurred vision, thinning hair, cold and flu like symptoms, rashes, chest pains, excessively dry skin, short-term memory loss and stroke-like episodes.
The Carstens family sought medical advice across the region. She underwent hundreds of tests, leaving the family puzzled as to her sudden sickness. Different doctors had different diagnoses and treatments. Some refused to treat her; some told her that her condition was “all in her head;” still another indicated that her illness was her husband’s fault and suggested the he stop taking her from doctor to doctor.
Sharon Carstens was terminated from her job in March 2000. By 2001, the Carstens were forced into bankruptcy. Kevin Carstens formerly was self-employed, and the family has no medical insurance.
The Official Diagnosis
The Carstens family finally found a medical expert and environmental scientist who helped them to diagnose Sharon during the spring of this year. Special blood tests revealed that Sharon Carstens had excessively-high levels of toxins in her system, directly related to mold exposure. It was difficult for the Carstens to believe at first; in fact, it ws virtually unheard of. But when they examined the idea more closely, they realized that she sat directly under the air-conditioning vent for eight hours a day during her time with the Gainesville Company.
The Carstens believe that vent contained deadly mycotoxins that were a result of mold. They said the building had been flooded several times and believe the flooding had produced mold that blew out of the central heating and air conditioning system.
Sharon Carstens gets only one or two hours of sleep each night. She has a constant headache, a pain that forces her to stay curled up in bed on her worst days. Her pets will lie with her all day, she said, because they sense her pain. She can no longer work, and cannot enter strange buildings because of the possibility of mold exposure or multiple chemical sensitivity. If she enters a building that harbors mold, said Kevin Carstens, she probably will have to be carried out in less then five minutes. She also suffers form multiple chemical sensitivity and reacts to everyday products many may not think about- for instance, Dial soap causes a severe reaction in her. “Your body can only take so much before it breaks down,” she said.
The symptoms of this illness are extensive. Sharon Carstens’ short-term memory loss is a major hurdle for the family. She said that she could stand being confined to a wheelchair and suffer physical pain- what hurts the most is that this disease is taking her mind. I can’t cook or even write a check sometimes,” she said, describing an attempt to make dinner for her family. ” I went to cook a pot of spaghetti, and put water on to a boil. Then I couldn’t remember what I was doing.”
Her daughter has had to fill out checks for her in the checkout lines, explaining to her where to sign her name. Sharon Carstens received her undergraduate degree in English and history, but got to the point where she could not help her two children with their high school homework. She would sit for long periods of time, trying to remember facts to help her son or daughter, eventually, she said, she would give up. Even worse, her children would tell her not to worry about it- they could figure it out. “One of my biggest fears used to be the kids would come home from school to find her,” said Kevin Carstens over the lump in his throat, eyes downcast. “You just don’t know one day to the next.” I’ve thought leaving several times,” she admitted. ” Not committing suicide, but leaving and staying with friends or family, just so that they don’t have to go through this.” She describes each day as an emotional roller coaster.
High Levels of Mold
Apartment complexes, school, homes and offices around the country are vacated when high levels of mold or mycotoxins are identified. If the damage is extensive, the mold cannot be cleaned away with out professional assistance. “It’s not like the mildew on your shower curtain that we’re talking about, “said Sharon Carstens. Types of mold that are commonly associated with systemic fungal disease include aspergillus, penicillium, fusarium, Alternaria and stachybotrys. Mold exposure can be through inhalation, ingestion and dermal (skin) exposure.
No Cure Available
Medication is available to treat systemic fungal disease, but there is no cure. The costly medication can only slow down the illness that is devouring Sharon Carstens’ body and help to alleviate her symptoms. However, the Carstens’ financial situation does not allow for the purchase of such medications. She would need to be on five medications to treat her disease, which would cost the family more than $2,500 a month.
Thankfully, the Carstenses’ family has been a source of support and encouragement. They, like the Carstens themselves, found the idea of systemic fungal disease hard to believe at first. Now, the family takes one at a time, realizing that there may be no tomorrow.
Sharon Carstens : Symptoms of Toxic Mold Exposure
- Acid Reflux
- burning rashes that left scars
- Chemical Sensitivity so severe that my airway starts to close up and I lose my voice (This can last for several days)
- Chronic Fatigue
- Cold and flu like symptoms
- Coughing up blood
- Discoloration and swelling in temples
- Fatigue rapid heartbeat
- Hair loss or thinning
- Hands and feet swelling
- Hard to breath
- Hot or tender spots on scalp, numbness in temples
- Loosing of teeth
- Lump in solarplex area after eating
- Lumps and sores on scalp
- Lymph nodes still swollen
- Numbness in temples
- Persistent head pain
- Pressure behind eyes, in ear
- Rapid heartbeat/palpitations
- Short and long term memory
- Stroke like episodes when I enter a building that has mold in it
- Tightness in chest
- Unable to concentrate/brain fog
- Unusual weight gain
- “Zoned out feeling” like being drugged