When did you move into your current home?
How many years have you lived there?
Six years. We had the kitchen flood in 2010, toilet overflow in 2014, and then the kitchen again in 2015 as we investigated the source of the mold.
How soon after you began living there did you begin to feel sick?
I started to have chronic fatigue in 2013. Had sleep studies which came back with slight sleep apnea, tried CPAP machine with no improvement in the fatigue. My youngest child was chronically sick shortly after we moved in, she was one year old at the time, constant respiratory infections that led to the diagnosis of asthma. My oldest child was sick but not as bad; she mostly had severe nose bleeds and allergies.
I didn’t connect all the dots until I mysteriously got sick in Nov 15, 2014. The kids brought home head lice from school and we all treated with permethrin shampoo. Somehow the combination of head lice, insecticide and house mold worked synergistically to tip my immune system.
What were your symptoms?
The first symptom that alerted me that something was wrong was the sensation of crawling on my skin along with ice pick/pinprick pain in random places. Shortly after, I noticed that I had the inability to recollect words, slurry speech, memory loss, and an overwhelming fatigue.
Other symptoms included vision disturbances, eye inflammation, and bloodshot glassy eyes with conjunctivitis like feeling. I also experienced incontinence, facial muscle spasm, insomnia, rash, telangiectasia, and changes on the skin of my face, irritability and severe depression. Later I started having a tight chest along with heart pain.
How many doctors did you consult with?
A Dermatologist who told me she didn’t see anything on my skin from 5 feet away. My primary care Doctor who suggested it was all mental. A second Dermatologist who ordered a biopsy, skin cultures, and some basic blood work. An integrative MD who sent me for Lyme testing. An Optometrist that told me my eyes were very inflamed. An allergy and immunology specialist who agreed to order Dr. Shoemakers laboratory tests but who told me she would not know how to interpret the results. Finally I went to see a Doctor who is also a mold survivor and started me on detox therapy. A week after I started treatment I began to feel improvement. I woke up feeling refreshed; I had forgotten how it felt to be refreshed. Unfortunately I am now mold sensitized and begin to feel symptoms if I am re-exposed.
How helpful were the doctors you consulted with?
Other than the last doctor I saw, all 5 previous doctors were not helpful at all. It took the best in me not to give up. Luckily, I am a nurse and I knew that something was wrong, that my body was giving me signals that could not be ignored. I was determined to find out what was going on.
Did any of your initial doctor visits consider mold or air quality as the cause of your sickness?
Never! With my children being chronically ill, we frequented the emergency room, and saw many Doctors including Pulmonologists through out the years, and not once did the question of air quality or water damaged building come up. Even in 2015, after I showed the Doctors evidence of mold that included laboratory tests and a remediation plan, not a single Doctor thought mold had anything to do with my kids or my symptoms. That just blows my mind!
When was mold identified as the cause of your sickness?
I had to do all the work too. I had to not only identify mold as the cause of my sickness, but I had to search really hard to find a mold literate MD.
What treatment are you currently under?
Cholesteramyne along with many supplements and mold avoidance. I was also advised to lessen the toxin load via my diet and hygiene products. Now we eat mostly raw and organic foods, avoid sugar, and processed foods.
How long do your doctors think it will take to recover?
She believes it will take me about a year. I may take a little longer. Now that I have the knowledge and doctor I will get the rest of my family on detoxification regimen.
There is such a huge gap in care when it comes to mold illness that I found it extremely frustrating. I believe every medical assessment should include the question “have you been in a water damaged building?” There were many times that I felt so alone and with so little support that I didn’t know what to do. Luckily I have met some wonderful people in the many mold support groups that I have joined. The amount of people inflicted with mold illness and co-infections is unbelievable! So many have been misdiagnosed and unable to find medical help. They have shared their experiences and their healing and really helped guide me in finding my healing journey.