Post by See Jane Crawl on Jan 13, 2007 15:54:24 GMT -5
I contracted this disease 13 years ago, I live in Phoenix, AZ & am a 50 year old female. My 22 year old mildly retarded daughter also contracted it at the same time. We were living in a rental duplex at the time & I believe this is where we got it. We moved into the duplex in January 1994, it was an older place, but looked very clean and well kept. All went well until we had to start using our swamp cooler around the end of April. All hell was breaking loose! I turned the cooler on when I left for work one morning & when I came home that evening there was a layer about an inch high of mold on all the carpet throughout the house! ( I found out from the landlord that he had purchased used carpeting for this rental unit!) I had even found a weird fungus or mold in the oven of all places! This place was a biological nightmare waiting for us apparently! Then a week or so later the mold in the bathroom & Kitchen around the pipes under the sink, was a lovely shade of green. And throughout the house on the interior walls, a thick, black gooey substance started oozing out of the walls through the paint. I had never seen anything like this in my life! Then the carpet came alive with fleas & there was a green gooey stuff about 1/4" coming up the walls, God only knows what that could have been! I had an exterminator come to the house & he told me he had never seen fleas that large before! We also had an outbreak of some small fly with iridescent wings driving us nuts for a few weeks. We did move out of that place as quickly as we could afford to, but we still exposed to a number of things that infected us.
My daughter was born with brain damage due to having a stroke while I was carrying her. She had seizures as a small baby, but had a shunt placed in her head and the seizures had stopped and she did not have to take any anti-seizure medications.
Her seizures began about 3 months after leaving the rental house from hell. She had Grand Mals & has been on numerous & high doses of medicines. None seem to work very well. She was 10 years old when her seizures began again. Her doctors tell me the onset of her seizures is due to puberty, even though she did not start her periods for another 2 years. I think it was from whatever we contracted in that house.
Our symptoms were the lesions (I had the lesions, she did not at first, I was hoping that she had not contracted since she didn't have the lesions), flu like symptoms, crawling sensations, ringing in the ears, lethargy, vision changes, mental confusion or brain farts we call them!
After going to a least one dozen doctors, universities, emergency rooms, etc & getting nothing but ridiculed & told I was crazy ~ but I did not get one referral to a shrink?? I could never understand that, I thought maybe I am crazy, but no one of those doctors would refer me, I was willing to try all aspects to see if someone would have the answer. Besides they can cure crazy, right? I remember one dermatologist I went to, this was 2 years after contracting, I had an open sore on the top of my head the size of a silver dollar that would not heal & was painful, the doctor looked at my head & told me "When I saw your symptoms on your chart I thought it would be eczema"; which made me think why was he diagnosing me before he even set foot in the room? Was he trying to cut a few minutes off the appointment to be able to see more people every day? Anyway he did a biopsy on the lesion on my head, that was pleasant, when he had to numb the area! On my follow up appointment he said the pathology report said I had hyperkarotosis, which means thickening of the skin. Ok, so what causes this and what treatment do we start?
He proceeded to tell me there is no treatment he can recommend, he does not know why I have this and cannot recommend where I should go from here. In other words ~ I don't know, I don't care & leave.
After that particular visit I remember crying in my car in the parking lot ~ praying I was crazy & hoping this was just a nightmare that would end soon. It just kept getting more & more unbelievable. My family didn't believe me, thought I was a drug addict, the doctors didn't believe me, my friends stopped seeing me, my daughter was suffering from Grand Mal seizures & would be taken to the hospital regularly for uncontrollable seizures.
Life genuinely sucked at that time of my life!
We moved in with my Mom for about six months to be able to save enough money to get our own place. I got a full time job, front desk clerk in a busy hotel. That had to have been the most physically challenging time for me, to stand on my feet for 8 hours straight, I maybe got to sit down 2 times a day, in Arizona, a lunch break is not mandatory. Working full time, caring for my daughter, still going to doctors to try and find out what this is & trying to hide the lesions from everyone at work was really hard. I am surprised I did it, especially since the uniform I had to wear for work was longed sleeves, we had the option to wear short sleeved in the summer, being as it gets up to 115 - 120 degrees here in the summer, I had to choose the long sleeved to hide the lesions.
That was in 1996 -1999. In 1999 I went to another doctor & he suggested I try the Atkins diet, my daughter & I have been overweight since all this started too. I tried the diet, lost 20 lbs & actually felt really great! Most of the symptoms were gone, all except the thickening of the skin around my toes & fingernails. That is how I knew it wasn't really gone.
From July 1999 to the present we have lived in our own townhouse, my daughter still has seizures and she just recently, within the last 2 months, now has lesions on her lower legs. I have also seen my health going down hill in the last year. I am losing bone density, according to my yearly scans, my vision is markedly worse, I went from not wearing glasses to having to wear bifocals! We both have labored breathing at times, I am having a re-activation of Epstein Barr Virus, which according to my doctor is something I have had in the past. I don't remember every having mono. We are still searching for a doctor to listen to us.
We will continue to keep looking, because the one thing I have learned from this is "I AM NOT CRAZY!"
My daughter was born with brain damage due to having a stroke while I was carrying her. She had seizures as a small baby, but had a shunt placed in her head and the seizures had stopped and she did not have to take any anti-seizure medications.
Her seizures began about 3 months after leaving the rental house from hell. She had Grand Mals & has been on numerous & high doses of medicines. None seem to work very well. She was 10 years old when her seizures began again. Her doctors tell me the onset of her seizures is due to puberty, even though she did not start her periods for another 2 years. I think it was from whatever we contracted in that house.
Our symptoms were the lesions (I had the lesions, she did not at first, I was hoping that she had not contracted since she didn't have the lesions), flu like symptoms, crawling sensations, ringing in the ears, lethargy, vision changes, mental confusion or brain farts we call them!
After going to a least one dozen doctors, universities, emergency rooms, etc & getting nothing but ridiculed & told I was crazy ~ but I did not get one referral to a shrink?? I could never understand that, I thought maybe I am crazy, but no one of those doctors would refer me, I was willing to try all aspects to see if someone would have the answer. Besides they can cure crazy, right? I remember one dermatologist I went to, this was 2 years after contracting, I had an open sore on the top of my head the size of a silver dollar that would not heal & was painful, the doctor looked at my head & told me "When I saw your symptoms on your chart I thought it would be eczema"; which made me think why was he diagnosing me before he even set foot in the room? Was he trying to cut a few minutes off the appointment to be able to see more people every day? Anyway he did a biopsy on the lesion on my head, that was pleasant, when he had to numb the area! On my follow up appointment he said the pathology report said I had hyperkarotosis, which means thickening of the skin. Ok, so what causes this and what treatment do we start?
He proceeded to tell me there is no treatment he can recommend, he does not know why I have this and cannot recommend where I should go from here. In other words ~ I don't know, I don't care & leave.
After that particular visit I remember crying in my car in the parking lot ~ praying I was crazy & hoping this was just a nightmare that would end soon. It just kept getting more & more unbelievable. My family didn't believe me, thought I was a drug addict, the doctors didn't believe me, my friends stopped seeing me, my daughter was suffering from Grand Mal seizures & would be taken to the hospital regularly for uncontrollable seizures.
Life genuinely sucked at that time of my life!
We moved in with my Mom for about six months to be able to save enough money to get our own place. I got a full time job, front desk clerk in a busy hotel. That had to have been the most physically challenging time for me, to stand on my feet for 8 hours straight, I maybe got to sit down 2 times a day, in Arizona, a lunch break is not mandatory. Working full time, caring for my daughter, still going to doctors to try and find out what this is & trying to hide the lesions from everyone at work was really hard. I am surprised I did it, especially since the uniform I had to wear for work was longed sleeves, we had the option to wear short sleeved in the summer, being as it gets up to 115 - 120 degrees here in the summer, I had to choose the long sleeved to hide the lesions.
That was in 1996 -1999. In 1999 I went to another doctor & he suggested I try the Atkins diet, my daughter & I have been overweight since all this started too. I tried the diet, lost 20 lbs & actually felt really great! Most of the symptoms were gone, all except the thickening of the skin around my toes & fingernails. That is how I knew it wasn't really gone.
From July 1999 to the present we have lived in our own townhouse, my daughter still has seizures and she just recently, within the last 2 months, now has lesions on her lower legs. I have also seen my health going down hill in the last year. I am losing bone density, according to my yearly scans, my vision is markedly worse, I went from not wearing glasses to having to wear bifocals! We both have labored breathing at times, I am having a re-activation of Epstein Barr Virus, which according to my doctor is something I have had in the past. I don't remember every having mono. We are still searching for a doctor to listen to us.
We will continue to keep looking, because the one thing I have learned from this is "I AM NOT CRAZY!"