Wow! This is a tall order. I was eleven years old when I developed the
disorder. That was a very bad time. My mother was bipolar and my sister
and I lived with her when my parents divorced. My father was schizophrenic
and an alcoholic. In a manic summer, my mother decided to move from Grand
Rapids Michigan to a rural area outside of it and become a “gentleman
farmer” by night and weekend and commute to work in the city. Perhaps it
was best as I suppose that i would have been tortured even more in a city
school system. Anyway, I was relatively healthy in the city but developed
asthsma, severe allergies, eiosynaphilic gastroenteritis and esophagitis,
GERD, IBS, and the trimethlaminuria within a year. It was a horror! In
addition, when puberty kicked in at age 12, that odor also clug to the
breath. I became isolated not only by others, but so mortified, I isolated
myself.
My entire life changed. For instance, my mother, sister and I acquired 40
milk cows and we had to get up at 4:30 a.m. in the morning to milk them. I
was lactose intolerant and even contact with the animals made me sick. This
was too messy for my mother to handle so she told me, “Everyone has that
problem”. I wheezed from the hay, the animals, corn, sileage, everything.
most of the time I was in a dizzy haze and could not concentrate in school.
The excema was so bad, my ears discharged mucus and I couldn’t wear anything
at the knee or above and had to cover my elbows and underarms. I was a mess
for years. Not to mention my mother’s moods as she recycled about every
three days and had violent rages and paranoia. My world collapsed. She
became more and more isolated from her family. We were in bad economic
shape due to the impusivity in general and the purchase of a working farm in
particular. I remember promising myself that when I would leave home at the
age of 18, if life were not better, I would kill myself. At the age of 10,
I was a brash, up front in your face, bright little girl and by 12 I was a
little old lady recluse who couldn’t open her mouth.
High school was terrible. I did not date. Due to my mother’s paranoia, I
wasn’t allowed to go to games or socialize so I just read. I had four good
friends who never mentioned the smell to me but I heard them talking about
it among themselves. They were very kind and they saved me.
When I went to college, i noticed that not everyone was affected by the
smell equally. Some people reacted very strongly, some people only smelled
it at certain times. I went to campus doctors, none of whom knew anything
at all and were no help.
In 1970, for my junior year of college, I went to India for a year to the
Delhi School of Social Work. Due to the food and climate (and parasites), I
developed an unusual case of giarrdia which is usually cured very easily
with antibiotics. I found out that I had no immunity. I became so sick, I
developed ulceritive colitis on top of everything else. I lost 25 kilos and
had to return to the U.S. two months early otherwise I would have expired.
I married a person who was inappropriate for me and who made me miserable
because I felt that I would have trouble keeping a job and I wanted the
security. We were married for nine miserable years. It was a very hard
headed decision to make, there was little heart in it. I did it because I
had absolutely no family support either monetarily or emotionally. By then
both of my parents were completely sick and disfunctional.
Once I went to visit my paternal grandparents in Pennsylvania at their
invitation. I heard my aunt discussing what could cause such a bad smell
with my grandmother. I never let them know I heard it. Because my
grandparents had such a tough life with both of their children, I couldn’t
break their hearts with my story.
Over the years, I probably spent about $100,000 of my own money, after
insurance, on finding out the problem. I have had every test (except this
one) that you could imagine. Once a rabbi advised me to dress very well and
to be impeccably groomed at all times so that people would wonder and not
condem. I think it was pretty good advice.
Unfortunately, most of my gifts are in the people services and this problem
gets in the way. I have been fired a few times for the problem, of course,
they always say it’s from something else I did. I am a compulsive
workaholic because every time I get a job I have to do it 400 times better
than anyone just to keep it. I feel I have to be nice even if I am in agony
or abused, I have to be brilliant, creative, and driven. It has literally
taken years off my life. Only three doctors out of 60 have believed me and
genuinely tried to help me. Only two therapists in 45 years have been
helpful. I have spent so much money on doctors and medical services, and
therapists, i have virtually no retirement saved up. Eventually I had two
children who were very embarassed about the condition although they were
very sympathetic. If you come to my house, you may be willing to eat on the
floors. Everything has to be immaculate and orderly at all times because I
don’t want anyone to think that I am filthy.
My diet is very limited. Except for a bit of whole wheat and raw almonds, I
try not to eat protein. When I get a three day weekend, I splurge on a
slice of turkey breast. I don’t go out to eat with collegues or friends.
On account of the other stomach disorders, I do not eat raw fruits or
vegetables, oil or fats, spices, or caffeine. Needless to say, I do not eat
red meat or legumes, dairy products, etc. I try not to think of food.
If it were not for my love of nature and knowledge, and for the love of my
current husband, my gallant and loyal Prince Charming, life would not be
worth living for me. I am not depressed about it although I was for most of
my life. I made some bad personal and professional decisions based on it
and I have paid a price, although not too bad, considering the alternatives.
I am sad, worried, compulsive and ashamed although it is not my fault. I
have never shared all these things with anyone explicitly except you. This
is because you may be in a position some day to help someone. It is very
important not to pooh pooh this condition as at times it is better than
others or more or less with an individual and you may not sense it as
strongly as your patient’s nearests and dearests. It is heart breaking and
a big waste of life and talent. Anyone who puts up with it is a hero!
I have to stop now. I hope this gives you an idea of how it affects others
and I hope it makes you a better healer in all ways. If it is not too much
trouble, I would like you to share with me how metabolism is involved with
trimethylaminuria as I was not aware of the component.
Best wishes,
Stinky
-----Original Message-----
From: AustinKitten
[mailto:Trimethylaminuria-cpt5341@lists.careplace.com]
Sent: Sunday, July 22, 2007 6:38 PM
To: joycedreyfuss@verizon.net
Subject: [trimethylaminuria] Educate me!
