Educate me!

2

I am a college student writing the dreaded term paper to get into the nursing program. We were told to choose a disorder that was effected by both metabolism and genetics, and though trimethylaminuria can have various causes, it did fall within the above category. I found it fascinating and soaked up as much scientific information as possible about it, but now I feel that my paper is missing a very integral part, the personal aspect of this disorder. How does it affect your life in particular, is dating hard, is the dieting awful, is the odor noticable to you and your close family, is your job a nightmare, what treatments have you found to be the best, and what can you imagine the cure for this disorder to be like? Be encouraged, the day will come...
Thank you in advance for any information you would be willing to educate me with!

created Jul 23 '07

67 replies

0

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!

created Jul 23 '07
0

-----Original Message-----
From: stinky [mailto:Trimethylaminuria-cpt5341@lists.careplace.com]
Sent: Sunday, July 22, 2007 9:41 PM
To: joycedreyfuss@verizon.net
Subject: Re: [trimethylaminuria] Educate me!

created Jul 24 '07
0

I can honestly say that I did not put much hope in receiving contact from someone who suffers, if you will, from this condition. So I do thank you greatly for being so willing to share, and I am in awe of your story. *rubs hands together* Well, lets see, you definitely know that diet plays a big role. As you said, almost no protein whatsoever. The reasoning being, items such as eggs, fish, organ meats, even your slice of turkey breast, perhaps, contain in part choline, carnitine, and lecithin, along with trimethylamine. This metabolites are usually broken down in the body by an enzyme known as FMO3 (flavin monooxygenase 3) into a non-odorous amine known as trimethylamine N-oxide. When someone has trimethylaminuria, unless it is transient, then this means that they have a mutation of the family of enzymes (flavin monooxygenase). The term transient means, of course, that it is not a permanent state. Women sometimes notice that during the time surrounding menstruation they develop the same inability to efficiently break down the aforementioned metabolites which leads to them acquiring an unpleasant odor. This is usually not attached to the genetic and metabolic nature of true trimethylaminuria. So I am very interested in the part of your story where you make the move out to the country and all hell breaks lose basically, and the stress that surrounded the time when it first occured to you that you had trimethylaminuria. Was it present in your system from birth, as a genetic defect and it just didn't present itself because you had yet to have enough of a substrate (trimethylamine intact) overload to indicate that you suffered from it...or what? Because some people do complaint of their infants having the smell of fish to them, and it is more easily identified due to new screening. And then there are people that claim that just out of the blue they 'developed' the condition at a later age.
I really feel like I have not told you all that much about the metabolics of your condition, I guess I take for granted that you have done as much research on the internet as I have of late, for your own sake. I did find an article, actually a US patent for an invention, it was for the cloning of the flavin monooxygenase family. FMO3, the one that has the defect that causes your body's inability to metabolize foods that contain trimethylamine. This is a very good thing from what I understand, it in essence means that one day replacement of the mutated gene will be possible. I am an optimist, as I hope you are! Thank you so much again for your story it was very informative and inspiring!

created Jul 27 '07
0

You did give me new information. I am seeing a doctor tomorrow and will
give him your informative article. Thank you for giving me a voice. Joyce
Dreyfuss

-----Original Message-----
From: AustinKitten
[mailto:Trimethylaminuria-cpt5341@lists.careplace.com]
Sent: Thursday, July 26, 2007 9:31 PM
To: joycedreyfuss@verizon.net
Subject: Re: [trimethylaminuria] Educate me!

created Aug 02 '07
0

Have you found It to reduce the smell greatly or slightly or altogethor?
-----Original Message-----
From: Kathi

Date: Tue, 25 Sep 2007 16:54:51
To:aaron.tur@gmail.com
Subject: Re: [trimethylaminuria] Educate me!

created Sep 26 '07
0

Captinkid,
I can totally relate with your story, I hate standing in lines especially when i cant leave them. The looks and comments are unbearable when your on a line.

Maria

created Sep 30 '07
  • Mery
  • 10 care points
0

Anyone got any issues with your body emitting to much body heat and the immediate area or room. Reply if u can read this
Sent from my BlackBerry® wireless device

-----Original Message-----
From: TmauSucks

Date: Mon, 17 Sep 2007 18:15:37
To:aaron.tur@gmail.com
Subject: Re: [trimethylaminuria] Educate me!

created Sep 18 '07
0

Stinky,

I am blown away by your story but not supprise. I had a wonderful life and unlike like many of the others I did not grow up with it. I had been married for five years, we decided that we wanted to start a family, So, I got pregant. At first I ddn't think much about it, I thought it was just hormones but to my dismay it didn't go away after I delievered the first or my second son which was born threee years later. I notice at work that people started making comment, spraying air fresheners, and looking at me funny. I tried all kinds of soaps, spend alot of $, and cried alot of tears.

Here I am in the prime of my life and this appears. I was upset, disappointed, and depressed. Most people that I ask told me that they did not smell anything but there are other that treated me like I smelled like the back alley or a out house. I have been trying to make sense of this for nine years.

Last year I start getting clonics. I wanted to make sure my body did not have any waste trapped inside. Duing one of my session the doctor started asking me about my family history. I went home and ask my mom some question and found out some important information (operation as baby).

I was 3lbs and 9 ounces in the 60's. there was not alot of technology for premature babies. The doctors told my mom to prepare a furnal.. that is why she named me Penny. I could not pass my water and had to have a operation shortly after being born. The doctors hooked my bowels and blatter up incorrectly. They informed my mother but due to my size she did not want them to operate again so soon. The problem -- she never rescheduled the operation. It wasn't until years latter when I noticed that I had urine coming through my navel and begin to get sick that I had a operation at Georgetown University to correct the problem. That's when the doctors discover my bowel were turned incorrectly. I believe that this is a big contributor to my issue and the fact that my mom had my brother and I the same year and we are not twins. I have two other sibling before us and two in stair steps behind us. There is no way my mom body had a chance to heal having children every year and two babies within the same year.. Impossible.....

I had done alot of research on this issue and believe that this what I dealing with as a person. Nothing else make sense to me. I believe that my liver was not developed at time of birth and due to other circumstances it puts me in line for TMA.

Life has been hell at times. I have been the joke of the office and I thought I was the only one who felt like I had to out perform everyone else, show them that I'm a nice person, or that I clean. wow I been let go off of contracts and have to move to anther office. My supporting manager was please with my work, I believe it is my issue that they are not in favour of.

I am working with my doctors to be tested. I trying to eat the right stuff and it sucks. at this point I don't know what to eat. I'm trying to go organic, the food sucks....I am angry with all the adjustment that I have to make and the issue is not going away. At time it worsen for females... I'm trying to look on the bright side, at least I'm still alive.

Penelope

created Sep 16 '07
0

Thank you, we have received your message.

Quote: "Quitters NEVER win. Winners NEVER quit!"
"There is no such thing as a FREE ride"(Rosa Parks)

*15 September 2007, I had a death in my family, my responses may be delayed. Thank you.

created Sep 16 '07
0

Stinky,

I am blown away by your story but not supprise. I had a wonderful life and unlike like many of the others I did not grow up with it. I had been married for five years, we decided that we wanted to start a family, So, I got pregant. At first I ddn't think much about it, I thought it was just hormones but to my dismay it didn't go away after I delievered the first or my second son which was born threee years later. I notice at work that people started making comment, spraying air fresheners, and looking at me funny. I tried all kinds of soaps, spend alot of $, and cried alot of tears.

Here I am in the prime of my life and this appears. I was upset, disappointed, and depressed. Most people that I ask told me that they did not smell anything but there are other that treated me like I smelled like the back alley or a out house. I have been trying to make sense of this for nine years.

Last year I start getting clonics. I wanted to make sure my body did not have any waste trapped inside. Duing one of my session the doctor started asking me about my family history. I went home and ask my mom some question and found out some important information (operation as baby).

I was 3lbs and 9 ounces in the 60's. there was not alot of technology for premature babies. The doctors told my mom to prepare a furnal.. that is why she named me Penny. I could not pass my water and had to have a operation shortly after being born. The doctors hooked my bowels and blatter up incorrectly. They informed my mother but due to my size she did not want them to operate again so soon. The problem -- she never rescheduled the operation. It wasn't until years latter when I noticed that I had urine coming through my navel and begin to get sick that I had a operation at Georgetown University to correct the problem. That's when the doctors discover my bowel were turned incorrectly. I believe that this is a big contributor to my issue and the fact that my mom had my brother and I the same year and we are not twins. I have two other sibling before us and two in stair steps behind us. There is no way my mom body had a chance to heal having children every year and two babies
within
the same year.. Impossible.....

I had done alot of research on this issue and believe that this what I dealing with as a person. Nothing else make sense to me. I believe that my liver was not developed at time of birth and due to other circumstances it puts me in line for TMA.

Life has been hell at times. I have been the joke of the office and I thought I was the only one who felt like I had to out perform everyone else, show them that I'm a nice person, or that I clean. wow I been let go off of contracts and have to move to anther office. My supporting manager was please with my work, I believe it is my issue that they are not in favour of.

I am working with my doctors to be tested. I trying to eat the right stuff and it sucks. at this point I don't know what to eat. I'm trying to go organic, the food sucks....I am angry with all the adjustment that I have to make and the issue is not going away. At time it worsen for females... I'm trying to look on the bright side, at least I'm still alive.

Penelope

created Sep 16 '07
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