Everyone offers me gum

#12

I think a list should be made of all the symptoms. At what time, when, who
with, what are. The reason the geneticist did not give you medication is
because she did not know what to give you. There is not a cure now. The
solution is for someone involved with this to find the cure. Symptoms of
fishy smell, bad breath,body winds of odor. Look for the pattern. Stress
seems to be a factor in turning on this thing. Stress of childbirth, new
job, new place. How does the body react to prolonged stress. I assume that
it is prolonged stress that brings the condition on. Under stress, what does
the body do, it sweats, it releases hormones, what else…With all of
you togeather there is a wealth of mind power. Try to put it togeather.
Think like a detective. Something is making life miserable, study it, log it
find the pattern and then tell the others. Maybe the group can stumble on
the key, what starts it off must be extended stress and
then…

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#13

I agree about the stress. My first symptoms occurred this year when I changed jobs, and I didn’t realize just how stressful it was.

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#14

Besides the varying malodors coming from our breath, skin, urine, bodily secretions, etc., I am under the impression that we do not experience the same extra “assumed” TMAU and TMAU-like symptoms. Several people in the TMAU-yahoo group have tried to find common symptoms like excessive gas, constipation, irritable bowel syndrome, extremely oily scalps, acne prone skin, hyperhidrosis, poor eyesight, discolored nails, reoccuring foot fungus, overactive bladder, etc. Of the survey results I’ve seen, neither of these extra symptoms are seen or reported from 100% of us.

Since some babies are born with pronounced TMAU symptoms and most other people notice or experience worsening TMAU symptoms around puberty, external stress is only one of the triggers. When I get stressed, I sweat more and I produce more oil; therefore I will smell bad faster than when I am not stressed. On a good day in cool and dry weather, I don’t stink until the end of my work day. On a bad day in humid and hot weather, I begin to smell bad by the time I reach work. During my cycle, I stink no matter what I do. When I consume and drink forbidden items I stink and my malodors can range from musty to moldy to sweaty to fecal. I don’t recall ever having a fishy odor, but who knows?

Although there is no cure, there are some prescription drugs recommended for decreasing TMAU symptoms. The human geneticist and hepatologist I visited were not open to prescribing any of those “experimental” drugs because they had little to no knowledge of TMAU symptoms, and some of these “experimental” drugs can cause other serious side effects in patients. I was very frustrated with both of them because neither wanted to assume the liability of prescribing something requiring extra explanations to my insurance company or to their bosses.

I’ve actually seen more open-mindedness from dermatologists, endocrinologists, and general practitioners, than from more popular internal medicine specialists.

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#15

IN addition to stress, there are genetic factors as well. In my case, there
is a lack of a liver enzyme that is only found in complicated blood tests.
Genetic predisposition, immune problems aggravated by stress seems to be the
pattern.

Stinky

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#16

Dear Martha,

Your reply is intelligent and thought provoking. I agree with your
assessment; my sumptoms are identical. One symptom that I have that may or
may not be related is the lack of a liver enzyme (possibly the one that
processes choline?). I printed your text to show doctors as needed. Thank
you for your clear and cogent response.

Joyce

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#17

I think you might have hit something here. I also have an immune problem (born with it) called Hypogammaglobulinaemia - this means I cannot fight infections very well (my immunologist thinks this may be a genetic problem but no-one else in my family has this condition or TMAU that I’m aware of)- and I’ve always wondered if it had anything to do with the TMAU - no medical practitioner has connected anything with one or the other to-date. I’ve also suffered IBS for years too.

Aggie7

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#19

I was told that TMAU is a recessive trait, and scientists believe that a TMAU-positive individual is born from two TMAU-positive parents or two TMAU-carrier parents. In other words a recessive trait like TMAU only becomes phenotypically apparent when two similar alleles of a gene are present. In other words TMAU will occur when both parents are carriers and each contributes an allele to the embryo.

However many traits previously thought to be recessive have mild forms or biochemical abnormalities that arise from the presence of the one copy of the allele - any of the possible forms in which a gene for a specific trait can occur. In almost all animal cells, two alleles for each gene are inherited, one from each parent. This suggests that the dominant phenotype is dependent upon having two dominant alleles and the presence of one dominant and one recessive allele creates some blending of both dominant and recessive traits.

You can find general explanations about phenotypes, recessive and dominant traits, and a list of recessive traits using www.wikipedia.org.

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#20

I really like your reasoning. You seem to be a very intelligent and logical
person, Martha. I don’t know where you live but maybe we could get
together. I live in Baltimore, Maryland.

Joyce

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#21

I always do better on antibiotics but they aren’t safe as a way of life as
you can become immune to their benefit. When I go job hunting or have a
family wedding, I take them to make things more pleasant, so yes, I use them
with discretion.

Secondly, you can get protein from mushrooms, kasha, wheat berries, wild
rice, and poultry. The poultry is a saver!

Stinky

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#22

I am in Baltimore. Any chance of meeting somewhere near Wash, DC? I would like to meet very much. Just to give you an idea, I am 57 years old, a female, married with children and grandchildren.

Needless to say, my husband is a saint! I have a master’s degree in early childhood education and I am a paper and book conservator; I restore books and manuscripts on a free lance basis. I used to work for The Smithsonian Institution as a conservator. In addition, I am an Orthodox Jew. My hobbies are architectual conservation, travel, reading, and psychology.

Joyce

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#23

Stinky,
I live outside Annapolis, I was wondering if you have visited any of the physicians at Hopkins about this problem? I thought I might, instead of going all the way to Philidelphia.

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#24

Hi i always notice it gets worse when i eat kfc chicken does it matter how you call the poultry

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#25

OscarMan, try to avoid fast food. KFC and other fast food restaurants may fry foods in soybean oil or peanut oil. In general fast food usually contains unadvertised additives and preservatives or ingredients that are not TMAU-friendly.

When I can not resist fast food, I limit my choices to salads with no meat, baked potatoes, or small order of fries. Some of the processed meat used on salads contains soy, and most of the salad dressings contain soybean oil. For those who do not know much about TMAU, you should avoid products high in choline or products containing soy, soybean oil, nuts, beans, egg yolk, broccoli, cauliflower, etc. as suggested by TMAU research done to date.

You can find the USDA Database for the Choline Content of Common
Foods by using http://www.nal.usda.gov/fnic/foodcomp/Data/Choline/Choline.pdf

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#26

Does any one know someone who lives in california,i suffer with tmau,and i dont leave my house,i dont work,i am poor and lonely.

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#28

This is not restricted to blood type. I am O neg. also but the real issue is the inability to metabolize choline due to a liver deficiency. Stinky

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#29

Stinky,I know about the choline and the digestive system ,but most disoders are o negative blood type.

Why?

Are we that much different from others?

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#30

Anyone in Florida with this condition?? Starting to learn about Trimethylaminuria althought I have suffered for years…now my daughter has it also and I am determined to find a solution, I have suffered enough. I have recently become a vegetarian and I seem to be doing pretty well with the diet except than I am losing too much weight and I need to add something to the diet, perhaps, poultry.

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#32

Hi brown sugar,

Thanks for your message, yes I can eat pineapples, all fruits and vegetables agree with me in general, but I can’t live with that alone. I am hungry often, I take multi vitamins, but I have lost 10 pounds in 3 months and I don’t want to lose any more or I will shrink to nothing.

I am reading about antibiotics… does it work??? anything works??? I am a single mom and I have to work for a living, I have to… I change work often… but I have already gotten used to changing once in a while… I just go and change again, which makes my life very interesting… I want something that works, not so much for me anymore, but for my daughter, she is 12… and I don’t want her to suffer like I have. By the way, what’s your story???

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#33

Hi, I am new here. I do, and I need friends. Message me. What part of Cali are you in? I travel all the time. It’s my only way to enjoy life really.

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#34

Seriously if you ever see this message even a year from now just message me.

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