I am in my early thirties and I think I have TMAU. I live right outside the Washington DC area, so if anyone has a physician around this area, would you please let me know.
I have a problem where everyone reacts when I talk close to them and offers me gum. I am at the point where I just do not want to talk to anyone close anymore. I can see the reaction on their face when they smell my breath.
Any help would be appreciated.
My user name is ladon. I had a problem with body odor for 20 years.
My question is"what blood type do we all have?"
I am O negative and what are you?
Stinky, I live in Richmond VA, but I am a native of Louisiana.
Has anybody had a positive result with the use of antibiotics i have but meat out but cant live veg and fruit
I live in Richmond VA, and there is at least one other person in MCV’s records who received counseling for TMAU relief. The strong odors come from my breath, urine, and sweat as well. Unfortunately I can not recommend a specific physician. I see at least four different specialists who are willing to “experiment” with my symptoms separately - two dermatologists for my extremely oily skin and hyperhidrosis, an endocrinologist, a general practitioner, and a gynocologist. I had to provide TMAU information to all of my doctors except one. The human geneticist at MCV knew the basics of TMAU, but she would only recommend lifestyle changes to me and was unwilling to prescribe any meds.
Yesterday, joebel wrote:
I am in my early thirties and I think I have TMAU. I live right outside the Washington DC area, so if anyone has a physician around this area, would you please let me know.
I have a problem where everyone reacts when I talk close to them and offers me gum. I am at the point where I just do not want to talk to anyone close anymore. I can see the reaction on their face when they smell my breath.
Any help would be appreciated.
I also live in Richmond, and my endocrinologist works with the geneticist at
MCV. I agree that you are kind of “on your own” with this disorder. My PCP
had never heard of it, but she trusted my instincts and helped me with
research. There are no testing sites close to this area as far as I know.
Preti at Monell is the closest. I take a medication for the anxiety I feel
when around other people.
Kathi, have you ever spoken with Patty who also lives in Richmond? I would love for the three of us to “compare notes” one day. I use Effexor XR 75 mg once daily, and it helps greatly with my anxiety and depression. I’m now also trying Lybrel since the worst TMAU time was during my cycle. What else have you tried or currently use?
Thanks for the information.I will look further into the Monell Clinic. I do not have an issue with depression or anxiety. I get bothered by peoples reactions, but I do not let it stop my life. I actually have a job where I have lots of interation with people, so that is a challenge.
Luckily, I have a strong people skills, so I think it helps make up for the smell. I just wish I could reduce the odor. Thanks
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…
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.
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.
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
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
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
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.
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
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
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
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.
Hi i always notice it gets worse when i eat kfc chicken does it matter how you call the poultry