it has gone up to $150 since then.
Now that I remember I paid $150. The facility in San Diego wanted $400. I can’t remember how much Monell charges. I was in a hurry to get it done, and UC had the fastest turnaround time. I was trying to save my job, but even the 3 weeks UC took was too long, and I was terminated.
I’m sorry to hear that, I never been terminated… I have thoughts that I
gonna lose my job and not get another one due to this… Hang in there, I
will be praying for you. Can you tell me a little more about the place where
you got tested… and thank for the information on the soap.
Penelope
Essay question for everyone:
people on these boards are always saying that they think about ending their life. and everyone always jumps in and says, "no that’s not the answer!!"
Do U think this is just because, suicide is seen as a horrible thing in our society? Or do U think these people really believe that life is worth living ‘this way’? Do U think that people are just afraid of the other side? or do U think they really have hope??
Is it that suicide is just too disturbing a concept? Or do people really believe that, after failing again and again, there is actaully some way to obtain relief.
And lastly, if it was determined once and for all that there really is no relief, would these Optimists still try to deter people from ending their suffering?
your thoughts…?
Hey all,
My daughter (13) had the first incident of VERY STRONG, SUDDEN and BRIEF fishy smell two weeks ago.
Yesterday it happened the second time. The smell is so strong but each time very brief, that is, before we noticed, her body smells normal, but the room is left with very strong smell. Is that the sign of TMA, or is it a sign of a more frequent occurrence in the future? Any ne had similar experiences?
Thanks
A worried farther
Hi,
You need to make a note of her diet and were is the smell coming out of her breath,underarm,urine,It’s really loud when a female is on her menstrual cycle .Make a note if this side effect occur after she eats fish potato beans corn popcorn rice tomato potato chips herbs or spices beverage.If so has she been tested for tmau we’re you located?We’re here for you their allot of knowledgeable people in this group.I pretty sure that you’ll receive some good feedback.
God Bless,
Valerie
You should have your daughter tested.? Is she aware of the smell?? Are the kids making fun of her?? Like someone else said, the arrival of a woman’s period can make odor much worse.? SOme women ONLY have smell just before and during their period.? The odor is described as VOLATILE, which means it can get around a room but not necessarily smell on the skin.?
We just contacted Dr. Preti to order a home test kit yesterday.
Her first incident happened one day before her period (she is 13). The second time (2 days ago) is not close to period yet (according to her mother). we did not eat much bean, but eggs yes.
The incident has not occurred in school yet. That’s the biggest worry we had.
Yes she can smell the smell in the room after each incidence.
- K
Maria,
Your immediate family does not know because they have gotten used to the
smell and cannot smell it. Some percentage of the other people you know may
not be able to smell it however some can. Just because you smell does not
mean all your friends and relatives will drop you. Some may. some will not.
You have to take the chance.
I recently started working with someone who has bumps all over her face. The
first thing she did after introducing herself to me was to show me a book
with pictures explaining her medical condition.
This was the best approach I
have ever seen some person with an ailment take. Education seems to help
alot. Everyone probably already know you problem. They just do not know how
to deal with it. Find some literature and quitely go to each of them in the
right time and explain. I hardly notice the girls bumps anymore. I guess you
get used to it just like smells.
The worst thing you can do is reject the world first, so they won’t reject
you. Some people want to be your friend even if you do smell because they
like who you are.
For the others, have literature ready, most people are ashamed of
theirselves after you explain. Wouldn’t you be!
Everyone has problems, that is what most people do not know. And everyone
tries to hide it from everyone else. I was recently told a story about an
old woman who was stopped before she got into her car and yelled at for
parking in a handicaped spot. She was told that only crippled people should
use such spots.
The lady went home happily and as she was taking both of her
prosthetic legs off told her husband about the incident. They laughed about
it and the woman marveled that she had mastered her new legs well enough to
be thought of as normal. The point being that we all suffer in different
ways.
It is learning to deal with the problem gracefully that we seem to win
and overcome. The lady with no legs was accepted in the community. Because
she found a way to live, not hide out and become bitter. That is what we all
need to shoot for no matter how much and how many times we are hurt.
Wounded Walking
Thanks so much Maria.
I have so many questions regarding TMAU. If it is gene related, why the symptom did not start before in her whole life? it has to mean that other factors such as hormone or other factor. Remember she eats same food a before. If it is related to hormone, then why it is “not curable”?
- K
It is a genetic issue. We are missing an enzyme that processes choline. I
was diagnosed at 56 with no history. It appears that what prompted me to
become symptomatic was a severe hormone deficiency coupled with extreme
stress. It can happen at any time. Sometimes girls show symptoms when they
start having periods. Babies can show symptoms, and sometimes women don’t
have an odor until they start menopause.
I’d like to know: How many people vigorously exercise
everyday – enough to sweat? Is there anybody who is
truly athletic out there who has this condition? I
know my sonddition is made better when I exercuse for
a few days. But, then I give up. Just wondering…
Matt,
Have you looked into hyperhidrosis or bromidrosis? Especially since you mention sweat,it could be that and not TMAU. Worth looking into.
Shania
Thank you Maria, I have to find someone who will prescribe the probiotics
and supplements – do you know anyone in Maryland, Wash, DC or Virginia?
Joyce
Your word resonate with me. I wish I had answers. It is wise to "forgive"
yourself; especially as you have done nothing wrong. It is not our fault.
Joyce
PS Susan Tjoa at UC is very good to work with. She will send you the choline to mix with a beverage. The test entails taking urine specimens over 24 hours, freezing each container separately, packing them in dry ice and shipping to UC.
Dear Maria,
You write so eloquently and with such wisdom! I will take your advice.
Well, my daughter (will be 13 soon) have got her urine test back.
She is definitely positive and on severe side of the spectrum.
Her TMA to oxidized-TMA conversion rate is just 30%. Dr. Preti
has sent us a diagnosis letter. We will try our best to help our
daughter to live with it.
Keh
Maybe a nutritionist can help her plan meals to minimize symptoms. I am sorry for your daughter and your family.
This opportunity is available to everyone who has tested for TMAU in the
U.S. and got a positive test result. Please read on and please contact the
doctor directly (if you don’t get through, please leave a message and he’ll call
you back asap). Dr. Alfardan is affiliated with the UDHSC lab managed by the
lovely Susan Tjoa who many of us know because she assisted us in getting
tested. If chosen to participate, you’ll need to have a copy of your urine test
results and, if you’ve misplaced it, you will be able to get a copy from that
lab or from Drs. Preti, Cashman or whomever did the testing for you.
FYI, If you live in the U.K. or Europe, a similar study is underway at
Sheffield Children’s Hospital in Sheffield,U.K. You will need a referral from your
G.P. before contacting Nigel Manning regarding getting your blood analyzed.
If all who can will step forward and participate, our dream of finding a
cure will be realized sooner than later don’t you think?
Good luck,
Ronnie