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Allergy Community
This patient support community is for discussions relating to airbourne allergies, eye allergies, shots, anaphylaxis, asthma, children's allergies, hives, insect stings, rhinitis, sinuses, and allergies to drugs, foods, and pets.
I am getting the urine test done because I wanted to see the levels of TMA I am producing, but I guess I should also get the blood gene test since they aren't testing for sulfur compounds. A person on my website (HH - that you might want to theorize with about things because he also researches and talks about FMO3, dysbiosis, and sulfur. His screen name on my board is "Rhett" if you want to talk him) wrote: "My other thought was that the FMO3 enzyme processes a lot more than TMA. I think it's the favored path of 6-atom soft nucleophile blah blahs that contain sulfur, phosphorus, or nitrogen. Maybe TMA itself is a small occasional part of the problem for most of us (due to low numbers of the bacteria), whereas the other endotoxin compounds that prefer the FMO3 pathway are more the problem. So FMO3 enzyme deficiency would be the problem, with TMAU being mostly only a sign."
Anyway, I went to HBRI (it's only 15 minutes from my house!) to pick up my test tube for the TMAU test, and Chamile (who was on the Tyra Banks show for TMAU) showed up at the same time! I thought it was her but I didn't say anything. We both went into the office together and the man that was in there (the research guy?) got up and gave her a huge hug and was like "Welcome!" and they talked for like a minute, then the man said to me "and what are you here for?", I said that I needed to get tested for TMAU. He had me take a seat at this desk and called the girl on the phone to come. I sat there waiting for a couple of minutes when Chamile came up to me and gave me one of those "help us find a cure" bracelets (like the yellow Lance Armstrong ones) that was for Trimethylaminuria. We talked for like 20 minutes! She said "so you think you might have TMAU?"....and then I asked her if she has met a lot of people with TMAU and she said yes, so I said do you have time for me to ask you a few questions? She said that she had time because she just got here from New York to shoot a show on TMAU. I told her that my smell was fecal and that it started at 14 and only happened in class. She said that stress could activate the smell, and that this was her case too that it only happened in class and not so much around friends and family. She said that there are many variations in which the smell be, that's why they don't call it "Fish Odor Syndrome" anymore. Then I said that the smell completely went away for 3 years after I cut out dairy and then came back in college. She said this could be because of stress. Then I told her about people being allergic to me and she said that she has never heard of that, but is an inexperienced person to ask. She said to email: ***@**** to talk to this lady (I forget her name) who knows a lot about TMAU and has dealt with many people who have it, she might have heard of this, and if she hasn't, Chamile said that she is very thorough and will find the right person for you to talk to. I think we should all email this person and tell her about us (and definitely ask/talk about the coughing/sneezing issue). Rhett, I think you should send her a nice long email with all of your information/questions/concerns on FMO3 and sulfur and bacteria and what not. Everyone should email her though, and don't forget to tell her to look at this message board.
Anyway, Chamile mentioned that she takes probiotics everyday because a healthy gut flora will reduce the smell. I told her about my candida and she said that A LOT of people with TMAU have candida. I asked her if her symptoms are under control and she said that by all means it could come back, but with probiotics and a low-choline diet she has not had a comment about her odor in a whole year. I thanked her and she gave me a big hug.
I have also been going through this hell for the last 5 years - I somehow trigger allergies in others. I just knew there were more people with this issue and now I have found you guys.
Is this forum still active? It would be really helpful to exchange ideas with everyone and help out each other in solving this baffling problem.
I don't think there is an odour issue here. whatever it is, I think that in my case it is odourless, but it is making people sniffle, cough to clear their throat and sneeze as if they were surrounded by dust.
I have believed for the last few years that my problem was having been exposed to mould. But after reading your comments, I think it may also be gastrointestinal as I've ahd problems with this in the past.
Is this forum still active?
I appreciate the honesty I have read from several different pages of those who suffer with this health condition. I am the wife of a youth pastor, and I can’t tell you how difficult this has made my life. When I spoke to my husband about my suspensions he thought I was being overly sensitive. But that’s okay, I totally understand. I’m just thankful that he doesn’t seem to notice the smell. Which brings me to my first point, not everyone can smell you. In my case, it’s seems as thou people who have animals, those who smoke, the elderly (at least some of them), and people who take allergy medication are not bothered by me. They will still sneeze and/or cough, but they don’t seem to back away from me. So needless to say, my ministry is to the elderly. You will notice the people who stay away from you. Take notice of those who enjoy your company.
This nightmare began seven years ago. The smell came first, then three years later the allergic reactions started. I can’t tell you how many times I have prayed for healing and how many avenues I have taken to stop this madness. After four different doctors I had just about given up hope. I think I have learned more on my own then with their professional opinions. Which bring me to my second point. As others have stated, I too believe this is some sort of problem with the way we process bacteria in our bodies. I too have a white coated tongue. If there is a Chemist out there maybe they could figure this thing out. But I have noticed over the years if I eat a large amount of fruits and vegetables each day, that are high in Vitamin C the coughing and sneezing dwindles. I'm sorry to say, I have used my co-workers to experiment with. :-( Vitamin C in the pill form or capsule doesn’t seem to be affective with me. Fruits like blueberries, fresh pineapple, and Welch’s Grape Juice seem to work the best with me. (And no, I don’t work for Welch’s) I think this will possibly help those of you who have stated you have noticed the allergies, but didn’t believe there was any odor. Maybe we are dealing with two separate problems. I don’t know, I’m just a country girl trying to figure out what’s going on. As others have stated, I have noticed that meats especially beef and pork seem to make it worse. Caffeine drinks and sweets do the same. There has been some who have suggested that drinking plenty of water helps, but in my case the coughing and sneezing seems to get worse when I’m drinking sizeable amounts of water. Now if I’m eating items high in Vitamin C while I’m drinking the water, it’s okay. Again, I agree that distilled water is the best water source for us to be drinking and we do need to drink at least 40oz a day - in small portions, of course.
I hope I haven’t rambled, but I did want to say one more thing. Before this began, I was very confident in myself. As you well know, this health issue has humble me in ways I could have never imagined, and has opened my eyes to those around me who are hurting. I can see the pain in their eyes. Those who are not outgoing, those who are not perfect! To me in a strange sense, it’s a gift, a path I would never have chosen for myself. We get so caught up in ourselves and our needs, that most people don’t see the suffering happening all around them. If you can be a help to someone around you, let me encourage you to take the extra step and offer them the help you are now seeking.
cursedtoo
1) I agree with cursedtoo, that we need to find a medium or forum where our communication is more effective and will allow Q&As. Finding this forum was a blessing and relief because it confirms that we are not going through this alone and because we can get ideas from each other. However, the medium has limitations and has not been as effective as many of us would like. Does anyone have any ideas of other forums? msn messenger perhaps? Should we open a chat room in yahoo so we can talk in real time with each other? Please provide your ideas.
2) For the last 4 years, I have suspected that my condition was related to exposure to mold. I even suspected that my clothes or my hair may have been the culprit. Have you all been able to rule out your clothing and hair?
3) As far as solutions go, I see that a lot of people have mentioned probiotics, exercize, healthy diet and relaxation techniques.... has this worked?
4) I am disappointed to think that some may have found a cure or a bearable relief and have gone with their lives. I think that if any one of us should find a cure, we should remain commited to those that are still struggling. that is, come back here once in a while to report what is working for them.
5) for those that are demoralized, I encourage you to come back. perhaps if we present our case united, we may get the attention of researchers in this area.
6) Some people have mentioned that they want to find a doctor that BELIEVES them. i personally think this is a waste of time. We need to find doctors that will take this into consideration and look for evidence. In other words, to believe our condition a doctor would have to SEE IT to BELIEVE IT. Hey, I mean if I was not going through this myself, I would find this hard to believe.
I have notice with my self, I feel clogged nose on one nostril or the other but not both. I think my body is trying to protect me from the allergens I emmit.
I also feel stomach discomfort all the time. I believe this is not cause by a virus, because it takes time for a virus to invade a host. In our case, other people feel the discomfort immediately. It seems like we are emmiting some sort of chemical that stimulates mucus production.
I am not sure about this, but somehow the symptoms seem to decrease in my case.