Thank you. It's my pleasure. I was bursting with the desire to share everything I've learned about TMAU with those who need it so very much, but I was having difficulty signing into this forum. I'm glad it helped.

mpdela

Hi Spidey,

It's nice to hear from you. Please don't hesitate to ask me any questions you might have.

When my son strictly adheres to the treatment plan for a few days, he is pretty much odorless most of the time. He may need to bathe twice a day, depending on how much he has perspired in sunny Miami, or on how stressed he’s been. However, this can be said of anyone who doesn’t suffer from serious Body Odor .

This new treatment plan was posted online pretty recently, and his symptoms had begun in 2002. So at first, we had no clue what was causing it, and he underwent all kinds of medical testing – allergies, digestive, dental, etc., but none even began to address the root of the problem. At that point, his odor filled a room as soon as he entered it.

Living in Miami, our family loves to go deep-sea fishing almost every weekend, and we have always had fresh fish and lobster as a large part of our regular diet. We also ate a lot of black beans and rice with pork (also high in choline). Poor guy, this was producing the worst odor that any of us had ever experienced.

It was not until we found scientific research online that showed us that Trimethylaminuria exists, and recommended a low choline diet. After a couple of weeks on the diet, we noticed a marked improvement. He was still had a pungent odor, but nowhere near as bad as before, and he was able to keep a very good social life at school and after school as a result, although he sometime struggled with more intimate relationships, something he never had before.

It has been only recently that this treatment plan was posted on the websites I posted yesterday,
http://rarediseases.info.nih.gov
and
http://www.genetests.org.
This has truly given him a remarkable improvement. After he showers in the morning, he is pretty much odor free until the evening. Sometimes, miraculously enough, even when he wakes up in there morning, his room doesn’t smell!

We used an old Cuban remedy to eliminate odors from walls, rugs, wood furniture, and fabric on the furniture by washing them with ammonia diluted in water, and it took away all the odor that had stuck to the walls, and furniture in his bedroom and car after so many years. You just pour ammonia into a bucket of water, take a washcloth (wear rubber gloves), and gently wipe the walls, wood furniture, and you can even spray it on rugs and furniture made of fabric. It will not fade them at all, but do avoid washing leather furniture with ammonia. You can also use it inside your car. At first you’ll get a strong ammonia smell, but just let it air out for a while, and all the odor is gone! This also works for pet and tobacco odors on furniture and rugs.

Now, his odor comes back after he’s been partying and drinking all night and has a hangover the following morning, or if he breaks his diet, or when he begins to get constipated. For the first time, he just got the prescription today for the laxative, lactulose, and we hope this works better than what he was using. He tried Dulcolax, but it really didn’t clean out his intestines at all. Then, he tried rubbing Castor Oil on his lower abdomen at night before going to sleep (as opposed to drinking it), and that gave him explosive diarrhea the following morning (so be careful with that). However, THAT TOOK CARE OF THE ODOR FOR A FEW DAY! There’s much to be said for cleaning out the intestines and maintaining a good diet!

He did note a big significant improvement immediately after starting to take Vitamin B2 (riboflavin). That’s another reason we suspect that he does have TMAU. Dr. Preti already sent him the testing kit that he’s going to send back with the first $300 of his first paycheck. He starts his new job on Monday. This position was extremely competitive, and he perspired during his interviews as he was very stressed. The fact that the odor had no detrimental bearing on the outcome of his interviews is a good indicator that it is under control – at least to a significant degree. WHAT JOY THAT GIVES US!!! This is why I’m writing these posts because I want everyone who suffer so much with this to also have success!!!

To answer your question of where I purchased these supplements, I found that the local pharmacies sell Chlorophyll at a lower dose, meaning that you have to take alot of pills to reach the recommended dose of 60 mg three times/day after meals for 3 weeks. So, instead, I found the website:
http://store.thecatalog.com/2645.html,
that sells:

***Chlorophyll 100mg - 90 caps (brand NOW FOODS) for $6.48. I guess it's easier to take them 2 times a day at a higher dose than 3 times a day of the lower dose.

***They also sell VITAMIN B-2 (which is riboflavin) 100 mg 100 CAPS for $4.12.

They don’t sell activated charcoal, so I get it at my local pharmacy, like Walgreens or CVS. It’s found in the digestive aids section. The Vitamin Shoppe

http://www.vitaminshoppe.com

sells 125 tablets/250mg for $13.32 plus shipping. I think it’s cheaper at Walgreens, but I haven’t compared the strength of each tablet.

The Antibiotics and lactulose are prescription medicines. These are recommended by

http://www.genetests.org

(Gene Reviews, Search for Trimethylaminuria) and

http://rarediseases.info.nih.gov

(click on Rare Diseases and Related Terms, and

http://www.nlm.nih.gov/medlineplus/druginfo/medmaster/a682338.html.


If your doctor doesn’t prescribe it for TMAU (because he/she is not familiar with it), maybe he will for Acne (if you have this) and for constipation. Be creative, but get it done!

See my posting dated 2/20/2008 (at midnight hours) for the government recommended treatment plan for TMAU if you haven’t seen it yet.

Also, please see the posting I just did today dated 2/20/2008 at 10:36p.m. Subject: DON'T take VIT B50 and ACIDOPHILUS (probiotics) and GET TESTED FOR TMAU.

I hope this info helps you. Good luck,
mpdela

Hi Hadenuff29,

I don’t think so much that you’re being rude to me, but rather I fully understand that you’re coming from a painful place, and I don’t blame you for distrusting a stranger. I am confused when you say that I can potentially make some money for selling a product because I don’t know what product you may think I’m selling?

I don’t know if you’ve noticed, but I am most certainly not a frequent user of a forum setting. In fact, this is the first time I’ve ever joined one. Just last night, I privately wrote ATA asking her about how the whole thing works. Spiderman22 had sent me a private message a few hours prior, and asked me to see my inbox, and I had no clue how to do that, so eventually he posted his question in the forum – about my son’s progress, and I gave it to him.

Approximately around 1:25 a.m., after I posted detailed info about my son to Spiderman22, and when I began to write a private message to ATA asking about how the forum works, I happened to come across the rules & guidelines of this forum, and it states that all our postings can be accessed indefinitely with a google search. I sort-of cringed, and hoped that I had not divulged too much of my son’s personal info to be exposed forever. I had already told him that I had written about his ordeal to help others, and he consented because he also wants to help others. However, I felt uncomfortable knowing that his very personal information could be accessed indefinitely with a google search. I was thinking that I wish I had known how to access Spiderman22’s message privately so that I could have responded privately instead.

I didn’t get to sleep until after 2 a.m. thinking about it, and in the end, I felt that this experience HAD TO BE SHARED so that others wouldn’t suffer anymore. Perhaps it will work for other as it did for my son, and perhaps not; but how can I justify to myself and to God, that I sat on this info and did nothing at all to help others? I couldn’t, so I went to sleep, and I just woke up at 11:30 in the morning! That’s unheard of for me. Sleeping in for me is until 9:00 a.m. the latest, but this has been a draining experience for me, since I am not well in health.

In case you haven’t figured it out from my style of writing and my lack of expertise in modern technology (compared to my sons’) I am an older, retired, and disabled woman, who is selling absolutely nothing. Of my 35 years of employment, I have worked the last 30 in the travel industry – never in sales, unless you consider selling airline tickets for my employer an aggressive sales job.

The products I am discussing, chlorophyll, charcoal, etc. costs practically nothing. I could have avoided the info on soap selection in my posting, but it did take me a long time to look up the info online and to call the various manufacturers to get the pH info of each product, and I know that young people normally don’t have time to do all that, so I shared it to save all of you time. I guess I could have mentioned on my postings that you also had the option to go to the other top-of-the line, more expensive cosmetic companies to get soaps, but I didn’t think of it. I’m not selling anything myself, so I don’t understand how anyone could think that I’m pushing any particular product to make a profit?

If I were trying to spam you, I would not have said that my son has the disorder, but instead, I would have made up a story of a personal, more intimate experience, and perhaps that would not have raised your suspicion. However, none of that would have been true, and then it would have been cruel to deceive and mislead others based on lies.

Believe me, I am not telling you or anyone else that you will be healed, or that the government websites’ suggestions will work for everyone, I’m just stating that it did work for my son – to the degree that it has, and that I hope it works for you. Mind you, I never said it is a miracle cure for him or anyone else – something a spammer would probably insinuate one way or another.

I’m sorry if I have offended you, or threatened you in any way, it was never my intention. Other people seem to trust the National Institutes of Health (NIH) website, MedlinePlus Health info from the National Library of Medicine, and whatever other official website I might have referred to, so maybe they are grateful that I directed them to take another look at it.

I also believe that most of the readers of my posting are intelligent enough to arrive at their own conclusion on whether it is beneficial to them to even try this plan, considering the source. However, KEEP IN MIND THAT I HAVE MENTIONED IN MY POSTINGS THAT ONE SHOULD BE TESTED TO GET AN ACCURATE DIAGNOSIS to not be wasting your time with a treatment plan that does not apply. I’ve also made it perfectly clear that my son has the intention of being tested himself as soon as possible.

I wish you the best of luck, and I wish you peace.
mpdela