Re: Hello, I'm new and I really would like to make a friend or two.

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