Re: Has anyone tried the NIH recommended treatment for TMAU?

Hi Jenny C

The actual treatment recommended by the U.S. Nacional Institute of Health (NIH) is short-termed in that the activated charcoal is to be taken for 10 days, the copper chlorophyllin for 3 weeks, and if you use the Antibiotics , only for a short time as needed, and the laxatives hopefully not to frequently but ongoing. Now the Vitamin B2 doesn’t have restrictions as to the length of time, but I wonder if you need such a high dose for an extended period of time.

Actually, this regimen is intended for people who have an incurable disease called trimethylaminuria (TMAU), which is a rare disease in which the liver doesn’t produce enough FM03 (enzyme), if any at all. The consequence of not having this liver enzyme is that in the final stage of digestion, choline is not broken down, and the undigested remains, the TMA, stays in the gut and smells terribly. Sometimes it smells like rotten fish, or burnt rubber, or spoiled garbage. The TMA is absorbed from the intestines into the bloodstream and comes out in all bodily secretions like the saliva, sweat, urine, mucous membranes, etc. Therefore, this diet is intended to reduce the choline intake to minimize the TMA left in the gut, to then neutralize the odor of TMA with charcoal (which is never absorbed into the bloodstream), with chlorophyllin ( a deodorizer), and periodically, the gut is cleansed with a mild laxative to get rid of any residual TMA.

This is why it’s important to be tested to see if indeed you have TMAU in order to determine whether you should stick to a low-choline diet for the rest of your life. My son has not yet been tested, but he tried this treatment, and it worked for him. Apparently, it also worked very well for Marx, who was diagnosed with TMAU. Since this may be an indication that my son has TMAU, then he knows that he has to get tested for it as soon as he can afford it.

After he finished doing this regimen and he stopped taking the charcoal and chlorophyllin, his odor began to come back slowly but surely even as he stayed on the low-choline diet. So, he came up with a modified version of this regimen based on trial and error, and he called this one his long-term regimen. Marx and others in this forum have suggested additional supplements and foods to restore the gut to a healthy state for the long-run.

Here's the exact SHORT-TERM TREATMENT and LONG-TERM TREATMENT that has worked for my son:

Under
http://www.genetests.org/query?dz=trimethylaminuria,
Gene Reviews, Trimethylaminuria, scroll down to Treatment of Manifestations, you’ll get the exact dosage and length of time of treatment to get rid of the extreme odor that is emitted the skin, breath, urine, saliva, and any other secretions. My son and I call this the short-term treatment because it’s prescribed for only for a certain amount of time.

SHORT-TERM TREATMENT FOR EXTREME ODOR
1. Low choline diet (According to the Institute of Medicine, National Academy of Sciences USA 1998, the adequate daily intake of choline is 550 mg for males and 425mg for females for adults) I don’t know if this also applies to people with TMAU. I guess it depends on how much FM03 you produce.

2. Activated charcoal: 700 mg twice daily for 10 days.

3. copper chlorophyllin: 60 mg three times a day after meals for 3 weeks

4. Vitamin B2 (riboflavin): 30-40 mg, three to five times a day with food to enhance the function of whatever FM03 your liver might still be producing

5. a short course of Antibiotics , NEOMYCIN, AMOXICILLIN, OR METRONIDAZOLE to modulate or reduce the activity of gut microflora, thus suppressing the production of trimethylamine (TMA)

6. Laxatives, such as lactulose, to decrease intestinal transit time may also reduce the amount of TMA produced in the gut

7. Replace the lactobacilli, also called the “friendly bacteria”, (L. acidophilus, and L. rhamnosus, B. lactis, Steptococcus thermophilus, and/or L. Bulgaricus) after cleaning out gut (recommended by The Trimethylaminuria Foundation in N.Y., based on other professional sources).

8. use acid soaps and body lotions with a pH factor of 5.5 to 6.5. Trimethylamine is a strong base (pH 9.8) that needs to be brought back down to a normal skin pH of 5.5 – 6.5.

LONG TERM, ONGOING TREATMENT THAT WORKS FOR MY SON (he came up with it himself based on trial and error) Now we just have to see how it works out on a long-term basis.
1. Low choline diet
2. Vitamin B2 (riboflavin): 100mg in the a.m. and 100 mg. in the p.m. daily
3. Activated charcoal: 500mg in the a.m. and another 500mg in the p.m. daily
4. cooper chlorophyllin: 200mg in a.m., and 100mg in p.m. daily
5. laxatives as needed, immediately followed by lactobacilli (acidophilus) replacement. NOTE: MUST BE KEPT REFRIGERATED OR THE BACTERIA DIES AT ROOM TEMPERATURE, and then you’re really not replacing the friendly bacteria in the gut.
6. Always use acidIC soaps (preferably with Sea Salt s) and body lotions
with a 5.5-6.5 pH.
7. NO Antibiotics unless absolutely necessary.

In other words, I think the prescribed dosages recommended by the U.S. National Institute of Health intends to do a major “clean-up”, to get you odor free. Afterwards, I guess it’s up to you to find your own balancing act to maintain your odor-free condition based on the amount of FM03 your liver’s produces, if any. My son believes that the less you take with the desired effect, the better, and I agree.

Hope this helps you.
mpdela
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