Here's the exact SHORT-TERM TREATMENT and LONG-TERM TREATMENT that has worked for my son:
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- Jessica Miller
- 6 years ago
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1 How my son cleansed his body odor (since January 2008) Page 1 of 6 The management protocol for TMAU, D=6447#78,recommended by the U.S. (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. This TMAU odor-management protocol 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 TMA is absorbed from the intestines into the bloodstream, and again without the FMO3 metabolic enzyme, the odorous TMA is not further metabolized, 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 and which adsorbs ammonia), with a deodorizer chlorophyllin (which some people can t tolerate well), and periodically the gut is cleansed with a mild laxative to get rid of any residual TMA in the gut (NIH recommends lactulose, because it adsorbs ammonia). After my son finished doing this protocol 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. This approach may not work for everyone. This paper is a testimony of what worked for him. Here's the exact SHORT-TERM TREATMENT and LONG-TERM TREATMENT that has worked for my son: Under 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. See the 2 posts in my blog for the short term treatment,
2 PART I: and Page 2 of 6 PART II, Questions and Answers: 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 suppose it depends on how much FM03 you produce. The U.S. Department of Agriculture, Nutrient Data Laboratory, Agricultural Research Service has posted online the following pdf file, the USDA Database for the Choline Content of Common Foods: It is the most comprehensive list I've found, although it lacks info of a lot of foods, especially ethnic foods. 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): mg, three to five times a day with food to enhance the function of whatever FM03 your liver might still be producing 5. Suppression of intestinal production of trimethylamine: A short course of antibiotics to modulate or reduce the activity of gut microflora, and thus suppress the production of trimethylamine. Such treatment may be useful when dietary restriction needs to be relaxed (e.g., for important social occasions), or when trimethylamine production appears to increase (e.g., during infection, emotional upset, stress, or exercise) Antibiotics recommended for trimethylaminuria to suppress production of trimethylamine by reducing bacteria in the gut: neomycin (500mg tabs 1 tablet every 8 hours for 7 days) appears to be the most effective against the bacteria in the gut that actually produce TMA from the choline in the food. This kills off most of the remaining microflora after the gut cleansing with lactulose. Another sufferer said that her doctor prescribed it for 30 days. NOTE, that you would need to be replacing your gut microflora with
3 Page 3 of 6 probiotics (the good microflora) to re-populate the gut with the proper healthy microecology. metronidazole - alternate antibiotic that is selectively taken up by anaerobic bacteria AND sensitive protozoa, amoxicillin - alternate antibiotic 6. Laxatives, such as LACTULOSE [2TBP], to decrease intestinal transit time may also reduce the amount of TMA produced in the gut. (2 TB once to cleans the gut within 24 to 48 hours or as needed. Repeat if total cleansing has not occurred): decrease intestinal transit time may reduce the amount of trimethylamine produced in the gut. Be careful because you don't want to have accidents in the wrong places. Don't overdo it or you may become dehydrated with diarrhea. A simple intestinal cleansing every once in a while helps get rid of the bad bacteria overgrowth. Lactulose comes in liquid form to take by mouth. It usually is taken once a day for treatment of constipation and three or four times a day for liver disease. Your prescription label tells you how much medicine to take at each dose. Follow the directions on your prescription label carefully, and ask your doctor or pharmacist to explain any part you do not understand. Take lactulose exactly as directed. Do not take more or less of it or take it more often than prescribed by your doctor. To improve the taste of lactulose, mix your dose with one-half glass of water, milk, or fruit juice You can also use other laxatives, such as rubbing Castor Oil (an over the counter laxative) on your lower abdomen to produce intestinal cleansing. Be careful because you might produce a strong reaction, so make sure you re near a bathroom. Castor Oil can also be used as a rub-on treatment for muscle tension and sprain. My father-in-law said that in his childhood days, it was used to soften the very tough leather on their baseball catcher s glove so it is very potent on the intestines just by rubbing it on the skin. 7. [PROBIOTICS] Replace the lactobacilli, also called the friendly bacteria, (L. acidophilus, and L. rhamnosus, B. lactis, Steptococcus thermophilus, and/or L. Bulgaricus and/or others) after cleaning out gut (recommended by The Trimethylaminuria Foundation in N.Y., based and 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 LONG TERM, ONGOING TREATMENT THAT WORKS FOR MY SON (he came
4 Page 4 of 6 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 with food ( a low choline diet) to enhance residual FMO3 enzyme activity. THIS MAY POSSIBLY ONLY BE NECESSARY IF YOU HAVE TMAU AND/OR OTHER COMPROMISED METABOLIC ENZYMES. Enhancement of residual FMO3 enzyme activity with Supplements of riboflavin, a precursor of the FAD prosthetic group of FMOs, may help maximize residual FMO3 enzyme activity. Always read the lable on all products, especially Vitamin B complexes because I read in some of the bottles that Vitamin B50 that this complex also contains Choline, which is what the lack of the liver enzyme FM03 cannot metabolize during it s digestion in the intestines, and thus leaves the undigested food full of trimethylaminem which smells of fish, and is an extremely volatile odor that seeps through the sweat on your skin, especially in the groin and vaginal area, and in your breath. 3. Activated charcoal: 500mg in the a.m. and another 500mg in the p.m. daily. with food ( a low choline diet) to enhance residual FMO3 enzyme activity. THIS MAY POSSIBLY ONLY BE NECESSARY IF YOU HAVE TMAU AND/OR OTHER COMPROMISED METABOLIC ENZYMES. Enhancement of residual FMO3 enzyme activity with Supplements of riboflavin, a precursor of the FAD prosthetic group of FMOs, may help maximize residual FMO3 enzyme activity. Always read the lable on all products, especially Vitamin B complexes because I read in some of the bottles that Vitamin B50 that this complex also contains Choline, which is what the lack of the liver enzyme FM03 cannot break down during it s digestion in the intestines, and thus leaves the undigested food full of trimethyline (TMA) which smells of fish, and is an extremely volatile odor that seeps through the sweat on your skin, especially in the groin and vaginal area, and in your breath. 4. cooper chlorophyllin w/zinc: 200mg in a.m., and 100mg in p.m. daily. Chlorophyll is an ingredient that makes plants green, and they say that green vegetables are good for you. Chlorophyll is also a deodorizer in the intestines, so just the combination of both are very effective at significantly decreasing or eliminating body odor. 5. laxatives, preferably lactulose, (2 TB once to cleans the gut within 24 to 48 hours or as needed. Repeat if total cleansing has not occurred) as needed: decrease intestinal transit time may reduce the amount of trimethylamine produced in the gut. Be careful because you don't want to have accidents in the wrong places. Don't overdo it or you may become dehydrated with diarrhea. A simple intestinal cleansing every once in a while helps get rid of the bad bacteria overgrowth.
5 Page 5 of 6 PROBIOTICS daily: gut cleansing should be immediately followed by probiotics. Also, should be taken during and after antibiotics treatment. 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 acid soaps (preferably with Sea Salt and/or salicylic acid) and body lotions with a ph. Using soaps with a moderate ph, between 5.5 and 6.5. Trimethylamine is a strong base (ph 9.8), thus soaps with ph closer to that of normal skin help retain the secreted trimethylamine (TMA) in a less volatile form that can be removed by washing. 7. NO ANTIBIOTICS unless absolutely necessary. Antibiotics may repeat under a doctor s care only if odor becomes unmanageable for an extended period of time. 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. AN UPDATED NOTE (09JUN08) You have to do this protocol as you would an orchestrated symphony. It must all fit together and be applied at the correct time for it to work. My son had tried the various supplements, but not at the same dose, and the diet, but not first cleansing his intestines, etc., and it didn't work for him until all were done together. My son fine tuned this process a little, and started the process for the last time as follows. The first thing to do is to cleanse the intestines, lactulose worked best for my son. It took only a few hours the following day to clean out his gut. His doctor prescribed the (onetime treatment only) of antibiotic, neomycin, which he began taking right after the lactulose cleansed him. He started taking the probiotics, and has never stopped. He takes one a day every day because he continued the lactulose cleansing once every three weeks for a few months, and now only does it as needed. It's extremely important to not stop this protocol for at least 2 months to help your body cleanse itself out. Even though you manage to correct the altered balance of bacteria in the gut with the cleansing and probiotics, there are already old toxins in the blood that have to be excreted by the body through your sweat, breath, kidneys, and other bodily fluids and mucous membranes. Eventually, after it leaves your system, and your
6 Page 6 of 6 intestines don't continue to permeate more toxins into your blood, the odor does go away, as it has for my son. H e can't break his diet, or it sets him back a bit. It is, however, easily corrected because he doesn't have toxin build-up in his blood.
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