How to counteract the fish smell from Carnitor

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Hello everyone

As you may know, one of the side effects from carnitor is a fish like smell in bowel movements, urine, and sometimes body odor. After searching for a way to get rid of this, I found an article by Dr. Winter the Director of Genetics/Metabolism at the Valley Children's Hospital in Madera, Ca. I tried her recommendation and it did work!!

Here is a "retyping" of the article:

Oral L-carnitine is poorly absorbed when taken orally, with about 75% excreted by the bowel. In about 7% of individuals, the normal bowel flora metabolizes the unabsorbed L-carnitine into trimethylamine which smells like rotting fish. The absorption of this bacterial metabolite results in the patient smelling similarly. This can be extremely obnoxious and often results in patients stopping needed therapy or leads to serious social acceptance problems.

We have had succress in treating our patiens with Metronidazole in low doses to alter the bowel flora: this results in rapid disappearance of the odor. Metronidazole is available as a tablet of 250mg or a capsule of 375mg. In patients under 20kg, we use 1/2 of a 250mg tablet or 1/2 of a 375mg capsule once daily orally for 10 days. Over 20 kg, we use a 250 mg. tablet or a 375 mg. capsule daily. Since Metronidazole has a terrible taste, the capsule has been the preferred form of dosing. Parents open the capsule and mix the contents into apple sauce or a concentrated juice. Occasionally, the body odor returns requiring a repeat course of therapy. In a few patients, usually those on large doses of L-carnitine, once daily adminstration has been necessary for years.

My son had the fish smell in his bms, urine, and pores. We had him on the Metronidazole for 10 days the beginning of Sept. and we are just starting to now notice the smell starting up in his bms again. (Not in the urine or pores yet) So for him, it worked for about 4 months. I am waiting for the smell to get more distinct/noticeable and then I will do a repeat course of therapy. I hope this helps!

Sincerely,

Bridget

Mom to Owen, suspected Mito/PDH, will be 3 on 12/30, and , 7 1/2 months developing well--crawling, sitting, standing, babbling and getting ready to cruise soon! Praying he will be ok