Mito Cocktail
The mito cocktail is a fancy term for all the vitamins and supplements a person with mito usually takes. Doctors have mixed opinions on whether supplements actually help with mito, but since there are no other treatment options and no cure, most recommend trying at least a few supplements to see if they help increase energy, alleviate symptoms and slow disease progression.
Our doctor told us not to bother with the cocktail because it is so expensive (true) and not scientifically to actually help (also true). Additionally, because Evelyn has a mito depletion syndrome, its not like a supplement can help her body make more mitochondria. But I told him I would be damned if I didn’t try anything, no matter what a longshot it might be. (OK, I didn’t say damned. But I said I was going to try.)
I feel like we’ve seen nothing but positive results from giving her supplements, including more energy, less mito crashes, less intention tremors, even better balance and speech. Of course, I can’t say that she wouldn’t have had those improvements without the supplements, especially because we started them right after diagnosis, at the same time we adjusted her diet and sleeping habits.
I kind of have a feeling, though, if you or your child was just diagnosed with mito, you probably are eager to try anything, too.
Because trying something is better than doing nothing.
I recommend getting started on a cocktail by talking to a mito doctor, but if you don’t have one in your area and can’t afford to travel to one, you can put together a cocktail yourself and have it approved by whatever doctors you do have (in our case, a pediatrician, neurologist, geneticist and hepatologist have all looked through her supplements and doses to make sure we weren’t giving her anything that could harm her).
This is an important academic article about the types of supplements commonly recommended for mito patients, along with dosing information: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3561461/
What Evelyn Takes:
Evelyn currently takes a combination of CoQ10, L-Carnitine, Vitamin E, a B-Vitamin complex, DHA/Omega-3s, Alpha-Lipoic Acid, a probiotic and a multivitamin every day. But keep in mind, every mito parent or adult with mito I’ve talked to uses a slightly different cocktail. Additionally, the doses depend on weight and any other health factors, so there’s not a one-size-fits-all cocktail.