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 Alternative medications 
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Joined: Wed Jun 06, 2007 3:11 pm
Posts: 6

Thank you for your reference on the possible downsides of idebenone. I will look into that. In no way am I a tout for idebenone. I mention it only in that it is now, perhaps only temporarily, cheaper than coQ10: $1/gm vs $1.50. The cheapest CoQ10 I have purchased is the Now brand powder from iHerb. For high doses I find the powder more convenient than a capsule. The powder is dispersed into fish/flax oil in a blender. The oil is then dispersed with lecithin into berry juice. The resulting suspension is stable and does not settle out even after a week in the fridge and is quite palatable. For my HD friend I also add creatine, vitamin C, vitamin E (I cut open a capusle), trehalose, proline, ribose, magnesium and taurine. Capsules are reserved for the distasteful supplements. For my friend with ALS who is nurished by a PEG, I prepare a similar drink but include the equivalent of the contents of the capsules in the drink since taste is not an issue. If I cannot get the supplement as a powder or oil, I grind the tablet or cut open the capsule.

You mentioned lipoic acid and curcumin as anti-oxidant candidates for supplementation. I use them as well and for other than their anti-oxidant properties. They both may inhibit or even reverse the formation of protein aggregates that are arguably the initiating cause of LBD and HD pathologies. How they do this, if at all, is conjectural: that they chelate metal ions that would otherwise initiate aggregation or that they act as chaperone molecules in the folding of nascent polypeptides into functional soluble proteins. Trehalose, proline and carnosine may exhibit this behavior as well.

Curcumin I supplement as turmeric powder 10 to 1 with black pepper at a tsp a day sprinkled on food. This should be about the equivalent of a 500mg curcumin capsule with piperine. Piperine is just an extract of black pepper. Anyway this amount and combination is about what many Indian communities eat on a daily basis - and have eaten for thousands of years with no apparent health detriments. It is available cheap in bulk from Indian food stores.

Again thank you for your response. I have been involved in this activity for only a few months and would appreciate any comments, criticisms, reactions, pointers etc. that those more experienced and learned than I might give me.

Sun Jun 10, 2007 3:19 pm

Joined: Mon Feb 05, 2007 3:43 am
Posts: 215
Location: Seattle, WA
I didn't find the Now powder cheap enough at these dose levels to mess with it - Cal has a robot that dispenses his meds, and despite my concern about swallowing four 26 Oblong gelcaps every day, things are working well.

The metal ion scavenging role is certainly an interesting pathway. Teva has a molecule in mid-stage development that has MAO-B inhibitor, cholinesterase inhibitor and metal-scavenging moieties.


Cal is not the real name of a real 84 year old with DLB. I don't speak for LBDA, nor do I have clever initials behind my name, so information is provided without warranty. Caveat everybody. I blog at

Sun Jun 10, 2007 4:16 pm
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