by Jerry Lampson, HDL 23-Oct-2000, Updated 06-Jan-02

The Dilemma of Drug Trials

I believe we are very close to an effective treatment for HD. Phase 3 clinical trials are in progress and more trials will be scheduled. Two immune related therapies appear to reverse HD. The agents are CNTF and EPA. This will lead to other therapies.

Dr. Horrobin and Dr. Wheelock make a good case for drug trials. Some may not be comfortable with the protocol. Some may feel food supplements are unjustly bashed. That is the system and it works to develop drugs of great benefit. Still drug trials are not perfect and are subject to conflicts of interest. There are serious concerns about the HDSA CARE-HD trials.

While we wait, time brings many to HD symptoms and untreated HD progresses inexorably to death. Some will be motivated to take unapproved drugs or supplements that show some evidence of slowing down or reversing HD. Some will even take anything that has any hope at all of slowing HD. They will feel that they will know the benefit or harm to themselves from the supplement or drug.

My intent here is to present information on the HDL that will help HD folks decide, with the help of their care givers and doctors, what to do. I want to present all sides, from me, from drug companies, from doctors and most important from you.

Definitions:

AgentClassDoseSide EffectsComments
PURE EPA, LAX1011d2 grams/daynone reportedAvailable from Japan
EPA concentrated fish oil3ffor 2 grams of EPA Some minor. Emulsifed may have less side effects.Available from Sam's Club, RiteAid, Walmart, www.OmegaBrite.com(*EPA/DHA=7 ratio, class is 3f), Pharmaceutical Grade. Sources
Creatine2f5-10 grams/dayMinor.US Pharmaceutical Grade available.
TUDCA/UDCA2d~5X labelnone reportedSee Ursodiol Treats HD
Co Q106fper label/prescriptionsome reportedSee Research Story
Minocycline2dper prescriptionseriousSee drugs
HD diet5fp.r.nhealthCalorie restriction and exercise could help. Related.
-echinacea 6fNAacceleration of symptomsUsed to prevent colds
-Cow's milk6fp.r.nweight gainZero fat milk better.
-Aspertaim, MSG6fminreportedSee Aspertame
-NMDA blockers7f,dminreportedNMDA bolocker include many drugs and OTC medications.
-Haldol, haloperidol 7d.5-100mg/daycommon, severe, may be irreversibleCounterindicated for HD
*Send me your other sources of EPA concentrated fish oil for posting here.
Your input is invited. e-mail me. All e-mail addresses will be kept confidential.