Clinical Trials

    • Anonymous
      August 27, 2009 at 10:07 am

      [FONT=”Georgia”][SIZE=”3″][COLOR=”Sienna”]There’s another trial going on. It seems so ridiculously simple … and yet …?[/COLOR][/SIZE][/FONT]

      Official Title: “Lipoic Acid for Chronic Inflammatory Demyelinating Polyneuropathy—A Randomized, Double-Blind, Placebo Controlled Pilot Study”

      [FONT=”Georgia”][SIZE=”3″][COLOR=”Sienna”]This is a NIH sponsored trial by the Oregon Health and Science University.

      I’m certainly going to be watching for the outcome. Seems much too good to be true, but who knows? 🙂 [/COLOR][/SIZE][/FONT]

      [url]http://clinicaltrialsfeeds.org/clinical-trials/show/NCT00962429[/url]

    • Anonymous
      August 27, 2009 at 1:49 pm

      Hi Rocky,
      I read about those clinical trials a couple of days ago, and of course went out and bought ALA for hubby and started him on it. From all my reading it is safe enough to do that as it is an anti-oxidant –just given in large doses in the trials. I read that a forum member, Flossie, has been taken it for awhile now. Maybe she will check in and comment whether she has seen any improvement.
      Laurel

    • August 28, 2009 at 4:05 pm

      Rocky,

      ALA has been used safely in Europe for quite some time to treat diabetes pain. There have been quite a few American studies showing that ALA is an important factor in improving general health and longevity. As I understand it, ALA is something of a “helper” antioxidant; taking ALA frees up vitamins C and E to work most efficiently.

      ALA is just part of my supplement regimen, which has been adjusted periodically. I believe I am giving my body as much of the building blocks as it needs each day to try and replace my myelin. I am aware that much of my additional supplements (and their cost) are just peed away. I still have CIDP but my overall health is as good as I can make it.

      It’s not a scientific study, however when I do not take ALA – even though I am taking a slew of other antioxidants – I think I have more foot pain. Others on this forum have not seen any relief with ALA.

      Taking supplements is not a one pill fits all scenario – it can even be dangerous. You have CIDP which involves specific and changing needs. Try and find a qualified Compounding Pharmacist who gives nutritional consultations.

      Your neurologist and family doctors have probably not been trained to help you with specific nutritional questions. It’s up to you to find answers that might help you.

      Flossie

    • Anonymous
      August 28, 2009 at 4:18 pm

      [FONT=”Georgia”][SIZE=”2″][COLOR=”Sienna”]Many thanks for the information, Flossie! I doubt that my neurologist would have any info … but I will check with my usual pharmacist and with the healthy-living “guru” at Whole Foods. Meanwhile, though … heck! — can’t hurt, might help. 😉 [/COLOR][/SIZE][/FONT]

    • Anonymous
      August 29, 2009 at 12:09 pm

      Flossie, how much are you taking? Do you know how much others are taking too?
      I have found research studies on both PN and diabetic neuropathy that both show that 600mg is the best amount that gives the least amount of side effects combined with the most benefit. Knowing one of the side effects and how it would probably affect me, I want to try it but not at such a high concentration.
      Thanks for info!

    • August 31, 2009 at 2:42 am

      Kristin,

      My ALA dosage has changed over the years – my supplement regimen is constantly tweeked here and there. When I was very ill I took 300mg ALA a day; at the moment I am taking just 100mg a day. But if I remove ALA all together I have increased foot pain.

      I have a very long post on May 20, 2006, listing all my vitamins and supplements and the reason I take them. If you cannot get that post under “Search” I can send it in a PM.

      I have been taking prednisone the past 10 years. I changed last year from Neurontin to Lyrica for pain. ALA is not my primary pain medication by any means.

      My neurologist knows I am taking supplements but considers it a waste of money. So did our dear Doctor David. However, even though my CIDP is here to stay, I think my overall health is much improved from when I was first diagnosed. Be sure to check with a medical professional before you take large doses of anything, even herbal or “natural”, because supplements can interfere with medications and health conditions. However, unless they can tell you a specific reason supplements are dangerous to your particular health problems do start providing your body with safe amounts of extra nutrition.

      Good luck,
      Flossie