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Peripheral Neuropathy - L-Carnetine
#113234 - 10/29/04 01:25 AM
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Greetings! Just thought I would post the following info, it is based strictly on my personal experience and is not a recommendation.
I am a long-term survivor(21 years) and in general good health. Last year I successfully complete a course of Chemo for Non-Hodgkins Lyphoma. In March 2004 I began to experience numbeness/tingling in my lower legs and most profuoundly in my arms and hands. A muscle biopsy confirmed Mitocondrial Toxicity and Trizivir was stopped to to remove the AZT component.
Efforts wtih Nortriptyline were reasoanble, but not totatlly effective and the mental effect too powerful. In September, 2004 I was introduced by our local Treatments Officer to L-Carnetine and have used it now for one month, 1500mg AM/PM. My personal experience with this has been exceptional, it has worked a treat. The neuropathy has reduced by up over 85% at a guess, circulation improved and energy levels increased. So, in my mind, this is a winner and should be considered as a treatment for those suffering from Periperal NeuropathyMyopathy issues.
Trust this is of some assistance. Thanks to TheBody.com for a fantastic service. Cheers.
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Definitely good information. I experienced the neuropathy game, from d4t (Zerit), and was helped tremendously by alpha lipoic acid. I also, like you used the L-Carnetine, but needed more than that. The alpha lipoic worked wonders, as it seems to help heal the myalin (sp) sheath that covers the nerve fibers, damaged by the Zerit. Started at 100 mg/day, and ended up at 200 mg/day for neuropathy. Very much impressed my physician, as well as me. Improvement started in <48 hrs. His opinion that it provided better results than anything he could have prescribed, and the control remained good for the entire 3 years that it was part of the cocktail.
Am not on Zerit anymore, changed to Viread due to liver problems.
Not only that, it is a powerful antioxidant, with in some studies, effectiveness in vitro against HIV. It also is supposed to help the immune system in fighting deformed cells, as in cancer, etc. It also has effect in lowering blood sugar, which some anti-HIV meds tend to increase over time.
Am at this point doing 200 mg am/pm, and lower doses work ok, but for neuropathy, seems to be better in tablet form than in capsules, like I take now using only for immune health, detoxifying and to keep blood sugar lowered.
Alpha lipoic acid is not toxic, particularly at any kind of dose that we could afford. One source I read indicated something like 37,000/mg/day is required to cross the line. So for some people, it may take more than I take to get the desired results, and may have to be adjusted up over time.
Another point to note: I observed that when dealing with medication-induced neuropathy that too much sugar had a distinctly negative impact. Very much increase in pain.
Hope this info is of some use to someone.
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Moffie
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All Star
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Reged: 02/14/04
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Posts: 85
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Loc: Arizona
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Hi Alexander
I too am a 21 year old. I have had PN for several years now, and up until I started 3x100/day of Alpha Lipotic Acid in April, I used a cane to get around. Often times I need a mobility scooter to do Costco or Art Fairs or the like. Since starting the ALA, I have seldom used the cane, and the scooter stays in the car most of the time. Now I see that L-Carnitine can also be of some help. Wow, will the good news ever stop?
The detailed response about ALA was very informative, I had no idea how it worked, but now I do. Thanks so much guys, and I continue to enjoy the joys of walking unaided.
Peace, out.
--------------------
Yours;
Tim
"Living Positive Since '83"
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Jessie
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Guardian
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Reged: 06/15/04
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Posts: 395
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Hello all,
I dont take any medications yet at this time BUT I do know the day will come and I am so grateful to all of you who post such wonderful news about different medications/vitamins and other such "Helpers" in fighting off side effects from the medications or from the virus itself...I find your knowledge to be a source of my power and thats what keeps me going each day!!! =) Just thought I would share with you all how grateful I really am to have found such a wonderful panel of people to help me and others through difficult times...You are strength, support and love for many, including me!!!! Thankyou for your kind words and your experience with all that you go through everyday and for sharing with us your trumphs as well as the defeats....love to all...~Jessie~
HIV+ since 2-3-04
"While there is breath, there is hope".
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