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#11 | ||
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Magnate
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if your're thinking inflamation, why not tylenol? there was a recent study showing lower pd in regular tylenol users.
coffee drinkers have less pd. i take many of the supps mentioned here except alpha-lipoic, it is a chelator but in low doses, from my understanding, just redistributes metals and passes them thru the bbb. then there's the worry over high iron, manganese, mercury, pesticides, herbicides, organic solvents, plastics, hormones, air pollution, etc. etc. clean water and clean air should be major concerns along with diet. if you think about it, a lot of supps are taken supposedly to counteract environmental toxins. a lot of supps likely just get peed out as our cells can only assimilate so much. just like with any chemical reaction A + B ---> C, you can add all the A you want but if B isn't there in the same amount, you aren't going to produce anymore C. unfortunately, our biggest enemy is age as our cell repair mechanisms lessen and cancer, diabetes, pd, and other old age problems set in.staying young is the challenge, that's why the drug industry is spending billions to find anti-aging drugs, the big one being Resveratrol which i don't take for no particular reason. that's supposedly a major benefit of exercise. saw a naturepath for awhile, damn expensive because there is no end of supplements and tests they can try and no insurance to question what they do.. Last edited by soccertese; 04-03-2010 at 09:12 AM. |
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#12 | |||
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Senior Member
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Yes, we can only do so much <sigh>. I am just so frustrated by the many other possible pharma treatments and natural supplements that do not get developed or even looked at because there is no major patent/profit involved. It's like there is this "system" that serves to benefit doctors, pharma people, researchers, fed regulators, etc. but though we are supposed to be the driving force behind it all, no one listens to us, sees us; we are all but invisible. I end up feeling helpless in it all, so the only way I can fight back is to keep questioning doctors, learn as much as I can, and help myself either remain as well as I am now, or better, reverse it. On the inflammation aspect, I have heard that the studies showing neuroprotection benefit people who do not have PD- just means they are less likely to get it. I don't think there is any evidence that it helps after the fact. Still, I will go for the Ibuprofen for a headache...one never knows. I have actually thought of asking my GP for a prescription NSAID. As for the fresh air, I am not able to up and move right now, so have to make the best it. ![]() Thank you for the advice and warning on the Naturopath expense; good to nip that in the bud with the first visit. Laura Last edited by Conductor71; 04-03-2010 at 06:43 PM. Reason: getting a name right for a change! |
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#13 | ||
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Magnate
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i watch websites like this one, with a grain of salt.
http://www-t.decisionnewsmedia.com/n...5e45abaccf5234 |
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#14 | |||
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In Remembrance
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...but just because I care. (Seriously on that, BTW)
First, on the Naturopath. I, too, consulted with one until the expenses got to be too much. But that is the fault of our insurance system. I learned a 100-fold more from him than I have from my neuro. It has been three years and I still am finding things to be true that he told me then. Of course, I am sure there are bad ones. But in general they are the opposite of specialists (one of the banes of PD) and see a bigger picture. The combination of lipoic acid and acetyl-L-Carnitine have a synergistic effect on mitochondria, the base of all our energy. Here's a link to the work of Bruce Ames. Tylenol will eat your liver. In making sense of the claims for various supplements, it gets bewildering very quickly. Our choice is to either wade in ourselves or find someone to follow. Dr. Ames is a good choice plus Dr. Blaylock noted in another thread. These are the opposite of the flashy media darlings. Dr. Ames has been around since Newton and they don't dare argue with him. Dr. Blaylock lost both parents to PD and takes it personal.
__________________
Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000. Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well. |
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"Thanks for this!" says: | Conductor71 (04-03-2010) |
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#15 | ||
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Magnate
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ames, has he actually proven that combo results in any verifiable improvement in humans? his research has been in rats.
he sure was quick to patent and sell it as a supplement. The University of California has patented the use of acetyl-L-carnitine and alpha-lipoic acid (US Patent #5,916,912) as a way of "enhancing metabolism and alleviating oxidative stress." Juvenon, a company founded by Ames and Hagen, has licensed the patent from the university. Their first product — Juvenon Energy Formula — contains both alpha-lipoic acid and acetyl-L-carnitine. The bottom line Of course, the big problem is the lack of reliable research to show that these compounds benefit humans in the same way as rats. Under certain circumstances, large doses of the popular antioxidants vitamin C and CoQ10 have been shown to increase oxidative stress. Whether alpha-lipoic acid and carnitine have any negative effects is a question that can only be answered by more human research. Aging is a complex process. Different tissues may have fundamentally different mechanisms underlying their maintenance and repair. And most scientists believe that mitochondrial health is only one cog in the aging wheel. Ames acknowledges he has not discovered the Fountain of Youth. But he does lay claim to a Fountain of Middle Age. "I don't want to over-hype it," he cautions. "If you're an old rat, it looks very good. But we still have to wait for the results from the human trials. There's every reason to think it's going to work in people. I'm very optimistic." http://www.thefactsaboutfitness.com/news/aging.htm http://mcb.berkeley.edu/index.php?op...lty&name=amesb http://www.pmri.org/forum/archive/index.php?t-41.html http://www.sciencebasedmedicine.org/?p=206 http://ask.metafilter.com/6845/Is-Juvenon-bollocks i realize ibuprofen in large doses can cause liver damage but the recent study that showed a 40% decrease in the chance of getting pd referred to regular users so i assume people with arthritis, etc take it quite often. http://www.medscape.com/viewarticle/717233 |
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#16 | |||
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Senior Member
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Given that most pharmaceuticals won't touch the stuff as not profitable enough, we'll likely never know. Pity cause it seems that an innovative group of people with not much to lose could actually market "blends" of natural treatments that could be tested and potentially branded just as a complementary therapy or alternative. If the research were there to back it as at least not being harmful, well let's say that the potential for neuroprotection with such a blend is no better or worse in my book than the claims made by TEVA over Azilect. I have no more faith in synthetics that make big claims. In the end, this is all one big leap of faith. Rick- I read the Blaylock download; this is the most comprehensive coverage I have seen by him on PD- thanks. I noted though that he specifically recommends l-carnitine for those who have PD, not acetyl carnitine. He does not give a reason; do you happen to know why? Laura |
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#17 | |||
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In Remembrance
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The question of L-Carnitine vs acetyl-l-carnitine seems to be about which has greater bioavailability. As I recall, there isn't a clear winner.
The leap from rat to human is a problem everywhere one turns in research and not limited to PD. But PWP don't have the luxury of waiting. We have to either jump or sit back down. The confusion on the Tylenol thing is acetomenophen (sp) vs ibuprofen, I think. The former is the dangerous one. I don't see patenting and marketing his work as a negative. It is just the way the system works. I do find it more palatable when a scientist moves to promote his own discoveries than when a Corp moves to profit off the work of others. The worst, however, was when the most published neurologist in the US secured a patent on the use of mucuna in treating PD, ignoring 5000 years of prior work by others Leaving all that aside, however, I would emphasize that there are at least two major sub-groups of PWP generally labeled Senior Onset and Young Onset. The first is, indeed, age related, but the second is something else. Inflammation is just one of a half-dozen processes at work in it, but probably the most destructive one. Most importantly (and little noted by our docs thus far) is that inflammation is a very complex thing in itself and that some of our greatest problems are spinoffs from that. The clearest demonstration of that was Ron's abcessed tooth a couple of years ago. He was bedridden by the chemicals produced by his own immune system, not by toxins from the microbial invaders. While the tooth caused an acute crisis, there is a lower level chronic exposure in all of us. Some of our symptoms come from this self-poisoning and the right approach should provide both short term and long term benefit. But it might be fifty years before this approach yields results.
__________________
Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000. Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well. |
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#18 | ||
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Magnate
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conductor,
i disagree somewhat, there are many studies on green tea, ginseng, omega-3, curcumin, coq10. china, japan, germany have done a lot of work. there are huge studies on vitamin c and e, some pertaining to pd; http://bastyrcenter.org/content/view/484/&page= http://www.ncbi.nlm.nih.gov/pubmed/16288072 fascinating, totally different opinions. wonder why? i agree prevention research using supplements is under funded but you can find it. especially for alzheimers. |
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#19 | |||
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In Remembrance
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If one looks "under the hood" with PD, there is a lot going on. At a minimum, a case can be made for all the following having a role:
Neuroinflammation Oxidation Mitochondrial Dysfunction Excitotoxicity Stress Response Endothelial Failure Autoimmunity/Autotoxicity Misfolded Proteins That's one heck of a lot of systems to be going screwy simultaneously. That leads me to suspect that the primary problem lies at the next level up at some sort control or integration function. The best candidate I have thus far is the endocrine system's hypothalamus-pituitary-adrenal axis, the stress centers. But I just can't believe that 8 or 10 different systems fail simultaneously but independently.
__________________
Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000. Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well. |
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"Thanks for this!" says: | Conductor71 (04-05-2010) |
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#20 | ||
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Junior Member
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Gary (Someone with those funny letters behind my name) Last edited by @chilles; 04-04-2010 at 05:45 PM. |
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"Thanks for this!" says: | Conductor71 (04-04-2010) |
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