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01-27-2009, 10:36 AM | #1 | ||
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Ok, I'm no scientist. But I have this little inkling....tried to search for info on this as best I could, and maybe I missed something already known, but can't quite put it together.
So some of the things we are suspecting could have truth and value for us are:
So, I'm thinking, could naltrexone therefore have something also to do with GDNF production, and that is partially why there is some 'anecdotal' (at least) evidence (but I love a good story!) that it helps with pd? And could we be doing something similar to taking a low dose of ibogaine (which is illegal in many places) by using low doses of naltrexone, and somehow be increasing our dopaminergic neurons through some interaction with GDNF stimulated by LDN? Like I said, I don't even have the lingo to talk clearly about this, but does anyone see what I'm driving at here? (once again, please enlighten me if I missed something.) |
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01-27-2009, 12:53 PM | #2 | |||
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In Remembrance
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Sounds like it will do everything but take out the garbage
1: Med Hypotheses. 2008 Nov 26. [Epub ahead of print] Low-dose naltrexone for disease prevention and quality of life. Brown N, Panksepp J. Department of Humanities and Social Sciences, Embry-Riddle Aeronautical University, Daytona Beach, FL 32114, United States. The use of low-dose naltrexone (LDN) for the treatment and prophylaxis of various bodily disorders is discussed. Accumulating evidence suggests that LDN can promote health supporting immune-modulation which may reduce various oncogenic and inflammatory autoimmune processes. Since LDN can upregulate endogenous opioid activity, it may also have a role in promoting stress resilience, exercise, social bonding, and emotional well-being, as well as amelioration of psychiatric problems such a autism and depression. It is proposed that LDN can be used effectively as a buffer for a large variety of bodily and mental ailments through its ability to beneficially modulate both the immune system and the brain neurochemistries that regulate positive affect. PMID: 19041189 [PubMed - as supplied by publisher] Sounds very much like an "adaptogen" to me.
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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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01-27-2009, 01:10 PM | #3 | |||
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In Remembrance
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My goodness, it is impressive stuff. Medline turned up 6400 hits and just skimming through the first 100 show claims of effectiveness for treating gambling, alcoholism, multiple sclerosis, and more.
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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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01-27-2009, 01:33 PM | #4 | ||
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I've mentioned before that my husband takes LDN and at this point, unfortunately for us, it is clear that it has not stopped progression. I know it has worked wonders for AshleyK and others, but not us. I wish it were otherwise, but we can't deny "progress" (ha, no pun intended there).
Having said that, I have two friends who have conditions connected with LDN: one has Crohn's disease, one has MS. The Univ. of Pa. did a study that showed LDN essentially cured Crohn's, and an MS patient group is self-funding a trial for LDN because it works for so many MSers (as in, they have no more attacks, or "episodes", I have heard them called). So it is great stuff. Why it works miracles for some, but not others, I have no idea. I am happy for those for whom it works, though. By the way, we also started taking Azilect as soon as it became available in the US, and despite its claims of neuroprotection, we would have to say, that does not seem to be the case for us. Now, maybe we would be progressing faster without it, but who can really say. We do think it helps make my husband's own dopamine last longer, and when we quit taking it for a bit, he did feel "worse" as he put it, so we went back on it. So it helps, just not in the way that we hoped. This is just our experience so far, for what it is worth. |
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01-27-2009, 06:09 PM | #5 | ||
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Hi,
Lurkingforce, I'm sorry to read that your husband has not done well on ldn. I won't say that I've had great results with ldn. What I can say is that after 4.5 years of 4.5 mg ldn I don't see progression. I also take 600 to 800 mg Q10, so who knows. My mix of PD meds has changed but not really increased. I get my ldn from Skip's in Boca Roton, he's is supposed to be very reliable and uses pure naltrexone powder. You can find a lot of info on how naltrexone works at low doses by doing an internet search or PubMed search on - hong parkinson's naloxone - (naloxone and naltrexone are similar). http://www.ncbi.nlm.nih.gov/sites/entrez My reasons for seeing ldn as a possible drug for treating many diseases is the work done at the NIH by Dr. Hong and his group. Below is a paper on PD and brain microglial inflammation which ties in with Hongs work. http://brain.oxfordjournals.org/cgi/...ct/128/11/2665 |
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01-28-2009, 09:31 AM | #6 | ||
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Senior Member
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Ashleyk, thanks for the update, it is great to hear you are doing so well, that is awesome.
We also take Skip's, 4.5 mg, and have since the get-go. We also take coQ10, the actual brand actually used in the coQ10 trial (I think it's vitaline). The variance with what alternative methods work for some but not others is probably on par with the percentage of Rx drugs that work/don't work (my latest reading put the efficacy rating for Rx drugs at around 40%, so the Rx drugs don't help 60% of those taking them, and that is for the conditions the drug was designed for). I don't know what this tells me, really, except that there does not seem to be one thing, Rx, natural, or alternative, that seems to work the same for everyone. It's still great that LDN works for so many, and with different problems. I just wish we were in that lucky group! |
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01-28-2009, 10:12 AM | #7 | ||
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Thanks all for responses thus far...Rick, I expected LDN to not only be taking out my garbage but also to be new virtual assistant.
lurking, thanks for your experience and good luck with the Azilect. I think it takes such fortitude to keep on looking and trying different things, but there are many things to try out there, and while it's hard to keep running in what seems like a million directions, I have some kind of inner faith that just as each individual seems to respond somewhat differently, that there are also many possible solutions. ashleyK, thank you. It is largely because of your continued posting that I have given serious thought to LDN, and earlier this week stumbled on one of the doctors that seems to know most about it (other than Dr. Bihari, who is currently not seeing new patients). Thank you for your constancy in reporting. |
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"Thanks for this!" says: | RLSmi (01-30-2009) |
01-30-2009, 02:27 AM | #8 | |||
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Member
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I am continuing with low dose dextromethorphan and, like Ashleyk have progressed little since I began taking 4-5mg each night in 2003. In addition to my sinemet and coenzyme Q10, I also have begun taking Vivix, a new product containing large amounts of resveratrol and other plant-derived polyphenol anti-oxidants. The resveratrol story is the subject of a new book by Joseph Maroon, MD called "The Longevity Factor" in which Vivix is mentioned. The scientific hero of the story is Dr. David Sinclair at Harvard.
Robert |
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