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03-07-2013, 02:07 AM | #41 | |||
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I'm sure you're busy, thank you in advance for any help or pointers in the right direction. Best, Abraham |
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03-07-2013, 08:14 AM | #42 | |||
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In Remembrance
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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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03-12-2013, 04:25 PM | #43 | ||
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There is a diet called the GAPS diet that is all about correcting the gut flora - http://www.gaps.me/preview/?page_id=35
I haven't got the energy to sstick to a special diet but it is woprth a try if you have. Trixiedee |
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03-12-2013, 04:53 PM | #44 | |||
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10-18-2013, 08:34 PM | #45 | |||
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In Remembrance
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I am going to post with only light editing until tomorrow. But there isone question that I would like to ask:
Does anyone else here get turned on by the act of straining at stool? Now get your head out of the toilet. I don't mean "sexually aroused by the thinking about the act". I mean when you "give it all you got while sitting upon the Throne of Elvis" before you meds are on the scene, do you find that, much to your surprise, the Wait is over and life can begin? <begin quote> Hypothesis: rather than Parkinson's causing constipation (as I'd always assumed), it is rather the case, that with the wrong bugs in the gut, Parkinson's and constipation reinforce one another: Parkinson's slows the transit time, leaving longer for toxins to build up, leading to a worsening of the Parkinson's, and so on. The darned GI system is a heck of a lot more complex than was thought just a decade ago. And we are symbiotic with it. And dead without it. It is a high bio-tech manufacturing house turning out thousands of things that our lives need. If this hypothesis were correct, we would expect to find that: - once the body has recovered from the stress of defecation, symptoms would fall to a minimum and then increase progressively until the next defecation. (It could be that the effect of years of damage swamp the short term effects); - the probability distribution of the time between defecation is U-shaped. (The hypothesis would suggest that you have a period of reduced symptoms when the chances of going again are good, but if this opportunity is missed it gets harder and harder to go, until eventually the issue is forced.) <end quote> I had intended to come back to this earlier but I keep getting sidetracked. But "No more!, I cry." is close to "No! More! I cry!" which is astoundingly different in meaning. I plan to follow this closely for awhile. At least as closely as prudence dictates underthe circumstancs. Particularly in light of the FDA's recent determination that we are not smart enough to wipe ourselves! That is basically the stance they are taking in requiring that 100-page forms be filled out and given to a soulless bureaucrat for a decades long deliberation on your specific case. This technique is actually working and working too well to suit some very self-important individuals. (darn! That's a good looking word that I just gave birth to. It means, "May the aroused caterpiller of love seek to take refuge in your home." But, unfortunately, I seem to have lost the word which began it all. We really do have a problem here. The state, with its many weapons, is ready to fight and kill us over something as insane as this. Actually, the FDA - USDA - Big Pharma never took it seriously - at least not until it was almost too late. Think about it for a minute. Would you have wanted to be the one who broke the news to Mr. Big? So now they are "whistling past the graveyard." We are talking about the reseizure of the power over our own health and the Big Boys are going to lose. The poop jokes alone will be such a mess that Leno et al will have it made. And if the thugs decide to bust heads to reestablish who is in charge, they are going to quickly discover that they have stepped in it for real this time. Anyone seen me around here? Yes, it looks like it may be a real battle shaping up. Who would have thought that The Great Corporate War of October 12th of 2015 from 8:07 PM to 8:13 PM would be over such mundane materials? But enough about me. What about you ? Before moving on I would like to apologize for this brief outbreak of non-confbormity, but it seems that the occasional burning off of the dregs of the weeks L-dopa is of some value in beating psychois resulting in this mess. Sometimes a good old dopamine rant is just what granma needed.
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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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10-19-2013, 04:55 AM | #46 | ||
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Thanks Rick for raising the issue of constipation again: it's an important topic for me.
For the sake of completeness, Rick in the quotation section of his last post (except the paragraph beginning "The darned GI system ... ") is quoting me, Post 21, 12th February, 2011. On the issue of straining while constipated, the instant I know I'm going to be able to defecate, I have, I believe a surge of dopamine. The inverse is also true: if I have more dopamine in my body, I'm more likely to defecate. (A mistake that I frequently make is on feeling the urge when I get up, and before I take my drugs, to sit on the toilet immediately: 2 hours later I've not been and I'm "off", with little chance of going for several more hours.) On the issue of faecal transplants and Parkinson's, as I understand the situation, we are almost no further advanced in our understanding of whether faecal transplants are effective for PD than we were nearly 3 years ago. Does anyone have recent news of Borody's work in Australia? However, the evidence seems to be strong for its effectiveness in treating C.diff. There was an interesting report in The Independent newspaper this week by Charlie Parker: http://www.independent.co.uk/life-st...g-8884846.html This described the work of Dr Clokie's team at Leicester University on the use of specific bacteriophages (viruses) found in the gut to kill specific bacteria. Their concern was C.diff, but it seems to me to potentially have implications for PD. Apparently similar bacteriophage techniques has been used for some time in Eastern Europe. Does anyone have any epidemiological evidence that PD prevalence rates are lower there? John
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Born 1955. Diagnosed PD 2005. Meds 2010-Nov 2016: Stalevo(75 mg) x 4, ropinirole xl 16 mg, rasagiline 1 mg Current meds: Stalevo(75 mg) x 5, ropinirole xl 8 mg, rasagiline 1 mg |
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10-19-2013, 09:15 AM | #47 | ||
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Latest news on Borody's work.
I found this radio interview [1], dated 2nd November, 2012, with Borody. The interview was about his work, including faecal transplants. He describes constipation as being caught, most likely from an infection. He thinks fibre and yoghurt have no impact. He doesn't mention Parkinson's. He published a paper on FT in July, 2013 [2]. Worth reading, but it only mentions Parkinson's in passing, referencing the original New Scientist interview. I think that the lack of information about FT and PD most likely suggests that the work on PD has not yet produced any interesting results. References: [1] http://www.marybacon.com/interview-w...or-tom-borody/ [2] "Fecal Microbiota Transplantation: Indications, Methods, Evidence, and Future Directions" Thomas J. Borody, Sudarshan Paramsothy, and Gaurav Agrawal Curr Gastroenterol Rep. 2013; 15: 337 http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3742951/ John
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Born 1955. Diagnosed PD 2005. Meds 2010-Nov 2016: Stalevo(75 mg) x 4, ropinirole xl 16 mg, rasagiline 1 mg Current meds: Stalevo(75 mg) x 5, ropinirole xl 8 mg, rasagiline 1 mg |
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"Thanks for this!" says: | lab rat (10-20-2013) |
12-30-2013, 07:51 AM | #48 | |||
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Junior Member
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http://www.medpagetoday.com/MeetingC...e/IDWeek/42044
Does anyone think that this might help PWP? Hope so.........
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John Diag. Mar 2008 YOPD, @ age 39 |
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"Thanks for this!" says: | lab rat (12-30-2013) |
12-31-2013, 06:53 AM | #49 | ||
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Senior Member
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Do I think the pill format will help?
No. The article doesn't describe pills as we normally understand them. Anyway, I think bottom up is the easiest approach. Do I think fecal transplants may help PwP? Yes. But I must admit that my enthusiasm has waned since this thread was raised almost 3 years ago. On the one hand this technique appears to be being used more and more frequently and successfully for c. difficile. On the other hand no progress seems to have been made for its use for Parkinson's: I've not found any new reports of fecal transplants helping PwP. As I've previously posted, constipation has been a large part of my Parkinson's experience. That alone would suggest fecal transplants could be useful for me. Add in the Braak hypothesis, of the progression of PD through the enteric nervous system to the brain, and people's experiences with h. pylori and it seems possible that it could help. Do I have the guts (!) to DIY it, not yet. But, I would be happy to join a properly supervised trial. The reports of fecal transplants led me to investigate probiotic yogurt as a possibly safer alternative. I made this myself in large quantities, 6 pints at a time. This seemed to give me a small benefit. But I have since backed off because I was putting on too much weight. John
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Born 1955. Diagnosed PD 2005. Meds 2010-Nov 2016: Stalevo(75 mg) x 4, ropinirole xl 16 mg, rasagiline 1 mg Current meds: Stalevo(75 mg) x 5, ropinirole xl 8 mg, rasagiline 1 mg |
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"Thanks for this!" says: | lab rat (01-01-2014) |
12-31-2013, 11:36 AM | #50 | |||
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Quote:
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Born 1948. Diagnosed 2011. DBS ON 7/17. Taking cd/ld 200 MG at 6 am, 9 am, 12 pm, 3 pm, 6 pm and 9 pm. Finasteride 5 mg, Life Extension Mix and Once-Daily Health Booster, Mitochondrial Energy Optimizer with BioPQQ, Optimized Curcumin (longvida), Triple Action Cruciferous Vegetable Extract with Resveratrol, Vectomega-3, Vit D3 5000U,Lithium orotate 5 mg, AMPK Activator, Kefiran, N-Acetyl-L- Cysteine (NAC), Tri-Magnesium, Advanced NeuroPro, Duozyme, Palmitoylethanolamide (PEA) Updated 9/21/17. |
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"Thanks for this!" says: | lab rat (01-01-2014) |
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