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03-20-2007, 02:38 PM | #1 | ||
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I take anywhere from two 25/100 Sinemet per day to three halves of 25/100. Sinemet makes me grind my teeth, so sometimes I cut it in half. I take one 100 Amatadine per day. Finally, from dinner on I take three .5 Mirapex.
Did anyone else have a rapid heartbeat? I looked up DM and rapid heartbeat and got it as a side effect of overdosing with DM. Was half a tsp. too much? Ann |
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03-20-2007, 04:53 PM | #2 | |||
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In Remembrance
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Never thought you'd hear that, did you?
but to get serious, Steve is a good example of a standard medication program and that could be why he is doing so well - i.e. no "stealth" MAO inhibitors. Ann is a tougher guess, but one possibility is the "slow metabolizer" explanation that I mentioned in an earlier post. I forget the exact number but I think five percent of us have a system where a little DM goes a very long way. So, if those guesses are right, then it would be sensible for someone who didn't want to tackle the "alternative" route to simply do like Steve. And if someone has a body that doesn't get along with the DM might want to investigate things like green tea extract which offers some of the same protections/ I think there are several lessons here but the big one is that there really can be something important lying right under our noses for years. It is almost a textbook example and I find it encouraging. I nominate Steve for the Big Cheese prize to be shared with Robert, Ashley, Cara, Ann, etc etc
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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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04-20-2007, 07:33 AM | #3 | ||
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ALA/ALC improves my memory.I am positive about that.
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07-23-2007, 03:50 PM | #4 | ||
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Husband is still using the cough medicine but also using a number of supplements and working hard at the gym so difficult to sort out what, if any, are having a result.Touch wood, there seems to be no, if not very little progression.Two separate people, without prompting, said he seemed a little betterne was the gym instructor and one a friend of long standing.I do not know:the tremor has not diminished but his face seems a lot,lot more mobile.Still on13 mg Requip only.Time since tremor became so troublesome went to doctor:3.5 years.+
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07-23-2007, 09:25 PM | #5 | |||
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In Remembrance
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I will not hijack this thread so if there is any interest we can jump to a new one but the reply from Englicsh conutry dancer got me to thinking about how difficult it is to sort out what we are doing and what is working.
If those of us experimentinting with anything used our signature line like a little billboard like below we could compare. it would be of some value wouldn't it?
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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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07-23-2007, 09:27 PM | #6 | |||
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In Remembrance
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...I am sleepy? I'm not even going to try to edit that one.
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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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02-27-2014, 12:11 PM | #7 | ||
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Hello,
I am posting for my wife who has had PD and was dx'd 12 years ago. All previous posts were made by me, John, and not Ashleyk. Going back, reading this thread on DXM or LDN, is a sad letdown on the hope I had for these opioids. I became a believer in these drugs especially after reading the NIH research papers by Dr. Hong et-al. Assuming that the LDN my wife was getting from Skip's Pharmacy for 8 years was real, I can say that her PD has progressed to the point where she needs a lot of attention and is probably at a stage in the disease that is typical for her type of PD. She faithfully took the capsules every night but stopped maybe 2-3 years ago believing she was progressing. I tried to get her to try DXM but she couldn't wouldn't do it. My recomendation would be to forget about LDN and try DXM 1/2 tsp. Her condition now is poor. She is fragile, having lost 30 lbs, along with severe osteoporosis, 3 fractured vertebrae from many falls, very forgetful and now having hallucinations at times. She is not good at taking her meds. She is taking about 8x 100mg of Stalevol, maybe 2x levoc-dopa 100mg and 1x Neupro patch 4mg daily. She has a lot of off time, little good time and dyskinesia which effects her mind and is scary. I have asked her docs to hospitalize her for PD so someone can figure out a better treatment but I guess that won't happen until she goes to the ER. She will see a new neurologist in 2 weeks who I hope will send her to a PD specialist at Brigham and Woman's Hospital in Boston. I am very frustrated with everything especially the failure of everyone/anyone to come up with a much better treatment than L-dopa. John |
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"Thanks for this!" says: |
02-27-2014, 01:27 PM | #8 | ||
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Magnate
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Quote:
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07-24-2007, 03:33 AM | #9 | ||
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Member
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We could see if there was a common thread.We would have to discount the placebo effect.Here goes:
Curcumin Concentrated Omega 3 True food Natural VitaminE Acetyl Lcarnitine&alpha lipoic acid marketed as Alpha(It is important to take these together...synergy) True Food Maxi Q10 Only 120 mg(Only just started this because of expense) Super antioxidant Suitable cough medicine . True food indicates it has been treated to maximise its potential Amount taken is manufacturers maximum recommended dose except for cough syrup All this costs a fortune but we think it worth a go. We will not really know if it is worth it for years PLUS 40 minutes in gym doing running(yes running) cross trainer and now cycling.This is done on about 4 or 5 days a week.On at least one of the days he does not go to the gym he Morris Dances(The bells and hankies and stick variety) |
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07-24-2007, 07:55 AM | #10 | ||
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It's been just over 36 months since I started taking 4.5 mg of naltrexone, LDN. At that time they said my increasingly worse tremor was MS but 4 months later I started Sinemet which worked and so I now have PD. Since that time Mirapex was added to my PD and Sinemet was reduced somewhat. I still take relatively low amounts of both drugs maybe because I'm still early onset?. I also take 400 mg of Q10 and some magnesium daily. I'm now 58 and my first tremor symptoms began maybe 5 years ago. My tremor is gone for now and outside of the drug side effects and poor sleep and low blood pressure, I manage quite well. I think I can say my PD has not progressed but it's hard to say. I hope it's because of the LDN. I've read a lot on what to expect about PD progression when beginning Sinemet and I am still not clear where I should be along the curve. I still wait for the other shoe to drop on progression but taking LDN gives me some hope for now that maybe I'll be ok. Note: I base most of my believe in LDN on the work done by Dr. Hongs group at the NIH. They have shown that low doses of opioid receptor antagonists like naloxone, naltrexone and dextromethorphan can slow or halt simulated PD in rodents.
http://www.ncbi.nlm.nih.gov/sites/en...&dopt=Abstract |
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