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#1 | ||
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In Remembrance
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Quote:
So you are on the mark at what you are reading. I have no clue why they do not test for them all. maybe the tests are new. Every pd patient should be tested for this before they start meds. And also for vitamin D. You are astute and a fast learner. Be sure to let us know what you learn. That's how we do it, but reporting to each other . it is dangerous, for example to assume that a pwp can benefit from Alzheimers meds. especially the youger ones just to improve their memory or focus. THis results in a toxic build up that can paralyze a person.' Here's a link and please add anything new you can find. I'm requesting to be tested for them at the end of this month - if you find anything else out please let me know. Your mother is most fortunate to have a problem solver for a son. http://www.integrativepsychiatry.net...ter_tests.html sincerely
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paula "Time is not neutral for those who have pd or for those who will get it." |
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"Thanks for this!" says: | imark3000 (04-13-2011) |
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#2 | ||
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Magnate
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CarbiDOPA cannot cross the blood brain barrier
http://en.wikipedia.org/wiki/Carbidopa it will be interesting to see where this is going. |
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#3 | |||
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In Remembrance
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One should test, of course. But few do.
At a minimum: the neurotransmitters, yes, but where? Dopamine in the gut - does it relate to the brain? what about ratios rather than absolute values? Does the level of "x" really matter so long as there is three times as much "y"? So, don't just run into the lab and throw money around. Think it through and have a reason for your decisions. Don't stop with the brain neurotransmitters, though. In fact, don't even start with them unless you have the reasons. There are other tests that may be of more value to you. For example, There is ample reason to think that PD is driven by inflammation in the CNS. C-reactive protein gives info on the peripheral conditions, but what is going on past the blood brain barrier? Maybe you could learn more by tracking TNF-alpha or another cytokine. Keep in mind that these chemicals are neurotransmitters in their own right, too. We have had the opportunity to observe one of our number go down fast with an abscessed tooth from those chemicals and to bounce back as the antibiotics went to work. Then there are the similar chemicals of the endocrine system's stress circuits. Cortisol is a reflection of chronic stress, but it is also a reflection of inflammation. Adrenaline is a marker of acute stress, but it can play hell with electrolytes, too. And don't forget the electrolytes! They are responsible for the functioning of both nerves and muscles. Yet, no one tests for them. Look online and figure out how wide you can cast your net. Maybe you can find a sympathetic GP to give you a break on costs for drawing the specimens. But share your data here. -Rick Quote:
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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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#4 | ||
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Senior Member
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Hi, it is good to have you here, and always nice to hear fresh voices and thinking.
AS I see it the problem with even trying to balance neurotransmitters is how do you know what 'normal' levels are in any given individual - they could vary considerably throughout the day, and are at work throughout the body not just the brain. Even taking sinemet is like taking a sledgehammer to a nut, as only a tiny amount gets to where it needs to go, it certainly does not target the SN directly. That is why taking it is a trail and error process, and you may have seen some of us use the analogy of 'walking a tightrope', when trying to manage our medications. Having said that, and read Paula's post, in particular, there is something to be said for 'trying' to do something. Many of the neurotransmitters when out of balance give rise to other conditions, they are not the same as vitamins, and Paula has done a lot looking into this, and into which ones we may be lacking. An immediate one that some to mind is acetylcholine, as in terms of movement mechanics it provides the opposite message to dopamine. I take a medication in this class, for another PD related symptom, and it smooths my movement, and helps me not wear off. There are loads of them, and various non-neuro specialists who see PD patients for other things are aware from the anecdotal evidence of their patients that they can help with certain aspects of PD. As can some of the antidepressive medications. Another problem with this is that neuros are and have been very l-dopa centric, but that is actually changing, and the wide range of studies being undertaken looking at this may eventually lead to treatments. But the passage of novel and good ideas through the pipeline to make it to patients is ver, very slow. The better news is that some of these medications are actually licensed for other conditions. Going back to my earlier point, trying to balance neurotransmitters still remains a trial and error thing, and other than l-dopa the best treatment that we know of is exercise, which can be very easy for some of us, and an immense hurdle for others. My guess is that when sufficiently exercised in a way that restores normal movement the body will generate some of the neurotransmitters and get them to the right places, and this will compensate for loss of dopamine, or trigger it's production in the non-SN areas of the brain and elsewhere in the body. There is a great piece of video that was posted in recent weeks of a woman who is using chi kung, and nancyclist and many others are using exercise. How well this works in the very long term is something only time will tell. I have strayed a little from the balance of neurotransmitters, but my personal belief is that the more naturally you can boost them or re-balance them the better, and it is likely that exercise will be found eventually to play a huge role in staving off the worst effects of PD. Though how you get this to the people who are already far enough down the line to suffer from inertia and slowness is going to be an issue. Campaigning for care modalities that include exercise as a vital part of PD treatment is one possible way to go. Lindy |
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"Thanks for this!" says: | imark3000 (04-13-2011) |
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#5 | ||
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In Remembrance
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i will discusss it with my neuro and with the NIH eval at the end if the month before I begin. I'm not that interested in dopamine - i want to know about actetycholine, glutamate, gaba, and norepinephrine. Without neuro and insurance help, it will be one at a time over a period of time if course - i think it's so relevant that i just have to do it.
paula
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paula "Time is not neutral for those who have pd or for those who will get it." |
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"Thanks for this!" says: | imark3000 (04-13-2011), lindylanka (04-12-2011) |
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#6 | ||
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Senior Member
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Paula, it would be great if it was established exactly what does go haywire when dopamine levels are reduced, and how the other NT's are affected, and what are the signs ........ then we might be able to see exactly what is happening in PD. But I do not see anyone doing this kind of thinking, or not in the scientific world anyway
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"Thanks for this!" says: | Conductor71 (04-13-2011), imark3000 (04-13-2011) |
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#7 | ||
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In Remembrance
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I fully realixe that the ideal situation would be under doctor supervision. i need to really iinvestigate. but if the doctors say that isn't a valid measurement, why would they be right???
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paula "Time is not neutral for those who have pd or for those who will get it." |
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"Thanks for this!" says: | lindylanka (04-12-2011) |
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#8 | ||
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Junior Member
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Thanks for all your feedback so far! I definitely see some potential problems with this approach (cost, sensitivity of the results to other factors, etc.), but I still think I'll get my Mom to try it 2 or 3 times over the next 6 - 18 months to see if it's useful. Obviously, since there is not a lot of literature on this topic, I will have to "interpret" the results carefully and critically. By all means, I will share any insight and data that I get out of it for others to see.
Again, I still think there could be value in this approach if you find that, for example, in all 3 tests your norepinephrine levels were very low... or very normal. I think this is good information to have ... we may be surprised in what we find, which could affect our choice in treatment ... or we may get nothing out of it. To me, it's worth a try since measuring is a fundamental part of the scientific method. A couple of additional thoughts I've run across in researching this ... you can form your own opinion about the validity ... *edit* Some concern over mail-order urine approach to measuring NT levels: *edit* I plan on trying the blood platelets-based test from Vitamin Diagnostics lab in New Jersey (referenced the Julia Ross link above). *edit* Last edited by Jomar; 04-12-2011 at 03:12 PM. Reason: per NT guidelines on new member posting links |
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#9 | ||
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Magnate
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ahhhhhhhhhhhhh
the plot thickens. |
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