Parkinson's Disease Tulip


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Old 01-24-2007, 03:51 PM #1
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Default Quackery detection...

...or, if it walks like a duck. (With apologies to daffy )

Another thread made me think about just what sets off my "Quack Detector" and I had to conclude that a part of it is almost unconsious. It also seemed like a good thread since all of us are vulnerable to the little man with the bottles at one time or another. So, do you have a rule of thumb or two that makes you narrow your eyes and say, in your best Bugs Bunny voice, "Wait a minute...." ?

Here's a couple of mine-

1- Does it sound too good to be true?
2- Does it involve me giving someone my money?

Obviously it requires a preponderence of evidence but you gotta start somewhere.
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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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Old 01-25-2007, 12:51 AM #2
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Default Rules of thumb

It seems that for practically every rule there are exceptions.

It seems that for every good thing there are counterfeits.

It seems that for every answered question there arises more questions.

It seems that for every truth there are perversions of that truth.

It seems that for every law there is a breaker of that law.

It seems that surrounding every scientific fact there are fictional embellishments.

It seems that without opposing forces cycles stop, yet by opposing forces motion stops.

It seems that the depth of our knowledge can be contained by the shallowness of our thinking.

It seems that if something sounds too good to be true it usually is, but many things that are true sound too good to be.

My rule of thumb is to investigate, and if it costs me some of my money then so be it.

It seems that most worthwhile things are not free.

michael b.

That's how it seems to me.

On the other hand, I have also lost my share of money and time to quackery.
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Old 01-25-2007, 02:00 AM #3
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I have nothing against experimenting a little but don't have money to try most of the suggestions. Most of it is "quackery" or we'd all be doing a lot better. Is quackery defined by it costing money, not approved, safe? If it helps for awhile is that quackery or placebo?

As much as I challenge the medical community and big pharmas to come into the 21st century regarding how they treat and view patients, the challenge is for them to work with us, not to do their job. The person with the illness is the real expert on the disease, no one else can be. But that doesn't mean you can cure it - you need other expertise to bring that all together. If you have a theory, or find something that works, one way or another to get it on a regular basis, it has to be approved. You can't rely on someone privately providing you with anything on a regular basis.

If something works over the counter, that's fine if checked out for safety or conflicts with other med.

On the other hand, there's nothing I'd like better than to have someone from this forum shout, "Eureka I've found it." I'll be right behind you.

paula
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"Time is not neutral for those who have pd or for those who will get it."
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Old 01-25-2007, 08:18 AM #4
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Default On the other Hand

This seems to be such an individualized disease that it will be practically impossible to cure unless each of us is involved in the process of determining what caused its onset in us. The very fact that this disease is a PROGRESIVE DEGENERATIVE disease indicates to me that whatever caused it to begin with is still there creeping its way through our brains. So far, I have not read any proposed therapies that address this possibility. If this is the case, then time is NOT on our side, and the future does not look pretty. If I am ultimately responsible for my own health, then I must be actively engaged in the attempt to restore that health.

Should I be cautious? Absolutely.

Should I do my homework? Without a doubt.

Should I confer with my doctors? You betcha.

Should I allow my findings to be scrutinized by my peers? Of course.

Should I expect my peers to follow me down my chosen path? NO WAY...NO HOW.

michael b.

Paula, thanks for your response. As usual, it was very well thought out.
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Old 01-25-2007, 03:22 PM #5
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Default michael7773 is right

Time is not on our side. If there is going to be any improvement or, dare I say it, a cure within the time frame that does us some good then it is almost certainly going to have to come from us. The whole White Rat thing is about this. Like Michael, I don't expect anyone to follow me where I go. I do, however, feel an obligation to come back and tell everyone what I saw down that particular road in hopes of giving them some benefit personally and all of us collectively.

I feel certain there is a cure already out there in the published literature waiting to be found. It's something in the way of an herb or supplement (or combination) because otherwise Big Pharma would be all over it. If only we had 1000 PWP in a coordinated effort at self-experimentation..... Hm.....????

You know, the way things are done is seldom the only way to do things and often not the best. And the most advantageous way for Big Pharma with all the money is not going to be the most advantageous way for a Parkie watching his life drip through his fingers. The latter group needs speed even more than it needs caution. It's similar to the way botanists are forced to evaluate medicinal plants in the rain forest as it is vanishing. Down and Dirty.

-Rick
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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.

Last edited by reverett123; 01-25-2007 at 03:25 PM. Reason: typo
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Old 01-25-2007, 03:53 PM #6
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Rick with complete sincerity I say ''GO for it". All areas need to be covered and I appreciate your posts. My neuro thinks I'm crazy because of your wrap posts - I went in looking like a mummy.

paula

Edited to add: also Michael, who has been experimenting and researching for years, along with Ron Hutton and all the White Rat contributors.
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Old 01-26-2007, 08:56 AM #7
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Default Maybe there is a drug available now to halt PD progrssion.

Michael posts earlier that he is not aware of any therapy to slow or halt PD progression. I believe there is a therapy, it is an off-label drug, naltrexone LDN, taken at a low dose. I have been taking LDN for 31 months now and do not appear to have progressed. Granted I do take low levels of Sinemet and Mirapex so I can't say for certain LDN works as claimed. Besides the many anecdotal claims from the MS community on LDN, there are studies from the NIH showing how naloxone and other opioid receptor antagonists like naltrexone and dextromethorphan can protect the brain from disease causing neuro-inflamation. LDN is a relatively cheap drug with low side effects, the drug companies can't make any money from it. For MS, they would much rather sell the very expensive CRAB drugs that have serious side effects and not do the expensive clinical trials to show if LDN is effective or not. I won't know for years maybe if LDN works for my PD, but it's worth doing if only for my peace of mind. LDN is worth a look, I can post more info if anyone is interested. Regards, Ashley

Michael post:
"This seems to be such an individualized disease that it will be practically impossible to cure unless each of us is involved in the process of determining what caused its onset in us. The very fact that this disease is a PROGRESIVE DEGENERATIVE disease indicates to me that whatever caused it to begin with is still there creeping its way through our brains. So far, I have not read any proposed therapies that address this possibility. If this is the case, then time is NOT on our side, and the future does not look pretty. If I am ultimately responsible for my own health, then I must be actively engaged in the attempt to restore that health."

http://www.lowdosenaltrexone.org/index.htm
http://skipspharmacy.com/ldn.php

http://www.ncbi.nlm.nih.gov/entrez/q...&dopt=Abstract
http://www.ncbi.nlm.nih.gov/entrez/q...&dopt=Abstract
http://www.ncbi.nlm.nih.gov/entrez/q...&dopt=Abstract

Last edited by Wittesea; 03-13-2007 at 02:10 PM. Reason: edited at members request
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Old 01-26-2007, 09:58 AM #8
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Default What a coincidence, Ashley

Just a few hours ago I was reviewing some information that approached what you were referring to from the opposite side of the tunnel. I was reading Prof. Illingworth from Leeds University concerning their findings on substances that cause inflammation , among other things that might cause Pd and other neurological diseases.

We might just beat the illness that has befallen us yet. Thanks.

michael b.
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Old 01-26-2007, 10:54 AM #9
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Default about inflammation

If you haven't already, read the "Bacterial toxins" thread. A lot of things click into place. LPS induced inflammation isn't the whole picture but I would wager it to be at least half. It is particularly interesting how so many of the "quirks" of PD can be explained by it. Rotenone, manganese, mercury, estrogen, sleep problems - it's all there. In fact, if you do read it and there is a "quirk" that I have not accounted for, please let me know. I tried to think of them all but I am sure I missed some. Thanks - Rick
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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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Old 01-26-2007, 11:18 AM #10
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Default Inflammation is inevitable

On the cellular level, as the cell becomes weaker and weaker, ATP levels decrease, processes shut down, hydration is lacking, waste builds up in the cell and inflammation occurs. Then, if rehydration does not occur, inflammation will run rampant, and hibernation, apoptosis or necrosis will occur. It is just a question of when.

michael b.
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