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Old 09-21-2013, 09:35 AM #21
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Lab rat,

An important point.

1. you need to take objective measurements, before, during and after your trial.

2. you need a "sugar pill". For instance, 1 part apple cider vinegar and 9 parts orange juice is tested against 1 part malt vinegar and 9 parts orange juice. All cooled to 5 degrees C.

3. for each day get an assistant to make each of the two preparations, put them in opaque, sealed bottles. Label them according to a dice throw. Then absent themselves.

4. the tester throws a dice to determine, which bottle to use.

5. the tester is not told the contents of the bottles he/she took until the end of the trial.

If an assistant is unavailable, the tester can make the mixtures as before. This time, though the label is made too complicated to easily notice the difference, e.g. rr3eerere££RREReddffd6666u:;' and rr3eerere££RREReddfdd6666u:;'

John
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Current meds: Stalevo(75 mg) x 5, ropinirole xl 8 mg, rasagiline 1 mg
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Old 09-22-2013, 09:43 PM #22
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Quote:
Originally Posted by reverett123 View Post
HarryM=

Thanks for the data. Negative reports are as important as positive.

A question or two if I may. Would you consider yourself to be Senior Onset or Young Onset? And how long have you had symptoms?

Have you observed any patterns in your symptoms reacting with your eating schedule? For example, if you eat immediately upon arising in the morning are things different than if you wait two or three hours?

Again, thanks.
Had a minor tremor in left hand in 97/98 (Iwas 56 then) and diagnosed PD in 2005.

Diet & meal times ARE CRITICAL with me. Blood sugars drop & the tremors kick in BIG TIME! As my sugar levels up or down, so goes my tremors.

I have been type 2 diabetic for almost 30 yrs/
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Old 09-23-2013, 09:24 AM #23
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John-
I agree, of course, but as a simple rat with a research budget that allows me to buy fresh litter for my cage only once a month.....

HarryM- We are comparable. My journey began with a tremor in my right hand in 1992 (age 39) and dx in 2000.

The diabetic diet approach has always seemed to me to be a major clue if it could only be untangled. I started on this current exploration when my increasing lack of stability led me to look at glucose and insulin issues again. This led to the effects of vinegar on diabetics which, in turn, led to the post-prandial reactive syndrome, adrenal issues, and an older area of interest, the ACE inhibitors (vinegar in particular). And over in the corner are some potassium issues that I am pretending I don't see.

But it continues to work for me.



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Originally Posted by HarryM View Post
Had a minor tremor in left hand in 97/98 (Iwas 56 then) and diagnosed PD in 2005.

Diet & meal times ARE CRITICAL with me. Blood sugars drop & the tremors kick in BIG TIME! As my sugar levels up or down, so goes my tremors.

I have been type 2 diabetic for almost 30 yrs/
__________________
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 09-24-2013, 08:38 AM #24
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Rick,

You write:
"I agree, of course, but as a simple rat with a research budget that allows me to buy fresh litter for my cage only once a month.....".

The double blind testing approach that I suggested is very cheap.

In your case, even if you throw away the unused bottle at each session, you are just throwing away some orange juice and possibly, a teaspoon of apple cider vinegar.

I'd be interested in seeing side to side tap test measure scores, both before and after the meal, and with and without the apple cider.

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

Last edited by johnt; 09-24-2013 at 08:44 AM. Reason: Posted before completion of last paragraph.
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Old 09-24-2013, 08:48 AM #25
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Doesn't vinegar thin the blood?
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Old 09-25-2013, 11:44 AM #26
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Talking Typos result from a fast mind burdened with a sticky keyboard

johnT-

If you will get me started (include the URL one more please) I will begin on this. I want to exclude the initial trials to isolate the learning curve but I would like to retain it. It might become valuable to have the de novo data at some point and you only get one opportunity.

I should be able to get comfortable with it this afternoon and begin to get serious with it tomorrow. If you have a minute I would like to discuss just what I intend and then ask for your comments. Then we merge the two visions and begin.

I generally follow a set pattern during the day and would like the bsseline to reflect that. For example, I normally rise at 6:00 AM (sometimes as early as 4:00 AM). I take the initial meds (C/L only) then and spend the usual one-hour wait online. Therefore, does it seem sensible to you to run an initial test in this period?

The next marker on my daily journey is when the magic threshold is crossed and over a five minute period Samson raises his head and looks up into the shadows of the temple's roof structure, thinking "This darned temple ain't all that strong,,," (I bet you didn't know that Samson was a Southern boy, did you?)

So it is at that point that I first feel human again and I want to have data for the future. Typically this could be anywhere from one to two hours after I wake up. We need to keep the confusion of recording times between events ("relative" times? or "elapsed" times?) and times referenced to Greenwich ("absolute"?) or ("local"?).

Therefore- "I arose at 6:00 AM today having retired some five hours before and spent the next three hours trying to kick my way out of the paper bag which held my mind." This is anchored in the space-time of the Universe (6:00 AM) but is then extended into reality in both directions ("five hours before" and ("the next three hours"). We instinctively know our own relative location as well.

And how many angels CAN dance on a pin, anyway? I don't enjoy mind numbing minutae but this kind of stuff at the beginning of a project of any sort can totally wreck the whole thing.

So where were we? We were standing in the brisk early-morning breeze at 9:00 AM approximately 7000 miles West of Greenwich and so on. But you see what I mean.

So, back to the shakedown trial, My typical day then begins at 6:00 AM with the first pill and incubates until about 7:00 AM with the second set of meds due at 8:00 AM. Assuming there is no objection I thinkthat I will try simply to run a trial every two hours in lockstep with the med schedule. That will include 6:00 AM; 8:00 AM; 10:00 AM; Noon: 2:00 PM; 4:00 PM; 6:00 PM; and 8:00 PM. That will be my starting data for any experiment that I run and should allow a certain amount of synergy as time goes on.

As I do this I intend to collect whatever auxillary data that may be available. For example, I hope to persuade my poor little finger tips that a few sticks for science is worth it. This will not be featured in the current experiment unless somethng exciting comes along, but any data sitting there just asking for it needs to be collected. And since the whole thing started with the assumption of some form of hypoglycemia, it still may light up the sky.

I also should try to get some blood pressure data but, unfortunately, my cuff is becoming increasingly undependable. I will gather it as much as I can but we would probably want to segregate it.

But things like the glucose levels are different and need a classification to match.

I suppose that I should be conservative tomorrow for the sake of the future and not add any vinegar or DIY dbs to the mix. But the day after I will try some more interesting things.

That mean that we need a big old MISC section. You ever notice that the "miscellany" is often a gold mine? It is where the good stuff goes. I guess that that says something about Rigid Science but who knows what.

-Rick

PS= I started out as a PM to you but think I will make it a general post in an attempt to "stir the rats" as Lyndon Johnson was fond of saying.
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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 09-25-2013, 12:31 PM #27
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Quote:
Originally Posted by bluedahlia View Post
Doesn't vinegar thin the blood?


Apple cider vinegar, a popular folk recipe embraced by many alternative medicine practitioners, contains acetic acid. Acetic acid can have harsh effects on skin and mucus membranes in the mouth and throat, and it can also affect tooth enamel. Apple cider vinegar can also interfere with the absorption of nutrients such as potassium, as well as increase the effects of some medications. Drinking apple cider vinegar every day, especially if you don't dilute it enough, increases your risk of developing side effects.
Interested in losing weight? Learn more about LIVESTRONG.COM's nutrition and fitness program!
Mucus Membrane Injury

The inside of the mouth, the throat and the esophagus, the tube that leads to the stomach, are lined with mucus membrane, a type of tissue that can burn when exposed to acid. Taking apple cider vinegar every day, especially if you don't drink enough water when taking it in tablet form or if you don't adequately dilute the liquid, can cause throat pain and make it difficult to swallow, according to the website eMedTV. The site also notes that there have been reports that apple cider vinegar tablets can cause burns, which can cause permanent damage to the throat or esophagus. Heartburn and nausea are also possible side effects.
Erosion of Tooth Enamel

Over time, the acetic acid in apple cider vinegar can erode the enamel on your teeth, increasing your risk of developing cavities. Flushing the pills with lots of water or diluting the liquid can help reduce this risk.
Low Potassium

Apple cider vinegar can cause potassium levels to fall, according to eMedTV. Low potassium, medically termed hypokalemia, can cause heart arrhythmias, muscle weakness or breakdown, constipation, fatigue or paralysis that can interfere with breathing. If you take medications that can cause low potassium levels, such as diuretics, do not take apple cider vinegar without talking to your doctor first.
Blood Thinning

Apple cider vinegar can act as an anticoagulant, or blood thinner. If you already take blood thinners or if you have problems with blood clotting, do not take apple cider vinegar without your doctor's approval. You could develop spontaneous bleeding or hemorrhage after injury.
Blood Sugar Effects

Apple cider vinegar improved insulin sensitivity and lowered blood sugar levels in an Arizona State University study reported in the January 2004 issue of "Diabetes Care." Acetic acid may have effects similar to anti-diabetic drugs, such as metformin and acarbose. While this has benefits, it could also cause an increase in episodes of hypoglycemia, or low blood sugar, in diabetics. If you have diabetes, ask your doctor about how to take apple cider vinegar and monitor blood sugars carefully to avoid hypoglycemia.

Read more: http://www.livestrong.com/article/50...#ixzz2fvjfgGLf
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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 09-25-2013, 04:22 PM #28
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Rick,

Thanks for your post.

PDMeasure stores PD data, such as date of diagnosis, and test data, which comes from an online test that measures your hand/arm speed.

To use PDMeasure, start at: http://www.parkinsonsmeasurement.org/PDMeasure/

If you've not already done so, you will need to register and do survey 1 and a meds survey (10 minutes max).

Thereafter, you will just need to Sign In to do Test 1 (the side-to-side tap test, 2 minutes max). This will give you a left and right hand score (high is good). The session will be stored in a database. Go to View Data to view the raw data and Statistics to view derived data. This is probably the most useful. It gives all your results in one section.

When you do the test Question 4 asks for extra information. This allows you to tag data which gives great flexibility. You may like to use this to show what sort of test you're doing, e.g. ACV to denote apple cider vinegar, or ACVB to denote a double blind test, or to add blood pressure data ACV:BP120/80. You can copy and paste all the data with a tag and plug it into Excel to do whatever processing you want.

You're right about the learning curve. I'd recommend saving the first 10, but to ignore them when you do your analysis.

If you want any help, please get in touch.

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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Old 09-30-2013, 12:06 AM #29
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Rick,

i don't know that i am quite on board with the cider vinegar, I do agree there is most definitely a link to glucose and food intake. If I weren't so lazy and/or pig headed I would actually document symptoms and dosage efficacy around meal times. Alas, I am unreliable in providing any real substantive contribution here.

I can add in the loosest of anecdotal terms, that my levodopa response has changed. I used to have an even response to levodopa; I could take it on an empty stomach or before/after a meal with no protein issue. I now notice two things: around the time I have those hypokalemc like attacks I noticed they either happen after I eat, or when I have "bottomed out" where I feel my stomach is totally empty. It is almost like I have a big blood sugar crash that triggers some sort of adrenaline and cortisol surge that leads to a panic attack, and I become literally frozen like a deer in the headlights. I am controlling it by taking an SSRI and when it starts to happen by regulating my breathing. I actually hyperventilate, and the levodopa does not work until I start breathing normally again.

Coincidentally, I just received notice of the publication of a new study showing a link (Harry will love this) between Vitamin D3 deficiency, Renin-Angiotensin, and Insulin resistance. I am linking to that abstract and another interesting older article on insulin, renin-angio and inflammation.

Vitamin D, the renin-angiotensin system, and insulin resistance
http://www.ncbi.nlm.nih.gov/pubmed/18193490

Improvement of insulin sensitivity by antagonism of the renin-angiotensin system.
http://www.ncbi.nlm.nih.gov/pubmed/17581838
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Old 09-30-2013, 04:26 AM #30
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Laura-
Yes this is indeed a puzzle and you are on the money with your observations. It is 4:00 AM here so please the typos etc. And BTW "Health Unlocked" (UK PWPs) had a brief exchange about the value of using "pickle juice" last week. Unfortunately they have one of the worst forum software packages I have ever seen and I can't find the thread.

What we are seeing used to be called by several names and caused a lot of confusion that lingers even now. "Reactive hypoglycemia" was a common one. Even today some doctors refuse to admit it exists. The current name of favor is "post-prandial reactive syndrome". (Glad to see that cleared up. I feel better already. )

I think that this is a symptom that all of us are in danger of developing because it seems to be a possible side effect of L-dopa use. As we have discussed before, Ldopa has been known to screw up our glucose handling since 1930 but no one saw it as a problem.

So, here is the rundown as I see it today. Things are definitely in flux at present and this will change, but for now...

Number one priority for any simian is to keep the brain supplied with fuel (i.e. glucose). We have evolved clever ways of doing this as well as "fail safe" backups. The primary way of supply is by maintaining a narrow range of glucose in the blood. If it goes above the range ("hyper-") we send out insulin ordering the cells (especially the long muscles) to suck up the excess. And if it goes too low ("hypo-") an order goes out to the liver to convert the glycogen stored there into glucose and to add it to the bloodstream, pronto.

<To interrupt a moment- Doesn't the ketogenic diet fit in here somewhere?>

So a part of us (lets call it the "Homer Simpson") is constantly monitoring these levels. But, in addition to the levels themselves, we are also watching how fast they change. If glucose starts to nosedive that is a major warning, regardless of what level it starts from. Since this is most dangerous when it does start low, however, the response is no-nonsense and a bit drastic - it turns on the adrenaline/noradrenaline spigot which causes, among other things, the release of an emergency ration of glucose. But it is the flood of adrenaline that we notice because as you mentioned, it can be scarey as hell.

And it can happen as a false alarm as well. Remember that the alarm goes out in response to the *rate* of change ignoring the level at which it occurs. So if it begins at, say, fifty, then we have a problem since we pass out around forty. But if it begins at, say, one hundred, then our systems have time to correct without the panic. But some of us don't take the chance and our "Homer" hits the alarm and we are flooded with adrenaline for no apparent reason.

Well, the sun appears to have come up so I will stop there for now, but will add briefly-
1)The vinegar has been shown to reduce the glycemic index by about fifty percent, thus making tings more stable.
2) The emotions are a *major* factor here.
3) It has only been a couple of days, but ginseng (panax) shows some promise. Stay tuned.

Quote:
Originally Posted by Conductor71 View Post
Rick,

i don't know that i am quite on board with the cider vinegar, I do agree there is most definitely a link to glucose and food intake. If I weren't so lazy and/or pig headed I would actually document symptoms and dosage efficacy around meal times. Alas, I am unreliable in providing any real substantive contribution here.

I can add in the loosest of anecdotal terms, that my levodopa response has changed. I used to have an even response to levodopa; I could take it on an empty stomach or before/after a meal with no protein issue. I now notice two things: around the time I have those hypokalemc like attacks I noticed they either happen after I eat, or when I have "bottomed out" where I feel my stomach is totally empty. It is almost like I have a big blood sugar crash that triggers some sort of adrenaline and cortisol surge that leads to a panic attack, and I become literally frozen like a deer in the headlights. I am controlling it by taking an SSRI and when it starts to happen by regulating my breathing. I actually hyperventilate, and the levodopa does not work until I start breathing normally again.

Coincidentally, I just received notice of the publication of a new study showing a link (Harry will love this) between Vitamin D3 deficiency, Renin-Angiotensin, and Insulin resistance. I am linking to that abstract and another interesting older article on insulin, renin-angio and inflammation.

Vitamin D, the renin-angiotensin system, and insulin resistance
http://www.ncbi.nlm.nih.gov/pubmed/18193490

Improvement of insulin sensitivity by antagonism of the renin-angiotensin system.
http://www.ncbi.nlm.nih.gov/pubmed/17581838
__________________
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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