Re-Visiting DM
 

I was taking 1/2 teaspoon of DM cough medicine from 2006 - 2008 for neuro protective purposes

I don't know if I got any neuro protection from it or not, but it did have a positive effect on my symptoms..I started taking my first dose at bedtime, and the next morning I felt really good..My symptoms started in my right leg, and that is where my dyskenisia started in the later years..I did not have dyskenisia back in 2006 - 2008

Anyway, I was saying how great I felt the next morning after my initial dose of DM..I was able to slip my right foot intro my shoe without touching it with my hand..It had been a few years since I had been able to do that, and it at first I was skeptical..Was it the DM or was it a fluke?..Well that continued for quite a while, so there is no doubt in my mind that DM was helping to manage my symptoms

Five days ago I had been sick and tired of dyskenisia, and there was a thread around here recently about DM and dyskenisia, so I decided to give DM another try, to see if it would tone down my dyskenisia..So I took a between a half and a whole teaspoon in the morning after meds, and take the same in the late afternoon..My plan was to take the DM before my meds kicked in, in the morning, and before I went off in the evening, because that is when I get dyskenetic..

So the results of this experiment are, reduced dyskinsia, as well as shorted intervals of dyskenetic episodes..I was having serious problems with freezing..I would be getting close to my kitchen table, and I would freeze..About to pass through a doorway and freeze..Narrowing passages, and freeze..My cell phone would ring, and if it wasn't in my pocket, I would freeze in anticipation of not being able to get to it in time, and sometimes it would only be 20' away..It seemed, the more urgent the situation, the worse the freezing got..My whole body feels weak when I go off, and my legs ache when I freeze, or take half steps to try to get from destination "A" to destination "B", and when I get moving the aching goes away..The past two nights I actually felt like the DM prolonged the effects of the Stalevo, beacuse I felt like I was still somewhat on after the evening dyskenisia, when I should have been off

My drug regimen hasn't changed in a while.So if I take my meds on time, 99 out of 100 times, I get the same results, so the DM is definately doing something

The question is....How long this last?..I will post updates occasionally

Good to hear from you Steve. I restarted my own experiment from several years ago just about four weeks back. I had not intended to go public with it for awhile, but "What the hell?" as they say. We might even fan the flames under an entirely new generation of Stealth Rodents once they begin to realize that this actually works!

And works, it do! I think that we should, as a group, chew this minor miracle up and determine its limits and identify any perils that we can find. And we must figure out how to use it and then get that info out into the ParkiSphere or whatever.

We should do this with the next creative collaboration in mind and show that a neglected rat can take his fate into his own hands if pressed. The stereotype of the weak but determined PWP taking Life by the throat can be very powerful. Heck we may start a revolution or a plot or a conspiracy or something.

OK. Enough of raging at Heaven - time to get to work. I propose that we at least consider trying to mimic how the "Gluten Files" were treated as a unit that could be swiftly deployed where wanted <Note that that is my observation and not that of the "curators" of those files and so I may be talking out of the ole' megaphone here.> My point is that we can be rats of distinction simply by keeping good records.

The importance of the DXM is not to be underestimated. It not only works, it does so on multiple levels! By this I mean that it does, indeed, put the brakes on PD (as well as a host of other disorders), it also works on the symptoms that rob us of so much of our lives. It makes me stronger, especially in my lower legs. Nothing else worked as months went by. But then DXM came to town. My legs feel stronger every day. There needs to be another option in that bag of tricks that we are handed at the neuro's office along with his diagnosis. The one that I was given extolled the wonder of the new miracle drug "Requip" and featured faux - elderly sex machines playing tennis while they rested between trysts. Or at least that is the message I received.

DXM, properly investigated and reported, can add another and even more important tool to our bag. And it has a dozen different functions that we can tap into. When we are asked for our advice for initial treatment it may be that we can direct our new litter-mates to DXM. We already have RLSmith as an example of halting PD and we have Steve for an average Joe benefitting from taking charge of the drug instead .

Enough pontificating
 

Now to work.....
Remember - No MAO inhibitors!

Off to a somewhat sloppy start a month ago due to a nasty cold but am seemingly over that.

As I have noted before, I suspect that my metabolism may be a bit wonky and that I may be more sensitive to DXM than some I once thought that the result of low liver enzymes (CYDP 450s or so) but now amnot so sure. So I began by diluting the standard DXM (from CVS generic DXM) to a 50% syrup and 50% water solution after a little trial and error. I would suggest that anyone starting this should begin by finding the lowest dose that has any effect. Then cut that dose in half and titrate back up. The reason for this approach is that we are working with and effect that may be lost as the dose goes up. It is hard for our Western minds to grasp, but more is not necessarily better. Also, if you find your "sweet spot" for awhile but then lose it, check to see if your dose has crept up from where it used to be and crank it back down first thing.

So, from this dilute mix I take a single drop (approx one ml) each night at bedtime. A single drop doesn't seem like much. But it can be. Trust me. :D

I am sleeping much better. No night terrors. Leg cramps down by half. Urine output down by half.

Had a bad cold about about mid-month whic scrambled things a bit but seem to have recovered.

Rick writes:

"My point is that we can be rats of distinction simply by keeping good records."

Yes. Yes. Yes.

There's the private side of white-ratting. You take something that you have good reason to believe to be safe: it makes you feel better, so you continue to take it; it makes you feel worse, so you stop. That seems a reasonable approach to me.

But, we can get so much more benefit from the process if we communicate and share our results. This is the public side of white-ratting, it requires:
- measurement;
- statistical analysis;
- controls;
- placeboes;
- blindedness, etc

Provided we, PwP, have the will, we can do all of these.

At the very least, can I urge people (white-rats, other PwP, non-PwP) to provide some data to my online PD measurement and analysis web site PDMeasure:

http://www.parkinsonsmeasurement.org/PDMeasure

This measures your side to side tap test score and stores the results anonymously in a database. The anonymous data is open to anyone to download and analyse.

Just imagine how much more impact it would have if we could quantify the effect of our white-ratting.

John

I'd like to point out that there are twenty drops approximately in a milliliter.

http://en.wikipedia.org/wiki/Drop_%28unit%29

The accuracy of converting drops to milliliters varies with the viscosity of the liquid. Things that are mostly water fit with this approximation.

There are approx. 4.5 to 5ml in a teaspoon. depending on the teaspoon used. So using a little graduated plastic cup is best.

Target pharmacies will give you a plastic syringe with both tsp and ml on them. I used mine for my cats.

Yes, it sure does work..I don't know if it would work for everyone, but it is still working for me..I took a little bit this morning, and I got dyskinetic for about two minutes, and I was on..I forgot to mention, that when my meds were going off for the evening, sweat was pouring off of me like rain..I have had a little bit of sweating, but nothing like it was before

I agree with you..If we don't think outside the box, nobody is going to do it for us...So there's two cheap things that I know that work...DMX and mucuna..It makes me laugh when big bad corporate pharma manufactures all these expensive pd drugs, that ain't worth the power to blow them to hell..Meanwhile, there are dirt cheap over the corner drugs, that work very good

What really is a riot, is that on the bottles of cough syrup it says "Do not take this drug if you have Parkinsons Disease"..Yeah...Don't take it..It might make you feel better..:D:D:D

I brought up DMX at a support group meeting , and I was cut off by the facilitator, and told that we aren't supposed take that stuff, if you have pd..I've about had it with support groups, the APDA, the PDF, PAN, and all the rest..After all these years of pumping millions of dollars into research, the only people who are benefiting from all of this, are the people who are employed by these organizations, the scientists who soak up the money with their research, and romance people with their smoke, but never produce any fire..And we get ****!!..And the best they could come up with is stuff like Azeilct, that they claim it is neuro protective..What a crock!!..They said the same thing about Mirapex, when it came out, and that was a big sham..A dirty marketing ploy is all it was

It is sad that something so harmless, as long as you aren't taking any MAOI medications, goes underneath the radar, or gets critisized by people who are taking pd meds, that are far worse for your body than DMX ever thought of being

Then there's mucuna...Mucuna is what is keeping me commercial fishing part-time..I mix a little more than one third of a teaspoon in some water, before I leave the house, and I'm good to go..And what I do is very hard work, but I can still do it for 3 - 4 hours per day, two or three times per week..And that's after 11 years of pd

So I ask you all.."What's in YOUR wallet? :p :D

Know Thy Enemy
 

If we do start attracting attention, one group to keep an eye on is the National Institute of Drug Abuse (NIDA). This bunch of right wingers have been so bent out of shape over the years by their inability to show serious harm from DXM that they long ago went over the edge into darkness. Some of the stuff that they claimed was laughable if it were not fueling their own propaganda. We can expect to run into them from time to time. But, enough of that for now.

I am not going to try to do a blow-by-blow approach but wil instead give "snapshot" reports. It is a start.
-Rick

They need to find a hobby or something..I'm sure there is much more important business to tend to

What is really laughable is the drug commercials they have on TV, especially that "low T" commercial..One of thie side effects is prostate cancer.. Geeez..I better get in line for that stuff before they run out!! :D What is the FDA thinking?..There must be a bunch of old codgers there, looking to make their last round up a little big horn..Hmmm..No pun intended, but it sure sounds like there was.....

Anyway..I had a short bout with dyskinesia last night and this morning, lasting no longer than 10 minutes, and that is good..No sweating, but felt a bit hot going out to warm the truck up in 20 degree weather..I wonder if my body temp goes up when Im shakin' and bakin'?

However, I have been freezing up, and my legs feel weak again, and it started to happen the night before last when I ran out of the "Maximum Strength for Mucus Relief", which is the CVS Tussin DM brand, and replaced it with the regular strength CVS Tussin DM..One of the differences between the two are, the viscosity..The extra strength pours like honey, and the regular pours like water..The extra strength has 200 mgs of Gaufenesin, and the regular strength has 100 mgs..They both have 5 mL tsp @ 10 mgs..So I am going back to CVS today and get bottle of the extra strength, and see if the freezing and the weakness in my legs goes away again

try VICKS NATURE FUSION cough syrup, only has DM

John-
I tried but the software took my survey data but showed no interest in my test attempts. Ideas?
_Rick

Rick,

It's great that you're using PDMeasure, not so great that there's been a problem. Whatever the cause it's in one way or another my fault. We'll get it working.

The good news is that you registered OK, and did Survey 1 OK.

The next step is to do Test 1, the side to side tap test. I've just done that on my account and it works fine.

This suggests the instructions were not clear or, less likely, that your process timed out before saving, or less likely still, that the server went down.

So, I'd be grateful if you tried again. You will have been automatically logged off by now, so please:
Sign In
Run Test 1
Do the tap test - you should see left and right hand scores.
Press Submit
Finally, you can see if everything has worked by pressing View Data and scrolling to the end. Your scores should be visible.

If that doesn't work, I'd suspect a portability problem. So, if things are still not working, please let me know your operating system (e.g. Windows 7) and browser (e.g. IE7).

Looking forward, you will want to extract the data for each of your projects. This is much easier to do if you tag the entries. You can do this in one of two ways. For short term trials enter your tag of choice in the Extra Information field of Test 1. For long term trials you can put a tag in the others field of the medications survey.

Just out of interest, the latest usage figures for PDMeasure are:
Survey 1: 108 (of whom 90 have IPD, 3 have other Parkinson's, 2 other illness, 13 are healthy);
Test 1: 521
Survey medications: 56

John

john-

Do you happen to rely on javascript? I block it but normally have an over ride option but not this time. Will try again over the weekend. -rick

It has now been 10 days since I started taking DMX again..During the past 5 days I have had a couple of tough bouts with dysiknesia, but the thing that has changed is the amount of time it lasts..It only goes on for 10 or 15 minutes, as opposed to 3/4 to 1 hour

Yesterday morning I had it for about 2 minutes..Last night as I began to go off I had none..This morning I had a few twitches in my right leg and I was on

I have been taking it shortly after my morning meds, and about an hour or so before I usually go off..I have been taking a very small amount..Just a tad more than enough to coat the bottom of that little cup that comes with the cough syrup is what I've been taking

The sweating has been minimal..The freezing has returned, but it is not as bad as it was..I would say it has improved by 25 - 30%$

Rick
 

Is this the thread you are looking for?

Yes, indeed, that is the one.
 

Thanks, Steve. I will probably never know where it went but I am glad that it came back. :)

This DXM is some of the strangest stuff that I have ever messed with. I have spent the last week using a mix of one part syrup with one part water and then taking a single drop of the resulting solution. And that has been too much, at least for me. A lot of positives- greatly improved sleep; almost zero cramping; legs feeling stronger; etc. And at least one big negative in the form of a strange hangover the next day. It takes me the better part of the day to get over what I had taken the night before. It seems like an hour on followed by an hour off.

<Lets pause just a moment and synchronize our watches. I am taking the single drop of the dilute about 10:00 PM or so. That is all within the 24 hour period. >

Last night I made up a new batch using nine parts water and one part syrup. I took a single drop about 11:00 PM and went to bed about mid-night. Some DK at first but went to sleep without much trouble. Awakened by rain 6:00 AM. Was wobbly and yearned to go back to bed but was able to force myself to function for a half-hour first. Slept soundly until 9:00 AM and began this dance.

I am going to follow my own advice and take a day or two off and try an even greater dilution.
-Rick

I am not getting the benefits I was getting during the first two weeks, but I had a few days where I had no dyskinesia whatsoever..I had a couple of bad days, but I was dyskinetic for about 5 minutes this morning, and about the same last night..I am not freezing as much as I was, and walking has improved when I am off..I am definately doing better than I was

This is the NEW and IMPROVED dextromethorphan thread
 

OK fellow rats, rodents, and related species-

This brings this part of our journey to its end. I will try to stay focussed and keep this together. This thread is for discussion of dextromethorphan in the treatment/management of PD in both macro and micro contexts. This also includes methylene blue in the micro-environment, turmeric and any other thing that functions in this way. Now to bring us up to date-


Quote:
Originally Posted by reverett123 View Post
I have done a little more experimenting and I am not certain that I am going further with it or not. Frankly, it is a little scary with othing to go on. But I will add what I have to the heap.

If you remember, I was following a hunch related to the extremely low concentrations reported in the earlier work. I set up a rather crude eperiment as follows:
a) I placed a single drop of DXM into a beaker and added 10 oz of water. I called this "Solution One";

b) I then placed one drop of Solution One into a beaker and added 10 of water to create "Solution Two";

c) Placed one drop of Solution Two into beaker and added 10 oz ofwater to create "Solution Three";

d) I repeated the procedure until I had created "Solution Six".

e) My first test had been of Sol One by taking a single drop on my tongue at bedtime. The result was stronger than expected and a little frightening. A general depressing of the CNS particularly respiratory function. It was alarming enough that I slept upright in bed that night lest I aspirate any vomit.

f) I tried again with Sol Four and still was uncomfortable.

g) It was only with Sol Six that I felt within a workable range.

So there you have it. May well be the most important thing in Western Medicine since moldy bread and we are the only ones who know.

It has parallels to Bruce Ames's work with methylene blue I think, the LDN, reported "step" effects of turmeric, and maybe others.

To the rest of you, unless you are really experienced with this kind of thing , I would suggest extreme caution. At a minimum start with a level of "Solution Ten" and have someone to keep an eye on you. Sit upright the first time too. Aspirating vomitus is a particularly undignified way to go.
__________________
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.

Steve how you?
 

Steve-
So now that we are past the holidays, how are you doing? PM me if you want.

-Rickb