Parkinson's Disease Tulip


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Old 11-04-2009, 10:05 AM #1
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Default White rat report. DXM as therapy.

A lot of new faces here, but you will get used to me.

I think that I have found something valuable and want to pass it on. It has, thus far, done more for me than anything I have found. Dextromethorphan (DXM) is the ingredient in the most widely used cough syrups in the US. It is a cousin to the chemical used in the LDN protocol and has long been used by a few on this board in that capacity.

However, in reading the literature, I realized that it was capable of much more. In fact, if I can sustain the effect, I will have to call it equal to either sinemet or requip, the two drugs that I am most familiar with. I realize that that is a rather bold statement. But I am beginning to believe it.

I will go into more detail later, but to give you an idea of the potential, I am going to paste in an excert from a message to a friend this morning:

<<Begin quote>>
I began anew yesterday and took a quarter tsp of DXM in the morning and have done so again this morning. (A moment to clarify. Cough syrup is standardized at 15 mg per tsp and the suggested dose for cough is 30 mg every six hours with a max of 120 mg per 24 hrs. I am taking a single 4 mg dose each morning at present. One-thirtieth of the label max. Even if my metabolism is slow (which I suspect that it is) that leaves a good safety margin.) I am going to start talking in terms of "mg" rather than "tsp" so remember that one tsp equals 15 mg.


So, having taken 4 mg yesterday morning, I had a pretty good day. No particularly bad periods until evening and they were better than a couple of weeks ago. In fact, I am going to invent a unit of measurement for my overall condition. I will call it the Misery Index and define it at 100 two weeks ago and ten yesterday. At 100 I was taking large amounts of medication on a two hour schedule and getting poor results. I was regularly going Off at the end of the two hour window with Freezing. It was common for it to require two hours or more to get back On so I would "lose" an entire cycle. This was typically the state of affairs in the afternoon. Mornings were better and evenings worse. It was not unusual to be forced to crawl to bed at least once a week. Similarly, it was not unusual to go Off with Freezing in public as morning turned into afternoon. On one occasin I was forced to crawl out of my bank. Loss of bladder control via urge incontinence happened as much as twice a week. Sleep was around four hours nightly with early awakening disrupting my med schedule. It was common to find myself cutting my day short to "rush" home as I felt the first signs of approaching Off. In short, I was a sad puppy and that state is an MI of 100.

Yesterday, however, was an entirely different matter. No true Off until 10:00 PM. Medications on a 3 to 4 hour cycle. No other problems. I even did some yard work. That's an MI of 10.

Sorry to go on so, but as I did it I realized that it was an opportunity to bring some order to the mess and was writing it for me as much as for anyone.

I slept well (7 hours), awakened at 6:00 AM and was On in 45 minutes (was 1 to 2 hours). BP = 136/87. Took 4 mg DXM with a 10/100 sinemet plus a 50/200 sinemet CR plus 8 mg requip. It is now 9:30 AM and still fully On.

<<<End quote>>>

I will elaborate on this later today....
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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 11-04-2009, 10:14 AM #2
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Default An interim caution

Don't jump ahead and try anything until I can finish. In particular, do not do anything if you take an MAO inhibitor as it could cause serious problems. Selegeline, deprynl, etc. Also, there is a wide range of metabolic rates to be taken into account.
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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 11-04-2009, 11:32 AM #3
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Default Effect upon brain chemistry

J.S. Hong has made a good case for the neuroprotective effects of DXM. Among other things, it blocks the runaway microglial reaction to LPS.

A more recent paper is what caught my eye, however-

1. Indian J Exp Biol. 2007 Aug;45(8):712-9.

Effects of dextromethorphan on dopamine dependent behaviours in rats.

Gaikwad RV, Gaonkar RK, Jadhav SA, Thorat VM, Jadhav JH, Balsara JJ.

Using rats, it was found that a low dose of DXM :
"The results are explained on the basis of dextromethorphan
(15-75 mg/kg)-induced blockade of NMDA receptors in striatum and substantia nigra
pars compacta. Dextromethorphan at 15 and 30 mg/kg, by blocking NMDA receptors,
activates nigrostriatal dopaminergic neurons and thereby potentiates
dexampetamine stereotypy and antagonizes haloperidol catalepsy. Dextromethorphan
at 45, 60 and 75 mg/kg, by blocking NMDA receptors, releases 5-HT and through the
released 5-HT exerts an inhibitory influence on the nigrostriatal dopaminergic
neurons with resultant antagonism of dexampetamine stereotypy and potentiation of
haloperidol catalepsy."
My translation is that low doses act on NMDA receptors to increase dopamine but as doses increase the effect tips over into production of serotonin. The former makes us On and the latter makes us Off.

The trick is to get enough to trigger the former without slipping into the latter and that's what I have been working on.

More later.
Department of Pharmacology, Krishna Institute of Medical Sciences, Karad 415 110,
India.
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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 11-04-2009, 02:19 PM #4
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Default Brand

Would you mind sharing which brand you use?
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Old 11-04-2009, 04:40 PM #5
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Default Brand and dosing

So far, I have gone through a bottle of CVS generic "Maximum Strength Tussin" and am presently using Robitussin PM. The only critical thing is to avoid the ones that have added active ingredients. The active ingredients shold be only "Devtromethorphan HBr".

Now, as to dosing. It is a little complicated due to two things:
1) there is a "narrow therapeutic window"and while a little is enough, a little more is too much, and
2) there is a wide range of metabolic rates among individuals.

The latter is especially important. Roughly ten percent of the population are "slow metabolizers" and I seem to belong to that group. A dose that would normally be gone in four hours might take four days for me. If I am taking it as per the bottle, the levels in my blood are going to go up pretty quickly and tip me into a major Off. that is going to be true of everyone, though. The variable will be how quickly your own liver breaks it down balanced against how often you take it and how much. The only way to handle this is trial and error.

In my own case, I began about a week and a half ago taking about 4 mg 4x per day. Note that this is about what i suggested for a single dose. Day One was great but by Day Three things were falling apart. Further research turned up the paper in my first post and things made sense again. So I laid off it for a couple of days and have started again with 4 mg each morning. My goal is to find the "sweet spot" for my particular metabolism. Every individual will have to do something similar, but it should be easier with a normal metabolism.

those who have been taking a single dose at bedtime would not notice the effect since a normal metabolism clears it in about four hours. So, if anyone tries this, I sure would like to know.
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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 11-04-2009, 04:45 PM #6
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Thank you. You saved me a lot of eye squinting reading labels.
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Old 11-07-2009, 02:57 PM #7
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Default It is still working

This really is something special. I will keep at it and bump this up from time to time.
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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 11-07-2009, 10:46 PM #8
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Quote:
Originally Posted by reverett123 View Post
This really is something special. I will keep at it and bump this up from time to time.
Rick; This is really great! Please do keep us updated on how things progress.
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Old 11-08-2009, 02:50 PM #9
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Default A new possibility

DXM works on multiple levels. That is a little unusual for PD.
1. The low dose at bedtime, if I understand, works via manipulation of opioid receptors.
2. Anti-neuroinflammatory action works via the immune system.
3. BBB protection works through a route unknown to me
4. The amplification of dopaminergic circuits, which I'm exploring, seems to work via antagonism of the NMDA glutaminergic receptors. Why that makes such a difference in my capabilities I don't know. The important part is that NMDA antagonists make a positive change in PD symptoms. That is what happened when the PWP who was a former stuntman went to a concert with friends, took Ecstasy, and found that he could do acrobatics again.

Ecstasy is an NMDA antagonist as is PCP and a number of other illegal drugs. There are few such that do not have serious side effects. DXM is one. But there is one more.

Theamine is an amino acid found only in tea and one type of mushroom. It is also an NMDA antagonist and is the reason a cup of tea mellows you out while coffee sets you to buzzing. Japanese researchers have tried to determine the maximum safety level with no luck because it seems to have no toxicity.

If theamine works similar to DXM, then the problems of drug interactions, metabolic differences, and dosing all vanish. There isn't a lot of research on it and PD, but what that does exist is positive. And I switched to it from DXM last night and this morning and it does, indeed, seem to be doing the same way as DXM.

More as things develop.
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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 11-08-2009, 06:16 PM #10
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Default Well, that didn't take long

It wasn't an hour after that last post that I crashed into a strong Off similar to the "old days". It had been about 32 hours since the last DXM. During that 32 hours, I had taken 3 capsules of theanine at 100 mg each (2 yesterday and 1 today).

It was a deep Off but I took requip and sinemet and a qtr tsp of DXM and was back On in an hour. Much better than before.

So, what does that tell me? Theanine (T) can't substitute for DXM at the dosages I was using? That the DXM cleared my system in 32 hrs instead of four to six? That once stabilized on the DXM that it might be worth experimenting with T? (BTW, there was a nice little buzz with T )
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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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