[Jaye]

Funny to me that so harmless a substance has so many street nicknames: Orange Crush, Triple C's, C-C-C, Red Devils, Skittles, DXM, Dex, Vitamin D, Robo, Robo-trippin', Robo-dosing. One visitor from another forum speaks of the possibility of attracting the store's attention to higher-volume use--what about the effect of higher dosage on the human body? Will our friends here get habituated to their small doses and start taking more and more to get the same effect? I asked about long-term ill effects on another thread and received no reply, so perhaps this aspect has been discussed to death while I was out having the flu.

Are we sure we want to be recommending continuous use of a non-standard application of a drug to any and all seekers? Do folks really think their doctors don't already know about these effects of this drug? I'm not much for fads, and I believe the scientific method is an improvement over the dark ages, so count me out.

Readers (a.k.a. lurkers to some), please be aware that we have no doctors here and only one research scientist that I know of. Please discuss or at least mention your use of this or any "additional" or "supplemental" medication with your PD doctor.

Personal comment: By my estimate, we've all been "cured" by wishful thinking about once a week since my diagnosis eight years ago. Somebody get out there and try all the other cold and flu remedies, too, now that our archives are gone. Yes, real drugs that can help us are on the shelves. Do you think the scientific community likes it that way? They are new, scientifically developed drugs going untested for lack of clinical trial volunteers.

Jaye

[burckle]

Jaye:

I'm on your side.

Lloyd

[reverett123]

First let me make myself, at least, perfectly clear- despite my bouts of enthusiasm I agree with Jaye up to a point and I do not urge anyone to do what I do just because I say so. If you are not comfortable doing your own research and making your own decisions then stay on the main roads. There are dangers. I myself nearly did myself in a few months back because I forgot that turmeric was deadly to H. pylori and the toxins from the dead germs in my stomach weren't eliminated quickly enough.

That being said, I'm not going to stop for the simple reason that I am choosing what is, IMHO, the less dangerous path - for me. Our current choices from the doctors all have real dangers and only buy time while doing damage both known and not.

Do your own research. If you don't at least know how to use Medline then you shouldn't experiment. In the case of DM, there is enough there to make me feel that the benefit-risk ratio is high. Addiction to DM is unknown. Habituation is a low possibility. It has been in use in mass quantities for fifty years by all age groups. Recreational use at massive doses has produced nothing alarming. And so on. So I judge risk low. But it is never zero.

Evidence of benefits include research from the 90s that showed relief of dyskinesias, a good start. Other factors such as the effect on dopamine reuptake offer promise. Steve's and Robert's experience is encouraging.

So I am going to experiment with it - carefully and cautiously. Because, in addition to the risk-benefit, there is the ever present reality that 1) we all are on the clock; 2) nothing currently within reach looks promising; 3) there is a whole class of "orphan" substances that do not economically appeal to the researchers.

So some of us are pioneers. The guys up ahead. With the arrows.

Originally Posted by Jaye

Funny to me that so harmless a substance has so many street nicknames: Orange Crush, Triple C's, C-C-C, Red Devils, Skittles, DXM, Dex, Vitamin D, Robo, Robo-trippin', Robo-dosing. One visitor from another forum speaks of the possibility of attracting the store's attention to higher-volume use--what about the effect of higher dosage on the human body? Will our friends here get habituated to their small doses and start taking more and more to get the same effect? I asked about long-term ill effects on another thread and received no reply, so perhaps this aspect has been discussed to death while I was out having the flu.

Are we sure we want to be recommending continuous use of a non-standard application of a drug to any and all seekers? Do folks really think their doctors don't already know about these effects of this drug? I'm not much for fads, and I believe the scientific method is an improvement over the dark ages, so count me out.

Readers (a.k.a. lurkers to some), please be aware that we have no doctors here and only one research scientist that I know of. Please discuss or at least mention your use of this or any "additional" or "supplemental" medication with your PD doctor.

Personal comment: By my estimate, we've all been "cured" by wishful thinking about once a week since my diagnosis eight years ago. Somebody get out there and try all the other cold and flu remedies, too, now that our archives are gone. Yes, real drugs that can help us are on the shelves. Do you think the scientific community likes it that way? They are new, scientifically developed drugs going untested for lack of clinical trial volunteers.

Jaye

[michael7733]

Just a quick interruption here...which archives are you referring to? Are these the ones?

Brain Talk?

ok carry on...

michael b.

[stevem53]

With all due respect Jaye..DM has been tested by the scientific community..I think its safe to assume that a half teaspoon of cough syrup daily is harmless..There are no long term effects of it..Abusing it is whole another thing altogether..Im not encouraging anyone to take DM..I have had great results with it, and continue to have great results with it, and I feel it would be selfish to keep it to myself..As far as Im concerned..what is worse than long term Sinamet use especially when you reach near maxed out doses?..Whats worse than high doses of Mirapex when one can either doze off at the wheel and get in a fatal accident, or go to the casino or home shopping network and squander their life savings?..How about Requip?..Makes most folks sick as a dog..DM has been studied, although not on what we would call a "conventional" scale and the results of these studies suggest that DM is potentially neuro protective..Does a corporate pharma company have to do the research for it to be deemed either safe or effective?..If we ever think that some corporate pharma company is going to put forth a study or a clinical trial on a product as dirt cheap as DM, then we have a long long wait, because theyll be implanting pumps in our abdomens and drilling holes in our heads, using us for guinea pigs and then telling us "sorry theres no profit in this, and oh by the way..this may cause leisons on the brain..Have a nice day folks!..Sorry.. ..There isnt any profit in it for corporate pharma to study it, especially if it does work..It would cost them money to admitt to that

Take LDN..There are alot of patients who are taking this drug in small doses, and not just pd patients..and they claim success..There are some Drs who Rx it for MS, and pd..My Dr wont Rx it, and that does not mean that he is right and that I am wrong..Hes not even willing to research the research that has been done on it..And then he tells you stuff like.."You may still be swinging a golf club at 60!..Sure..I may be crawling across the floor to the John by then too..Im not gonna wait for the chain of righteous command to end this nightmare, or to make my life more pleasant..Ive already seen a taste of how they have our best interests at heart with the GDNF debacle, and I choose not to sit and wait for those types to come to my rescue, because it aint gonna happen in my lifetime..The only reason why I chose DM over LDN is because DM is easier to get, and is a simple over the counter FDA approved drug..I can get LDN online without an Rx from Mexico, but I chose not to..I could get an Rx for LDN if I was to jump through some hoops..but I chose not too, and not because I dont believe that it works, or that it is also harmless in long term low doses..because that is the truth of the matter..DM and LDN are harmless in low doses

DM can become psyhchologically addictive, and with my history, I of all people have to be careful..I have to admitt that when I taste it, it tastes like more..but I also understand that I have to treat DM with respect..because of my history..I dont fool myself about that one little bit about this, and am at the point in my recovery from addiction that I understand the difference between abuse and therapudic value..Ive come way too far to think I can fool myself about this..And what if I ended up with a back surgery, and was Rx narcodics?..What then?..I either have to man up and use them as medicine or be a fool and allow my life to spiral back down into the abyss..Theres a scenario for everyday of the week, and anyone of them could potentially became a reality..But there is one thing for sure..If I dont try a simple remedy such as DM, I will never know, and the reason why I chose DM is because it is cheap, harmless, and simple..That to me is the concept.."Harmless"

You asked if liver damage was a possible long term effect..I didnt answer because I havent found anything in my research that suggests it is..and the very first thing I looked at before I decided to take it were side effect/long term effects..and I couldnt find any..that is unless it is abused, but the same is true for ANY substance that is abused

Take Sinamet..Research the side effects..Dyskenisia is listed as a "RARE" side effect in the research on it that Ive done..and that is about as far from the truth as you can get..It is a "common" side effect..When people see MJF they think all that too and fro motion is from pd, and they are appaled when they find out that its from the meds..You cant move if you dont take it, and you cant stop moving after ya do take it..That cant be good for the body when its begins to have that effect

Jaye..I love you dearly and I understand that you have our best interests at heart..But I have to do what I have to do, and I cant see the harm or the logic in not giving something as simple as DM an honest try

[reverett123]

This is wonderful! I take back at least half of the things I thought about BT. I was heartsick thinking these were lost. Thank you Michael

Originally Posted by michael7733

Just a quick interruption here...which archives are you referring to? Are these the ones?

Brain Talk?

ok carry on...

michael b.

[michael7733]

Peggy Willocks showed me where they were.



Now, take a deep breath and let's stir the the pot 'til a cure comes to the top.

michael b.

[michael7733]

Jaye has always taken a very cautious approach to self medicating and alternative treatments that have not been tested for their safety. She has drawn the reins in on me several times, and sometimes the chastisement made me go, "Ouch." I wanted to run, while she was saying woah bill.I am glad that her strong, wise', cautionary attitude prevailed.

I recall one incident in particular when I was on one of my "white rat" sprees. I can't recall now what product it was that I was going on about, but someone else was going to try it out. Fortunately, he checked with his doctor before doing so. It seems that on top of Pd he also had an autoimmune disease, and this product was capable of strengthing his immune system. Such an event at that point in his life would have killed him.

So, thank you, Jaye, for the checks and balances you provide.


michael b.

[Jaye]

I never knew about that incident. It took a big guy to tell about it. I am humble in your company. Thank you for the link; even that much is a Godsend.

And Steve, you're mostly arguing with someone else. Please go back and read what i said.

If Michael's comments weren't enough, here is further reason to include a caution to check with one's doctor with any recommendation for substance use: http://www.streetdrugs.org/pdf/TNDR10DXMforHTML.pdf

About research: i am talking about the NIH and don't have time time to go into it right now. If you read this forum, you already know what I refer to.

Jaye

[reverett123]

1) The document cited was prepared by the Drug Abuse Warning Network, a controversial source in itself having been created in the Reagan era DEA to provide numbers that many would call distorted.

2) Even this source with their "sampling" techniques could only come up with 12,500 "incidents" and seemingly zero fatalities. In fact there is no mention of severity at all. Given the agenda involved that is itself cause for wonder.

As I said, each of us should do our own research. Blind faith in anyone, whether on this forum or in our hospitals or in our government, will be detrimental to one's health.