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johnnys

dyskinesia free l-dopa

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Hi

I found this link the other day.It seems the author is stating dyskensia came about when carbidopa came into existance.before L-dopa could be taken along with 5-HTP a avalable supplement to control parkinson disease.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4238750/

I find this very interesting why the combination was accepted even though it caused dyskensia which can be worse than having PD.

 

thanks

john

Edited by johnnys
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Haven't read the linked paper, but my understanding was that carbidopa was added so as to dramatically reduce the dose of levodopa required to be effective and that was at least in part to reduce the problems with dyskinesias.  

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I read the paper, and it sounds a bit overwhelming to me.  I looked up Dr. Marty Hinz on Google, and found some interesting things about him.  One of the things was a reference to this forum, and Dr. Okun's comments:  http://forum.parkinson.org/index.php?/topic/17640-carbidopa-increases-death-rate/

It looks as if this is a recurrent theme! 

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Hinz Protocol has been debated for sometime.

 

There is a guy on YouTube who claims as long as you take his $1000/month supplements you will get better. In small words are to be effective you must

exercise, diet (eat sensible), and (try to) get a good nights sleep. Irony is exercise, diet, and sleep are always a good thing.

 

Any of use with Parkinson's and stomach/colon issues are all to aware of medical absorption, diet, and wellness issues. So makes sense to use caution,

but saying death has increased by 300% is odd sinc 1976 as Parkinson's wasn't well understood for so many years. Forty years ago you didn't see Parkinson's

listed as a cause of death, but pneumonia.   Yet, aspiration pneumonia is the leading cause of death for PwP (Person with Parkinsons), so a coroner may list Parkinson's as an underlying cause, but not the main cause of death. Hence the odd statistics.

 

For those in Minnesota, who have very large trust funds, it would be great to hear their experience with the protocol.   Meanwhile for the rest of us, good exercise

and good eating will make a huge difference.  I just don't see having to spend $1000/month for the supplements. 

Edited by TexasTom

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I am on the HInz protocol since May and I am doing better than on Sinemet/Selegiline.

The reason I started was dyskinesia.  Once I stopped the Carbidopa the dyskinesia went with it.

Supplements are not cheap but no where near $1000/month.

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hercules... thank you. I knew there are some folks on it.  From what I gather it was $300 to $1000 a month for supplements for Heinz Protocol.

 

I was rambling and remember the "all natural supplement guy" who's supplements was about $1000 a month.

 

I think the oddest part about my DBS surgery was that my "goto" medication made me sick! Neusea is something that never occurred with Sinmet,

but suddenly it was so intense the morning after surgery. 

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Maybe

 

hercules... thank you. I knew there are some folks on it.  From what I gather it was $300 to $1000 a month for supplements for Heinz Protocol.

 

I was rambling and remember the "all natural supplement guy" who's supplements was about $1000 a month.

 

I think the oddest part about my DBS surgery was that my "goto" medication made me sick! Neusea is something that never occurred with Sinmet,

but suddenly it was so intense the morning after surgery. 

 

Nauseous feeling may come from the location of  your lead.  I remember when the surgeon was testing the leads location, there was one position where I felt immediately nauseous, then on another occasion my speech was impaired and on yet another it was my vision. They tested different locations until they found the optimal one. 

A change of stimulation parameters will probably solve this nausea problem.

Regards,

 

Mireille

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Ive had some benefits by cutting back my sinemet to one 25/100 and adding comtan.Another risk for me was dehydration .I drink 4 to 6 cups of coffee and found if I drink less and addd water my movements are much calmer.

I also read recently how many who start a drug have sideffects and quit to soon.It can take a few months to get use to even a small change.

My father always said the secret of living with PD is to keep moving ,engaged in life and he never talked much about PD yet he was the president of our region parkinson organization long before NPF.

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Johnny's -- Your father sounds like a very wise man.

 

Keep up the water! In Texas it is way too easy to get dehydrated. So I do the "pinch test" on the skin on the back of my hand. Make a "tent" by pinching loose skin, release and the skin should immediately go back down. If the "tent" remains, you need to drink more water.  With Comtan and dark urine I can no longer tell from just the color of my urine if I am drinking enough water.

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I also read recently how many who start a drug have sideffects and quit to soon.It can take a few months to get use to even a small change.

I never understood how this works. If a drug is suppose to help you then shouldn't it work within a day or 2 or else not at all?  Every new drug that my mom has tried has not benefited her. In every case she gets worse.  How can I keep giving it to her if she looks so out of it and  weak where I can't even move her?  My mom seems to be the only PWP on the planet who gets super sleepy from just a quarter Sinemet as a booster dose and I tried that on her for 2 weeks before I gave up.  At what point are you suppose to keep going until you think it's really not going to work?  It's one thing if it doesn't seem to make a difference but when you go downhill then I don't agree with this.

Edited by miracleseeker

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It seemed when I took comtan at first I had side effects which after a month or two went away or are minimal now.Of course if your getting worse it would leave no doubt to stop Ropinerol really did nothing for my PD but it sure did make me anxious,But then others do well so again its personal.

Hope your mother is doing better

john

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Sounds like my recent brain stimulator adjustment:  A modest increase in amps/volts or pulse shows no effect for a few days before kicking in and delivering some (modest) improvement.

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I am on the HInz protocol since May and I am doing better than on Sinemet/Selegiline.

The reason I started was dyskinesia.  Once I stopped the Carbidopa the dyskinesia went with it.

Supplements are not cheap but no where near $1000/month.

 

I was recently diagnosed with PD at the age of 48, and am very interested in starting the Dr Marty Hinz Protocol. Can you recommend a reliable clinic that offers this protocol?I have been researching the various clinics, and most of them smack of commercialism. I also wondered if it was known whether or not there were any long term side effects from following this protocol? 

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Ncrocker, can you provide some information about your Levodopa usage? How long have you been diagnosed, how long have you been taking Levadopa, and what daily dosage were you taking when the dyskinesia started?

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Twenty-five years 'down the road' and post DBS surgery I get dyskinesia when I over do the L-dopa.  Don't worry about cutting pills in half and taking these smaller dosages at closer intervals.  Food and drink can also impact how much of the active ingredient is taken up by the body.  Patience, my friend and experimentation.  There is an argument that dyskinesia is a positive sign that your body is responsive to  L-dopa...a good thing.

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Twenty-five years 'down the road' and post DBS surgery I get dyskinesia when I over do the L-dopa.  Don't worry about cutting pills in half and taking these smaller dosages at closer intervals.  Food and drink can also impact how much of the active ingredient is taken up by the body.  Patience, my friend and experimentation.  There is an argument that dyskinesia is a positive sign that your body is responsive to  L-dopa...a good thing.

What you are saying is that at least know that Dyskinesia means your body is accepting the L-dopa so now the trick is to adjust it to make it work for you?

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What you are saying is that at least know that Dyskinesia means your body is accepting the L-dopa so now the trick is to adjust it to make it work for you?

 

Yes.

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Twenty-five years 'down the road' and post DBS surgery I get dyskinesia when I over do the L-dopa.  Don't worry about cutting pills in half and taking these smaller dosages at closer intervals.  Food and drink can also impact how much of the active ingredient is taken up by the body.  Patience, my friend and experimentation.  There is an argument that dyskinesia is a positive sign that your body is responsive to  L-dopa...a good thing.

 

It is also my understanding that if you develop dyskinesia its another confirmation that you do have Parkinson's.  A normal person's brain would just throw out the extra dopamanine like it normally does.

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Thanks for this Johnnys

 

I have been reading about this for a while now, as I have started having dyskinesia, now going on 22 years of Carb/levo. Along with the depletion of glutathione, 5HTP, B6, therefore significant muscle loss due to these side effects. Finding western med docs that believe in this or care has been a challenge. 

Now I see md 's that are naturalopaths. They get this stuff. 

 

The challenge for me is, I'm very sensitive with medications supplements. So taking 5HTP, b6, competes with med dosing. Which is every 2-2.5 hours. I have the best results taking it frequently. 

 

I'm hoping to start IV of glutathione, it means I have to travel 1.5 for this, but I need to try it.

 

Thanks 

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FDA acts against Duluth firm selling dietary supplements

...

However, the board has taken several disciplinary actions against [Hinz], starting in 1996 when it suspended his license after he was hospitalized in Duluth for bipolar disorder with sleep deprivation. Later actions show continued concern over his ability to practice. It suspended his license again in 2001 after a skills audit "identified concerns with [his] medical knowledge, prescribing practices, competency, and recordkeeping," but stayed the suspension contingent on his full compliance with the terms, provisions and deadlines set by the board. The license was reinstated in 2005.

 

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My problem, Dr Hinz, is that you are spamming the message boards. That’s not cool and it’s what scam artists and quacks typically do. Saying that Other companies also have FDA complaints  so why bring up your past is not a defense. Instead it just looks like a bad actor trying to get new clients for what could easily be just another shady business practice  

But if that’s not the case, if you’re now legit, then Why dont You just advertise or better yet, why don’t people who think your services are legit speak up and tell us how great they’re doing. 

Look, Folks are free to seek treatment in any way they like, and no one is saying that alternative meds and therapies are not beneficial. Just consider the source is all I’m saying. 

-S

 

 

Edited by Superdecooper
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