Research dated 2014 about C/L and rising PD death rate
Well this is disconcerting! Why is C/L on the shelf if this research is reliable we ought to be just using Levodopa
You need the carbidopa so you can get the levidopa down with out vomiting.
I don't suffer nausea when I ingest natural sources of levodopa. Synthetic C/L gave me mild nausea, which I addressed by eating ginger snaps. Hal, I don't know if I shared with you that I tapered off Sinemet during February and since March 1 have used only Mucuna Pruriens extract along with some natural sourced inhibitor (EGCG) to prevent the MP from converting inside my GI tract entirely. I am entirely satisfied to take no Rx. Yay! Thanks to Rich for the know how. No more dizziness and I can sleep all night; not a slave to a bottle of must have every 2-3 hours synthetic.
I also take mucuna 2 tabs a day along with C/L 4x daily 25/100, I would like to take more Mucuna and less C/L but not sure how to do it. Did you have help from your Doc. or did you do it yourself. Thanks
I had help for sure but not my neuro's help. I read herein the posts about using MP, especially those by Rich Silvestro. Then I embarked on a long tapering off Sinemet while experimenting with natural sources of MP and the inhibitors that Rich uses himself. I finally was comfortable with the natural products and just started taking less andless C/L and stopped all together.
BUZZ, tell me more about your MP use? I am trying that next... not on any c/l as of yet, just artane for tremor
Really? I am not the source for best usage information, you are. We all have need differences. Search Silvestro's posts and see how he uses MP Vit C fish oil, EGCG and alternately Quercetin/Bromelain. Recommend experimenting. I won't mention product names, I'm not marketing.
Well BUZZ, I don't know if you know but I tapered back on to Sinemet during March from Rytary. I am experiencing rougher off times but that is where those DREAM STEAM CARTRIDGES work so well. It has been a long strange trip but right now I am still trying to equilibrate. I am having better luck with the Sinemet CR but still not as good as the Rytary. For me the Rytary is better but not $ 800.00 a month better. I will go the $10.00 way a month for right now and lick my wounds.
BUZZ. One yr diag. Use Mucuna Pruiens 1/4 teaspn. x 3 daily with one teaspn Mannitol in am. With amino acid supps. MP from STARWEST BOTANICALS, Sacramento, CA. Where do you buy yours? Have never used meds. Running 50 m dash in Senior Olympics this Sat in CA. Age 76. Med field 3rd leading cause of death in America. Pharmacy top leading revenue field in America. Figure it out. We are mere LAB RATS.
Yay! You run for all of us old men. I can say without being accused of marketing, I ges that i order online from Swanson's.
My neurologist today told me that carb is necessary to prevent dopamine from formin n the blood stream. He prescribed three times a day 50/200. In four weeks I will take another walking test to (look for) measure any improvement in motor function. I expect if there is not sufficient improvement, doc will raise the levodopa dose. The chance of improvement of my tremor is slim and here he may add amantadine with hope it will affect the tremor.
I supplement with B6. Also if you can't function and are paralyzed most likely your life expectancy will drop even more for other reasons.
There is controversy concerning the harm caused by carbidopa. The claim of Hinz et al that Carbidopa lead to an increasing death rate has been largely ignored or disbelieved by most neurologists. In an earlier post, Hikoi has also questioned it. She pointed to statistics that do not show an increasing death rate outside the U.S. If true, this is a serious puzzle. It may conceivably be because there is a lesser use abroad of carbidopa. Someone needs to research this.
I dont think there is a lesser use of carbidopa outside of the US? We all use the same meds internationally though there is varying availability and choice.
That said i notice some people in the US have differing c/l ratio's and take less carbidopa than is generally taken elswhere.
I dont believe that Hinz can claim one thing (raised mortality) is caused by another (introduction of carbidopa). It may be another factor completely like different reporting criteria.
Thomas Muller has 106 sties in Pubmed, found via:
Muller T levodopa
His 2016 study, "Emerging approaches in Parkinson’s disease – adjunctive
role of safinamide" cites Hinz regarding carbidopa and death rates in
The first paragraph in that open-access article presents a very brief
historical sketch of levodopa, then adding carbidopa. Here's a quote:
"However, between 1976 and 2011, an increase of 328.7% in the general
death rate of PD patients was again noticed, when compared with the
first interval of levodopa therapy without DDIs use."
Dr. Muller seems to take seriously the adverse effects of the carbidopa/levodopa combination as reflected in PD mortality.
I agree he does appear to give them credibility.
He is the researcher for the drug co that is marketing this new drug and is writing for a US audience ( the drug is already approved in Europe)
He comments following the quote you give that "This phenomenon is not fully understood yet. Nevertheless, PD patients have a life span similar to that of the normal population. ...."
The new drug is an adjunct, add on, to standard c/l to avoid off times.
We were told that carbadopa was to help L dopa cross the blood brain barrier. and not be absorbed in the gut.
Its common to use in Spain also UK from what I see.
So the question is, is this research reliable? Can you find anyone else writing on this topic? One that isnt making money from selling an alternative to C/L.
I repeat my post from several months ago about this:
Other things about the article by Marty Hinz raise suspicion. This is as a result of my training for 30 years as a researcher.
The paper is "perspectives" not a rigorous research article and may not have been subject to peer review.
The journal is new and open access and therefore not highly ranked or rigorous as many journals.
The style of writing is unscientific and emotional in places - deliberately creating a storm.
As mentioned above it doesn't stress the main role of carbidopa (blood brain barrier), surely this is a serious omission that calls into question the value of the paper.
As mentioned elsewhere on this site, Hinz is selling his solution. I don't know much about this but if it was that good it would be in the top journals in the field.
Don't be alarmed is my advice.
Oh, that's what I was looking for. Opinon from a skilled researcher. Thanks Ozie. I was sad to read that Hinz is selling something.
Oh, do the lead researchers have commercial ties to alternate or natural product vendors? If you know it please share that. Neurologists have commercial ties to pharmaceutical vendors. Pharmacy reps deliver samples and literature, encourage doctors to ask patients to sign waivers to share information so their case data can be used for company purposes. Pharma reps even use ties to pharmacies to check if neuros are writing prescriptions. And pharmaceutical companies fund research all the time. I just wish somebody would tell me if the researcher's methodology is sound. I am not good with statistics and variables. Its all over my head. But the finding written in plain language within the summary is alarming and the work should be tested by another team to check its reliability, as Dumplekin wrote above. That it has been ignored is also disconcerting and raises a flag of warning in itself.
You ask - do the lead researchers have commercial ties to alternate or natural product vendors? - the lead researcher runs a company selling alternate treatment.
This is one persons research and the conclusions all supports his expensive therapy. Some on here are on the Hinz protocol and it works for some. You need a deep pocket to keep going.
C/L has been around about 50 years. I havent noticed or heard of people dying from the carbidopa. I know where Hinz got his stats but the rest of the world shows the opposite, people living longer not shorter with pd in recent years. I know many people who have lived 20 years and more with pd. i think the average life span pre c/l was about 8 years.
As they say, there are lies, damn lies and statistics.
Well I can't fault Mr. Hinz for trying to compete in the marketplace. It is our capitalist way of business that offers so many choices.
What knocks us PDs' off our perch?
I was told PD does not kill.
I'm now into year 13 and all those years on C/L and I'm not waiting to exit this earth yet. It gets me up on my feet, I drive to meet up with other PDs', am studying and doing papers, keep the house going, shop, see to my 89'year old mother ...make up her bed....washing , dishes..and I have a husband who just shakes his head encouraging me to rest more like he does.
All the above, while I am succeeding, it's not as it once was and the going is difficult but I know my own body and take precautions.
I don't want to read about our mortality just our journey. All the scientific stuff just floats over my head.
Cheers from wet Queensland Australia
I dont know how you read that into what i wrote Bridelena,!
C/L has been around about 50 years. "...people living longer not shorter with pd in recent years." My understanding also.
Myth 4. “No response to Sinemet 25/100 three times a day is considered a non-responder.”
a.Each person should be treated individually and each may require a different dosage of Sinemet to get a response.
b.Some physicians fail to push the dose after it reaches 300 or 600 mg/day.
c.My “limit” is 2,000 mg/day.
To put it simply in research terms, the work is a scam. Researchers of quality are unlikely to drawn into debating a "perspectives" piece in an unranked journal. The reason no doubt he bothered to publish it there is he can say it was published in a journal and hope that it gives credibility to his solution.
The two variables, use of carbidopa and death rate are not causal. I have nothing to gain from criticising their work but it is a poor standard (rubbish). He doesn't even state the main reason for carbidopa - so l/dopa passes blood brain barrier, even I know that and I am not a researcher in parkinsons.
I know it may not be causal. Right away I thought of other variables that may account for a rising death rate and wondered if Hinz factored variables into his graph. I wish soeone would criticize his numbers just to set our minds at ease.
I'm shocked and saddened to hear that people are doing something like trying to sell stuff for their own enrichment. What is the world coming to.
It's the same old world.....there's always a snake oil salesman earning dollars off sick people who will do anything to get well.
Ditto here. No one definitively knows why certain people get Parkinson's therefore there is no cure yet. At least we have some attention for the problem and there lies our hope.
This is why I use amino acids. We are told PD is progressive and degenerative, and appears to be in most cases. Carbidopa is used to help the LDopa cross the blood - brain barrier, and to help nausea. Nausea is one of the side effects of Carbidopa.
5HTP is an amino acid which does exactly the same thing, albeit you need more LDopa. It is readily available via Amazon etc. So if folks have a problem with Dr. Hinz, he can be bypassed completely. He has dedicated most of his life to PD, so personally, I greatly respect him.
None of my health providers had heard of 5HTP , but admit that I am a lot healthier than I should be. There is something weird going on, and we are carrying the can.
WHAT ECAXTLY DO YOU TAKE?
EXACTLY - SORRY
4.2G 98% Mucuna
2 Tabs Neuroreplete (5HTP plus others)
2 Tabs CysReplete (Cystine plus others)
The precise formulae for these last two are available on line.
These are daily amounts. They need to be personalised. Cost is about £20/week. It's a no-brainer.
Harlybob. With your Mucuna P how soon do you have a meal? Before or after.
HarlEy. Who do you buy your Mucuna Priens from?
Normally I have it after a meal, but it really doesn't matter.
It's strange, no-one seems to stock 98% Mucuna for any length of time. So I google it each time. I also keep a good stock as it worries me that it might become unavailable.
Thank you. Where did you go to find this all out and do you think you will ever go back to c/l
I came across this guy. I wasn't entirely convinced, but decided to check it out.
Decided to keep as far from regular drugs as possible and use my period of grace to learn about aminos.
It took over 100 years for vitamin C to be accepted for scurvy. There is a similar battle going on with B17 and cancer. We don't have a hundred years; go with what works.
MP, EGCG, vit C or an orange, fish oil in the mornings and some strong black tea with my ginger snaps. After an hour I feel loosened up and I shower then eat something else for breakfast or sometimes drink a vegetable puree'. When that wears off I take more MP but rather than EGCG I take some quercetin/bromelain with it. Silvestro cited research and warned against taking EGCG frequently.
Just a slight correction Harley. L Dopa leads to nausea, you can take extra Carbi Dopa to help with Nausea.
The proposal is that Carbidopa permanently destroys the body's vitamin B6 system, which impacts 300 or so body systems. This would explain the many and varied symptoms associated with PD.
LDopa does cause nausea, which can indeed be addressed by Carbidopa, but at what cost?
5HTP is a risk free alternative. I have zero nausea from my LDopa.
I read the report and kind of panicked but then read the replys and now all is well.
What a ride we are all on.
Thanks to the knowledgeable people on this forum for taking the time to make this work.
Levadopa always crosses the blood brain barrier. It is the job of carbidopa to prevent peripheral conversion of levadopa to dopamine. Carbidopa does not cross blood brain barrier.
Buzz1397 what is your Mucuna source and dose?
Hinz may be successful but is many times more expensive than c/l.
C/L is free on the NHS. I pay about £20 per week on the Hinz protocol. Admittedly I had to pay a doctor to get me balanced, but folks have to make a living and cannot compete with "Free".
I buy from Swanson's. Dose depends on what's in our stomach, your needs....My dose is usually just two 800 mg capsules of 15% L Dopa
How many times per day and what time of day with dosage?
I don't do schedules, not really. Some days 3 times a day, some 4.
some times a dose lasts 3 hours sometimes 6 hours
Isn't that 800mg in two caps?
no, each cap is 800 mg
doctors are against alternativesis that they were not tested in a double blind research.which is allways done by the company of the product and there is always kined of an influance .so every article is not 100 persent the whole truth
Dr. Thomas Muller has 106 sties in Pubmed, found via:
Muller T levodopa
His 2016 study, "Emerging approaches in Parkinson’s disease –
adjunctive role of safinamide" cites Hinz regarding carbidopa and
death rates in PD.
Dr. Muller seems to take seriously the
adverse effects of the carbidopa/levodopa combination as
reflected in PD mortality and described by Marty Hinz.
The safinamide was just granted FDA approval
no kidding, this is BS. No neurologist should be prescribing this crap. Glad I figured this out within 8 weeks of starting on it before it hurt me.
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