Parkinson's Disease Tulip


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Old 05-03-2015, 05:46 PM #1
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Yes - I totally agree with all of you. They could be total crackpots. I'm not defending them, I'm skeptical too, but I'm willing to take a risk and give it a try.

As for the reason they mix it with protein - it's to make it more of a shake/meal, they also have a pill form without the protein, it's the patients preference.

They told me they will soon put together a clinical trial with about 30 people.
And they did offer to give me a 60 day supply. They did not ask me for any payment.

Years ago I had H. pylori (yes, I'm aware of the link with PD), I was very sick and had massive stomach pains - I went through all the antibiotics and was rid of the H. pylori but still had the stomach pain, horrible digestion, constipation, diarrhea, eating was painful - all of it. Someone suggested I take some products from a multilevel marketing company. Of course I was leery, skeptical and thought the whole thing was a scam, but I was desperate to feel better. You know what - they worked. I took them for about a year and to this day my digestion is better than it ever way before.
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Old 05-04-2015, 08:27 AM #2
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Quote:
Originally Posted by Tupelo3 View Post
Couldn't agree more. I love these products that have basically "cured" PD (80% improvement) in ONE person. What would be the big deal to follow 10 or 20. This isn't is a costly clinical trial. Just an anecdotal account. Why not give it away for free now and get dozens of anecdotal reports. If we all fell 80% better, they'll make their millions and then some....
TUPELO3,
imho if they really had something, they would have investors lining up to fund their research/product, especially in this day and age of the internet and crowd sourcing. any "study" of a supplement just reporting anecdotes ain't worth a hoot, how does one even know the people in the study have pd or even took the supplement? it's hard enough in a regular study to have compliance. i did a recent pd study testing forced exercise on a tandem, they required a note from my neurologist, was run by a physical therapist, think they had less than $30,000 in funding because PT's salary was already paid for by the university.


the fact that they added protein and mucana sets off alarms to me.
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Old 05-04-2015, 10:12 AM #3
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It's is nice to know that you all are willing to try this out for us and report back.

Thank you...
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Old 05-06-2015, 04:50 PM #4
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The CEO of Xicepta, Dr. Soledad Manaay, answered as follows when I asked if it was ok to recruit more people for the study:

*edit*
As part of the study you get 60 days of Agitan X for free.

If you are interested contact her at *edit*
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Old 05-06-2015, 10:04 PM #5
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I applaud those willing to give it a shot. We will all appreciate your feedback and updates. Please keep in mind when you self analyze, mucuna along with some placebo effect can go a long way to making you feel a little better.

With regard to their starting "clinical" trials soon, I highly doubt it. They may conduct their own anecdotal study, but there is no evidence at all that they are going for FDA approval to begin a phase 1, 2 or 3 trial. I've searched everywhere and called all of my contacts. No one knows them. For those in contact with the company, why not ask them for some of the details like where the trials will be conducted; what is the study design, how long is it, who is the independent monitor, when are they meeting with the FDA for design approval, when will we see it on clinicalgov.com?

I hate to be negative because I generally have hope and positive feelings. However, past experiences with these type of untested "hype" drugs/companies leaves one highly sceptical......
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Old 05-06-2015, 11:03 PM #6
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Quote:
Originally Posted by GerryW View Post
The CEO of Xicepta, Dr. Soledad Manaay
Dr Manaay appears to be involved in entities other than Xicepta.

For example, she is the CEO of a company called Biologic Cosmetics, Inc. (http://issuu.com/solmanaay).

This company (http://biologiclife.com/) provides (for a fee) "Caviar and Stem Cell-Based Revolutionary Skin Care" (http://biologiclife.com/about/).

Other members of the NeuroTalk community may wish to draw their own conclusions from this.
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Old 05-07-2015, 08:23 AM #7
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AGAIN, one has no "proof" of what's in this supplement. if this company's goal was to get the attention of a lot of pd'ers they might have accomplished it.

a poorly designed clinical trial isn't worth doing and like TUPELO3 stated, the placebo affect is incredibly strong in pd'ers willing to risk their health to try something new, look at all the gene therapy trials that had great results in phase 1 where everyone knew they were getting the treatment and had no statistically significant benefit in phase 2 when the placebo affect was accounted for.

the only proven treatment that reversed pd symptoms has been fetal cell transplants. and gene therapy has required surgery cuz the genetic material has to be delivered to the right part of the brain, not the whole brain. and may not pass the blood brain barrier.

if dopamine producing brain cells could be stimulated to change just by eating and drinking something think about the chaos in your brain. you'd eat a steak and your head would burst! just being slightly silly. but that's why we have a BBB, to protect the brain and limit passage of most molecules and highly regulated systems for controlling the production/destruction of neurotransmitters.
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Old 05-07-2015, 09:00 AM #8
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Quote:
Originally Posted by soccertese View Post
AGAIN, one has no "proof" of what's in this supplement. if this company's goal was to get the attention of a lot of pd'ers they might have accomplished it.

a poorly designed clinical trial isn't worth doing and like TUPELO3 stated, the placebo affect is incredibly strong in pd'ers willing to risk their health to try something new, look at all the gene therapy trials that had great results in phase 1 where everyone knew they were getting the treatment and had no statistically significant benefit in phase 2 when the placebo affect was accounted for.

the only proven treatment that reversed pd symptoms has been fetal cell transplants. and gene therapy has required surgery cuz the genetic material has to be delivered to the right part of the brain, not the whole brain. and may not pass the blood brain barrier.

if dopamine producing brain cells could be stimulated to change just by eating and drinking something think about the chaos in your brain. you'd eat a steak and your head would burst! just being slightly silly. but that's why we have a BBB, to protect the brain and limit passage of most molecules and highly regulated systems for controlling the production/destruction of neurotransmitters.
wait.....Information molecules from food called micro RNA instructs our genes says Dr. Bruce Lipton and new discovery regarding the science of epigenetics (who also validates placebo response) ? https://www.youtube.com/watch?v=TtwTEHW8_8k
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Old 05-07-2015, 09:23 AM #9
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wait.....Information molecules from food called micro RNA instructs our genes says Dr. Bruce Lipton and new discovery regarding the science of epigenetics (who also validates placebo response) ? https://www.youtube.com/watch?v=TtwTEHW8_8k
i'm not commenting on whether an ingredient may or may not be effective, i'm saying there is no way to know what they are actually putting in this capsule.
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Old 05-13-2015, 08:34 AM #10
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[QUOTE=GerryW;1140579]The CEO of Xicepta, Dr. Soledad Manaay, answered as follows when I asked if it was ok to recruit more people for the study.)

What actually is the study Gerry?

From curiosity and Like others I have looked for further info:
I see Dr Gheorghe Mihaescu, also developed a product used for body building called Humanofort, I found posts from 2001 about it and another product used for pet care.
This is a description of the pet care product:
The natural growth factors in DOGtor Rx’s Formula are comprised of clusters of low molecular weight oligopeptides, which are quickly and easily assimilated and transported through the bloodstream to their specific receptor sites. Each of these growth factors has unique, bio-stimulating properties…
The active ingredient in DogtorRx is fertilized chicken egg extract, which contain heterologous oligopeptides that are able to cross the gastrointestinal mucosa. These peptides have a demonstrated adaptogenic effect and act at TWO levels:
Normalize the adrenal cortex activity (androgens, glucocorticoids, mineral-corticoids).
Cellular/tissue level (exert cyto-stimulating, cyto-protective and anti-oxidative properties).



The director of the company Dr Soledad M. Manaay, is not medical but holds a PhD in International Psychology with focus in Industrial and Organizational Psychology. Dr. Manaay has extensive background in business development, management, public relations, and in strategic sales and marketing. She arrived in the US via the diplomatic service serving as a media attache. After she resigned from the foreign service she went on to become a successful entrepreneur having owned and managed a high-end boutique in Hawaii and co-publisher of a community newspaper that is now the longest-running paper of its kind in Hawaii. She also served as a real estate principal broker from 2001 to 2009 while working as PR Consultant.
See more at
https://www.crunchbase.com/person/soledad-manaay
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Last edited by dilmar; 05-13-2015 at 08:52 AM.
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