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italy52

Restore Gold

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Anyone using Restore Gold? or know anything about it. Videos claim it slows the progression of PD and helps with some symptoms.

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1 hour ago, pdmanaz said:

IMHO a total SCAM

I just love reading this forum where people are free to express their "expert" opinions on subjects for which the have zero knowledge. So let me enlighten pdmanaz while answering italy52's question.

Restore Gold is primarily TUDCA (Tauroursodeoxycholic acid) with some additional supplements. TUDCA is a readily available health food supplement. It is the Taurine derivative of UDCA (Ursodeoxycholic acid), a prescription medication sold as Ursodiol, Urso and Actigall.

Regarding Restore Gold (TUDCA), you can read Jon's most recent post in my Ursodiol thread:

As for UDCA, I have been using Ursodiol since October, 2013. Want to know more about it, you can read the thread or post a question there.

There are a large number of people using both products with a high percentage pf success. But just like PD meds, no one product works equally well (if at all) for everyone. We're all different.

Fred

Edited by MrFritz

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Well mrFritz it is my opinion and the product gives immediately hope with the idea of having an actual measurable effect on PD. The product is not medically proven nor offered by physicians as a resource for PD. My money is better used than on something I consider snake oil.

Keep my name off your obvious attempt to push your on agenda. You want it, you spend your money on it but don't belittle someone for their opinion - you are not a medical expert.

Edited by pdmanaz

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4 hours ago, pdmanaz said:

Well mrFritz it is my opinion and the product gives immediately hope with the idea of having an actual measurable effect on PD. The product is not medically proven nor offered by physicians as a resource for PD. My money is better used than on something I consider snake oil.

Keep my name off your stupid and obvious attempt to push your on agenda. You want it, you spend your money on it but don't belittle someone for their opinion - you are not a medical expert.

 

You are more than welcome to express your opinion here or elsewhere but in doing so, you open yourself up to rebuttal. So excuse me for expressing my opinion that you may be suffering from other issues which may have diminish your niceness gene. :rolleyes: You see, my only agenda is to help others in this forum as I have been doing for many years. As for Restore Gold, I have no interest in this company, nor do I recommend its products or those of anyone else. What I do recommend is Generic UDCA or TUDCA. This is based on my personal results (http://forum.parkinson.org/topic/15448-ursodiol-a-potential-new-drug-for-pd/) and published studies performed by real medical researchers.

The first study spearheaded by Dr. Oliver
Bandmann, MD PhD, Professor of Movement Disorders Neurology, University of Sheffield, UK (you can Google his bio) can be found here: http://brain.oxfordjournals.org/content/early/2013/09/02/brain.awt224.full.pdf Currently, there is a human clinical study underway of UDCA in Parkinson's patients which has an estimated completion date of May, 2018. https://clinicaltrials.gov/ct2/show/study/NCT02967250

The Last Word: Both UDCA and TUDCA are well studied and have been in use since the mid 1950's. They are FDA approved synthesized bile acids. Bear bile has been in use in Chinese medicine for thousands of years. Unless its use by you is contraindicated, by trying it you can only incur one of two possible results. Either it works for you or not. All you have to lose is the initial cost of a trial supply. If it works for you as it did for me, be prepared to be as amazed at its results as I was. Note: People with more advanced Parkinson's may not benefit from this regimen and, as I've said before, it does not benefit everyone with PD as we are all different.
 

Fred

Help Spread the Love

 

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Fritz - Why is a rebuttle of my opinion even necessary. Why not just post your opinion or tthoughts on the subject and let people make up their own minds. This is not a debate format or forum.

I apologize if I offended in any way.

Edited by pdmanaz
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Apology accepted.

Have a great day.

Fred

BTW - The name is Fred. MrFritz is just my handle.

 

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Thank you MrFritz for the info. It was very informative. I was diagnosed with Pd in 2008. Held off on medicine for 4 yrs. Now after being on Sinemet for 5yrs, I have dyskinesia. I am keeping the sinemet as low as I can so I can still move. I am sure this story isn't new to anyone with PD. I only take 25/100  carbo-dopa  1 1/2 pills 3x day. Wonder if It's not to late for me. Wouldn't hurt to try! Thanks again

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It is never too late to try. If your primary symptoms are tremors, there is a good chance that it may help you. If it does, DO NOT stop or reduce your dosage of Sinemet without consulting your doctor. [T]UDCA does not contain any dopamine which you still need. If you have any questions, please feel free to contact me anytime. Please let us know of your results. Thanks and good luck.

Fred

 

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On 7/26/2017 at 1:56 PM, italy52 said:

Anyone using Restore Gold? or know anything about it. Videos claim it slows the progression of PD and helps with some symptoms.

Hi italy52. As a disclaimer, I am part of WHP, but I was diagnosed with PD at 35 and I have been taking the ingredients in RG since Nov. 27 2014. I am still doing better than when I was first diagnosed and my PD has not progressed in nearly three years (praise God).

I would like to take an opportunity to offer a clarification. The video from WHP does not make any claims about Restore Gold. We have our customers speak about the product themselves, either in video or through 3rd party verified reviews. It is of no value for us to make claims, and according to the FDA we are not permitted to anyway. We do note the positive feedback we receive from others. The real value is to read and see others who take RG speak for themselves. So that has been our focus to help mitigate skepticism, though the criticism is fair and understandable. Outside of the drugs we all already know well, there is not supposed to be anything that can help PD in regards to symptoms and certainly nothing delaying or pausing progression. It is natural to doubt.

I have contacted a few persons that are longer term users of RG to see if they would be willing to create an account and offer their experience about Restore Gold. We know that there are many questions about RG and that it is helpful to talk to those who also take it. We do hope some will volunteer some time to afford some conversation about their experiences.

I can also answer questions if interested. I do note that I am part of the team that led to the development of RG, and I also take RG, so I am admitting bias. As another disclaimer, we also know that RG does not seem to offer any benefits to about 18% of persons, for reasons we do not understand. We suspect that some are diagnosed with PD and do not actually have PD, or their form of PD is not related to mitochondrial dysfunction. We also know that some decide to take RG anyway that are in stages IV or V, which we discourage, because positive results are more unlikely.

Ultimately, WHP was created in hopes that it would help persons like myself with PD. We are proud to note that we are receiving such feedback and only pray that more see an improvement of quality of life through WHP.

Thank you Fred for sharing your experience with UDCA (which is similar to our main ingredient TUDCA in RG). You have been taking that longer than I have been taking TUDCA, so I am always interested in how things are going for you as time goes on.

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My husband is one of those in the Videos on the Restore God website.  Everything he said is true.  I ordered a trial 3 month supply after reading the ads.  He didn't want to take it, because he had to take 16 pills a day, and he hates taking pills.  But after a month he decided to try it.  Three months later, his tremors had disappeared (they come back when he is very tired), his gait improved (didn't shuffle), his posture improved, his speech improved.  It's been nearly a year now, and things are still good.  For a progressive disease to regress is a miracle in my eyes.  I understand it doesn't work if you have had PD longer than 3 years.  My husband was diagnosed about 6 months before he started taking it.  To me, it is well worth the money.  I hope it works for you too.

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5 hours ago, wifey said:

 I understand it doesn't work if you have had PD longer than 3 years

I think I know as much about Restore Gold as anybody (I take UDCA) but I don't understand where that 3 year timespan came from. Unless you are in an advanced state, you have neurons that are impaired and nonfunctional but haven't died yet. It is those neurons that we believe are reactivated by the action of [T]UDCA.

Fred

 

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5 hours ago, MrFritz said:

I think I know as much about Restore Gold as anybody (I take UDCA) but I don't understand where that 3 year timespan came from. Unless you are in an advanced state, you have neurons that are impaired and nonfunctional but haven't died yet. It is those neurons that we believe are reactivated by the action of [T]UDCA.

Fred

 

On the WHP website we note that feedback on RG suggests that it is statistically less beneficial for those who are past stage 3 (not 3 years) of PD. That is likely what was meant. Like you stated, the more advanced the PD, the less neurons there are to restore, and less opportunity there is to enhance natural dopamine production. We are now seeing a delay of PD progression noted by longer term users of RG, including myself, which is also shared by you Fred in simply taking UDCA in isolation. We are excited by that data. However, those that are more progressed in PD may also be able to see a delay in PD progression, but we may never know. We often discourage trying RG if one is more advanced in PD, so those that do try it at such PD stages is a much smaller pool. Stages 1-3 seem to be about 82% positive feedback, but stage 4(ish) is only about 22%, and stage 5 is less than 5%. That is quite a drop after stage 3. Not everyone knows their PD stage, so we have to follow up with surveys to collect such info.

In addition, those who are more advanced often do not see as much or no symptom regression, so they discontinue taking RG anyway before knowing if it is delaying PD progression or not. Special thanks to "Wifey" who volunteered time to offer feedback for RG.

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Is there any scientific evidence of the positive benefits? Are doctors prescribing or recommending this course of treatment? Any medical trials? If I decide to purchase this what would I buy and how much do I take?

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I'm also one of the people in the videos on the website. I started taking RG (about 1.5 yrs after diagnosis) because I was taking all the supplements anyway in individual form. I was familiar with the research studies that support RG's formulation and decided to try it, with a healthy dose of skepticism about the profit-making wellness industry and concern that supplements are unregulated. It's been about a year, and I feel good and I have energy and I've been able to continue working in a challenging job and exercising quite a bit and traveling on active vacations with my family. My symptoms - although they get worse and better depending on stress levels, diet, fatigue, weather, etc. - overall have not worsened. I haven't increased my meds. Is that due to RG? I have no idea, but personally I do believe that RG's ingredients have been good for my particular case. I plan on continuing to take RG. Along the way, I've asked the company for data and more information, and they always respond immediately with good, measured responses that are really useful and not a sales pitch, which I appreciate. The company reached out to me to provide a review, and then to do a video, but they were never pushy and never once tried to script anything or have me say anything in particular. So far, I trust them, until proven otherwise. That's no different than the trust we put into any supplement manufacturer or pharma company or the regulatory process itself. 

Not everybody believes in supplements for PD, nor are supplements affordable for everybody. I think it's good to do your own research and make decisions based on what you believe in and what you're willing to experiment with. There's no miracle cure, as we all know.

I hope that's useful, I'm happy to answer any more Qs.

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2 hours ago, pdmanaz said:

Is there any scientific evidence of the positive benefits? Are doctors prescribing or recommending this course of treatment? Any medical trials? If I decide to purchase this what would I buy and how much do I take?

Hi pdmanaz,

Is there any scientific evidence of the positive benefits?

On a cellular level, several issues are correlated with Parkinson's disease:

  1. Mitochondrial dysfunction (linked to a ATP deficiency causing a cellular energy crisis, oxidation, and over production of alpha-synuclein)
  2. Alpha-synulein aggregation (alpha-synuclein is over produced and aggregates into toxic fibrils. This activates the brain's dedicated immune system causing inflammation)
  3. Neuro-inflamation (constant inflammatory response due to the alpha-synuclein aggregation causing additional stress to energy deprived dopamine producing cells)
  4. Neuro-oxidation (Inefficient and dysfunctional mitochondria leading to high oxidation causing additional stress to energy deprived dopamine producing cells)

These problems continue to mount and progress, creating cellular dormancy, and eventually permanent cellular death.

Instead of an attempt to target just one issue with one compound, each ingredient in Restore Gold was cherry picked due to supportive research demonstrating some success in addressing each of these issues. The medical journals cited for each ingredient can be found on the WHP website.

Are doctors prescribing or recommending this course of treatment?

We have had some doctors begin suggesting RG as something to consider because of success found in some of their patients. There is a massive gap between the medical research community and medical practice, often by a span of about 10 years. MD's also often shy away from natural compounds and prefer drugs. Educating MD's about the existing research that supports the ingredients in RG is a slow process. For example, just last year one of the ingredients in RG, NAC, was found to increase dopamine binding by 9% and decrease PD symptoms by 13%. If one was to ask mosts neurologists, they would not be aware of that clinical study. That is just one ingredient in RG, and it only addresses the neuro-inflammation and oxidation, which are simply byproducts of the larger issues of mitochondrial dysfunction and alpha-synuclein aggregation. It will take some time for the medical community to begin to move forward on alternative non-drug compounds.

Any medical trials?

No, not with RG itself. L-tyrosine and NAC, two of seven ingredients in RG, have entertained trials with statistically significant results. The other ingredients in RG have not moved to clinical trials but still have degrees of supportive research. It is very difficult for supplements to be entered into clinical trials. Since 2014, supplement formulas cannot be patented to protect clinical trial investments. Anyone can purchase the ingredients in RG separately if desired (which is what I used to do prior to RG). RG simply places these ingredients into a convenient formula, manufactured at a GMP facility, and offers it at 50% less cost than purchasing these ingredients individually at the same dosage. While all ingredients in RG are considered GRAS (Generally Accepted as Safe) by the FDA, WHP will unlikely pursue clinical trials as it would easily double or triple its product cost to cover the expense of clinical trials.  Once the product price increases because of clinical trials, it becomes more affordable to simply purchase the ingredients individually, negating the value add that RG offers in the form of a discounted formula to the Parkinson's community. The current strategy with RG is to promote awareness, leverage real world feedback from RG verified users, and highlight the existing and ongoing research of each ingredient.

If I decide to purchase this what would I buy and how much do I take?

First, make sure that you are not taking thyroid medication or MOAI class antidepressants. Second, assess your degree of PD progression. The more advanced the PD, the less likely RG will offer any notable benefits in the first 2-4 months. Third, connect with your medical professional to discuss the ingredients and its compatibility with your current treatments. The suggested dose of RG is 4 caps 4x per day. A lack of difficulty in swallowing is recommended given the number of daily capsules. A history of a weak stomach, digestive distress, or GERD can increase the chance of digestive distress with RG (about 5-7% of the population experiences temporary or ongoing forms of digestive distress). RG is available at the We Have Parkinson's website.

 

Edited by jds6958
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I agree with Fred's point of view on RG. I have been on it for over 2 years with what I consider positive results.

I was diagnosed in 2007 at the age of 50. I have been on Amantadine 100mg twice a  day for 8 years. I have been on Sinamet10/100 for 3 years.

I added TUDCA a few (2) years ago after reading about the work Dr Bandmann was doing in Sheffield UK. When I came across RG it was a convenient replacement for not much more than I was paying for the TUDCA alone.  RG also has other ingredients that are supposed to assist with PD symptoms.

I did try to do without last year when RG had a supply problem and I noticed an increase in the tremor in my right hand. The tremor subsided with the reintroduction of the RG.

I can't say what it will do for anyone else but I will continue to use and recommend others try as long as I get results.

I've been lucky so far I can still do most things while on meds even use chop sticks lol

 

 

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Here's MY worthless opinion....

Parkinson's is on the increase for whatever reasons. Some smart (marketing) people realize this fact, and figure they can financially capitalize on this. All they need is for a lot of people to buy their product for 2 years (which is about the same amount of time for symptoms to progress in a noticeable degree), before symptoms progress and they move in a different direction with their treatment. But 24 months at $100 per month, times lots of people, isn't too bad. Marketing on the internet is REALLY cheap, versus print ads or tv or schmoozing doctors, so the investment is fairly low.

Maybe this is just MY naturally suspicious nature at work, but I have my doubts.....

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3 hours ago, Beatit said:

 

I've been lucky so far I can still do most things while on meds even use chop sticks lol

 

 

That's funny....every time we go out for Thai, I always say, "see, I'm not TOO bad, I still can use chopsticks"!

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On 7/31/2017 at 3:37 PM, MusicMan said:

Here's MY worthless opinion....

Parkinson's is on the increase for whatever reasons. Some smart (marketing) people realize this fact, and figure they can financially capitalize on this. All they need is for a lot of people to buy their product for 2 years (which is about the same amount of time for symptoms to progress in a noticeable degree), before symptoms progress and they move in a different direction with their treatment. But 24 months at $100 per month, times lots of people, isn't too bad. Marketing on the internet is REALLY cheap, versus print ads or tv or schmoozing doctors, so the investment is fairly low.

Maybe this is just MY naturally suspicious nature at work, but I have my doubts.....

Fair criticism. However, no one is going to buy a product for 2 years if it does not clearly do something near term. Quite frankly, if RG does nothing for a person by the end of three months, it is likely not doing anything for them. Also, most companies do not offer their product at 50% off market prices out of the gate. Because of this WHP currently operates at a loss.

Economics aside, the real question is can RG help or not? I would personally pay $500 a month by just eating beans and rice to pause PD progression and reverse a few years of symptoms. Of course, I am 39 and have years to go with this and I am overwhelmed with joy that I am still doing better than when I was first diagnosed three years ago. Someone that is 90 years old could likely care less about PD progression and should just take Sinemet.

Not a "worthless" opinion. Nothing you said is out of the realm of possible, especially from your vantage point. :)  Life is about choices. WHP does its best to offer an informed choice, but RG is certainly not right for everyone.

Edited by jds6958

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I was diagnosed 4 years ago and can still use chopsticks without taking any PD meds, RG, or UDCA. 

PD usually progresses slowly.  So, when people really want to believe that something works to slow PD, they can convince themselves.  Just look at the forum, people have convinced themselves that stem cells, UDCA, TUDCA, various supplements and many other things have slowed or stopped their progression.  Worse yet, some people play into the desperation by making money selling snake oil to the sick.

 

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16 hours ago, jds6958 said:

Fair criticism. However, no one is going to buy a product for 2 years if it does not clearly do something near term.
 

Azilect comes to mind.....;)

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3 hours ago, MusicMan said:

Azilect comes to mind.....;)

Is that not usually covered by insurance? I couldn't afford that out of pocket when it was suggested to me. Most people are ok using insurance dollars verses their own.

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17 hours ago, jds6958 said:

Is that not usually covered by insurance? I couldn't afford that out of pocket when it was suggested to me. Most people are ok using insurance dollars verses their own.

Most insurance plans in the US have very high deductibles, so out of pocket costs are very high. I was paying about $500 a month for Azilect before I found the generic thru Canada for $100 per month. Medicare is different tho.

So, lots of people are paying lots of money for Azilect in the HOPE that it is beneficial. It's easier to substantiate spending the money when a doctor advises you to...

Edited by MusicMan

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