Parkinson’s website could put lives at risk, says clinical director of Parkinson’s UK

Perspectives

Author: Geoffrey ChangPublished: 19 May 2016

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Leading Parkinson’s specialist warns that medical claims made by a popular Parkinson’s website are “absolutely unsubstantiated”


Specialist doctors are worried about misleading advice being given on a popular website, promoting alternative therapies for people with Parkinson’s disease.

The website – Fight Parkinson’s (fight-parkinsons.org) – claims that health food supplements could reverse the symptoms of the condition and encourages people to ditch traditional prescribed drugs like levodopa in favour of alternative treatments.

Colin Potter, the Parkinson’s patient from Portsmouth, UK, who runs the website (its Facebook page has over 12,000 followers), goes as far to say that it is possible to live medication-free with the right diet and exercise regimes, based on his own personal experience of controlling his symptoms without drugs.

Putting lives at risk

In a radio interview Professor David Burn, clinical director of charity Parkinson’s UK, called these claims “absolutely unsubstantiated and outrageous” and is concerned that such information on the Fight Parkinson’s website may be putting lives at risk.

Dr Burn said: “I’m very worried about the website because it is making absolutely unsubstantiated and outrageous claims to a potentially vulnerable group of patients.

“What really upsets is that the website implies doctors are almost being dishonest by wilfully not giving full disclosure about medications.”

“Spectacular results”

In one video published by Potter, he talks of the “spectacular results” and “near complete reversal” of symptoms in a case study promoting the use of amino acid therapy – protein supplements that aren’t available in the UK. However, they are available in the US, though they are not approved by the FDA as a treatment for Parkinson’s, and are classified as a dietary ingredient rather than a medicinal drug.

The treatment plan costs £250 per month and requires the patient to stop their prescribed pills as soon as they start administering the amino acids, which is worrying doctors who say suddenly discontinuing their medication could even kill some patients.

“Parkinson’s isn’t necessarily the incurable, degenerative disease we are told. It’s just doctors who don’t have any answers,” Potter adds.

Fight Parkinson's lead

“Absolutely no evidence”

While Potter insists that his website is purely for sharing information, Dr Burn expressed strong concern at the some of the suggestions he makes.

“I think there is absolutely no evidence, for example, that the treatment is curative, which is what is being suggested,” said Dr Burn. “There is no evidence that amino acid therapy will slow down or cure Parkinson’s.”

Parkinson’s Life contacted Potter after the radio interview and he said he’s never advised anyone to stop their medication without consulting their doctor. He also argued that the existing medical regimes are limited, and that the alternative methods his website promotes are offering hope to others in difficult situations.

“Drug-induced symptoms”

“The consequences of medication are absolutely dire. I call them ‘drug–induced symptoms’, which have devastating consequences,” Potter told Parkinson’s Life over the phone. “My question to Dr Burn and Parkinson’s UK is: ‘why aren’t you looking at alternatives to the pharmaceutical route?’

“Fifty to 60 years ago, levodopa was considered the drug of last resort. Today it is the drug of first resort. Nothing has changed for half a century, and most people feel shocked by the standard of care.”

“The amino acid therapy actually involves administering levodopa along with amino acids, which allows more levodopa to get to the brain,” he explained.

“There are too many people saying it works. I don’t know why they [Parkinson’s UK] are so dismissive. And if you have Parkinson’s, you’re inclined to try it, as we’ve got nothing to lose. And we need something now and not in 10 to 15 years time.

“I’ve just come across too many people in disastrous circumstances who are told they have no hope. But I’ve found loads of evidence to show you can live well with this condition.”

Potter rejected the suggestion he publishes misleading information on his site, and denied ever selling the amino acids.


Have you come across the Fight Parkinson’s website before? If so, what are you thoughts on the information it shares? Let us know in the comments below

 

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Comments


  • Eddie Besketti

    well this is unsettling. If one man says amino acids has amazing effects on his Parkinson’s, are there clinical trials that show this can help? and if there are not any clinical trials – why not?

    • Colin Potter

      Eddie

      Of course, it’s unsettling. In fact, it’s downright disappointing.

      Here are patients, being treated by doctors with the natural, herbal form of levodopa and becoming well, leading a far better quality of life and without drug-induced symptoms. Furthermore, this is a long term treatment without the diminishing results associated with the synthetic form of levodopa used in drugs.

      Why aren’t there clinical trials? For that, you have to understand the current system. Clinical trials are run and funded by pharmaceutical companies. Such trials are hugely expensive and conducted for drugs where there is a prospect of a patent and substantial profits.

      Levodopa from a herb and amino acids are already available and can’t be patented. No patent = no super profits = no clinical trial. So your typical doctor won’t hear about it and, if he does will be able to say, ’there’s no evidence’.

      This applies to dietary impact on Parkinson’s, vitamins and mineral supplements, and other therapies.

      Thus, it falls upon the individual, should he/she be dissatisfied with his treatment, to seek out doctors who apply an holistic approach and who will prescribe treatments such as Amino Acid Therapy. They do this because they have seen at first hand the results it has delivered.

      Colin Potter

  • http://bluedogscientific.com/ Dr Gary Sharpe

    The narrative that Dr Burn presents is demonstrably a false one. I am not endorsing Mr Potter here, but I would challenge the view that it is not possible to live well with Parkinson’s without starting on the drugs. The evidence for this is actually overwhelming. In this article I have collected together a number of resources and case studies which demonstrate unequivocally that inevitable decline is simply not true and that there is always the possibility of hope. These then are the stories of our fellow travelers who’ve already escaped from both Parkinsonism and the falsehoods of the medical diagnosis narratives, or are helping others to do so. I will add in the physically manifest results of TMJ (jaw alignment correction – check out on youtube) as a separate in-depth article.

    outthinkingparkinsons.com/resources/library

  • Colin Potter

    I’d like to add to the above that, at http://www.fight-parkinsons.org, I set out only to share my story that through adopting an anti-Parkinson’s diet, eliminating toxins, and structured exercise, I have been able to halt the progression of my Parkinson’s and reverse many of its symptoms, leading me to lead a good quality of life.

    Everything I do is based upon published research studies.

    This research then led me to other therapies, information upon which we now share on the website. These therapies are administered by doctors.

    At no stage do we suggest that anyone should cease or amend their medication. We state clearly that any change in diet, medication etc should only be done in consultation with a doctor.

    Parkinson’s UK are quite mistaken in their assertions.

  • el marco

    getting to the root cause sure would solve this problem.. marcosbresearch.yolasite.com

  • David Spry

    I totally believe that I have halted progression of my disease with a nutrition and supplement regime.
    I had my DNA tested, and detail Private bloodwork, which together pointed me in the right direction.
    I am a totally different person to the one before this new regime, I can’t undo damage that is already done, and I have not been able to reduce my PD meds, but my quality of life is unrecognisably improved.
    Look on YouTube MTHFR Parkinson’s

    When doctors use the phrase ‘no evidence’ what they actually mean is that there has been no fully randomised double-blind clinical trial costing maybe £10 million Well who exactly is going to pay this kind of money on a trial testing diet and supplements? Where is the money? No drug company is going to go there!

    There is actually a lot of academically credible research connecting diet nutrition supplements and the gut to PD. Even once you’ve got all that right, genetically you have to have the enzymes to use the nutrients, to power your mitochondria for a healthy happy life.

    Through NutriGenomics I believe I am cracking my disease. This is all done under my own steam, as the NHS is simply not set up to help me in this area.

  • Sandra Tonkinson

    Great to know this therapy has immediate affects, but how does it compare long-term versus the medical approach?

  • AlPhur

    Absolutely no evidence? A quick websearch, finds this from 2011,
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3068871/

    This covered adjunct amino therapy with L-dopa, in a complex hypothesis – it could
    be that just the aminos were helping. 5-HTP is used, presumably because
    it is a serotonin precursor, and L-trytophan was banned (long story
    involving incorrect chemical sythesis by a pharma set-up, and the FDA).

    These medical support websites like Parkinson’s UK are bought-and-paid-for by the pharmaceutical industry, they’re ‘front organisations’. news.bbc.co.uk/1/hi/health/6642749.stm They are headed up by ‘experts’ immersed in Pharma. And Pharma is so kind and charitable in supporting them (I bet they even get tax relief!), directly and indirectly.

    That’s why there’s no genuine intent to study or publicise alternatives that work. No profit in it. Loss of revenue if people become aware.

    What do you call alternative medicine that’s proven to work?
    – Banned medicine!

  • Peter Law

    Hi. I have been on an Amino Regime for just over a year. I was diagnosed with PD about 2yrs ago. My neurologist is amazed, and announced herself ‘redundant’ at my last visit.
    I still have mild symptoms , but have improved immensely over the past year. In my experience the best advice comes from people who actually have PD, especially those with a PHD in a related field. The prospect of a slow lingering death is a great motivator. Life is a gamble, but with Amino’s the form is much better than the Pharma route.

    I believe the same problem exists with cancer, but that’s another can of worms. :-)

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