WHO WILL DARE TO CUT THE GORDIAN KNOT OF PARKINSON'S AT LAST?

[parkinsonshereandnow]

"You can't untie a knot

without knowing how it is tied."

Aristotle

"It is the same to cut it as to untie it."

Alexander the Great, Aristotle's pupil

(according to the account of Curtius Rufus)

(In addition to greeting the HealthUnlocked community and thanking you for everything I am learning here, I would like to tell you that the book I am writing now is going at a good pace.

The passage through this community has been very, very fruitful.)

We could say that Parkinson's is a mystery hidden behind a riddle, itself hidden behind an enigma. A puzzle, a labyrinth... until we manage to see it as it is. Then we perceive light, colours, fresh air where before everything was gloom, a grey atmosphere with the smell of old hospital disinfectant.

As researchers, or rather amateur scientific detectives, we have observed that what prevents Parkinson's is the same thing whose absence is reflected in autopsies. And in turn, the very thing that slows down the disease and determines the severity of the symptoms.

I would like to recommend here two excellent articles by the American neurologist David Perlmutter from 2013 and 2015:

2013

What I Wish Everyone Knew About Parkinson's Disease.

mindbodygreen.com/0-10979/w...

2015

Parkinson's Disease-Treat the Fire, Not the Smoke.

alive.com/health/parkinsons...

Instead of choosing ONLY the cold path of the Laboratory, the synthetic and the patentable, turning our backs on Nature, let us take the BEST OF BOTH worlds: the Laboratory and Nature, because without anti-Parkinson's foods, without medicinal plants, spices, phytochemicals and other natural treasures, such a powerful adversary, with so many facets and forms, can never be defeated.

The Gordian knot of Parkinson's cannot be solved directly because of its complexity (which attracts, traps and drags everyone to the bottom of the sea like the Maelstrom whirlpool). Someone, like Alexander the Great millennia ago, must have the determination to cut it out with a sword. This, translated into more understandable language means, to consider without too many prejudices all that we have and works (in spite of "studies to the contrary") and to act... And not wait any longer.

Natural antioxidants against oxidation (Fahn)

Natural anti-inflammatories against neuroinflammation (McGeer).

Iron and aluminium chelators against their accumulation (Blaylock).

Mitochondrial energy boosters (Phillipson).

Liver protectors (Borah).

Restorers of sleep and pineal/extrapineal melatonin (Pierpaoli, Reiter).

The Parkinsonian world is made up of three realities: the patients (or the disease), the treatments and the world that has grown up around these two (specialist doctors, associations and therapists, foundations, pharmaceutical industry, insurance, etc.).

For some mysterious reason, each "actor" in this drama lives in his own bubble within the Parkinson's labyrinth, which shows a facet of himself to each person who enters his territory (patient, family member, doctor, researcher...). And there are many veils that prevent us from seeing things as they are. As in some science fiction films, it seems as if Parkinson's defends itself by trying to take over our minds and lives, and it does so by altering our perception, similar to what happens in nightmares (our mind becomes confused, we move with difficulty, we are assaulted by a certain paralysis when it comes to seeing, thinking and doing...).

Once again, history is a teacher of life and we could say that it is also medicine, through the information that leads to rediscovering forgotten, hidden treasures.

Can historical knowledge be the beginning of a Copernican revolution, of 180 degrees in the treatment of a disease?

And the answer is a resounding yes: Del Rio Hortega in 1919 on Alzheimer's and Manfred Karobath in 1971 on Parkinson's...? Microglia, neuroinflammation in dementia; multiple deficiencies in addition to dopamine in "paralysis agitans"?

Cutting the Gordian knot is treating the mitochondria. Years later, it is also reversing the iatrogenesis. It is no longer just Parkinson's...

In my humble opinion, Parkinson's has been unravelled in the studies of Fahn, McGeer, Karobath, Phillipson, Patel, Borah, Aoyama, Espay, etc.

In the past (the last five decades) and in other cultures (centuries and millennia of testing and adjustment), sufficient clues to the disease are possibly to be found.

[Bolt_Upright]

Well said parkinsonshereandnow!

The Gordian knot of Parkinson's cannot be solved directly because of its complexity (which attracts, traps and drags everyone to the bottom of the sea like the Maelstrom whirlpool). Someone, like Alexander the Great millennia ago, must have the determination to cut it out with a sword. This, translated into more understandable language means, to consider without too many prejudices all that we have and works (in spite of "studies to the contrary") and to act... And not wait any longer.

Natural antioxidants against oxidation (Fahn)

Natural anti-inflammatories against neuroinflammation (McGeer).

Iron and aluminium chelators against their accumulation (Blaylock).

Mitochondrial energy boosters (Phillipson).

Liver protectors (Borah).

Restorers of sleep and pineal/extrapineal melatonin (Pierpaoli, Reiter).

[WinnieThePoo in reply to Bolt_Upright]

What confuses me is how you KNOW they work when many have a long term not short term effect, and you don't even have PD to test on yourself.Never mind that tiny detail of being sure which supplement in the crowd is doing what.

[parkinsonshereandnow in reply to WinnieThePoo]

Thank you for your comments.

I know they work in a variety of ways:

- the last 12 years of my father's life (although he was afraid to try almost everything, some things he did try and they worked for him. But in the end the fear of high blood pressure, interfering with medication, etc. won out and he gave up almost everything except omega 3 pearls);

- the experience of 14 years of forums, chats, etc. (since 2007), in which patients (often confused, sometimes more lucid in their self-knowledge) and family carers (some very motivated and more informed than the doctors on certain aspects, others did not understand their sick relatives) have given me the conviction that something was not working in all this;

- I don't consider myself a "genius". As Borges said, I am not proud of what I write but of those I have had the good fortune to read. And I have read the best, the wise ones (no more important than listening to the sick and familiar veterans): Birkmayer, Fahn, Karobath, Shults, Beal, Charlton, etc.

- two intuitions struck me: that Western Neurology had gone astray and that if I had the courage to abandon my prejudices, I would find what I was looking for.

- my personal experience as an allergic asthmatic: according to the most cited studies, vitamin C was not a proven solution; however, I have been living a normal life for more than 15 years thanks to vitamin C. I just had to find the key studies on the subject. All you had to do was find the key studies by Subramanian, Hemila and Rao. And so it has been with Parkinson's disease.

- There is a fairly common pattern among all the patients, doctors and therapies that claim to improve or reverse Parkinson's or many of its symptoms. Those coincidences are what I have been looking for in recent months.

As a historian, I am on my home turf. And I can say that current neurology has failed to sufficiently cure or alleviate the disease. I don't care about the studies in this field (99.99% of the studies made us wary of the Mediterranean diet in terms of cardiovascular health for 50 years), because I see the results in the daily lives of thousands of patients in my group and in other forums, blogs and chats all over the world, in Spanish and English.

Neither the extraordinary means of current research nor millions of patients trying CAM therapies on themselves have yet solved the enigma (it is estimated that 40-70% of patients use them).

The combination of levodopa with carbidopa/benserazide together with the "mirochondrial" cocktail with melatonin, alpha lipoic acid, acetylcarnitine, coenzyme Q10 and vitamin E seems to be one of the ways to try (Phillipson, Perlmutter, Zhang). Each patient must find their own, with the help of their doctor.

We have nothing to lose. I ask you to trust me in writing what I have published.

[Patrickk]

Bydureon (a.k.a., Exenatide), a repurposed Type 2 Diabetes drug is now in third-stage trials in UK for stopping Parkinson’s in its tracks — results expected 2023. Testing — mice, open label, double blind — has been going on since 2010 and it has been positive every time.

scienceofparkinsons.com/201...

According to a very sensitive test, Homeostasis Model Assessment for Insulin Resistance (HOMA-IR), 2/3 of Parkinson’s patients are supposed to be insulin resistant. IR may be treated with Bydureon (Exanatide). Just an angle that might get us one step closer to getting Bydureon.

cureparkinsons.org.uk/news/...

[Hidden]

I don't have the answer for Parkinson's but I think you are onto something. I have been going through the Pubmed database and writing down every nondrug and nonsurgical factor I can find and making a list. I haven't counted my list lately but I think it is in the hundreds now - hundreds of things that might help or things to avoid that might hurt. My husband's doctors mentioned maybe one or two. We've just started on the list and my husband is getting better. My goal is 1% improvement from each of 100 factors, and I've already found over 100 diet and lifestyle type factors that have shown research based improvements. We're also doing extensive nutrition, gut and biomarker testing that has been identified as being off in PD, similar to the Breseden protocol for Alzheimer's. The testing has been really fruitful already and we are only about 25% through my list. He was really out of range low on vitamin D and uric acid, and less than the Breseden recommendations on B12. He is making diet changes, getting more sun and taking supplements, plus he is doing stretching, acupressure balls, Qi Gong and posture exercises.

[Fatherof5 in reply to Hidden]

Brenda49, I could not agree more with your approach. Between the support group I participate in and my wife’s nutrition/public health training I have realized that PD is complex and as a result so will be the solution. We keep our eyes and ears open to possible therapies to solving this ‘knot’ knowing it will require many steps to slowly untie it. Sadly, the neurologists I have seen so far seemingly smile and nod when I talk about alternative therapies so as just humor me

[Hidden in reply to Fatherof5]

I agree it likely has many causes. If Parksinon's is a multi-factorial disorder and may be slightly different for everybody depending on their genes and microbiomes, then maybe everyone's solution will be complex and need to be individualized. It doesn't seem to be something like the measles with one specific cause.

I don't understand why the doctors don't mention testing uric acid and a diet to raise uric acid levels, if needed. High uric acid levels are linked to gout, and gout patients get put on uric acid lowering diets. Why don't Parkinson's patients get tested for uric acid and put on uric acid raising diets? I did a search on Pubmed for Parkinson's and uric acid with 285 studies being returned. Many of those studies find consistently low uric acid levels in Parksinson's patients and an inverse correlation with PD to gout. When researchers do the diet survey studies, the one fairly consistent finding seems to be foods that raise uric acid levels are linked to healthy controls, and lowering UA foods to PD.

[Hikoi in reply to Hidden]

When was he diagnosed Brenda49?

[Hidden in reply to Hikoi]

He had tremors starting in spring, diagnosed by a neurologist and put on l-dopa a couple of months ago.

[Hikoi in reply to Hidden]

Ahh thankyou. Now i know the context you are writing from. I would have a very different experience of PD having been diagnosed in 2008 and watched and read all the ‘miracles’ but unfortunately i don’t know one that has worked long term.

[Hidden in reply to Hikoi]

I will keep you posted on what we find out and you can do want with the info. He has been able to drive again as of today. Check out the studies on Pubmed on PD and improvements in humans and animal models with vitamin D, B12 and uric acid. These are things he tested low in, has been correcting and is improving. It is not a miracle. They are deficiency corrections. The reason we knew to test for these things are from the Parkinson's Pubmed studies.

[Hikoi in reply to Hidden]

I still drive, 13 years post diagnosis and I take c/l . My blood results show raised oesinophils but nothing else despite being on meds all these years. PD is not like measles, that is due to an infection. I dont believe PD is an infection but it is a multitude of diseases and there will need to be individualised treatment. I think the jury is out on the right diet for PD.

[Hidden in reply to Hikoi]

I think that is why the gut and nutrition testing is so important. We're tweaking our diet and he is taking supplements (plus all the other things we're doing) and then retesting to see what works. So far his symptoms seem to be improving along with the deficiency corrections, just like PD people in the Pubmed studies. It is not a miracle. It is following the science.

[kevowpd in reply to Hidden]

And how many of those Pubmed studies were placebo controlled with appropriate blinding?

A an awful lot of things can offer the appearance of "working" in the first several years after diagnosis. Many PwP feel pretty good without really doing anything during that period. It ain't called the honeymoon period for nothing.

It's great to be a dedicated and open minded spouse, and every day with manageable symptoms is a blessing, but the true tests are down the road (if he was accurately diagnosed).

[Hidden in reply to kevowpd]

From the looks of it, most of them have control groups. There are hundreds of them on Pubmed. Many are can't hurt, might help kinds of treatments like optimal vitamin D levels, acupressure, Qi Gong, Tango lessons, yoga, and coconut oil one can do at home, or deficiency corrections one can determine with simple lab tests. I've been going through Pubmed and have well over 100 listed out.

[JohnPepper]

I did not have the time to read all your interesting article, but I would assume you are looking for something that can slow down the progression of Pd or even reverse it?

I have reversed most pf my symptoms and have been Pd0medication-free for twenty years.

All I did was fast walking, adjusting my attitude, positive thinking, managing my stress levels and some mental stimulation. None of which costs a cent and all are very healthy .

Try it!

If you would like some proof of others doing what I have done then PM me

[parkinsonshereandnow in reply to JohnPepper]

Hi John.

Over the last few months I have been able to delve deeper into the importance of exercise and physical activity in Parkinson's disease. From exercise cycling in tandem with people without Parkinson's to martial arts like taichi or disciplines like yoga.

I have always felt that your testimony is truly important to the community.

Fortunately I don't have Parkinson's, although I know that one of my father's Achilles heels was his sedentary lifestyle. If he had changed his "lifestyle", everything could have changed.

I think it is very important for patients and their families to know about your case and your proposal.

Moreover, I have no doubt about the veracity of what you say and I will reflect it in my next book. There are people who have been cured through meditation, certain types of exercises... and I show the studies that reflect this.

Thank you. I will write to you very soon to ask you for this information.

[JohnPepper in reply to parkinsonshereandnow]

Thanks!

Have you seen this article that appeared this weekm in HU : From: John Pepper journals.physiology.org/doi...

It says it all!

[Propertytyphoon in reply to JohnPepper]

It certainly seems to, thank you for sharing

[Hikoi in reply to JohnPepper]

It is a 2013 article. It says it all - I dont think it does. It doesnt mention Parkinsons! It is comparing a polypill with exercise!

[JohnPepper in reply to Hikoi]

You are nit-picking

[Hikoi in reply to parkinsonshereandnow]

“There are people who have been cured through meditation, certain types of exercises... and I show the studies that reflect this.”

Can you give the references please.

[parkinsonshereandnow in reply to Hikoi]

Neuroscientist Karishma Smart and colleagues published in 2016. A 78-year-old man, with 16 years of diagnosed disease, reportedly experienced remission of his Parkinson's disease. Diagnosed by a neurologist, he responded well to levodopa and underwent a positive SPECT DaT scan as confirmation of the Parkinson's diagnosis, which seems to rule out diagnostic error. The practice of daily deep prayer/meditation over years would be the most characteristic and possible cause. Pagnoni in 2007 reported that regular meditation can counteract damage to the striatum and dopaminergic depletion.

Smart (2016). A potential case of remission of Parkinson’s disease. J Complement Integr Med.

Pagnoni (2007). Age effects on gray matter volume and attentional performance in Zen meditation. Neurobiol Aging.

[Hikoi in reply to parkinsonshereandnow]

Thanks for your reply hereandnow. I have read this case study before and it was the only claim of remission i found that had any merit but reading it again, brings up a number of questions. Anyone can publish in journals now if they pay the money and it can look convincing but this article has no peer review, is published in a complimentary health publication and no other as far as i can see. I couldnt find the author profiles.

I cant comment on the radiological/ DAT scan info but I am left wondering why a 62yr old developed PD but was able to treat his symptoms with meditation if meditation didnt stop him getting PD in the first place. Wouldn't it have stopped the dopamine depletion and damage to the striatum? But I have the same question about exercise. Why do top athletes develop PD if the best treatment is exercise? There is much we have to learn yet!

There are other puzzling aspects. He had tremor one hand but lack of arm swing both sides. But I dont totally discount this story, it leaves more questions than it answers.

However I don't think one person who may have had symptom relief proves your point and importatly there is no claim of cure.

[parkinsonshereandnow in reply to Hikoi]

Hello, Hikoi.

Thank you for your reflections.

When I chose the title "The cure for Parkinson's" for my next book, it was a challenge for me to force myself to search to the ends of the earth and delve as far back into the past as I could.

The first thing they confess everywhere is that it is a complicated disease (syndrome) with variants. And that it has to be treated for a long time or a lifetime.

I have kept the title because I honestly believe (otherwise I would be breaking the promise I made to my father) that a change in the view of this disease will help a lot: to delay its onset (between 7.7 and 18.4 years according to studies), to slow down the progression (homocysteine?, restoration of mitochondrial energy and autophagy?), reduce the adverse effects (in China, the cultural custom of moderation and lower doses of levodopa, possibly combined with medicinal plants, has a much lower impact on dyskinesias), etc.

We lose nothing because the project of Western neurology is failing in the face of an impossibly complex challenge. There are more and more cases (the explanation of the ageing population, as a geographer, seems to me to be very limited: since there is an increasing percentage of early-onset and even young sufferers), CAM is being used more and more, and the testimonies in forums and chat rooms do not match the smiling images of the official world, etc.

The draconian requirements of publication in medical journals, peer review, the critical writings of former editors and editors of major journals on economic interference, etc., have shown a failure in the face of Parkinson's complexity. They were born with the intention of ensuring rigour and have ended up limiting novel ideas and making many scientists think twice before putting forward new lines or the hated criticisms of accepted ideas (Oliver Sacks had his papers rejected worldwide in 1972 for questioning levodopa for Parkinson's patients at risk of dementia. And I think he got the message, and has since devoted himself to his wonderful books and articles on neurological anecdotes).

Levodopa itself suffered from that experience: scientists before Cotzias in 1967 were on the verge of discarding levodopa for Parkinson's because the therapeutic effects required very large doses with intolerable adverse effects (as explained by neurologists like Stanley Fahn in 2015 and others).

From my experience in forums and chats, many athletes who develop Parkinson's tend to have a very high level of self-demanding, high stress. And if they don't sleep well at night, or because of any genetic peculiarity the neuroprotective mechanisms are inferior to the neurodegenerative ones (psychological and oxidative stress generated by intense exercise), it turns against them.

Parkinson's needs rigour and studies (I am still waiting for those of reduced and oxidised vitamin C in liposomal form or with doses of 400 mg riboflavin as widely used in the treatment of migraine, together with thiamine and nicotidamide?), but also open-mindedness and pragmatism.

If we look for the evidence before we use something, why is it that high levels of the neurotoxic homocysteine are still not routinely treated in everyone taking levodopa?

The key is not to compare the levodopa era with the previous era, but with what might have been if we used vitamins, vitaminoids, phytochemicals such as resveratrol, curcumin or EGCG extract from caffeine-free green tea such as Teavigo, or natural levodopa from Mucuna, together with sedative plants, laxatives, massage, yoga, taichi, meditation, etc.

[Hikoi in reply to parkinsonshereandnow]

Hereandnow

You make a lot of claims without providing any references. I cannot check or followup what you write without them. It would mean I have to take you on faith and not science and I have no intention of blindly accepting . (I also have trouble following your argument, but that maybe language differences.)

".... a change in the view of this disease will help a lot: to delay its onset (between 7.7 and 18.4 years according to studies), to slow down the progression."

I dont understand how a change in the view of the disease would delay onset and what studies does this refer to? I have never heard or read anything about this, especially the times given.

You then comment on Parkinsons in China and dyskinesia and you comment that CAM is being used more. Are these opinion not fact, along with your ideas about why top athletes get Parkinsons.

I wouldn't describe publishing requirements as Draconian though the process is less than ideal which is why we now have open access articles and the Creative commons movement.

As to Sacks getting a hard time from his colleagues - it happens. I think this maybe what you refer to. In June, Sacks described three patients with PD and dementia, in which levodopa caused a marked cognitive worsening, and suggested that the medication should be administered carefully in patients with dementia......see: scielo.br/j/anp/a/qJdpd86HB... time proved him right. From my reading they were being given 10 - 100xs current doses. It is not suprising there were side effects. It took time to get dosage right and to add carbidopa to alleviate vomiting but this is not in itself a reason to reject science.

You write "The key is not to compare the levodopa era with the previous era, but with what might have been if we used vitamins, vitaminoids, phytochemicals such as resveratrol, curcumin ......." So how does one compare the current situation with a hypothetical era? I dont believe it is possible.

What I can say with some degree of confidence is that no one on the forum has reversed or cured their PD. You accept J Ps claims so I wonder if you know the diagnostic criteria for PD? Not one neuro or doctor has supported him publicly, in fact just the opposite, he was removed from his position as Chair of Parkinson South Africa for his claims. The last neuro he saw said he did not have idiopathic PD, and his tremor is not a PD tremor.

But increasingly I notice people do not accept evidence that conflicts with their belief. So you will write a book on The Cure For Parkinsons and I will remain a skeptic and stick with the science until a cure is found.

[parkinsonshereandnow in reply to Hikoi]

Greetings again, Hikoi.

Although I respect your opinion, I am not going to enter into a debate between Science and Science which in the future will be orthodoxy (open-minded and non-patentable).

The main source of my knowledge, after reading books and studies, is the daily experience in chats and the opinions of patients and carers.

I will try to be more precise so that the difference in native languages is not so noticeable, or not so much that it affects clarity.

I do not renounce Science (for Science is Schaffner's 2019 study on the role of vitamin B12 in silencing the LRRK2 gene; Monti's 2019 study on the benefits of oral and intravenous NAC; or Fullard's 2020 study on vitamin D and Parkinson's, to name just three of hundreds or thousands).

When I say that a new vision will change everything, I mean that most sufferers I know live under the brutal trauma of diagnosis and the prognosis they fear.

To cut a long story short, as an example, just one type of Mediterranean diet can delay Parkinson's by 17.4 years in women and 8.4 in men (Metcalfe-Roach 2021); regular coffee consumption delays the onset of Parkinson's by 8 years (Benedetti 2000); green tea consumption by 7.7 years (Kandinov 2009); moderately high doses of vitamin C and E delay the need for medication by almost 3 years (Fahn 1992); and so on.

This is the science in which I place my hope.