What levodopa teaches us...

[parkinsonshereandnow]

"What is science? Learn from science that you must doubt the experts ... Science is the belief in the ignorance of the experts. Every generation that discovers something from its experience must pass it on, but it must do so with a delicate balance between respect and disrespect..."

Richard Feynman, Nobel Prize in Physics 1965.

The answers are everywhere. In levodopa itself, with its lights and shadows.

There are doubts and questions that we ask ourselves throughout the disease process, from when something starts to go wrong but we still don't have a diagnosis, to the moment when we have been on medication for years and have tried one after the other various remedies... and we start to wonder if there really is "something" that can help us.

At first we worry about how long the levodopa will be useful. Later, we asked the neurologist about Mucuna pruriens. A little later we didn't ask any more. And finally we look for alternatives that allow us to have hope...

Possibly the answer is to complete the puzzle of one's Parkinson's disease, which, although common in many respects, has unique pieces in each case. And for that we need some powerful "giants" (B1, B2, D3, C, B12) and an army of hard-working "dwarfs" to complete the job (alpha lipoic acid, turmeric with black pepper, magnesium, EGCG from green tea...).

I think we should look at everything differently, ask ourselves questions about everything, take nothing for granted:

1) We have to know well what we are dealing with. Parkinson's diseases, a PARKINSONIAN SYNDROME, rather than a single entity that we can call Parkinson's disease, as it is already stated in many places. We already know that it affects everything from the SN and BBB to the gut, the intestinal flora or the liver itself. Perhaps this is part of the reason for the enormous diversity we find between individual patients and others.

2) As important as the substance, is the DOSE (sometimes the form, the brand...) and the time or patience. When giving a substance in very high doses, cofactors may also be needed.

For example, the most appropriate form of vitamin B12. A trusted brand, either sublingual, oral or intramuscular. 500, 1000, 2000 mcg? The other B vitamins must also be present in a certain amount. Some problems are solved in a week, others need 3 months or more. Time, patience... Sleep is the body's repair shop.

3) And YATROGENIA (not only levodopa, which seems to be one of the most persistent taboos).

But let's see what levodopa itself teaches us:

There is a percentage of patients for whom levodopa does not help. How could we demand from any vitamin what the reference medicine has failed to achieve over the last 50 years.

In the early days, tolerable doses of levodopa were ineffective. And going higher until motor improvement was seen produced unbearable effects (nausea and vomiting). The pioneers of levodopa had to face this problem, which seems to have been solved by Cotzias in 1967. Later, carbidopa/benserazide solved that problem but created others.

Once again, History ("teacher of life", as an ancient Roman sage called it) helps us: Oliver Sacks criticised the use of levodopa in dementia patients until 1972, when he seems to have given up, devoting himself to telling us beautiful eccentricities since then; Walter Birkmayer shifted his focus from bringing levodopa from outside to advocating the stimulation of natural dopamine production by using a vitamin B3 coenzyme, the famous NADH, etc.).

We know that levodopa increases the neurotoxic homocysteine, oxidation in dopaminergic neurons, chelates zinc, overloads the liver, carbidopa affects the metabolism of vitamin B6 and the internal synthesis of the scarce niacin (B3) from tryptophan...

The damage caused by levodopa is so great that it seems like another disease superimposed on the original Parkinson's disease. I first became aware of this when reading Marty Hinz. Whatever his faults and sins, I owe him something so essential to keep me moving towards my dream: the day when Parkinson's disease is a thing of the past, like the encephalitis lethargica depicted in "Awakenings" or the lytico-bodig of the island of cycads (Guam).

Then, the suffering of my father and of so many millions of sick people in this "Parkinson's Archipelago" will have served some purpose... and will be forgotten in the mists of the past.

I never stop dreaming of a cure and I will not give up, nor will so many hundreds or thousands of people all over the world, whatever their native language.

ADDED TEXT.-

All this can be corrected or alleviated. The famous Canadian neuropsychiatrist Abram Hoffer claimed to have successfully treated his Parkinson's patients on levodopa with high doses of vitamin B3 for the mind and coenzyme Q10 for the body, although in reality it is all interrelated.

- for oxidation of levodopa remnants, vitamin C, lycopene from tomato and EGCG from green tea (Berg, Pardo...)

- for liver overload, milk thistle in capsule or tablet form (Lombard, Marjama-Lyons...)

- for mitochondrial complex I involvement, coenzyme Q10, vitamin C, carnitine (Shults, Hoffer, Abdin, Ebadi...)

and so on, almost everything.

[wriga]

"Science is the belief in the ignorance of the experts" And I would add "Science is accepting that your strongest beliefs may be false". Parkinsonshereandnow, you bring hope that the solutions we all seek are hidden in plain sight. If only we could open our eyes.

[MBAnderson in reply to wriga]

Scientist and philosopher.

[parkinsonshereandnow]

I forgot to include in the main text that all this can be corrected or alleviated. The famous Canadian neuropsychiatrist Abram Hoffer claimed to have successfully treated his Parkinson's patients on levodopa with high doses of vitamin B3 for the mind and coenzyme Q10 for the body, although in reality it is all interrelated.

- for oxidation of levodopa remnants, vitamin C, lycopene from tomato and EGCG from green tea (Berg, Pardo...)

- for liver overload, milk thistle in capsule or tablet form (Lombard, Marjama-Lyons...)

- for mitochondrial complex I involvement, coenzyme Q10, vitamin C, carnitine (Shults, Hoffer, Abdin, Ebadi...)

and so on, almost everything.

[wriga in reply to parkinsonshereandnow]

A first step towards the truth.

We have to get rid of the binary belief concerning dopaminergic neurons. The belief that these neurons are either "alive" or "dead". With a performance of 1 or 0. "Alive" being a unique state of perfect health and 100% performance and the only other state having a performance of 0%. This cannot be the case. In aged cells that have in the past, and still are in the present, suffering from oxidative stress, inflammation, mitochondrial and DNA damage, they cannot all be working 100% or simply be dead. No living organism has this binary behaviour. Only by getting rid of this belief can we hope to make progress on research towards reviving damaged neurons.

[AaronS in reply to wriga]

I second this thought, it just lazy stating that the cells are dead, im fully convinced that the cells are dormant.We need the smart people to figure out the WHAT then the WHY, and not just settle with the we think.... its just lazy.

If they were dead, you simply would not see improvements of symptoms of any kind....and the truth is, people on this forum do and keep on reaching new heights, even tho your told you can't.

The maths is wrong and doesn't add up

Rant over ......

[condor39]

On behalf of the thousands who are helped daily by Sinemet or Madopar you are doing more harm than good. Without Madopar, i can’t walk, and I have no side excepts.

[parkinsonshereandnow in reply to condor39]

I understand what you are saying and I have given a lot of thought to the problem: to write about the shadows of levodopa and how to correct them, or to let sufferers discover those shadows as they arise.

And I chose the first way years ago. If there was no solution, I would shut up.

I would rather let a patient know how to alleviate psychosis or dyskinesias and prevent them in time, than keep silent and continue to listen only to talk about the lights of levodopa.

No doubt it is the main treatment since 1970 and it has its advantages. But I am tired of seeing how patients with 5-10 years of treatment do not know anything about how to boost levodopa and prevent or reduce its adverse effects. And the scientific studies are numerous.

I am sorry that it can harm you. Because I assure you that I am very serious about helping Parkinson's patients and their families.

In the FB group in Spanish, Parkinson here and now, we are almost 3200 patients and their families. And there are already sufferers who have gone back to going for walks or sleeping without nightmares, who have returned to gardening or knitting, to writing...

As long as there is nothing better than levodopa, we have to try to make it as effective as possible with the least possible harm. Q10, B1, B2 or B3 are all beneficial in studies of patients taking levodopa.

And I'm sorry to have bothered you.

[rescuema in reply to parkinsonshereandnow]

What I've learned after interacting on HU for a while now is that there are many members who don't want to entertain the alternative ideas and find comfort in simply following their Drs' prescriptions. A few of the long-term members seem genetically blessed to enjoy the full benefits of c/l with hardly any side effects while claiming no need to supplement and tout them a waste of effort and time, often discouraging others. We know the majority of us are not so lucky, so you'll learn to ignore them even if they may come across as hostile. You could only help those who're willing to open their eyes.

btw, I prefer ubiquinol (to Coq10), and since all B's are important, I've resorted to recommending a good methyl/combo B complex plus HD B1 along with Mg, Zn, multies, etc.

Of course, there's nothing wrong with you regurgitating the importance of all the nutrients individually so keep marching on. You're thoroughly welcome here, IMHO. 👍

[Juliegrace in reply to rescuema]

When you say, “the majority of us are not so lucky,” are you including yourself in with those of us who have PD despite not having it? Did I misunderstand what you wrote here and before when you responded that you don’t have PD?

[715McGee in reply to parkinsonshereandnow]

Dear parkinsonshereandnow,, thank you so much for sharing your understanding on the better use of lovodopa. Is it possible for you to be more specific about doses to be used with complementary vitamins which you suggest. Merci !

[Stephan12]

Thank you for the post.