Regarding levodopa/mucuna: is this true? - Cure Parkinson's

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Regarding levodopa/mucuna: is this true?

Godourtruehealer profile image

If levodopa is used as a lifetime remedy, your body's intricate system for monitoring hormones will be short circuited. Sensitivity of the monitoring system is degraded and the system itself is eventually disabled.

I read this in a book, is this true? How should a PwP solve this if he/she needs levodopa/mucuna at some point in time? Or is there any alternative?

Here are the full extracts:

“Many people think of Parkinson's simplistically as a deficiency of dopamine. The "disease" is described by most health care providers as such. (…) Even if there is a deficiency of dopamine, the critical question turns on what is causing the deficiency of dopamine. There can be many reasons for this.”

“Symptoms of Parkinson's are aggravated by imbalances of over 39 different neurotransmitters. When you take Mucuna (or any dopamine supplement for that matter) you are making a decision to focus on only a tiny fraction of the problem. The body makes very fine adjustments to the production and distribution of hormones continuously, second by second, minute by minute. Your body initiates a maze of intricate adjustments to produce and distribute the other 38 neurotransmitters when you take any dopamine lookalike. Ingesting a single synthetic hormone once a day creates an instant imbalance. The body is challenged with the task of re-balancing all the other 38 hormones that must be continuously manufactured and distributed to the tissues. The "adjustment" that comes from taking a dopamine supplement is crude. Mucuna is taken once or twice a day. The body produces and distributes hormones continuously each and every second of the day. Do the math. The difference is mind-boggling. If the choice is between the body and Mucuna, I am betting on the body to do a better job at balancing hormones.”

“A second challenge you will encounter if you decide to take Mucuna - and keep in mind this may be a good choice for you - is that you are giving your body the signal it does not need to produce dopamine on its own. Think like your body and you will understand the long term consequences of what happens when you take a dopamine producing supplement like Mucuna.”

“Here is the decision sequence: Your body is busy with the work of adjusting and balancing hormones which, after all, is one of its important jobs. Mucuna mysteriously appears in the digestive system. There is suddenly and unexpectedly an external intrusion into the body. The body begins to ponder:

"Who is in charge here?"

A critical function of the body is suddenly and unexpectedly being handled by someone else. The mind then says to itself:

"If someone else is doing my job, why should I bother?"

Isn't this just what you do when someone else begins doing the job you thought was your responsibility?”

“A reason that cells in the substantia nigra wither away is because dopamine is being supplied by an external source. Cells that produce dopamine are no longer needed. You either use it or lose it. In this case your body eventually loses this capability as it surrenders its responsibility for producing dopamine.”

“(…) also observed (…) that Mucuna can induce the "same adverse effects as synthetic levodopa if consumed in large quantities over a long period.”

“To summarize, Mucuna may provide welcome relief in the short term. But, if it is used as a lifetime remedy, your body's intricate system for monitoring hormones will be short circuited. Sensitivity of the monitoring system is degraded and the system itself is eventually disabled. Your body gradually gives up its charge at birth to maintain health and wellness. You eventually begin to feel lousy as your overall health deteriorates."

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Godourtruehealer
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33 Replies
park_bear profile image
park_bear

This sounds really impressive and science-like but is merely a bunch of fear mongering lacking in scientific validity. Levodopa has its drawbacks, but the allegations made in the cited text are not among them.

Godourtruehealer profile image
Godourtruehealer in reply to park_bear

Thank you for your answer.

I came accross this study, see below. Does this not suggest that levodopa impairs the bodies own production of dopamine on the long term?

"The present results suggest that long-term L-DOPA treatment results in significant loss of 5-HT in serotonergic and dopaminergic regions of the brain. Furthermore, while L-DOPA metabolism per se was uninfluenced, dopamine synthesis was severely impaired in all the regions."

source: pubmed.ncbi.nlm.nih.gov/179...

park_bear profile image
park_bear in reply to Godourtruehealer

The first sentence in the abstract is not correct, and betrays a a prejudice on the part of the investigators: " long-term therapy leads to motor and psychiatric complications". The notion that long-term levodopa therapy leads to dyskinesias been disproven by this study: academic.oup.com/brain/arti... "We conclude that motor fluctuations and dyskinesias are not associated with the duration of levodopa therapy, but rather with longer disease duration and higher levodopa daily dose." I am not aware of any studies showing levodopa usage leads to "psychiatric complications". Hallucinations and other such complications are a consequence of advanced Parkinson's.

Next: "Rats were administered L-DOPA (250 mg/kg)". Applying the proper conversion to calculate human equivalent dose gives us about 30 mg/kg. For a 60 kilogram human that would amount to 1.8 grams daily, which is a high dose - the kind of dose someone in late stage Parkinson's would need. I double checked materials and methods in the full text and these were normal rats, not Parkinson's induced rats. Using this kind of levodopa dosage in a normal animal is not a valid experimental design and will not lead to valid results. They found that endogenous dopamine synthesis was suppressed. Of course it would be suppressed, since they were overdosing these animals with levodopa which is converted to dopamine in the brain. These results do not apply to a Parkinson's patient taking a therapeutic dose of levodopa.

SilentEchoes profile image
SilentEchoes in reply to park_bear

"I am not aware of any studies showing levodopa usage leads to "psychiatric complications"." I wrote a post about this 2-3 years ago and people jumped all over me when I said long term levodopa use leads to Lewy Body dementia. Studies came out about 20 years after the introduction of levodopa/carbidopa raising red flags and they were very quickly squashed and now dismissed as old research. Your doctor's allegiance is to the pharmaceutical industry.

park_bear profile image
park_bear in reply to SilentEchoes

I took a look at did not find anything. Do you have a link to a study supporting your contention?

SilentEchoes profile image
SilentEchoes in reply to park_bear

You must not be asking Google Scholar the right question and cherry picking the results. Is levodopa toxic to patients with PD? n.neurology.org/content/47/...

This paper was published in 1996 (abstract only) and the toxic effects of levodopa had been debated for the preceding 20 years. The science is not settled on the subject.

"Concern over motor complications has largely been superseded by concern regarding increased oxidant stress from levodopa therapy and the possibility that such stress can lead to more rapid progression of the disease itself, i.e., enhance further neurodegeneration."

I have a different horse in the race and a mother who died from complications of PD. I witnessed first hand the course of her treatment and the devastation of her intellect. I'm not trying to scare anyone, more than anything I believe in informed consent and we as patients aren't getting that from the doctors who treat us.

Peace,

SE

park_bear profile image
park_bear in reply to SilentEchoes

What the full text of this review has to say about the matter:

"Could the high incidence of dementia now being encountered in PD be related to chronic levodopa exposure, or is it simply due to the natural history of the combination of aging plus parkinsonism? So far, there is no convincing evidence to support the premise that levodopa is contributing to the development of progressive cognitive impairment in patients with PD. "

SilentEchoes profile image
SilentEchoes in reply to park_bear

I think levodopa is a dead end.

kevowpd profile image
kevowpd in reply to SilentEchoes

So it emerges that, despite preaching 'informed consent', you were actually spreading misinformation by suggesting that a paper supported your assertion when it absolutely didnt.

Perhaps people 'jumped all over you' (which i am sure was simply polite disagreement) in the past becuase you were doing the same then, too.

SilentEchoes profile image
SilentEchoes in reply to park_bear

"So far, there is no convincing evidence to support the premise that levodopa is contributing to the development of progressive cognitive impairment in patients with PD. "

The absence of evidence of harm doesn't make something safe. There is legitimate concern that Levodopa increases oxidative stress and contributes to progression and can lead to dementia.

Is the lack of evidence of harm because no one is doing the research? Would someone risk their career to show harm from a cashcow?

Godourtruehealer profile image
Godourtruehealer in reply to SilentEchoes

Thank you. Do you have a study, a source? It would be great.

SilentEchoes profile image
SilentEchoes in reply to Godourtruehealer

Glad you asked.

pubmed.ncbi.nlm.nih.gov/326... forum.jackkruse.com/index.p...

Dopamine has an inverse relationship to another important neurohormone called serotonin. As dopamine levels rise, serotonin levels fall. Serotonin is converted into melatonin, an essential hormone that assists in restorative sleep. With inadequate levels of serotonin, melatonin levels fall and sleep suffers.

This feedback loop continues to destabilize physical and mental well-being and is a significant factor in the development of metabolic diseases like diabetes, high blood pressure, heart disease, obesity, cancer and mental illness.

I'll write more on this later, but it all circles back to dysfunction of the mitochondria called cellular respiration and the production of ATP - the universal energy carrier of all life on earth. ncbi.nlm.nih.gov/pmc/articl...

If you repair mitochondrial function and restore neurohormone balance are you still going to need levodopa?

SE

park_bear profile image
park_bear in reply to SilentEchoes

" repair mitochondrial function and restore neurohormone balance"

This is essentially curing Parkinson's. Of course we would all like that.

SilentEchoes profile image
SilentEchoes in reply to park_bear

and ALS

park_bear profile image
park_bear in reply to SilentEchoes

Your first citation is to a study merely indicating there are different kinds of tremor. Your 2nd citation is to a forum post. I have had my fill of your citations that fail to back up your claims.

SilentEchoes profile image
SilentEchoes in reply to park_bear

The forum post is for people to do self-directed research.

Study Conclusion: These tremor phenotypes may be associated with different underlying pathophysiologic mechanisms, requiring a different therapeutic approach.

Levodopa isn't one size fits all.

park_bear profile image
park_bear in reply to SilentEchoes

That much is true, but that is not what you attributed to this reference in your prior comment.

Godourtruehealer profile image
Godourtruehealer in reply to park_bear

This guy in the video is saying that (taking levodopa too often) down regulates the density of the dopamine receptors. He says:

"If you increase dopamine levels too quickly and too often, it will down regulate the density of the dopamine receptors that you have on your neurons which essentially makes you less sensitive to dopamine. So you really want to avoid that because when that sets in, dependency also tends to set in. Now you really want to avoid dependency on something like that because when you get dependent on something; a compound, a pharmaceutical food, I mean really anything, it's a sign that you're causing damage to neurons and receptors in your body and you really want to avoid that..."

Link: youtube.com/watch?v=_H3o7kE...

SilentEchoes profile image
SilentEchoes in reply to park_bear

I agree with GOTH and experienced this myself with thyroid hormone supplement and the atrophy of my thyroid gland. The real problem is "resistance" to the hormone/neurotransmitter.

Curious_Fred profile image
Curious_Fred

This is a bit misleading "A reason that cells in the substantia nigra wither away is because dopamine is being supplied by an external source." Is very over generalised, At the European Parkinson Therapy Centre we use a combination of factors. Levadopa is just one and Mucana is Levadopa but without the Cardiodopa to protect it.

Godourtruehealer profile image
Godourtruehealer in reply to Curious_Fred

Thank you.

But does levodopa stop the bodies own production of dopamine on the long term?

park_bear profile image
park_bear in reply to Godourtruehealer

Per my previous comment, the study you cited in support of this idea did not use valid methods.

Godourtruehealer profile image
Godourtruehealer in reply to park_bear

Wat do you think of this comment which I saw in another post? Its somehow related to this topic:

"This is the correct story I think. It does matter that the mucuna and LDopa are different as manufactured or collected, concentrated and purified (all distinct and consequential aspects), but practically as or more immediately significant for the person I think is that over time WE change in several ways, partly due to disease progression and partly due to the presence of the LDopa that we didn't produce but that was introduced from outside, because its presence causes physical changes and may include changes in "receptor regulation," receptor positioning, receptor activity, and the like, where the presence of a substance starts (sometimes several) feedback mechanism that, in different locations to different extents even, alters the number of naturally occurring receptors or cells or cell parts involved with producing and signaling the neurotransmitter amount or mix.

Your brain may think that, since there is ample LDopa or simply more cells producing it or using it, that there are too many actual cells or too much production, and may thus curtail actual production, so that now when withdrawn or being taken up or depleted (consumed, changed to waste product), you now "fall off a cliff" until you get more from outside...this is one single illustration of mechanisms that abound throughout your nerve and endocrine systems. It's as if, walking on a floor told the floor how much lift it needed to give you to keep you on the floor, then someone with cables picked you up, the floor noticed that there was less weight on it, and weakened the floor to keep all the signals in equilibrium. Then the cables let you back down on the floor and it is not ready and you crash through it. They call this a "negative feedback loop." (Another more directly scientific name is "receptor down-regulation.") Such changes can cause all sorts of consequences, including needing more and more, or responding less and less, or introducing side effects of various sorts. It's a well known, widespread principle of brain signaling and functioning development all up and down the age range.

One way that can work is that you can be highly sensitive to a very refined or concentrated amount of the active ingredient.

So smoothing out by reducing the amounts, or introducing more gradually, or selecting a less concentrated or less highly refined version, and schedules or timing, and gradually building to a more sustainable, less highly sloped, encounter, reducing the dips and peaks, trying to get to a smoother climb, longer and more stable peak, and smoother more gradual falloff, may be the thing to try."

Link: healthunlocked.com/cure-par...

kevowpd profile image
kevowpd

There is no evidence that levodopa is meaningfully neurotoxic in PWP. Whether or not ldopa impairs or shuts down the "body's natural production of dopamine" isnt of much consequence when a cell killing disease has already done the same.

Buckholt profile image
Buckholt

Down regulation perhaps?

pubmed.ncbi.nlm.nih.gov/155...

eschneid profile image
eschneid

You can debate levadopa use all you want, without it, in my 16th year with PD, I would be incapable of having any semblance of a normal life. At age 63, I am now having extreme tremors, but can still play basketball competitively twice a week, go out socially with friends & drive 4 hours with my wife to see our sons who are settling in bordering states, mainly due to turning "on" from ldopa. I have been up around 2g of c/l + mucuna for quite a while. It isn't as consistent as it used to be and I probably get closer to DBS/PTT Ultrasound options as I write this, but I am thankful for its existence even as I complain that this gold standard is "still it" after 50 years. As Kevo said, the disease has already destroyed the dopamine producing cells, so worrying about ldopa affecting the body's natural production process seems misplaced.

KERRINGTON profile image
KERRINGTON in reply to eschneid

I use the hand held vibrating ball for tremors which I have had 16 plus yrs. It really helps me.

eschneid profile image
eschneid in reply to KERRINGTON

Thanks Kerr...Is that the Vilim ball & is there anything for legs that you know of?

Eric

KERRINGTON profile image
KERRINGTON in reply to eschneid

No, I got the viraball from amazon. It is rechargeable, and goes off by itself in 10 minutes. It is $98. I have not looked looked at any for legs, do you have leg tremor ?

HekateMoon profile image
HekateMoon in reply to eschneid

Vibrating platforms? Its used for exercice. Im thinking to get one...

eschneid profile image
eschneid in reply to HekateMoon

Thanks HM,I have seen those platforms. Not sure, but will take a look. If you get one, keep us posted.

Parousie profile image
Parousie

C'est la réponse directe à ma prière matinale de ce jour !J'étais en effet déstabilisée par l'effet non satisfaisant de Mucuna...

Je discerne maintenant l'absurdité de compter sur de la dopamine externe à mon corps pour résoudre sa carence !

Reste à comprendre le chemin de la guérison du créateur de mes cellules...

Esperanto profile image
Esperanto in reply to Parousie

Hi Parousie,

I can imagine that you are disappointed that your medication with mucuna is not working, but that should not lead to the conclusion that no production of dopamine via external medication is possible at all. Your predecessor is living proof, 16 years of levodopa with carbidopa + mucuna which seems to give Eschneid a reasonably "normal" life. No doubt that will not have been without disappointments. Even after barely 2 years of PD diagnosis, I see for myself that the effect of these drugs depends on very many factors. This takes assertive consultations with your doctors but also à lot of self-study, which this HU website can certainly help you with. Good luck! 🍀

External supply of dopamine in your brain is unfortunately not yet possible, but if the hopeful experiment in Lille (F) succeeds, it may be possible from 2028 onwards!

Salut Parousie,

Je peux imaginer que vous êtes déçu que votre médicament avec mucuna ne fonctionne pas, mais cela ne doit pas conduire à la conclusion qu'aucune production de dopamine via un médicament externe n'est possible du tout. Votre prédécesseur en est la preuve vivante, 16 ans de levodopa avec carbidopa + mucuna qui semble donner à Eschneid une vie raisonnablement "normale". Sans doute cela n'aura-t-il pas été sans déceptions. Même après à peine deux ans de diagnostic de la MdP je peux constater par moi-même que l'effet de ces médicaments dépend de très nombreux facteurs. Cela demande des consultations assertive avec vos médecins mais aussi beaucoup d'auto-éducation, ce à quoi ce site web de. HU peut certainement vous aider. Bonne chance !🍀

Un apport externe de dopamine dans votre cerveau n'est malheureusement pas encore possible, mais si l’experiment  pleine d'espoir menée à Lille réussit, cela pourrait être possible à partir de 2028 !

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