So you know the cause of PD or at least w... - Cure Parkinson's

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So you know the cause of PD or at least what should be the cause or the cure or at least the treatment.

Gymsack profile image
66 Replies

Can we get a bit of reality here folks.

With all the research time and money spent and dead ends pursued there is no smoking gun. There is no known cause of Parkinsons. I know that many think that because their mother also had it that it is hereditary and it would seem reasonable that since you as a child were sprayed with a cloud of DDT mosquito killer by the township that it caused PD. The lacrosse ball bouncing off your head and the broken helmet playing football followed by that smack with the baseball bat surely had an effect . Well yea it probably did but no proof it caused PD.

Health science does not even agree on a definition of PD and what its symptums are and treatment depends on which school your Neurologist went to and how old he is and where you live in the world . Different people, all with the diagnoses of having PD complain of different symptoms severity and reaction to medications.

I understand that we want a cure in our own lifetime and that governments all over the world are pouring money into free medications and doctors wages and research while the incidence of PD continues to grow with more cases every day. At the current rate of increase it is said that 30 % of the worlds population would have it in 100 years ( bad science example) and panic is driving descions. Every one is being blamed from Big Pharma Companies to out dated university texts and snake oil researchers and purveyors of fake cures.

I do not wish to rain on your parade but this is reality and reality sucks sometimes . Reality is what it is, get over it.

.

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Gymsack profile image
Gymsack
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66 Replies
park_bear profile image
park_bear

healthunlocked.com/cure-par....

Gymsack profile image
Gymsack in reply to park_bear

PB ,you are a large rock in the middle of a tangled swamp. I wish I had your steadfast conviction but I see so much waste in research effort , doing the same studies leading nowhere and invoking the same hopeful response that has been seen too many times .The complexity of the problem is mind boggling to this old man who's mind is already boggled.

I am no longer optimistic that others ( researchers, institutions , hospitals, pharma companies or any group like Mj Fox ) will add any thing of substance to this situation . Hope is by itself is a healing agent because when a person thinks that he is in a hopeless situation it is like a self full- filling prophecy and that may be why placebos work . But the constant pattern of hopeful highs followed by disappointing lows is supported by new Parkies all searching for a some hidden secrets that were missed but do not exist.

This web site is helpful to learn and share how others are addressing and living with the disease so that we can better adapt our lifestyle to suit but reality is needed to make this work.

There is no known cause. Now we need to accept that and get on with making life better.

park_bear profile image
park_bear in reply to Gymsack

Thanks for the kind words.

There are 21 mutations known to cause Parkinson's as well as a handful of toxic agents. These set off a toxic cascade that results in misfolded alpha synuclein. That results in Lewy bodies that impair our cells, particularly dopaminergic neurons. This is the cause of Parkinson's as detailed in my post at the above link.

This kind of understanding is necessary to find effective treatments, but that result cannot be taken for granted, nor does it arrive on a schedule.

There is a huge amount of wasted research - All the studies that pre-treat with the test substance prior to applying toxicant are a waste of time and resources and are noise obscuring useful signals.

I believe the point you are trying to make is we cannot spend our lives awaiting some new miracle pill that will solve all our problems, and with that I agree.

LagLag37 profile image
LagLag37

I know how you feel but I still have some Hope. 🥊

Gymsack profile image
Gymsack

PB : " I believe the point you are trying to make is we cannot spend our lives awaiting some new miracle pill that will solve all our problems, and with that I agree."

I believe that you are correct, it just irks me that you can say it in one sentence while I blither on.

Laglag, I still have hope, hopelessness is the end of life . I just think we should concentrate on using what knowledge we have to make all the lives here less difficult and ease the burden of PD. Plus there are thousands of us , many who have been here a long time and there is an incredible treasure of posts in the archives. Yet I wonder, are we accomplishing anything ? Does any researcher or doctor or anyone professionally associated with PD even read this stuff or are we just noise in the wind.

Dabaa profile image
Dabaa in reply to Gymsack

If the dismissive gaslighting during my last Neuro visit is anything to go my, sadly the latter.

Patrickk profile image
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 2024. 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/...

South Korean researchers have learned how to dial our cells back to stem cell stage -- and are now administering monkey stem cells to parts of their brains that are short on dopamine producing cells -- with the hope they will fill in and take over the job.

Started this before with stem cells from other monkeys and had some success I think until local immune systems attacked foreign cells.

So there is even realistic hope for a cure.

SilentEchoes profile image
SilentEchoes

8 years of my life researching isn't trivial. My mother had PD and I have ALS. I was poisoned. I know when, I know who did it and I know what I was poisoned with. It's been medically diagnosed but the cowards in the legal industry know it would end their career if they take my case against Monsanto. I'm not a nobody - Monsanto knows my name and I'm making noise.

Poisons are poison. They ALL use the same biological pathways. There isn't a known [acknowledged] cause because doing so is career ending. Can you imagine the avalanche of lawsuits that would ensue?

Consider yourself poisoned by cyanide. It doesn't always kill you right away. Cyanide is a pseudo halogen and an organophosphate. It's a multipurpose poison used in Roundup, the most widely used pesticide of all time. We know nothing about it's synergistic toxicity with things like mercury, which we all have in our bodies more or less. Some graduate students at the University of Georgia published a paper on glyphosate and mercury synergistic toxicity and it got withdrawn. I suspect they were over the target. DDT didn't go away, it got rebranded. It's a forever chemical it's in the soil and it remains even after the land has been converted to organic. You want to get better - clean up your lifestyle, detoxify and heal your mitochondria. Quit your griping Gymsack and be glad you're not me.

SE

Michel0220 profile image
Michel0220

Hi Gymsack

I don’t know if a cure will be found in my lifetime and it is possible that we will need to rely on a personalised approach to different types of PD that might require more than one drug anyway.

I think the right approach is to stay on top of new pharma developments but not to wait for them. So, no false hopes but keeping an eye on what science is doing…

In the meantime I use symptomatic drugs currently available, exercise plenty (the best therapy!), eat super healthily, meditate and relax… and enjoy life! We need to become athletes in our own category 😀

Hirric profile image
Hirric

The last thing anyone living with Parkinson’s needs is this type of gratuitous and misplaced “reality” check. Everyone with PD lives the actual reality of their situation every minute of every single remaining day.

Edge999 profile image
Edge999

im pretty sure the cause is the western diet. Something in fried food and dairy. I cut it out and have had an improvement in symptoms. Im following laurie Mischley and im pretty sure she’s going down the right path. A metabolic desease with neurological consequences. Several people reported online to have put it into remission with diet (howard shifke, bisnca mohle, jon coleman) . Many similarities to diabetes. Im putting my money on this and giving it everything ive got

SilentEchoes profile image
SilentEchoes in reply to Edge999

PD/AD/ALS are a metabolic disease but also an autoimmune disease. Or more correctly Neuroimmune disease. If you want to find out test your complement system. frontiersin.org/articles/10...

Metabolic includes mitochondrial respiration. If you can't make adequate amount of ATP you don't have energy for bodily functions. This is the fatigue in neurodegenerative disorders. pubmed.ncbi.nlm.nih.gov/199...

Not enough attention is paid to the endocrine dysfunction that comes with neurodegenerative disease. tandfonline.com/doi/abs/10....

I just want you all to be headed in the right direction. What applies to me applies to you.

In health,

SE

SilentEchoes profile image
SilentEchoes in reply to SilentEchoes

I want to add that Parkinson's disease isn't just about dopamine. Likewise ALS isn't just about motor neuron degeneration. These are syndromes and they overlap. I would argue they are not entirely separate diseases. They have the same root cause - toxin exposure.

The variables are genetics as in vulnerability and lack of ability to detoxify (Gulf War Syndrome).

Type of exposure as in small amounts over time in Parkinson's vs acute poisoning in ALS.

Route of exposure as in ingestion with Parkinson's where the body has opportunity to detoxify vs inhalation where the body goes into full on survival mode dumping ATP, hormones, vitamin reserves etc.

Gut dysbiosis is common to both PD and ALS. While I don't think it's the cause, I do believe it's a contributing factor as part of the immune system.

Diet and lifestyle come into play and I believe this is the difference between fast progression and slow progression. It certainly shows itself in ALS. I was poisoned over nine years ago, I shouldn't still be alive. But here I am 😃

SE

Peter-Jan profile image
Peter-Jan

This seems to work today.com/video/new-vibrati...

Reetpetitio profile image
Reetpetitio

I imagine that frustration, pain and disappointment have driven this post and that is very understandable. Equally, hope is a precious commodity for the human spirit and it saps life force to lose it. I'm sad that it sounds like this has dimmed in you, and this forum can be a place to vent. I would prefer it if you owned these feelings and perceptions as yours, rather than sharing them as objectively 'realistic' and asking us to align with them. I felt depressed and a bit angry after reading your post.

None of us know the future. As you say, there is already much knowledge about Parkinsons that is not being furthered. I think Dr Laurie Mishley's study of those who do exceptionally well with Parkinsons is an excellent place for anyone who feels hopeless and depressed.

There is much we can do. Only yesterday I made contact with a craniosacral therapist who said Yes, he treated Parkinsons patients, and their consultants would comment that they just weren't progressing like they expected. This morning I read of the effectiveness of antioxidant therapy in mitigating oxidised dopamine in the brain, thought to drive Parkinsons (the antioxidant was NAC, which can be supplemented, and of course we can also eat an antioxidant-rich diet eg many dark berries.) Yesterday I saw dramatic before and after videos of people who had done the LSVT-BIG programme to improve walking, and LSVT-LOUD programme to improve speech. A google showed lots of free resources for this, not least of all on Youtube itself. There's always something else to try. Chinese Medicine has very good results with Parkinsons - many herbs including LionsMane mushrooms have been part of their arsenal for thousands of years, alongside an individualised approach to treating imbalances in the body and meridians - ditto Ayurvedic Medicine. I will be putting myself in the hands of a Chinese Medicine doctor.

Whether or not a medical drug ever arrives as a 'cure', there are already so very many things we can do to slow progression and improve current functioning. This forum is indeed an incredible resource. The glass is half empty, and it's also half full.

Sending care your way.

youtube.com/watch?v=LdpfNnn...

SilentEchoes profile image
SilentEchoes in reply to Reetpetitio

"I would prefer it if you owned these feelings and perceptions as yours, rather than sharing them as objectively 'realistic' and asking us to align with them."

I was triggered by Gymsaks post. His reality is not my reality. I fiercely defend my hope. Doctors have gaslit me and tried to destroy my hope. The field is littered with narcissist personality disorders. I was hospitalized recently and a hospitalist put in his notes that I self diagnosed my ALS and there was no EMG evidence. It's a lie but I'm an inconvenient truth that Roundup poisoning caused my ALS. They're going to extreme lengths to attempt to invalidate me - it won't work. I have the receipts. Like MJF said, the person with the disease is the expert. Some more than others I think.

Thank you for your thoughtful comment.

Reetpetitio profile image
Reetpetitio in reply to SilentEchoes

That's really shitty. There's no doubt that Roundup is highly toxic. Wishing you well.

WinnieThePoo profile image
WinnieThePoo in reply to SilentEchoes

So you're just in it for the money?

SilentEchoes profile image
SilentEchoes in reply to WinnieThePoo

You're out of line. This has destroyed my life. No amount of money can make me whole.

SilentEchoes profile image
SilentEchoes in reply to WinnieThePoo

I have reported you. I do not allow anyone to make personal attacks, this is abuse and you know it. You've done this to me several times. I'm not leaving this forum like CC did because of your antisocial behavior. We are all poorer for it if we allow people like you in society to go unchecked. You chose the wrong person to pick on. I fight back.

WinnieThePoo profile image
WinnieThePoo in reply to SilentEchoes

Allow me to clarify. Could you clarify whether you are involved in a legal action against those you allege poisoned you which, if successful would result in you receiving a monetary payment.?And if you are, how much are you hoping to be paid?

We expect researchers to disclose conflicts of interest on their research papers, and given your definitive statements it seems reasonable to ask whether you have a financial interest in the comments you make

SilentEchoes profile image
SilentEchoes in reply to WinnieThePoo

I'm a private person, not a published researcher. I'd like to publish a paper, how do you think that would go? I could publish my own case study. You think I'd get past the peer review gatekeeping?

You've asked a lot of personal questions that I'm not inclined to answer. Again, you're unreasonable. Literally no one else does this but you on this forum.

I don't mind naming names. In 2017 Jeff Bronstein, MD at UCLA agreed to see me under the name of his fellow, Dr. Tammy Pham. I think he was curious to see what delayed effects of organophosphate poisoning looks like. Bronstein told me it could be PNS - Paraneoplastic Syndrome. He told me the science wasn't there yet for neurological injury from Roundup poisoning. It is - he and others at UCLA published it. That's why I sought him out. Jeff Bronstein is one of the expert witnesses in the first Roundup cancer trial in California. You've got to ask yourself why a neurologist is an expert witness for a cancer trial? What's the link?

I believe ALS is a tumorless cancer and the underlying etiologies for cancer and neurodegenerative diseases are the same. Do you think a journal would publish my crazy idea? How disruptive would that be? An untreatable disease is treatable. Discovered by a Citizen Scientist. Maybe give everyone a black eye?

I was poisoned on July 16, 2014. My poisoning is documented at the Minnesota Department of Agriculture. The death of my neighbors cattle herd ($60,105 USD) on the day of my poisoning is documented too. They threatened to sue me if I made this public knowledge 🤷🏼‍♀️

I've been documenting biological evidence - the body doesn't lie. The trauma of being poisoned has taken an emotional toll on me and I have to decide between my peace and enduring the trauma of a trial where I'll probably be gagged in exchange for a settlement.

I should write a book. Maybe I will. If you want your questions answered you'll have to read it. I'll be sure to provide references just for you Winnie ThePoo.

SE

Map of the US broken out by ALS incidence
WinnieThePoo profile image
WinnieThePoo in reply to SilentEchoes

I am sure we will hear plenty more from you on this subject on this forum and that your posts are vital to your success. Although heaven knows at what

Gioc profile image
Gioc in reply to WinnieThePoo

🙄

WinnieThePoo profile image
WinnieThePoo in reply to SilentEchoes

No need to fight. Just respond objectively openly and unemotively. It's a debate. Not everyone will blindly accept your unorthodox ideas

Gioc profile image
Gioc in reply to WinnieThePoo

No she has already answered you but maybe you don't want to understand WTP and then this is a completely senseless comparison. What interests can there be if the poster is anonymous. what you ask is absurd and cynical.

SilentEchoes profile image
SilentEchoes in reply to WinnieThePoo

Remember what MJF said, 'the person with the disease is the expert.' My ideas aren't unorthodox, they come from published research that I've taken the time to dig into. If I can figure this out, you know that anyone with a biology, chemistry, or medical background knows the etiology of these neurological diseases. There are careers and big money at stake. Dr. Richard Doty told me directly that if he helped me (nose to brain pathway), they would come after him. That's my roadblock.

The research is there, you just have to look. Some don't bother others can't. I share my knowledge from LEARNING via my own efforts - I shouldn't be attacked for it. You're free to have your own opinions and disagree with me. But that isn't what you did.

SE

JJAJJ profile image
JJAJJ

I agree with a lot you are saying Gymsack. My husband was diagnosed with MSA-P November 2021. All the doctors said to us was ‘good luck’ . We got a second opinion…the doctor said ‘good luck’. I read everything available, like you do, changed a few things, hoped expensive supplements, lots of love and 😂chicken soup would cure him. However, the gift has carried on giving at a rate of knots. I see the reality but still hope for a miracle. He has not been good the past few days, last night was awful, I thought I’d lost him but he is snoring away now and I’m so lucky to have another day together. x

SilentEchoes profile image
SilentEchoes in reply to JJAJJ

Before my ALS diagnosis, I thought I had MSA - a turbo charged version of my mom's PD. I was sucker punched by my diagnosis. After my EMG at Mayo, the doctor said 'good luck' twice! For months I was afraid to sleep after I learned that I have central apnea. This is my reality. Sharing and connecting with others eases the pain.

I feel your sorrow but also your gratitude and love.

Hugs,

SE

RienPoort profile image
RienPoort

As I understand it the concept of HealthUnlocked is to provide a platform for patients and carers to share information that may not be universally available to all. In other words it's there to help. Your appeal to reality does not help in the slightest!

CuriousMe12 profile image
CuriousMe12

Although there may be 1 or 2 valid points to discuss. There are Too many different random rants to respond. Ì think that if your aim is to completely shut down all hope from all approaches for all people then you should consider that you may have well succeeded for some already on the edge (not me though). Feel better?

kevowpd profile image
kevowpd

I actually like this post, for it creates, or should create, a sense of urgency for living amongst those inflicted, whether directly or through a loved one. The likelihood is that the cavalry isn't arriving anytime soon (even if a 'cure' was postulated tomorrow and given unlimited funding, it wouldn't be available for ~10 years if it did end up working) so enjoy life to the extent you can while you can.

Probably good advice for everyone, really. Even without PD you can have a car accident / heart attack / aneurysm / whatever matter how healthy you thought you were. It can all be over very quickly.

Also, Gym is 75 and 20 years into this game. No kidding he's a bit grumpy. I hope to be as good nick as he is when i'm 20y in. Anytime i hear from him i am encouraged as to what is possible.

Gioc profile image
Gioc

lol

reality? What reality are we talking about? your reality?

Come on Gymbag all “real” things before they were created and experienced by the majority were not real. Let's take a "realistic" medicine like levodopa, even after its discovery it wasn't very "real", on the contrary... it took years before it was accepted by the majority of the scientific community and became reality (see history of Levodopa).

Therefore reality is a caused thing.

Will there be a cure for PD soon or not? Which of these two realities do you want to be in agreement with?

IMO if the majority of us considered that a cure was possible very soon there would be a cure, even today.

Given that the time at which things are done is determined by the speed of change in one direction which means that time could be under our control if we all agreed which direction to take (patients, researchers, governments, regulatory agency). see the vaccine.

It doesn't matter if it's a drug or a stem transplant, or a supplement, or a vaccine. there will be a cure soon.

If we all wanted this "reality", it would "come real".

Hi Gymbag, now I'm going to have lunch, and in my reality, Genoese pesto is particularly tasty in this season and helps me overcome the boredom of certain readings in the recent replies to your post.

/

/

/

Quote from “Levodopa: the story so far by Alison Abbott “

”At the 1960 Ciba Foundation Symposium on Adrenergic Mechanisms in London, Carlsson presented a paper proposing dopamine as a neurotransmitter and implicating it in Parkinson's disease. He was shocked by the reception. His concepts were wholeheartedly rejected by a traditional community used to measuring the activity of neurotransmitters with biological assays. Chemical assays with Carlsson's spectrophotofluorimeter did not impress them.”

nature.com/articles/466S6a

these are the same ones who come to tell us today that even if the cure were discovered it would take 10 years to approve it, but this does not apply to the vaccine.

They defend their monopoly, while saying that they are working in the patient's interest.

Here we call it betrayal.

this is also reality, or not?



Spaghetti al pesto alla genovese.
SilentEchoes profile image
SilentEchoes in reply to Gioc

Your lunch looks delicious, sadly I can't eat parmesan cheese anymore. It has naturally occurring glutamate and has uncomfortable digestive consequences.

I think you might like this article on the artificial formation of consensus. It's written in the context of C19, but applies equally to neurodegenerative disease. Follow the money. flccc.substack.com/p/the-ar...

SE

Gioc profile image
Gioc in reply to SilentEchoes

SE, Here it's not about eating, but about tasting a masterpiece.

A little parmesan doesn't hurt and the Genoese pesto is made with my fresh basil, pine nuts, olive oil , parmigiano reggiano and garlic,

A culinary work of art of shocking simplicity.

Here is a recipe in a video that presents the type of agriculture I like, without glisophate.😜

youtu.be/puahv-VWhkc?si=IjR...

My Small leaf basil. My secret.😁😁😁
SilentEchoes profile image
SilentEchoes in reply to Gioc

You can cook for me any day!!

D34iPD profile image
D34iPD

No research is wasted. Failures narrow down the possible causes and potential interventions. There is however one big clue to the cause of age-related (ie non-genetic) sporadic PD. It is absent or nearly so in the >65 years rural-dwelling Maasai and Hadzabe living near the equator. They get year-round sunshine and hence a steady supply of the 'sunshine vitamin' D3. Their serum level of 25(OH)D is around 3-fold higher than in the west. These rural populations are regarded by D3 experts as having the physiological level of D3. I have been taking 4000 IU per day of D3 for six years since diagnosis and have a serum 25(OH)D of 125 nmol/L. More here: mdpi.com/2072-6643/12/7/2097 All bar one of the RCTs for D3 supplements failed to recognise that physiological level. Explaining failures is an important aspect of research.

park_bear profile image
park_bear in reply to D34iPD

The linked article does not mention rate of Parkinson's in this population

D34iPD profile image
D34iPD in reply to park_bear

See section by Marieke Dekker; nature.com/articles/s41531-...

She thinks absence of pesticides explains low incidence. But she has missed sunlight exposure and D3.

park_bear profile image
park_bear in reply to D34iPD

Some pesticides do cause Parkinson's and there is even litigation going on as a result. See: healthunlocked.com/cure-par...

D34iPD profile image
D34iPD in reply to park_bear

Yes. But D3 regulates hundreds of genes, and by physiological criteria most of the global population are deficient. So my personal approach focuses upon D3. The explanatory power of D3 deficiency far exceeds the pesticide story.

park_bear profile image
park_bear in reply to D34iPD

I've been supplementing vitamin D at 5,000 units daily since before my Parkinson's diagnosis. Has not cured me, nor, evidently you.

There are plenty of animal models showing Parkinson's can be caused by toxins including certain pesticides. Human studies regarding vitamin D are conflicting or equivocal:

tandfonline.com/doi/full/10...

"No Vitamin D Deficiency in Patients with Parkinson’s Disease"

link.springer.com/article/1...

"In conclusion, VD deficiency is associated with increased PD risk, but VD supplementation in well-established PD plays little role."

mdpi.com/2072-6643/14/6/1220

" very little evidence exists regarding the possibility to use vitamin D supplementation to reduce clinical manifestations and disability in patients with PD. "

content.iospress.com/articl...

"one interventional study suggested that vitamin D supplementation can prevent worsening"

So it doesn't hurt but it is not a cure. Explanatory power: poor.

D34iPD profile image
D34iPD in reply to park_bear

It is unlikely that disease progression stops upon diagnosis. If we accept low D3 status is involved in risk and etiology it makes sense to supplement despite the highly limited links you cite. Nothing will 'cure' the loss of a large percentage of SN neurones, even putative transplants. D3 is by far the best bet for slowing progression. It is a super-promoter for anti-oxidants, calcium regulation, serotonin, innate immunity, anti-inflammation and so forth. It is also important to suppress inflammatory conditions such as psoriasis that release pro-inflammatory cytokines that access the brain. Magnesium supplements are worth consdering. And I supplement with K2MK4MK7. I'll get back in another seven years to let you know it has worked.

D34iPD profile image
D34iPD in reply to park_bear

Beware of taking those linked articles at face value. The UK has the lowest definition of 'D3 deficiency' in europe and USA-Canada. SACN advises a supplement of just 400IU per day. I have yet to hear of a D3 researcher who personally takes less than 4000 IU daily with a target serum level of 100-150nmol/L 25(OH)D. If papers fail to recognise this physiological definition of D3 status they can be ignored.

park_bear profile image
park_bear in reply to D34iPD

Actually, the association of low D3 with Parkinson's is almost certainly due to the Parkinson's rather than the other way around. Parkinson's patients spend less time out in the sun. That is true for me and I love being outdoors and am frequently.

Associations are not causation and this is not the first time someone has been misled by this issue. Over a dozen studies have demonstrated low uric acid associated with Parkinson's. A bunch of investigators who should have known better who took the foolhardy step of raising Parkinson's patients uric acid. The result was a disaster - they got worse and the trial was halted for futility. Details here: healthunlocked.com/cure-par...

At least in this case nothing wrong with supplementing D3.

SilentEchoes profile image
SilentEchoes in reply to D34iPD

If you're deficient in antioxidants you are more vulnerable to pesticides. It isn't one or the other. Toxin exposure creates nutritional deficiency.

D34iPD profile image
D34iPD in reply to SilentEchoes

Vitamin D3 is a super-promoter for nrf2 which promotes genes for the glutathione pathways, the most important anti-oxidant mechanism. Around 95% of UK population does not have physiological D3 status and it can be argued that vulnerability to redox-cycling herbicides such as paraquat results from low D3, especially in that section of the population with low responsivity to D3.

SilentEchoes profile image
SilentEchoes in reply to D34iPD

See my comments.

Boomercd profile image
Boomercd

It must be sad and dark to live like that. I personally believe that although we are not much closer to knowing the cause or cure than we were at the beginning of research, I believe, where there is life there is hope and maybe not in my lifetime but they will find the cause and they will find a cure. I choose to stay positive. I choose to have hope. That my friend does not make me delusional.

Dabaa profile image
Dabaa

The entire medical enterprise is a racket. Gymsack speak truth; Big Pharma with forked tongue.

Gymsack profile image
Gymsack

Well that worked well. A very good response rate and reactions much as expected . Some acting as examples of what I was talking about and some mis-interpretations , but that is my fault, in that my post was not concise.

I will try point form.

* Hope is absolutly necessary and is itself beneficial and with out it every thing stops. Laughter runs a close second.

* What we can and should do in this forum is share our experiences and help others prepare for what lies ahead and share what has helped us.

* We are at a point where we know with some certanty that Parkinsons organizations , Pharmasuitical companies and The FDA are of no help to us and do not intend to be. This was shown with clarity when the development of the vibrating glove received a demand for a long period of testing instead of assistance .

* Parkinsons is most likely a group of similar diseaces with differant causes and symptoms . It is as if we are all talking about Bears and people in the north think Polar Bear and in the west Grizzley, Panda in China and Asiatic black and do not realize that it is not the same.

* What I protest are the endless reports of studies that have the nerve to put the word scientific in their report that accomplish nothing more than dilute the quality of information on this forum and the amount of money available for actual improvement. The members who are convinced that their Parkinsons is caused by a specific source or lack of a specific and only that do not need any further proof but the rest of us do.

PS: obviously "reality " was the wrong word to use

mk2002wi profile image
mk2002wi

Maybe there is a cause for PD, it makes sense and there's information on the NIH website. ncbi.nlm.nih.gov/pmc/articl...

I know that for me, my gut biome has been disrupted many times due to antibiotics use for urinary tract infections. Never has any doctor talked about rebuilding my gut biology after antibiotics.

Then there are diet issues, like gluten, that disrupt nutrient absorption.

A lot more could be said here, but I would like to hear from this group.

Gymsack profile image
Gymsack

I had an infection in my leg that would not heal and was getting worse fast. I used an antibiotic pump for several weeks and finally ended up in Emergency at the hospital in big trouble. Luckily there is an incredible doctor in this city who handles such cases. He put me on an intravenous mixture of several antibiotics that he called the soup and then he operated on several places on my leg to make sure that the infection had not reached the bone and I received the soup for a few more weeks and then other antibiotics followed with nurses coming to our home for a couple months before it all heeled .

During all this time I had zero PD symptoms. A complete remission and I also had a lot of problems with my digestive system, gas ,pain, cramps and diarea and constipation both at the same time. My family doctor GP said that, we had killed most of the bacteria in my gut and it would take some time to grow back . I then asked if the bacteria that was now gone could have caused my PD since my PD symptoms were now also non existent.

He replied that there is normally a bacteria in the gut that breaks down Dopamine and that when my gut bacteria came back so would the PD and he was right and I resumed taking L/C a few weeks later.

WinnieThePoo profile image
WinnieThePoo in reply to Gymsack

It's a nice story. It illustrates perfectly how a rational coherent story can suggest a rational potential solution - that just doesn't work.If I understand correctly it is saying there is a bacteria in your gut which eats dopamine. When it is gone your gut has plenty of dopamine and so with all that dopamine available you don't have PD symptoms. And when the bacteria comes back, it eats all the dopamine and your PD symptoms return.

The problem is

PD symptoms are due to lack of dopamine in the brain not the gut, and dopamine can't cross the blood-brain barrier

Esperanto profile image
Esperanto in reply to Gymsack

Your doctor's statement seems to me as WTP says not correct. But that does not alter the fact that because of the antibiotic (which?) a cleaning has taken place in your intestinal flora that may have removed harmful bacteria for PD. Antibiotics like minocycline easily penetrates the blood brain barrier. Minocycline possesses anti-inflammatory, immunomodulatory, and anti-apoptotic properties, thereby supporting its use in treating neurological disorders as several studies have shown.

But other factors may have played a role during your stay in the hospital, such as sleep, care, attention, anti-stress, etc. Do you have an idea yourself?

Gioc profile image
Gioc in reply to Esperanto

the point here I think is if the intestinal biome can influence levodopa absorption and therefore influence cerebral absorption. Look below my reply.

Esperanto profile image
Esperanto in reply to Esperanto

On the parkinson weekend in Nijmegen, neurologist Bas Bloem told that he has had similar experiences with antibiotics in several patients. Indeed, he thinks that the improvement is probably due to the great cleaning of the intestines, which makes the absorption of the C/L function better again. They have decided to do further research on this.

Gioc profile image
Gioc in reply to Esperanto

reactions to C/L in the context of the small intestine biome are more complex than we might *think*.

nature.com/articles/s41467-...

Esperanto profile image
Esperanto in reply to Gioc

The presence of the bacterial tyrosine kinase enzyme may indeed explain why some Parkinson's patients need to take more levodopa. I was just reading the Dutch version of the research! But cleaning can also ensure that the intestines function better at all. Bas Bloem said that in an intestinal operation of a PD patient after a mandatory 24-hour fast, the surgeon called him why that had not happened. He found some very blue sinemet pills... PD treatment is increasingly similar to cleaning up clutter in our environment and in our bodies.

WinnieThePoo profile image
WinnieThePoo in reply to Esperanto

I think it may have been semantics and Chinese whispers. A dopamine eating bacteria would have no effect on PD symptoms in the brain. But a levadopa eating bacteria, that is one that converts levadopa to dopamine in the gut, would influence PD symptoms, because the goal is to get the levadopa past the BBB intact and not let it be converted into dopamine until it has crossed the BBB. Note, carbidopa is of no use here on the Poo side of the intestinal wall. Carbidopa inhibits decarboxylation in the peripheral blood stream. Levadopa converted to dopamine by bacteria in the gut, is wasted levadopa and lost dopamine

Gioc profile image
Gioc in reply to Gymsack

Levodopa (L-DOPA) is a widely used medication in the treatment of Parkinson's disease symptoms. There are several studies that have explored the relationship between levodopa and the gut microbiome, which is the complex ecosystem of bacteria living in our intestines.

A study published in 2017 in the journal Cell found that levodopa can affect the composition of the gut microbiome. The authors observed that treatment with levodopa led to a decrease in some beneficial bacteria in the gastrointestinal tract, such as those belonging to the Lactobacillus genus. This study suggests that levodopa may have effects on the gut microbiome, which in turn could influence the treatment response in Parkinson's disease.

Another study published in 2019 in the journal Nature Communications explored the role of the gut microbiome in converting levodopa into dopamine, the neurotransmitter lacking in the brains of Parkinson's patients. The authors found that the presence of specific bacteria in the gut microbiome can influence the effectiveness of the conversion of levodopa into dopamine. This suggests that the composition of the gut microbiome may influence the response to levodopa treatment in Parkinson's disease.

In summary, these studies suggest that there is a relationship between levodopa and the gut microbiome in Parkinson's disease. However, it is important to note that further research is needed to fully understand the complexity of this interaction and its impact on levodopa therapy in Parkinson's disease.

*edited to add link

nature.com/articles/s41467-...

Gymsack profile image
Gymsack in reply to Gioc

I can only relate what happened . I have no idea what caused it. It was a very extensive operation and I was given a lot of antibiotics of very high potency. I was also given Morphin which turned out I was allergic to and caused some interesting episodes.

Afterwards I told my family GP that I thought the Surgeon had saved my leg, he replied that he thought that the surgeon may have saved more than that. I was very sick and I asked in hospital why I was not taking Parkinsons meds and the answer was there was a chance that it could interfere and I did not have the strength or will to argue. I was at that point just an interested observer expecting to die. I told the story because there is some kind of relationship

Gioc profile image
Gioc in reply to Gymsack

It must have been tough.!! Gymbag

Gymsack profile image
Gymsack in reply to Gioc

Well , all things in proper perspective, I was in the surgery ward about a month so I met some people in the hospital. I am alive and lucky. One man about 50 said that a few years before, he had climbed an apple tree on his farm , fell and was paralyzed from the waste down, his surgery was not successful. I learned from him how a person can be happy.

Gioc profile image
Gioc in reply to Gymsack

Ok I see you're not complaining even if you have a reason to, I assume.

You once wrote that you liked to paint, this life story of yours could be represented in a positive painting.

Art often represents life.

Here we have this subject. , that is, the pain of the body and the strength of the human being to overcome it and give a new purpose to his life and therefore, without looking at the past, to be happy.

IMO that would be a very strong painting.

Nothing to take seriously, GymBag.😀

Graciedog123 profile image
Graciedog123

It’s tough to have PD. To know you are progressing and so far, nothing seems to stop the progression. If I didn’t know Jesus Christ as my Lord and Savior, I would be seriously depressed. He gives me hope.

For this reason I bow my knees before the Father, from whom every family in heaven and on earth is named...

Eph. 3:14-15

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