Is there a link between attitudes to covi... - Cure Parkinson's

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Is there a link between attitudes to covid vaccination and the rejection of conventional medicine in the treatment of PD?

WinnieThePoo profile image

I was going to respond to one of Marc's posts about the lack of covid data in the USA with this guardian article

theguardian.com/world/2021/...

But. Marc's post vanished. That's fair enough if it was about covid and not PD. But this is about PD

It seems clear from the article that vaccine rejection has led to very significant avoidable deaths.

So the question is, are there any commonalities between vaccine rejection and the rejection of conventional medicine for the treatment of PD on this forum, and what conclusions can we draw?

119 Replies

There is a difference.Vaccine rejection seems like it has to do with feeling fear, uncertainty or distrust.

Rejection of pd meds , I think, may have a fear and doubt component, but I think it is more because it doesn't do enough good and it's probably seeking hope and alternatives.

There could be more to it. Let's hear some more ideas.

"Vaccine rejection seems like it has to do with feeling fear, uncertainty or distrust." Speak for yourself.

Do you know who makes up the largest percentage of the unvaxxed group? PhD's, that's right - people who are exceptionally well informed and versed in risk/benefit analysis.

I believe a large percentage of the vaxxed group did it out of fear and uncertainty.

Same applies to pharmaceuticals. Once you're woke you don't go back.

SE

*Update youtu.be/XGqH1L6E_fY

That is fascinating. Can you please tell me where you got that information about PhDs being the largest percentage of the unvaxxed group? I never heard that . In fact, every PhD that I know as well as every MD, and I work with and am close friends with a lot of them, (probably about a hundred) are all pro vax.

Never mind, I quickly found the article and I am reading it now. It's a paper out of Carnegie Mellon university.So far i see, . "Almost half of vaccine hesitant respondents reported fear of side effects and not trusting the COVID-19 vaccine; over one-third reported not trusting the government, not needing the vaccine, and waiting to see if safe. "

unherd.com/thepost/the-most...

This is what I found with a quick Google search . There is a link to download the paper.

medrxiv.org/content/10.1101...

Link to the paper

If that is the source that SE used, having a PhD was cherry picked from host of other factors:

"independent hesitancy risk factors included younger age, non-Asian race, having a PhD or ≤high school education, living in a rural county, living in a county with higher 2020 Trump support, lack of worry about COVID-19, working outside the home, never intentionally avoiding contact with others, and no past-year flu vaccine."

Not my source.

SE

Trouble is. In 3 months of "waiting to see if its safe" 100000 Americans died.

Just so we're clear this is avoidable, the total covid deaths in China with a population 5 times the size of the USA is 4636 that's over a 2 year period.

There is clear evidence as the guardian article I quoted states, that vaccination reduces deaths by a massive amount.

That ability to deny science is evident in the attitudes of some in the PD community

Another comparison, Florida versus Australia:

youtu.be/i1GmUu3c28Y?t=331

NEWSFLASH: The ability to parrot the demonstrably outdated hyperventilations of your favorite MSM outlets (and even throw in a few farcical CCP stats from the mainland as if that will boost your credibility) just highlights yet again the fervent ramblings of the consulate shill.

BTW: Vaccine efficacy numbers (the "science" you allude to) pertains only to the original variant - NOT to delta and others as they emerge.

nejm.org/doi/full/10.1056/n...

You apparently failed to read the study(?): “The effectiveness of the BNT162b2 and ChAdOx1 nCoV-19 vaccines against this variant has been unclear.” Or in other words, no protection demonstrated..

“Two things are infinite: the universe and human stupidity; and I'm not sure about the universe.” Albert Einstein

"the results were similar for both vaccines. With the BNT162b2 vaccine, the effectiveness of two doses was 93.7% (95% CI, 91.6 to 95.3) among persons with the alpha variant and 88.0% (95% CI, 85.3 to 90.1) among those with the delta variant. With the ChAdOx1 nCoV-19 vaccine, the effectiveness of two doses was 74.5% (95% CI, 68.4 to 79.4) among persons with the alpha variant and 67.0% (95% CI, 61.3 to 71.8) among those with the delta variant."

Conclusions

Only modest differences in vaccine effectiveness were noted with the delta variant as compared with the alpha variant after the receipt of two vaccine doses. Absolute differences in vaccine effectiveness were more marked after the receipt of the first dose. This finding would support efforts to maximize vaccine uptake with two doses among vulnerable populations. (Funded by Public Health England.)

Which words you struggling with poppet? Let Uncle Winnie help you

Please.... do not beleive anything you read about China and Covid.

It was a PhD testifying in the state of Michigan opposing mandates. I'll see if I can find the video.

Hikoi profile image
Hikoi in reply to SilentEchoes

You posted it earlier. She is less than impressive for a non USA person. And she still believes the old bogey MMR and autism. Really!

WinnieThePoo asked a fair question, although I think they are seeking validation of their personal opinion. "Is there a link between attitudes to covid vaccination and the rejection of conventional medicine in the treatment of PD?"

Bassofspades says: I think (people who reject PD drugs) it's more because it doesn't do enough good.

My answer to WinnieThePoo is yes, for the reason bassofspades lists. There is a legitimate question of efficacy and risk of harm/side effects from pharmaceutical drugs.

My reasonable answer is - this is why:

Up to 40% of US citizens have cross immunity to SARS-COV2 from prior influenza and coronavirus infections pre-2019.

People who develop immunity through natural infection have a broad range of antibodies as opposed to the singular spike protein in the pharmaceutical drug, the shot is unnecessary. Vaccine injury is 100% preventable, SARS-COV-2 is not absent natural immunity.

I suspect that I and my family have pre-existing natural immunity via prior influenza and coronavirus infections. Through all of this we haven't gotten sick. We aren't living in fear or a bubble and traveled to NJ and FL by airplane 9/2020 for medical appointments during the height of the pandemic and then went to CO in 10/2020. I flew to Texas in Jan. 2021 also to see medical specialists.

We live in a region of the country with some of the lowest compliance rates in the US. We take a common sense approach, wash your hands with SOAP (the old fashioned kind not a liquid surfactant) and practice good hygiene. If you're sick stay home.

My kids are back to college and my husband is back at work. We live our life. How do you explain why we haven't gotten sick? I don't believe in luck - good or bad. There is a reasonable explanation, it's called natural immunity.

Why aren't people being tested for antibodies before being offered and now forced to accept a medical procedure that carries risk of injury and death? I did this for my dog. I insisted the vet check titers for distemper at an outside lab before being boostered. Our pup has durable immunity for years, maybe a lifetime. It didn't deter the vet from trying to pursuede me and then try to scare me into giving my puppy an unnecessary procedure.

I am confident in my decision and I'm so sick of the media propaganda that I just tune it out. Once you've lost your audience it's hard to win them back. It's insulting to my (and others) intelligence to suggest that I'm operating from a position of fear and mistrust of the vaccine and the government.

The only true statement that applies to me is that I don't need the shot, and just like I did for my puppy, I practice the precautionary principal.

IF anyone in my family gets sick I have what I need for the FLCCC protocol. When people are empowered they're less fearful. I have a family member who died and another who was intubated and survived, but with long term complications. I've seen it IRL and I live it.

A graphic video of a patient with Covid pneumonia dying from respiratory failure is being circulated on FB. People with ALS ultimately suffer the same fate. It's unconscionable for a doctor to promote propaganda and fearmongering like this. I hope they and the nurse who took the video lose their license.

m.facebook.com/story.php?st...

I have ALS. I've been told point blank that I will only receive palliative care. If I go into the hospital I will be black tagged. I make my own decisions, this is exactly why I won't get the jab.

SE

google.com/url?sa=t&source=...

Gosh! I'm sorry to hear that you have ALS. Do you have Parkinson's too?

Diagnosed with Parkinsonism Jan 2018 - ALS (plus syndrome) Jul 2019. It's semantics, both are correct. My mom had PD.

My lord! That sucks beyond sucks! I see you say you don't believe in luck but I will wish you good luck anyway.

Prayers coming

That was a long one, but I thank you for a proper response to an important question, for PD as much as Covid. Rather than try to match the length of your reply, I would note that your points about immunity, and alternative solutions (basically, I know how to treat it if I get ill) are untested. They are faith. And for a lot of people - the time they test them is when its too late and they find themselves in the next slice of avoidable deaths.

This is relevant to PD research too. If we look in the wrong place we won't find an effective solution.

The commonality here is a rejection of "them" - those people who study and understand a subject who we call experts. It has become fashionable to question their competence or honesty. Thousands of medical experts globally are either conspiring to deceive us, or collectively in a coordinated fashion doing so out of their ignorance or stupidity

The man who read something on the web somewhere knows much better. To quote the experts from the article I linked

"With a slight majority of the population fully vaccinated, the Covid death rate has significantly decreased compared with the death rate during previous surges of the virus, when the vaccine was unavailable. Following the surge in cases seen last winter, 100,000 people died in a 34-day period between January and February. Comparatively, it took over three months for the US to see another 100,000 deaths this summer.

Public health experts attribute the slowed death rate to the effectiveness of the vaccine but say that the milestone could have been avoided altogether with a higher vaccination rate."

And again

"A study from the Centers for Disease Control and Prevention (CDC) published last month found that after the Delta variant became the most common variant in the US over the summer, unvaccinated Americans were 10 times more likely to be hospitalised and die because of the virus compared with vaccinated Americans."

- although if you read the linked study, it makes the point Marc's post was making, that inadequate data in the US means these are assumptions.

Despe profile image
Despe in reply to SilentEchoes

You sure echoed my beliefs! I didn't need COVID-19 precautionary methods to wash my hands and maintain good hygiene standards.

Really, when American people were coerced and mandated to receive a "vaccine"? That alone should cause skepticism about COVID-19 vaccines. . .

Why my health insurance would offer me a BONUS for having this "vaccine"???? Never being offered a bonus to have any vaccine, ever in the past.

In any event, my mother died due to flu shots side effects and my sister almost died when she had the same flu shot--her lymph nodes got swollen badly! She was allergic to it and I almost lost her, too.

I never had any vaccines except the chicken pox when I was a little girl. I had pneumonia and bronchitis and flu several times throughout my life. Nothing extraordinary to report other than I got over all of them with antibiotics and aspirin. . .

Are there any steps we can take even when we get sick with COVID before we are rushed to the hospital???? I now hear that there is a pill for that. . .

SilentEchoes profile image
SilentEchoes in reply to Despe

Look up the FLCCC protocol.

Be well,

SE

Despe profile image
Despe in reply to SilentEchoes

Thanks, SE. Question was rhetorical. IVERMECTIN, etc. etc. Yes, FLCCC. . . I am aware. . . in my bookmarks.

SilentEchoes profile image
SilentEchoes in reply to Despe

Lol, went right over my head!

WinnieThePoo profile image
WinnieThePoo in reply to Despe

Conspiracy theories about ivermectin and hydroxychloroquineA conspiracy theory going around at the moment is that India began treating people en masse with hydroxychloroquine or ivermectin and that was responsible for the fall in cases and deaths.

AAP fact checked the claim and found it was baseless.

"There is no evidence that new guidance on the use of ivermectin and hydroxychloroquine led to a reduction in COVID-19 cases in India," they found.

"In fact, hydroxychloroquine was reported to be in widespread use well prior to the country's second-wave outbreak."

Experts — including the ivermectin's manufacturers — have repeatedly said there was no evidence the drugs were effective in treating COVID-19.

Honestly - if it's only reported on a crackpot conspiracy theory site, if you can't find it on The Washington Post, The Times, or other responsible real news sites, then its loonies making up stuff

Despe profile image
Despe in reply to WinnieThePoo

Got it, Winnie. You are politically correct!!

bita94 profile image
bita94 in reply to SilentEchoes

Felicitari!

Why are PHD's any better informed on the subject than anyone else? they have the intelligence to pursue an academic qualification in a narrow field. That doesn't make them any more informed than most intelligent people. My friends with PHd's happen to all be double vaccinated - but that is of no use or relevance to the debate about why a society has such a significant proportion of its population unvaccinated that it lets 100000 people die in 3 months.

I get it now, your buddy got censored so you reframed the question. People who do this are Trolls. You get no more of my time.

SE

I'll endeavour to bear this loss with fortitude

I'm afraid of the side effects of both. I had an aniflactic reaction to a drug in 1993.i was hospitalized for 5days. I had a reaction to macrodantin,penicillin, Bactrim, cortisone and prednisone. I'm diagnosed with Parkinsonism and on no meds. I'm scared of the side effects versus the benefits. I don't know if my tremors and right side weakness are pd or a combination of several things. So I am seeing several specialist and going through testing, PT/OT. I know I'm walking on thin ice. I never had any meds or vaccine since 1993 and have been relatively healthy until 2017 when I was diagnosed with Parkinsonism. Appreciate your thoughts and advice. Thanks in advance. I took care of my hu sband for 33 days with covid and did not get it 3 weeks ago I was exposed to my son in law who tested positive and his wife and kids got it. They were fully vaccinated. So I guess I am on borrowed time. I'm afraid the vaccine will exacerbate the Parkinsonism issues.

You may have had it and been asymptomatic. You could get tested for antibodies to see if that was the case.

You're not on borrowed time. You likely have cross immunity. Please see my answer to bassofspades in this thread for an explanation.

SE

Thanks

kevowpd profile image
kevowpd in reply to Smittybear7

How many people have to re-assure you regarding the safety and efficacy of PD meds before you feel comfortable trying them? It seems like every couple of days for quite some time now you've been asking people here how to treat your suspected PD, and the answer is always the same.

SilentEchoes profile image
SilentEchoes in reply to kevowpd

Wow, that's pretty harsh.

First do no harm. Smittybear7 has already demonstrated sensitivity to some drugs (and how is this different from food sensitivity) it's best to apply the precautionary principal.

I've been where Smittybear7 is. It's very difficult to stand in the gap and not knowing for me was worse in many ways.

People come here for support and historically this is a kind, compassionate, welcoming, and supportive group who allows me to hang around, offer my opinion and give advice.

There is an army of researchers available to you too, show some grace to your fellow humans.

Peace.

SE

kevowpd profile image
kevowpd in reply to SilentEchoes

I've seen enough people damaged by levodopa phobia in my time to know when someone needs to be talked out of it. Your 'do no harm' argument can be just as easily used to argue against medication fear mongering, an art you appear well versed in.

A PwP's most precious commodity is time. Every day sacrificed to unwarranted fear of treatment is a day you never get back.

And for the record, she is already taking small amounts of levodopa in her mucuna supplement. It's quite unlikely she will have a significant adverse reaction to conventional PD meds.

SilentEchoes profile image
SilentEchoes in reply to kevowpd

Zebra, a few years back, when I thought my ALS was MSA (atypical PD with a lot of the same symptoms, not responsive to LD/CD) I did a deep dive on levodopa.

My mom had PD for 25 years before she died in 2019, and tried everything the pharmco-medical complex had to offer her. She participated in a clinical trial where stem cells were injected into her brain - she lost the ability to speak for 2 weeks, she regreted her decision.

Eventually sinemet wasn't controlling her symptoms and she had DBS surgery, it gave my mom her life back for a while but she was developing Lewy body dementia. A switch to Rytary seem to help for a while. Her dementia became advanced and she developed hallucinations. It was distressing for her husband and my mom was given quetiapine, this caused her to have TIAs. Her care was mismanaged by hospice.

My deep dive revealed concerns that levodopa caused dementia. When I raised the alarm on this forum people became very upset - with me. I'm only the messenger folks.

You have the right to choose your treatment, but would you make the same choice if you knew the tradeoff is dementia?

About 50% of people with ALS have mild cognitive impairment - I'm one of them. Some progress to frontotemporal dementia. I don't know who I am without my intellect. This and the knowledge that with central apnea I may stop breathing and never wake up, really burdens my heart. For a long time I couldn't fall asleep until I was completely exhausted. I have developed myoclonic seizures and cerebellar ataxia. I fell and shattered my ankle last Feb. had surgery and was immobile for 3 months. I got PT and am walking again but it was a struggle and I'm not back to my baseline.

What I've got is fugly, but my progression has been relatively slow. Don't lecture me about time, I am well aware of how precious it is. Maybe you can appreciate how good you've got it. There are drugs to alleviate your symptoms - for a while. I'm not in this to manage symptoms - I'm in it to recover. Pharmaceutical drugs won't cure you or me.

Canary

kevowpd profile image
kevowpd in reply to SilentEchoes

Sorry, but there's no evidence that levodopa causes dementia. That is unwarranted fearmongering. Your mother got PDD/LBD because its seen after 20 years in almost all cases of PD (levodopa use or not). Using the term 'deep dive' does not make you appear educated, either.

As for your 'advice', I don't care for it in any way, shape or form. And until you have a better advisory framework than 'clean up your lifestyle and follow the wahl protocol', you shouldn't be 'advising' anyone on here about how they can 'recover'.

"I'm not in this to manage symptoms"

You aren't "in it" at all. You have a different condition.

As for not wanting to be lectured, perhaps take your own advice.

You are bringing up very important concern regarding Levodopa (LD) and dementia, since LD can raise levels of homocysteine which (if elevated) can be linked to coronary artery disease, stroke, and dementia. All of us should be monitoring levels of homocysteine.frontiersin.org/articles/10...

Despe profile image
Despe in reply to SilentEchoes

"People come here for support and historically this is a kind, compassionate, welcoming, and supportive group who allows me to hang around, offer my opinion and give advice."

There are always exceptions to the rule, SE. :(

Smittybear7 profile image
Smittybear7 in reply to kevowpd

I'm just looking for help.

kevowpd profile image
kevowpd in reply to Smittybear7

And you've been given plenty of it. You can keep asking the same questions about levodopa. The answers aren't going to change.

‘Avoid loud and aggressive persons; they are vexatious to the spirit.’

It sounds like kevowpd is having another crappy day. Please don’t take his aggressiveness to heart. We all have enough to worry about.

kevowpd profile image
kevowpd in reply to Jennyjenny2

I, and others, have politely attempted to answer smitty's levodopa questions on a number of occasions. She has trialled pretty much everything else to treat her parikinsonism. One has to wonder what it will actually take for her to take a short course of the gold standard PD treatment.

But it makes absolutely no difference to my day to day life whether her parkinsonism is adequately treated or not. It may, however, make a significant difference to hers.

Thanks

rescuema profile image
rescuema in reply to Smittybear7

Read the section on Levodopa. SilentEchoes is correct in her assessment of l-dopa, especially pertaining to potential B deficiencies, high homocysteine, and oxidative damage. While the drug help manages the symptom to improve QOL, you must be careful to counter its adverse side effects that will creep up in time. lifeextension.com/protocols...

Despe profile image
Despe in reply to rescuema

One of the most informative article! PD in a nutshell.

Thank you, Rescuema! Visit more often. :)

If I may ask you, what are your thoughts on someone taking all three forms of Vitamin B3?

rescuema profile image
rescuema in reply to Despe

The article was recently posted by Marc and I'm reposting it for people who missed it since it's quite comprehensive and informative. While some shills want to ignore the obvious facts and potential side effects no matter how many times we've hotly discussed the topics on this forum, you're much better off choosing to be more informed/prepared rather than turn a blind eye.

As to B3, all PWP on carbidopa should be wary of potential B3 deficiency and should benefit from supplementation. frontiersin.org/articles/10...

However, one must be cognizant that high B3 supplementation will deplete methyl donors and inadvertently raise the homocysteine that PWP must avoid, and possibly increase the potential for developing diabetes if not careful with NA. NR tends to place less burden on the methyl pool but you'd still benefit from supplementing TMG to avoid complications since it still gets broken down to nicotinamide (see below). Test homocysteine level regularly and I'd say you may be better off cycling/tracking than overdoing it with all three forms at once but this can be very individual dependent on a person, as some are naturally overmethylated and benefit from larger doses of B3 than others.

thorne.com/take-5-daily/art...

Despe profile image
Despe in reply to rescuema

Thanks again! You are a thesaurus of PD CAM!

Hubby started with NR (Tru Niagen). Stopped it for a while and started Niacin. Then I discovered N-Stac (NMN) and he started that in addition to Niacin. Stopped Niacin and he continued with NR and NMN. However, I noticed that the benefits of Niacin were more obvious than NR's and NMN's. I was thinking if he could continue with all three forms. Perhaps, he could alternate these three?

WinnieThePoo profile image
WinnieThePoo in reply to Despe

And Hubby is doing so well! But that's just his personality

rescuema profile image
rescuema in reply to Despe

The mechanisms involving sirtuins and NAD are complex so I'll send you the info through PM rather than expounding on this thread. In short, I believe NMN (for longevity) is quite hyped and one should only supplement NR or NMN if noticing tangible health benefits, but you've stated NA is superior for your husband so the choice is obvious. For PWP, taking the inexpensive Nicotinic Acid at night with an equal amount of TMG for methylation support will be of benefit and supported by studies and literature. The best of all is to exercise regularly, practice calory restriction/fasting and eat foods high in polyphenols to activate sirtuins and boost NAMPT and NAD recycling naturally.

Still trying to get my head round this B3 supplementation. Have also tried hubby on NMN, NAD & NA at various times but don't get any feedback from him - I just have to observe, so it's very difficult to make a judgement. NAD is cost prohibitive so I've kinda ruled that out for now until I see any firm evidence that it will benefit him.Rescuema, would you be kind enough to please PM me the same info you sent Despe (and also please just remind me what the acronym TMG stands for)?

Many thanks

TMG stands for Trimethylglycine. I get the pure powder form free of additives and dissolve in water with almost no taste to take with niacin. I'll PM you.

Despe profile image
Despe in reply to rescuema

TMG is also included in some supplements that hubby is taking. Is that enough or need to up dose? Thanks!

rescuema profile image
rescuema in reply to Despe

It depends on how much B3 and other methyl donors you take. For simplicity, you take about an equal amount of TMG for the B3 supplementation - you take 100mg niacin, take 100mg TMG. For NR, you take about half the amount. Best to take NA after the last meal (or early morning if IF) so that you'd be fasting for the next 6 hours or so to avoid blood sugar spikes.

Despe profile image
Despe in reply to rescuema

He is taking NA before breakfast. Guess we have to add TMG with NA.

It's kind of complicating for him as his first med right after he gets up in the morning is Thyroid med. PD med (1/2 t Sinemet) with MP at least an hour later and right after that B3, B1, and C. He then has to wait another hour or so to have breakfast. :(

Life is not easy. . .

Experience and the vast majority of the posts on this forum show that the vaccine does not exacerbate parkinson's issues. However pwp like everyone else quite frequently have short term reactions.Silent Echoes comments about immunity ignore the research which suggests that it is short term, and the consequent decision to give vaccine boosters. The Israelis have good data on this

"Silent Echoes comments about immunity ignore the research which suggests that it is short term, and the consequent decision to give vaccine boosters. The Israelis have good data on this"

The data is only as good as the source. Look up James Lyons-Weiler if you are open minded enough to consider an opposing source for your data.

SE

Thanks for sharing

Significant overlap, yes.

The nirvana fallacy.

"The vaccine isn't perfect so I won't be taking it. I'll either wait for the perfect vaccine or try these (pointless and ineffective) home remedies"

"PD meds aren't perfect (they are not a 'cure' and do have side effects) so I (or, in some cases, my partner) won't be taking them, not even in a small quantity to determine whether the drug is worth the side effects. I'll spend lots of precious time and plenty of money pursuing largely ineffective alternatives"

The same thought process applies to PD research. "We don't have the answers yet so everything to date has been a waste of time, and we should blow up our current understanding and substitute it with my own conceptual framework which involves doing [x]"

sorryantivaxxer.com/

WinnieThePoo profile image
WinnieThePoo in reply to kevowpd

Thank you. In a nutshell that is the point. I was inspired by the sticker I peeled off our local recycling bin. It had a picture of a hypodermic and (in French) "if you agree to this, your children will be our last". An internet rumour based on a confusion of 2 similarly named , but very different proteins, invites the dismissal of experts.

The real issue is this bizarre notion that the collective wisdom of the people who really understand the subject is corrupted by an evil conspiracy. I always get visions of Blofeld from SMERSH with his cat on his lap when this nonsense is earnestly promoted

There is a connection between the PD medication, covid vaccine, Trump voters and Biden voters!!? Sure it is, media (alias propaganda) says! I was reluctant to take CL for two years after being dxd; I started HDT one year after being dxd. Per overall HDT is helping 85% (everything except the tremor) , C/L between 0-10% (tremor only) and 5-15% I have tremor. I gave a chance to C/L because I could stop it any time if I had issues. The analogy between the C/L and covid vaccine is non-sense. The people who had issues with the vaccine could do nothing to reverse it. I never had a flu vaccine and I never had flu. But now I'm forced by the government to have a vaccine (it did not forced me to take C/L); if I won't do it I won't be able to travel, possibly I'll loose my job (which is no government or health care job) plus the harassment from the government employee and the pro-vax activists.

Everyone should have the right to decide what medication will take and when! I don't agree with the anti-vaxers and I don't agree with the pro-vaxers! I agree with the freedom to choose!

SilentEchoes profile image
SilentEchoes in reply to ion_ion

"I agree with the freedom to choose!" Me too

Good of you to reconsider. Your promise not to contribute to this thread was devastating

😂

First. An apology to anyone who reads this , who addressed me about something I fail to respond to. I've woken up to 22 alerts, a full email inbox (there must be a way to turn off these notifications, and other priorities. OK - man up Winnie - take a look

🥺

These threads don't help anyone. Peoples opinions have already been decided. While my opinion is 100% on your side, I feel people opinions just become even more hard-core by responding to these threads. It's fun to read people's in my opinion daft ideas that every single doctor in the world in wrong in regards levodopa but a small group of people on a little Internet forum are actually correct. Ultimately, everyone has to make their own decision and they should be listening to their doctor not some unknown on the Internet. There was a thread a few months ago on ambroxol where ppl were advising others to take massive quantities of it based off a tiny trial n people were actually listening. The Internet is a dangerous place. Doing your own research or taking a deep dive, does not make you an expert. Listen to the general consensus of the actual experts n not some cherry picked expert who disagrees with the consensus. Remember, gravity is also just a scientific theory, its not fact. But the general consensus believe its correct, and I haven't seem many people floating around lately 🤔

Logically speaking it is not sure 100% the C/L works for everybody just because most of the doctors say so. It is valid for the vaccine, too. I'm pro-science but I know from my experience that everything done in rush usually has issues in the future. I decided to have the vaccine not because I'm 100% sure it is going to help me but because I'm forced to do it. And the Stalinist slogan "who is not with us is against us" is still a norm during these times.

WinnieThePoo profile image
WinnieThePoo in reply to ion_ion

What's fascinating on this thread is that everybody interprets "conventional medical treatment" as C/L. I know its the gold standard but

My utterly conventional neuro has me on Pramipexole only at the moment

others take medication for depression, anxiety, dyskenesia relief. The issue is trust in and respect for experts in the field, not "you must take C/L"

I'm a 3rd generation levodopa user. Significant relief for me so far with no notable side effects, and I don't even need the High Dose Thiamine protocol!

You also use levodopa, so maybe you can share your own experiences? You were happy telling CCL that ldopa would make her feel "almost normal" for 10 years, so maybe you can do the same for smittybear.

Funny, you never told CCL to look at your profile.

Maybe you only help the women you have an obvious and pathetic crush on?

GioCas profile image
GioCas in reply to kevowpd

You didn't answer, once more.😂

Hikoi profile image
Hikoi in reply to GioCas

GioCas your continual questioning of kevowpd credentials to write about PD is tiresome. A cursory look at your and his posts gives ample evidence that he knows what he is talking about. Yours do not give me the same confidence.

GioCas profile image
GioCas in reply to Hikoi

sure, like here: healthunlocked.com/cure-par...

😂😂😂

With you I am in peace and love mode, but do not take advantage either. 🌻

with respect and friendship as always.

Gio

kevowpd profile image
kevowpd in reply to Hikoi

It's difficult to conceive of a less sincere offer of "respect and friendship as always" than one accompanied by the threat of future hostility should you elect to "take advantage" (whatever that means): "With you I am in peace and love mode, but do not take advantage either. "

I never knew "as always" actually meant "until you express mild disagreement with me", but there you go.

I'm sure you feel truly blessed to be on the receiving end of such "warmth".

Not sure about you, Hikoi, but I've found that those that actually treat you with warmth, respect and friendship don't ordinarily feel the need to keep mentioning how they are doing so.

Or, we could just do like Uttar Pradesh and wrap up the pandemic in a few months: rumble.com/vn8v7a-india-gov...

Very interesting! Thanks for sharing

Could the solution have been right in front of us the whole time?healthunlocked.com/api/redi...

Some of us knew it all along. We knew how sinister it was to witness effective prophylactics get politically silenced and squashed.

Below, a compelling video by an expert on why people must have the freedom to choose and never be forced to vaccinate, especially an "unsafe" vaccine.

"Dr McCullough is a world renowned authority on COVID and editor-in-chief of two major medical journals. He discusses how most deaths are due to CDC refusing to permit pre-hospital treatment, which would keep most people out of the hospital. He also discusses how the “vaccines” don’t prevent infection but do cause major problems."

beforeitsnews.com/health/20...

There are going to be some Darwin awards available

ion_ion profile image
ion_ion in reply to WinnieThePoo

This can go both ways.

Samrpd profile image
Samrpd in reply to ion_ion

Darwin Awards on whom? India that clearly benefits from effective prophylactic or US that forces vaccine mandate?

WinnieThePoo profile image
WinnieThePoo in reply to Samrpd

The USA forces the vaccine on it's people? And 40% are still unvaccinated. You're more hopeless than we give you credit for

Samrpd profile image
Samrpd in reply to WinnieThePoo

With those in power ruining this country down to the current state I’ve never witnessed before I agree that we’re in deep trouble! 🤣

WinnieThePoo profile image
WinnieThePoo in reply to Samrpd

Conspiracy theories about ivermectin and hydroxychloroquineA conspiracy theory going around at the moment is that India began treating people en masse with hydroxychloroquine or ivermectin and that was responsible for the fall in cases and deaths.

AAP fact checked the claim and found it was baseless.

"There is no evidence that new guidance on the use of ivermectin and hydroxychloroquine led to a reduction in COVID-19 cases in India," they found.

"In fact, hydroxychloroquine was reported to be in widespread use well prior to the country's second-wave outbreak."

Experts — including the ivermectin's manufacturers — have repeatedly said there was no evidence the drugs were effective in treating COVID-19.

And you and your clan (ref. In-laws) are already racking up the wins…

kevowpd profile image
kevowpd in reply to WinnieThePoo

An anti vaxxer that fearmongers about levodopa, does not have PD, is not a caregiver, has no practical experience (or theoretical experience, for that matter) in the management of PD in any capacity whatsoever, yet still goes on a PD forum to rubbish PD meds and spread anti vaccination rhetoric?

No better example of the overlap we talked about.

WinnieThePoo profile image
WinnieThePoo in reply to kevowpd

He has a warehouse full of hydroxychloroquine to shift. A mate of his panic bought it, before he realised injecting bleach was the truly dumb response.

Yes, I’ve been a fan of McCullough ever since his testimony before the Senate (find video on rumble)

👍

My goodness. Is it covid that is causing people to be angry ????

It is better to be kind than be right ????

In reading the replies. No, I haven't read the articles backing up the claims. Every doctor I have visit ( there's quite a few in my life now) have asked me about getting my covid vaccine. Everyone I've dealt with have had the vaccine. I've wondered if these polls actually ask EVERY doctor out there if they had the vaccine and why and why not? Kind of misleading I think. I took the vaccine as I work in the "health department" dealing with nutrition. Sounds like a good job? Maybe. I hand out food to low income families. I don't actually teach anything on nutrition. I just hand out healthy foods to low income families. So by saying I work in health department people automatically think nurse, doctors or etc when really my job isn't about health-care per se. We're just feeding families healthy foods.

ryzlot profile image
ryzlot in reply to Itzallgood1

What is interesting... EXCLUDED from mandate to take the jab: Members of Congress, Federal Judges and (wait for it) ALL PFIZER EMPLOYEES

JR

Itzallgood1 profile image
Itzallgood1 in reply to ryzlot

Source?

ryzlot profile image
ryzlot in reply to Itzallgood1

FDA Aug 23 documents

WinnieThePoo profile image
WinnieThePoo in reply to ryzlot

still waiting for an FDA document

Itzallgood1 profile image
Itzallgood1 in reply to ryzlot

I'm not so sure this isn't a little off. I know friends if mine that are nurses. They have not been threatened their jobs at all. I havent been threatened. I know places have said if not vaccinated that the employee has to wear a mask while working. The Afghan people that came here all have to have vaccination as that was agreement in place for them to come here. From what I've seen and what video showed aren't matching up. Not arguing but just what I'm seeing happening around me. Yes I have heard of places wanting to fire employees for not getting the vaccination but not by me as of yet.

ryzlot profile image
ryzlot in reply to Itzallgood1

Also Congress, staff, homeless, Illegals - Here you go

bitchute.com/video/RYHgsC08...

WinnieThePoo profile image
WinnieThePoo in reply to ryzlot

Can't beat an authentic quality source. I might as well post the video of my neice in her paddling pool

I repeat the question - why would you mandate Pfizer employees?

Or congressmen?

The "mandates" in France are people working in environments of risk to the public - essentially pass sanitaire establishments. Pretty obviously that excludes homeless people. And pharma firm workers, car workers, road sweepers. Why on earth would you expect to mandate them?

WinnieThePoo profile image
WinnieThePoo in reply to ryzlot

Why were Pfizer employees mandated? Were Ford employees mandated?

Smittybear7 profile image
Smittybear7 in reply to ryzlot

That's scary! Where did you get the information? I'm still not vaccinated but may get j&j sso I can be around Grandkids and family 7 family members all fully vaccinated got covid. 1 hospitalized.

faridaro profile image
faridaro in reply to Smittybear7

If you decide to get vaccinated, educate yourself on proper injection procedure (which currently is not practiced) and ask if it can be done with needle aspiration - see Dr. John Campbell's report:

youtube.com/watch?v=nBaIRm4...

By the way, he advocates for taking vaccine, except questions the procedure.

Also, here is British Medical Journal article on vaccine approval:

blogs.bmj.com/bmj/2021/08/2...

Thanks WP for a very interesting discussion. I did get the vaccine in part at least out of fear and some research that it (or just being in the hospital for a long time!) could exacerbate PD. It being stressful, just that would be a concern. Having gotten it, I felt less stress being out and about.

After, though, my viral markers for Hpv and some other viruses increased. Could it be due to the vaccine, or the stress of the previous year? Who knows? I am a bit more reticent to get the booster.

My doc did not get it. She has an autoimmune condition. MD PhD.

I think lumping people into a homogeneous group isn’t right. Both my daughter’s boyfriend’s family and a co workers daughter’s family did not get the vaccine and none of them are anywhere close to PhD. One of those families is even moving to another state without vaccine mandates. They are voluminous social media consumers. Their reasoning is the fearmongering they hear on social media.

I would guess there’s a fear component for MOST people in either getting or not getting the vaccine. And that misleading -or incomplete- information is a part of that (on both sides). The truth is we don’t know the long term effects of the vaccine and who should be excluded. My daughter is concerned about her two sons who have multiple food allergies. It’s also true that where higher percentages of people are vaccinated, many fewer die. In my opinion this “trumps” the argument

That “personal freedom” should prevail.

I’m glad that in California the school vaccine mandate includes exemptions for medical, religious or personal belief reasons. And I’m glad there is a mandate now!

Respect to all who think things through and make the best decisions they are able to for themselves and their families.

Thanks for sharing

Oh Boy. Another morning waking to lots of activity. My observations

It has (predictably) drifted into a vax anti-vax game of ping pong (discussion would imply either side listened to the other). In itself this achieves nothing, but appears to have been achieved with relatively little blood on the carpet

There is an evident link - in terms of individuals. Broadly those opposing the vaccine are those hostile to conventional medicines solutions

There is a presumption that "conventional medical solutions" means C/L. Of course C/L is the "gold standard" and likely to feature eventually in the long term treatment of genuine cases of idiopathic PD, but I had in mind "respect for experts" rather than just one drug. There is Rasagiline, Pramipexole, Amantadine...

The divide does appear , in spite of my last comment, to be respect for experts v belief in conspiracy theories

Mostly, those in the anti-vax/ dismissal of experts pool don't apparently themselves have PD and therefore aren't living with the reality of the condition most of us on this forum suffer from.

The anti-vax (dismissal of PD experts) set cite comically conspiracy theory crank websites as authoritative support for "the truth" - and as noted in the last paragraph don't have to live with the consequences of their beliefs. They are accordingly completely unfazed by 700,000 US citizens dieing of the virus (it wasn't them or anyone they know, and their untried prophylactic true solution will save them). Chances are 700,000 is going to be 1 million before there is any sign of a corner being turned in the USA.

Over a hundred replies Richard, bet you wish you never asked! 😁

I've managed to turn off email notifications, so I have a manageable inbox in the mornings. 🥳

It's notable how much off-topic soapboxing there is, but I think the question is answered. For me, the issue is simple. For both Covid and PD I want something that works, and not something which suits my belief systems. And I value and respect expertise in all fields.

What hadn't been apparent to me before asking the question, and now is, is the extent to which the anti-expert contributions were dominated by those not themselves suffering PD - and inflicting their ideologies on others. That figures - they have a political agenda and doubtless "contribute" widely .

I couldn't help noticing that whilst on here, I feel overwhelmed by earnest opposition to conventional medicine and in particular hostility to C/L, on Sunday at Marc's zoom meeting, of the 19 members who were there at the start, and all actually had PD, the only one not taking C/L (yet) - was me . 😂 And I will be booking a neuro appointment soon ...

The complete consensus was that C/L was essential for the quality of life being achieved, and nobody contemplated not using it - however much many struggled with some of its side effects. It reminded me of the launch of Sinemet, when Dad took me with him to lunchtime seminars for hospital consultants during my school holidays (and I met British Lion Ken Kennedy - a geriatrician in the days of rugby as an amateur sport). Dad showed black and white film of PD patients, before and after getting Sinemet - to open mouthed astonishment at how it could change the lives of PWP

The thread will fizzle out eventually

If you're doing well without levodopa, why would consider taking it?

Although today I am having a perfect PD free day, yesterday was a nightmare - bad tremor and real problems shivering when it wasn't that cold. Generally I have felt a bit worse recently, and have found that 120-360mg a day of levadopa from MP improves it

Maybe the neuro will suggest increasing the Pramipexole (Mirapex in the USA). I am on 1mg a day, and I think the maximum is 3.5mg

Maybe he will suggest adding Rasagiline - he suggested it when I was with him before because it might be neuroprotective(I am changing neuros back from Toulouse to Carcassonne) and I note there is a new drug trial (P2B001)now which combines the extended release version of both those drugs into one tablet

But eventually I expect C/L to end up in the mix

Oh okay. Sorry to hear that. Personally I think you should be using levodopa. You're neuro seems to be of the opinion of delaying it as long as possible by trying all the other variations. However for a lot people including me, the only drug that had any real tangible effect was levodopa. I think you've said before you've only had symptoms a few years. At that stage you should not be suffering. Use levodopa while it can bring you a really good quality of life. Practically normal. But also don't listen to me. I just a randomer on an Internet forum. 😁

I have had 2 neuros. I switched from Carcassonne (C) to Toulouse (T) for the trial and am in the process of switching back

C mentioned Rasagaline when I said I wanted to try something neuroprotective, but I meant Exanatide! - He sent me to T to find out about trials

T put me on Mirapex - which, once I got used to it, I like, cos its one pill a day and no fuss about meal times (protein absorption)

C/L may well be a good option, but if more Mirapex (or P2B001)achieves the same result with a once a day dose, and tolerable side effects, that would probably be preferred

If you can achieve a therapeutic response without levodopa then that's 100% the way to go but i would defo do a levodopa trial to compare the response against. Levodopa is an awesome drug for a short period of time. It would be awful if you missed that window

I think that's my plan. Take advice initially, but if the non-C/L route is not providing near perfect relief - ask to trial C/L

In a way that's what I've been doing with MP. My feeling is as little as 12.5/50 tds will be more than double the effective ldopa from MP - and that seems to have an effect.

As soon as I catch up a work backlog, I'll book a neuro visit

Thanks

Good question. Personally I was first in line for the vaccine. But I realize PD meds are just palative. They can do nothing to slow the progression and my doc seems resigned to that. As an early patient, I just can't give up like that after seeing all the positive research that stops because no one will pay for it.

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