Question for comment re PD patient and Co... - Cure Parkinson's

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Question for comment re PD patient and Covid Vax.

PDsux_10 profile image

My wife usually writes on this site. She does a famous job learning all about what others are doing, taking and trying. We then try on me. I love her totally for everything she is doing for me! We have been very happy with my progress so far. We have been avoiding the traditional meds and enjoying macuna and supps. I was diagnosed with PD late 2017. My regime of late has been a green tea concotion of various strengths of Macuna Levedopa taken several times a day. We had until recently, some sort of control, but I am saying here, definitely did not have total control of my various symptoms. I was happy with where we we going with control of me with non-traditional meds. July 3rd I was mandated by my government to accept a first dose of (pfizer). My employer needed me to do this to keep my employment. I did NOT want to do this, but I did. It was then mandated that I needed the second dose, again to keep my job. There were fines for both employer and me if not done( we live in Australia) I very reluctantly submitted to this medical coercion Sept 22. A short 3 weeks ago. Finally my question to the forum. Has anyone else taken the Vax with similar PD symptoms and meds? Because since 2nd dose I now have symptoms not before evident. "Severe" tremor and foot dystonia, replacing occasionally moderate. I now have dry mouth syndrome, totally not evident before and can't swallow hardly anymore. My breathing is now offen panting and labored during the start of my on time. I now have restless leg syndrome in bed causing my going to sleep to be disturbed. And I have almost totally lost control of my generally self controlled PD medication regime. Have I unwittingly progressed the demise of my PD affliction? Have I totally lost my traditional 'honeymoon ' period'? We are very scared, angry and sad. Sorry this is so long. My thoughts and best wishes to all PD sufferers and their carers.

Rodger

31 Replies

Here is a recent post on the subject. There have been several posts on it over the past months.

healthunlocked.com/cure-par...

The question gets asked regularly. Juliegrace has linked to recent replies. There will be a long list of variations on "no problems" "minor problems for a few days". A small number note differences for a longer period. So, hopefully you will get back to normal soon.

PD is a condition which both fluctuates and progresses. Chances are you caught a rising wave coincidentally with when you had the vaccine. Moreover you have an emphatically stated pre-aversion to the vaccine and placebo and psychosomatic effects are common with PD.

My Dad suffered a series of sudden changes in his Parkinsons before he died of Covid, alone in a hospital ward, just before the vaccines became available. Imagine how scared, angry and sad he was.

Despe profile image
Despe in reply to WinnieThePoo

WTP,

You wrote that your father did have the vaccine before his passing.

WinnieThePoo profile image
WinnieThePoo in reply to Despe

I didn't. Mum had her first vaccine the day Dad died. He was booked to have it the same day but didn't make it

Thank you for your positive reply. I am so sorry about your dad.

Report it!

WinnieThePoo profile image
WinnieThePoo in reply to Despe

Yes, by all means report it, but that doesn't fix anything. And as so often, your web site is a bit of a naughty tinker - since it lists adverse events and deaths which occured after the vaccine, but were not necessarily caused by it

Yesterday night I had really bad diarrhea. If I had had the vaccine prior to that it would have been reported - when it was nothing to do with the vaccine.

Even with that deliberate misrepresentation, listing deaths after receiving the vaccine , although not caused by the vaccine, the numbers are (USA only)

Deaths 6891 out of 217 million vaccinated (deaths for any reason after vaccination)

Deaths 733640 out of 45 million contracting Covid (deaths caused directly by Covid 19)

Just a perspective

Despe profile image
Despe in reply to WinnieThePoo

One death, TOO MANY!

WinnieThePoo profile image
WinnieThePoo in reply to Despe

So 733640????

Ramtops profile image
Ramtops in reply to Despe

Is an anti-vaccination propaganda allowed here? I doubt that there is any vaccine or any medicine that has not caused multiple deaths. Same goes for a lot of foods. Ban all nuts? All medicines that have caused deaths?

Despe profile image
Despe in reply to Ramtops

Newbie here? Have you been diagnosed with PD? When?

Ramtops profile image
Ramtops in reply to Despe

Yes, why does it matter?

Despe profile image
Despe in reply to Ramtops

Is vaccines mandate allowed here?

There still is not enough experience with the vax to know all or even most of its effects in PwP. At this point that doesn't really matter for you because you are now down to dealing with the aftermath of the vax for you.

You say you are on supplements, is B1 one of those supplements? If so, how much? The reason I ask is because one forum member reported that their PD symptoms noticeably declined for a short while after getting the vax. If that is what would have happened in your case, perhaps your B1 dose is now temporarily too high. A B1 dose that is too high will exacerbate existing symptoms and can even present symptoms that have previously not been seen.

Dr. Costantini was very clear on the fact that a patient that experiences worsening of symptoms brought on by a dose that is too high, could stop B1 and let symptoms return to your baseline symptoms, before resuming B1 at a reduced dose. In your case it would be at the same dose since this was likely brought on by the vax, having occured right after getting the vax. Dr. C was also clear on the fact that any worsening of symptoms experienced because of a B1 dose that was too high would go away once the dose was stopped and enough time had passed. This is just one idea to consider since relatively so little is known about the effects of the vax is known. If it doesn't help, you can just resume the B1 at your regular dose. If you have been taking B1 for over a year, it will likely take some time for the effects of B1 to wear off. In long term use of B1, Dr. Costantini said the effects of B1 could last for weeks or even a couple of months in his patients.

Good luck and please keep us posted on how you do with these after effects of the vax as I'm sure other members who have not gotten vaccinated will want to know.

Art

PDsux_10 profile image
PDsux_10 in reply to chartist

Thanks for your reply Art. All your posts are full of good information. I will post again with an update. Cheers

I was positive for Covid six months ago I got the vaccine yesterday and I feel broken today that I didn't feel like that with the virus either. No one knows the long-term side effects and its repercussions on PWPs have not been thoroughly investigated. The vaccine was implemented by governments only because they had no other choice and therefore many are the arbitraries introduced with respect to the scientific method. This often happens when you don't have time to do all the checks. Governments often find themselves making such imperfect decisions because waiting would perhaps have been worse and not in the interest of all citizens. Vaccinating those healed like me is a more obvious arbitrary (think that they wanted to convince me to do even two doses as a frail patient at risk…. Recovered from Covid). I would have preferred a position of vaccination obligation with full responsibility for any chronic adverse effects due to the vaccine rather than this cowardly barrel discharge.

However, it is easy to speak as a spectator and I would not want to be in the shoes of those who make these decisions.

Despe profile image
Despe in reply to GioCas

Gio,

You achieved natural immunity--beats any vaccine!

Ramtops profile image
Ramtops in reply to Despe

Nonsense. See hub.jhu.edu/2021/09/10/infe... and nhrmc.org/blog/2021/09/why-...

Despe profile image
Despe in reply to Ramtops

:) :)

GioCas profile image
GioCas in reply to Ramtops

:-) :-)

windhorsepixy profile image
windhorsepixy in reply to GioCas

No one knows the “long-term side effects & it’s repercussions on PWP “ - or ANYone else - of having COVID - (symptomatic OR not) - either. My hwp had meningitis 20 years ago & nearly died. Six years ago diagnosed w/ PD. I know the meningitis contributed to his developing PD. We rarely get a choice in this regard - but COVID is not my choice of a way to die. To each his own.

GioCas profile image
GioCas in reply to windhorsepixy

Hi windhorsepixy,

I fully understand your point of view and I am very sorry for your husband; there will soon be a positive turnaround in these neurdegenerative diseases and we must be in the best possible condition. This is a chaotic world where diseases hit us randomly, they don't choose us. If you are alive, you can catch a disease. I was cautious, but I caught the virus and recovered, I took a dose of pfizer vaccine because without it I could not go to work and I have had PD for quite a while, but I had to sign a “informed consent” that does not protect me in case of side effects. I could die tomorrow of something else, but death does not contain a problem for those who have died. My problem concerns life and it is that Parkinson's sometimes makes my life boring, the virus and rulers also ... maybe few will understand me here, but boredom and sadness are worse than illness and who would want a world of apathetic people because they are more obedient they are not my friends. Today I feel better.

Greeting from Italy Gio :-)

PDsux_10 profile image
PDsux_10 in reply to GioCas

Thank you for your comments. Do keep well.

I am sorry so hear that after all the care you have taken to stay well. Pre PD medication my husband had two doses of Pfizer and felt mentally relieved as did many of us ! You have made me think now because since then his walking has badly deteriorated and he cannot get his balance. He has fallen over 4 times. For the last three weeks he has been on 3 low doses of Madopar a day with no improvement as yet. Good luck x

PDsux_10 profile image
PDsux_10 in reply to Gwynant

Thank you for your comment. I am sorry to hear about your husband. Let's all hope our changing conditions are just this PD and not adverse reactions to vax. Good luck to you too.

Hi Rodger

Was the Macuna levodopa taken in pill form or another way did it help lessen the tremor and what was the dose

Regards Angus

PDsux_10 profile image
PDsux_10 in reply to Angus60

Hi Angus. Over the last 4 years I have tried pill, capsules and powder form macuna of various % levedopa. I am still experimenting much to my Neuro's frustration. I would not be confident to advise you here of any dose that I have found that consistently works for me. I have moments of comfort and am thankful for that when it happens. Cheers

I’m so sorry to hear this. It is hard to believe that so many are forced to take a vaccine when there is no information on the long term consequences and information about the short term adverse reactions are being censored. I wish I had information to share with you and maybe some day we will know more. I just want to tell you that I will keep you in my prayers and hope that you return to your more normal self soon.

PDsux_10 profile image
PDsux_10 in reply to Roadtrip20

Thank you for your best wishes. Much appreciated.

My husband had 2 doses of Pfizer and still continues to feel better than he has for many years. It made him a bit tired for a day and a sore arm but now back to pre vaccine norm. I don’t have PD and the second jab wiped me out for a day but no long term adverse effect.

PDsux_10 profile image
PDsux_10 in reply to LAJ12345

Thanks for your reply. Very happy it was a positive experience for you both. Cheers

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