I know Covid has been discussed on here before, but I’m interested in people’s opinions on this. My very first post after being diagnosed received lots of comments from people who, like me, believe their PD was triggered (or worsened) by Covid.
When I was diagnosed with PD last year, confirmed by DaTscan (aged 50), I immediately suspected Covid had somehow played a part. Nobody I’m aware of in my family has PD. My symptoms all started weeks after having two episodes of Covid in 2022. I'd had no prodromal symptoms other than anxiety. Motor symptoms seemed to appear out of nowhere (unilateral tremor, bradykinesia, cogwheeling, and rigidity).
I read a bit about the surge in PD after the Spanish flu and about how viruses can trigger parkinsonism. I’ve since read a bit more.
These articles were interesting:
pmc.ncbi.nlm.nih.gov/articl...
sciencedirect.com/science/a...
onlinelibrary.wiley.com/doi...
Obviously, there’s no way of knowing the full scale of the issue yet, but the data suggests a correlation. There could be lots of people with neurological impacts from Covid who have not yet got a diagnosis, so they aren’t included in the data.
It’s suggested that Covid may have triggered PD in people who would have developed it at some point anyway but brought it out early. I suppose it's impossible to know other than looking at the genetic data of those diagnosed in the Covid aftermath to see if they carry a PD gene to identify those who would have ordinarily been susceptible, so statistically more likely to get it anyway.
If Covid has caused PD for some people, it’s difficult to know the prognosis as it’s too early to tell. Could it be a one-off brain insult that doesn’t necessarily continue on the same trajectory as idiopathic PD? Probably wishful thinking on my part there!! I fully appreciate I’m in the honeymoon phase, and I swear I’m not flexing, (I know that things can change very quickly, and I am prepared for this!) but I have, so far, ‘progressed slowly’.
I haven’t got a particularly scientific brain so find the articles hard going but I’m interested to hear if anyone else has any insights/theories into this. Has anyone else who was diagnosed post-Covid noticed that their presentation/progression is atypical?
When I’ve mentioned Covid as a trigger for my PD to friends and family (and my neurologist), I always get the impression they think I’m latching onto conspiracy theories!
Apologies if this is old news that has been done to death on here – I put Covid into the search tool and 351 posts appeared! I’m not sure I’m up for reading them all.
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SallyBeeBobs
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It's something you are going to have to live with in cope with because covid effects quite a lot of neurology, as most viruses do. Nerves are another way of referring to your general signaling system, and that involves everything from operating muscles to signaling your heart to affecting your glands, your sense of touch and pain and all what not. It's coming.
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But that comes with old age too you know. What you're going to have to balance is whether or not to continue to get vaccinations because reinfection can happen, multiple times as a matter of fact, and there will be new variants just like flu viruses and the chickenpox virus. You have to bear in mind that as you get older it's going to be harder and harder to sustain through infections. It is also starting to look to be the case that and the more immunizations you have with covid, the number of subsequent infections also tends to go up, in part because the nature of immunization is to defeat or deactivate certain parts of your immune system in order for the immunization to take effect.
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Thus while immunization will lower infection for some period of time, eventually the immunization wears out and then you have reinfection and you also have new variants, just like the flu vaccine and the flu viruses that change from year to year.
You're going to have to think of covid the way you think of flu. Adopting a lifestyle which allows you to avoid as much as possible exposures is probably important as you get older. You know, washing hands, when you see somebody coughing in the grocery store go the other way for a while, wash your hands as soon as you get home because dirty hands will have also handled all the foods and cans and whatnot you buy, and shopping carts are among the dirtiest things around, the handle parts I mean.b Don't spend a lot of time where people congregate in large numbers indoors or where there are lots of children or people who work with them (daycare, schools, teachers and teacher aides). Take your vitamins, be active as you are able, do what you can to get actual sleep and rest. Don't eat crap, don't drink alcohol. And to the extent you can, avoid medications and treatments that work by compromising a portion of your immune system . IF you can manage it.
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And to the extent you can, don't fuss either. One way to do that is adopt a stoic posture, I mean stoicism the Stoicism School of philosophers. Which is actually quite easy and satisfying to learn about it and adopt. One that I use is I look at my pets and I think about getting by with covid and PD, versus the alternative, i.e, assuming "room temperature." When you put it that starkly, it's actually not such an hard choice with no benefits to think of. There are benefits. When you think of it that way one is clearly preferable and it makes me somewhat more glad to be able to make a choice, even though you are suffering greatly with PD. So I would never presume to comment about somebody else's suffering because I have seen an awful lot in my lifetime and one thing I have learned is do not presume about somebody else.
I certainly won't be getting any more vaccinations. I was offered the flu jab last week and politely declined.
Unfortunately there's no way of avoiding people as I work in a public facing role but I'm doing all I can with regards to diet, supplements, and exercise. Well, the exercise I could improve on I suppose! Alcohol is something I'm reluctant to give up entirely. Having a couple of beers relaxes me and my symptoms seem to subside (temporarily). I hate being with friends when they're all having a few drinks and I'm sat there with a cup of tea. I don't think it's had a negative effect so far.
Your'e right, acceptance and stoicism is probably the best way to come to terms with things. Most of us will probably never know what caused our PD. It would be unlikely to change the outcome even if we did. If we did know, it would probably lead to us regretting things we had done (or had happened to us) rather than just getting on with things.
I was actually chatting with my son the other day about stoicism. He really enjoys reading about philosophy. I'd always assumed it just meant being resilient but as you say, there's more to it than that. I'll read more about it.
There will be more viruses, and more exposures to toxins and pollutants that we don't even know about - we can only do our best.
one way to avoid some infections is never touch a doorknob or door handle or shopping cart without disinfecting it first or put your sleeve or part of your jacket in between your hand and the door handle - we still wear masks in public and you can also use a disinfectant wipe on your face around your eyes, nose, mouth - After I started disinfecting the shopping cart handles and never touched a door I had one cold and that was due to a co-worker who had a cold and did not cover her cough but I think if I had thought of using the disinfecting wipes back then maybe I could have avoided that one as well in 2008
Back then it was important but not as life threatening
Now that is interesting! As I say, I'm not particularly good with science but that implies that Covid triggers something PD-like in the general population? Even if it's not a precursor to PD, there's something going on that affects the way the brain reacts to the virus that mimics PD (acting out dreams, olfactory dysfunction, and gastrointestinal symptoms). Perhaps in those genetically sensitive, it's enough to be the catalyst that kicks off neurological degeneration.
My sleep is only really affected by needing to get up to go to the loo several times a night so I've not really experienced proper sleep disturbance but I do remember when I was a child experiencing very strange and vivid dreams when I had a fever. I was also prone to a bit of sleepwalking as a teenager. My partner said I sometimes talk nonsense in my sleep.
I only skim read this article but I'll read it properly when I get a chance.
' Inflammation and oxidative stress are critical underlying mechanisms associated with COVID-19 that contribute to the complications and clinical deterioration of patients. Additionally, COVID-19 has the potential to alter the composition of patients’ gut microbiota, characterized by a decreased abundance of bacteria with probiotic effects. Interestingly, certain strains of these bacteria produce metabolites that can target the S protein of other coronaviruses, thereby preventing their transmission and harmful effects. At the same time, the presence of gut dysbiosis can exacerbate inflammation and oxidative stress, creating a vicious cycle that perpetuates the disease. Furthermore, it is widely recognized that the gut microbiota can metabolize various foods and drugs, producing by-products that may have either beneficial or detrimental effects. In this regard, a decrease in short-chain fatty acid (SCFA), such as acetate, propionate, and butyrate, can influence the overall inflammatory and oxidative state, affecting the prevention, treatment, or worsening of COVID-19. This review aims to explore the current evidence regarding gut dysbiosis in patients with COVID-19, its association with inflammation and oxidative stress, the molecular mechanisms involved, and the potential of gut microbiota modulation in preventing and treating SARS-CoV-2 infection. Given that gut microbiota has demonstrated high adaptability, exploring ways and strategies to maintain good intestinal health, as well as an appropriate diversity and composition of the gut microbiome, becomes crucial in the battle against COVID-19. '
It is already established that gut dysbiosis is the norm in in PD. It is also established that excess oxidative stress and neuroinflammation levels are two major hallmarks of PD progression as well as other diseases and health conditions. It is also already established that short chain fatty acids (SCFAs) are lower in people with PD as discussed here :
' The PD microbiome is characterized by a decreased level and diversity of SCFA-generating bacteria, especially those that generate propionic acid and butyric acid [[5], [6], [7]]. Fecal samples of patients with PD showed lower levels of SCFAs as compared with healthy individuals [9]. '
Given the above information, it seems that if Covid-19 further expands the gut dysbiosis, oxidative stress levels, inflammation levels while decreasing the helpful SCFA levels along with decreasing levels of healthful gut bacteria along with their health promoting effects, then exacerbation of PD symptoms, severity and possibly faster disease progression seems highly likely if a person with PD gets Covid-19.
I do not feel that Covid-19 is causing PD, only exacerbating and potentially increasing disease progression. Gut dysbiosis is seen in PD patients years before symptoms and diagnosis. So I find it more likely that Covid-19 is merely increasing the level of the dysbiosis to a level that exposes the the disease that was already in progress, but not yet showing symptoms or previously diagnosed.
You will find the following link of a newer (October 24, 2024) gut/pd literature of interest related to your line of thinking :
This makes sense, Art as it would explain the worsening of symptoms in people already diagnosed, as well as triggering symptoms in people who had no obvious symptoms previously.
There does seem to be increasing evidence that PD starts in the gut.
I'd assumed from what I've read, that I have the brain-first type as I haven't (yet) had any loss of smell, constipation, etc and the DatScan showed asymmetric loss but I should imagine gut biome still plays a part in progression, if not being initial cause? Viruses could exacerbate existing gut dysbiosis alongside damaging the brain directly (via inflammation)? Double whammy!
I take nattokinase supplements and bacillus subtilis but will be looking into additional options. I've considered taking an omega 3 supplement but I've read that most on the market are highly oxidised which can actually be detrimental.
I'll read more about SCFAs.
The article on molecular degeneration looks heavy going but I'll give it a go!
Thank you for providing the relevant quotes - it makes it so much easier to digest. You clearly know your stuff! I'll read more of your previous posts.
my husband had a period of feeling very well then tested positive to covid but it was extremely mild like a mild cold then he went downhill PD wise for many months but then recovered and has been very good again for more than a year. I definitely think the covid knocked him due to the PD.
And the PD worsened for a time because of covid......Or flu....Or antibiotics. Any illness makes the PD symptoms worse. But then the symptoms return to baseline I think.
My nonscientific thought on the matter is a predisposition to PD that the covid accelerated. So PD would have happened regardless but precipitated, in your case, by covid,
I think I've been trying to delude myself that if Covid triggered PD, then it might not necessarily be 'normal PD' (whatever that is!)
The things we cling on to to give us hope!
I now know that Idiopathic PD is just PD without a known origin. For some reason (to my shame), I thought that idiopathic PD just meant bog-standard PD!
I look forward to reading more about this once more research has been done.
Thanks for your note. I was diagnosed with PD via datscan after i got 1st covid vaccination at age of 43. Prior to that in healthy condition and no other constraints, completely understand your feelings since it is difficult to deal with atypical physical complaints. All the best
However, starting to take D3 supplements may seem to make PD worse ! The reason is that D3 promotes a gut enzyme ( Cyp3A4) that 'breaks down' l-DOPA. That is why grapefruit juice -which inhibits cyp3A4- extends the action of lDOPA. Your physician will know about the grapefruit juice effect, but possibly not in context of lDOPA.
I take 10,000 IU four days a week. And magnesium 300mg elemental.
Note in the Holick paper I cited the importance of the Maasai rural dwellers and defining our ancestral, physiological serum level. That same population have zero to very few over-60s with PD. Its a big clue to the importance of D3 in the age-related PD.
Your post inspired me to finally fill out my profile and become part of the conversation rather than just lurking here.
I like you believe that my Parkinson's was a result of Covid 19. WE were in Palm Desert when the Tennis Tournament was cancelled due to the virus and we decided it was time to head back to Canada before our insurance was cancelled. We suspect that we got Covid on the way back staying at a motel in WA State. My husband got very sick, he was down for about 3 weeks and I was very mildly affected. There was no testing at that time and when we called the doctor they told us to stay home unless he had major trouble breathing then go to the hospital.
My initial symptom (my hubby had this also) was hair shedding so it was not suspected as PD. A few months later I started to have shaking in my hands and some shuffling when I was walking, My writing was very small and I was terribly constipated and had trouble sleeping, also my movements were very stiff and my normally happy face was expressionless. My GP suspected that I had PD and prescribed Carbo/Levodopa around Aug 2021 and put in a request for a neurologist appointment and ordered a MRI, I never did get a call in the time we were living in BC. We moved to Alberta in April of 2022 and I saw a neurologist within a few months. He confirmed that I had PD. We did not get the Covid Vax.
I stopped taking the C/L after about 2 weeks from my initial prescription and again about 2 weeks after the neuro prescription because I saw no benefit from it. I took Berberine for about 6 months and it stopped my shaking and shuffling but stopped when it provided no further progress.
I saw a new neurologist in Calgary in May of 2024, he started me on C/L again and I have continued it.
I contacted Dr. W. Makis in Aug of 2024 after following him online and he agreed to advise me on an alternate protocol. I feel that because I had initial success with Berberine my Parkinson's might have been caused by a parasite. I continue to follow it currently. I was his 1st Parkinson's consultation and you may have read my email to him on his substack or X accounts.
I have resolved many of my PD symptoms since following his protocol. I have much freer movement of my upper body, constipation resolved, normalized arm swing, my handwriting is normal with a little focus, and my expression is back to normal. My friends tell me all of the time that I look like I am glowing! I can swing my golf club normally again which is a huge deal to me.
I continue to struggle with my feet sticking somewhat, this is my most frustrating symptom presently but I am hopeful that in time this too might improve. I have taken enough of your time for now I think this is turning into a book rather than a message. Best of luck to you!!
Hi Sally, my protocol includes high dose ivermectin, vit D3, Artemisinin, Resveratrol, Black Seed Oil, Olive Leaf Extract, Chlorine Dioxide (Protocol C). The protocol included high dose melatonin but found it gave me insomnia so I quit it early on.
Please understand that I am not recommending this protocol to anyone as there are obviously controversial components and this protocol was for my unique situation. I am simply answering your question re my personal protocol, I hope it is helpful.
Yes I agree that COVID definitely has something to do with my diagnosis, my tremors started within couple of weeks of the first AstraZeneca jab but it took almost 2 years after the jab to get the confirmation following a Datscan, numerous test where done prior to this. I was fit and healthy prior to that with no symptoms, I’m sure this will come out at some time in the future. I’ve mentioned this to my GP and physio and they are not fans of the COVID jab and have seen a lot of issues as a result of the jab but couldn’t be more specific to avoid any comeback. It’s sad really that they managed to push out a Covid jab within a matter of months but they can’t find cures for neurological diseases which are increasing exponentially…
I totally agree with you!. The jab was rushed out and I'm sure there was a huge amount of money made from the hype and hysteria during Covid. Far more tempting to cash in quickly from a vaccine for vast amounts of people all at once than spending time on long term trials for chronic disease that may end up being futile.
I should imagine physicians need to tread carefully with criticising the vaccine! A lot of them probably know a lot more then they're letting on.
Problem is everyone that’s had the vaccine has also probably had covid a few times too so how can anyone know which was the cause? And without the vaccine would it be even worse?
Yes, it's very frustrating that anyone who actually bothers to think laterally and deeply becomes thought of as a 'conspiracy' theorist. You could label those who don't bother to think or question anything as 'sheep' 😂
Hopefully it will lead to more research into the origins of neurological disorders.
I think Covid was quite divisive and some people got very emotional and judgmental about Covid and the vaccine. A lot of people on social media trying to claim the moral high ground in the frenzy that existed at the time.
With hindsight, I wish I hadn't got the vaccines, and I wish I hadn't nagged my children to do it either. But who knows the truth eh?
My symptoms also started after Covid 19 (2021)and every time after that (I caught the virus, 4 times even though I was vaccinated 3 times ) my symptoms worsens and I had to change - upgrade my medication.I am a paediatrician that is the reason why I caught it so many times.✖️
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