PD: the gut, covid, etc.: Good afternoon... - Cure Parkinson's

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PD: the gut, covid, etc.

SallyBeeBobs profile image
120 Replies

Good afternoon,

I was diagnosed with PD by DatScan 3 weeks ago (age 50). As I'm sure is standard at this stage in my diagnosis, I am trying to navigate my way through the wealth of information out there. I am fluctuating between self-pity, defiant positivity, and utter bewilderment.

I’m so very grateful I found this site. The contributors all seem so informed and educated which is reassuring, although some of the scientific content is beyond me!

I’ve (obviously) been reading up on how to slow down PD progression. Whether this is futile or not, I don't know, but it is giving me something to focus on. Obviously, there's exercise, and I've been doing plenty of that! I’ve also been reading, with interest, about gut biome. I was hoping someone with more scientific knowledge than me could answer a few questions.

With reference to the Helsinki Study’s claim that desulfovibrio is a potential cause of PD, I read that agave inulin (already part of my regimen) can reduce the levels of desulfovibrio. I also read that glycomacropeptides also help. How do we get glycomacropeptides? It appears that whey protein powder is a good source. Anything else?

I’m also taking Nattokinase and a Bacillus subtilis supplement. Is there any point in both or are they part of the same process in the gut?

Also – Covid:

I’m another person who was statistically unlikely to get PD. No history in the family, no other risk factors that I’m aware of. My symptoms started weeks after having Covid and having the jab.

There seems to be an increasing amount of evidence that covid could be a trigger. I have a friend whose son (in his twenties) has been diagnosed with young onset Alzheimer’s after a particularly nasty covid infection.

Is this something you think will be further investigated?

Thanks in anticipation of anyone who might respond to my ramblings.

Cheers, Sally.

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120 Replies
Stillstandingstill profile image
Stillstandingstill

Hi there.

I was also diagnosed at the age of 50. Four years later, it's still relatively early days but so far so good. Could be something I'm doing or I've got a slow progressive type.

Lots of interesting content on here. We are all experimenting in one way or another. I don't have the scientific knowledge to answer your questions but would point you to three excellent sources of information.

1.Laura Mishley is a PD specialist, particularly with regards to nutrition. She is collecting information on diet and lifestyle, and disease progression and there are some interesting correlations.

2.Dr Simon Stott is the Director of Research at Cure Parkinson's and produces brilliant content on various studies and topics.

3.Nosilverbullet4pd.com. has a fantastic back catalogue of topics/interviews and usually has new speakers every month or so.

I'm also working on my gut health, my priorities being consuming 30 plus plants a week (organic where possible) and reducing meat. I've started drinking a cup of chicory coffee a day, another source of inulin. Worth a try.

Hope that's useful.

SallyBeeBobs profile image
SallyBeeBobs in reply toStillstandingstill

Hi Stillstandingstill

Thank you for this. Yes, that is useful, very useful. I’m looking forward to looking into all 3 of your suggested sources at some point today. I’m working from home so can take a few breaks here and there for some research!

It’s good to hear your PD is progressing slowly. I suspect mine is too because I’d had symptoms for about 3 years. So far, this is limited to a tremor in my left hand (worsened by anxiety), rigidity and cogwheeling in my left hand / arm, difficulty sleeping, and anxiety. It hasn’t actually progressed much at all in three years. I know things can change quickly but from what I’ve read, slow progression at the start typically predicts a slower progression longer term (a healthy dose of wishful thinking right there).

I’ll also look into chicory coffee.

Thanks again.

Stillstandingstill profile image
Stillstandingstill in reply toSallyBeeBobs

You're very welcome. You will be bombarded with suggestions but I would add that I've found yoga to be a great help, not just for strength and flexibility, but for breathing awareness and relaxation. It's a useful tool for those of us with anxiety.

Biscuit61 profile image
Biscuit61 in reply toSallyBeeBobs

sounds v similar to my PWP - also do Glynac supplement and prebiotic insulin from Golden Greens ( uk) will look into Nattokinase too

Partner tries do fast walking every day plus stretching exercises

I agree it’s a minefield sifting out good info etc this site is a godsend !!

Hoping like you for slow progression…

Interesting the Covid connection too

Bolt_Upright profile image
Bolt_Upright

I take 1200 mg of Berberine a day, in part, due to it reducing desulfovibrio:

Effects of Berberine on the Gastrointestinal Microbiota ncbi.nlm.nih.gov/pmc/articl...

The mechanism of berberine alleviating metabolic disorder based on gut microbiome ncbi.nlm.nih.gov/pmc/articl...

You should join some of the Zoom calls MBAnderson is so nice to host. Lots of nice and VERY knowledgeable people. If you ware wondering about it, most likely we have talked about it (or tried it).

us02web.zoom.us/j/833522248...

Thursdays, 7 PM – 8 PM-ish, US Central Daylight Time (GMT–6.)

Sundays, 11 am – 12 PM-ish, US CDT.

SallyBeeBobs profile image
SallyBeeBobs in reply toBolt_Upright

I’m going to read that those reports on Berberine. Sounds like another one for my arsenal!

I would actually love to join those Zoom calls. Are they every week??

Thank you. Very much appreciated.

Bolt_Upright profile image
Bolt_Upright in reply toSallyBeeBobs

every week!

Biscuit61 profile image
Biscuit61 in reply toBolt_Upright

Hi Bolt

Think Berberine one of the more scary supplements re poisoning etc or Ann i confusing it with something else

This is first time hearing disolflovibrio ( sic)

Will see what supp best to add for partner - thanks for info

Bolt_Upright profile image
Bolt_Upright

I also have almost 2 cups of broccoli sprouts EVERY morning:

"Desulfovibrio, a source of LPS, reduces the amount of short-chain fatty acids in the intestinal tract through lactic acid consumption and suppression of growth of Bifidobacterium, thereby attenuating tight junction. In addition, hydrogen sulfide, a metabolite of Desulfovibrio, inhibits peristalsis, thereby retaining the LPS-containing intestinal contents and promoting LPS absorption. The functional component of the broccoli sprouts, glucoraphanin, is metabolized by enteric bacteria to sulforaphane. Sulforaphane inhibits the growth of Desulfovibrio and the entry of LPS into the blood" Regulation of Gut Microbiota and Metabolic Endotoxemia with Dietary Factors mdpi.com/2072-6643/11/10/2277

Broccoli sprouts are not expensive if you sprout your own. It's actually really easy, kind of fun, and takes very little time. I have complete sprouting instructions here: rbd-pd-protocols.blogspot.c...

Discogs_discogs profile image
Discogs_discogs in reply toBolt_Upright

Bolt, what do you think of sulphorophane supplements instead of broccoli sprouts..... So much easier!

Bolt_Upright profile image
Bolt_Upright in reply toDiscogs_discogs

So... first, I think sprouting is pretty easy and cheap. It is intimidating at first, but really takes almost no effort at all. These are my sprouting instructions: rbd-pd-protocols.blogspot.c...

Second: I am not an expert on sulforaphane supplements but have never heard good things about the supplements. They are expensive and I have never seen them used in any studies (but they probably have, I just did not see it).

Third: If I was going to use an alternative to Broccoli Sprouts, I would use these freeze dried sprouts. These are what I started on: KOYAH - Organic USA Broccoli Sprout Powder (1 Scoop = 1/4 Cup Sprouts): 36 Servings, Freeze-Dried, Tested for Active Myrosinase and Glucoraphanin (Sulforaphane Glucosinolate) amazon.com/gp/product/B082Z...

Bolt_Upright profile image
Bolt_Upright

Also: Curcumin. I have other posts on curcumin, but this is a quick find on curcumin's effect on desulfovibrio.

"Curcumin modified the gut microbiota composition, increased microbial diversity, and, in particular, reduced endotoxin-producing Proteobacteria and Desulfovibrio levels in T-AChR-induced gut dysbiosis. Moreover, we found that curcumin significantly increased fecal butyrate levels in mice with T-AChR-induced gut dysbiosis. Butyrate levels increased in conjunction with the increase in butyrate-producing species such as Oscillospira, Akkermansia, and Allobaculum in the curcumin-treated group." Curcumin protects mice with myasthenia gravis by regulating the gut microbiota, short-chain fatty acids, and the Th17/Treg balance sciencedirect.com/science/a...

I take 1 gram of Meriva Curcumin twice a day (morning and night). I have a post somewhere here on why Meriva may be better. I use Doctor's Best. There is a link here: rbd-pd-protocols.blogspot.c...

SallyBeeBobs profile image
SallyBeeBobs in reply toBolt_Upright

That's great Bolt_Upright. Thank you so much for all of this. The PD protocol looks really comprehensive.

Can I ask...do you take all of your supplements together at the same time? I sometimes worry that certain supplements might affect the absorption of others. Or, do you alternate them?

It would be really good to know that washing them all down in one go with a smoothie would be enough for the day. At the moment, I'm spacing them all out throughout the day.

Bolt_Upright profile image
Bolt_Upright in reply toSallyBeeBobs

Most importantly: I have a high school degree and no medical training.

So... 3: first thing in the morning.

4: Before 1 PM, first thing I eat, don't eat for 30 minute afterward.

5-11: All of these together early in the day, and the ones that way twice a day,those near the end of the day together. I actually take 2 bottles of Yakult, not 1. And I ran out of Oxytocin and did order more.

12-15 together before bed.

=============================

3: Lithium Orotate 30 mg at 8 AM. This is for depression AND it may be neuroprotective. They completed a trial on Lithium for PD in Buffalo.

4: Two cups of broccoli sprouts every morning at 10 AM.

5: L-Methylfolate 15 mg at 9 AM.

6: Vitamin C 1 gram at 9 AM.

7: 1 gram of Meriva Curcumin at 9 AM and another gram at 9 PM.

8: Berberine 400 mg 3 times a day (2 at 9 AM and 1 at 9 PM).

9: Niacin Rapid Release 1 gram at 9 AM and another gram at 9 PM (I am probably taking too much Niacin. Please do your own research).

10: Oxytocin Nasal Spray 12 IU per nostril at 9 AM and then again at 9 PM.

11: lactobacillus Casei Shirota (Yakult): Anti-bacterial, anti-fungus, anti-inflammatory, anti-viral, reduces cortisol levels.One bottle a day.

12: 600 mg Palmitoylethanolamide with Luteolin before bed.

13: Magnolia Extract 400 mg (90% Honokiol and Magnolol) before bed. This is supposed to help with REM Sleep Behavior Disorder and be neuroprotective. I get this from Swanson cheap.

14. NAC 1200 mg before bed.

15: Taurine 1 gram before bed.

SallyBeeBobs profile image
SallyBeeBobs in reply toBolt_Upright

That's an impressive regimen! Thanks for sharing it.

What is no. 14 (NAC)?

Bolt_Upright profile image
Bolt_Upright in reply toSallyBeeBobs

N-Acetyl Cysteine

That blog post I linked to has links to most of my supplements: rbd-pd-protocols.blogspot.c...

SallyBeeBobs profile image
SallyBeeBobs in reply toBolt_Upright

Brilliant. Thank you.

Discogs_discogs profile image
Discogs_discogs in reply toBolt_Upright

Bolt, you don't take vitamin B1?

Bolt_Upright profile image
Bolt_Upright in reply toDiscogs_discogs

No, I only take B3 as Nicotinic Acid. I also get B12 in my L-Methylfolate.

Discogs_discogs profile image
Discogs_discogs in reply toBolt_Upright

What brand of oxytosin nasal spray do you prefer?

Bolt_Upright profile image
Bolt_Upright in reply toDiscogs_discogs

I recently ran out of Oxytocin and did not re-order. Much like the Vinpocetine, Oxytocin was not near the top of my list of things that meshed with my theories on what my problems might be, so I just let this fall to the side.

This is what I was using: OxyPure Oxytocin Spray - 12IU $44.95 walmart.com/ip/OxyPure-Oxyt...

Discogs_discogs profile image
Discogs_discogs in reply toBolt_Upright

Sorry to pepper you with questions, Bolt, but don't I recall that your regimen used to include vinpocetine? If so, why did you eliminate it?

Bolt_Upright profile image
Bolt_Upright in reply toDiscogs_discogs

Ask away. I was just noticing I still have some Vinpocetine and thought about taking it the other day.

Why I stopped taking Vinpocetine:

1: No good reason. I just like to cap the number of supplements I take and I decided to drop Vinpocetine.

2: Also, I try to have somewhat of a theory about what causes PD and what to do to address it and then have most of what I do support those themes. My main focuses are reducing inflammation, fixing intestinal permeability,supporting mitochondria, fixing the microbiome, boosting SCFAs, and weakening pathogens. I think that is the list. I don't "think" Vinpocetine addresses those issues.

3: Again... I am reminded how promising Vinpocetine seemed. I may reconsider and add it back to my stack some time.

chartist profile image
chartist

Regarding the gut microbiome and PD, this may interest you :

healthunlocked.com/cure-par...

Art

SallyBeeBobs profile image
SallyBeeBobs in reply tochartist

Thanks Art - I'll take a look.

Fergle profile image
Fergle

HI Sally. I was diagnosed about a year before covid, but like you and many others on here, I am trying to prelong the use of sinemet/other medication, so I will have that aa a last resort if all else fails. I have tried many things over the year's with limited success, but in the last few week's I have found something that helps me dramatically. In fact, I have never felt so good, even before Pk. As it's early days and might be placebo, I don't really want to share it on something as wide reaching as this forum at this stage, but as your post brought back those horrible memories of getting the dreaded diagnosis,and the emotions that throws up, if you want to private message me, I will be happy to say whats worked so far for me. It is really simple and costs peanuts to buy, and kind of makes sense to me. I am not medical, selling or anything like that, but I have found this website very helpful in my fight to find my own cure, so I feel I want to give back at some stage if I have success. I am waiting much longer to see if it continues, but all I can say is my whole body is healing from top to bottom, so I am cautiously optimistic. PM me if you are interested and I'll tell you and you can make up your own mind if you want to try it. Fergle

Edge999 profile image
Edge999 in reply toFergle

I would love to know too

Begniar77 profile image
Begniar77 in reply toEdge999

Can I get the info too?

Rabilo profile image
Rabilo in reply toFergle

Please me too 🙏🏼🙏🏼

SallyBeeBobs profile image
SallyBeeBobs in reply toFergle

Hi Fergle - I'm intrigued. It would be great if you could share!

Paranada profile image
Paranada in reply toFergle

Me too please.

Youngoma profile image
Youngoma in reply toFergle

Please share

YoungPD-48 profile image
YoungPD-48 in reply toFergle

Please share what works for you, I might get some help

TimmieCat profile image
TimmieCat in reply toFergle

Please, may I have that info, as well? I understand you're in early stages of testing and have no guarantees.

penny1507 profile image
penny1507 in reply toFergle

May I have the information too please

GuineaBird profile image
GuineaBird in reply toFergle

Hi Fergle - Please send me your info.

JayPwP profile image
JayPwP in reply toFergle

I suggest you share the information here itself for the wider audience

okieh8 profile image
okieh8 in reply toFergle

Kann ich bitte auch die Informationen haben. Herzlichen Dank.

asparagu profile image
asparagu in reply toFergle

I think if you start making a disclaimer about your method not being guaranteed to work for every one with Parkinson's, then you can share what has worked for you with the rest of the community. Wishing you the best on your journey.

Ghmac profile image
Ghmac in reply toFergle

You like this page because everyone shares…. Your turn.

Gisel profile image
Gisel in reply toFergle

Dear Fergle,

I am interested too. How can I get into contact via PM?

Fergle profile image
Fergle in reply toGisel

PM me on email harrison671@btinternet.com

jennrich profile image
jennrich in reply toFergle

Hi Fergie...I, too, would be interested in what you've been doing. My husband was diagnosed nearly 10 years ago and has been doing very well, but has an appointment with a new neurologist in a couple of weeks. He is considering a drug. He has not used any prescription drugs so far. If what you have used could help him kick the prescription drug down the road a bit we would surely appreciate your information. Thank you!

Despe profile image
Despe in reply toFergle

A very mysterious PwP. . .that you are. Tell us a little about your PD! Why PM? Why not sharing your success with this forum?

Weng888 profile image
Weng888 in reply toFergle

Can I have the info too, pls

jeeves19 profile image
jeeves19

Sally. The trouble with all of the weird and wonderful advice you’ll receive is that in the short term you won’t notice much change in your symptoms but you might do n the longer term. The best thing is hard exercise - virtually every day - and you’ve got to sweat. Your gut will work better if you minimise sugary things and ramp up the good stuff (leafy greens etc). Stay socially connected, remain intellectually curious. I’m told B1 helps although I’ve never actually found this to be true.

When I was reading your post, I thought ‘she’s British’. Funny how one picks these little things up eh ?

SallyBeeBobs profile image
SallyBeeBobs in reply tojeeves19

Thanks Jeeves19, that all sounds like good advice. I wish I enjoyed exercise more that I do but I'm pushing myself as hard as I can (6 days a week). I'm lucky really because we have a treadmill and rowing machine at home.

I actually started on B1 (Benfotiamine) yesterday so I'll see how that goes.

I totally get where you're coming from with the 'staying socially connected'. For the first week after diagnosis I just hid. I didn't want to talk to anybody. I've started to come out of that now which is good.

I think this site is definitely helping with intellectual curiosity - I'm learning so much.

And yes, I am British! I live not far from Liverpool. Are you?

Thank you.

jeeves19 profile image
jeeves19 in reply toSallyBeeBobs

Brum. Although I went to Liverpool Uni and did my teacher training there as well.

BH68 profile image
BH68

Hi. I was also diagnosed age 50, DAT scanned. I’d echo the comments above about exercise, engagement & nutrition. Progression so far is slow. Drugs have helped. Good luck!

SallyBeeBobs profile image
SallyBeeBobs in reply toBH68

Thanks BH68. I've not started on any PD drugs yet. However, I have been taking Propranolol for years which actually helps with the tremor so I'm sticking with that for now.

Astronomer90 profile image
Astronomer90 in reply toSallyBeeBobs

I have right hand tremors for over 3 years. I was misdiagnosed earlier but it is confirmed PD with DatScan. Sinamet and amantdine didn't help my tremors. Only propranolol helps with tremors. With tremors progressing, the 20 mg dose is not affective that much. Just wondering what dose works for you? My MDS is very adamant and don't believe in propranolol. He keeps pushing sinamet dose. I am getting propannol prescription from my family doctor who is more supportive.

SallyBeeBobs profile image
SallyBeeBobs in reply toAstronomer90

I take Propranolol (40mg) three times a day for anxiety (fast heart rate, adrenaline rushes). Have done this for over 10 years - way before any hint of PD. Initially I had thought (hoped) that the onset of my tremor was 'just anxiety' but the DatScan proved otherwise!

Propranolol (even at 40mg) does not completely remove the tremor but reduces it significantly so it is barely noticeable to others.

I was actually looking into Gabapentin as an option because apparently it helps with tremors and anxiety. That's something I'm going to speak to my neurologist about when I meet with him in October. I'd rather that than start on PD meds when anxiety and tremor are my main symptoms.

Good luck with getting the higher dose Propranolol. Are you in the US? I think it's quite common for it to be prescribed for anxiety here in the UK. I'm not sure I'd have been prescribed it for PD though. I just happened to already be on it.

Astronomer90 profile image
Astronomer90 in reply toSallyBeeBobs

Thanks for sharing. I am in Canada. Propannol reduces my tremors and I take only if I have to go outside or sometimes to the office as I am working from home. My MDS is not prescribing propannol as he keeps trying increased Sinamet doses. I will ask my family doctor if he can prescribe higher dose.

Hikoi profile image
Hikoi in reply toSallyBeeBobs

Are you aware that anxiety is a common symptom od Parkinsons? For me anxiety alerts me to being low on dopamine and needing another tablet of sinemet. If you took prescription meds you may find your anxiety alleviated.

Propanolol is given to people for essential tremor. You could have a mix of PD tremor and essential tremor, it happens.

darkchoc profile image
darkchoc in reply toSallyBeeBobs

hi Sally sorry about your diagnosis. I’m 2 years into mine though looking back my symptoms began in 2020 after a bout of Covid. My key symptoms are tremor and anxiety which I and the neurologist and GP are keen to treat. I’ve tried various meds unsuccessfully and the latest is propranolol. Do you mind telling me how you get on with it alongside vigorous exercise? So far I’ve taken the odd 10mg pill when I feel I need it. It works but the next day I’m shattered and if I exercise then I can’t get my heart rate up which is what we need to do! Once I took a double dose and on my next brisk walk gradually just came to a standstill!

SallyBeeBobs profile image
SallyBeeBobs in reply todarkchoc

Hi darkchoc,

When I first started on propranolol, it made me feel a bit weird if I exerted myself in any way (running, climbing stairs too fast). It was like I could feel my heart being slowed down by the drug. But I'm used to it and now and I don't even notice it. If I know I'm going to be doing vigorous exercise, I usually don't take it because, as you say, it's important to get an elevated heart rate to get full therapeutic benefits for PD (if I've read the literature right).

I think it's just a case of getting used to it. It really does help with the tremor and the physical symptoms of anxiety.

I'm on 40mg three times a day and don't feel anything other than relief from it.

I hope it works for you.

Sally

darkchoc profile image
darkchoc in reply toSallyBeeBobs

thanks for your reply- I think I’ll persevere! All the best to you.

Hikoi profile image
Hikoi in reply todarkchoc

Do you take levadopa darkchoc? That will help your anxiety

darkchoc profile image
darkchoc in reply toHikoi

thanks Hikoi. I do but it is the minimal dose so I hardly notice the difference.

Edge999 profile image
Edge999

i find keto is working well for me. Look up Matther Philips, read grain brain and watch this

youtu.be/wyOPFWqbxyE?si=41e...

Magnesium definitely helps, take multi b vitamins and I take curcumin just incase!

SallyBeeBobs profile image
SallyBeeBobs in reply toEdge999

That's going to be my lunchtime viewing. Thanks for sharing this, Edge999

SallyBeeBobs profile image
SallyBeeBobs in reply toEdge999

Really interesting stuff, especially considering she's an expert in nutrition and psychiatry. Smart woman. I've actually followed a keto diet (on and off) for years. I feel really good when I'm on it. I've been trying to stick to nutritional ketosis since my diagnosis. I think I'm going to stick to it!

Edge999 profile image
Edge999 in reply toSallyBeeBobs

I’ve had it 2 years diagnosed at 44. I lived like a zombie the first year until i switched into med diet where i saw a big improvement and an even bigger with keto. Im convinced sugars/carbs are part of the problem

SallyBeeBobs profile image
SallyBeeBobs in reply toEdge999

I'm hoping you're right. I've never eaten so many eggs in my life!!

muraterturk profile image
muraterturk

This is the latest scientific article on the relation between gut microbiota and PD. Based on their suggestion my wife who has PD started to take riboflavin and biotin, and after 3 weeks her life quality improved almost 40 %.

muraterturk profile image
muraterturk in reply tomuraterturk

nature.com/articles/s41531-...

SallyBeeBobs profile image
SallyBeeBobs in reply tomuraterturk

Thanks for this muraterturk. I'll have a read. I take a B-Complex which I think has both riboflavin and biotin. I'll check. Good to hear about your wife's improvement...I hope it continues!

NextStage profile image
NextStage in reply toSallyBeeBobs

I had been taking a B-Complex for years. However, after learning about people with PD being so deficient in riboflavin and biotin, then I stopped taking the B-Complex and added 100 mg of Riboflavin (B2), 10,000 mcg of Biotin (B7) and 100 mg P-5-P (B6). I had already been taking 150 mg Allio thiamine TTFD (B1), 100 mg Niacin (B3) and 500 mcg B12. The Nature's Bounty B-Complex I had been taking only had 20 mg of Riboflavin and 1,000 mcg of Biotin.

SallyBeeBobs profile image
SallyBeeBobs in reply toNextStage

So taking them separately so you can ensure correct dosages is probably a good idea. I'm going to revisit my regimen once I've read all the info that's been kindly recommended on this thread. So much to read! Thanks NextStage.

Stag10 profile image
Stag10

hi sally sorry to hear that you have been diagnosed with PD a dr told me he thought I had long Covid and maybe not PD but I’m still in the waiting room on that topic but you might be interested in trying Daphne book on B1 vitamins and see if that works for you and sending her a message to apart from that I can’t help you much more on this dreadful disease what we are going through good luck with everything kind regards Deano

SallyBeeBobs profile image
SallyBeeBobs in reply toStag10

Yep, it's a minefield. I have a bit of a backlog of things to read at the moment after all the fabulous info put on this thread but if I catch up with myself, I'll look into that book. Thanks Stag10.

Stag10 profile image
Stag10 in reply toSallyBeeBobs

You are welcome take care of yourself Deano

28028pdralph profile image
28028pdralph

I agree about Covid, my tremors started couple weeks after my first astrazenca jab, I feel this has caused my pd but medical field say that it would have be brewing so to speak years ago, I was also 50 when I had my Covid jab but my pd took 2 years to be confirmed.

SallyBeeBobs profile image
SallyBeeBobs in reply to28028pdralph

There does seem to be a lot of people who state they were diagnosed with (or developed symptoms of) neurological disorders after the virus or the jab. I'm watching with interest. Could it be that the latent PD was there in the background but Covid kicked it off sooner than it would have ordinarily occurred?? Very interesting - but also a bit sinister!

RonB1 profile image
RonB1 in reply toSallyBeeBobs

My tremor started the day after getting the second Pfizer shot. I know that PD takes about 10 years to develop, however I am fairly certain the Covid vaccine accelerated the progression in my case.

gomelgo profile image
gomelgo in reply toSallyBeeBobs

In my case I think it was a case of a perfect storm. I had a lot of toxicity both chemical and human in y environment, In fact, one of those humans gave me covid to begin with. I had so much stress all at once that I think my body and brain just could not defend thmselves anymore.

gomelgo profile image
gomelgo in reply toSallyBeeBobs

Sinister indeed. This thing was developed in a lab, and I'm sure it was part of our collective bioweapons fear, manifesting itself in the bioweapon that harms ourselves.

Hope-full1970 profile image
Hope-full1970

I was 52 when I was diagnosed. I am now 54. My symptoms all started with the covid shot. I do not have Parkinsons in my family history. I am working with a Dr. who is removing the spike protein. He believes the shot is entirely responsible. My regular family Dr. is supportive of this theory and thinks my tremors are too rapid and not typical PD movements.I'm also seeking other help to clear up all infections, trauma and toxins. I keep in mind that the covid shot could have pulled the trigger on the the storm that was brewing in my body. I have always exercised, eaten right....etc..but I have found things that contributed to where I am today.

In my opinion, leave no stone unturned to heal the underlying causes. I think your on the right path.

SallyBeeBobs profile image
SallyBeeBobs in reply toHope-full1970

This is really interesting Hope-full1970.

It's great that your Dr is on board with your suspicions - that's quite unusual with physicians?

Without meaning to sound all conspiratorial - it's quite frustrating though, knowing that a jab could have triggered this for people?

I'd be interested to hear how you get on. Good luck.

Hope-full1970 profile image
Hope-full1970 in reply toSallyBeeBobs

Yes, my Dr. is unusual and it's also unusual my family physician agrees with the Dr. treating me for long haul covid shot injury..I think the evidence can't be denied that that there are more and more people with long term symptoms from covid and the covid shot.

I try to keep a balanced view. I know one Dr.doesn't have all the answers but maybe 1 piece to the puzzle.

Ponieboy profile image
Ponieboy in reply toHope-full1970

Yet another reason I will not get a covid vacc. MRNA is a scary thing..

Hope-full1970 profile image
Hope-full1970 in reply toPonieboy

I agree, and good for you....I think it was hard for people to say no. We were so heavily persuaded.

I got it because my husband had cancer. We knew so little about the Vax

RonB1 profile image
RonB1 in reply toHope-full1970

My tremor started the day after getting the second Pfizer shot. I know that PD takes about 10 years to develop, however I am fairly certain the Covid vaccine accelerated the progression in my case.

Hope-full1970 profile image
Hope-full1970 in reply toRonB1

I'm sorry to hear that. It does seem directly related. I'm convinced it's part of my onset.I'm unsure of where I'll end up but I'm getting a lot of help removing spike protein. I have nothing to lose. I'm doing everything I can to remove all underlying causes.

RonB1 profile image
RonB1 in reply toHope-full1970

I am trying to do the same. I read that Nattokinase breaks up the spike proteins.

SallyBeeBobs profile image
SallyBeeBobs in reply toRonB1

Yes - that's why I've been taking nattokinase - I read the article on here. Any other suggestions on how to repair potential damage from covid/jab? There really does seem to be an awful lot of anecdotal evidence of a link?

RonB1 profile image
RonB1 in reply toSallyBeeBobs

It appears that susceptible people (like us) were injured by the vaccine. The mRNA vaccine appears to trigger some type of immune response.

An mRNA vaccine is a type of vaccine that uses a copy of a molecule called messenger RNA (mRNA) to produce an immune response. The vaccine delivers molecules of antigen-encoding mRNA into immune cells, which use the designed mRNA as a blueprint to build foreign protein that would normally be produced by a pathogen (such as a virus) or by a cancer cell. These protein molecules stimulate an adaptive immune response that teaches the body to identify and destroy the corresponding pathogen or cancer cells. The mRNA is delivered by a co-formulation of the RNA encapsulated in lipid nanoparticles that protect the RNA strands and help their absorption into the cells.

SallyBeeBobs profile image
SallyBeeBobs in reply toRonB1

I think I'm going to have to read your reply a few times and do a few google searches at the same time! You've clearly done your research RonB1. My partner was describing a similar process to me earlier on when I was chatting to him about the covid connection so I'm assuming you're singing from the same hymn sheet. Fascinating and scary in equal measures.

Hikoi profile image
Hikoi in reply toRonB1

Aren’t we all suseptable to something which is why we have PD. It could be the vaccine it could be Covid it could be an anaesthetic, it could be an accident or death of a loved one that triggered PD symptoms or it could be just the passage of time. I don’t think the vaccination is any more scary than the other tings.

RonB1 profile image
RonB1 in reply toHikoi

Parkinsons is a slow neurodegenerative condition. So I don't think the vaccine caused my PD, but I do believe the vaccine Accelerated the degenerative process.

Hikoi profile image
Hikoi in reply toRonB1

Yes I think similar. I think the cause of PD is multifactorial, and time or something concrete such as Covid tip the balance. We already know that about 70% of our dopamine neurons have died when symptoms begin to show. It is now thought it could be more like 20 years before symptoms show.

As to an immune response being triggered by the vaccine, i thought that was how all vaccines work - by stimulating an immune response. Am I wrong?

Hope-full1970 profile image
Hope-full1970 in reply toRonB1

Yes, I use that.Black cumin seed oil also helps.

Hope-full1970 profile image
Hope-full1970 in reply toRonB1

Feel free to private message me. I'm kind of curious if we have similar symptoms. I have a busy weekend so I might not be able to respond for a few days...

Kwisatz profile image
Kwisatz

ncbi.nlm.nih.gov/pmc/articl... Think it over!

METRONIDAZOL!!! A simple antibiotic available EVERYWHERE! I'm doing the third course with it.

Yes, the effect? I've never been better.

TimmieCat profile image
TimmieCat in reply toKwisatz

Were you given Metronidazol specifically for your PD? What symptoms has it improved? How many courses do you anticipate will be needed? Do you view this as a "cure"?

Kwisatz profile image
Kwisatz in reply toTimmieCat

Not. I'll try it out myself. A doctor friend of mine helps me with the prescription.

SallyBeeBobs profile image
SallyBeeBobs in reply toKwisatz

I can't imagine my GP would be on board with that - otherwise, I'd give it a go!

Mob0 profile image
Mob0 in reply toKwisatz

Kwisatz , how are you doing? Did the experiment with METRONIDAZOL have tangible and lasting benenfits?

kaypeeoh profile image
kaypeeoh

I was diagnosed via DatScan four years ago. Like you, no familial history of PD. My only sign seems to be dominant hand tremor. None of the more common signs such as falling or freezing. PD is a deficiency of dopamine. But there are some who say PD can result from too much dopamine. I'm wondering if that is my situation.

SallyBeeBobs profile image
SallyBeeBobs in reply tokaypeeoh

I've not heard of this before. I suppose we all have a lot to learn from research - even the experts.

Hikoi profile image
Hikoi in reply tokaypeeoh

It is early days for you. I didnt get falling until year 16. I dont get freezing. No familial history. Like you I have tremor dominant PD

Ponieboy profile image
Ponieboy

Hi Sally. I was 50 when diagnosed too. First thing is have your pitty party and good cry and then get to business. As far as supplements we all take various ones. I take Nattokinase, also as well as several more to include astaxanthin and lots of lions mane mushrooms. Everyone has their own stack they take. Also walking , yoga and cycling are great. Speed walking is also great. Eat a healthy clean diet. There is a great group of people here to support you. We are members of the club. Oh and drink lots of water! Gotta keep everything moving. Don't be afraid to ask a question or if you need to vent, vent.. we get it ... gut health is very important. Covid I don't worry about. I play in sewage for a living so my immune system is pretty tough. (Common sense). When you find yourself overwhelmed get a good therapist and support network. I never had anxiety issues till 3 years ago. I don't take anxiety meds, big pharma gets enough of my money. Oh and learn to be your own advicate especially if you have to make a trip to the hospital or ER. Remember your not alone and you got this...

SallyBeeBobs profile image
SallyBeeBobs in reply toPonieboy

All great advice, and gladly received. Thank you Ponieboy.

Fergle profile image
Fergle

Hi Sally. If you want to contact me privately my email is harrison671@btinternet.com I can only say what has worked wonders for me, and it's only been about a month, so early day's, which is why I don't feel it would be fair/ethical to post here yet as placebo etc may be at play. You can make up your own mind if you want to give it a go....nothing to loose was my motto

Despe profile image
Despe in reply toFergle

You can burden one person at a time?? :) Please update your profile to get to know you a little better.

JohnPepper profile image
JohnPepper

I have had PD for 32 years now. After 4 years of following medical advice and getting nowhere, My late wife suggested that I start to do FAST WALKING, which she had e=been doing since I was first diagnosed with PD. As nothing else had worked, I started to do the FAST WALKKIG, evert second day, for a maximum of one hour

JohnPepper profile image
JohnPepper

Hi Sally. I have had PD for 32 years now and, have lived a NORMSAL LIFE over the last 28 years because, I stared to WALK AS FAST AS I COULD, FOR ONE HOUR, EVERY SECOND DAY; AND NEVER ON SUNDAYS.

AFTER 28 YEARS OF FAST WALKING, I COULD NEVER BE ACCUSED OF STILL HAVING PD!

i AM NOW ALMOST 90 YEARS OLD AND STILL WALKING!

TRY IT, IT COSTS NOTHING

SallyBeeBobs profile image
SallyBeeBobs in reply toJohnPepper

Thanks John. I'm using my treadmill every other day and getting out walking in the sunshine with the dogs daily. I think I could definitely improve on speed though! I'm working on it.

Hikoi profile image
Hikoi in reply toSallyBeeBobs

Having observed Mr Pepper for a number of years may I suggest you keep an open mind to the probability he doesn’t have PD but has essential tremor. No medical person has endorsed his diagnosis publicly, nor has anyone had the results he claims. He is the only one.

Kniped profile image
Kniped

l have been on low Madopar for 5 years,l feel l am doing ok except for balance and my voice,any one got any good recommendations as of how to improve both,Antibes’s would be much appreciated Libbles

jesidog profile image
jesidog

As long as my husband sings in the shower, he has his voice intact. (He was diagnosed about 12 years ago.)

SallyBeeBobs profile image
SallyBeeBobs in reply tojesidog

Do you think the singing helps to keep his intact?

gomelgo profile image
gomelgo

WElcome! I am in a similar boat when it comes to COVID. I did not get the shots but I sure as heck got the PD. I had a severe case of COVID in late November of 2019. Yes 2019. I started feeling a horrible back pain that would not go away after over a month of severe coughing and sneezing and feeling like hell, sort of like flu on steroids. I was 57 when diagnosed. No one in my family has PD, and I did the Gene study, and had none of the 7 known strains. I am 110% convinced that COVID is the reason I have PD. Even if I was slated to come down with it years down the line, and COVID sped up the process. I am fully convinced. And yes there is plenty of literature mounting about the correlation nnot being coincidental. Please share any latest stuff you have found on the connection. Mine is now outdated.

SallyBeeBobs profile image
SallyBeeBobs in reply togomelgo

I'm keeping any eye out. I have so much stuff to read after finding this fabulous site recently.

I've started reading about 'post viral Parkinsonism' and I wonder, if it differs from idiopathic PD, not only in its origins, but also in its presentation and progression. I, like others who suspect a link between covid and the onset of symptoms, have had (so far) a relatively slow progression, and 'atypical presentation'. As I said, my symptoms started within a few weeks of having the virus and the jab.

It could be, as you say, destined to have happened anyway but covid brought it forward, or it could be entirely triggered by covid,

It's interesting what previous posters said about spike proteins and the immune response caused by the virus. If the viral PD has a different cause/trigger, then we are dealing with a different beast? I'm taking my supplements diligently (inc nattokinase) in hope that the damage can, in some way, be reversed, I obviously do not know for sure that Covid had anything to do with it - but I strongly suspect it did.

I'm sure this has all been discussed in much more depth (by people way smarter and knowledgeable than me) on this site so I will make sure I try and catch up when I can.

gomelgo profile image
gomelgo

Not sure why your response to me was deleted, but I am grateful for the terms "post covid parkinsonism" because I googled it, and this was the first unsponsored result: ncbi.nlm.nih.gov/pmc/articl...

gomelgo profile image
gomelgo

I have not seen thorough discussion of this possibility thus far. So I welcome this thread. At this point, there must be mounting evidence. Even several of my neurologists have agreed this could very likely be the trigger. Including the one who diagnosed me! I went through 5 neuros because I just could not find one with a respectful and consentual approach who didn't also cost an arm and a leg because they were not in network.

SallyBeeBobs profile image
SallyBeeBobs in reply togomelgo

I don't think any of my posts were deleted. I've read that report.

I'll keep reading.

Thanks Gomelgo.

Stuff_Me_With_B1 profile image
Stuff_Me_With_B1

Hi. I've been diagnosed at Feb this year. Aged 47. I went through COVID relatively mildly but regarding to vaccine all symptoms triggered not very long after 2nd dose. Several months after

Stuff_Me_With_B1 profile image
Stuff_Me_With_B1

I haven't checked stats myself but PD nurse said that there was increase of cases past 2020

SallyBeeBobs profile image
SallyBeeBobs in reply toStuff_Me_With_B1

Google throws up all sorts of articles that support the rise in neurological disorders after covid and/or the vaccine.

Apparently there was a big rise in PD cases after the Spanish flu so it kind of makes sense.

Hopefully we'll get a better idea of whether there's a direct correlation at some point soon. The facts should speak for themselves.

I suppose any subsequent research would help scientists understand the mechanisms of PD a bit better, and that can only be a good thing.

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