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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SallyBeeBobs
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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.
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).
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.
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).
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...
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...
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.
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.
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
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.
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!
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 ?
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?
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!
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.
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.
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.
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.
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!
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.
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!
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
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 %.
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!
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.
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.
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
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.
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.
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!
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.
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.
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.
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.
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.
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.
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.
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?
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.
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.
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...
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"?
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.
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...
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
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
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!
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.
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
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.
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PD Paradigm shift: Brain-First versus Gut-First Parkinson’s Disease: A Hypothesis.
Informative article with links re PD and Gut microbiome
Buddhist Monks’ healthier gut-microbiome
