So I updated my stack. What's in your stack? Does it seem to be helping? Success Stories are Welcome.
About 6 weeks ago I cut Methylene Blue out of my stack. My tongue was getting really sore for a long time so I stopped. I don't think this is a side effect of MB, but it has been 6 weeks and my tongue is better now.
I noticed the last time I changed my stack was in March 2023. Not that I know anything, but my philosophy is that it is best to establish a stack that you believe in, and stick with it for a long time if you can. Not that I won't drop something like a hot rock if I get new information that makes me think something is doing more harm than good, but just that I think if anything works (a big if), I think it needs a long run.
This is my latest stack. I have not been diagnosed with PD. I have REM Sleep Behavior Disorder, a sore left shoulder, sore left leg, not the best balance in the world (it never was great) and some involuntary muscle movements (nothing big or repetitive. A few times a day).
Updated 02/25/2024
1: I am gluten and mostly lectin free now.
2: Follow an anti-inflammatory diet. The Specific Carbohydrate Diet (SCD) has been shown to normalize the microbiome.
3: Lithium Orotate 25 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.
16: Trying to entrain my brainwaves to 40 HZ Gamma I use a 40 HZ flickering light for about an hour a day.
17: Trying to entrain my brain to 40 HZ Gamma I listen to Binaural Beats and Monaural Beats for hours a day. I use these $35 Bone Conduction Headphones to listen to the beats. They do not cover your ears so you can walk around and listen to beats and still be able to hear people and watch TV.
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Do you do any exercise such as fast walking 3X weekly? Just read some research showing that walking helps regenerate neurons in the brain. Shall try and find the link again.
I am experimenting with using a sedentary lifestyle to improve my condition. At least in the winter. In the warmer weather I get outside every day and work on my property, but no program except 1 to 2 mile slow walks to take pictures a few days a week.
I take 400 mg (2 x 200 mg) at night before bed. As to potency, Magnolia Extract has both Honokiol and Magnolol. In my research I could not figure out which of these to ingredients was the most beneficial, so I settled on this Swanson brand that says it is 90% Honokiol and Magnolol. That 90% might be 5% one and 95% the other, or 50/50, I don't know, but since I don't know which is better (if either) I am happy with the formula: swansonvitamins.com/p/swans...
thanks for sharing . Very interesting! You’re doing lots of great things.. I have a few questions.
So how are you doing? Have you noticed any specific improvements with each item in the list? How long have you been doing this? What is your age? You did not mention exercise, what are you doing for exercise -?it’s really important for slowing down the disease
How am I doing: Pretty good. I have not been diagnosed with PD. I was diagnosed with REM Sleep Behavior Disorder in April 2021 and at that time I had a really sore left shoulder and arm and leg (I had to switch my mouse to right handed), some balance issues, seborrheic dermatitis on my face, random muscle jerks and an occasional tremor in my left pinkie.
My left shoulder is still a bit sore but worlds better. Everything else is pretty much resolved. I have occasional twitches or jerk, but just a couple times a day.
Not to jinx myself, but my RBD is much much better. Only 2 episodes in 2024 so far (and one of them I am not sure of).
I don't know if something on the list is helping or if this is just the normal waxing and waning. If it is something I am doing, I don't know what it is. I do a lot of things: rbd-pd-protocols.blogspot.c...
I have been doing everything on the list for at least 11 months. I am very consistent. I retired so I could focus on this stuff. A lot of the things I have been doing for 2 years now.
I am 64 years old in 2 weeks.
I do not exercise very much. I take casual walks when the weather is nice and when the weather is warm I work on projects on my property. I built a really cool deck and stairs all by myself last summer: youtu.be/l_ULQGnhonE
Yes, I have read about exercise and its benefits for PD. It's just not my thing. I do eat really well except for a nasty Pepsi (only with real sugar) habit.
Context: my mum is 84. PD dx 2009. Vascular + likely Alzheimer's dementia dx 2008. Uses rollator indoors for trips to bathroom. Wheelchair outdoors.
No meaningful solid food (dyspahgia + gastroparesis). Most all calories through thickened liquids (milkshakes + water with added fruit puree). Some yogurt with supplements mixed in. c 1250 calories and weight stable (at a very healthy weight).
A far from ideal diet - sugar heavy and lacking lots of good stuff - but I know from experience that trying to get her to drink eg a smoothie of greens will backfire: it will slow consumption, compromise her calorie intake and hydration levels, and become a point of contention. The PD and demented brain loves sweet stuff and not much else.
Respiratory function: Bromelain, Now Respiratory Care Probiotic
Digestion/constipation: Mag citrate, Jarrow's Bowel Support + ( Laxido (macrogol 3350) and Motilitone (approved Korean herbal prokinetic))
What works? I can say that citicoline, mag citrate, melatonin (in terms of helping sleep), and B1 clearly and very definitely help (my mum).
Most of the rest one takes on the assumption that good is being done given the weight of evidence.
Is D-mannose working? Can't say, but can say that the evidence suggests it's a decent UTI prophylatic and can say that mum has not had one UTI.
Is the GSE working? Can't say, but can say the evidence suggests it's helpful for vascular function and can say that mum hasn't had a stroke and her vascular function appears pretty good (all things considered).
NOTE: My Neuro says my progression seems lower than typical PD patients (knock on wood).
Diagnosed 8 years ago and still pretty much functioning without significant problems and without any increase in meds (knock on wood again).
I have always wondered if it wouldn't be useful for PD patients to share their relative rate of progression along with their stack.
For example, PD progression is significantly slower than average, slower than average, average, faster than average, or significantly faster than average (based on Neurologist estimation or testing). Another measure might be the current PD stage of progression and how long it took to get there.
While one would probably not get strong statistical power from such a rough retrospective, there still may be some insights to be gleaned from even broad and imprecise data (and results).
For example, which supplements seem to be associated/correlated with slower progression and thus should be looked at in more detail.
Additionally, perhaps adding to our stack data -> why we chose to take what meds or supplements. Such as, -> there was, or is a clinical study (or medical journal article) suggesting potential efficacy, etc. To be honest, I have forgotten why I chose to take many of the supplements.
Yeah, I need to write down why I take things (I forget why eventually).
So Berberine:
1: It suppresses viruses, including EBV. I think viruses may play some role in PD (I have not been diagnosed with PD. I have RBD and a sore shoulder and some other troubling symptoms): healthunlocked.com/cure-par....
2: Berberine fights funguses and other infections. 3: Berberine normalizes the gut microbiome. 4: Berberine is effective for iron chelation. healthunlocked.com/cure-par...
I think I missed something. If you check out those link there are also cautions about Berberine. I still take 1200 mg a day. swansonvitamins.com/p/swans...
Thanks for the reply. When Ozempic hit the news for weight loss, I thought I heard people talking about how berberine was the "natural Ozempic" and sales went way up on it. With the diabetes drugs showing that they may slow down motor symptoms, I wondered if Berberine might mimic the diabetes drugs. My thinking could be way off on it but it makes me curious.
So... at night, about an hour before bed (which is 2 AM to accommodate my cat) I take my nighttime Curcumin (1 gram), Berberine (600 MG), Nicotinic Acid (1 gram), and (this is not listed on my stack) either a fish oil capsule or a vitamin D. I alternate those. And I also put my 250 HZ pulsed at 40 HZ Isochronic Tones on for 50 minutes.
Then right before bed I have the Magnolia Extract(400 MG), NAC (1200 MG), Palmitoylethanolamide with Luteolin (600 MG) and Taurine (1 gram).
I ran out of Oxytocin Nasal Spray a week ago and have not bought more. It's kind of a nuisance so I am seeing how I do without it. I kind of think my diet is the most important thing I do, but I also believe some or all of supplements are helpful too. Especially the Berberine and Nicotinic Acid, and... some of the others also. Who knows.
As a reminder: I have not been diagnosed with PD. I have RBD and had some PD symptoms which seem to be slowly slowly slowly fading. My neck and left shoulder are still sore, but much better than they were 3 years ago.
I think it is important for a person to know why they are taking a particular supplement and have an overall theory of what they are trying to do. If you ever want to chat about it, you could join one of the Thursday Zoom calls MBAnderson hosts, or PM me if you want to talk one on one.
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