I have not been diagnosed with PD. I have REM Sleep Behavior Disorder, a sore left shoulder and sore left leg, random twitching, and depression.
1. Follow the Solar Cycle: I get up when the sun comes up. Got to bed no later than 11:30 PM. Wear blue blockers after 8 PM. (due to depression and crappy weather I have not been getting up with the sun lately. I will try harder).
2. Specific Carbohydrate Diet: Has been shown to normalize the microbiome.
3. Circadian Diet: Only eat when the sun is out.
4. Intermittent Fasting: Only eat during an 8 hour window. Usually sometime between 10 AM and 6 PM.
5. Broccoli Sprout and Daikon Radish sprout smoothie. Mix in a little oil and vinegar dressing: Drink it between 8:30 AM and 12:00 PM so I am boosting Nrf2 while my circadian rhythm is on the upstroke.
7. Dr. Matthew Best Prebiotics and Probiotics for Women. It has (among other things):
- Lactobacillus acidophilus
- Lactobacillus reuteri
- Bifidobacterium bifidum
- Lactobacillus fermentum
8. Berberine: 400 mg twice a day. Neuroprotective.
9. Vinpocetine: 30 mg twice a day (with food or your body absorbs nearly none of it). Supposed to increase blood flow to the brain.
10. 2 teaspoons of Brewer's Yeast on my food once a day.
11. Niacin Rapid Release 150 mg in the morning and 150 mg at night. I ran out of time released and decided to switch to the rapid release twice a day.
12. CBD Oil: Right before bed.
13. Exercise: 20 minutes on the treadmill. Long walks when the weather is nice. (Due to depression and crappy weather I have been failing here).
14. L Methylfolate 15 mg (for depression).
15. Lithium Orotate 15 mg. This is for depression AND it may be neuroprotective. They are doing a trial on Lithium for PD in Buffalo.
16. Magnolia Bark Extract 200 mg (90% Honokiol and Magnolol) at night. This is supposed to help with REM Sleep Behavior Disorder and be neuroprotective.
17. S Boulardii (to kill pathogens). I don't take this every day, but I think I should.
18. Mixture of 1 teaspoon ground Nigella Sativa, and one teaspoon Ceylon Cinnamon (my teaspoons are heaping), and 600 mg of Organic Licorice Root Extract 20:1 Powder and 600 mg of UM Palmitoylethanolamide. I mix this with some peanut butter and raw honey and eat with a spoon twice a dayin the middle of the day. These are all antibacterial, anti-fungal, and anti-inflammatory. I'm trying to treat my microbiome from mouth to gut.
19. NAC 1200 mg with Taurine 1000 mg: 1 hour before bed.
20. 600 mg Palmitoylethanolamide in the morning and 600 mg at night. These are "Life Extension Comfort MAX – Honokiol & Pea for Nerve Support & Discomfort Relief – Gluten-Free, Non-GMO, Vegetarian - 30 AM Vegetarian Tablets - 30 PM Vegetarian Tablets". So 2 pills a day and the evening pill has 180 mg of Honokiol in it.
21: Methylene Blue 5 mg in the afternoon.
So I am at 21 items now. 4 of them lifestyle changes, so 17 supplements. You can see I am taking two different forms of Palmitoylethanolamide. The life extension is not Ultra Micronized but I like that it has AM and PM doses and has Honokiol in the PM dose. I also take the Magnolia Bark extract as that has Honokiol AND Magnolol and gets my daily dose of Honokiol and Magnolol up to almost 400 mg.
Except for depression I am doing pretty well. I hardly ever have RBD episodes. My skin on my face looks better (not seeing any seborrheic dermatitis on my face). My neck used to be sore all the time and it is mostly fine now. It's just the twitching and sore left shoulder and leg now. And the depression, but the depression is really a separate issue. I have made serious mistakes in my life.
Edit June 3rd 2022: Yikes! According to RXlist.com you should NOT take Methylene Blue and Levadopa: rxlist.com/drug-interaction...
"methylene blue oral and levodopa oral
methylene blue oral and levodopa oral both increase affecting serotonin levels in the blood. Too much serotonin is a potentially life-threatening situation. Severe signs and symptoms include high blood pressure and increased heart rate that lead to shock. Combination may cause severe harmful effects. If methylene blue must be taken, stop taking the serotonergic drug until 24 hours after finishing methylene blue or after 2 weeks of observation for side effects."
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That is a phenomenal stack! I wish I could tolerate and take all of that! Have you tried red light therapy for your depression? Or checked to see if you need thyroid hormone? Red light and making sure my thyroid is supported helps my depression.
Thanks. I have Hashimoto's so I am on thyroid medicine. I have a red light. My depression is more situational than mental. Hopefully I will get a next life and make better choices.
Yes I understand situational also. My husband passed away from covid two weeks ago. I hope you can forgive yourself for your mistakes, everyone makes them from time to time
Gigi, hugs and empathy to you. I’m at a loss for words but that was my first reaction. Hugs and empathy. And, you just reminded me to appreciate my Hubby more. Thank you. And thank you for being here and sharing with us. ❤️
Yes he got Covid from a co worker. He was in ICU on a vent for almost 5 weeks. They put him on Remdesivir, heparin, antibiotics and steroids right away. I got Covid from him and I felt like I was hit with a train myself. His oxygen levels went down to 87, mine never went below 94. So he went to ER and was admitted and isolated. No one could see him for two weeks. By that time he was ventilated. I begged doctors to give him melatonin and they wouldn’t. They got irritated at my questions and I feel took out their irritation on my husband, so I started keeping my mouth shut more. I felt helpless. He was not vaccinated. He was very healthy. His friends at work all said he worked circles around them. The doctors said he had viral pneumonia from Covid and then developed bacterial pneumonia on top of that. His lungs were hit hard and they never recovered.
So sorry to hear this. I lost my Dad to Covid in January last year, and still miss him. Having been super careful, and triple vaccinated my wife and I caught it on a return from a trip to the UK where all the precautions had been dropped, but , like for so many, it was little more than an inconvenience (assuming no long covid effects). When its someone you love you realise those enormous numbers you read of dieing from it are loved ones, not numbers. Lost for words. Much love
Thank you, I’m sorry for the loss of your Dad. Yes we wore masks everywhere and wiped down purchases etc I’m still masking but no one else in my area seems to be. Your kindness is such a comfort ❤️
Had you heard about Ivermectin and the vitamin protocol for COVID? In case your doctor can prescribe Ivermectin, it would be a good idea to have some at home, IMHO.
Well I’m not as disciplined as you, wish I was. I have hashimotos too so I take NP thyroid daily.
I take various herbs and vitamins in a rotation. Reishi, turkey tail, dandelion, selenium, vitamin D and k, b complex, taurine sometimes, HMB sometimes, starting creatine to increase muscle strength, b12, biotin to get b12 into the cells, red light, homeopathy, willow bark. I’m sure I’m forgetting something but that’s a start lol
Folate also helps in the process of methylation in the body which produces dopamine in the gut or something like that ... if I understand correctly..It's also said that eating red meat causes cancer .....
At present, I am more concerned with my depression than any risk of cancer. On the other hand, I am always looking to cut a supplement and my depression has not improved since starting L-Methylfolate. I am considering cutting this supplement just to get my stack down.
This article has a scary title, but basically says it is effective for depression, but maybe not for bipolar disorder.
"L-methylfolate is the only form of folate that can cross the blood-brain barrier, where it plays an essential role in the one carbon cycle metabolic pathway that is required for the production of the monoamines serotonin, dopamine, and norepinephrine."
Have you thought about having a genetic test? Try a functional doctor and ask for an opus23 analysis. You have to provide saliva test to ancestry.com and 23and me then opus analyses it. We found it very interesting and very predictive but you have to go through it with a trained person to explain it. They give you a list of which SNPs you have notable defects in and what to avoid and what to take. Interestingly my hubby’s one said avoid curcumin which is in turmeric! I think if you are taking so many supplements it could be good to check there aren’t any on the avoid list.
most of the Natural plant supplements work by acting on eg the mao or the dopamine or seratonin pathways so you don’t want to be inhibiting something where you already have a gene snp which naturally inhibits that pathway.
6 tsp vitamin c (high quality tho and its not just ascorbic acid, vitamin c has 3 additional elements to be classified as truly close to naturally occurring vitamin C)
Folate x1
Zinc x1
Multi B vitamin x1
2x Byron White formulas x2
6 aqua hydration drops 2x3
Under tounge trauma spray 2 pumps
5gms magnesium x1
5mgs creatine x1
Meat and vegetables and fruit x whenever and however
On one hand I can't, but then again, I do slowly rotate things in and out so I think I get some idea. For instance I was really having a problem with seborrheic dermatitis on my face. That seems to have cleared up since I started PEA and Methylene Blue. Fingers crossed that is a clue.
Interesting list Jeff. Thank you for sharing. I had been thinking of trying a Tens unit on the vagus nerve too. I am using the binaural beats every day. No idea if they help.
My husband is taking some of the supplements already mentioned. He’s sticking with those for the moment. We tried to add in Mucuna to his stack but he felt really sick after adding a small dose to his regular meds, So that is now out. He keeps going with his coronet hat, replacing the mens shed one.
Your determination is so admirable! Thank you for all the research you do. It helps us all! The non motor symptoms can be far more challenging. I trust and pray you will find the right combo for you
Wow, sounds like you are really taking care of yourself! Well done! I am happy you have found some relief for some of your symptoms through lifestyle change. I hope you find relief for your other symptoms!
Thank you PalmSprings. Sadly I was chased by alligators last night while crossing a body of water so the RBD is not as under control as I hoped. And my shoulder is still as sore as ever.
But my skin on my face looks good and my sense of smell seems normal, so I hope I am trending positive.
I'm another person very grateful for all the research you do, Bolt. My 68 year old husband was diagnosed 4 years ago with tremor-dominant PD but he'd had tremor and loss of arm swing for maybe 2 years before that. So far he is only using Azilect and, though the tremor has gotten worse, he isn't much changed in terms of stiffness or slowness or balance or anything else. He has been using PEA for a few months and just shifted to the PEA/Honokiol that you use. He also uses Curcumin, Mg threonate, Vitamin D plus K2, Vitamin B12 from time to time (just shifted to Adenosylcobalamin 1000mcg) and the Coronet once or twice daily for the past few months. I'm thinking of getting him to add TruNiagen to his stack because of the study out of Norway, and I'm going to look into broccoli sprouts and sulforaphane that you've alerted me to.
I think berberine is the key to better skin. Hubby took it with allimed (garlic) but naturopath told him to cycle it. One week on one week off with a good probiotic on alternate weeks.
Hi Bolt, Thank you for the post. Before I list my supplements I want to pass onto you this YouTube video that got me into supplementing lithium orotate. You may have seen it already, it’s called, “Better Mental Health with Natural Remedies. “ I am currently taking C/L 25/100 3x /day with Pramipexole .5mg 3x/day. With that I take Dr. Matthews Probiotic, Befotamine 300 mg 3 x/ day, B2 400 mg 2x, Curcumin C3 500 mg, CoQ10 100 mg 2x, Resveratrol 605 mg, vit.d 10000 iu, Enduracin nicotine acid ER 250 mg, Lithium Orotate 10 mg PEA Comfort Max, Carlson fish oil, NOW Adam multi, Be Calm magnesium, Green banana powder,Potato starch, Ceylon cinnamon, CBD, Melatonin.
That is a great stack! I had let my banana powder fall off my list. That looks like a great Niacin choice. I like the ones that just use wax to make it extended release.
Yes, that Better Mental Health with Natural Remedies is where I learned about Lithium being good for the brain: youtube.com/channel/UC9i5ZT...
Does the green banana powder and potato starch affect your digestion? I’ve been contemplating trying one but worry about slowing digestion. Do you take them for SCFA production? Our protocol has many similarities.In addition to Be Calm mag I take Mag Mind by Jarrow and NAC for glutathione.
Yes I think it helps with digestion for me. I forgot to add the TBSP of Metamucil I take. All the powders go into my breakfast smoothie I make with a banana and blueberries with 1/2 scoop of veggie protein. I can attest to when I don’t follow my routine exit time is way off and more difficult (constipated). My reason for the starch powders is Short Chained Fatty Acids. The banana peel adds about 8 grams of fiber also.
RS, as a dietary supplement to increase fiber intake, is safe and well-tolerated in PD. RS supplementation partially restores fecal SCFA concentrations in PD + RS without clear-cut changes in the gut microbiome that were attributable to the intervention. Alterations at the transcriptome level (that were not captured by our approach) might explain the intervention associated significant increase in fecal markers in the PD + RS group.
In view of the good tolerability of RS, we suggest long-term studies with RS. These studies should also aim at clarifying the underlying mechanisms for the supposed anti-inflammatory effects. Based on the assumption of an RS-associated anti-inflammatory effect, these studies should also investigate whether RS supplementation is able to modify the clinical course of PD.
Thank you! I do many of them, especially lifestyle changes (circadian reset), but also take melatonin.. I’m not quite sure if better to supplement or leave it to endogenous enhancement with blue blocker and so on.
Geez, I left out the MCT coconut oil I squirt in the mixer also. How is the Methylene Blue working? Any noticeable change or feeling since you started taking it?
Now that I think of it, of the 8 days I have taken MB I have had RBD episodes 3 of those days. Hopefully a coincidence. I was all the way down to one episode in the last 30 days before I started MB.
Even though antioxidants have been considered beneficial, a number of clinical trials have shown harmful effects. The most extreme results evidenced increased mortality in individuals taking antioxidant supplements. Although the mechanisms are not explained in those trials, the results suggest that disrupting the delicate balance between antioxidants and reactive species produces antioxidant-induced stress, if the antioxidants overwhelm the physiological production of reactive species.
Though these conclusions remain speculative, the best advice would be to ingest antioxidants from food sources rather than from self-prescribed supplements. The most probable way of increasing the endogenous antioxidant defense would be by practicing moderate aerobic exercise, as an every day healthy routine. Gene polymorphisms, which condition endogenous antioxidant deficiencies, would be the exception to such advice."
I have decided to try to get from natural sources, where at least I might get some of the natural buffers (for lack of a better word) and try to stay away from synthetic compounds. Buffers - possible additional beneficial compounds (at least not possible isomers not found in nature). I should clarify, I meant extracts and stuff obtained from natural sources...
Are you doing the broccoli sprouts? Those are natural. I just had my broccoli and daikon radish sprout smoothie (with a radish and tomato and some hot sauce. I hope I am not ruining it).
Bolt, do you post your research anywhere else accessible? Is there another place to see what you are researching?
Bolt,Have you ever checked your eye tracking whether your visual tracking works correctly, if not I would recommend to check this if you have balance issues. If eye tracking improves, it helps hands and eyes coordination as well. If you skip words or lines when you read a book then you probably need to work on your eye tracking. Kia
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