For those who want to read it without hyperlinks, here it is:
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 20 mg at 8 AM. This is for depression AND it may be neuroprotective. They completed a trial on Lithium for PD in Buffalo.
4: L-Methylfolate 15 mg at 9 AM.
5: Vitamin C 1 gram at 9 AM.
6: 1 gram of Meriva Curcumin at 9 AM and another gram at 9 PM.
7: Berberine 400 mg 3 times a day (2 at 9 AM and 1 at 9 PM).
8: 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).
9: Oxytocin Nasal Spray 12 IU per nostril at 9 AM and then again at 9 PM.
10: Methylene Blue at 9 AM and again at 9 PM. I don't have a set dose, but it is a low dose. I keep it in a squirt bottle and have enough squirts to make my urine turn greenish. Please do your research. Methylene Blue is contra indicated for people on Levadopa.
11: Two cups of broccoli sprouts every morning at 10 AM.
12: Vinpocetine 30 mg once a day (with food or your body absorbs nearly none of it). Supposed to increase blood flow to the brain.
13: lactobacillus Casei Shirota (Yakult): Anti-bacterial, anti-fungus, anti-inflammatory, anti-viral, reduces cortisol levels.One bottle a day.
Either:
14: 600 mg Palmitoylethanolamide with Luteolin before bed.
Or:
14: 2.5 grams ground Nigella Sativa,1 teaspoon of bee pollen, 2.2 grams Ceylon Cinnamon, and 600 mg of Organic Licorice Root Extract 20:1 Powder and 600 mg of UM Palmitoylethanolamide. I mix this with unsweetened applesauce. These are all antibacterial, anti-fungal, and anti-inflammatory. I'm trying to treat my microbiome from mouth to gut.
15: 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.
16. NAC 1200 mg before bed.
17: Taurine 1 gram before bed.
18: Trying to entrain my brainwaves to 40 HZ Gamma I use a 40 HZ flickering light for about an hour a day.
19: 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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Bolt_Upright
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Rapid eye movement (REM) sleep behaviour disorder (RBD) is characterised by complex motor enactment of dreams and is a potential prodromal marker of Parkinson's disease (PD).
I dont know, there are many problems that come with PD and sleep problem is on that list but a minor one. its 1:52 am and here I am . Pain is the biggest problem now , and you will remember that the text books say that there is no pain with PD so ya dont get much help . maybe dried eye of newt from the health food store might help.
After awhile the pain really starts to bear down on you and I might be a bit grumpy and impatient with people who are well enough to go for a walk but who instead stay inside and whine about their fantasy illnesses on medical forums.
What textbook says there is no pain with PD? Pain is a major symptom of PD. Especially shoulder pain. On a recent Zoom call I asked how many people were suffering from shoulder pain and two thirds of the people raised their hands.
Thanks! "More severe REM sleep behavior disorder (RBD), a common sleep disorder in this disease, in initial measures predicted greater declines in DAT binding over four years."
Your comment speaks to the issue of diagnosis in parkinson's. The current diagnosis takes place at a point where a lot of the damage has already been done. A lot of people however sense a lot earlier that something is going on, and this limbo state is a terrible one because you can clearly tell that something is off, yet doctors have no tools to confirm or deny a diagnosis at this stage.
Even worse, and that is the answer you seem to resort to - most people who are on this path are diagnosed as being hypochondriacs. Surely, that applies to some proportion of the people, but there are some early signs that at least make a later diagnosis of parkinsons a lot more likely, one of them being RBD. With the recent news on a biomarker test, it might really open the door for this group of patients in getting more certainty whether their assumption is correct or not.
Regardless of whether you have the certainty or not, with any disease early intervention is better than late intervention. Everybody has to decide for themselves how to deal with this. Some might take the route in trying natural remedies, supplements and some might simply wait for the doctor to tell them what to do. I think both approaches are legitmate and one should not attack anybody for choosing their own way.
Well said. Thank you. By the time you get diagnosed between 60 and 70% of your dopamine producing cells are dead (or maybe they are just asleep). Most researchers believe the best chance to stop PD is before those cells are all dead. Stop the cascade of bad things.
I have not been diagnosed with PD. I have REM Sleep Behavior Disorder and number of possible PD symptoms (which have been getting better over the last 2 years). A lot of researchers consider RBD prodromal PD but I am working to be an exception.
REM Sleep Behavior Disorder is fighting in your sleep. Almost everybody that has RBD will eventually have PD or LBD. RBD is now considered by most researchers as prodromal PD.
Yes, I was diagnosed with RBD by a neurologist. He is the one that told me I would eventually have PD. He said I had about 10 years of good life left. I am trying to change this prognosis.
Through the friends I have made here and in other groups, through Marc's Zoom calls, I have somewhat of an idea of what it is like to have PD.
I am sorry my posts bother some people. Some people find them helpful. Please try to ignore them if you can. No hard feelings. Regards, Dave
I have PD and thoroughly appreciate Bolt’s research and input. IMHO, with your symptoms, you have every right to participate and contribute here. I feel better knowing you’re on the case. You continually learn, add and adjust like Boyd’s OODA loop. I’m rather surprised anybody would have an axe to grind about you posting a list of supplements given the time and care you’ve taken to assemble it. With explanations too. Thanks Bolt for all that you do here.
I don't have enough symptoms to be diagnosed. Sore left shoulder and arm, sore left leg, in the past few months I have seen a left hand tremor a few times. Sometimes get dizzy when I stand from sitting and have to hold onto something. Involuntary muscle movements. Face dandruff. I was having balance issues but not any more. I think I am ever so slowly getting better.
I could probably get a brain scan, but I believe in Schrodinger's cat. As long as I am not diagnosed I might not have PD. I don't want to set a reality that is flux and may move to my benefit.
I got my RBD diagnosis and went from there. I have had nothing but prodromal symptoms heretofore. Saw a new neurologist last week who specializes in movement disorders. Put through the usual battery of motion and verbal acuity tests, passing them all but a little tremor in my left hand on one particular motion challenge and my left leg and foot being a little slower. With the results of the DaTscan and the ever-so-slight tremor, he said we need to think about a Parkinson’s diagnosis, maybe not now but we’ll regroup in 6 months.
Are you throwing any Hail Mary passes to prevent progression? They say there is no better chance to stop it than at the beginning (but they also say there is no chance to stop it).
I went to neurologist #1 last November. I told him I had read about all the neurologists who would tell their new patients presenting with tremors, "If only you had come sooner, we could have done something!". I said "Here I am! Sooner! Help!" He said there was really no treatment because he couldn't diagnose PD yet due to lack of motor symptoms.
I'm taking Neuralli probiotic which has helped with sense of smell, dizziness and other prodromal stuff. Lion's Mane mushrooms. I don't really know what else I can do. Broccoli sprouts?
You should join our Zoom calls Marc is so kind to host. We talk about all sorts of alternative treatments. I am listening to isochronic beats as I type!
If I were “doomed” like you I would indeed do anything to LIVE. Perhaps try the MIND diet in combination with John Pepper-like exercises, limit your stack to a good B-vitamin complex (with P5P), drink black tea, get enough sleep and keep smiling! 🍀
Perhaps a misunderstanding. Bolt_Upright's personal page states that he was ‘doomed’ by the doctors. But it's true, in fact we are all this in a way… 🙂
Thats a great question...pixelpaul. someone like me on a state pension have to be very selective with what i can afford. I alternate a few essencial supplements, good food and exercice i can do at home with volunteering with my PD charities doing art etc.
If I recollect correctly, you are on OMAD and a believer in the benefits. Recently I wrote a thread asking how OMAD members manage their supplements intake considering all the constraints. healthunlocked.com/cure-par...
Can you have a look and give your take on it.. thanks
Hi, actually I am not on OMAD. I used to eat within a 6 hour window but I stopped doing that also. I am still gluten free and mostly lectin free. I am almost following the Specific Carbohydrate Diet also.
Hi Bolt thanks for sharing your stack, my husband with PD takes some of your supplements but not all. I’ve a couple of questions, why do you take NAC at night? My husband takes it in the day and really helps with the coughing that often accompanies his PD, and I take it when I have a chest infection/ cold as it is a mucolytic agent.
Did you build up to 20 mgs lithium orotate or just start at that dose?
My husband was never dx with RBD but he had it on and off for years before dx with PD maybe if we d had the knowledge and an inclination what he was in for later on down the line, a few life style changes/ choices maybe would have made a difference.
Hello Zella, I read somewhere that NAC helps clean the gunk out of the brain, and that the brain gunk cleaning time is when you are sleeping, so I figured night was the best time to take NAC. That is just how I figured. I know lots of people take NAC at other times.
For Lithium, I started at 5 mg, then I saw the low dose in the Buffalo trial was 15 mg so I went to 15 mg, then I saw the 15 mg dose in the trial did not seem to move the needle so I bumped to 20 mg. Probably a good idea to increase gradually unless it upsets your system. I have a High School degree and no medical qualifications.
Thanks. I tried Thiamine for awhile. It just did not resonate with me. Benfotiamine sounds interesting (but I am not looking to add anything at the moment). youtu.be/3oyHbpsMejg
Hi Gio. I have not been diagnosed with PD. I have RBD and some PD symptoms. I don't take any PD drugs and I don't take Mucuna either. You can ask me anything
I was wondering because drugs interact with supplements and vitamins with unwanted effects. Here is a site to do a search in this sense (at the end you will find all the clinical trials):
Thanks. I go on and off on Glycene. Currently I am off it. I posted about this 2 years ago: Time to Cut Glycine from my Stack? (this would include GlyNAC) healthunlocked.com/cure-par...
It is confusing, but basically I read something that said homocysteine does much more damage to neurons when levels of glycene are higher. Something like that:
"On the contrary, when glycine levels are higher inside the brain, more than 10 μmol/L, (and this occurs in clinical conditions in different scenario: brain ischemia, head trauma, or even protracted migraine cluster), even a low concentration of Hcy (i.e., Hcy = 10 μmol/L) could be an agonist on NMDA [70,71], exerting an excitatory action, and enhancing calcium influx."
My goal is to follow the Specific Carbohydrate Diet and also be gluten free and mostly lectin free. I finally gave up Pepsi (the kind with real sugar) a few days ago. My main beverage is black tea made with raw honey. I do break two SCD rules in that I use canned tomato paste to make my own honey catsup and I also have sour cream because I love sour cream and, as it is fermented, I don't think it is inflammatory. I also eat tomatoes, which along with my catsup contains lectins (which I try to avoid).
So for me, a typical day is:
A bowl of pistachios at about 9:30 AM.
2 cups of broccoli sprouts with mustard powder and oil and vinegar dressing at about 10:30 AM.
A couple of hamburgers on gluten free bread or hamburgers and cheese and tomatoes and sour cream and hot sauce (more lectins) or some combination of these things for lunch and dinner.
I started eating pork rinds recently. Not sure if I should be.
I also eat cut up tomatoes and sardines or tuna and avocados if they are cheap.
I got a bunch of pastries today from the Mexican grocery store. That was bad.
Mostly Specific Carbohydrate Diet combined with Gluten Free.
Thanks FD. It makes me happy to know I might be helping people. I have some karma to work off so every little bit helps.
Yes, I have talked to Rob of WhyRBD. Rob is nice. I think he is onto something. I learned about Lectins from this video: youtu.be/mjQZCCiV6iA
I always thought my poor impulse control was due to this little rule I made up in High School to encourage myself to be bold: "When in doubt, do". But maybe it is dopamine!
I take a gram of vitamin C a day with my 9 AM supplements. I think it helps the Niacin that I take (I need to nail that down).
It has been great seeing you on the calls. I am so glad you joined our group.
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Supplement stack help/ advice
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