I’ve posted before about our trials with synthetic and natural levadopa but after reading Dr. Jonathan Sackner-Bernstein‘s essay, I wanted to shout a big “hooray”! I’ve long suspected levadopa was doing more harm than good and that the whole idea that PD being all about dopamine deficiency was in some way inncorrect.
For those interested, a recap of our levadopa experimentation:
After ten years of medicating with C/L and eventually at the maximum dose per day, he was experiencing major side effects like head dyskinisia, hallucinations, memory and cognition problems, delusions, compulsive behaviors, and barely understandable speech and severe ‘off’ periods. This was his state when I started as his caregiver. At first we both thought these side effects were symptoms of PD. As I began studying up on PD, I learned they were all side effects of C/L. I tried getting answers from his neurologist(s), only to be told there were no alternative treatments to the standard C/L and in fact, was advised he should take more.
Naturally, I grew suspicious. I found this forum and learned about mucuna and B1 HCL. B1 seemed slightly helpful but not miraculous.
We began the long road of titrating off C/L and on to mucuna. This definitely helped. He no longer gets these side effects, except some dyskinisia, unpredictable ‘off’ periods and occasional unclear speech, when he has levadopa.
After realizing he feels almost normal when he wakes up in the morning and reading about a HU member that tried delaying the daily start of medication, we decided to give that a go. Every couple weeks we delayed the first dose a half hour later. So whereas he used to start taking mucuna at 9 am, now he starts at 6:30 pm and takes another dose (2 and a half Barlowe’s brown Indian mucuna) at 8:30 pm and 10:30 pm.
This has been his routine for about a year. What I’ve noticed is, though he’s pretty low-key during the day, he’s sharper, speech is clearer, no dyskinesia, and no ‘off’ times- until he starts taking mucuna in the evening.
Mucuna does seem to help him (when he’s feeling ‘on’) with walking (using a walker)- he can walk faster, straighter and longer. He also seems more energetic with mucuna in his system, although when he’s feeling ‘off’, he can barely move at all and these off times happen at random times almost every night, only to be remedied by a double dose once it kicks in.
If you’ve gotten this far reading, thank you. I hope sharing our experience is beneficial in some way.
Now that I’ve read Dr. Jonathan Sackner-Bernstein‘s essay, we’re going to try once again delaying medication start by 1/2 hour every couple weeks, until he doesn’t take any at all, if possible. I wish there was an alternative treatment option to try but as it’s probably years off, looks like for supplements are the only hope.
The supplements he takes now are:
B1 hcl (2100 mg), B12, B2, magnesium threonate, lithium orotate, Biokult probiotic, D3/K2, melatonin, and boron. Thinking of adding B3, B6 and NAC, although I’m confused about which to try- N-acetyl l-tyrosine or N-acetyl cystine. Please advise if you know and if there are other supplements you recommend.
As always, we are very grateful for this forum and wish you all the best.
-Angie
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Excellent information in your detailed ceylon cinnamon report, park_bear- thank you! Looking forward to trying it out on him. I’ll have to get creative with this tasty ingredient. If he doesn’t like it, maybe I’ll make capsules. Again, thanks for this very good info!
This does not preclude adding B3 and B6 separately. Case in point my spouse uses a B-Complex, 500mg Niacin (B3), and 100mg B6 (P5P).
N-acetyl l-tyrosine is a precursor to L-Dopa. So it gives a dopamine boost.
N-acetyl cystine (NAC) is a precursor to glutathione - the most powerful anti-oxidant in the body. NAC also increases dopamine transporter binding, so theoretically you will have a better dopamine utilization.
Both are important.
Finally instead of using the trace mineral Boron as a stand alone, my suggestion is that you replace it with a full trace complex. Here is one that may have the amount of Boron you use.
Thank you CaseyInsights for your insightful tips! It is wonderful having help sorting out the vast array of supplements that might be beneficial and also makes me feel good about humanity!
Glad you found the tips helpful. Do feel free to message me on any issues you may have. I'll try to help.
Went through your post and after reading the detailed profile you provided on your charge, I doubt very much anyone else could have done a better job. But if you need a sounding board, I am here.
P:S: The problem with carbidopa/levodopa is that carbidopa destroys Vitamin B6. And when you become deficient in any nutrient all sorts of issues arise. He may still be deficient in this vitamin even if he no longer use levodopa/carbidopa.
The author concludes - For those individuals suffering from brain inflammation mediated by disease, medication or vaccine adverse reactions, vitamin B6 might just reduce the inflammation cascades and improve quality of life. Given its direct impact on tryptophan metabolism, vitamin B6 ought to be considered critical for brain health.
Boron - Yet another, I might should take. While on HU I have added lithium orotate and felt much better, but the 10 mg is more than I need, so I'm only taking 3 times a week (I take the lithium more for mood improvement than PD.)
I know! Surprising, right? I thought he really needed the levadopa to function at all but it turns out it’s not the case. In the daytime he takes one or two naps and this recharges/refreshes him enough to carry him through. It’s about 8:30 pm here now and I gave him his first dose at 7pm. He is so ‘off’ he can barely move right now so I had to give more mucuna (5 short-acting but fast-working Himalaya and 1 brown Barlowe’s bc this takes longer to get into the system and will take over when the Himalaya wears off). When he gets like this he has a really hard time swallowing too. The daytimes are almost always pretty easy-going, pre-levadopa and it’s quite obvious now that it’s not good for him. It’s ridiculous how drastic the difference is! But it takes time to make changes. We’ve tried faster than 1/2 hour delay every two weeks and it was rough-going. It’s addictive and withdrawal is to be expected unless we titrate very slowly. We’ll see what happens.
Hi everyone! I have read lots of posts and comments on here over the last 6 or 7 months and I have really appreciated everyone on here! I am 30 and am a caregiver for my 82 old stepfather who has been dealing with PD for about 7 years now. We have had him on mucuna since the beginning (we are huge natural medicine ppl) and that held him pretty well for about 5 years. After having a bad fall and UTI about a year and a half ago, he really started to decline. I was in school, pre-med, before covid hit and it ended up being good that I wasn't in school so I could help take care of him. Over the past year we found that when his cognition started to go, adding 1 cap of CDP-Choline and 1 cap Alpha GPC to his meds (3 times a day) made a dramatic difference! I read that they two are kind of like the opposite end donors of acetylcholine so that's why I added both. Then he started getting really depressed so I added in Rhodiolia Rosea (750mg in the morning and 325mg midday). Then I added B1 1000mg am and 1000mg and noon. I will try to cut this short but he has afib and we had our main daytime caregiver for the last year quit and take everyone on our team with her the day he had a minor afib event. He has been on a rapid decline ever since that happened about 4 weeks ago. I came across some info on B4 (adenine) and B1 being important for the electrical components of the heart... since I buy everything in bulk powder and press all his pills, I pulled out every B vitamin I had and made him a B complex formula. (B1 Thiamine HCl100mg, B3 Niacinimide 450mg, B4 Adenine 50mg, B5 Pantothenic Acid 550mg, B8 Myo-inositol 500mg, B9 Folic Acid 0.5mg, PQQ (pyrroloquinoline quinone) 20mg, ATP disodium 200mg, and D-Ribose 200mg). Ends up being about 3 #00 caps for 1 serving. He is taking 4 pills a day of that now. I also made up #1 cap size pilla with Huperzine A 20mg and Centrophenoxine 400mg mixture to give him better cognitive function by promoting acetylcholine and providing a cholinesterase inhibitor. I also have him taking Chanca Piedra 4 times a day to help get all the toxins out of his kidneys and liver. Boy what a difference within a few day! Even the hospice bathing aid couldn't believe it. He told me "I don't know what you're doing but whatever it is, it's working! I'm not even worried about him anymore!" My stepfather was a track and field coach for over 50 years and one of his former athletes came to visit on Friday and he was able to keep up with her and did phenomenally for the 4 hours she was here! This is someone who a week ago was hallucinating and staring at the ceiling all day; 90% of what he was saying made no sense at all and now he's back to being able to walk again, hold coherent and well spoken conversations again, no more panic attacks when he gets up bc of his heart. Anyways, I just thought this was a good post to share that information on. I will list below what meds he's on now:
6 am:
1 Green tea extract 300mg
1 Barlowes brown mucuna
2 Chanca Piedra
When he gets up:
1 CDP-Choline 250mg
1 Alpha GPC 300mg
1 Rhodiolia Rosea 325mg
2 Thiamine HCl (1000mg)
1 Danelion Root (for edema in his legs)
1 Chanca Piedra
1 B Complex
1 Huperzine/Centrophenoxine
1 Afobazole (Russian anti-anxiety)
1 PM:
1 CDP-Choline
1 Alpha GPC
1 Rhodiolia Rosea 325mg
2 Thiamine HCl (1000mg)
1 Danelion Root (for edema in his legs)
1 Chanca Piedra
1 B Complex
1 Huperzine/Centrophenoxine
1 Afobazole
1 Green tea extract 300mg
1 Barlowes brown mucuna
5 PM:
1 Melatonin 10mg
1 Kanna 200:1 extract (anti-depressant and relaxing herb with anti-anxiety properties too)
1 Afobazole
1 Chanca Piedra
1 B complex
8 PM:
1 CDP-Choline
1 Alpha GPC
1 Chanca Piedra
1 B Complex
1 Huperzine/Centrophenoxine
1 Diltiazem ER 120mg
1 Green tea extract 300mg
1 Barlowes brown mucuna
10 PMish:
Phenibut 300mg (for sleep)
The capgras has mostly resolved since we put him on 1000mg of Niacin 3 times a day for several months but if it flares I give him 1000mg and that seems to put it out.
I also will give him a dose of mucuna in the middle of the night if he is still struggling to sleep.
I have also added in 5-10grams of D-Ribose throughout the day (in his protein shake, orange juice, or prune juice) bc it helps reverse heart failure.
Everything has completely turned around after I started him on the B complex I made, the Huperzine/Centrophenoxine, and the Chanca Piedra. Hospice was giving him less than two weeks a week ago and now he's back almost completely after less than a week of adding those things in.
I know he takes a lot of pills but we all think it is worth it, even he does. I have tinkered with a lot of stuff over the last year but for him this seems to be the right fit at the moment. His depression level is way down, his cognition has improved, his energy is up, he's sleeping better, he is moving better, and he doesn't have the crippling anxiety with panic attacks anymore.
Anyways, I hope some of what I shared here will be helpful to someone else as much of what everyone on here has shared has been extremely helpful to us!
Thank you and blessings to you! I much appreciated your comments on this thread... great information! While I was doing some reading on BHT (for lipid enveloped viruses) I found a guy who had tucked in his book on BHT some interesting information about alzheimers. He claims that it is caused by mercury getting in and shoving out the glutathione in the body. That is the catalyst for the entire disease pathology in his opinion. That actually got me thinking, "I wonder if there is some kind of mechanism similar to that with PD?" My perspective on PD comes more from PDD/LBD because of my stepfather but it made me really wonder about it. So when you mentions NAC above, that got me thinking because when we initially suspected a UTI, I was shoveling NAC into him all night when he would get up to pee. And giving him liposomal reduced glutathione in his OJ or prune juice everyday and if he got up for a snack at night. I have kept him on the glutathione but not the NAC. I was not aware that NAC had the affect you mentioned on the dopamine system. I think I may add that in again... thank you for that wonderful information!
Thank you for your initial post! I was not aware of the concept of delaying the mucuna before! My step father has started to have trouble with swallowing and the speech therapist told us that he needs to wait 20 minutes after taking pills to lay down so in order to keep his mucuna on that 7 hour schedule, we had divided up his am meds. However, with our new daytime caregiver, who doesn't force him to get up at 6 am even if he doesn't want to, now he sleeps in almost daily. (Our previous gal came from institutional caregiving and was very set on pushing him to keep to her schedule even though she only worked in our home and he was her only patient.) After your post, I started to ponder the idea of delaying his mucuna, especially since he usually takes it and goes back to sleep immediately. And even on the rare occasion I have given his am dose an hour late because he is sleeping so well, it hasn't produced any noticeable problems. I had tried giving him some 9-ME-BC because it can actually regrow dopaminergic neurons and the first 4 or 5 times I gave it to him he did quite well but the next couple of times I tried it, he struggled a bit the next day. I had to abort that test run because our previous caregiver would just lose it on my mom yelling, "But she's NOT A DOCTOR!!!!!" Haha! Made my mom and I crazy because I would send her tons of literature but she never read it and would freak even when we reduced the excessive amount of Tylenol he was on way after he had recovered from a fall. I'm wondering after just glancing at that essay you mentioned if the 9-ME-BC gave him too much dopamine because we still gave him the mucuna too. I wonder about the efficacy of using 1 or the other because the 9-ME-BC has a very long half life, thus you should only take it once a day. Having been on welbutrin myself, I know what it feels like to get all the dopamine flooding in my brain and so I've experimented with a lot of stuff on myself. The 9-ME-BC actually got rid of my depression for good but when I tried PRL-8-53, it felt just like I had taken my welbutrin. PRL-8-53 is a dopamine agonist, and from what I have read online it seems to work well for PD. If a lot of problems are caused by dopamine toxicity, maybe using something like PRL-8-53 instead of giving a dopamine source might actually work better. Anyways, sorry that was long winded! Thank you for starting this thread and for the information you shared! Lots of good stuff on here!
P.S. I am in the US and there are quite a few things I mentioned in both of my comments that are considered "research chemicals" here and "not for human consumption." I get a lot of stuff from various nootropic companies... I don't know where everyone else is located so I don't know if those things are legal or available there.
Angie thank you so much for sharing! I also am suppliment only since my dx last year. I take very much the same, except I am also taking suppliments for chronic fatigue and low testosterone as well.
Ironically one of the reasons I never started a Rx med was due to cost, and then realized through a lot of trial and error correct dosages and timing (still a work on progress).
Keep up then great work, they are lucky to have you as their caregiver!
Thanks for the encouragement! I forgot one more he takes- 1 Tbsp Mannitol every morning. The positive changes to his handriting and sense of smell are due to the Mannitol.
I am also amazed he can get by without taking anything until evening! My HWP is not good in AM. PD is different in each person and what works for one person may not work for another. The list of supplements some PWP take is extensive and like medications supplements can interact with other supplements or medicines. That being said my HWP has done the IV glutathione, not much of an improvement. We have started the B1 therapy, but his PD symptoms are more nonmotor right now, so not sure how much that helps. He also has a significant lumbar spine issues (had surgery) so it is difficult to differentia between what is causing his leg pain. The back doctor blames PD and the MS says its your back. Hence patient in middle with no treatment.
Many PWP on HU take mucana with great success. I found a good supplement called DopoaBoost that has the necessary green tree extract to help the mucana cross blood brain barrier. It also has n-acetyl-tyrosine, quercetin and B6 (p5p). I am going to addon to his C/L which he takes 4x day rather than up the C/L, maybe he will need less C/L over time. Well see. Going to add lithium orate as so many see to have great sucess with it.
If anyone comes across supplement or advice for pain please post!
Hello Sydney75 ~ My HwP does not have constant bad back pain. However, when it does kick up, such as last fall when we stacked 4 cords of wood, we used some CBD oil that someone recommended from this forum and it did the trick. The company is Sunshine CBD Oil. It is a sublingual application.
You didn't ask for the rest of what I'm writing here so you don't have to read on if you don't want to.
I also have my HwP on DopaBoost and we have been very pleased with the results. I started him on 2 pills/day then went to 3. I didn't think it through very well because I was giving him all 3 in the early a.m. His tremor was very bad. Then I finally thought to spread them out throughout the day ~ one with each C/L dose. The improvement was dramatic to put it mildly!!! I figured I was dumping too much dopamine into his body in the morning and then there wasn't enough later in the day.
Then it seemed like something was going on with his tremor so I thought maybe the dose was too high. We eventually have settled on a dose of ½ pill early a.m. and ½ with his mid afternoon each with his C/L. This seems to be working for as. However, as you mentioned we are one of the ones that have him taking a ton of supplements.
You didn't ask for this either, but I have recently put him on acetylcholine in the form of ALPHA GPC w/Bacopa, which supposedly helps get the choline through the BBB. Recently since starting the choline he seems better. Nothing that I can put my finger on, just seems like he's thinking better/clearer and he seems "sparklier", a brightness in his eyes. I want to attribute it to the ALPHA GPC.
Thanks you answered my question about taking C/L concurrent w dopamine boost. Found a CBD gummy w 5% thc not considered medical pot, seems to help him sleep better. Taken at night. Quality supplements are $$ he is still working with more breaks, keeps his mind occupied.
So true how different this disease is for each individual. My client also had spine issues- he had 5 surgeries, poor guy! The good news for him is the last one took care of the pain. So sorry to hear your HwP has pain. As if PD wasn’t bad enough! It is really hard to tell whether to blame the spine problems or the PD, I know. Good luck. Wish I had pain solutions to offer. I don’t know if Kratom is legal or available where you are but I’ve heard it works- but don’t have personal experience with it.
Night - 100 mg of B6 ( P5P - pyridoxal 5' phosphate)
Carbidopa destroys B6. So you do need to supplement B6 or you will have 'non motor problems' - the leading ones would be anxiety (B6 is needed to convert Glutamate to GABA) and depression (B6 is needed to make serotonin - the feel good chemical and also critical for bowel movements).
I have had to fall back on carbidopa/levodopa therapy as Dopa Boost is not cheap and the insurance company does not pay for it, despite its effectiveness. I also encountered some delivery issues at the start of the year.
Carbidopa/Levodopa is readily available - original (Sinemet) or generic. And I like Dopa Boost. Thus this unusual combo.
If cost is not a problem, then you can go full Dopa Boost. But if you take any carbidopa/levodopa tablets you will need to supplement with B6, the bio-active version (P5P). And even with Dopa Boost a full B-Complex would be helpful.
Key contributions on B6 therapy from park_bear here.
Levodopa Medications, Vitamin B6, and the Hinz protocol
Thank you so much for your inspirational post! I am just beginning to transition from c/l to mucuna. Had tried once before but felt the mucuna was giving heart palpitations. I will be re-reading your post many times. God bless!
I’m so glad to hear you found my post worth reading. Thank you- I overcame my shyness and it wasn’t easy, even though this is anonymous. Good luck with the transition- it took at least a year for us.
May I check what dose of Mucuna you’re using? I have started today for the first time 800 mg tablet converting to 120 mg L-dopa. Having been on dopamine since 4 years , I don’t think it’s helpful.
Hi- we just went up to 3 capsules starting in the evening, every 2 hours. That’s equivalent to 780mg per dose. We had a neurologist appt recently and the dr didn’t realize that mucuna is not as strong as carbidopa/levodopa so she told us we were taking too much and we had a terrible couple weeks of under-medication. So now he’s back up plus a little more, according to the advice from the company that we get the mucuna from, Barlowe’s, who said eventually you need to increase the dose if it’s not working. He was right! He’s feeling good again. So I would up your dose until you find the happy point. If you experience dyskinesia that means you’ve taken too much; if you’re having having movement problems take more until you find the right dose. Good luck!
I am so happy I spotted this post tonight. I take 2 Barlowe every 2.5-3 hrs and found that they were not as effective as a month ago. The first 2 doses of the day work better than theater doses. I am going to try 3 capsules with one of the later doses....maybe I will be able to join my family for Easter now !
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Agonist versus Levadopa
Has anyone with PD changed medication, when the initial one was not working? 
B1 Thiamin
When does supplementation become toxic or counter-productive?
Mannitol and B1: What’s going on?
