If you do, how much B1 do you take? (Those who don't take B1, please ignore the first question)
How much L-Dopa do you take per day?
What are the supplements you take per day?
What are the timings for the above?
If you do, how much B1 do you take? (Those who don't take B1, please ignore the first question)
How much L-Dopa do you take per day?
What are the supplements you take per day?
What are the timings for the above?
I. I Take 10 CL 25/100 daily one every 2 hours from 7 am to 7pm.! Don’t take B1 except for what’s included in my vitamin B supplement (1.8 mg)
I take 8 C/L a day [(3) 5am,(3 )11am, (2) 5pm]. I also take B1 (100mg hcl oral, every morning). I do recommend B1 Therapy for PD and Dap1948 's Facebook Group.
I did have a setback with B1 healthunlocked.com/cure-par...
I’m trailing a new B1 plan 😂. I followed the B1 protocol through sublingual to oral and had the need to keep reducing my dose. I was on 1/4 of 100mg twice a week. Circa 50 mg/week. While narrowing in on my sweet spot, I stopped my daily B complex 100% RDA.
Before I was diagnosed, I used to take a daily Berocca and stopped that while I was using B1. I felt I was sensitive to B1; I could sense/taste it after dosing and didn’t need a 2-week break after OD symptoms. I just stopped it for an extra day or two. I’m convinced it’s working for me. So around a month ago I switched from B1 oral back to a Berocca (which has 15 mg of B1). After a few days, I adjusted to 1/2 a day (more or less 50 mg/week). That seems to be my sweet spot.
I take Mucuna. I took 2 then up to 5, now 15% L-dopa, for around a year. I could feel its effects but nevertheless, it seems that this dose was next to nothing, so I experimented with a higher dose. I took a hybrid approach of
530 am Zandopa 1/2 tablespoon
11am 1 Nutacost 400@40% 160mg levodopa
2pm 1x Now 400 @ 15% 60mg levodopa. I stuck to this routine for around 9 months
. I can now say that was too much for me, and it’s still nowhere near what would have been my neurologist-recommended dosage.
My stack has been adjusted and will be readjusted. I’m sure, but I’m cruising along quite happily at the moment.
My daily routine:
5.15 am
1/2 Berocca
2 Now Mucuna
1 Ginkgo Biloba 120mg
1 Pea and luteolin (750/150)
6.30 am: green tea, 3 slices of fruit bread toast.
10.30 am
1 Now Mucuna
Quercetin 400mg
Turmeric ginger pepper 670/40/10
NR 500mg
11am 1x Banana
2.30 pm prepared snack (100 mg berry muesli, 100mg blueberries, probiotic yoghurt, 1/2 teaspoon Ceylon cinnamon) 1 green apple.
3.30pm
Krill 1000mg
CoQ10 300 mg
1 now Mucuna
L-Glutathione 250mg
Berberine 500mg
Perhaps a coffee or another green tea.
I prepare the evening family meal. Roughly with lots of greens, not much protein. Mediterranean I guess. Varied Etc., etc. balance d proportions Healthy with minimal processed ingredients.
I have a glass of red and a small chunk of chocolate to finish my day 😋
A magnesium glycinate (100mg total mag) around 9pm
In stock and trialled and will trial again. Rhodiola Rosea. Vitamin C. Jujube ps128. Sulforaphane. Lithium orate Virberi blackcurrant. Nattokinase b2 b12 cetirizine
Looking at Taurine
I also keep daily notes. I am calm with my pd .it’s just a different me😃
In conclusion, I feel pretty great. I work in a manual job. I’m active all day. I don’t do additional exercise. I keep stress down. All my symptoms have improved. I have extra aches, back , shoulder arthritis etc. Yes I’m slower , stiffer etc but that comes with being 59.😂👍
How long have you been diagnosed?
And you take the NOW DopaMucuna without carbidopa/levodopa and it works?
Thank you for sharing your protocol. How is your balance, and mobility and coordination? Do you have off-time? Has it improved?
Balance mobility and coordination. I am still very active in a construction trade industry. I’ll accumulate around 7000 steps /day at work. Yes I’m a bit slower and if I’ve been heavy lifting I’ll tire a bit. I do have some scoliosis and spine arthritis so that must play a part. No problem with balance or coordination and I don’t really experience off times. I’ll notice if I’ve forgotten my 2nd mucuna dose. I would say all my symptoms have improved. Brain fog ( don’t have any more) fatigue (vast improvement) tremors (improved) arm swing ( maybe the least improved) (but I also have a bursitis arthritis tendon damage) Fine motor skills ( some what improved. I had a reminder the other day when I got wound up by a call ( stressed out) and started shaking badly. A stark reminder it’s lurking. I focus more now on getting some quiet time and try for a stress free day. 😃👍
Thank you. V helpful. Isn't it grand that you've figured it out for your best life. Kudos for your research, discipline and follow through. Whew tho, eh? It ain't easy.
Thanks for the perfect response. I’m happy 😃. You’re right it ain’t easy. But there are ways. We all have different expectations and different resources available to us. I am perhaps lucky I just embraced my diagnosis and I now work with my symptoms the best way I can. There seem to be many people having success with varied strategies. It seems we all just need to find our own path. Our own best life👍😃
I have refined my B vitamin regiment down to this. I take 600 mg at 6:00 AM and 12:00 PM of B1 along with 1200 mg of B2, 400 mg of B6 and 1000 mcg of B12 or if I’m having a rough day I will take 5000 mcg of B12. Along with the B vitamins I also take 800 mg of Macuna at 7:00 AM, 12:00 PM, 7:00 PM. Before starting on the B vitamin regiment I was taking 50/200 of Carb/Levo four times a day, I have been able to reduced my Carb/Levo intake down to 25/100 at 11:00 AM and 3:00 PM and a occasional dose in the evenings on a rough day. I have my dr check my blood levels every three months. I am not totally symptom free but it brings the symptoms down to a tolerable level without having to deal with increased side effects of the Carb/Levo. Unfortunately it appears that I am starting to build up some intolerance to the Macuna and having to increase my dose so not sure how that is going to turn out.
B1 was life-changing for me. See my profile.
Here is my routine with B1, C/L, supplements and food. My supplements often change but these are the most consistent ones I take.
Morning
At 5:30 am if walking at 7:30(4 mile walk 3x week). If I’m not walking, I skip this dose.
1/2 Sinemet tab + 1 NOW DopaMucuna
At breakfast
1 B1 500 mg
1 CDP Choline
1 B12 1000 mcg
Oats, blueberries, flax seed, coconut nut milk, green tea
At 7:30
1/4 Sinemet +2 DopaMucuna
At 10:30
1/4 Sinemet +2 DopaMucuna
1 B-complex
Lunch
1 B1 500 mg (or 2 if I plan physical work in pm)
1 B2 100 mg
Lentil soup, Buddha bowl, veggie stir fry
At 1:30 if I need to be really active in the afternoon, otherwise I skip and do not take any more until the next morning.
1/4 Sinemet +2 DopaMucuna
Afternoon
Smoothie with fruit, coconut milk, multi-vitamin powder, mushroom powder, moringa, macha, flax seeds, cinnamon, turmeric, Sea salt,
Evening
1 vegan calcium
1 D3/K2
Vegan protein powder drink with a large salad of mixed greens, avocados, fermented veggies, onion or garlic, broccoli sprouts, mixed veggies, walnuts, pumpkin seeds, olive oil, etc.
Snacks/Drinks
Fresh fruit/veggies. Hummus, seeded crackers, plant based yogurt, nuts, Ezekiel raisin toast with sun butter and banana
Drinks: Electrolytes, green or hibiscus tea, kombucha
I eat mainly a plant-based diet. I will eat wild caught salmon or local farm-raised beef once or twice a week but mostly a clean, organic high fiber diet.
I walk/hike 3 days a week, gym 1-2 x, and lots of garden/yardwork. I also do 1+ hour yoga and 1/2 hour meditation daily. Every few weeks I have a deep tissue massage and cranial sacral therapy.
I have been diagnosed for over 10 years and I feel like I’m doing ok.
I would suggest that you read Daphne Bryan’s book on the B1 protocol as you need to take cofactors and be aware of what you need to notice in order to establish the appropriate dosages for yourself. There is also a support group for this on FB. I also suggest doing the B1 protocol first and then experimenting with mucuna pruriens.