Hello everyone, I have reached my sweet spot: I am at one gram of thiamine hcl...
It will be three months on May 18th that my dose of comfort has been found...
But according to you, given the low dose, should I take a one week break after 3 months?, 6 months?
Your tips are welcome
poke chartist Kia17 Gioc park_bear
thx for the link chartist : healthunlocked.com/cure-par...
At 6 months in, assuming you are stable with no dosing issues, you can either keep going or try taking a break to see what happens. Stop until symptoms just start to worsen and then restart. Some people don't need to take B1 breaks, while others find it helpful. It will also let you know if your dose is a little too high. Some B1 users who seem to be well in tune with their bodies learn to take a day or two off when they feel they need to.
Btw, it would be useful for others if you mentioned exactly what benefits you feel that you are getting form B1 at your current dose.
Art
This looks like 80 good reasons to try b1 vitamin 😉
I put an asterisk for my own improvement points...
that nothing appears is that there was nothing to improve, because my parkinson is recent
I'm very lucky, because my Parkinson's doesn't have tremors
1. Hope for the future improved*
2. Brain fog / focus / clarity improved up to 100%
3. Gait improved to as great as normal*
4. Arm swing when walking returned to normal or very improved*
5. Shuffling reduced or eliminated
6. Balance / stability much improved
7. Tremor of hands, arms, legs, fingers, toes and feet reduced to as low as zero
8. Energy level increased*
9. Handwriting / micrographia / typing / mouse usage / improvement and increased speed also for all three*
10. Stamina / much improved stamina*
11. Constipation significantly reduced or eliminated*
12. Frustration much reduced
13. Muscle cramps / spasms / charley horse reduced or eliminated
14. Pain / all areas including neck, back, arms, legs, feet, etc. reduced or eliminated*
15. Head tremor reduced or eliminated
16. Bradykinesia / slow motion reduced or eliminated*
17. Drooling reduced or eliminated*
18. Mouth and jaw tremor reduced or eliminated
19. Hallucinations reduced or eliminated
20. Improved voice volume, projection and clarity*
21. Decreased use of multiple forms of levodopa and other PD meds
22. Reduced stiffness / rigidity*
23. Improved sleep through the night and better quality sleep*
24. Improved ability to taste and smell or normalized
25. A general feeling of well-being*
26. Going from not being able to walk to being able to walk
27. Stooped posture improved*
28. Coordination improved
29. Body and joint aches (all areas) improved or eliminated*
30. Depression reduced or eliminated
31. Use of hands to do things that were not previously possible before starting B-1
32. More fluid movements*
33. Dystonia down to as low as zero
34. Apathy reduced or eliminated*
35.Easier turning in bed and getting in and out of bed.*
36. Anxiety reduced or eliminated
37. Facial expression / masked face improved to normalized*
38. Fatigue reduced*
39. Concentration improved
40. Mood improved
41. On time increased / off time decreased to as low as zero*
42. No longer a need to always be grabbing onto things to maintain balance
43. Improved memory
44. Ability to snap fingers again
45. Vision acuity increase
46. Twitching reduced or eliminated
47. Mood swings reduced
48. Willingness to socialize again / more outgoing
49. Walking speed increased with stability and ability to go greater distances*
50. Strength in Legs Improved
51. Freezing reduced or eliminated
52. Dragging of feet or legs reduced or eliminated
53. Dyskinesia reduced as low as zero
54. UPDRS score reductions of 20% or better
55. Push Test improvements to quicker balance response
56. Hopelessness reversed
57. Physical flexibility improved*
58. Improvement of gut problems*
59. Improvement to a state better than when originally diagnosed with PD*
60. Being able to continue working instead of forced retirement or not being able to work anymore.*
61. Being able to get up from a seated position unassisted and easily*
62. Being able to traverse stairs normally again or improved
63. Urinary incontinence and urgency down to as low as zero*
64. Significant slowing or halting of disease progression*
65. Increased hand strength
66. Improved swallowing ability and confidence in swallowing*
67. Improved driving comfort and ease of entry and exit from the vehicle*
68. Feeling much more comfortable in your own body*
69. Feeling as though you now have a future to look forward to instead of no future except declining health and abilities*
70. Raised toe curling
71. Ability to exercise more with greater ease*
72. Increased productivity throughout the day*
73. Ability to do things after work into the night instead of going home and taking a nap or going to bed for the night
74. Ability to interact with others more effectively in a work environment
75. Quicker recovery from hard workouts, walking, jogging and exercise*
76. A Return of Lost Creativity
77. Ability to do without a walker or cane
78. Reduction in inflammation*
79. Ability to sometimes forget that you have PD (This is Dr. Costantini's favorite on this list! )*
80. Smiling again and a more positive attitude noticed by people around you
Lorenzo
Very impressive and significant improvements, Lorenzo! Thank you for taking the time to give such a definitive answer! I am very happy for you getting so many improvements. If this were a prescription drug, people would be banging their neurologist's door down trying to get a script!
Art
What b1 do you take and where do you get it from
capsules of pure thiamine from Sunday natural
I just counted the actual number of symptom improvements you got from B1 out of the 80 symptoms listed and you got 38 symptom improvements! Wow!
Art
HwP is on carbo-levodopa 50/200 3x day and 100mg sublingual B1..still has tremors and fatigue etc. dr added amantadine 100mg 2x day. Any thoughts would be appreciated thanks
thx a lot chartist
agree with you…I also take Mucuna 😉
Please define sweet spot.
It is a slang term from the b1 users community that indicates the ideal personalized daily dose.
when you reached your dose of confort with many improvements and without side effects 🤪
how much b1 do you take a day. I have a hard time absorbing it cause my hypothyroidism. Not sure if it’s the meds or the condition
1000 mg/day
Two doses :
before breakfast 500 mg
Before lunch 500 mg
you could consider sublingual b1 which is under the tongue dissolved and enters through mucus membrane rather than stomach
ok I’ll check into that. I appreciate it.
in my opinion it’s easier to find the sweet spot with oral doses
I can’t comment on Oral use because I chose to try sublingual first and hit my sweet spot almost immediately then got significant improvements within 4 weeks and those improvements have stayed with me. Diagnosed 4 years ago.
I only weigh 115 pounds. What would a good thiamine sublingual dose be for me?
hi have you read Daphne Bryans book from Amazon and watched her utube video interviews. All full of easy detail. My personal thoughts on sublingual doses is start small and when necessary only increase slightly if you are going to avoid overdose symptoms. Suggestion 50mg Mon. Wed. Fri for at least 6 weeks documenting any slight change in symptoms. Then assess after 6 weeks. But you need magnesium and bcomplex to work together with b1 to achieve success
I don’t need be complex cause my diet provides me the others b vitamins…
And i also just take not a important dose of b1
But I take magnesium twice a day
what do you mean by ‘not a important dose of b1’
If you follow the protocol for the b1 therapy it is very important.
Have you read Daphne Bryan’s book from amazon
everybody is different 
I am not deficient in the others b vitamins
The more you take a large amount of vitamin b1, the more it lowers your level of other b vitamins...
But I checked my level of other vitamins, and everything is ok
I follow the doctor’s protocol and have success
This what he wrote :
«7. What other vitamins or supplements should I take to optimize the benefit from thiamine such as magnesium, other B vitamins or vitamin D?
In our experience, we do not add multivitamin compounds to the treatment with high dose thiamine. Thiamine HCL usually is effective against the symptoms of PD (as well as the other diseases we have studied) alone. In the case in which the response of some patients requires a further enhancement of the therapy, we may add low doses of other group-B vitamins and magnesium.
Another way to look at it is to identify the dose beyond which you start having secondary effects such as restlessness or rashes. For me it is 2 1/2 g. 1 1/2 g at 07.00am and 1g at 11.30am. I am sure that everyone's sweet spot is different.
of course 😉
How has it helped you please?
I do a lot of things to manage my symptoms (exercise, nutrition, meditation, red light etc) so it is difficult to attribute improvements to any particular step, but I think that vitamins B1 help with my overall level of energy and support my mental clarity.
thank you
I was taking 500 mg thiamine every a.m. for a while and had to take a break when I began to feel worse. Then when I started again I felt better. Now I take 500mg thiamine hcl about three times a week, and 50 mg thiamine in liposomal form every day. I also take bocapa. Helps a lot! And I am also starting 100 mg each day of S-acectyl glutathiomine.
If you have time, could you tell us which of these symptoms you noticed improvement in that you attribute to B1 :
healthunlocked.com/cure-par...
Art
I can tell you my successes since using b1 sublingual which is endless
Smile back, arm swing, back, balance improved, no dragging right foot, turn over in bed easier.more energy, handwriting slightly improved,
It is good to learn exactly what symptom improvements people get from taking vitamin B1. In Lorenzo's case, he actually got 38 improvements from the list of 80 potential symptom improvements that have been reported on this forum by many people. Thank you for listing your 8 symptom improvements!
Art
Hi Windermere1,
I am very happy for your improvements. I can testify that Dr. C was always happy when he saw one of his patients with these gains , that without asking , the patients reported to him. I believe the results were his real pay for living available to patients to the point of trscurating himself. Thanks for the testimony, but don't let your guard down!
Tremors better, handwriting improved, and strength to work out better. Greater feeling of balance.
Hi Thaxter,
First of all, thank you for sharing your improvements.
I find your supplement regimen very interesting and particular. I'd like to know more maybe in a dedicated thread.
Many thanks.
Gio
Hi Gioc,
The B1 supplement I take each day is called Cardiovascular Research Lipothiamine. I boost that with Solgar B1 HCL 500 mg, but no more than 3 times a week.
The Bacopa monnieri (also known as Brahmi) is used for PD in Ayurvedic medicine, which is how I discovered it. You can find articles in PubMed about this herb.
I learned about S-acectyl glutathiomine from reading about how glutathiomine injections dramatically helped Dr. David Perlmutter's patients. He is the author of "Grain Brain." This is his assertion as a neurologist, and I can't find much else about this treatment. I have ordered his book "Brainrecovery.Com: Powerful Therapy for Challenging Brain Disorders" to learn more.
Since I cannot afford glutathiomine injections, I researched other forms and found that the S-acetyl version is highly absorbed, like the injections. Not much research has been done on this and I just started using it, so I can't speak to its efficacy yet. For now it's just an experiment! Hope this helps.
Dear Art, dear Gio, a little update on my condition… I don't think I need 1000mg of thiamin anymore, I've read you both a lot, and I've come to the following conclusion:
my own cells don't need a gram of thiamin anymore, but a little bit less i think 750mg is enough
indeed, for a few days, I had noticed pain in the left shoulder in the right shoulder as well as in the left foot which I did not have before, I also noticed bradykinesia on the left side…
Since I took a break yesterday, I have recovered fluidity of movement, my bradykinesia on the left side has disappeared, as well as my pain...
So next Monday, I'm back to 750 mg
Lorenzo
Poke chartist Gioc
Lorenzo,
If you run into problems at 750 mg/day, sometimes people are able to just skip a dose, possibly once or twice a week in order to maintain an optimal dose, but that takes a little practice and paying closer attention to how your body is reacting.
On a related note, if the pain persists despite the dose reduction, some forum members have reported taking a B vitamin multi such as B-50 has helped in that area. Also, taking a bioavailable form of magnesium such as magnesium glycinate can be very useful to activate the B1 you are taking.
Art
Art thx for your answer
I take everyday two capsules of magnesium l thréonate …
I will continue taking it now
Generally, it takes roughly 4 capsules of magnesium l threonate to get to around 400 mg of actual magnesium. With the l threonate component, this totals around 2000 mg of product. The RDA for men is 400~420 mg of magnesium and the body seems to have a high tolerance for magnesium in its more bioavailable forms such as magnesium l threonate, magnesium taurate and magnesium glycinate.
Art
you are right but cause I took little dose of thiamine, do I need 4 capsules ?
I consider the RDA for magnesium to be modest, so getting the full RDA through the food you eat and supplementation seems prudent. Magnesium is not just useful for conversion of thiamine, but also highly beneficial for the body and since insulin resistance(IR) can be a problem for PwP, magnesium offers help in reducing IR among many other health benefits. I wrote a little about IR and PD here :
healthunlocked.com/cure-par...
Art
thx for your answer 🤜🏽😉
I take magnesium in this form,
Integratore Calcio Magnesio Vitamina D e Vitamina C in Polvere 200g - Bevanda Istantanea | 400mg Gluconato di Cal, 200mg Carbonato di Mag, 500mg Vit C, 25mcg Vit D3 amzn.eu/d/gF4IjpR
a couple of glasses in the evening is great for muscle relaxation and is cheap. There are good reasons to take calcium and magnesium with thiamine.This is slightly acidic with ascorbic but you can also do it with apple cider vinegar, it immediately enters in circulation without being complicated.
It costs less and works well, no cramps
Hi Art, I've been thinking a lot, and I think I've found the solution
I overdosed at 1250 mg, I found that this overdose happened very soon after I went to that dose...
so I'm going to take vitamin B1 again on Monday, but taking a break of a day or two a week...And stay on my sweet spot : 1000 mg…
I am not going to decrease at 750mg
Thanks for your advice, I think that's what to do
Poke chartist Gioc
Lorenzo , In my opinion
B1 thiamine makes levodopa work better.
Levodopa works best away from protein meals.
Levodopa is the uncontrollable variable.
Some variation in neurotransmitters at the change of season can happen.
PD symptoms always change ′′ it's old age ′′ 😉, it's the slow progression of the disease.
I suspend b1 only in case of symptoms of excess, but with injections it is different.
thx a lot for your interesting answer…
I have overdosed very quickly at 1250 mg…
thiamine cause to me muscle tension at this dose
In my opinion 1000 mg is a little bit too much for me
I am very patient. Sensitive/responsive to the treatment.
Do you think B1 therapy stop the progression of the disease or just slow it ?
Lorenzo
Your pic is very beautiful 🤪👈
Difficult to answer: if I look at the more affected left side I would say slightly worse, if I look at the right side practically almost normal maybe a little better. 11 years after the onset of the tremors. I don't take dopamine agonists (never taken), just madopar.b1, b3 niacin and cal-mag, plus all other vitamins in small doses. A small dose of CDP-Coline occasionally. After years of levodopa I might even consider not responding well to levodopa anymore but this is the result anyway. My wife says I'm the same as before, that is, I haven't improved in character and physically I haven't gotten worse😂.
Self-assessment is always related to mood even if the videos show no significant decline, so I'm quite satisfied with the result, i.e. progressione rallentata sul lato sinistro affetto e ferma sul lato destro meno affetto.
Gio
Change of position 🤷♂️
Thank you but I realized that it was posted in a wrong place, now I'm going to move it.
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