I first wrote about the B1 High dose Thiamine on January 31, 2020.
Then after researching more, I posted these findings on Feb 26th
I have documented progress I have seen in my personal life on my ‘Transparency’ Page.
I first learned about the B1 High dose Thiamine therapy through a post on HealthUnlockled . In a post by a gentleman with the User ID RoyProp. I learned about Dr. Costantini who was still functioning heading up the research in Italy. To learn about the research go to Facebook Parkinson’s thiamine hcl
If you click on ‘More’ and then ‘Files’ there were links to documents showing his research findings, but since Covid took Dr. Costantini away from us. I think the links may have been taken down. So I’m including one of the documents I cut and pasted:
“benefits are described by many members who are using or testing B-1”
By HU member ‘easily’. Carried over from healthunlocked.com/parkinsonsmovement
“I decided to go through the thread and list each benefit that has been mentioned by this group of B-1 testers and users from the HU forum.”
“Here is the list of symptoms that members have reported as being “reduced” by varying degrees to as low as zero or improved very significantly on the HU forum. About 95% of the list was compiled directly from the “who is taking thiamine” thread and the other 5% from other posts on the forum. A List of Improved Symptoms Reported From The Dr. Costantini B-1 Protocol Users And Testers On This Forum:
1. Hope for the future improved
2. Brain fog / focus / clarity
3. Gait improved to as great as normal
4. Arm swing when walking returned to normal
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 / endurance much improved
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.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 / 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 40% 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. Toe curling relief
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
80. Smiling again and a more positive attitude noticed by people around you
“Dr. Costantini’s favorite from this list is #79. He said this is what he and his team is working toward with all of his patients and that is a very nice goal!
What follows is some testimonials from the HealthUnlocked
My regimen: by Roy Prop & then others…
The positives: no bradykinesia, I cut my food with a knife, no button difficulties, brush my teeth now w/o needing elect brush, more strength. Getting in and out of bed, turning over is easier. No more constipation. Parkinson’s progression stopped. Suppressed all motor and non-motor symptoms…
Entering my 7th year post diagnosis and have not fallen, not once, to the surprise of my neuro. Was seeing neuro every 6th month, last visit he set app one year. He said if needed we could do some changes earlier. He said my condition can change in as little time as one week.
New schedule, now I follow this regimen:
2 x day C/L 50-200 ER : 8 am, 5 pm. Because it is ER, I take with or w/o food.
2 x day (8 am 2g, and 5 pm 2g) Vitacost vitamin B1 (as thiamine HCL) 500mg, easy swallow capsules
B1 Thiamine therapy reference / stop progression, suppress motor and non-motor symptoms:
(Thiamine HCL is oral substitute to injecting B1) 2 x day (morning 2g and at lunch 2g)
Doctor Costantini strategy that I find helpful “thiamine hcl stops the progression forever…”.
Parky people say the first five years is your honeymoon stage with Parkinson’s. After that, progression more rapid.
I have gone from slow motion to normal motor action since joining the growing number of PwP that have started B1 regimen/protocol. –
Doctor Costantini – “Why is this? Because there is no medicine or drug that is able to affect all of the organs, whereas all of the organs function thanks to Thiamine. An important detail”, adds doctor Costantini, “the Thiamine therapy brings no collateral damage with time”.
Join my facebook group:
“parkinson’s thiamine hcl”
Parkinson’s Relief, Questions and Answers
1. Read page, About, open links.,
2. On Files page, open B1 FAQ document.
3. On Files page, download First Appointment document, answer and submit.
4. read Announcements
I understand you are a little reluctant to start a higher dose (I was ,too!) but 100 – 200 mg may not make a difference. Based on your size (height x weight) i would start with 500 mg in the morning (before 10pm) and 500 mg in the afternoon (before 4 pm). I started with 2x 1g and now I’m at 2×0.5 g. I saw partial results after a week and full results after a month. You can gradually increase from 2×0.1 to 2×0.5 or even 2x1g but probably will take longer to see results. I think for you the best dose would be 2×0.5 which you can gradually reach in time. You need also to drink a lot of water to eliminate it. I take it from March 2018; the single symptom left is some tremor in RH. All the others are gone. Usually I take it on empty stomach with a piece of dark chocolate. Avoid citrus juices soon before and after taking it.
You can stop it for 2-3 weeks and find out. If you get worse, you can always go back on it.Reply (4)Report
parkie136 months ago
For me it has made a tremendous difference, my balance , my driving, being able to sit up in bed and turn over in bed. Just recently, I stopped taking it for about three weeks and I noticed my balance was getting bed again. I restarted it at one pill of 500 mg a day and I’m just about back to the way I was before. With me thiamine HCL raises my blood pressure so that is why I stopped for a while.
Jennyjenny26 months ago
I have been going to post for some time about my husband’s symptoms improving since B1, but wanted to find the correct dose first. He had also been taking 150mg CL daily (originally 300mg but reduced by using mucuna) since April ‘18, but he was still severely constipated (having once been hospitalized), had a foggy head, his balance wasn’t great, had difficulty swallowing, anxiety… the list goes on.
Dr C started him on 500mg x 2 in Jan ‘19. This was based on him being 6 ft tall, 68 kgs and 60 years old. After much experimentation, we have settled on 400mg x 2, and taking a break for one day every 10-14 days, or when my husband has an unrestful night sleeping.
Things that have vastly improved are:
No more constipation – this resolved after 3 days on B1
No more foggy head – that cleared after 6 weeks
Balance – slowly improved
Swallowing – at last review in May ‘19, the speech pathologist noted his mouth was no longer drooping on one side, swallowing and tongue functions were normal and he didn’t present like someone who has PD.
Anxiety – this has taken a good 6 months to get where he is, and there’s still room for improvement, but so much better.
chartistin reply to CapSage4 months ago
Dr. Costantini has said it is fine to work your way up from lower dosing to higher dosing as a viable option to starting higher and seeing how you respond and then adjusting the dose accordingly based on your initial responses. Your method is much less likely to cause significant symptom deterioration as can sometimes happen if your first doses are too high. Working up from low to high maybe a bit slower, but if you are a B-1 responder, as the majority are, you’re going to be taking B-1 for life so there is plenty of time to adjust the dose as needed.
I KNOW this was a long blog entry… Congratulations if you stuck it out to the end.