Parkinson's Movement
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EIGHTY REAL REASONS TO CONSIDER Dr. COSTANTINI'S Thiamine / HDT / B-1 PROTOCOL BASED ON HU FORUM MEMBER'S EXPERIENCES

There have been many hundreds of posts on this forum, possibly thousands, describing the use of B-1 / Thiamine as a potential supplemental treatment for PWPs and there is a specific thread where these benefits are described by many members who are using or testing B-1, but that thread has so many posts, it is time consuming to go through it and see what those benefits are for each individual. 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. I have added a link to that lengthy thread at the bottom of this post if any one wants to verify these symptom improvements by the forum members.

Having started that thread, I was already aware of the many benefits that are mentioned by forum members, but I had never seen a complete list of those benefits in one place. Just from glancing through those posts, I felt there were probably about 20 common PD symptoms that are responsive to B-1, but once I started compiling the list below, it became quite clear that that 20 number would be completely incorrect and shy of the actual number of benefits that the members have actually mentioned in that, " who is taking thiamine thread"! I must admit that I was very surprised by the number of benefits reported, especially when I thought I knew most of the symptoms that people have reported benefit from and I think many of the forum members are likely to be surprised by this list also!

It did take me quite a bit of time to go through that thread and gather this list, but after completing this list, I felt it was an effort that was well worth it! The reason I compiled this list in the first place is to create an incentive of sorts for anyone who is considering testing B-1, but is currently on the fence about contacting Dr. Costantini to get started. One look at this list and if it can't get PWPs motivated and off the fence, well then I doubt that anything can!

What this list also clearly illustrates is just how diverse and wide ranging PD symptoms are and way more than I ever realized even though I read this forum almost everyday! After compiling this list, I started wondering what other supplement or drug, when added to an existing and standard PD regimen, could offer as many potential benefits for PWPs. I can't think of any other supplement or drug that might come close to thiamine B-1 in this scenario. I know some of you may be thinking that there are other supplements or prescription meds that are probably similar or as good, but remember, I am talking about the addition of only "one item" to an existing standard PD regimen. I think that once you look at this list, you might be more likely to agree with me on this.

You may feel that many of these symptoms are similar to others or may overlap with others, but even then, this list is still quite impressive and I would venture to say, probably incomplete!

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.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. 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 (This is Dr. Costantini's favorite on this list! )

80. Smiling again and a more positive attitude noticed by people around you

This looks like 80 good reasons to get off the fence and contact Dr. Costantini, but that's just my opinion, you will have to make that decision for yourself! If you're like MBAnderson and like to make a pros list and a cons list before making a major decision, consider this 80 as the pros list and you create your own cons list and then you weigh the difference between those two lists and you decide for yourself!

Here is a link to the "who is taking thiamine thread":

healthunlocked.com/parkinso...

Art

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oldestnewest

art-thanks so much for taking the time to compile that list!!!! its good to have them all in one place.....

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jujulini,

You're welcome!

The shear amount of benefits that have been realized by forum members on this protocol, to me, is amazing!

Art

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Great job many thanks

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Art, quite an effort on your part. THANK YOU! Amazing results although my husband still hasn't experienced a lot of improvements yet but rather some downsides. Latest communication with Dr. C was yesterday. He wanted another pull test although the last one was on September 25. He went from 100ml x 2 week, to 150ml Mondays and 100ml Thursdays. Back to 100ml x 2 week until this last Thursday. I am thinking of lowering the dose to 75ml x 2 week, until we hear from Dr. C. for latest pull test (to be performed on Monday from our chiropractor). God, it's so frustrating. . .

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Correction: 100MG or 1 ml, not 100ml. :)

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but Despe if I can ask, how's the pull test? improves or gets worse than before?

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Not sure Gio. According to Dr. C. the latest (25 September) pull test was improved. Why he wants another one within less than a month, I don't know. Symptoms were/are not improved.

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Despe,

I do not know, I would ask him, but I see that he takes great care of your case, I'm almost jealous because I see him and I hear only once a year and I have to go to Viterbo ITaly.

A symmptom that I would add at 80 is this: "The PwP is more extrovert and his attention mainly goes to the life around him and no longer on his symptoms and his body”.

What do you think about it?

for me it is so given that at 56 I still have to work 8/9 / ... 12 hours a day. I do not have time for pull tests and I prefer beach holidays.😜

Ciao Despe,

You are an example for all of us for your dedication, care and love

:-)

Gio

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And you are an inspiration to us all, Gio! Always encouraging and supportive. Working is great for your spirit. My husband retired in August, so plenty of time for pull tests, hahaha. :)

We replied to Dr. C. and said that my husband will lower the dose from 200mg a week to 150mg until he sees the new pull test. I have a feeling that the present dose at 200mg a week ago and 250mg 2 weeks ago is high.

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Hello Despe,

Does your husband get B1 by injection or orally?

Regards,

Thia

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Hello Thia. Injections two times a week.

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Art thank you for your time and effort in compiling this list

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hanifag,

You're welcome!

I hope it encourages people to contact Dr. Costantini!

Art

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Good job!! This list should be presented to all Neurologists throughout the world ..

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Too right! Our neuro just scoffs at us if we mention anything like this. They are sooooo blindsided and narrow minded!!

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dadcor

That would be a nice thought! Now if they would just read it and do a little research, that might be a lot better!

Art

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Why not at next World Neuro Congress … Could be a poster on behalf of the Patients, if not an official presentation. They will all have to read it.. Think of that?

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Good idea, dadcor!

Dr. C has a copy now, so he may end up adding it to the literature that he takes to some of these meetings that he goes to and he can add it to his website if he feels it may be additive to what he already has? I think he may have an upcoming idea or two planned, just have to see what he thinks and wants to do.

Art

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Another 5 cents.. If it comes on behalf of, or is supported by a solid Patients Forum/Organisation etc., the Neuro society should at least show consideration. They are obliged to..

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I'm afraid they might do exactly the opposite for a while.

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Do what..?? Tell us we do not feel better.. :)

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Eh yep!

I means a non-consideration.

But there is a little difficulty in denying it.

Which then arises from a lack of effective treatment by official medicine.

I mean, if there was something "approved" that stopped the PD, I wouldn't be here to get my b1 injections twice a week for the life I have left, with some neuro saying it doesn't do any good.

But not considering improvements at least in non-motor symptoms that are not related to l-dopa is a bit too much. B1 is not a cure, but improvements on non-motor symptoms such as intestinal disorders and fatigue are undeniable in my case and I am diminishing the effectiveness as I should not.

There are also many good doctors who work shoulder to shoulder with patients with the sole purpose of defeating the disease and have all my admiration for it.

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Gio, European doctors are more compassionate than their US counterparts. In the US, everything is about $$. Medical doctors see you for about 15 min, ask you about your health problem, they listen, and prescribe meds. Next patient, please! They don't give you enough time to discuss your health problems in depth as they book appointments every 15 minutes. Why bother??

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Compassion can be a pleasure, but from a doctor I prefer competence and efficiency in solving diseases.

Gio

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Hi Art

Thank you for your efforts in adding all these together in this post.

Kia

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Thank you for your kindness and compassion towards those who read this forum.

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enjoysalud,

You are very welcome!

Art

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Thank you so much Art. This is awesome! I'm working with Dr C but this list is so encouraging!

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SFLR,

You're welcome! Dr C.'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!

Art

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Thanks for taking the time to do this. Quite surprising results!!

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munchybunch,

You're welcome!

As many times as I have read posts in that thread, I just did not realize that so many benefits had been reported from B-1, very surprising to me!

Art

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Art, thank you for doing this. The list has so many symptoms that I currently have ...... I am feeling very optimistic . I feel very hopeful that Dr. C will find a good dosage for me. Starting week 5.

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moparkie715,

Good luck on your B-1 testing!

Art

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Art, Doctor Costantini has left my dosage amount the same, but so far I show very little Improvement . Do you know if I will continue to see improvements staying at my current dose? Can you tell me how how long does it take to see improvements? I apologize if I sound very desperate for answers.🤐

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From what I have seen on this forum, it seems Like Dr. C is trying to use a slower approach in narrowing down the optimum dose for each individual. It seems that he wants people to stay longer at each dose adjustment because some people are slower to respond to dose changes, so if he goes too high or too low too soon, then he ends up having to go backwards in terms of dose amount. By spending enough time at each dose, I think he is trying to avoid going backwards. It can be slow and generally very frustrating, but definitely worth the effort.

On a related note, if you find that you are having new issues that you are concerned about or just generally having doubts of any type, you should drop Dr. C a quick email so he is aware of any problems.

What Dr. C has said about improvements is that once the optimum dose has been found, improvements continue for about 6 months , but on this forum , people have reported improvements beyond a year.

As far as how soon improvements occur, it has been seen in hours after the first dose by some, in days by some, in weeks by some and in months by some. I've seen it reported at eight (8) months as the longest so far to start seeing benefit.

Response to B-1 is all over the map and can take time, so with this protocol, it can take a lot of mental effort to stick it out through this period of finding that optimum dose.

The following link can answer most questions about the B-1 protocol:

healthunlocked.com/parkinso...

Art

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Thanks. You are like a walking Book of Knowledge.

Art, do you know if it makes a difference::

I take my C/L, wait 15 minutes and take my thiamineHCL . Then I wait 15 or 30 min more before I eat breakfast..

Does this sound okay? I am usually hungry so sometimes I have a small breakfast cookie with myC/L ( , it has no protein)..

I am trying to make sure i get the most benefit but it is difficult as the meds make me feel sick if taken without food first thing in the morning.

Thanks for your help

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Although I think Dr. C would prefer to take B-1 on an empty stomach, he has clearly stated that it will also work with food. CL and B-1 are completely compatible.

Art

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This is a more complete list than exist on any Parkinson's organization or PD medical institution website -- which means the PD healthcare professionals could learn something from this forum (and from easilly) -- if only learning from PWP were not such a bother.

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Yessss!

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Bless you for this great labour and its encouraging results, Art.

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Most grateful for your kindness Art.

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Thanks for putting in so much effort. Guessing you didn’t find many without benefit?

I wish I was one of them who could add my good results to the list but I continue to have no benefit.

I am still working with dr c.

Confusing because he says my tests show improvement but my husband and I agree that my symptoms are worse. So dr is lowering dose for now but I didn’t see a prior benefit when I was at the lower dose.

Continuing to try

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chrisz,

Actually, some have reported no benefit, but these are the minority and generally they have tried to go it on their own without consulting with Dr. C. and often times give no other information other than to say that B-1 did not work for them and we have no other information to go on because they have given none.

You are doing the best that you can do by staying in contact with Dr. C and if it were me, I would stay in contact until he figures the correct dose out or gives up on my particular case, but I have not seen Dr. C give up on a case yet. The lucky ones start to see results in hours, but some have not seen benefit until 8 months!

Art

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Thank you for time and effort you put into helping all of us! It is reasuring to read the list and see where we were and where we are now. i am encouraged! Thanks for your kindness as well!

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You're welcome!

This is why Dr. C is so insistent on taking the videos because it is a fairly good way to document improvements over the short and long term for both himself and you!

The more people report, the more information we have to go on, so this is a case where more is more!

Art

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Listen up I’m 43 yo with yopd confirmed with dat scan I tried 50 vials of B1 injectionable 200mg/2cc 100mg/ml and absolutely nothing. Spent over 500.00 . Don’t believe what people tell you. Lots of us are desperate and hurting. People will take advantage of you. I tried every dose In different combos and nothing!

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I am really sorry, I do not spend so much on injections. At the moment here they cost € 0.60 for one, plus the transport that varies, I live in Italy and I take them in Germany with the doctor's prescription.

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Gio, I just finally (Friday) finagled a prescription for injections and am shopping around where I can buy them. Someone said a lot of the commercial manufacturers have aluminum in their product. Do you know if yours do? If the pharmacy you buy from in Germany ships to Italy, probably they shipped to the US, too? And, how much for a one-month supply?

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Yes, they will ship B1 to the US, but US won't allow import as they are only prescription in the US. Tried it and US customs sent them back to Germany.

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ahhh, you told me that once before. As I remember, you found a compounding pharmacy in California? I sent them an email Friday.

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Yes, got the recommendation from Julie (thanks, Julie). McGuff Compounding Pharmacy, Santa Ana, CA, (877) 444-1133. Had our doctor prescribe it and asked him to send prescription to this compounding pharmacy. Good luck! :)

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Thank you, thank you.

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But which aluminum? but it does not exist here in eu it would be written there. Buying in Eu is possible as Despe has already done. But the point is that the customs stops the thing as often happens. Now I'll tell you what happens here when I buy vitamins from the U.S. as emergenC alacer that costs much less from you.The Italian customs, if the package exceeds € 50 including transport as evidenced by the transport document, sends a form which asks why you buy these vitamins that is the recipe of the Doctor of base that you have to do, sending this documentation the customs passes the package. Different is the import from Germany to Italy that is easier. For my experience it is better not to exaggerate to save on transport. Conclusion: each country has similar laws, you can inquire first and perhaps even from you in U.S. it is possible with a recipe to import from Germany.

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Thanks.

This is probably one place big Pharma has stepped in to stop people in the US from buying pharmaceuticals elsewhere, which is why everything is so much more expensive here.

Do you or Art know how many people on this forum are taking thiamine as injections?

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But I would check it with the customs authorities first. Because, since these are small amounts for personal use, perhaps it is possible to have the recipe.

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Marc,

The pharmacy that Juliegrace found in Southern California told her that their product has no aluminum. It is listed on the thiamine primer page in the section with links to thiamine suppliers.

Art

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Thank you, thank you.

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dylanfelson- i am sorry thiamine didnt work for you, but members of hu are not fabricating the benefits theyve had taking thiamine. no one, including dr c, is taking advantage of anyone. there is nothing to gained by it, financial or otherwise.

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I fairly doubt you’ve done it right, both dose and timing wise.. You better go to Italy and meet Dr C..

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Dylanfelson, I feel badly for you too, as I'm sure everybody does. Terribly frustrating, especially since it seems to work well for so many. I just got my prescription and if it doesn't work for me, I'll feel pretty disheartened. You took a chance and you persevered and if you maintain that attitude and determination, it will serve you well. I believe there is a sweet spot out there for many of us where some combination of nutrition, exercise, pharmaceuticals, and alternative and complementary therapies will slow or stabilize the progression. Evidence of that is there are lots and lots of people on this forum who say they're doing quite well without thiamine and every single 1 of them got there because, like you, they had the courage to take a chance and the strength to persevere.

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since aluminum is a neurotoxin thats been linked to alzheimers, its the last thing any of us needs. i would switch to the oral form of thiamine.

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The label on the injectable thiamine says 400 mcg/L. I don't know if that means per milliliter or per liter, because it would be a big difference. I'm actually trying to make a calculus as to what rate it accumulates and how much causes damage against my age. Do you know?

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I emailed you back, hopefully it all makes sense.

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Art, thank you so much for what you have done /do for us all. I had started to doubt the benefits a little, thinking it wasn't working as well as I had thought it would and I realised, reading your list

, that I could list a lot of those benefits : better handwriting /typing, depression lifted, greater energy, better sleep, feeling like the person I used to be, finding my old energy and creativity again... so, though my tremor is worse, I think I just have to persevere with getting the best dose. Your post is the most encouraging thing! Thank you.

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Celtis,

I'm glad that you are realizing benefit from Dr. C's protocol and two things to keep in mind is that people have reported improvement beyond a year and I feel certain that that list is not a complete list because it was based almost entirely off the forum member responses to the "who is taking thiamine thread"!

Two of the main reasons Dr. C wants his patients to make the videos before starting treatment is that people often do not realize they are improving and some times the improvements are so gradual, you just do not realize they are happening unless someone just happens to mention something like , your voice sounds so much clearer and stronger or you look like you are walking normal again. The videos are the best and easiest way to memorialize how we were compared to how we are now. I did not think this was a real phenomenon until I saw it first hand in one of my PD friends who thought he had not improved and yet to everyone who knew him, the positive changes were so obvious!

A wish for continued improvement to you, Celtis!!!

Art

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Thank you Art

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Celtis,

I forgot to mention, but if you are mainly down to tremors, you should know that 25 people on this forum have improved their tremors down to as low as zero at the best, but tremor is usually one of the last symptoms to go. On a related note, once you have your optimum dose of B-1 perfected, Dr. C can adjust your meds to push even harder on the tremor if you choose to!

Art

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Dr C did advise me to increase the c /l and I did that but I find the dyskinesia much more distressing than the tremor so I have gone back to half 25/100 three times a day.

What I want to report is that I knew I was better, how much better I didn't realise until I looked at the videos. These were the third lot, taken after three months on thiamine. The difference would have been obvious to any one.

The one thing that was very clear was improvement in my handwriting. I have been recovering from a very big heart op so some of my improvement could be attributed to that. But handwriting has nothing to do with heart. It is pd that makes it go wonky.

I would like to post pictures of my writing after one month and after three months because I found it them so encouraging and I am sure that the hope that comes with all this is important to us all.

Only I don't know how to do that. Maybe you could direct me?

The other thing I want to report was that the feeling of being better came quite suddenly. One day everything was as usual and the next day it was suddenly different. That was about a month ago and it has stayed that way.

I am lucky to have found this early on, hopefully early enough to make a real difference.

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Celtis,

I'm sorry I didn't reply to this sooner. Unfortunately I do not know how to post pictures either! Perhaps another member who knows how will see this and explain how to do it ! Members?

Art

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Art, apparently, I'm another one of those. I had my semi-annual visit with my neurologist at the VA yesterday after he did the UPDRS examination, he said I am doing better than I was at the last visit. Since my appointment, I've been taking an inventory and come to feel he's right. My wife agrees. It's been so gradual I could not tell.

Marc

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Amen to that, Marc!!!

I am so very happy for you!

It was a bit of a wait, but you have improved and you have the testing, your wife , yourself and the Dr. to prove it! How long have you been on the 4 grams? You might just be the record holder for "slowest to improve"! Oh, and maybe this means you are going to be a non-proggressor now!!! Very nice way to head into the weekend!

Art

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Art,

I started 2 g twice a day on March 1, so it's been 8 months. I'm glad I hold the record for something. I think my improvement is minimal -- 5% to 10%. I'm not complaining, mind you, I'll take that.

I'm excited, though, because I just paid for 30 mL of injectable thiamine from the McGuff pharmacy today ($23,) got my syringes from Walgreens ($0.15 apiece) and expect to get it on Thursday next week, although I won't get to take it 'til the following week.

I'll keep you posted.

Weehaa.

Marc

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Yes, I definitely think you are the record holder!

Art

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Wow 😲. Art, you're the greatest 😊

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Hey Ernie,

Any updates?

Art

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Hi Art,

I’m able to dish food with my right hand and generally use my right hand more for everything. I’m right handed and have bad tremor on my right arm and hand altogether which was progressing to my right leg and that seems to have reversed somewhat. The dyskinesia is almost nonexistent. Can’t thank you enough for this list. Very motivational especially for those on the fence, I hope.

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Thank you for that update,Ernie. If I remember correctly, the dyskinesia was one symptom you were interested in dumping as soon as possible! Congratulations and I hope you see continued improvement in all aspects of this disease!

Art

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That’s right. Thank you Dr Art 😊 which is what we need to start calling you. By the way what do you do? Or use to do?

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Not a doctor.

I read a lot!

Art

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Art, you are the man! This compilation of common benefits seen with use of B1 is great! Thank you for taking your time to put the list together for everyone to view. The potential benefits of B1 are worth the efforts we all have made (or are making), and the resources and feedback provided by other members is priceless. ANY improvement is never too small and a seed of hope will only grow.

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Thank you, LMl!

You just said a very important mouthful right there!!!

Art

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Art,

Thank you for collating all the information I'm sure it must have taken you a lot of your time and energy, it's most appreciated and encouraging you're a star!

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You're welcome!

How is your friend doing, I haven't noticed any updates in awhile?

Art

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Hi Art

Just read your reply, I haven't been checking this week.

My friend hasn't been doing that well on 500mg thiamine which she has been on for over five weeks and Dr. Costantini has asked her to reduce again to 250mg per day or 500mg every other day after a suspension of a week.

Although during the period she was on 500mg per day she had 3 or 4 excellent days when most of her symptoms were minimised.

I was going to ask if anyone has reduced down from 2 grams a day to only 250 mg a day with any success.

Finding the correct dose is a challenge but one worth working at.

Thanks all

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I will say that it seems that Dr. C has gotten more precise in trying to dial in on that optimal dose. This is the reason I had added a link for the best price I was able to find for 100 mg thiamine hcl capsules on the "thiamine primer" page. My thinking was that it seems more and more people are finding an optimal dose that is fairly low compared to 2, 3 or 4 grams per day. If it turns out that 200, 300, 400, 600, 700, 800 or 900 mg/ day is the needed dose for any individual, then the 100 mg capsules will make it easy to reach that exact dose. Also if it turns out to be something like 1,100, 1,200, 1,300 or 1,400 mg /day, then the 100 mg capsules should make it easier to dial that in.

healthunlocked.com/parkinso...

With Kia17, all it took was Dr. C eliminating one day of B-1 per week to fine tune the dose and improve the results received! That is a relatively fine adjustment that I would have thought would not make a difference, but clearly it did!

Art

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Yeah after you had said about the 100mg tabs she went and got some even though she hadn't needed to be so precise then.

So it looks like that was a good idea now she'll be using them!

Thanks again

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This is flabbergasting. Thank you so much.

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Thanks for the words of encouragement MB

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One other thing read the main Parkinson’s forum board on Parkinsons.org ask the doctor. Dr Okun leading MDS . Look up thiamine just to get another point of view

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A medical doctor, and you expect to recommend alternative therapies???

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I’m sure it works for some people just not me

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Have you tried it? If so, how long have you been on it??

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Yes I tried it injections for 26 weeks spent over 500.00 and nothing for me . 100mg/1ml twice a week for 26 weeks

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Were you in touch with Dr. C.? What did he recommend? For some PwP takes a lot longer than that.

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Sorry but where you bought them to pay so much, here in Europe they cost much less.

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It is a shame you spent so much. A 30 ml vial filled by McGuff is $23 plus shipping. I had initial success with B1, then it exacerbated my dyskinesia so I stopped for a time and tried oral versions which did not work. Then after a break I started injections again at a lower dose and have had moderate improvement.

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Julie, the vials I have read "Thiamine HCl Injection, USP/200mg/2ml (100mg/ml) For IM or IV Use only. So each vial is two weekly injections, 100mg dose. How did you get 30 ml vials? Thank you!

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That's just how they came. Possibly your doctor wrote it for 2ml vials? Call McGuff and ask them about refilling it with the 30 ml.

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OMG, Julie! You suppose my husband has the wrong amount of B1?

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No, it's just how it's packaged. If you're filling syringes with 100mg (which is 1ml/cc), then his dose is the same. I'm guessing it's more economical in the larger vial.

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Btw he is one of the best medical doctors in the US AND the president of the Parkinson’s foundation

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I’m just looking at both sides after doing it myself

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Hi, where do you buy the thiamine and what brand do you use. Cheers Bitsy

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Bitsy,

At the following link, near the end of the initial post, you will find links to suppliers of thiamine. The links include capsules, tablets, bulk powder and injections that members have purchased their thiamine hcl from. You will also find answers to almost all questions about this protocol at that same post.

healthunlocked.com/parkinso...

Art

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Art, we emailed Dr. C. again with the new pull test (October 22). The reply got us confused and a little leery. We started the protocol in June, 100mg injections X 2 a week. After additional pull tests, he recommended upping the dose from 200mg a week to 250mg a week. Not even a month later, he recommended the original dose of 200mg injections a week. Today's recommendation from Dr. C. is to up the dose to 100mg X 3 a week! Is he the only one watching the pull tests video or his teammates as well? A lot of changes in dose within a very short period of time.

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I would also like to ask if anyone else is on 100mg x 3 a week. From everything I have read, can't recall anyone being on this protocol. Thank you.

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Despe,

After taking 100mg twice weekly, then increasing to every three days for several months, I stopped and tried the oral version which did not agree with me at all. Then after about a two week break I started injections again at 60mg, and now I take two injections of 80mg every week and am feeling pretty good. Maybe your husband needs less, not more?

Julie

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That's what I believe, too, Julie! He needs less not more. Experiment on our own and see how things go?

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Everyone is responsible for their care, if only because it is affected by it. If you are worried that it is not the right thing in your shoes I would write to Dr C explaining the reasons. The PD always gives rise to ups and downs due to the different assimilation of the levodopa dayli that interacts with the diet, not to mention the seasonal changes, emotional stress, annoying people in the neighborhood, sleep disorders, which cause temporary ups and downs in symptoms. The important thing is that the general neurological picture remains unchanged over long time.

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I always thought that patients and doctors form a team that work shoulder to shoulder against the disease for no other purpose. As a team, mutual trust is important as well as mutual understanding. This is also an ideal scene to be aimed at, anything that deviates from it should be remedied promptly.

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Gio, ALL I want to know is if my husband is responsive to B1. I was/am confused as it was mentioned before that Anglo-Saxons don't need as much B1 as Italians do, and had not read/heard of anyone in this forum being on 3/week injections. In addition, Dr. C. changed the dose too many times within a short period of time. Take care my friend!

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Despe

I understand your point perfectly here.

You must know that I have often used 3 injections without any adverse reaction apart from a bit of restlessness which is the thing on which I rely to reduce the dose.

The pills are different from injections as well as doses.

The b1 has never hurt me, it is widely used in emergency rooms for alcohol problems and is well known by the doctors.

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Despe,

Two studies that regain the use of thiamine already published several times here on HU

ncbi.nlm.nih.gov/pubmed/335...

dash.harvard.edu/bitstream/...

The hight dose I.M. dont seem to me so hight or no?

here one interesting:

ncbi.nlm.nih.gov/pubmed/161...

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Thank you, Gio! Yes, I know one can't overdose on B1, but as I said before my concern is if my husband is responsive to B1.

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Communicate with Dr. C and ask him if he thinks less might work. It can't hurt to ask.

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We did email him after his latest email recommending dosage increase. He replied that no one dies from it (increase), proceed with the increase and if there is symptoms worsening, contact him and will lower the dose again to the original (100mg X 2/week.) We will follow his recommendation, give it at least 2 weeks and go from there depending on the outcome.

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That sounds a lot like what Gio, was saying because he does 3oo mg / week every now and again! Is he smart or what! Keep us posted Despe!

Art

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You bet ya, Art. :)

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for example me I take 3 or 2 x 100 mg IM b1 at week on advice by dr C, at my discretion, I sometimes jump a week every 5/6 weeks always at my discretion ;

or Enrico Moraca the first Italian on HU , who talk about dr C , two years ago in this conversation . Read all it is no long and he talk about 3x 100 mg at week.Gio

healthunlocked.com/parkinso...

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Gio, thank you for replying to my question. I will follow Dr. C.'s advice and have my husband try three injections a week for a month. He is not Italian though and thought he needed less than you, hahaha. :)

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Despe,

It sounds like he feels the dose is close, but is trying to see if he can improve the push test result by adjusting further, both up and down in order to optimize the response to B-1. I would say if you are not comfortable with his latest suggestion, you should write him again and explain that you are confused by his advice and explain why.

Despe, I am a little confused myself regarding your husbands results. In previous posts from you , I was under the impression that your husband was improving, but higher up in this post, from just last Saturday (10/20/2018), you said the following,

' my husband still hasn't experienced a lot of improvements yet but rather some downsides'.

I take this to mean that not only has your husband not improved, but he is actually worse than when he started, in which case the dose is clearly wrong or your husband is not responding to the B-1. Dr. C has been pretty clear on the fact that the correct dose will only result in improvements. At 4 months in and only worsening of symptoms, you need to have a longer conversation with Dr. Costantini to determine a better course of action or whether B-1 is helping your husband or not! Right now, from what you said above, it sounds like not, and you need to address these issues with Dr. C as soon as possible, because some people have reported no response to B-1 and I truly hope that is not the case with your husband!

Art

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Art, Dr. C. is usually brief in his communication. Guess he is very busy and don't blame him. I don't know what to say to him. Actually, I can't question his medical expertise. I hate to think that my husband is not respondent although the first injection he had he definitely was! After the first reaction (I am back to normal again as my husband said), I do see some energy improvements, normal writing, arm swing (occasional), but also stiffness from the knees down. Shall I ask Dr. C. if my husband is respondent?

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Despe,

Based on what you just said, your husband is responsive to B-1. Based on what you said last Saturday, it sounded like he was not. Dr. C is using the push test to help zero in on the correct dose and this last push test that you just submitted to him must have indicated the dose is too low and so he is increasing the dose based on that push test and whatever you told him in your recent correspondence. I am not going to try and second guess Dr. C. He has more experience with this protocol than I will ever have since he has treated over 3,000 patients with B-1. You can do as he suggests or you can do something else. From my point of view, I would follow his advice as closely as I can and rely on his experience.

Art

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Art, I don't mind if he has to have daily injections as long as he is responsive. Of course, I don't doubt Dr. C.'s expertise, so we will give it a try for a month or less as he suggested and go from there.

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Despe,

It sounds like, Ray's knee issues are a significant problem for him and are affecting his QOL to the negative side and could potentially interfere with protocol progress.

Did he try icing his lower back and one knee as I mentioned to him previously? His response to that icing is information Dr. C can use in his evaluation. Ray did not update me on that, so I have no idea if he did or didn't try the icing. I hope you have communicated this to Dr. C as it sounds like Ray may feel that B-1 may be the cause! When he has taken breaks to reset his B-1 protocol, have his knees improved or stayed the same. That should provide you a clue and potential feed back to Dr. C. Also what has your regular doctor said about Ray's knee issues?

You need to address "all of these issues" with Dr. C when you write him so he can be fully informed and when he is aware of all of your issues, he can provide the two of you with the best suggestions going forward and you will not have to feel confused the way you are now.

I'm not saying to follow Dr. C blindly, but I am saying that you have to communicate all pertinent issues to him in order to get the best response from him. If his latest reply did not leave you satisfied or you are having doubts and concerns, then you need to say this to him. If his answer is too short or you feel it is incomplete, then let him know this. If he did not completely answer a question or concern that the two of you might have, let him know. Good communication can mean good progress and poor communication can mean poor progress.

Based on Ray's initial response to B-1, you already know he is a responder. The fact that you feel he has gone backwards should also be communicated to Dr. C. These are all facts that he needs to know in order to make a proper evaluation and if you don't tell him, he can not make the best recommendations for Ray !

Lastly, when you use the translator, please include the English version as well as the Italian version of your full message. It's morning in Viterbo and possibly a good time to write to him.

Art

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Wow, Art, THANK YOU! Yes, we have mentioned to Dr. C. my husband's knee ache and hamstrings stiffness. He has not replied to the issue. Yes, Ray has iced his back but only a couple of times. He is not the type of person to rush to do whatever is best for his health, he is a laid back person. :(

In every update we send to Dr. C. we include current symptoms, vitamins/supplements, MP, etc. Dr. C. never mentions anything about them, he only refers to the pull test, and adjusts the dose according to the pull test. We try to include as much information as possible as you suggest.

What is QOL? :)

I am thinking of making an apt with an Orthopedic, but we might try our chiropractor first. So hard around here to make a medical appointment with a specialist. The waiting list is very long and could be several months down the road before we can get an appointment. :(

Yes, we always include our English version in all our emails to Dr. C. This morning his reply was in English. :)

PS. There was a minor improvement this morning--HE COULD SMELL the chocolate he added in his oatmeal--don't even remember when was the last time he did that!

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Despe,

QOL= quality of life.

I was just reading something that might apply to Ray if he is taking mucuna pruriens and since Dr. C has no experience with mucuna, he would not be aware of a possible problem with its usage. Does Ray use mucuna and if he does, at what dose? Apparently at a high enough dose, it can cause muscle and leg pains as well as muscle tightness and I thought Ray mentioned those two issues! Here is a link to a discussion on that topic:

longecity.org/forum/topic/7...

I didn't think chocolate had that strong of a smell in small amounts. Coffee on the other hand seems to have a fairly strong smell even at small amounts. Has Ray even started at the increased B-1 dose yet?

Art

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My husband is not yet settled on a specific brand and strength of MP. He has experimented with Zandopa (1, 2, and 3 scoops included in the plastic container). Saw no difference. He also experimented with Barlowe's seed extract 650mg 40% L-dopa capsules, 2-4 a day. He felt like he was "high" as he told me taking this MP. So we decided to lower the strength of L-dopa and he is now on Mucuna L-dopa 20% my Keter Wellness. Actually he started this one today and has only taken one capsule (140mg ea) so far. He appears to be doing a lot better today. He also had his second injection of the week today, and he will start the increased dose this coming Monday (we got Dr.C.'s recommendation for dose increase this morning).

A couple of days ago he had two teeth extracted and don't know if the anesthesia had a negative effect on his condition. They were broken but the local dentist had capped them not long ago! We finally went to a dentist one and a half hours from our town who specializes in removing mercury fillings. The dentist removed the mercury fillings, and he also diagnosed localized infection in those teeth that were extracted after the diagnosis. My husband kept complaining to our local dentist that his capped teeth were still hurting, but the dentist asked him to use fluoride for the pain!! Of course, he didn't use fluoride as we know what fluoride does to everyone's brain health!

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Anesthesia is known to have a negative impact on PWPs and an infection would not be helpful at all! Those two things could easily cause some setbacks! Did you mention them to Dr. C?

Art

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No, I didn't as he had the extractions on Tuesday, and I didn't know I had to mention to Dr. C. My husband is emailing him as I am writing this post.

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it is better that he is aware of everything that could affect , Ray, so he can take that into account also as an underlying infection can have a negative impact .

Art

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Some time ago I read that nitrous oxide is particularly bad for PWP.

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Thanks, Julie. There was no other way but to have the teeth extracted. Unfortunately, in the US, they don't use local anesthetic unless you ask for it (which I did for my own extraction about a month ago). It's all about $$ as the anesthesia is twice the cost of local anesthetic. In my husband's case, the oral surgeon had to cut the gum to remove the broken tooth. He wouldn't perform the surgery with local anesthetic and no other oral surgeon was willing to do it with local anesthetic. Don't know what is worse the infection or nitrous oxide. In any event, the tooth had to be extracted. Fortunately, it was a localized infection and not a systemic like the surgeon explained.

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Is there anyone else on three injections a week here in HU?

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Despe

for example me I take 3 or 2 x 100 mg IM b1 at week on advice by dr C, at my discretion, I sometimes jump a week every 5/6 weeks always at my discretion ;

or Enrico Moraca the first Italian on HU , who talk about dr C , two years ago in this conversation . Read all it is no long and he talk about 3x 100 mg at week.Gio

healthunlocked.com/parkinso...

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Thank you, Gio! Always willing to answer questions! How is Enrico Moraca now a days?

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Good question!

You can ask him.

in his last reply to Lucal would seem all right.

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I am very happy for him! Does he still post here?

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Incredible. Thank you. Is there a preferred form of thiamine/B1 available in the U.S.? I can’t seem to find the right one.

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I'm using Solgar, 500mg tablets from Amazon. I chew them, one in the morning and one in the afternoon.

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Thank you. I’m on it! The ordering process that is.

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Dear Art,

Thank you so much again for this remarkable endeavor! #79 is definitely our favorite and we do hope the more patients the possible can one day tick that box as well.

Best regards

-Marco

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Thank You for the list. I agree with jujulini, "It's good to have them all in one place....

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Thanks ,good info

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It would be more helpful if you would add the percentage of patients who get these benefits?

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yes, it may be more helpful, but that is asking alot, as im sure it took many hours for art to put that list together. perhaps you have the time to volunteer to compile info on percentages.

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I am not the one promoting B1,

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Maybe you should be, unless you have something that works better.

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I really, really hope that B1, or something, works, But I am 83 and over the years, I have seen these fads come and go,

Like all scientists I am a skeptic.

My PD seems is improving with standard treatment with no supplements, vitamins, exersice program or special diet. Most of those 80 benefits apply to me. The list needs to be offset with a list of side effects

I attribute my improvement to luck, and I hope you are lucky too, with decreasing symptoms, whatever you attribute the improvement to.

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Condor, I trust that you do hope it works and I believe you're skepticism/concerned that people not be given false expectations. Allow me to make 2 points regarding that. 1st, Art has has said over and over, in many different places that it is not going to work for everyone. 2nd, I believe everybody on this forum understands that what works for some doesn't work for others. The only thing Art is doing is organizing and consolidating the pertinent information so it's more efficient for readers.

I'd like to know more about your condition improving without nutrition or exercise playing a role. I've not ever heard such a claim before. We know with certainty that the pharmaceuticals are not causing that. Being a physician, do you agree that for your illness to be improving, something is happening on the cellular and molecular level?

It feels contradictory to me for a physician who in addition is a skeptical person to attribute an improvement in Parkinson's disease something as amorphous as luck??

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I am 56yo I have to keep working, I have a wife who is to help, I was physically destroyed and now I can do it. Sorry Condor if I am not so skeptical, but I have not been as lucky as you and I had to try. For now I go much better than before.😀PS I use thiamine IM injections with the recipe and the side effects are written on the package insert as you well knows.

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Excellent work, Art! Good to see an organized compilation of various attributes, here, on HU. Personally, I have experienced and contributed to a few of these “80 points of light” and most uniquely #44. Note that I also take a low dose Rx & a few supplements listed in my profile but attribute my gains to high dose thiamine over the past several months (finger snap/strength improved, reduced foot drag and improved -but “not cured” gait & arm swing).

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Hi AmyLindy

If you have been taking Thiamine for a few months and still have reduced arm swing or if hasnot been improved, then I think your Thiamine dose needs an adjustment.Please ask for Dr Costantini’ advice. He might tweak the dosage.

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11/1/18 Correction: 4gm/d. But I am already at 2gm/d (8 tablets). I never thought of potential for change, (potentially upward) or maybe even injection instead of tablets? Perhaps I will check with him. Thanks Kia17

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"2 grams / day (8 tablets)".

I have not seen 250 mg capsules or tablets, is that what you are using? If so, where did you get them?

Art

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Eeks: Correction 4 grams/d, Good catch, Art!

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Art, since you invited people to write out a "cons" list (reasons for not trying B-1,) and nobody has, I should (repeat the list I wrote on the other thread for those who missed it) to ensure people fully understand the arguments on both sides the decision. I don't mind going through the same exercise you did to write your list.

1. My doctor doesn't think it'll help.

2. It may not help.

Well, that wasn't as much work as I thought.

Marc

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Marc,

Lol!! You got me there!

Art

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Marc,

I personally can not follow you. My personal doctor has read the research of Dr. Costantini and told me: "In your shoes, having Parkinson's and knowing that the b1 is safe, I would try it" and gave me a recipe for the first six injections of b1 . So I'm trying to write something else.:-)

Gio

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