I've been following the many posts about Dr. Costantini's high dose vitamin B1-thiamine protocol, and came across this comment in another post:
"I have sent dr c video's- dr c has told me i must start sinemet 25/100 along with B1 because they work synerggistically."
This seems to suggest that in order for the B1 protocol to have the most benefit, then sinemet should also be taken concurrently. This is the first time I recall seeing this. Does anyone have any additional information about this?
PixelPaul,
It should be noted that Dr. Costantini has been a neurologist since well before he even started testing thiamine / B-1/HDT, so Sinemet and similar are second nature to him and what he was already treating his patients with prior to B-1. His experience is that B-1 can be additive to standard PD meds and he has also found that when B-1 alone is not enough to reduce symptoms satisfactorily, adding Sinemet can have an additive effect to the B-1.
He has been fairly clear on the idea that the proper dose of Sinemet in conjunction with the proper dose of B-1 can have the best effect on motor symptoms. In his way of thinking, the combination is very powerful in terms of motor symptom reduction. He does not use Mucuna in his practice, so he has no experience with it and therefore sticks with what he knows, sinemet and B-1. Some forum members have very significant experience with Mucuna in its various forms and have shown that it has synergy with HDT in a similar fashion to Sinemet and other C/L forms. Which makes sense.
Here is a description of his thinking on that subject. Look at Q&A #32 :
healthunlocked.com/parkinso...
It may be useful to book mark that page in some way for future use as it answers 52 frequently asked questions about Dr. Costantini's HDT Protocol. An alternative to finding these detailed thiamine posts is to click on my icon and that will show you 14 posts that I have made. Just select the post you want to read or review. If you opt to follow any of those posts, you will be notified when the one you are following is added to. If you select to follow me, you will be notified whenever I post.
Art
Thank you Art, your informative post is most appreciated!
PixelPaul,
You are welcome! Something that I only recently learned from Dr. Costantini about B-1 that I think is interesting is that if you are a responder and it seems the majority are, it already appears that HDT slows or halts disease progression for at least 5 1/2 years plus, which is the limit of experience that he has with his PWPs on HDT, but during that same period, PWPs who were taking sinemet with their B-1, never had to increase their sinemet dose and in some cases were able to reduce their sinemet dose once started with B-1 and the correct dose was found. This is addressed in Q&A # 51 on the thiamine FAQ page.
I find that interesting because the normal course for Sinemet is that it requires higher dosing over time and in some cases it no longer works effectively even at the highest possible dose! That problem may be a rear view mirror option now with the addition of B-1!
Art
Hello Art
What do you mean by "if you are a responder...."? Did you mean someone who responds positively to Dr C's B1 protocol?
When B1/Sinemet works, does that mean the absence of 'off' periods?
thank you
FYI......this was dr c email to me. he has since moved me to 3g a day as the 3 weeks have passed. no improvement and i will email him again next week. but interesting that he took me off sinamet and he has not told me to restart it. chris
"Dear, for now do not take levodopa. follow the instructions below. Soon you'll be well and forever. Dear , read below that you have to do, I emphasize only one thing, if during treatment your symptoms seem to worsen this is a sign that the dose is excessive for you. In this case, the thiamine is suspended, you write to me and we will agree on a lower dose. The thiamine patient should only have beneficial effects during treatment The oral dose we suggest for the patients with your condition, your onset and weight is 2grams of thiamine HCL/day, 1gram in the morning and 1gram for lunch. The dose of thiamine in the future can be increased or even decreased depending on the result obtained. Let me know in 3 weeks or and when you think it is necessary. Gradually we will reach the right dose. You'll soon be much better and forever."
chrisz,
That is interesting! Are your symptoms relatively minor? Is the fact that you have not been taking Sinemet for awhile causing your symptoms to worsen? It sounds like Dr. Costantini wants to see exactly what B-1 alone can do for you?
Art
i do not feel my PD symptoms are mild, in fact, they're annoying the heck out of me. I read on my regular PD drs notes that he labeled it moderate. I have all the usual symptom suspects. Next week when i give my 3 week update at the 3g dose, i was going to ask if i could go back on sinamet with B1 as I've had 0 improvement. Not sure how to judge improvement from B1 if one takes sinamet because of course you will get symptom improvement on meds. i get the whole synergy thing, but how to judge the B1 affect?
chrisz,
It seems to me that either Dr. Colangeli or Dr. Costantini may have said that people who are relatively newly diagnosed may be able to get by with just thiamine, but I am not positive on that point. Based on that possible memory, I wrote Dr. Costantini today to see if that is correct. When he replies, I will add that answer to the thiamine FAQ page as I'm sure that is a common question or thought for people who are at a very mild state or are relatively newly diagnosed.
Although some people report benefit in the first week or even the first day of taking B-1, some people report no benefit for the first 3 to 4 months and then symptom improvements seem to come on slowly from that 3 to 4 month area with improvements that can continue to expand to 6 months and well beyond. Dosing and response is very individualized with B-1, so one of the most important things that B-1 testers can have is patience to allow B-1 to do its job! I know that that is easier said than done, but in the bigger picture, it may be very well worth the effort!
You did not say if your symptoms have worsened since discontinuing Sinemet?
Art
i am not newly diagnosed, this month makes it my 4th year, but obviously was having symptoms way before that.
Of course getting off sinemet, which had been managing my symptoms, allowed them now to be re-expressed.
Do you understand how to know if symptom management is due to meds or B1?
Well, to me, 4 years since diagnosis is a relatively recent diagnosis.
It sounds like Dr, Costantini may be trying to see if you can make it on B-1 alone since your diagnosis is not very old. I was correct that some people can get by with just B-1! I think Dr. Costantini is testing the B-1 to see if it will be sufficient by itself, but he has to get you to a dose where you start to respond and then he has to fine tune from there, but some people don't start to see improvement for 3 to 4 months, so patience is definitely required! I know it is strange, but Ernie started seeing benefit within hours of his first dose and park_bear had to wait 3 to 4 months before he saw any results! Very individual responses to B-1!
Stay in touch with the doctor for best results! It took MBAnderson 8 months to see measurable results
Art
Excellent question! Do people swing arms when they are on meds or MP, or is it the result of B1 and mannitol therapies? My husband's arm swing has intermittently returned but I don't know if it's MP, B1 or mannitol that restored partially his arm swing. Guess, take it or leave it. 
Is it possible Dr. C thought you were not already on Sinemet? How much Sinemet were you taking and how long since you have been off? Did you titrate off or just stop? This is the first instance I've seen that has Dr. C recommending a PWP go off levodopa. Maybe something got confused in the translation.
The return of symptoms after going off Sinemet can be severe (I know, having done it).
I gave dr c a list of meds/supplements on the initial email.
I originally was taking sinamet 3x/day 25-100, going down to 1x/day, then off.
I’ve been on this journey for about 2 months trying to find the correct B1 dose. I understand it can take longer to get results, but how to determine the benefit of B1 versus sinamet? So it sounds like being on B1 alone without sinamet I shouldn’t see any benefit as there’s no synergy?
Possibly it is a translation thing but he didn’t type in his email the whole synergy theory.
chrisz,
Dr. Costantini may have thought your Sinemet dose was fairly low and that may be why he is trying to see if you can make it on B-1 alone. He doesn't normally have patients stop their sinemet/ levodopa. If you have questions about it, you should ask him!
Your second statement may not be completely accurate, as some people can get by with just B-1!
Yeah, Dr. C realizes that Deep L Translator has its limitations, so he generally keeps his replies short to try and avoid confusion, but whenever you are not clear on something, write him back quickly so you can eliminate any confusion!
Art
I know there are some PWP taking B1 who are not taking a version of levodopa, but I believe those people were not taking meds when they started on B1. What I have gleaned from reading about Dr. C's communications is that he generally recommends taking B1 with Sinemet for optimal benefit. Going off levodopa can be difficult and sometimes traumatic. The withdrawal can be unpleasant and certainly might be worse than any benefit offered by B1 while in the withdrawal phase. I speak from personal experience regarding the withdrawal phase after only four months taking 25/100 c/l 3x (or less) daily.
Juliegrace,
I am aware of some of your experience and I would say that your resilience is nothing short of impressive! You have managed to keep going at this disease in spite of some very significant setbacks and you remain very focused all the while! Props to you!!!
I will post a bit more tomorrow about the use of thiamine on its own. Probably not applicable for you, but possibly for other HU members both present and future!
Art
I know there are some PWP taking B1 who are not taking a version of levodopa, but I believe those people were not taking meds when they started on B1. What I have gleaned from reading about Dr. C's communications is that he generally recommends taking B1 with Sinemet for optimal benefit. Going off levodopa can be difficult and sometimes traumatic. The withdrawal can be unpleasant and certainly might be worse than any benefit offered by B1 while in the withdrawal phase. I speak from personal experience regarding the withdrawal phase after only four months taking 25/100 c/l 3x (or less) daily.
Oh, yeah, I agree with Julie ,who wouldn't want to remove the ldopa...
For my opinion ,to do without ldopa depends very much on the severity of the lesion, i.e. the stage of the disease. If the dat-scan detects the PD you already need. I always hope for a better formulation of the ldopa since with the thiamine after three years I can say that I am almost stable.
Gio
I saw Dr. Constantini while in Italy last month, September. He suggested I use Sinement too, however Mucuna has been successful for me and I don’t plan at this point in time to make any changes. I was taking 3 to 4 Mucuna capsules daily, now I’m taking 2 to 3 capsules 40% Barlowe’s.
Started B1 in April. Have experienced symptom reduction’s both motor and non-motor. Doing extremely well, life is 94% of normal.
I’ve had PD for just under four years. 56 years old. Running my company, traveling, Going out to dinner, getting manicures and pedicures and my hair done without any real trouble. I slow down a little in the evening but not every day anymore. It’s amazing!
Constance
Just ordered Barlow’s hope it works for me. Thanks for the recommendation. I've been using bulk powder 100% Mucuna from nutrivita, but I'm flying so I'm going to rely on this recommendation. I like their presentation.
Please post on how well it works for you, the 40%, I mean. Hopefully you have time to figure out the dose before you leave for the DR. Safe travels, BTW.
Which brand B1 do you take?
How many mg per tablet?
Take together or at separate time from munuca/sinemet? how long apart?
Thanks
Cons,
I like your post. I am newly diagnosed, looking for advice. Would you tell me please how much B1 you use to see the result ? I also don't want to use Sinemet( I have shivering) and started Mucuna 15% (50 MG) 6 capsules a day. I will increase slowly.
How many mg per capsule your brand. I used to be like you: dinner out,movie, walking, nails.. not anymore. Last 6 month is horrible. Thank you.
Yes, I read that too. It's what Constantini proposes in his own paper--that possibly what B1 does is improve the function of EXOGENOUS dopamine (that's the dopamine you are taking, not what you are making in your own neurons.) If that's correct, if shouldn't especially help if you aren't on sinemet yet.
from Constantini: ....We suppose that the improvement of the energetic metabolism of the survivors neurons in the substantia nigra, due to the high doses of thiamine, could lead to an increase of synthesis and release of the endogenous dopamine, to an increase of activity of the thiamine-dependent enzymes, or to a better utilization of the exogenous levodopa (Jiménez-Jiménez et al., 1999; Lu’o’ng and Nguyên, 2012; Costantini et al. 2015).
Brendanpederson27@gmail
So I guess the next question would be:
Is anyone experiencing benefits from the B1-Thiamine protocol without taking Sinemet?
Yes, I am experiencing benefits without Sinemet. I take 1mg Rasagaline (Azilect) as my only PD meds. Have now found , after experimentation, that 500mg of B1 seems to the right dose for me, ( 300mg first thing and then another 200mg at lunch). Improvements are better sleep, better concentration, improved energy levels, decreased bradykinesia on affected side, increased gut mobility, (my stomach is now back to grumbling and rumbling and I have increased hunger pangs), sense of smell is returning intermittently. Diagnosed November 2015 with very mild pd that was expected to progress slowly. I also have increased my exercise regime to include fast walking (thanks to John Pepper), Qi-gong, Strength work, Mobility and flexibility free flow movements. All in all my symptoms seem to be on hold and improving.
Hi pjokeefe which Qigong are you doing and does it help or B1? Thanks
Hi TL500, I am doing Qigong for healing. I really don't know the form that the teacher has based her lessons on, but I am finding Qigong beneficial. It helps with balancing and strengthening both sides of my body, my right hand side being weaker is responding to the flowing movements and I am finding that I am using my right hand almost normally and spontaneously. I am doing a lot of other exercise as well eg dedicated walking with exaggerated arm swing, strength training at the gym, cardio and I am also using mobility body movements from the "movement culture" as promoted by Ido Portal. The B1 has also made an enormous difference in lessening my symptoms and dare I say it, almost stopping progression.
They are!
Art
Hi Art is the need to increase B1 dosage as time goes on?
Generally, what has been reported is that once an effective dose is found for the individual, there is a possibility that after some time (months) some people have found that they need to reduce the dose a little in order to fine tune to the best response to HDT.
Art
thanks. high dose and long term use don't damage the liver etc?
In Dr. C's 5 1/2 years plus of HDT use in his patients, no liver toxicity has been seen. On this forum, I think the longest someone has been on HDT is around three years and again no liver damage.
You can also google thiamine and liver toxicity.
Art
How about these PwP who are on MP or no dopamine meds at all? Can B1 alone be effective?
Well I use mostly Mucuna pruriens and I'm under the impression that the Mucuna pruriens (which is 100% so really it's just levadopa) works with the B1 because as I take them together it stops the tremor completely to the point where I feel like wow 😲 this thing is a miracle cure it feels as if I don't have Parkinson's (do not misinterpret: the symptoms do return). I do take sinemet and amantadine occasionally with the B1 and that combination does not result in a miracle of no tremor. At the end of last year when I was first prescribed sinemet sometimes I would wonder why pwp use that stuff as it didn't do anything for me, but eventually I realized it does bring some relief 😌.
Thank you for your insight. My husband is also on MP only, no meds. On a break right now from B1 until I email Dr. C. and get the new dose. If natural levodopa works why take synthetic? I just wish Dr. C. could advise patients about MP, too.
Maybe MP composition is too variable- as all natural compounds. Dr C seems to be 100% comfortable w Sinemet (due in part to its Standardized dosage, I presume ). I wish my neurologist could dose it, she agrees w it but can’t recommend it over standard meds. I’m on low dose Selegiline 5mg and 4gm HDT w great results! Would like to use MP but frankly- Selegiline is working and no side effects. I may try removing it to test purely the HDT for 4-6 weeks after holidays.
Yes in some people.
Art
Thanks, Art. My husband is on B1 break right now according to Dr. C.'s instructions. Will email him this W/E to get the new dose. I am still confused about vitamins/supplements that some people take and some don't. Dr. C.'s advice on vitamins/supplements varies. Personally, when I originally emailed him, I had given him a list of vitamins and supplements my husband was/is taking and he (Dr. C.) said that my husband can continue with his vitamins' protocol.
Despe,
You know me, I am almost always going to suggest following Dr. C's advice, because although many people on this forum have a lot of experience with many things relating to PD, I don't think anyone knows more about B-1 in combination with meds and other supplements than Dr. C and aside from his many attributes, he is very focused on almost all aspects of this protocol!
Art
Art, I agree with you. I will email him this W/E, and I will repeat the vitamins/supplements question.
That would be interesting to know.
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