I am new to Health Unlocked (HU). I recently posted asking for suggestions/experiences of alternative therapies for managing PD medication free. High Dose Thiamine B1 therapy was highlighted as something to consider.
Having done some reading and visited the recommended websites I feel I would like to give it a try, but first wanted to ask a few questions to those who have used, or are still using it, to help manage their PD. Basically I am asking so as to try and avoid any pitfalls.
Here are my questions:
1)Treatment protocol is the result of Dr Constantini’s research. Sadly his website highdosethiamine.org/ states that Dr. Constantini has passed away due to contracting the coronavirus earlier this year. I note from posts on HU that some people have contacted his clinic and received advice/guidance. Is this the preferred way to do this and if so does anyone happen to know whether his practice is still accepting email referrals and willing to help/guide people like me?
2)From the links to various sites I noted they mention doses as if it is possible to self-treat, but there is some range with one recommendation saying start as low as 25 mg and another stating start high 2 g and then reduce if PD symptoms worsen.
I would really appreciate any advice on getting started, in particular the starting dose.
3)For those already on the protocol I would like to ask whether you are using tablets, capsules, liquid (liposomal) or powder Thiamine B1 and depending on your answer are there any brands you recommend and any to avoid?
For example on b14pd.com/ lists a couple of suppliers of 500mg tablets which at the 2 g dose = 4 tablets per day ( 2 at 8 am & 2 at noon). However, it means that any fine tuning would be to within 500 mg. Is anyone using 100 mg tablets in order to better fine tune their dosage?
Also does dose change depending on whether it is in tablet, capsule, liquid or powder?
As someone who suffers slightly with my swallowing I fear taking lots of tablets twice daily may make things difficult.
4)Finally I note that the recommendation is to avoid B6 if on PD medication as there may be some interference of uptake. Does anyone know whether if you are not on medication it is ok to take B6 as part of a B complex and whether it is useful to take the extra B vitamins in addition to high level B1?
Basically any suggestions/advice on how to get started safely will be gratefully received.
Thanks in advance to anyone who takes time to respond.
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I tried searching, but found a lot was coming up around two years ago. Just in case suppliers and dosages etc had moved on I decided to post. Apologies if it creates another B1 post.
And one more thing do not slight any information on this site because it’s a few years back. Quite a few of these threads are a treasure trove of information 🌺
Hi CaseyInsights, no offence was meant. I certainly didn't mean to 'slight' anyone's earlier posts. Quite the opposite, in so much as that I realise without those 'pioneers' and the posts they made we wouldn't be where we are today and I wouldn't be in a position to ask for advice. Something I am very grateful for. Hence please accept my apologies if it came across as causing offense in any way.
I recommend that you consider looking into Lipothiamine instead. It's a tiny tablet and the TTFD B1 form does not depend on transporters to get past the Blood Brain Barrier. The need for a high dose B1 hcl thiamine is to pass the BBB through passive diffusion with inefficient transporters, but for many finding the correct dosage can get pretty tricky over time. Lipothiamine is an enteric coated TTFD and a 50mg pill is pretty tiny (even compared to Allithaimine) and you can start with just 1 or 2 pills a day.
You should NOT avoid B6 since C&L med will deplete it and having a deficiency is actually very bad. You just need to be mindful not to supplement B6 at the same time with your PD med and space it out at least 2 hours or as furthest away as possible.
Hi rescuema, thanks for the suggestion of Lipothiamine. I will do some research and try and get up to speed on it. With regard to B6 thanks for the advice. As I am not on any PD medication I'm hoping that I won't be causing any issues if I also supplement with B6, B12 etc. as well as the B1 HDT.
I recommend you start with reading the below at least. As for B's, look into Pure Encapsulations B-Complex Plus - it's a good methylated B complex which includes 100mg B1 HCl. Also recommend you supplement Magnesium L-Threonate (also to pass the BBB, take it before bed to help with sleep) along with B1. It's a good idea to take Jarrow's Zinc Balance (both Zn and Cu) since most PWP are deficient in Zn.
When B6 is taken with C/L, they deplete each other, which is why you shouldn't take them at the same time.
Think of B1 as a team leader or a spark to an engine - other nutrients such as B vitamins, Zinc, Mg (required co-factor for B1), etc. are actually needed to allow the whole process to flow. Any missing nutrient would be akin to a missing cogwheel of a clock, especially if you don't have an ideal diet/absorption. They can be taken together or at different time of the day without issue. Allithaimine is more affordable and also works well (I alternate this with Benfotiamine for higher peripheral absorption) but the pill is a standard medium capsule size. Start with one 50mg pill for a week, then slowly titrate up as long as you don't notice worsening of symptoms, inflammation/back pain, etc.
NAC can help with detox and oxidative stress. The Science Of Parkinson site wrote a very good article worth your time, so google search it (I’m in bed typing on a small iPhone). Some people also notice good result with glutathione therapy although it can’t directly reach the neurons as NAC could help with endogenous production. I assume supplemental glutathione helps because it still offloads oxidative stress.
Tyrosine is a precursor of catecholamine/dopamine and it unfortunately gets exhausted with levodopa where the deficiency obviously gets problematic. I am for supplemental amino acids when done cautiously and correctly as with 5-http (to help depleted serotonin) but finding the correct dosage without tipping the delicate balance will be tricky for most people.
Thank you. It's overwhelming to sort out a supplement regimen. I'm 46 and 12 years in and am lowering my drugs rx load by diet and vitamins. Moving deeper into this research as schedule permits.
Yes supplements are not all benign and I cringe to see people taking some of them without due diligence while they’re so readily available. They should be treated as drugs and to supplement correctly can get trickier than simply taking the prescribed meds. It definitely requires intelligence and a lot of work and trials.
Originally, Dr Costantini would start his patients at 4 grams/day if they were under his monitoring via email. That is no longer possible and very few of his email patients needed 4 grams as he later found out that for some reason his Italian patients had a higher tolerance for HDM than his HDM patients from other countries. On this forum, the lowest reported beneficial dose has been pegged at 25 mg/day while the highest effective dose has been reported at 4,000 mg / 4 grams / day. Just as a guess from the hundreds of HDM posts I have read, I think the greater majority of members have found their effective dose in the 1,000 mg to 2,000 mg dose range. People with more severe symptom issues and people with greater body mass generally seem to require more and smaller people with milder symptoms seem to require less and even after you find your effective dose, there may come a time when you need to adjust that dose downward.
Part of what thiamine does for some people is to have a positive effect on the gut biome resulting in decreased or eliminated constipation. Here is a link to a post with all of the information I have gathered from Dr. Costantini in direct reply to this forum's questions, by Dr. Costantini.
Many thanks Art for your reply and insight. The link to those HU questions and answers with Dr. Constantini makes for informative reading. They are an invaluable resource. Even more so following his passing away. Thanks for collating all the answers.
There is a lot of information in there that may otherwise have been forgotten, so having the information on site can be useful. Just knowing what benefits forum members have gotten from it can be useful. Dr. Costantini gave us the information as time allowed him to and now that he is no longer with us, His answers and ideas live on!
Hi Art, I m a Chinese weighing 65kg, taking madopar 100mg/25mg 4x a day, selegiline 2x n requip 1.5mg 3x. I guess I should start with 1g per day. Lower dose hdt for non Italian
B1 can worsen symptoms when it is too high, but Dr. Costantini said a worsening caused by B1 will only be temporary until the B1 level declines low enough again and that has been reflected in forum feedback. If you have not already read this and the link at the bottom of that page, you should :
Hi. I hv written some posts on my B1 journey so look them up- tells how i recorded my experiencesas ittook a while. In answer to your questions- i dont believe Dr C's collegues are replying to queries at the moment
I would start with B1 and no other additives so you can evaluate B1 progress
I open my capsules and take the powder neat under my tongue- no worries with swallowing
I think capsules, tablets hv same results it just what you prefer the only difference is if you have the injections but this is talked about on HU B1 pages.
Dr C was a wonderful man who has helped so many of us. Good luck on your journey
Hi, i tried this morning with B1 grind powder with water n I don't like it as some powder seems to get stuck in the throat. I tried half tablets at a time seems alright. Cheers
I found this site just after Dr C suffered his stroke after his surgery. How wonderful it must have been to have his guidance but here we are without him.
My husband with PD started the thiamine protocol at the lower dose and worked up slowly. Like you he wasn't on any meds.
Since you are interested is the thiamine protocol, I would follow the advice of @chartist above.
You're responding as if you have an issue with TTFD. Would you explain your particular position? I seem to recall that your husband started with Lipothiamine.
Welcome, Newbie. I started with 100mg B1 HCL capsules 2X per day for a week. Taken in the morning and at midday. I think they want to avoid taking this around bed time to avoid potential sleep issues. Make sure your B1, on the ingredients label says "HCL" (hydrochloride). The following week, 200mg. At the 300mg mark I noticed an increase in symptoms , and so, reverted back to 200mg for another week. I worked my way up to 500mg and stayed there for a while, noticing a positive effect on reducing symptoms.
Hungry for more, I worked my way up to 2 grams (2000mg) per dose. I have found Vitacost 500 mg HCL capsules to be the best and it is the one most often recommended around here. Yes, you can always fine tune with 100mg capsules. I still have a jar of B1 caps hanging around.
To avoid problems with swallowing a lot of capsules, I swish them around in my mouth for a few seconds, making sure they all become coated with the liquid you're getting ready to swallow them with. This coating will make them slippery and avoid getting stuck in your throat.
Yes, I supplement with B-Complex, B6, B5, B12, Folate etc. but make sure it's in the middle of two PD doses. For me that would be roughly 9:30a.m. between my 6:00a.m. and noon doses. Good luck!
On the road to 2000mg I received reduction in symptoms, but not with every increase. That is, when I made the jump from 1800mg to 2000mg (I was eager here, and didn't want to wait around for a week of 1900mg's) I don't believe I noticed an increase. I should add, that, to my late afternoon /early evening dose I've added a 500mg B1 capsule because it is very noticeable when the B1 is not taken with the Stalevo and mucuna pruriens.
Thanks mgregor6, I really appreciate the overview of your personal journey with HDT. Some great advice too. Wishing you all the best with your continued journey.
I also love unfortified organic nutritional yeast. I mix it In with beans and other dishes to give extra flavor. A delicious and one of the best ways to supplement b vitamins.
Exactly. The biological activity of thiamine whichever form is the same once it gets where it needs to be, i.e. in the brain. Some people are genetically compromised with thiamine transporters to properly absorb B1 HCl, so they tend to do better with TTFD, benfotiamine, or through sublingual methods.
If sublingual B1 or TTFD are just as effective as standard HCL (with considerably lower pill ingestion requirements), why didnt Dr C mention them, given that he was quite conscious of swallowing issues and the pill load? It's difficult to imagine he was not aware of their existence, given that he was quite the thiamine enthusiast, having written papers on thiamine's potential in diseases other than PD.
As for this: "tend to do better with TTFD, benfotiamine, or through sublingual methods."
Have you actually heard from any PWP that have 'tended to do better' with TTFD or bentofiamine? Because so far as I can see, the only person mentioning them on HU is you.
That is because you have not bothered to check the past discussions nor read the many studies on thiamine to understand the underlying mechanisms. Dr. C was perfectly aware of TTFD.
As I said, difficult to imagine that he wasn't aware of it.
So why didn't he recommend it, given he was conscious of swallowing and pill load issues? No, I haven't read every study into thiamine. Since you apparantly have, perhaps you could let us know.
Dr. C chose B1 HCL because of its ubiquity. TTFD wasn't as readily available, especially for patients in his local areas in the earlier days. Since you're not aware, not all patients took the pill route - many went with B1 injections initially. He came up with the HD oral dosage later to accommodate others. Read the FAQ at the least, will you?
Instead of needlessly being so snippy about it (I'm not 'trolling' as you keep putting it, providing some context to the OP isn't trolling just because you don't happen to like it), perhaps you could provide a link to where the doctor addresses TTFD or even sublingual B1?
I already responded to the OP with the relevant links above - you might want to bother checking them out. Dr. C wasn't the only one with the expertise to B1 deficiency symptoms (this was heavily researched by the Japanese due to Beriberi), although he was the one with the most experience with PD patients.
If you really want to understand in-depth, I highly recommend this book.
In which link did Dr C directly comment on TTFD or Sublingual or any of the others that are easier to ingest? Can you copy the paragraph?
According to the FAQ, he mentioned getting the 500mg pills from the internet (which makes sense, I have never seen them in pharmacies). Its strange that he contemplated internet sourcing yet didn't include references to the forms you describe, given he was conscious of swallowing and pill load. I'd be surprised if at least sublingual b1 was not available online back then.
I can see that you are very well read on thiamine. And if the answer to my question is "Dr C's advice would have been improved by more frequent recommendation of the easier to ingest forms" then i would accept that. He certainly wasnt infallible: his claim that thiamine stops progression is certainly being put to the test.
You think I am trolling you but if you remove your prejudgement of me, my queries are fair: we rely heavily on Dr C for this stuff re PD (and you are certainly willing to accept his conclusions at face value when you like them), so it seems odd that he wouldnt mention this obvious advancement in treatment.
Why do you even bother to question when you don't even believe in any alternative therapies including B1 nor Dr. C's patient results? I am not going to do the homework for you. You do your own research if inclined. Plenty information is out there.
(The nitrate was an early false start). There's load of other non-prescription stuff on my shelf too, including stuff YOU have recommended.
I am just asking questions about it. If you are unwilling to answer them, that's fine, but you ought not paint others as trolls because they aren't lock step with literally everything you post.
My question was why weren't they his first choice (pill wise) if they are as effective and considerably easier to manage? In part, it has kinda been answered (retail availability).
I am aware that you are triggered by any and all questions about B1.
Your conspiracy theory stuff about me is pathetic.
These have been mentioned here before. They crumble in the jar a bit and I wouldn't say they are delicious. Whether or not they provide the same (as having 2 grams a day or whatever of the larger pills) delivery of B1 to where it needs to be is not something I am clear on.
The sublinguals are not as effective as other forms but some people do (not all) notice benefits, just as many notice better absorption with B12 sublingual vs pill that you swallow. One of the reason is because sublinguals bypasses the gut absorption issues, especially in the presence of thiaminase producing pathogens/gut flora and intestinal thiamine transporter issues. For example, the sublingual mononitrate is not lipophilic as in TTFD, so it is not nearly as efficient to pass the BBB. Benfortiamine and TTFD are exponentially more bioavailable and do not depend on transporter activities.
I guess I don't know 100% it's the same, but I have read it is. I have chatted with a couple of people that take only take 1 a day. One lady has had to reduce it, and only takes one tablet 4 days a week. I am on so many meds for different things. My poor stomach! So I am looking for ways to cut down on pills I swallow. The sublingual tablet is bitter. One needs to keep it under the tongue. No talking even, because that makes your tongue move. It dissolves very quickly.
I use Superior Source 100 mg microlingual instant dissolve tablets. I am taking one a day right now, but have only been on it about 2 weeks. I wish there was a PD guru out there to help me, or better yet, that I didn't have it. Since those things aren't going to happen, all I can do is try things. One of the women I chatted with said her Dr. told her she'd need less since it goes straight to the bloodstream. Good luck everyone, finding a path that works for you!
Notably, Dr C's results were obtained with his patients also using traditional PD meds, and he recommended that they continue doing so. Don't expect to be able to replicate his results if you aren't willing to go down that path also.
Nope. Some of the newly diagnosed were able to stay off the meds with thiamine. Dr. C had "three patients who use only thiamine because they have had a complete regression of symptoms." Point #53 on the below FAQ.
Nice tactical ommission of 'only' from that passage:
"At this point either the patient is content to have some slight symptoms or get the complete abolition by adding to the treatment small doses of levodopa. We only have three patients who use only thiamine because they have had a complete regression of symptoms."
The chances that salvation1 is going to have a 'complete regression' of the symptoms they describe by taking only thiamine are effectively zero.
Why do you even bother to troll these posts tirelessly ChirsWF/Horace99 or whatever name you're going to come up with next?
Did you notice that I actually posted the study link? Also, yes, some patients choose to stay off the PD meds with slight symptoms with B1 benefits, while the three had complete regression. You were obviously wrong.
Nothing ventured nothing gained. It is not your place to predict who will have a chance of benefiting or not.
Is this what you call ghosting me? Yet to perfect it, I see.
I wasnt wrong. Dr C DID recommend that his patients use PD meds, and he also speculated that some of the benefit from thiamine was an improved absorption or use of same. Also, of his 3000 patients, we are talking about 3 patients (whose subsequent progress we are unable to track).
If you keep trolling posts with wrong information, I have to respond for others to correct the WRONG info. I don't know about you, but 3/3000 patients is still significant enough for others to try - not all newly diagnosed patients virgin to medications were afforded/aware of Dr. C's treatments as in those three recruited.
Hi ChrisWF, thanks for your reply. It is a fair point you make, but I am hopeful and any improvement would be a bonus on my present position. Rest assured I am going in with my eyes open, but with my fingers firmly crossed.
I think it might be important for you to keep a couple of things in mind regarding HDT. Dr. Costantini was still learning himself right up to his stroke. I think one of the reasons that he chose thiamine HCL over other forms, with the exception of fat soluble forms, was because he was dealing with patients around the world via email and he had to give consideration to availability. In the US, you can pretty much find most if not all forms of thiamine, but thiamine HCI was a more readily available type and that was important for him so he could potentially give more patients availability to his protocol. He wanted to be able to help as many patients as he could.
Dr. Costantini was a neurologist long before he ever discovered the potential benefits that HDT could offer his patients and he felt that the best chance of reducing or controlling tremor and other motor symptoms was through the combination of levodopa/carbidopa and B1. Forum members have found that mucuna pruriens can offer a natural alternative to levodopa, but Dr. Costantini had no experience with mucuna and therefore never commented on its use.
His other consideration back then was that if he knew that each of his patients were taking the same form of thiamine initially, it made it easier for him to work with his email patients because he had gotten very well versed on how people responded to it and how best to adjust their dosing to obtain optimum benefit in the least amount of time. If all of his patients were using multiple different forms that may require different dosing, his job would become exponentially harder and his job was already tough, so for initial testing of B1, thiamine HCI would have been his initial choice and once you had/have established an optimal dose and stabilized your push/pull test, then you could potentially explore your options in terms of alternate forms of thiamine.
Lastly, his most prefered form of thiamine were the injections that the majority of his in office patients received. On the other hand, the addition of oral thiamine allowed him to reach more patients around the world who had no access to the injections or did not tolerate injections well.
Continued good luck and post any questions you have as they will get answered as many on this forum are well versed on the use of HDT in its many variations.
The best of the neurologists start with very low dose and increase subsequently after 6,3 months respectively.
Rasagelin 0.5 mg per day is to start with. If you have more tremors and rigidity, it can be increased to 1 mg a day and tab pramirol SR 0.25 mg two tablets twice a day
I have consulted 4 top class neurologists but none of them has suggested any supplement.
All are suggestive of exercise - running and weights.
I have noticed that the medicines for Parkinson's are same world wide and the doctors only keep changing combinations. The side effects of these medicines are fearsome. I have seen people with psychiatric problem and clotting of blood in the brain.
I am also of the view that medicines should be taken less while the brain should be made to generate dopamine itself instead of waiting for medicines , by running and doing pranayama and meditation.
I take 75% of the prescribed medicines and push the brain to work for balance 25% by doing daily exercise.
I have shared my experience only and not to be related with any one because all human beings are different.
"The best of the neurologists start with very low dose and increase subsequently after 6,3 months respectively."
This depends on the situation and what you're dealing with. For the general population practice, this conservative method seems to make a perfect sense, especially if you're talking about phramaceutical MAO-B inhibitor such as Rasagline. However, in the situation where a patient is experiencing acute B1 deficiency with degraded transporters/enzymes functions, you absolutely need to take a more dramatic measure, often high-dose parenteral thiamine to have any beneficial effect. This was proven solidly over the years especially in dealing with Wernicke’s encephalopathy, severe B1 deficiency with alcoholic abuse, and beriberi where doses below as high as 250mg injections (@140x more powerful than oral) will not restore vitamin status to improve clinical signs, brain damage, nor prevent death. I would not depend on most Drs for nutritional or supplement advise.
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