Yesterday morning I took 2g. No evening dose. This morning I repeated the daily smaller dose. This evening I note improvement.
I went many months doing well on 4g daily. Recently there was some backsliding of symptoms.
Will see in the next days how this plays out.
Roy,
You are one in a growing list of members who are seeing a worsening of symptoms after months or years of HDT usage. Some are interpreting this as a progression of the disease itself and are fearful that HDT may be failing them, but Dr. Costantini felt quite differently on this subject.
Dr. C was well aware of the fact that insufficient thiamine in the brain would cause neuroinflammation which feeds the disease process further. He also knew that eliminating this deficit by using high doses of thiamine could help to reduce the chronic neuroinflammation as well as reduce symptoms.
Dr Costantini also felt that thiamine was repairing some cells at these higher dosing levels and combined with the reduced neuroinflammation as a result of the HDT, he felt it was possible that in time the dose that was previously your optimum dose may no longer be your optimal dose as the cellular repair and reduced neuroinflammation may equate to a reduced need for thiamine! Obviously if he is correct, it would likely take months to years to see this "new worsening of symptoms". His solution to this problem was to lower the current dose very slightly.
Kia17 was one of the first to report such an instance of being stable for more than a year with very good symptom control when he suddenly became aware of a worsening of symptoms out of the blue. Dr Costantini's answer to this problem was to tell Kia to stop HDT for awhile and then restart at the same dose he had been taking, but this time, skip a dose for one day of the week and just pick a day that would be easy to remember. That put Kia back on track with such a small dosage change when you figure that out by seven days, but that is all it took!
It is just a guess on my part, but I have a feeling this problem will begin to surface more as people surpass the 7 month to 18 month of being on HDT. A further guess on my part is that this can possibly happen more than once over a long enough time on HDT. You may ask why and my answer to that is just another guess.
I think that if Dr. C is correct about the whole idea of reduced neuroinflammation and thiamine repairing certain cells, the reduced neuroinflammation which is also likely to lower the total brain oxidative stress level, in combination with thiamine repairing certain cells, creates an environment where the brain is possibly in a better place to effect repairs of its own and in so doing, lowers the body and brains need for thiamine which basically creates a situation where there is now more thiamine available than is needed! One thing we have learned with HDT is that too much B-1 creates a worsening of symptoms and the answer to that problem is that the dose needs to be lowered or at least that is Dr. C's thinking on the subject.
Roy, the fact that you felt a possible improvement quickly after reducing your dose is a direct play from Dr. C's playbook! This reaction tells him that you were very close to your ideal dose, but a bit on the high side and I suspect that other forum members using HDT will soon see similar.
These are all insights that Dr. C shared with our forum for the time that he was able to be with us! Thank you for all of it, Antonio and I continue to pray for the best recovery possible for you!
Art
Thanks so much for clarifying this Art.
My husband has been a bit up and down lately with his symptoms and I now feel this is exactly the reason why, and this has happened approximately 7 months after starting the HDT (he started 29th January).
Thank you Dr Costantini for changing the lives of so many people around the world, and so compassionately. Hope you are progressing better than expected!!
Jenny,
Thank you for updating us and please keep us posted on how it goes from here for your husband!
Art
From what you write Arte, it seems that Dr. C. had predicted that in the long run the dose could undergo decreasing variations. It's a bit like starting from the beginning.
Not quite the same as starting from the beginning for a few reasons. One, you already know your current dose is close to optimal, but possibly a bit high. Two, you already know that B-1 works for you and you need not guess about that point. Three, you should be able to get back on target relatively quickly. Four, this process of readjusting the dose is suggestive of the idea that some cellular repair activity is taking place and that seems like a good thing.
The main downside in this scenario is that it may happen more than once if it is caused by cellular repair, but is that really much of a downside?
Art
So thankful for your knowledge and willingness to share.
Thank you Roy for posting this...the timing couldn’t have been better!
Speculation: perhaps as many celluar mitochondria "healed", other mitochondrial nutrients have become imbalanced?
I agree with Apergerian13 , what matters is the general neurological picture over time, after a year.
We must assess the decline and try to assess how it would be without b1 taking into account that the progression is very individual.
IMO
PD treated with ldopa is a very difficult disease to assess in the short term especially on self-diagnosis when symptoms worsen. A few days of extroversion changes each symptom for the better, this because the emotional system determines the production of dopamine and therefore less stress less symptoms, but this has nothing to do with the chronic condition of the disease which perhaps depends on the individual characteristic and extent of the injury of brain cells.
Oh, it is mainly speculation with no studies to clarify exactly what is happening and even with a study or two, that may not be enough to exactly explain every bit of change that thiamine is causing in PWPs. We may never know that exactly, with or without studies.
It is the same for drugs, we do not always know every effect that a drug is having on the body as a whole. Repurposed drugs could be an example that highlights the fact that even with drugs that have been in use for decades, we may not know all that that drug does in the human body.
Art
Below is a piece of a long and famous interview with Dr C to Ultimaedizione.eu that you can find in Italian on YouTube:
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Dr C: “If you read Professor Reddy [P Hemachandra Reddy ], that is a big researcher of neurodegenerative diseases, he does a study on their similarities where he say that they are all the same, just changing the affected system ...”.
ultimaedizione.eu: “while for the consequences are very similar... "
Dr C:" the consequences are the abolition of that functional system; if we go to see where vitamin B1 influence...i.e. in producing energy and also in roles that are not producing energy...
What is the difference between various diseases?
Let's say...the mechanism affected, I repeat, there are many those where vitamin B1 intervenes to produce energy, and the site.
Just move in different place to have another different illness.
The same ... the same alteration if you move it from its side, into a system like cerebellar, will give a cerebellar disease, if it goes in [incomprehensible word ] it will give the disease of parkinson.”
you can find it al 15:00 minutes, here talk also about ataxia.
================
I use b1 injections and in my opinion the b1 enters brain cells with a role mainly as an energy catalyst, as everyone knows. Maybe in the long run it burns all the reserves and if we don't eat well with other vitamins and minerals this could be a problem for the body.
The advice that dr C gave me was to suspend the b1 a week every three.
A very standard advice that serves to eliminate excesses from the body and restore the reserves of vitamins, minerals etc. This is only my opinion.
note:Transcribing and translating Dr C into English is not easy due of the intense, direct and persuasive communication that goes beyond the words used, directly conceptual, mind to mind.
Giocas, thanks for sharing the video. I didn't understand how often you stop B1. How much do you take a week? Now I am on 50mg. every ten days (second injections). Before I was on 100mg. but I had the feeling that the motor symptons had increased. About this do you have any advice for me? Good things.
ciao Federico,
La mia dose è sempre stata ed è tuttora 2 iniezioni da 100 mg ogni settimana da 4 anni con prescrizione medica.
Ogni tre settimane di iniezioni, faccio una settimana di pausa , poi riprendo per tre settimane e cosi via.
Dopo un po di tempo si impara a riconoscere i sintomi di eccesso o carenza. Si impara ad essere meno rigidi nel protocollo di HDT osservando piu i sintomi, come il nervosismo e agitazione, quindi si salta una iniezione o se ne aggiunge una per quella settimana.
Quindi come vedi ognuno trova la sua dose ottimale con l'esperienza.
Una domanda ma chi è il tuo neurologo in Italia se posso chiedere ?
=============================================================
Hello, Federico,
My dose has always been and still is 2 injections of 100 mg every week for 4 years with a prescription.
Every three weeks of injections, I take a week off, then I resume for three weeks and so on.
After some time you learn to recognize symptoms of excess or deficiency. You learn to be less rigid in the HDT protocol by observing more symptoms, such as nervousness and agitation, then you skip an injection or add one for that week.
So as you see everyone finds their optimal dose with experience.
One question but who is your neurologist in Italy if I can ask ?
Thanks Giocas for the clarifications. If I remember correctly, my neurologist is Prof. Ceravolo from Pisa. In any case, if I feel good enough, I certainly don't owe to him but to the experiences that I have taken from this blog. I have another question for you Gio sorry: do you know what is the equation: injection/pills? Or better: 100mg. in the form of injection every 10 days, to how many mg. are they equivalent when taking pills? Thank you and good night.
Here is Q&A #42 from the thiamine "FAQ Page", which may answer your question.
:::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::
42 . Forum member, Kia17,, recently asked Dr. Costantini how he determines when he will prescribe intramuscular injections of thiamine or oral thiamine in pill or capsule form?
A : When we began to study the effects of thiamine on fatigue associated with inflammatory-autoimmune diseases, in Italy there were available in pharmacies only 300 mg tablets for the oral therapy and 100 mg phials, the latter to be administrated intramuscularly via shots. Already starting from 2011 we realized that the phials therapy is 140 times more powerful than the respective oral dosage. In other words, in order to obtain the same clinical results of a patient taking 100 mg shots once a week, s/he should take orally 14 grams (100 mg x 140) of thiamine in tablets per week, thus over 7 days that means 6 or 7 pills (300 mg each). This was immediately felt as an issue both for the cost of the therapy as well as for the need to swallow a large number of pills each day, lifelong. It should be noted that at that time I was little aware of the potentialities of the internet and the opportunities it can offer to consumers, and in this case to patients. Therefore, back then, if in order to treat the fatigue a reasonable number of pills was necessary, we would stick to the oral therapy, whereas if the patient required 6+ tablets/day, we suggested to switch to an intramuscular therapy.When we passed to the treatment of neurodegenerative diseases we learned that the necessary doses were on average even higher. The dose that we find more commonly used among our patients in Italy is 2 x 100 mg shots per week. The equivalent oral dose would be 13 x 300 mg tablets per day or 8 x 500 mg tablets per day depending upon the availability of the pills and the difficulties to swallow that some patients may or may not have. In most cases our patients prefer the intramuscular therapy. After a few years of the intramuscular treatment however, the glutei begin to be affected by the treatment and it is necessary to switch, if even temporarily, to an oral intake regime. Most of our patients who have been treated with shots for ta few years now with 2 shots per week have no issue to report. The effect of intramuscular or oralthiamine is the same provided that the correct dosage is chosen depending upon the different administration options, but the phials have a much more immediate action the oral therapy is much slower and milder, possibly due to difficulties with the intestinal adsorption. Clearly all patients who are under treatment with anticoagulants must do with the oral therapy, regardless of the number of pills they need. In Italy this is how it works: the patient comes to the ambulatory and is examined. Onthe basis of the examination he receives a prescription to purchase the phials or the equivalent dosage in the form of tablets. A nurse performs the injections. However, sometimes the patient himself is capable or has someone to assist him/her (usually spouse or relative) who is capable of performing an intramuscular injection.On the internet, both phials and tablets (up to 500 mg) are available even without a prescription. It is worth it to point out that in the cases in which the patient cannot take care of the intramuscular injections alone and thus requires the support of a nurse or his regular practitioner, there have been often reluctance from other neurologists or MD to perform the injections as per our therapy. This is why, when I do not have the opportunity to examine the patient directly, and thus have to resort to email exchanges only, I tend to prefer the oral therapy for ease of use. Based on my clinical experience then, one reason that made me prefer the oraltherapy in some patient is also due to the observation (to be confirmed) that patients of Anglo-saxons origins (Northern Europe and the USA) and Africans require much smaller doses to reach the same clinical results of their Italian mates. This makes it easier to go for an oral therapy in these cases. Currently, I have email exchanges withabout 300 PwP and many required that doses were halved as compared to my initial estimate. This may also be due to the lack of proper assessment of the status of the patient that is obviously much less accurate without an in person examination of the patient.
::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::
Art
These 3 studies show that oral thiamine when taken for a week or more can achieve plasma levels identical to those achieved with parenteral administration. There were older studies that perhaps are influencing Dr. C that showed oral dosages were poorly absorbed, but these studies show that not to be true for high doses taken for a week or more. The BMJ for Emergency Medicine "best practices" recommends oral dosage over IM.
-
" Second, oral thiamine hydrochloride when given over a 1-week period produce blood levels that approach those obtained by intramuscular and intravenous administration."
-
Pharmacokinetics of high-dose oral thiamine hydrochloride in healthy subjects: ncbi.nlm.nih.gov/pmc/articl...
-
Oral or intravenous thiamine in the emergency department - emj.bmj.com/content/21/4/501
-
"CLINICAL BOTTOM LINE
Oral thiamine administration is as effective as parenteral administration after five days."
-
Plasma thiamine concentrations after intramuscular and oral multiple dosage regimens in healthy men: ncbi.nlm.nih.gov/pubmed/161...
-
Tissue thiamin levels of hospitalised alcoholics before and after oral or parenteral vitamins: ncbi.nlm.nih.gov/pubmed/335...
-
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Cheers,
Joe in NY
Federico, you ask me something very technical that I can't answer. In your shoes, I'd like a visit from Dr. Fancellu from Genoa to have an authoritative contact person who can help you with this therapy. The PD does not run fast, but our concern sometimes run very fast in our mind leads us to do the wrong thing.
healthunlocked.com/parkinso......
I'll think about it. Do you have a telephone reference?
Fed,
The references you are looking for are in the link of Pa-zzi69 attached to my answer, he as well as others was there.
The same text of the link is reported by Art in his reply,
Thank you Art , you are a good communicator, friend of parkinson's patients. 
I also thank Pa-zzi for the wonderful post on his visit to Italy.😀😀😀
Fed and Gio,
Yes, to be correct, the copy I pasted into the reply with the contact information was from forum member Pa-zzi69 who has already been there.
When it was originally posted, I copied and saved it because I thought someone else would want that information eventually....and so it is!
Art
L. Ron Hubbard made this point in his research for his "Purification Program," that taking too much of a supplement can create deficiencies in others. I have personally experienced this in mega-dosing some supplements to remedy a bad cold, for example, and other situations.
Thank you Roy for sharing, I hope that you are doing another seven years and more with this new dose.
Similar story here Roy! This is great timing. I had recently increased my husband's injection amount when he started freezing and worsening, which hasn't helped.
Last 2 injections I have given him less, remembering that this happened before, in the beginning when his dose was too high.
Thanks for explanation Art. Confidence restored.
Cheers to both of you.
Nellie
I had the same situation. I was on 2g/day for a while and went down to 1g day when I started feeling worse and everything is good for now.
Yes..please let us know...
I'm taking 40% less B1 than in 2017, and it's working well.
My daily regimen is : 1 tablet of Rasagiline(1mg.)+1 tablet of Sinemet(25-100mg)@7:00a.m. This is before breakfast. 500 mg.B1@noontime. This is before lunch.Followed with 1 tablet of Sinemet@2:30pm. At night; I take Magnesium 250mg with 250 mg. B1. This is after dinner. So far, these combinations are helping me live a normal life. I was diagnosed 5 years ago. I tried daily riding of stationary bike for 20 minutes. When weather is nice, I do fast walking in the park with the aid of walking sticks for 2 miles. My left hand tremors exacerbate when I consume high protein food early on a given day. Dr. C is a great help for me as well. Just sharing my battles with PD. BTW, I am 72 years old.
What is a good starting dose of b1? Thanks!
Suntea,
There is not any one dose that is correct for everyone because so far the effective dosing on this forum has shown itself to range from 25/50 mg per day all the way up to 4,000 mg per day.
When Dr. Costantini was monitoring the forum members, he could help adjust the dose for each person, but he is no longer available to do this, so the forum is pretty much on its own in trying to figure out their optimal dose.
Under these circumstances, some members have chosen to start low and slowly work their way upward until they find a dose that seems to suit them. Dr. Costantini felt that that would be a fairly safe approach to search for your optimal dose. Here is a link to a post where members are discussing dosing of B-1 :
healthunlocked.com/parkinso...
Art
Thanks for your post RoyProp and to all those who responded. Have been trying to figure out what is responsible for worsening of my husband's tremor when stressed along with more frequent reflux, food not moving down and increased wakening at night to use the bathroom. At the same time, he has a better arm swing, facial expression when engaged with people in conversation and more. 50 mg. Allithiamin seemed the perfect dose when he started, but it is harder to titrate the dose up and down. He stopped a couple of time for a week and then when back on. Gets better and then worse. He doesn't seem to respond as well to the Vitacost B1 500 mg. He started using CBD Hemp Oil Complex at a relatively low dose of 6 drops 2X/day almost a year ago and not sure if that could be a factor in combo with everything else.
In summary, he just turned 83 years old, still drives to work and back as a CAD Designer 6 hours/day. He loves what he does and doesn't plan to retire unless his employer suggests to him its time. He has been there 20 years. Has had PD 15 years. He is tremor dominant. Almost 3 years ago he started on C/L 10 100 3X/day and has not increased dose. Just a couple of months after medication made a significant difference in Bradycardia, dexterity and gait, he began mannitol and then Allithiamin on and off and continued seeing improvement. We went back to ballroom dancing which utterly astounded members of our extended family who don't see us that often.
Anyone out there have thoughts or suggestions?
Initially I used allithiamine with success
Actually RoyProp I believe it was your posts that led me to look further into Allithiamin and try that for my husband. Thank you for sharing your journey here.
Is he taking standard process CBD Hemp Oil Complex ? Thanks
He was taking just 6 drops 2X/day of Blue Bird Hemp Complete 6X (1,500mg cannabinoids/1oz) He stopped last night.:
With 1,500mg+ per fluid ounce, this concentrated hemp extract oil blend is a special formulation of various hemp extracts. As opposed to our more basic Classic Hemp 6x, Hemp Complete 6x contains both the decarboxylated (i.e. CBD) and non-decarboxylated (i.e. CBDA) forms of cannabinoids, in a 1:1 ratio. In addition, we’ve also included a steam-distilled (water) hemp extract which contains a significant amount of additional therapeutic constituents known as terpenes. Our steam-distilled hemp extract contains at least 26 different aromatic terpenes plus various aldehydes and ketones. With both forms of cannabinoids + the steam distilled hemp extract (additional terpenes, aldehydes, ketones), this blend is the most comprehensive hemp product we know of.
INGREDIENTS:
1. Concentrated full-spectrum hemp extract (1,500+mg cannabinoids/fluid ounce)
2. Steam-distilled hemp extract (hemp terpenes, flavonoids, aldehydes, ketones)
3. Organic extra virgin olive oil
STANDARD USE & TYPICAL SERVING SIZE:
Keep at room temperature. Gently swirl the bottle before using. Most people swallow 15 drops (25+ mg cannabinoids) or more, as desired. The amount that people take on a daily basis can vary greatly. Our hemp extract products can be ingested morning or night, on an empty or full stomach.
Like many natural supplements derived from plants, the taste may be strong and bitter. Some people like the flavor, some don’t. Mix with a smoothie, applesauce, etc. to smooth it out, or try our hemp extract capsules.
Conversions- Ounce, Milliliter, Drop, & Milligram
1 fluid ounce = 30 milliliter (ml) = 900 drops = 1,500+ mg cannabinoids
1 ml = 30 drops
15 drops= 25+ mg cannabinoids
We encourage doing your own research & experimentation with concentrated hemp extracts in order to find what feels best for you.†
You did ask for advice.
But first a disclaimer. I do not have a PHD. I am not an MD nor am I an ND. Hell! I don’t even have PD.
But in keeping with the theory that mitochondrial insufficiency underlies neurodegenerative disease may I suggest the following supplements -
Vitamin B1 - Keep this going. It is critical.
Vitamin B2 - ATP cofactor (FADH2)
Vitamin B3 - ATP cofactor (NADH)
Vitamin B5 - Coenzyme A
Biotin
Alpha Lipoic Acid
Magnesium
I would add CoQ 10 as a nice to have
These are all inputs for the little factories to run: the mitochondria.
The next question is dosage.
(1) I would start with a good B Vitamin Complex from a reputable supplement supplier. This covers the basic Vitamin B needs. And I would add to this ..
(2) For B2/B3 in one package. I find it convenient and effective - ‘ATP Cofactors’ (100mg B2 and 500mg B3 as no flush Niacin)
(3) R-Lipoic Acid 240mg (Life Extension)
(4) Magnesium Citrate for Bowel Movements and Life Extension Neuro-Mag (Magnesium L Threonate) for a shot to the brain cells.
(5) Life Extension - Super Ubiquinol CoQ10
In all instances follow dosage on package and triage up as necessary.
And if you really want to go all the way have a look at sunvox regime. ✨🏋️♀️✨
healthunlocked.com/ataxia-u....
Thanks for your detailed reply, CaseyInsights. I too am a spouse of someone living with PD doing the research and figuring out what might be most helpful. I do have professional knowledge of supplements and the fascinating way systems work together to keep us healthy. I am a Certified Nutrition Specialist with a Masters in Human Nutrition and 3 years training in Herbal Therapeutics but always looking to learn more. My husband takes just about all of the supplements your wife does though I use some other high-quality brands and slightly different doses in addition to quite a few more to address some of his other health issues.
In response to some of the discussion on this thread, I am thinking of cutting back one by one on some of the most recent supplements I was using to address his increasing tremor given that perhaps the B1 had indeed lead to reduced brain inflammation and he is taking more than he needs of some things, thus contributing to the Reverse Effect where too much of a nutrient that is helpful can cause the same symptoms it resolves if too high a dose is given.
It is very fascinating to go down this road and often frustrating because so many things change but WOW when you find that sweet spot what a VICTORY!!!
All the best to you and your wife.
Ok then. Lack of supplementation is not the problem.
The shakes then may be a highly individualistic response to an environmental stressor.
I seen it reported on this forum that a high protein diet cases an uptick of shakes. I am seeing GioCas reporting on this thread that Reflux could be a cause: she links this to poor Ldopa uptake due to stomach acidity. Some are reporting excess B1 intake to be the cause. In the case of my wife the stressor is sugar. A slice of cake at the wrong time will bring on the shakes.
And unlike most of us, you are well qualified to zero in on that stressor. How has his diet shifted? How has his supplementation changed? And is there a need for adjustment. What of the work environment? Is there additional stress there? And what of the ‘patient’ himself, what are his current ‘troubles’.
There are so many variables that quite frankly only you can determine what’s wrong and plot a course of action.
Wishing you good judgement in the days ahead 👍🏾🌺👍🏾
I agree with most of what you suggested, with one caveat, particularly for PWPs. Most B-Complex I've used has 100 mg of B6, Pyridoxine. As suggest by MANY articles, for quite awhile, I had taken lots of B6 to try to improve my inability to get decent sleep, and I had started taking B6 years prior for hemorrhoids.
Some months ago, my neurologist suggested I be tested for B6, and I thought, "Why? Aren't the B vitamins water-soluble, and aren't excesses just eliminated in the urine?"
I got blood-tested for B6 and many others, and found I had over 400% of optimum B6 in my body!
Not only that, I researched it and, lo and behold! Too much B6 can cause permanent nerve damage! (Deficient B6 can cause other problems.)
I cut B6 out completely and after a few days noticed major improvement in my walking and jogging. I was having to look where to place each foot so as not to stumble or trip, but that totally cleared up after cutting out the B6.
Thanks for the heads up.
My B Complex is a combo of Pyridoxine and P5P set at 50 mg.
I favor nutritional testing. Not too sure we do it here, but labs may have a link to foreign. Will follow up!
✨🙏🏾✨
P5P is a good form, and 50 mg. is certainly on the right side of 100 mg! Thank you for your reply, and I look forward to your follow-up.
Trust you are familiar with this post on B6 toxicity
healthunlocked.com/parkinso...
I'm very new to this site, so no, I hadn't read that GREAT article. Thank you so much for referring me to it! I found out about Pyridoxine (B6) toxicity the hard way!
Hi answerseeker,
Reflux is the main cause of most tremor in my case. Reflux is sneaky because it is a constant annoyance and in addition to physical burning it causes stress, induces negative emotions like an unjustified fear triggering a downward spiral. It causes sleep disorders that are so important for us patients. I also believe that excessive acidity hinders the assimilation of ldopa. Too much alcohol and coffee and large meals in the evening aggravate the reflux. Without reflux my tremor improves a lot.
Gio
Gio,
Have you ever tried betaine hcl w/pepsin for the reflux?
Art
Agree. When he is getting reflux nearly every day everything else is worse. Some weeks are pretty good with only a couple of quickly resolved incidents remedied by Jin Shin Diaphram flow and focusing on his breath for a minute or two. This past week was pretty bad. Does often correlate with the amount of extra pressure he is feeling to perform with time limited.
I think you meant to reply to Gio and not me so you may want to re-address your comment to Gio.
If you are not sure if his reflux is caused by too much or too little hydrochloric acid, for myself, I use this supplement to very good effect to smooth out digestion to very, very comfortable no matter what I eat!
amazon.com/NOW-Foods-Super-...
Art
You have been there?
Arte, you are the precision made person. I will also propose you as a tour guide. I am italian and Genova is not very far from where I live. Thank you very much.
Hi Roy thanks for the update I seem to have settled on 2000 myself daily. When you say backsliding symptoms what exactly were you experiencing? Thanks Steven
Control of brushing my teeth was slightly impaired.
Roy,
While you are waiting to get your B-1 dose fine tuned, sometimes bringing your elbow down so it is touching or almost touching your side, can sometimes make brushing teeth a little easier.
Art
I guess you're going to have to edit your standard post now...
Today I returned to 4g daily.
Roy,
It has been about two weeks since you went back to 4 grams/day, can you update on how that is working for you and have you made any other changes?
Art
I changed my dose back to 4g as I was feeling rough at lower dose. I suspect the earlier lower change was the result of subtle symptom change. Now I am still suspicious of the change in symptom. At higher dose (or lower dose) no substantial improvement.
This past two weeks I have experimented with mag to affect tremor.
Moving from combo mag to single L-theronate mag after reading:
copy from Facebook Group post at Parkinson's thiamine hcl:
Marion Capewell shared her first post.
I am interested to know how long it took for B1 to work for people? I am increasing my dosage slowly using 500 mg tablets and I am a week in. First day of 3 x 500 mg.
Wendy Tutto Goltz Does the B1 help with tremors?
Kay Sucy Mason Roy Propsner It didn't for my HWP. But once his Dr. said to add the Mag-Theronate with each B1, wow! What a difference. He was up to 2000 mg of B1, and shaking like a leaf in the wind. Cut it out totally, for about 1 month, went back to 1 500 B1 HCL mg and 2000mg of Mag/threonate, and some days we wonder if he really has PD! (Yes, dr. assures us.) Not suggesting this is the answer for everyone. Just our experience.
Thank you for the update , Roy! Dr. C did add magnesium (Aximagnesio a magnesium multi) if he thought the response to B-1 was insufficient for the patient. He said he would also add small amounts of individual B-vitamins for the same purpose, unfortunately I have no information on which B- vitamins and at what dose.
Art
Hi Roy, I was just wondering if you have written a summary of your B1 intake dosage from inception to the present.
B1 question
B1 and Carbilev 
B1 covid
B1 dosage advice
Whole Lotta B1
