"Tell me what symptoms have improved"

The last two weeks I took 6g a day seeking tremor improvement with thiamin HCI. Nothing profound but I imagine a slight improvement. I am frequently asked "what improvement overall?" The answer came yesterday when my dentist commented that my walking shows great improvement over the last time she saw me 6 months earlier. I then realized how much I have forgotten. That is the reason Doc Costantini asks that we first thing video tape ourselves walking before we start treatment, as a reminder and have visual documentation

[bassofspades]

Improvement is so gradual you dont notice it right away.

[ion_ion]

I tried for one day to jump from 2g/day to 3g/day and I noticed my tremor intensified. But not sure if that was the cause. So I went back to 2g for now which gives enough mental/physical energy and stability.

[Juliegrace in reply to ion_ion]

Higher doses can cause agitation.

[ion_ion in reply to Juliegrace]

You are right! That's the word: agitation. And that's why the tremor intensified.

[Don_oregon_duck in reply to ion_ion]

I probably started on the Thiamine HCL the wrong way but it seemed to work for me. Now my question is "how much better might my results have been if I had done it the correct way? But wait, what Is the correct way to manage PD and/or Thiamine/HCL?

After reading some of the postings from Park Bear, Roy-Prop and others replies to him, I started on a Saturday night taking one half of the daily max limit, which is 4 g/ day. Then 8 days later my energy came back the highest it has been since I have been DXd 3.5 years ago. I am on Rytary but was having so many unpredictable off periods, I was afraid to make any appointment a week out because I rarely wanted to leave home any day. After 3 weeks, I began to get nervous shakes, once again, I read on this site, that we should pay attention to how much we are taking of the Vitamin B complex, since we could see symptoms of being "B" undernourished. I increased the B Complex, and almost immediately, my undernourished symptoms stopped. It has been two months and the positive results are still continuing.

I might have done it all wrong because 1) I did not consult with my doctor, before I started this regimen. 2) I started out taking the target amount (4g daily) instead of working up to it. 3) I did not start out with the knowledge about the need to increase the other B complex. 4) I did not keep track of my experience via a journal. The truth is, that I did not expect to see any results. 5) Today I learn that I have to be more carful about the timing on when I take the B's.

I share my experience for those who are held back in trying a regimen because they want to make sure the do it as close to perfect as possible. I am not recommending you should try something that could possible be very harmful to your health.

The other fact, I will share with you, is that I am a "problem solver" NOT a "rules follower." Sometime I might post my findings that brought me to make the statement, "I believe there are only two types of people in the world " Rulers Followers" and "Problem Solvers." In which group are you?

[ruff1 in reply to Don_oregon_duck]

Hi can you explain what you mean about being more careful about timing b’s? What b complex do you take with the thiamine HCL ? 😀

[Don_oregon_duck in reply to ruff1]

Can someone answer ruff1's question about the timing of taking the B-1 and the

b complex?? I read it but now can not find it.

Thank You

[Don_oregon_duck in reply to ruff1]

Ruff1,

I finally found out what you and I, and everyone else should know. The B-1 should be taken on an empty stomach. The B Complex brand is from Shaklee..

Thanks for waiting.

[Hidden in reply to Don_oregon_duck]

Reported by meandpd "His "prescription" seems to be typical for most of us: Take Thiamine Solgar 500mg tablets, 3 in the morning and 3 at noon, before or after the meal every day. Along with keep taking my sinemet 25/100 3x per day. I asked him about drinking red wine (easy to do in Italy) and he didn't seem to think this was an issue, in moderation! "

[park_bear in reply to Don_oregon_duck]

When all else fails, consult the instructions ; - )

I started with 4 g a day right off the bat and have not had any trouble.

I am also taking a B complex and a multivitamin. So perhaps this kept me from having side effects.

[Hidden]

RoyProp,

I found this quote in one of my emails from Dr. Costantini and thought it was worth mentioning to you in case you have not talked to him yet about your PD and tremors?

Art

.......... ' tremor is the most resistant symptom of treatment and the one that attracts the patient's attention. That should be attacked in the future by increasing levodopa doses '.

[Hidden in reply to Hidden]

I think by the term, "in the future", Dr. Costantini is referring to once you are stabilized on a fixed dose of thiamine. At that point is when he will attempt to alter the levodopa dose to try and minimalize or eliminate remaining tremors.

Art

[TSonmez]

Unfortunately my mom has already given up taking it. She was on I think 2 grams or maybe 3 grams for about 2 months. My dad wasn't really that behind it and didn't encourage her much to keep taking them. She also said they made her more hyper (she suffers from really bad dyskinesia) and also very rapid off times. Here CL only last her about 2 hours before she needs her next dose. I also supply her with cannabis hoping it will help with dyskinesia and sleep but again my dad isn't very supportive (he is her caretaker most of the time) and she is afraid of feeling "high". She also doesn't eat a great diet. Again, my dad is the caregiver and he tends to purchase processed foods and wants to always feed her meat. I tried to explain that a vegetarian diet or a diet in high in veggies and fruits would be best but he thinks that is too difficult. Sorry I think I am venting here. It is just very frustrating when I feel like I am the only one trying to find ways to reverse the effects of PD or at least improve her quality of life. Everyone else seems to be just accepting it and waiting it out until the end.

[Hidden in reply to TSonmez]

I also want to vent especially when I read how 'mom' is giving in to PD. Halting or even slowing progression is a huge win for anyone with PD. I don't believe B1 causes anything remotely similar to dyskinesia...or agitation for that matter. Something else is the cause. My neurologist told me, when I expressed my fear of dysk from C/L, he said to lower the dose of C/L. Maybe in mom's position/dose, smaller but more frequent.

When first I was dx I was stoic. Later as I read and learned more about PD, I cried. I want to fight this Parkinson's and that is what drives me.

I have not tried a vegetarian diet to fight P. I do not find where any patient has experienced good results. I tried a keto diet for a while. I tried coconut oil. I tried mucuna. I believe CBD is worthless. I found thiamin HCL and discovered inspiring testimonies both in Doc Costantini's data as well as from people in Healthunlocked Parkinson's Movement.

Starting B1 using benfothiamine plus allithiamine (250mg/50mg) 2x day. I began to see good results, great results. I have since learned from the Italian doctor that the allithiamine was the reason for the early improvement. On further study and the doctor's recommendation, I changed to thiamin HCL in Vitacost brand as it is in capsule form. Capsule form is easier to swallow (mom?) and will surely dissolve in the stomach where a tablet may be slow, to slow.

Try to convince your mom to give thiamin HCL the four months called for. Let the decision be hers by encouraging her to look at what her options are, what is appealing to her, what she will put up with, against the progression of Parkin's. There I have vented and hope with all my heart blessings on your mom.

[TSonmez in reply to Hidden]

thank you. I will order the vitacost brand capsules and ask her to try again for fourth months.

[ruff1 in reply to TSonmez]

Or thiamine HCL powder, dissolves easily in juice - I use black currant , I have small accurate scales that weigh.5g , cheaper than capsules and no extra capsules to swallow.

[TSonmez in reply to Hidden]

Real quick....the vitacost brand B1 is 500mg per capsule. How many should she take a day?

[Hidden in reply to TSonmez]

4 capsules, morning and afternoon

[ruff1 in reply to TSonmez]

4 first thing in the morning on an empty stomach, and 4 lunch time , although my husband takes his second dose about 4 pm before he eats found it works better .

[999---666 in reply to Hidden]

roy, several questions, if i wanted to try this reg, where do i start? i am going to try mp shortly, you say you tried it and this b treatment is more successful?

are you getting any levodopa from anywhere in addition to b treatment. and did you know low dose lithium, also arrests evolution of neuro degeneration. have you tried it. i don't have tremors. i have speech impediment, my right knee locks at times and balance problems.

i did't think levodopa was helping but i notice things, the latest, my writing improves, first couple of words anyway. my right side is stronger.

[Hidden in reply to 999---666]

Today I updated my profile.

[999---666 in reply to Hidden]

sorry, where's your profile. dumb question i know, but i searched and searched. how's your spine stretch gizmoe, you still use it. i don't use dr ho's electric stimulation of feet/legs, levodopa tazers me regularly.

[Hidden in reply to 999---666]

Click on my picture. Spine stretch gizmo gave me an inguinal hernia

[KERRINGTON]

Hi Roy, I too am following Dr C'S protocol (on my own). I've passed the 8 week mark, and continued, but reduced the amt I take from 8 to 6 grams. I have tremor yet, and I still have fatigue, but I'm also borderline hypothyroid for which no MD over the yrs wd prscribe anything. On the positive side I seem to be having less down time, less stiffness, less tremor, and had to cut back on MP due to lessened symptoms. The MP (NOT EXTRACT) was starting to make me way to relaxed.

[ion_ion in reply to KERRINGTON]

Are you talking about 8g/day of Thiamine HCL? I jumped from 2g/day to 3g/day and I felt some agitation. I'm even considering to go down to 1g/day.

[Hidden in reply to KERRINGTON]

That's not really Dr. Costantini's protocol at 8 grams/day. From what he has told me, that dose could potentially worsen symptoms in some PWPs!

Art

[Hidden in reply to Hidden]

After seeing the progress made by treating his patients suffering from chronic ulcers, multiple sclerosis and similar afflictions, Dr. Costantini decided to expand his research into sufferers of neurodegenerative diseases like Parkinson’s. Dr. Costantini found that the ideal dosage was based on body weight: 60 kg corresponded to 600 mg of vitamin B1 taken orally eliminated the exhaustion and neurological deficit. easyhealthoptions.com/itali...

[KERRINGTON]

ART AND ROY..I'm sorry, I goofed... I took 4 grams a day ( 8 tablets each with 500 mg Thiamine HCL. I dropped to 6, or 3 grams this last week because it just seemed to permeate my body, urine etc

[Hidden in reply to KERRINGTON]

Now you're talkin'!!!

Art

[Gioc in reply to Hidden]

emh ....but it was understood!

[Hidden in reply to Gioc]

Dr. Costantini found that the ideal dosage was based on body weight: 60 kg corresponded to 600 mg of vitamin B1 taken orally eliminated the exhaustion and neurological deficit.

[Gioc in reply to Hidden]

When looking at the researchs of doc Costantini, in my opinion, we must take into account their chronology, that is, it could have a before and after. I perfectly remember what my first question was with the doctor in 2015, and it was about whether the pills could replace the injections, but at that time his answer was lapidary: the injections give a certainty of assimilation. And that's that. But today the experience on Thiamina Hcl pills and Parkinson's seems better and I'm also thinking about going from 100mg thiamine hcl injections to pills, because I got tired of bites, but I'll do it in six months a year (I have to finish the stocks). So I think that the research of the doctor on the use of the pills is to be read also in chronological order. I am an expert in the use of injections, but I am not practical about the pills. I suppose that the intestinal absorption is somewhat personalized for the starting dose should be regulated empirically, in practice. Then at the end you become an expert. BUT YOU NEVER CONFUSED THE EFFECTS OF THE B1 WITH THOSE DATA FROM OTHER MEDICINES. Every medicine including b1 has its precise side effects, which are well known and written on the buggy. B1 never gave me problems and my opinion is that if you think that 2g of thiamin HCL in oral pills is a high dose, well, never try to do two or three intramuscular injections of 100mg thiamine HCL a week like I did, because the doctor told me, not you. But you can always write to him in person.All you.

ultimaedizione.eu/2015/04/2...

[Brynjulf in reply to Hidden]

I have difficulties to understand this ideal dose of 600 mg, as I understand that he earlier have recommend 4 g a day to you and that the dosee been raised to even 6 g. That means 10 times the socalled ideal dose. (I don't think you might have a body weight of 600 kg). Please claryfy.

[Hidden in reply to Brynjulf]

Biology! We, our chemistry, reacts in its own personalised fashion to disease, drugs, diet, and a myriad of environmental affects. The doctor has set a standard of 4g a day. And the first thing one notices, a lunch x dose replacing an evening dose. Second we observe lower and higher doses in experience of, well, people herein. Third we read some people herein report interaction or side effects, and that from a supposedly simple and safe B1 vitamin. I experimented with 6g a day for two weeks. Two days ago I changed to 2g a day. About one year ago I experienced good results using 100mg/ day of allithiamine.

[Brynjulf in reply to Hidden]

Thanks, I understand by this that the most recent recommended standard by dr Costantini is 4 g and not 0,6 g each day.

[Hidden in reply to Brynjulf]

Four days and I am noticing very small changes since I lowered my thiamin HCL to two grams a day. I will continue this level and see what develops.

[Hidden in reply to Gioc]

by some, but not all!

Art

[carpark]

I wrote to Dr Costantini and told him that I was taking 500 mg and thought it was making me more jittery than I already was. I am underweight and female also. He responded that I should take 250 mg, which is much less than everyone here is taking. I am now taking 200 mg in AM and another 200 mg at noon. I feel more energy so far and will try to up the dose in awhile. I think it best to start with a small amount and gradually take more if you feel okay. Better than giving up completely!

[Gioc in reply to carpark]

you Willow are very wise, thank you

[Hidden in reply to carpark]

Yes, halving the dose is his typical response if someone is concerned

[andrehypnotic]

Wow 😳

[olgavieira]

Thank you for all your informations. I´m trying to help my father whose principal symptome is tremor. His neuro is against all natural treatments. He only takes 3 sinmets a day.

[ion_ion in reply to olgavieira]

Is the sinamet helping to stop the tremor?