12th Day Thiamine

After steady improvement and calm, on 3 grams for 11 days. Today I hit a bit of a wall. Everything has gone slow. Still calm. Is it a dose problem?

[Kia17]

Can you elaborate please? So people here can compare your past and after taking Thiamine.

[Hidden]

Diagnosed 8/16, confirmed 2/17, Right side bradykinesia,Tremor and shoulder pain. Cyclical symptoms. No medication. Prescribed by Dr C 4 grams 12 days ago. Jitters so dropped to 3

[Greenday in reply to Hidden]

Did Dr Costantini ask you to drop to 3g? I see many are advised to cut in half when experiencing side effects.

[Hidden in reply to Greenday]

No it was only day 4 so I took it on myself given how I felt on 4 grams

[Kellypeters in reply to Hidden]

Why not email the Dr again for advice? With all his experience it will make the process of working out your correct dose quicker and easier.

[Cons10s]

Yes, I've experienced the jitters with B1, and this is how I successfully got past them.

Twice over the past 9 or 10 weeks of being on the therapy, I've gotten overly jittery. The first time was during the first four weeks, where I stopped taking B1 for one full day. This eliminated the jitters, and increased the positive effects. The second time I became jittery last week, I stopped the B1 therapy for two full days, again experiencing increased positive effects.

I'm on a low dose at 2000 mg per day. This because I think I have high absorption. I also use Mucuna at a low dose with good results, again because I think I have high absorption. I don't use any pharmaceuticals.

First noticeable PD symptoms started 3 1/2 years ago.

All and all I'm having fantastic results with the therapy. I could create a huge list of improvements from obvious to subtle. It's really normalized my life.

[Hidden in reply to Cons10s]

Cons10s,

Can you "edit" your existing post at this link to reflect your current update? Thank you!

healthunlocked.com/parkinso...

Art

[KERRINGTON in reply to Cons10s]

Hi, How much MP are you on, and is it the extract, or complete mucuna bean that you are on ? I'm trying to compare what I (10 plus yrs PD ) am taking to you, a relatively new PD'er

[Cons10s in reply to KERRINGTON]

I'm taking three capsules of 40%, by Barlowe's. One capsule three times a day. After a year of different types powders and tincture, I find the capsules to be consistently effective.

If I'm making a smoothie i'll then use some powder, or I will add some tincture to water, when at work. Both by Banyan Botanicals.

Am I understanding you correctly to say that you have used Mucuna for 10 years. Are you also using pharmaceuticals.

[KERRINGTON in reply to Cons10s]

Thanks. No, I've had mild PD for 10 plus years, but it got worse a year, or 2 ago. I've been on, and experimenting with MP & Thiamine HCL since 2/2018. Currently I'm on 4 gms thiamine, and 1 tablet Banyan 3% to7% MP, twice a day. I'm thinking of upping to 3 tablets daily as the tablet has so little dopa in it.

[Cons10s in reply to KERRINGTON]

Kerrington, Can you tell me your age, weight. height. I’m 5’11, 145lbs. Age 56.

You’re using double the Thiamine dose I use, but I may work up to that in time. The 40% Barlowe’s Mucuna capsule is effective for me. I do also have the 4-7% Banyan but feel it’s not strong enough however being the full plant may provide additional benefits as they state. I sometimes add that to a smoothie but don’t use that brand daily.

Can you further describe mild PD for a decade and what that looks like.

Constance

[KERRINGTON in reply to Cons10s]

'Older than dirt', the number can not pass through my lips...but I can tell you this; my birthdate is 1945....you do the math

My PD began with right/finger/hand spasms, which I chalked up to too much computer work. Then I had leg/toe spasms, next, my thumb wd move on it's own ( I thought this was weird) . I started to get intermittent whole hand shaking, then to keep the hand still I put postural pressure on my shoulder to keep the hand quiet. I then looked like something was wrong with the shoulder, but I knew I was holding it to help the hand. Next my right foot started turning out, then anxiousness, extreme tiredness, aches...lost right hand dexterity, fine motor, minor balance issues. I then joined this site. I have temporarily stopped taking other natural supplements that helped keep things at bay, until I get my MP & B1 Levels right.

I'm 5'2 140 lb.

[Vegegardner in reply to KERRINGTON]

And how have you gone with the B1. My dad has pd. About to try B1.

[Despe in reply to Cons10s]

Sorry for the repeat. Didn't see your answer to my question.

[JANVAN in reply to Cons10s]

Hi Cons10s ! Are you still working ??

[Cons10s in reply to JANVAN]

Yes running my company of 25 people. All is pretty easy now.

[Despe in reply to Cons10s]

So happy for you! My husband was diagnosed March of this year although symptoms started at least 8 years ago. Mayo neurologist said no meds yet, but I decided to have him start Mucuna last Friday. His symptoms have improved and it's only the 4th day. Next week, he will start B1 injections, after consulting, via email, Dr. Costantini. Hope the results will be what I have been hoping for.

Which Mucuna brand are you using and what dosage? My husband is using "Keter Welness" Mucuna L-Dopa 20%, Bioactive Mucuna Extract 700mg, 1 capsule a day. I followed the Spanish Neurologist's (forget his name) instructions and started him on a low dosage. He also takes vitamins and minerals.

[bibsie in reply to Despe]

Hi Despe,

Can I ask what happened when your husband started the injections? My husband was diagnosed 1.5 years ago but we've known he had PD for at least 5 years. Tremor, gait problems, illegible handwriting, slower mental processing (this part may be stress and worry). He's taking oral thiamine (4,000mg/day) but he's had no response. We just found a doctor who will do injections. I will write Dr. Constantini again to ask what dose he suggests but I'm curious about your experience. How many injections has your husband had? What response?

My husband is just starting with mucuna (3 days ago) but hasn't had any response. He has waited 40 minutes before eating. Is that too soon?

Thanks for any info/suggestions.

[Despe in reply to bibsie]

Finding the right dose for both B1 and MP is the hardest part of naturopathic path to treat PD. He started B1 6 months ago with a few breaks always after consulting Dr. C. Dr. C. had my husband on 300mg (100mg X 3 week), after he initially had him on 200mg (100mg x 2 week). From 300mg a week down to 250, then 200, and finally his current dose 150mg a week. My husband felt that the dose was still high and he decided without consulting Dr. C. to lower it even more, 100mg (50mg x 2 a week). He feels better now and will email Dr. C. again next week with a new video, pull test, walking and talking. There are certainly improvements, such as smelling food when it's cooking, intermittent arm swing, legible handwriting and overall improvements that could be more distinctive and permanent.

As far as MP is concerned, he is now on 40% L-dopa X 2 day. He started this protocol yesterday, and he is doing fine, so far. He treats MP like Sinemet: takes it an hour before food or 2 hours after food. It seems to work fine. I will post again about his B1 progress after we email Dr. C. next week.

[Vegegardner in reply to Despe]

Please let me know about B1. It's been 3 years since your post. My dad has pd. Starting B1. Did you try IM injection ? Thanks for sharing

[Despe in reply to Vegegardner]

Hi! Sorry for my delayed response. Yes, my husband started B1 IM (injections) May of 2018 under the guidance of Dr. Costantini. First injection he felt "back to normal" as he described his experience. He continued B1 injections for about a year. He was doing well and since Dr. C. passed away and didn't have his guidance any longer, we decided to try oral B1. He experimented different doses. His current one is 150mg/day (100 mg morning and 50mg afternoon). He believes that is the right dose for him now. Trial and error is the best way to find out what is the right dose for your dad. Based on my husband's experience, B1 IM X 2/week (200mg) is a good start. Art and Gio have a lot more experience with B1 and dosing.

If you go to "Search HealthUnlocked," right upper corner, and enter Dr. Costantini's name, you will find a lot of B1 information.

Hope I have helped and wish your dad the best!

[Vegegardner in reply to Despe]

Thankyou so much for reply. I read that a 100 mg IM shot is equivalent to 2000 mg orally a day. ? Your husband has settled on a low dose. But if that's what works. Fantastic.

[Despe in reply to Vegegardner]

You are welcome. It takes a lot of time and patience, so keep trying.

[lou1017 in reply to Cons10s]

Hello

(I'm on a low dose at 2000 mg per day.) is it 2000 or 200?

reply appreciated.

[Hidden in reply to lou1017]

2 grams = 2000 milligrams

[fossygma in reply to Cons10s]

Im so happy for you, near tears.

[Hidden]

retry,

Stop spinning your wheels and dose guessing and let Dr. Costantini know how you are reacting to thiamine therapy. It will be very helpful in explaining it to him if you can be as specific as possible in your description. To say that, ' today I hit a bit of a wall ' , is not specific enough to understand what you are feeling that makes you think there may be a problem with dosing. What you stated could mean that you were noticing daily improvement and then today you did not notice any additional improvement over yesterday. That may not mean that you need a dose adjustment, but if you mean that you feel like symptom improvements are now going backwards, then you may need a dose adjustment.

Dr. Costantini is clear on this. If you have a problem with thiamine, you contact him and he will go over what you are taking, go over your results or lack of results and make a dosage adjustment if needed.

Art

[Hidden in reply to Hidden]

Same thing happened again today. So emailed Dr C; In a rapid reply, he has dropped the prescription to 2 grams per day because he saw the signs of excess Thiamine for my severity. Thanks for your advice

[Hidden in reply to Hidden]

retry,

I'm glad you were able to get such a fast reply from Dr. Costantini! He is doing his best to stay on top of the emails. He generally wants to know about significant changes like you are having as soon as possible to get you back on track. Good luck and keep us posted!

Art

[fossygma in reply to Hidden]

May i get his email please.

[Hidden in reply to fossygma]

It is in the title of this post :

healthunlocked.com/parkinso...

There is information in that post that you should have before contacting him.

Art