High dose B1 therapy using Duopa pump - Cure Parkinson's

Cure Parkinson's

26,569 members27,876 posts

High dose B1 therapy using Duopa pump

Santana35 profile image
11 Replies

Does anyone have experience using a Duopa pump to administer Vitamin B1 directly into their small intestine? I have purchased Vitamin B1 HCL in liquid form which is used when a shot is given.

From a dosing perspective, I don’t know how a shot of Vitamin B1 translates to a comparable amount taken through the Duopa pump.

Any thoughts on this are appreciated.

Written by
Santana35 profile image
Santana35
To view profiles and participate in discussions please or .
Read more about...
11 Replies
Juliegrace profile image
Juliegrace

Have you checked with your doctor about using the pump for anything other than the Duopa? It does not seem like a good idea to me.

Santana35 profile image
Santana35 in reply toJuliegrace

I don’t literally use the pump. I use the tubing and Peg-J connector. The liquid Vitamin B1 HCL is packaged in single dose vials. I simply add the contents of the vial into the syringe I use to flush out my tubing, add some water and I am good to go

What makes this solution compelling is where the Duopa tubing is placed in my small intestine. Duopa gel is deposited in the jejunum area for maximum absorption which is also where Vitamin B1 is absorbed.

I am currently working with my neurologist to understand how High Dose Vitamin B1 therapy could help me. Leveraging the Duopa plumbing is a no-brainer!

Juliegrace profile image
Juliegrace in reply toSantana35

A concern would be that the “single dose” is meant to be delivered as an IM injection which is very different from delivery directly into the small intestine.

Santana35 profile image
Santana35 in reply toJuliegrace

i agree! Understanding how to arrive at the appropriate dose is what prompted my post. If you have any constructive ideas, I am all ears! I am

HekateMoon profile image
HekateMoon in reply toSantana35

Please, keep us posted!

brettnmi profile image
brettnmi

what’s the dosage of B1 in pills?

Santana35 profile image
Santana35

I am currently taking 1000mg per day. In 2 weeks I will go up to 1500mg.

enjoy2013 profile image
enjoy2013

(From wikipedia) B1 can be given iv to people with Beriberi or thiamine deficiency caused by denutrition, malnutrition or genetically. Given thiamine intravenously (and later orally), rapid and dramatic recovery occurs, generally within 24 hours.[m

Improvements of peripheral neuropathy may require several months of thiamine treatment.

I w8ould ask the pharmacist, or both companies about possible interactions.

You may also ask the team of Prof Costantini. Look for a contact us on highdosethiamine.org. Good luck and Happy New year

PDKiwi profile image
PDKiwi

I'm not qualified to comment however various commentators claim that a lower dose of Benfotiamine, which is lipid soluble B1, is effective. Personally however, after taking various doses for >12 months now, i've noticed no difference that I can tell. I would be interested to know others experience.

Sue171 profile image
Sue171

I use the pump , and I absolutely DO NOT recommend that you do this without the approval of the surgeon who put the tubing in for you. The vitamin solution may wear down the plastic tubing, which may require surgery to remove / replace. Also, Your insurance may not cover you if anything goes wrong that’s even remotely related to this, as it would be considered an unapproved/experimental procedure. I sense that you’re hell bent on doing this regardless of what we suggest here, but I truly hope that you reconsider !!

enjoy2013 profile image
enjoy2013

I agree with Sue171, when I wrote about consulting with the pharmacist and the companies, I was thinking among others to the possible materials alterations.

Not what you're looking for?

You may also like...

Duopa pump

Has anyone here had a Duopa Pump attached to Surgically implanted JPEG tube procedure done? I...
AliceJoyce profile image

Duopa pump

My fellow Parkie's, I went to my neuro yesterday and he told my about the Duopa pump and how...

Duopa pump and my day at work

Today at work in the interventional radiology department, i had a patient that was a pwp. He was...

Calling all DUOPA PUMP users

Recently I learned hard way that DBS surgery no for me. I am taking around 15 sinemet pills 25/100....
luba1 profile image

B1 dose adjustment, adjustment

I mistakenly decided my thiamine hcl (vitamin B1) needed an adjustment. I based the decision on a...

Moderation team

See all
CPT_Aleksandra profile image
CPT_AleksandraAdministrator
CPT_Anaya profile image
CPT_AnayaAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.