I started my dad on HDT Vit B1 about 2 weeks ago- 1g (100mg x 10) in the morning with C/Levodopa and another 1g( 100mg x 10) in the afternoon before breakfast and lunch respectively. I see some minor improvement (better mood and less constipated- from bowel movement once once every 7 days to about about once everyday 3-4 days ). I am not sure if this dosage is the optimum dosage for him as I can't perform the Pull Test on him given that he's on wheelchair. Does anyone here know how/what I can to do to help dad find his optimum Vit B1 dosage. What test can I do to achieve this?
BTW, my dad also very bad drooling, bowel and bladder incontinence- Vit B1 has probably slightly improved these symptoms but not much. My dad also has very bad neck and abdominal muscle tension after he takes his C/L medication. This muscle tension usually occurs 45 mins to 1 hr after he has taken his medication and sometimes lasts for 3 - 4 hours. During this time, his face would be distorted in be in pain and discomfort. It really pains and hurts me to see my dad suffering in pain. Vit B1 seems to ease this neck tension by say 20%.
I am really looking to some advice.
Thank you so much
Cecilia
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GTSKIN007
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Go to this web site and read the instructions, Join the group of users and fill in the medications in the chart and you will ten see just how the specific medications are doing for your dad. Lots to ponder on the graph.
Have you read info posted by Chartist ? If not check it out on his member page. There is a ton of info on HDT. I'm not on meds, but the muscle pain he exhibits after taking the c/l seems dreadful, and dangerous...esp 4 hrs long. What does his doctor say abt that. Could it be a side effect of the carbidopa ? Try posting a question to this group abt your father's problem when he takes c/l..hope you can get more info than I can offer.
Thanks Kerrington for your advice. I will post a question later re my dad's reaction to the c/l medication. Muscle pain contraction and pain aside, he also experinces more drooling and his speech becomes slurred. His doctor said there's nothing he could to do help dad in these areas. Just got to grit his teeth and bear with it and wait for the side effects to wear off.....
Hopefully HDT Vit B1 together with changing the c/l dosage will help him...
Be sure to add magnesium - if he is deficient and most likely is, b1 alone won’t do much good. Also, try adding a good balanced methyl B complex as well. All Bs work in concert to assist B1 to lead its energy cycle and your father is likely deficient especially in B6 due to the long term use of c/l. Take the B complex (with P5P) furthest away from c/l med. I prefer Magnesium L-threonate from Life Extension and B complex plus from Pure Encapsulation.
First, welcome to the forum and congratulations to you and your dad because he seems to clearly be an HDT/B-1 responder and an early responder also! What Dr. Costantini found over a period of about 7 years, he saw no disease progression in his HDT patients!
It is very good that your dad is already showing a positive response because some forum members have reported no response until seven months and some have reported no response, but the majority have responded positively. The early responders are what I consider to be the lucky ones because once you see a positive response, it becomes much easier to continue HDT!
I am not a doctor, so I can not give any advice on how much B-1 to take, but I can tell you some things that Dr. Costantini has said, that may be helpful. One, he said that the correct dose of B-1 should only show benefit in terms of symptom relief and that is what you are describing in your dad's case and based on your description of him, he sounds to be well past any potential "honeymoon period" so the fact that he is already seeing positive results at just about two weeks in is great and though only minor improvements at this time, it is a very good indication because Dr. C has always maintained that improvements accrue over the first 6 months of treatment, but forum members have reported new benefits appearing beyond the first 6 months!
Generally, as long as improvements were appearing and lasting, Dr. C would have his patients stay at that dose and would only adjust the dose if suddenly the improvements started going backwards, so until then, it sounds like you are on the right track! Regarding the constipation issue, many members have reported improvement in that area to all the way to normal in many cases. To me, constipation always seems to make everything else worse, so this improvement for your dad early on is very good! Mood improving is also an early symptom improvement that members have reported. Other reported early improvements are improved facial expression, less fatigue, less drooling or no more drooling and better sleep. There are others, but that should give you an idea that you are moving in the right direction.
Regarding the pain and stiffness after his C/L dose, there are many members on this forum who are well versed in the use of PD meds and can probably give you some good recommendations on that matter. Just a guess on my part, but it sounds like maybe he is getting too much all at once so perhaps a delayed or slow release version of carbidopa/levodopa may help, but other forum members will be able to give you better ideas.
I am including a link to a page I wrote about HDT/B-1 that you may find helpful. It has a FAQ page where Dr. Costantini answers 58 frequently asked questions about HDT, it has a page that lists 80 symptom improvements that have been reported by forum members that they relate to the addition of B-1 to their regimens, there is a general information page, there is a page where members discuss how they are dosing their B-1 and there is a huge page where members are discussing using HDT and how it is affecting them, there are also some links to suppliers of pills, capsules and bulk powder. Overall the link should answer most if not all of your questions regarding HDT/B-1.
Two things you should start doing immediately are one, take lengthy videos of your dad talking and maneuvering in his wheel chair immediately before he improves any more. Take regular update videos every two weeks for comparison to the original video at later dates. Two, try to take daily meticulous notes on everything that you think is related to his use of B-1. Especially pay close attention for any signs of a worsening of the improvements that you have seen as that could indicate that the dose is too high according to what Dr. C has said in the past.
I just want to reiterate that you and your dad are off to a very good start! Please keep us posted on his progress, because your updates help to build the HDT knowledge base on this forum and that can help many other PWP who are considering HDT/B-1 or even members who are already established or testing B-1.
Continued good luck to you and your dad! One last thing, the more details you give about your dad and his condition, the better you will find the answers to his PD medication issues!
Thank you so much for your very detailed reply/advice. I really appreciate it! I thank God for people like you who spend so much time and effort in helping other PWPs to get better. i'll definitely read up on the HDT page that you recommended and hopefully learn something to help dad get better.
My wish is to see dad improves from being on a wheelchair to a walker and finally being able to walk just a normal person. I too hope everyone here on this forum will win the battle against Parkinon' and enjoy a good quality of life.
Regarding mood and your dad, if his mood does not continue to improve as time elapses on B-1, something else you can consider and discuss with his doctor is very low dose lithium orotate at less than 21 mg per day. It is an over the counter supplement at that dose and is inexpensive, but his doctor should be consulted to make sure it is compatible with all that he is taking. Here is a link to a short post I wrote about it and some of the replies are good also :
My husband was diagnosed in December 2018. Started B1in May and worked up to 4 g a day , it did take a while to see results . It has helped with non motor symptoms but not with tremors. Also takes segasaline which helps with mood. He is 66 and does exercise. Also takes CBD.
Look at Mucuna Pruriens, a natural form of L-dopa. Combine it with 4-htp and L- tyrosine and L-Cysteine. It has worked for us for tremors. No pharmaceuticals for us ever!
Here is a link to the HDT/B-1 FAQ page. Scroll down and read Q&A # 35 and just below is a video where Dr. Costantini demonstrates how to do the push test.
If you are considering HDT/B-1, you should video every push test so you can have a record to illustrate any changes either positive or negative because the push test is one method that Dr. Costantini uses to help determine if the B-1 dose is close or not.
Thanks for your advice and the link to the video. Not sure if I could perform the pull test on dad as he is on wheel-chair once he's out of the house. He is now at Stage 4 or 5 . He needs assistance to get up from a sitting position and uses a walking frame to move around in the house which is not more than 8 time a day (90 % of his waking Basically, he needs assistance with the activities of daily living such as toileting and showering. He is actually quite frail and weak to I am hesitant to perform this test on him ( I have never done this before and I am worried that I might not be able to catch him in time should he fall). Are there any other tests that I could perform on him in order to determine his optimum Vit B1 dosage?
I have now suspended his Vit B1 and intends to continue the suspension for a week or so and then decide what to do next.
One important issue is the constipation. Apparently according to the neurologist at our Movement Disorder Clinic, it’s been proven that constipation cuts down the effectiveness of levadopa by 25%. My husband has prunes on his breakfast with other fruit, a glass of prune juice during the day, protein powder and only if necessary, Movicol. Bowel is now working daily.
Some updates re my dad's conditions/reactions to HDT B1.
Dad reacted positively to B1 in the first 3 weeks (1g in the morning & lunch), improvements include more blinking, better mood and clearer speech, his bowel movements from once /twice a week to once every 2 days. However, dad's conditions started worsened last week, more intense muscle cramps/tension (dystonia) after taking the levodopa and 1g B1 in the morning and afternoon. His symptoms were worse than before he started taking Vit B1. Thinking that I might be overdosing him with Vit B1, I reduced the dosage from 1g twice a day to 500mg twice a day since last Mon, but dad's symptoms did not improve even with the dosage reduction.... Yesterday he was at the physio centre, but he could not even complete 1 exercise successfully. For example, before Vit b1 he could do the leg exercise with 2 kg weight but yesterday he could not even do this exercise with 1 kg weight. His physiotherapist was concerned and asked if something had happened at home which caused his conditions to worsen. Today, I have stopped his Vit B1 supplementation as I'm not sure what to do and how to help him.
Could anyone of you please chime in. I am really at my wit's end and feel like giving up....
Whenever you reduce a B-1 dose due to a worsening of symptoms, you are supposed to completely stop B-1 at least until the increased symptoms return to the previous normal or about a week or so. Just reducing the dose is not good enough and just drags out the dose finding process and does not allow B-1 to return to a native level quickly. Once you stop B-1, you should take meticulous notes for later reference. Dr. Costantini always said that any increase in symptoms due to B-1 overdose will go away gradually after B-1 is completely stopped.
The 500 mg dose may have been a correct dose, but you can't determine this by just reducing the dose with no stoppage of B-1 for days!
Your dad is clearly a B-1 responder, but the increased symptoms suggests the dose is too high! Please keep in mind that the range of effective dose seen on this forum is as low as 25 mg/day up to 4,000 mg /day.
Wondering if your Dad has tried Amantadine? The manufacturer is Bionpharma, because another company’s product had too many side effects for Ken but he tolerates this one well.
It helped my husband tremendously-his dystonia in leg and back spasms are gone!
Don’t give up on High Dose Thiamine...it really is worth finding the correct dosage.
Prayers that you and your father for comfort and joy.
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I too hope everyone here on this forum will win the battle against Parkinon' and enjoy a good quality of life. 
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