Questions about B1 theapy: This is my... - Parkinson's Movement

Parkinson's Movement

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Questions about B1 theapy

19SugarBear46
19SugarBear46

This is my first post, however I've been reading the posts for some tme now. I have been trying the B1 (high dose thiamine) therapy for about 4 months now. I am taking 2 500 mg capsules in the morning and 2 500 mg caps around lunch time. I need to know from those of you who know more than I do, how long does it take to work? I didn't film myself prior to starting and I know I should have so I don't have a concrete reference point. My PD is not tremor based. My gait has gotten realy bad and I freeze almost constantly. I don't think I have seen any improvement in these symptoms yet. The one thing that has definitely changed is the fact that I am no longer constipated which is wonderful as I was quite constipated prior to starting B1 therapy. Some background on me...I was diagnosed in April 2014. I currently take 1.5 tablets of carbidopa/levodopa 25/250 4 times a day, one 4mg ropinrole at bedtime. I have just started taking a new medication, Nuriancz and I take 1 8mg tab first thing in the morning. My neurologist is a movement disorder specialist and I really like him, however, I think he is very conservative. There are so many folks on ths site that are so knowledgable I hope that you can give me some much needed guidance. Thanks so much

24 Replies
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Time to notice the benefit with B1 is very different for most. Some notice immediately and rejoice, but many notice symptomatic benefit after a while at such a subtle rate they need the before/after video comparison or the push test to confirm after many months, and unfortunately some do not notice any benefit at all. The fact that it helped your constipation is a good sign, but you might want to explore the below active thread that includes many links to more info and studies.

healthunlocked.com/parkinso...

Attention - #5 on the below FAQ link

healthunlocked.com/parkinso...

Here is a link from the team that wrote the book (figuratively) on high dose thiamine therapy.

highdosethiamine.org/

Here you can find great information to help you . It usually takes about a month or two to see a difference, but it is sometimes so subtle, you might not realize how much it's doing for you. Have you noticed any increase in your energy and stamina? Gait and walking? Mental clarity? Think about four months ago and compare to now. Glad it helps with your constipation at least! The correct type of thiamine is Thiamine HCL. No other types will work orally. You might consider adding another 1000mg and see what happens after another month. Good luck to you !

Thanks for your response and the link to the post.

Many of us here were personally treated by the late great Dr Costantini, himself, either by email or in person. He took care of me by email and free of charge too! He was a saint to us here. Some of us did better than others, but that's the thing with pd, isn't it? No two cases are exactly alike. One thing that always resonated with me was that he said if you take thiamine, you will halt or slow the progression and you won't experience dyskinesia. So far that has been true for me.

betil1
betil1 in reply to bassofspades

Dr. I didn't know Constantini was dead. I was very sad and cried. Provided invaluable services to Parkinson's patients. I would be grateful.

bassofspades
bassofspades in reply to betil1

I'm sorry to break the news to you. Its quite a loss but he left behind an incredible legacy. I'm honored to have known him, even if it was just by email!

"No other types will work orally." - this is not true. Even RoyProp has actually started with Benfotiamine and also tried Allithaimine with tremendous benefit until he later changed over to B1 HCl for Dr. C's monitoring.

There are certain types to avoid such as B1 mononitrate that may be toxic and damaging to kidneys at high dosage.

When Roy went to hcl, he improved so much he could brush his teeth and button his shirt! He's really the one that introduced me and a lot of us to thiamine, so RoyProps definitely deserves PROPS! LOL

Actually there's more to his evolution. He eventually got the dosage right, but at one point even considered going back to the formal forms from HCl. He now runs his Facebook support group for HD HCl, but that does not mean other forms do not work.

Sorry!

No need to be sorry. I just don't want to deter someone considering other effective routes in case the HCl doesn't work for them, as we're all different.

At least make it a water soluble form.

TTFD is actually water soluble while it has the ability to penetrate lipid cell barriers even without transporters, so such a high dose is not necessary to reach the brain. Benfotiamine is fat-soluble and while a few earlier lab mice studies showed that it does not directly pass the BBB, other human studies have shown it benefits the cognitively impaired better over the other forms- this may be due to its superior bioavailability through peripheral absorption or with its ability to improve the transporters functions over time in some (but not all) people. These B1 forms are to be administered with more advanced knowledge. I personally alternate these two forms.

If we’re purely discussing a “high dose” b1 therapy up to 4g+ (for passive diffusion) yes it only applies to B1 HCl for simplicity.

reedboat2
reedboat2 in reply to rescuema

Rescuema can you recommend a source for TTFD? Also, what dosage would you suggest for someone like myself who weighs 170 lbs? I currently take 1g per day Thiamine HCL with zero side effects. Thanks - JG

rescuema
rescuema in reply to reedboat2

You can take just one 50mg TTFD pill in addition to your B1 HCl probably without trouble. You can also choose to alternate for a week or so since you’re supposed to take some time off of HD B1 protocol every several months anyhow. A higher dosage is probably not needed since you’ve been taking B1 for a while and without deficiency. You can search either Allithiamine or Lipothiamine by Ecological Formulas on Amazon.

BlueHawaii
BlueHawaii in reply to rescuema

I take B1 sublingual. I was just trying to lower the number of pills I take each day. I thought it might be better for my liver and kidneys. I take other meds for other issues. I have followed a chat thread from a couple of women that are having really good success taking just one sunlingual tablet a day. And it is only 100mg. One lady now only takes it 4 days a week.

It is not hcl, but a dr told one of them that it is bypassing the digestive track so it doesn't need to be hcl. I haven't found a sublingual hcl.

rescuema
rescuema in reply to BlueHawaii

I've commented on this 2 days ago on another thread.

healthunlocked.com/parkinso...

The sublingual form is thiamine mononitrate form. Keeping the dosage at around 100mg will avoid toxic overdose but that does NOT mean the form is effective in raising the serum value enough to allow for passive diffusion into the brain for people who're compromised with transporters, but it does bypass the stomach absorption issues as I've mentioned. However, just because it raises the serum B1 concentration does NOT mean that it can pass through the BBB for some people especially compromised with transporter activities. You can test for B1 at a normal range and still experience problem with B1 deficiency in the brain. If you have started with injections or HD HCl and managed to restore the transporter/enzymes functions enough to lower the dosages to a much lower level (or don't have transporter issues or deficiency to begin with), you could possibly maintain the B1 level by using pretty much any B1 form sans stomach absorption problems via active transport. The only form that can reliably pass through the BBB without risking overdose for the majority including the genetically compromised is TTFD.

I suggest people read the following article to better understand the B1 mechanism and understand why the high dose therapy was probably chosen by Dr. C given B1 HCl's ubiquity and for the ease of mass remote monitoring.

ncbi.nlm.nih.gov/pmc/articl...

Sugar1946
Sugar1946 in reply to rescuema

I’m taking B1 HCL.

Thanks for your response. Come to think of it I feel like I do have more stamina and energy. I haven’t even wanted to take a nap during the day and I’m sleeping well.

I noticed improvement of constipation by the first week or two, but other improvements took almost 4 months.

I am also in the B1 therapy I was diagnosed in 2012. You seem to be taking quite a lot is initial dose I started at 500 g and built up to 2000 but some people still only on 1500. It does have a different effect with everybody it does not affect my constipation whatsoever which is unfortunate but it does improve everything else that I do I would Reduce your dose to 503 times a day four times a day and build up from that and see if that makes any difference however this is only my opinion and what has worked for me good luck

rescuema
rescuema in reply to sue2000web

It is actually better to start high and then lower as needed to gauge response, although this is highly dependent on individuals. See my response above why.

I remember I read that to much B1 makes symptoms worse. The recommended dose is between 3-4grams. I would reduce the daily dose to 4.5 and than to 4 etc and see if there is any improvement. Good like!

The effective dose range reported on this forum is 25 mg/day up to 4,000 mg/day of thiamine HCL/HCI. Here is a link that explains a bit more on dosing as well as contains all of the information that Dr. Costantini left with us.

healthunlocked.com/parkinso...

Art

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