B1 Intolerance

[JeanieBeanie]

My husband has tried taking B1 twice. Firstly with powder then recently with Solgar capsules as recommended. He started on 500mg capsule in the morning then 500mg late afternoon. After 7 days he felt it was making his symptoms worse and had to stop.I read how so many people are benefitting from B1 and wonder if it is because he has had Deep Brain Stimulation op. Anyone know?

[Hidden]

Seven days? To early for symptom improvement. Search B1 on webmd. How safe is thiamine hcl?

[JeanieBeanie in reply to Hidden]

His PD got worse. Is it the DBS? Is it normal to get worse before better.

[Hidden in reply to JeanieBeanie]

Was it normal variable symptom?

[Hidden in reply to Hidden]

Really, RoyProp? “Is B1 safe?” You joined Easilly ‘s bandwagon too?

[Hidden in reply to Hidden]

No

[ABDESSLAM1]

Stop for one week then take lower dose .

[JeanieBeanie in reply to ABDESSLAM1]

Lower than 500mg? Thats one capsule.

[ABDESSLAM1 in reply to JeanieBeanie]

Dr C advise to lower the dose to 400 am &400pm . If the symptoms worsen go to 300 til you find the right dose.

[Juliegrace in reply to JeanieBeanie]

There are people benefiting from as little as 100mg daily.

[55andpd]

JeanieBeanie I just started 250mgs b1 twice a day. My twitching is worse and my left leg is dragging. Ggggrrrrr. I had great hopes.

[Millbrook in reply to 55andpd]

You probably have to stop for 3-5 days and start again at 250 mg a day. I had to give up the 500 mg tablets and go to the 100 mg so that I could tweak the dose. Anytime symptoms worsen, stop n start again at half the dose

[55andpd in reply to Millbrook]

Thank you Millbrook. I’m not on any PD meds as I wasn’t that bad but the b1 has really aggravated. Is this normal do you think?

[Millbrook in reply to 55andpd]

My husband had the same thing. He has non motor symptoms- loss of smell, frequent night urination, 6-8 times a night, fatigue, coughing from swallowing. Not on any meds. When he was on 500 mg B1 then increased to 1 g symptoms got worse- active dreams, drooling, stiffness even greater fatigue, open jaw. Once you stop, all symptoms subside but it was quite scary. It seemed that everyone was on really high 1 g-4g but each time I stopped and reduced the dose after 2 weeks his active dreams would act up and I had to reduce again.We have been on B1 since Feb and are now working on 50 mg a day and tweaking it. He now wakes up 2 x a night to pee , has better balance and I have just added ubiquinol, Ribose 10 g a day (am and pm) B12 sublingual 1 g and 1 capsule Magnesium (66.6 mg- not sure if I should drop this since now they say that PWP have elevated magnesium)

I am also looking into tetrahydroxanthohumol TXN derived from hops which has the better effect than xanthhohumol as it does not have the estrogen effect.

Check with your doctor if you are unsure. Everyone is different

[55andpd in reply to Millbrook]

Wow. My smells not too bad I’m not sure if it’s pd. I may be in denial though. Strange symptoms I have and some drs are saying it’s not others say yes. 🥴

[mannp in reply to 55andpd]

The sense of smell is almost or completely gone in PD, not “Not too bad”.

[55andpd in reply to mannp]

Well Just shows Im right to have no faith in neurologists and mds.

[Niggs]

Hi Jeannie,

Nobody knows for sure how B1 works, personally I think the DBS may have an effect in the sense that B1, for most of us, is to supplement our prescribed treatments.

It has become apparent that the original protocol, now it is being trialled around the world, is too simplistic. For example, many people are getting relief from lower doses, some as low as 100mg, and the time to assess whether a dose is correct or not is also highly variable and generally longer than originally thought.

Roy makes a valid point, does your husband often get a worsening of his symptoms at times? My biggest hurdle was just that. My symptoms are poorly controlled and always have been. I constantly fluctuate, I've been on more drug combos than you can shake a stick at, yet as we all desperately want answers I automatically blamed B1, when in fact it was more likely just normal for me.

How I did it was to start on 100mg twice daily, ramping up after a week until I got a 'sudden' dramatic worsening, which was different to the normal ups & downs. This for me was at 2000mg. I took this as my upper limit. I'd noticed various slight improvements at 1000mg which I took as the start of the therapeutic zone, so reasoned 1500mg would be near the mark.

I'm now trialling 1500mg over a few months and the motor benefits are a maybe but the improvement in mental health is dramatic.

Hope this helps

Nige

[JeanieBeanie in reply to Niggs]

Thank you Niggs. That reply was very informative.

[mannp in reply to Niggs]

Thank you for stating clearly your assessment. Someone asked Roy if he was being sarcastic when he mentioned normal fluctuations.

No two days are alike. I agree with you completely. I’ve been on high dose, 2 grams daily since November. I don’t think people on these low doses are getting the full benefit. They aren’t comprehending the reason to start at high dose and lowering as necessary. Maybe you didn’t either. I followed what was recommended.

[Niggs in reply to mannp]

The problem with starting high is how high? Originally the initial 'high dose' was determined by Dr C's assessment and based on time since dx, weight, current meds and a pull-test video. Dr C himself is now sadly ill and is therefore unavailable. However, before his illness he was starting to update his own protocol as more people began reporting good results on much lower doses. In the absence of the Dr's guidance, starting low, though it takes much longer, is, in my opinion, a more accurate way to find the maximum dose before it makes things worse and has the added advantage of highlighting the lowest point at which benefit is gained, a bit like conventional meds.

As you can see, I comprehend very well.

Thank you for your input.

[DJSa]

I started B1 therapy a few weeks ago, eventually getting up to 2000 mg per day (like you I was taking 500mg Solgar tablets). I noticed a benefit after 2 days, particularly with mood and the clearing of 'brain fog' that I had. However after about 10-12 days I noticed my muscles were beginning to cramp (especially both calves) and I had pain in various parts of my limbs. I also felt fatigued. It kept getting worse so I stopped the B1 and within 2 days the symptoms subsided. So I can concur with your experience. I have today started on 250 mg. I noticed that when I started initially, I was getting improvement on 500 mg p.d.. So I am trying out a lower dose to see if I can benefit from the therapy but on a lower dose.

[DJSa in reply to DJSa]

By the way, I don't have DBS. I was dx 3 yrs ago, currently my motor symptoms are unilateral.

[Williemom]

So are we saying that B1 therapy is individual and you have to experiment for yourself......one dose doesn’t fit all?????

[Millbrook in reply to Williemom]

Yes

[1rocketman]

You can purchase B1 capsules in 100 mg size. There are the rare few who need less than 500 mg a day. I purchased the Solgar brand at Vitacost online.

[MarionP]

I think you want to check to see that the B1 was of the HCL (water-based) variety, and not the other variety that will collect in fat tissue and become toxic thereby. It is also an individual tolerance matter, there are inherent mechanism to B1 pharmacodynamics that some people find irritating to allergic. If so, titrate down to something you find tolerable, and perhaps gradually bild from there. Thiamine HCL will wash out in urine because it is water-solvent, other preparations collect in tissue because their molecules are adipose (fat) soluble, meaning they can collect in fat tissue and become toxic in the sense of overdose. Meanwhile, it can take up to several months to determine benefit, so that means that a dose must be tolerable to that extent before your test can become longitudinally conclusive. Based on individual reports, the dose range is wildly wide, so you have to find your own level of toleration, then wait, and gradually increase based again on your tolerance level. The stuff that is HCL, i.e., water soluble, won't kill you as far as I know, the part you can't put to use, irrespective of dose, usually just passes out in urine. Always talk to your doctor first, of course. If you cannot tolerate, or cannot develop tolerance, by all means titrate back or give it up. But our Italian doctor friend has shown remarkable clinical benefit, so it is worth considering, in case it luckily applies in your case.

[JeanieBeanie in reply to MarionP]

Thank you

[mannp in reply to MarionP]

Thank you for your explanation. I’ve been trying to explain this to people. They have become hesitant to try high dose. I let them know it is nontoxic and eliminated in the urine. I don’t think these people are getting the full benefits. They start to feel better or symptoms start to improve and they stick to that dose. All my symptoms improved greatly or disappeared completely using high dose. I take 1 gram twice a day to equal 2 grams. I’m very happy I followed Dr C’s protocol. I just hope they don’t see progression stopped. I don’t want anyone giving this a bad name in a few years if their progression doesn’t stop because they didn’t follow protocol.

[MarionP in reply to mannp]

Some people forget, or didn't know, that Dr. C's original published paper starter dose was 2 gm oral dose, one "at breakfast" and one "at lunch." (Or the injected equivalent). But people can titrate up or down depending on whether they see the "irritation" side effects. He also suggested to persist for 3 months to give the effects time to accumulate, but he also said when you get the skin reactions, itching or irritations, just to back off to the point that you could tolerate. He didn't explain anything really about the mechanism, he probably couldn't, because the entire discovery process was clinical, not experimental; which also avoided many arguments as well, as there was nothing to argue about, just do it or don't. Then he published his videos of the cases, and that also went a long way to convincing people to try it.

[mannp]

I don’t understand. Roy is always honest and sincere. We all have fluctuations in our symptoms.

[Hidden in reply to mannp]

I was replying to RoyProp ‘s other comment asking if “B1” is safe!

First, Easilly and now RoyProp. Both are questioning the wisdom of using B1. Both are rabid promoters of B1. Is this a joke?

[mannp in reply to Hidden]

Roy has never questioned using B1. He’s in his seventh year I believe. It has helped to relieve all his symptoms. He promotes the b1 protocol of Dr. Constantini. Why do you think he’s having 2nd thoughts? Do you think this is a joke? You’ve asked this at least twice. I use b1 and have had great success. I promote this protocol every chance I get.

[Hidden in reply to Hidden]

I indicated symptoms are variable before B1. Not to mistake for reaction to B1.

[amatista in reply to Hidden]

Hello

I would like to know testimonies of injectable B1. and exactly what is Dr. C's protocol about it.

[Hidden in reply to amatista]

highdosethiamine.org

[mannp]

Are you sure it is HCL? I was under the impression Solgar only has 500mg tablets and not 500mg capsules. It is very important you are taking Thiamine hcl. No other Thiamine works such as mononitrate. It has to be the hcl.

[JeanieBeanie in reply to mannp]

It is the one suggested on this site that people in the UK are buying from Amazon UK as I think Roy Prop is aware of. I was hoping I would hear from someone who had had DBS and was using B1 and hear their experience.

[Millbrook in reply to JeanieBeanie]

I read somewhere on HU that having had dbs does not affect yr use of B1 therapy

[amatista]

Hello

I would like to know testimonies of injectable B1. and exactly what is Dr. C's protocol about it.

[mannp]

Are you sure this is HCL? I only ask because I’m not aware of Solgar selling 500mg capsules in b1 Thiamine hcl. I thought they only had tables.