Increasing my dose of B1 after 4 years and 7 months

[1LittleWillow]

EDITING TO ADD: healthunlocked.com/cure-par...

I've been taking high-dose thiamine HCl since early November of 2018. I began by taking 500 mg/day for several months, then increased to 1 gram/day. I've tried to increase my dose many times over the years to see if I might experience even more improvements, but that has always quickly resulted in a significant return/worsening of my symptoms (increased tremor, severe fatigue, left leg drag, no left arm swing, urinary urge incontinence, headaches and joint pain, apathy, brain fog, and word-recall problems). As long as I've stayed on B1 at 1 gram/day, my only symptoms have been left-side (primarily left hand/arm) tremor, moderate bradykinesia, and occasional mild dystonia (which are all eliminated with mucuna plus carbidopa, when I choose to take it). FYI, I have also experienced some major depression and anxiety, but that's totally controlled by taking mannitol.

Over the past 2 months, I've been experiencing brain fog, fatigue, urinary urge incontinence, and very noticeable word-recall problems. It was really scaring me because it felt like the B1 wasn't working anymore and my PD was suddenly progressing.

I decided to try increasing my B1 dose to 1500 mg/day, and I started to feel better. I then increased to 2 grams/day, and all of my symptoms have again resolved with the exception of my "normal" left-side issues. I've been taking 2 grams/day for almost 2 weeks now and am feeling great again.

I've been wondering if my increased need for B1 could be the result of my taking mucuna plus carbidopa since the end of September 2022. I don't know, but I thought someone might find my story interesting and/or helpful.

[park_bear]

Thank you! That is interesting and helpful.

[Nitro53]

Why do you think when you increased it the first time it went bad but when you increased it again you feel better this time?

[1LittleWillow in reply to Nitro53]

Apparently my need for B1, which held steady for over 4 years, increased recently. I don't know why. Possibly due to other supplement/medication changes, possibly due to the way I'm metabolizing the B1 (e.g. gut health), possibly because of disease progression? I have no idea.

[Kia17]

During years of taking B1, have you been taking Magnesium with it? If yes, what type of Magnesium and the dosage?

[1LittleWillow in reply to Kia17]

Yes, I've generally taken about 400-600 mg/day. I usually take malate or citrate in the morning, threonate in the afternoon, and glycinate at bedtime, but I take other forms every once in a while just to get some more variety.

[Kia17 in reply to 1LittleWillow]

Don’t you think 600mg is too much magnesium? Knowing that we also receive from our daily food intake as well.

[1LittleWillow in reply to Kia17]

That's why the amount that I take varies. If I'm eating a lot of magnesium-rich foods, then I take a bit less. There are occasional days when I skip it altogether. I base a lot of what I do on how I feel each day. I'm not trying to tell anyone else what to take or how much to take. I think the need for supplements is highly individualized.

[Kia17 in reply to 1LittleWillow]

I think dosage matters. Dr Costantini’s advice of magnesium was 150 to 300mg max.

If you look at some biochemical pathways, high magnesium has adverse effects.

All the best

[1LittleWillow in reply to Kia17]

I appreciate your concern, but I generally just go by how I feel and what my body is telling me. I've been doing this for almost five years and have taken various supplements throughout my life prior to my PD diagnosis, and it's going pretty well, all things considered. I've also had blood work done, and everything looks good. I prefer not to mess with success lol.

[Rebtar in reply to Kia17]

what are the bad effects of too much? I I take a higher dose and it helps to move my bowels.

[Kia17 in reply to Rebtar]

Early signs of excessive magnesium intake can include low blood pressure, facial flushing, depression, urine retention, and fatigue. Eventually, if untreated, these symptoms can worsen and include muscle weakness, difficulty breathing, irregular heartbeat.

Doses less than 350 mg daily are safe for most adults. In some people, magnesium might cause stomach upset, nausea, vomiting, diarrhea, and other side effects. When taken in very large amounts (greater than 350 mg daily), magnesium is POSSIBLY UNSAFE.

[Rebtar in reply to Kia17]

thanks

[LorenzaS]

hello little willow,

I am taking 2 grams a day since a couple of months. I have stated taking b1 in February and have increased from 1 to 2 slowly. I also think it depends on body mass , kg. I am quite tall and big build and definitely not slim .

Last month I went to see Dr Fancellu in Italy, I am Italian but I live in Portugal, Dr fancellu worked with Dr Costantini, the Dr that discovered the vitamin b1 therapy for PD.

He suggested, Dr Fancellu, that I should take 3 gr. Per day but it is impossible for me because there’s a side effect that I don’t like , meaning by taking vitamin b1 in 3 gr a day dose , I need to go to the toilet every 10 minutes as I find it strongly diuretic, so I have returned to 2 gr a day for the time being. I will try and see if I can increase by taking another half gr in the night without side effects.

Stay strong and all the best,

.

[1LittleWillow in reply to LorenzaS]

When I first started taking 1 gram per day (in 2019), the benefits continued to increase for 7 months before they finally plateaud. They then remained fairly constant for 4 years.

[NewHope1961 in reply to LorenzaS]

May I ask what is name of the the city in Italy Dr Francellu practices in? I can look him up. I live in the US but would travel there in order to see him. I was diagnosed in 2005 other than the “ frozen feet “ I have recently developed I’ve been okay through out the years except when I play around myself with the doses, thus the interest in seeing him in person. Thx

[LorenzaS in reply to NewHope1961]

Dottor Fancellu works in Genova at San Martino hospital email [e-mail]. He speaks English.

Good luck

[NewHope1961 in reply to LorenzaS]

thank you

[Margot59 in reply to LorenzaS]

Can you tell me how you drink 2gr B1? I was taking 500 grams of B1 along with levodopa every 4 hours, but I had rubber legs. Now I drink 1 gram before lunch and 1 gram after. It's always around 4pm when I get home from work. What is the right way to take it? Best regards.

[LorenzaS in reply to Margot59]

I take 2 pills in the morning at around 8 am and 2 in the afternoon around 4 pm.

[1LittleWillow in reply to LorenzaS]

I do the same, LorenzaS.

[Dior2008]

How much Mannitol do you take?

[Caro-1973 in reply to Dior2008]

Hi Dior2008! Suggested Mannitol 10 gr daily. Perhaphs 5 with your Coffee at breakfast and 5 in the afternoom.

[1LittleWillow in reply to Dior2008]

I usually take 2 to 3 teaspoons per day (sorry for my English measurements, I don't know how many grams that is). I divide the doses throughout the day. I don't take it all at one time.

[gregorio]

interesting, I mirror your symptoms dates and timings with B1, all right side, have been toying with moving up to 1500mg recently. will try anything to ease tremor.

[STEWBABY in reply to gregorio]

MY PARKINSONS NURSE AT MY REQUEST, PUT ME ON 1 MG PER DAY OF RASAGILINE WHICH HELPED MY R/H TREMOR CONSIDERABLY PLUS MADE ME A BETTER PERSON TO LIVE WITH-SO MY WIFE TELLS PEOPLE!! - MAYBE WORTH A TRY. GOOD LUCK .

[1LittleWillow in reply to gregorio]

B1 has never helped my tremor. It helps all of my other symptoms, but not my tremor or bradykinesia. I occasionally get mild dystonia, and it seems to help that a little, but it doesn't eliminate it either.

[Jimmyalp]

good news but probably short term lease,I hope not in your case.problem is everyone DNA structure responses different way to these vitamins.i started with 4oo a day until 2000 barrier mg result was tremendous success until 2 weeks past,than square one again. it is dependent on your age also your body systems responses. I changed my diet became vegetarian and I used take 250mg stalevo every 3 hours as a young on set patient, now I m down 50 mg every 3 hours.what I figured out las 6 years which is I my Parkinson's appeared, stay away from stress,all types meats and junk foods also alcohol, unfortunately difficult but you got to do it if you want manage your illness.

[gregorio]

Yes, I have put a lot of time into this and the general consensus is B1 is not effective for tremors. Wish we could find something ,

[Dap1948]

I appreciate your telling us of your experience with B1. I am constantly updating my understanding of the therapy. I wonder if you belong to my facebook group?

I haven't come across anyone who has successfully increased their dose overtime. Most have a similar experience to the one you had initially if they try to increase - worsening symptoms we like to call 'overdose' symptoms.

facebook.com/groups/parkins...

Presumably you didn't consider trying a reduced dosage? When I started B1 six years ago I was on a dose 28 times greater than I now take. I reduced it in steps everytime my symptoms worsened a little. By reducing the dose I have managed to maintain my good results for six years. My doctor says that I am a-symptomatic. Not bad for over 13 years since diagnosis.

[Turnipbarrow in reply to Dap1948]

would you mind sharing if you take medication or mucuna and how much how often? When your doc says you are asymptomatic is that when on medication? Thsnk you so much! Just for information purposes not to replicate what you do. Trying to figure out some stuff for my hwp.

[Dap1948 in reply to Turnipbarrow]

I take 250 mg a day of levodopa meds a day (100 mg, 100 mg and 50 mg). I sometimes have a bit of a tremor late at night but wake up without a tremor. I have no rigidity or bradykinesia anymore thanks to this now very tiny dose of B1.

[Fed1000 in reply to Dap1948]

Hi Daphne I write from Italy and I bought your book which I read with interest. If the purpose of Vit. B1 is the replacement of Levodopa in the treatment of symptoms of PD and you are taking a small amount of Thiamine, don't you think you can increase it and go down from the 250mg. of Levodopa? Sorry

[Dap1948 in reply to Fed1000]

Thiamine doesn’t replace dopamine, that’s what your meds do. I am not myself a scientist, but Dr C suggested that thiamine saves ailing neurons and encourages them to function once more. In Parkinson’s, individuals seem to have a threshold, which, if you go over, causes over stimulation. This seems to increase agitation, tremors, disturbs sleep etc. What I’m saying is that levodopa and thiamine do different jobs.

[1LittleWillow in reply to Dap1948]

Yes, I'm a member of your group and Roy's as well (have been for years).

When I take mucuna, my MDS says that I'm asymptomatic (I just saw him last month), so it sounds like we're pretty similar. My UPDRS last month (on mucuna) was 1. He says that I'm actually doing much better than his patients who take Sinemet, which both surprised and encouraged me. I had taken Sinemet for only 2 months and probably never really reached a therapeutic dose, but my UPDRS while on it was 37. My UPDRS on mucuna without carbidopa was in the teens.

I've tried reducing my B1 dosage in the past many times, but my symptoms that are so completely controlled by B1 always come back. One gram/day has been a constant for me for 4 1/2 years. I did try reducing my dosage when my symptoms started to get bad a couple of months ago, but it just made it much worse. As I said, I finally decided to try increasing my dose instead, and I am feeling really great (again) now. If I notice any more changes as time goes on, I will definitely share them here.

Hmmmm... I was just thinking back on old symptoms, and I actually HAVE experienced tremor reduction from B1 because I no longer have internal tremors or slight tremor in my jaw (left/affected side) and tongue that I had early on after my diagnosis. 😊

[b-bobble]

Dap- what is the B1 dose that you take?

[potbatch]

Hello - I am fairly new to this forum so I hope you will forgive me if I am asking too basic a question. You say that your remaining symptoms are eliminated by taking Mucuna plus carbidopa if you choose to take them. I am curious as to why you should choose not to take them if they have such a positive effect.

[1LittleWillow in reply to potbatch]

My symptoms just aren't that bad, and because I have to time my B-complex supplement (because of the B6) and protein intake so as not to interfere with the L-dopa, it's simpler to NOT take it. I prefer to only take mucuna when I want to be 100% tremor-free. If I'm at home cleaning, cooking, hanging out with my family, etc, the tremor just isn't that big of a deal (yet). The other day, I was able to install new fill valves on two of our toilets without any meds--I generally function pretty well without it unless I'm trying to do really fine motor stuff. I was diagnosed in August of 2018, and I am basically at exactly the same level of functioning (and in some ways better) than I was at that time. My tremor is a little more pronounced now, but not much. When it gets to the point in the future that it's really bothering me, then I suppose I will take mucuna on a regular basis.

Editing to add that I do take it when I'm going out shopping because I get a bit self-conscious with the tremor (I'm an introvert, so I REALLY don't like to draw attention to myself), and I definitely take it if I have doctor or dentist appointments or social gatherings.

[Gcf51]

Are you still taking the higher dose? As Dap1948 indicated as I understand most reduce their sweet spot dose not increase over time.

[1LittleWillow in reply to Gcf51]

Yes, I'm still taking 2 grams/day and feeling great. My energy levels are back to normal, and all of my symptoms (except tremor) are definitely gone again.

I have no explanation for it. The only things that have changed (relatively) recently are that I started adding carbidopa to my mucuna at the end of September, and I started using an estrogen patch a few months ago. All of the other supplements I take have remained the same. I had been experimenting with citicoline, but my results became too unpredictable, so I've been taking a break from that for now.

[Akita4me]

What have been your side effects from the thiamine? I get a warm sweating feeling from my head. I am just starting the thiamine and am doing it sublingual because I had some stomach issues from the pills. Thanks in advance

[1LittleWillow in reply to Akita4me]

I don't experience any side effects from B1 (thiamine HCl). If I take too much, my Parkinson's symptoms that go away with the correct/optimal dose start to reappear, but that's an "overdose" reaction, not really a side effect.

[Gcf51 in reply to 1LittleWillow]

Overdose is really the wrong term. The correct term is "return of symptoms". The sweet stop is a dose less than "return of symptoms".

[1LittleWillow in reply to Gcf51]

I just use that term because it's what everyone else uses on the fb page. 🤷‍♀️

[DonnaMc1968]

where do you purchase sublingual B1?

[1LittleWillow in reply to DonnaMc1968]

I don't use the under-the-tongue version of B1, but the one most people take is Superior Source MicroLingual Tablets. You can buy them on Amazon.

[ForViolet]

Any update on your progress?

I've just raised my husband's dose. We're doing a trial now. He has been on 2500mg since January of 2022. He started 3000 yesterday.

We originally started him on the thiamine HCl form since Dr C recommended it for those not using the injections.

I just looked into mucuna but he has heart problems, so contraindicated.

[1LittleWillow in reply to ForViolet]

Yes, I'm planning on writing a follow-up post! I have more/new info to share as of this past week. I just haven't had time yet because we had company this weekend, and now I'm trying to get caught up on laundry, grocery shopping, etc. 😜