B1 Without Medication

[jimcaster]

Rafyaz recently asked whether any of us were taking B1 AND medication.

I'd like to ask a related question:. ARE ANY OF US WHO BEGAN TAKING B1 IN 2018 OR EARLIER STILL NOT TAKING ANY MEDICATION?

[ParlePark]

good question

[Millbrook]

My husband started on B1 February 2019.

Last year he started on Coronet Duo and PS 128 where he had the most marked improvements. He is not on any medication and recently discovered that he is gluten intolerant. Stopping gluten has resolved his persistent bloating and constipation.

His sense of smell comes and goes but mostly gone and his active dreams are still there but not so often. Everything else is normal. 🙏🏻

[jimcaster in reply to Millbrook]

Excellent. When was he diagnosed with Parkinson's Disease?

[Millbrook in reply to jimcaster]

He has not been diagnosed though a neurologist did say he was slower on one side.

He definitely had symptoms of PD ( my dad had PD) both motor and non motor since 2012 but now he only has loss of smell and active dreams plus stiff joints. He can’t walk if he does not do his stretching exercises every morning.

[Rupa88 in reply to Millbrook]

how much b1

[Millbrook in reply to Rupa88]

He takes 200 mg B1, a basic B complex and 300 mg truniagen

He used to take 1000 mg B12 methylated but stopped because recent tests showed levels were high.

[Debgiffen]

I'm not completely medication free but much reduced since I started HDT(High dose thiamine). I am almost 8 years since diagnosis.

I started HDT in January 2019 and I had very quick and impressive results. See my profile for the story. Over the last 4 years I have been taking less and less meds. At most, I took two 25/100 Sinemet every 3 hours throughout the day. Currently I am taking 1/4 Sinemet plus 2 NOW Dopa Mucuna every 3 hours mostly early in the day. I very seldom take anything after 2:00 but still manage to be physically active until early evening.

I am 65, very healthy, take no other medications, hike/walk 4-5 miles several times a week, have a large vegetable garden, do daily yoga and have an active social life. I am very careful about what I eat (I'm whole food plant based) and work at healing my body every day. After being so sick and disabled, my health is my main priority. I still have pain and stiffness (especially in the morning), occasional freezing, twitching, toe curling and other PD symptoms at times so, no, I'm not cured but I'm certainly doing much better than before I started HDT.

[Lumiere in reply to Debgiffen]

May I ask how much do you take B1? One dose a day?

[Debgiffen in reply to Lumiere]

Most days I take 1000 mgs with breakfast. Some days I take another 500 or 1000 at lunch and some days I skip it all together.

[Gcf51 in reply to Debgiffen]

Impressive story on bio, If I understand right, tried many meds but done worked. You were not on any meds before or after B1.

[Debgiffen in reply to Gcf51]

For 2 years before I started HDT, my MDS had me on every possible PD medication and they all wiped me out so much I spent most of my time in bed, unable to move. Even Sinemet would cause my legs to feel like rubber but I would take it because it would help with pain and stiffness.

Once I started HDT, Sinemet started working better for me. I don’t remember how much Sinemet I was taking when I started HDT, mostly I just remember how amazing it was to go from bedridden to functioning. That was life changing! 

For me, the B1 restored my energy and brain function and that has allowed me to work at healing my body. 

I don’t like the way Sinemet makes me feel. Yes, it feels good when it first kicks in by the constant on/off roller coaster is tiring. Mucuna works better for me and if I could find a consistent way to get mucuna to cross the blood brain barrier without that 1/4 tab of Sinemet, I would be off prescription meds completely. 

[Zeck in reply to Debgiffen]

Hi Debgiffen, I am livinng in Melbourne Australia. I have been diagnosed with PD in mid 2011. Some time last year i have returned to mucuna (powder) with Kinson (Simamet 25/100) taken every 4 hours. Even this small amount of dedication was causing side effects i.e. a lots of additional pain. With main support from my GP i found that here in Australia is possible to buy separately carbidoba (in casules) from compounding pharmacies with prescription. At the moment i am taking 4 times a day approx 40mg/each of carbidopa + every 4hrs 2tsp of mucuna powder (bought from australherbs.com.au). So far so good. I will try to add 1gr of B1 per day.

Regards Zack

[mauigirl18]

no medication yet and started B1 in 2019

[jimcaster in reply to mauigirl18]

Excellent! When were you diagnosed with Parkinson's Disease?

[mauigirl18 in reply to jimcaster]

In September 2018 Jim. Had noticeable symptoms for about a year before that though.

[alaynedellow]

i been on B1 since 2018 and hv not increased my meds since. I take 1 madopar 125 CR twice a day with 200 mg Thiamine. I was dx in 2015.

[gregorio]

I have been on B1 for 4 years, no meds. 1000mg a day, sometimes I take an extra 500mg tab during the day, also on NAC and NADH. posted plenty of info on here before. apart from increased tremors an my jaw, everything else much the same

[Gcf51 in reply to gregorio]

Does "B1 for 4 years, no meds" mean no meds ever...

[gregorio in reply to Gcf51]

Nearer 5 years, at the beginning the Neuro put me on Azalect and told me to come back in 6 months and add L/C to my prescription. After 3 months solid research on the internet and feeling tired all the time, I threw the Azalect in the bin, I have not been back to the neuro since.

[SAGoodman]

I am still med free, 3 years in!

[ElliotGreen]

I started taking B1 around 2018. I take 1.5 g a day. I haven't tried taking much more in any concerted experimental effort. I am not on levodopa medication. I am hypokinesia dominant (low movement in my right arm and leg). This is gotten worse, especially with my right arm, over the recent years.

[Manypony]

I’m still trying to find a helpful B1 dose. Dx 2019 no meds

[slimweiss]

My hwp was diagnosed in 2019 and put on Sinemet 25/100 every 6 hours which turned into one every hour after about a year so then he was switched to Rytary 245 and 95 mg every 4 hours. That sounds like a lot compared to what I read others are talking. We experimented with taking only the 245 every other time but that didn't seem to work. About 3 months ago I started him on the B1 at 500 mg and then upped it to 1000mg. recently. (500 morning, 500 afternoon). I read the book. It has not made a difference and in fact he has gotten much worse. Very stiff, talks weird, needs help doing almost everything. He walks great. The PT said he walks too fast! I'm at my wits end and feel like we are on our own here. His second neurologist is leaving! I would love it if he could get by on less meds. He also takes rasagiline and modafinil. Any ideas???

[gregorio in reply to slimweiss]

Have you looked at his diet, also taking NAC and NADH.. dont give up, there is an answer and remember that exorcise is by far the most important thing he can do.

[slimweiss in reply to gregorio]

still working on his diet. He loves anything chocolate! Hard to take that away too. He was taking a ridulous amount of supplements including NAC. Haven’t tried NADH. What does that do?

We try to eat healthy other than an occasional almond croissant. He eats gluten free bread and I read labels like crazy to eliminate sugar and other bad stuff. I give him mannos in his coffee in the morning. Also try to not mix food with his dosing. I’ve taken him off everything and he’s gone back to his original 245/95 Rytary doses every 4-5 hours. We’re trying to see if he can do a 5 hour spread between. Thanks for your encouragement!!! I love HU.

[gregorio in reply to slimweiss]

Diet and exorcise, Google NADH 20mg under the tongue. Inflation is the big problem in the brain, tied to the gut, I have been on a Keto diet for 4 years, litle or no carbs. I am the same age as your hubby, my posts are all here for you to read. If what he is doing is not working time to try something different

[slimweiss in reply to gregorio]

ha! He takes TruNiagen. That’s NADH! Didn’t realize it. He’s been taken by so many things.

He does try to exercise by walking as often as he can, he gets PT right now (a month out from fracturing his vertebrae) and then recently had another fall but didn’t break anything thank the Lord! His posture and left side is pretty bad. He has no muscle or strength. And this being the man who did gymnastics in college and played football in high school. He’s also not very coordinated so has a hard time following any workout routine. He was in Rock Steady boxing but it went too fast for him and he got frustrated.

I’m going to hire a gal who does personal training where we live so hopefully he can make some progress there.

Thanks for your suggestions!

[Fatherof5]

I am not on any PD meds. Still trying to find the right dosage of B1 however. Diagnosed 2yrs ago and have been using B1 on again off again for the last nine months or so

[1LittleWillow]

I started to have very obvious PD symptoms in Jan. of 2018, diagnosed in Aug. of 2018, began B1 in Nov. of 2018. I take mucuna as-needed (e.g. if we're going out with friends for dinner or attending a party). I generally don't take it on days when I'm at home doing housework/cooking or when going shopping.

My only symptoms (as long as I stay on B1) are tremor (left side), mild bradykinesia (left hand) and mild/moderate dystonia (left arm). My tremor has definitely increased this year, but I was extremely sick (strep followed by intractable sinus/ear infections), I'm dealing with mold allergies, and we've had 4 deaths in our immediate family, so lots of stress.

When I had strep (first week of January), I didn't need any mucuna for 8 days (sicker than a dog lol, but almost no PD symptoms). After taking an antibiotic, my tremor got worse. I've been pushing probiotic foods to try to heal my gut. I was on a steroid in early May, which also seemed to make my symptoms disappear briefly.

[amykp]

A few years ago I thought I read that B1 worked specifically with/on/in-addition-to Sinemet. And I thought I read this in a paper by Dr. Constantini himself. I could totally be mistaken--it was a while ago, but it was one of the reasons I didn't take it.

I was diagnosed in 2015, by DaT as well, still sinemet/mucina-free, but I eat a CRAZY strict diet, take a few supplements, and exercise like the world's about to end :o)

[KERRINGTON in reply to amykp]

Yes, I remember that too. I take mine with macuna.

[Astra7]

I have also noticed that when I am sick with something else my pd symptoms seem to improve. This seems counter intuitive, and I wonder why this happens.