What is your experience of B1/thiamine hcl without Park meds or

Without Parkinson's meds or any other supplement?

[jimcaster]

I was diagnosed in May, 2018. I began high dose thiamine within two weeks of diagnosis. I also take several other supplements, but I don't take any medication. I don't know how much credit to give to thiamine and I obviously have no idea how quickly the PD would progress without it, but handwriting remains my only troubling symptom. If I continue at this pace, I have nothing to fear.

[Hidden in reply to jimcaster]

Thank you. A few others comment similar experience. I will watch this post.

[ryanJames1 in reply to Hidden]

Hi Roy

I stopped as I’m not on meds and I couldn’t discern any improvement I also had concerns when blood tests showed extremely high levels

[chartist in reply to ryanJames1]

Dr. Costantini said that all of his patients in Italy that he tested for thiamine deficiency always showed "in range" prior to starting HDT/B-1, but once they started on B-1, their thiamine readings were off the chart, always.

Art

[ryanJames1 in reply to chartist]

Hi Art

My kidney function has improved

[ryanJames1 in reply to chartist]

sciencedaily.com/releases/2...

Maybe nothing to do with thiamine

[chartist in reply to ryanJames1]

ryanJames1,

That is information I was not aware of regarding another potential health benefit of B-1, thank you very much for sharing that very useful information with the forum!

Art

[WinnieThePoo in reply to jimcaster]

We have swapped notes before, but for a bit of balance, I was diagnosed March 2018, confirmed by Datscan May 2018. I am right handed, and my PD affects my left side most, so I have no handwriting issues. I am not on any conventional symptomatic medication, including natural ones, and not taking B1 (other than in tiny doses in a vitamin B complex). Mostly things are better than a year ago, although mild tremor is a fluctuating phenomena. I attribute the improvements and stability to exercise primarily. I guess 12 months newly diagnosed is too short a time to conclude much.

[jimcaster in reply to WinnieThePoo]

I agree, Winnie. One year is probably too soon for any of us to know specifically what does or does not work...other than exercise, which seems to be universally accepted as helpful.

[salojimenez in reply to jimcaster]

Jim

I started this year with constipation, sleep disturbances, loss of smell and dizziness, lastly I have been noticing gat disturbances also including pain in the back and shoulder, my father has Parkinson, do out recumbent to proactively start this therapy of B1 vitamin? I live in the US, is there any brand I should select ? thanks and god bless you

Salomon

[jimcaster in reply to salojimenez]

The most commonly used brands which I am aware of come from Vitacost and Solgar. I happen to use the 500 mg tablets from Solgar and I have no problem with them, but some people complain that the Solgar tablets are too big to swallow. Good luck!

[chartist in reply to salojimenez]

salojimenez,

If you click on this link and scroll one fourth of the way down the page, you will see links for other options for B-1 / Thiamine HCL or HCI :

healthunlocked.com/parkinso...

This link also has a ton of information about B-1 / HDT .

Art

[healthabc]

I am 4 yrs in, and a year ago I was emailing with Dr C. I had not started c//l at that time. He advised me that I MUST start c/l with B1 or I would never be well. He said they work synergistically together.

I assume that if I were recently diagnosed, the B1 alone would be effective.

[jimcaster in reply to healthabc]

I think you are right. I was newly diagnosed when Dr. C. and I corresponded. Here's what he told me: "With patients in your condition we always get complete regression of all symptoms, motor and non-motor and stopping the progression of the disease. It is possible that the right dose of thiamine will make them regress completely in a month, if something remains in the future you can add a small dose of levodopa."

[dreilly942]

I am newly diagnosed at 49, I have mild symptoms-finger tremor, muscle pain, fatigue, anxiety, loss of mobility in my hand and foot. I started taking Thiamine (Vitamin B1) HCL about 8 months ago, my symptoms have all significantly improved. I am not on any medication, as the only treat the symptoms and mine are manageable.

[Fergle in reply to dreilly942]

I had the same symptoms and med free - also the same outcome with B1 - feeling much better all round on 1500mg, especially with Apathy and anxiety which totally disappeared, but sadly the B1 upset my stomach so badly I decided to give it a rest and see if my PD symptoms returned and my stomach recovered. My stomach slowly recovered (although not fully) and I had no PD worsening for about 6 months, so I thought I was cured! Then sadly over the next few months the PD symptoms returned - especially the apathy and finger twitching. By chance, while looking into something to help with my stomach, I came across Symprove which is a probiotic drink they claim helps with IBS and it turns out is being seriously looked into to help with PD at Kings in London. This was a no brainer for me to try as I needed to find something to cure my IBS and the bonus being it (may) help with other PD symptoms. This is only a theory and no proper data exists as yet, so look at it yourselves before making any decisions and it's very expensive. I have been trying it for 5 weeks now with mixed results (some good some bad) but one thing is for sure, my twitching fingers have stopped! Totally !! not even a slight twitch, so I am going to continue with the 12 week course to see if it helps with other PD symptoms. For me the shift towards looking into the gut for PD is the correct way forward, as I have always had a bad constitution from childhood and have always struggled with smelly gas. Having read much on the theories of what causes PD, with the advantage of a layman's point of view, my theory is B1 repairs the damaged brain and it could be as simple an unbalanced gut which eventually causes damage to the brain. Could it be that simple.....? I guess not, but most new inventions are so simple they have not been looked into and most academics get bogged down with detail! I live in hope that one day a light bulb moment will happen with this dreadful life robbing disease and is why I follow this HU thread as it gives me hope and while being realistic, allows me to connect with people who are actually experiencing the disease. Thank you to all those who have inspired me to try different things - especially the B1 - it really helped and who knows what will be the next thing....?

[chartist in reply to Fergle]

Fergle,

Thank you for that update on HDT/B-1 and the use of the probiotic Symprove. Please keep us updated on how the probiotic works out over the longer term.

I have a couple of questions regarding the stomach upset with B-1. Did the upset stomach manifest as diarrhea, constipation or some other issue? Did you take the B-1 with or without food?

Thank You!

Art

[Fergle in reply to chartist]

I used to take 1x500mg on an empty stomach first thing in the morning and 1x500 before lunch. It most certainly gave me diarrhoea after a few weeks. My pee smelt very strongly of B1 too so my body was trying very hard to get shot of the B1 any way it could ! My stomach is still not back to normal but I will update on how my 12 week plan goes with the Probiotics. The last few days have seen a noticed improvement in stiffness and I am sleeping much better. Maybe placebo but there's many small changes and if I can get my stomach back to normal then I'm sure it will be even better. When I think of giving up anytime when symptoms are worse than before I took Symprove, look at my fingers and as they are still not moving on their own it gives me hope other improvements will happen !

[tryit in reply to Fergle]

Which Symprove do you use? Its on amazon but prices from 99.00 to 200+. Thanks for any help you care to give.

[Fergle in reply to tryit]

I bought it straight from the company that makes it here in the UK. I think they ship abroad for a small cost. It cost me UK £160. This may help [e-mail] Email them and they will tell you the costs. Good luck

[KERRINGTON]

My PD began 12-14 yrs ago, diagnosed a year ago...I'm on supplements, mucuna, no meds. B 1 works for me much as an aspirin does...quickly. Started 18mos ago 4gm day, now 250 mg to 500 mg daily. It def keeps me upright, walking, and balanced, though I may look shaky at times.

[nkurilskaya]

My husband was diagnosed Parkinson in October 2014. At the beginning there was a low back pain and tremors in the left leg and hand, the stiffness of the muscles on the left, a slight imbalance and frequent going to the toilet at night time. He has refused medicines used to treat Parkinson’s. The disease continued to progress. Tremor arrived in the right hand of such force that he could not hold a spoon or a fork to feed himself, also there was tremor of the jaw. The stiffness of the left side muscles has increased. It became difficult to get up and sit down the chair, turn around. He sleeps in a recliner. Physical exercises help only at the time of their execution, after which the stiffness and tremor return with renewed vigor. During this time, various non-standard methods of treatment have been tried: acupuncture, electrostimulation, small doses of naltrexone, mannitol. No tangible positive changes. He used cbd oil that calms him a little, and magnesium citrate to avoid night cramps. Tremor and stiffness could be temporarely relieved by meditation, but only at the time of the relaxation. In May 2018 I found out about B1 and wrote an e-mail to Dr. Konstantini. On june 2018 my husband started to use B1 how it was recommended by Dr. C.- 2 g at the morning and 2 g. at the lunch time. His condition worsened, especially his rigidity, balance and posture. Dr. C recommended to suspend B1 for 10 days and then to start with 1g at the morning and 1g at the lunch time. The effect was the same. Nothing helped. Then the dose was halved again. His symptoms remain not better. Dr. C recommended starting to take c/l and not be afraid of side effects, because c/l does not give side effects if you take thiamine at the same time. There is Parkinson Institute near us. My husband decided to visit a neurologist. The neurologist prescribed c/l. It was september 2018. The initial doses of c/l caused severe diarrhea. Dr. C told to stop c/l. We did. It took a couple of months to get rid of the effects of diarrhea. Next visit the neurologist prescribed (Neupro) Rotigotine Transdermal Patch instead of c/l. Dr. Constantini was against this medicine, but said, let's see what happens next. Nothing good except ankle edema happened. Neupro was canceled. Then a chiropractor dr. Jim Otis advised taking c/l with a colostrum, which will prevent diarrhea. And this has worked. By the time my husband took c/l 2*25/100 3 times a day and B1 1g at the morning and 1g at the lunch time. Тhe balance and posture improved a lot, he easily gets up from the chair, started walking again, the facial expression changed for the better, can eat by himself when he is not worried. It seems to us that it is large contribution of thiamine in the all positive changes, because while he was getting used to the c/l he did not take thiamine and did not have any positive changes. But it works together with c/l.

Over time, the tremor intensified again and involuntary foot movements appeared. We gradually reduced the dose of c/l 1.5 * 25/100 twice a day. The dose of thiamine left the same. Involuntary leg movements almost disappeared, but the tremor is sometimes very strong.

[Hidden in reply to nkurilskaya]

Thank you for this report

[Parkie-]

Hello RoyProp

I am just curious, are you asking because you are thinking of quitting PD meds to take only B1?

Thank you

[Hidden in reply to Parkie-]

Not quiting.

[PARKINPONS2]

I have beaen diagnosed PD in november 2017 and I follow the classical treatment Modopar 125 (capsules of levopdopa and benserazide) 3 times a day. My neurologiste in Paris is kind of conservative and will probably refuse to prescribe thiamine . However I have bought capsules of vitamin B1 (100mg) and I take 400 mg a day . I understand the treatment of DR Constantini works only with high dosage . Thence two questions

Can anyone living in France and using HiGH Dosage of B1 let me know where he buys the capsules and if he knows a French neurologist prescribing B1.,?

So far I go on with Modopar that is taken in charge by my insurance company but Iam ready to pay the bill if it proves to be efficacious . Thanks a lot . M.C