B1 therapy side effects

[ashok200]

Hi, I am 55 years old male diagnosed with PD about 5 years ago. Started B1 therapy couple of days ago in consultation with my Neurologist. He suggested 100 mg Thiamine oral tablets 3 times a day for 10 days and taper down after 10 days. However severe side effects like feverish, body aches, headache etc. observed after two days, have stopped b1 until checking with doctor, any suggestions or much needed guidance is welcome, thank you

[chartist]

Is it possible that you just happened to catch the flu at that same time? You just described flu symptoms and I have never heard anyone on this forum report flu like symptoms from B1, even at doses way higher than what you are using and I am talking about many years of posts.

You didn't say if you are using thiamine HCI or thiamine mononitrate(TM). Your dose would be quite low for TM and quite high for thiamine HCI.

Art

[ashok200 in reply to chartist]

Thank you very much Chartist for your reply, I am sorry could not describe symptoms correctly, my symptoms match that are described elsewhere in this forum after I went through some posts and not flu. After stopping b1 for two days I am feeling better now.

My doctor has prescribed Thiamine HCL 100 mg tablets to me.

Any suggestions/ guidance on how to go about it now will be much appreciated, thank you

[chartist in reply to ashok200]

Then that would be an indication that the dose was too high. In such a case, Dr Costantini might reduce the dose by as much as half, but this could depend on how long exactly it took your increased symptoms to decline. You may find the following of interest :

healthunlocked.com/cure-par...

This discusses how Dr. Costantini determined proper dosing based on how his patient responded to B1.

Art

[ashok200 in reply to chartist]

This is very useful, thank you so much 🙏

[Cowpatti]

I thought Benfotamine was the most absorbable form of B1

[Dabaa in reply to Cowpatti]

You thought right. Conversely, it can bring on OD symptoms very quickly.

[Manou38]

Je vous conseille la B1 sublingual de "Superior Source" qui est mieux assimilée.

[Dap1948]

What you describe sounds more like Dr Lonsdale’s ‘paradox reaction’, called such because it happens if your body is deficient in B1 and seems to be rejecting the one thing it needs. Elliot Overton also talks of it. I suggest this because of the particular symptoms you describe which are more flu like. If you’d described increased tremor or anxiety or disturbed sleep I would have suggested B1 overdose. Elliot suggests ploughing through, I would suggest to take a break first and then get your body used to B1 on a very, very low dose first. It’s unusual for Parkinson’s people to have B1 deficiency if they take levodopa. I’m impressed that your doctor suggested the therapy. Have you read my book?

[ashok200 in reply to Dap1948]

Thank you so much Dap1948 for responding to my status and giving valuable feedback. I have not been tested for B1 deficiency (probably not a routine test in India), but tested for B12 couple of months back and it was not deficient. Let me describe in more detail the symptoms I noticed on second day I started B1 therapy (100 mg Thiamine HCL 3 times a day)

1. Fatigue and feverish

2. Constipation

3. Body aches, specifically my back, not able to bend forward

4. Neck pain

5. Shooting pain below right year which was not constant but kept on coming again and again

6. Disturbed sleep

7. Anxiety

I did notice some improvement in PD symptoms specially swing of left arm (my PD symptoms are Pre-dominantly in left side) improved gait with less dragging of left foot, improved rigidity and improved movement of left hand in second day and day after, which have reversed since stopping b1 two days back.

I haven’t yet started Levodopa, currently on following medication:

Premipaxole 1.05 mg one in morning

Pacitane 2 mg twice (one in morning and one in afternoon)

Yes I have read your book (got it from amazon), please suggest way forward, shall be grateful to you 🙏

[ashok200 in reply to ashok200]

P.S. My doctor advised me to start Syndopa Plus 125 mg half tablet 3 times a day, but after 2 days reversed to earlier medication due to deterioration of symptoms

[ashok200 in reply to ashok200]

It happened two months back

[Dap1948 in reply to ashok200]

Now you’ve listed more symptoms and mentioned an initial improvement, I think it’s the usual overdose. Keep on the break for 1-2 weeks, then resume B1 100 mg oral on a much lower dose. You were on 300 mg a day. Your very early reaction suggests that the dose was much too high for you. Presumably you have 100 mg tablets? I think I would take 100 mg x5 a week, (leave out two days). In time you can increase the number of days if you’re not seeing improvements. If you see worsening symptoms (signs of overdose) you can reduce the number of doses per week, after a suitable break of course.

Do you belong to our Facebook group? m.facebook.com/groups/parki...

[ashok200 in reply to Dap1948]

Thank you very much, will follow the protocol as suggested, I closed my FB profile long back

[Dap1948 in reply to ashok200]

That’s a shame as there is so much information and support there. We have a website too…

b1parkinsons.org

[Thomasluvshealth in reply to Dap1948]

He Daphne, my mum just discovered you and the great Constantini. I have just read your book over the weekend. My mother has been diagnosed with Parkinson’s syndrome, possible now with Corticobasal Degeneration. It’s been a difficult road. She is in aged care and have asked the doctor to prescribe injections because it’s hard for her to swallow. I started giving her up to 1000mg per day of B1 HCL for over a week and have noticed that she now turns her neck and her right arm has better movement. At this point we’ll try anything. She is on no medication to treat her condition because there is none. Hopefully this helps with with her symptoms.

[Dap1948 in reply to Thomasluvshealth]

I’m pleased to hear that you can see some improvement in your mother’s movements after starting B1. I don’t want to give you a downer but a word of warning…. B1/thiamine is not excreted immediately from our bodies as some people suggest but hangs around for a couple of weeks or even longer. This means that successive doses of B1 are going to increase the levels of B1 in your mother. This MAY mean that, as she has had such an early positive reaction to the B1, she may become overdosed as her levels continue to rise over the next week. It’s just something we have noticed with people seeing early positive reaction. 1,000 mg oral B1 may have been a little high to try as an initial dose. The book suggests 500 mg. Just keep an eye open for worsening symptoms - agitation, increased tremor, disturbed sleep… I emphasise that these worsening symptoms would be temporary and are not dangerous! If you decide to try IM injections I wouldn’t start any higher than 100 mg x2/week and possibly 50 mg might be better. We are noticing much lower doses are achieving good results now. If she finds swallowing difficult, you could also try sublingual. She would need to take the sublingual tablets as per instructions in the book. There are Superior Source microlingual at 100 mg or Barimelts and EZmelts both at 12.5 mg. We have found that if you take these sublingually they work sublingually. I wish your mother well with the therapy.

[Thomasluvshealth in reply to Dap1948]

Thank you

[Karmaone]

I've been taking B1 for about a month, and without a doubt the amount of mental energy I have has increased. I feel sharp again, which is nice. However physically I think things seem to have not changed much. I've noticed that I feel 'flu' like especially in my shoulder and arms, a heavy feeling....However, my wife pointed out that I've been doing more than normal so maybe my muscles are just tired?

Also, I'm not an authority on B1 but the next thing I'm trying is a B1 complex as apparently extra B1 can deplete other B vitamins.

Just my experience....

[Dap1948 in reply to Karmaone]

My book mentions the need of b-complex and magnesium for the B1 therapy to work. I think that your doing more than usual might be a sign of more energy? How long have you been on this dose? And what is this dose?

[Karmaone in reply to Dap1948]

Hi, thanks for the reply, I started the recommended brand of sublingual 100mg 3 times a week 6 weeks ago. My energy felt very up and down so I increased to the sublingual to every day. I felt like I was becoming tired in the afternoons so I added a lunch time 100mg supplement. My energy levels have been pretty consistent but my tremor is still fairly bad. I've been taking 300mg of magnesium glycinate at night for about 6 months. I've just had a b complex delivered. I was going to add that to my night supplement routine tonight....

I'm obviously not very patient....

[Dap1948 in reply to Karmaone]

B1 therapy can improve motor symptoms by 50%-70%. This obviously means that not every symptom will be improved. Make sure that you are watching all your symptoms. Improvements can be very subtle at first. Don’t miss any. And patience is needed I’m afraid.

[estubbs79]

I haven’t gotten any side effects from B1, not sure if it’s making a difference with my PD

[Dap1948 in reply to estubbs79]

What dose are you on? Have you read my book?

[Chockly]

Sadly it didn't agree with me at all - I tried for months and overdosed every time. Even at very low dosage. It took me weeks and weeks to recover. It simply doesn't agree with everyone.I suggest starting with 25mg oral (not SL) a few times a week and build it up. I may give this one last go myself.

Wishing you well.

[ashok200 in reply to Chockly]

Thank you, wishing you well too!

[Caro-1973]

Hi! Taking 1500 mg a Day. No side efects. Sweet Spotify for me. Join Facebook grupo B1 Therapy Daphne

[SandyMae42]

Don't know if this helps, but EONutrition on YouTube has a video called "Managing Side Effects of Thiamine Supplementation: The Paradoxical Reaction" youtube.com/watch?v=-DxvSUE...(Not working as expected?)

[Fava-1]

try eating a variety of nuts daily