B-1 and Fibromyalgia and Chronic Fatigue Syndrome
Was it too good to be true? Or are you having success? Either way, please take the survey!
Two weeks we reported that high-dose B-1 supplementationmight provide a cheap and easy way to improve energy and reduce pain in fibromyalgia and chronic fatigue syndrome (ME/CFS). We based that conclusion on mostly anecdotal reports and some early studies which suggested B-1 supplementation was a viable option. Now we’re checking in to see how people are doing.
I will update the results of the survey regularly…
The High-Dose B-1 Fibromyalgia and Chronic Fatigue Syndrome (ME/CFS) Survey
I am still increasing the dose by 300mgs every 3 days . I am at 900mgs now. Will I get the opportunity to finish this survey when I go up to 1500mgs and stay there for a few weeks please?
Yes…I’m in the same place you are….I just got the B-1 and am slowly ramping up the dosage…
Can you go as high as 1800 of benfotiamine or just regular water soluble thiamine
Good preliminary results – will report more, but either I’m having a remission, or something is going on.
Better: sleep, decision-making, cognitive, ability to work longer – all preliminary and subjective. I’m taking note of changes to long-standing problems (24 years).
Does anyone know if we have to keep taking B1 forever?
According to the Italian group, until the reason your cells are not taking up B-1 is identified and fixed, you would probably have to take it permanently.
Have you continue to use b1 long-term? I believe this comment was from about 6 years ago.
I just saw a doctor saying that yes you will have to continue the thiamine. It is water soluble and it apparently doesn’t stay. Maybe we could go on a lower doze once our muscles and etc get to a better stage.. hope so.
Hi Guys,
I have been doing B complex for a year and a half now. I am not sure what is doing what but am sure that has to be one of the things that is making a difference. I take B1 and Alpha Lipolic Acid in supplement form. I thought too much but Drs, Klimas and Rey said no my body is chewing it up. So, onward and upward and we will finally win!
🙂 Good luck!
Be careful with ALA it can make your blood sugars drop and make you hypoglycaemic especially if your diabetic.
This is an interesting video I found on the Mayo Clinic website. I was shocked by this information and the damage this vitamin deficiency can do and the neurologic damage it can cause. Well worth watching.
http://www.youtube.com/watch?v=BvEizypoyO0
Thanks!
The youtube is about vitamin B12, not B1. Is there similar data for B1?
Thanks Cort,
It’s right at 2 weeks for me and it has really helped.
As I mentioned I’m at 1000mg a day, where I started.
One month ago I was at a low point, the last two weeks have been the best I’ve had in two years.
Here is a short list of my improvements.
1. Eliminated my sickness feeling
2. Calmed my nervous system
3. Eliminated my wired but tired feeling upon waking
4. Elevated my mood and stabilized it.
5. Increased my energy
It’s helped some with pain, not as much as above. I just now got back from going out to a Thai restaurant
with my wife, last sunday I went to church. I’ve done neither for months.
Thanks again
How cool that is! I’m ramping up to 1,000 mgs now…
Congraluations. Best wishes on continued success 🙂
The list of ailments that are associated with fibro sound just like mine, at least this helps to let me know for sure I am not going crazy. Weird stuff.. I just started the b1. Vitamin C can help make collagen to help, tendons, ligaments, for muscle problems. I hope. I have been dealing with this for over 35 years and I have gotten so much worse in the last year. I keep saying… why? Good Luck and blessings to everyone of us.
It’s been 2 weeks for me also. I took 1600mg Sat afternoon and Sun was the best day I’ve had in 2 yrs! I kept on telling my husband how amazed I was that I was still in motion. I’ve been to my office 2x this week, instead of the pajama game at home office. I’m feeling hopeful and happier than I’ve been in a long time and sleeping 7-8 hours at night with only one cruise around the house @ 3-4am. I feel alive! Sure beats the alternative!
Thanks!
How about that – even some sleep improvement. Congratulations and good luck with it 🙂
I’m a couple of weeks in (I think) and have also been going up 300 mg every three days. I’m now at 1500mg. I had maybe a very slight improvement at 1200mg possibly – hard to tell, some other things going on and things fluctuate a bit anyway – but nothing amazing so I’m still going up.
Does anybody know at what point we stop going up if we don’t see anything? I could end up eating my own bodyweight of this, eventually!
That’s a good question. The researchers stopped at 1,800 mgs/ day I believe but I haven’t found any indication of a limit where B-1 becomes toxic….Does anybody know?
LIke the other water soluble vitamins, any excess B-1 that is not being used is excreted by the kidney in the urine. Consequently it is very difficult to get “toxic” levels of any water soluble vitamin in normal people.
This does not mean that there won’t ever be any side effects to high doses or that it won’t ever be harmful, and in PWME they will most likely be more common as we have many issues with metabolism and detoxification.
Don’t take your B-1 with tea or coffee or much of it will be wasted: http://www.nlm.nih.gov/medlineplus/druginfo/natural/965.html#HerbInteractions
Pharmacokinetics of oral B-1:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3293077/
Basic info, plus some on toxicity:
http://www.food.gov.uk/multimedia/pdfs/evm_thiamin.pdf
Thanks MD with ME!
Results so far – 44 people have taken the survey
Four people have shown major improvement – all were taking high doses of the high dose B-1; 1-1,000 mgs; 1 at 1,500 mgs and 2 at 1,800 mgs). Nobody has shown major improvement at below 1,000 mgs a day. Thus far 7, 9 and 4 people have tried from 1,200, 1,500 and 1,800 mgs/day…
major improvement /somewhat better /no change /somewhat worse health much worse health /Total Responses
300 mgs/day 0 (0%) 2 (18%) 8 (73%) 1 (9%) 0 (0%) 11
500 mgs/day 0 (0%) 7 (39%) 10 (56%) 1 (6%) 0 (0%) 18
600 mgs/day 0 (0%) 4 (27%) 10 (67%) 1 (7%) 0 (0%) 15
900 mgs/day 0 (0%) 2 (25%) 6 (75%) 0 (0%) 0 (0%) 8
1,000 mgs/day 1 (7%) 3 (21%) 8 (57%) 2 (14%) 0 (0%) 14
1,200 mgs/day 0 (0%) 2 (29%) 3 (43%) 2 (29%) 0 (0%) 7
1,500 mgs/day 1 (11%) 0 (0%) 6 (67%) 2 (22%) 0 (0%) 9
1,800 mgs/day 2 (50%) 0 (0%) 1 (25%) 1 (25%) 0 (0%) 4
>1,800 mgs/day 0 (0%) 0 (0%) 1 (50%) 1 (50%) 0 (0%) 2
Thanks, Cort – extremely interesting survey and it’s also interesting to see how many of us have piled on to try this out!
Is anyone taking benfotiamine rather than high strength B1?
Yes, that’s the kind I’m on. Since it is fat soluble and not water soluble – I don’t take it daily. And since I’m on a diet that is high in B-1, I don’t feel that I need to ramp up my dose. When I tried taking more of it – it was too stimulating to my sympathetic system. So, had to drop back down.
For the person that ordered both kinds – are you taking them both at the same time? Seems like that may be a little too much.
Issie
Hi Marco 🙂
While I was waiting for regular B1 to arrive I got up to 600mg benfotiamine a day and after a few days at that level I felt a bit “toxic”.
I’m at 1800 mg per day now – made up of 1500 mg regular B1 and 300 mg benfotiamine.
I’ve noticed improvements in energy, feel more relaxed overall, and I have significantly reduced pain in calf muscles.
I am taking benfotiamine the synthetic form of vitamin B-1 from swanson vitamins. I got up to 1200 mg and noticed a little less pain. My fatigue levels are the same. I do feel a little more settled. I’m not as OCD, not that I am truly OCD but I feel like it sometimes.
I started at 1500 mg today and feel the same but it may kick in tomorrow. I will take the survey when I know more.
BTW, I have Dr. Antonio Costantini’s email address and he has emailed me back and wishes to talk to my Doctor. He said he is going to be publishing a paper soon on Hashimoto’s which I have. He’s one of the Italian docs who did the study for vitamin B-1 and Fibromyalgia.
http://www.cortjohnson.org you can email me if you would like to have his email address. I won’t be publicly giving it out here.
Have you tried or found anyone else that has tried this form?
I was wondering about that. I will do more research..
Has anyone tried alltithiamine or benfotiamine or is everyone using the regular B1 hcl form?
Marco says:
July 20, 2013 at 6:26 am
Is anyone taking benfotiamine rather than high strength B1?
Hi Marco, someone had mentioned that benfotiamine is fat based and may not run through your body the way that the water based B-1 does. I would probably ask a doctor before taking high doses of benfotiamine.
Hi Lynn
As I understand it benfotiamine is much more readily absorbed, retained and leads to higher serum thiamine levels that thiamine with claimed better therapeutic action on peripheral problems such as neuropathies cardiovascular and small vascular problems. Presumably recommended dosages are adjusted accordingly.
So benfotiamine would be a good choice if problems (e.g. pain) were arising from peripheral problems such as neuropathy or small blood vessel ischemia.
But there is some debate whether or not benfotiamine has any affect on the central nervous system as some studies show administration results in high thiamine levels in serum but not in the brain.
Which is a pity as thiamine may be a promising therapy for cognitive decline associated with dementia. Other forms of thiamine ( disulfide allithiamines) seem to more readily reach the brain.
Which all makes it a little confusing as to which would be the ‘best’ type to try.
I am taking 1500 mg. of B-1 (for the past 7 days). I believe I am doing very well on it. My husband and I are hosting six of our grandchildren (ages 4 to 14) for the past week. We do it every year but I have been significantly more active this year than any other. I also think sensitivities to light, sound and smell have reduced on the B-1. I am still suffering PEM but I think that too may have reduced in the past couple of days.
The children leave tomorrow. It will be interesting to see what happens when I go back to my normal lifestyle. I am still very hopeful. I will take the survey after I see what happens next week.
Lynn
I actually had to lower my dose from 1200 mg back to 900 mg, where I feel much better. 1200 mg increased my general ME-symptoms. Horrible! Tachycardia is driving my ME, and too high dose had a bad impact on my heart. 900 mg on the contrary gives me a calm heart, better sleep, less pain amongst other things. Today is my first day back on 900 mg and I’m looking forward to continue on this dose, hoping for further improvements.
With my experience in mind I will remind everybody not to rush this. Take it slow, don’t go too high too fast. And be ware that the different thiamine supplements might have different impact on the same body. I have chosen to have my GP write a thiamine prescription, and he also recommended magnesium supplements. Maybe the thiamine I take is more «potent» than over-the-counter thiamine supplements. I don’t know, but 1200 mg was definitely too high for me.
Thanks for the warning…I had a similar experience on another supplement…I had to pull back and now have started again at a lower pace…and am doing pretty well now. I’m taking it slow with B-1….
It is usually recommended to take B vitamins together in a B Complex….does anyone know what effect taking high B1 alone will have? Will it create an imbalance with the other B vitamins? How long was the original research study?
OM says:
July 20, 2013 at 4:12 pm
“It is usually recommended to take B vitamins together in a B Complex….does anyone know what effect taking high B1 alone will have? Will it create an imbalance with the other B vitamins? How long was the original research study?”
I am also concerned about that. I think this is helping me. If it is still working after a month I am going to go to see a Naturopath to se of they can balance the B vitamns for me.
Lynn
I took 500 mg the first day, 1000 the second, 1500 for 3 days, 2000 for a day and then gave up because I felt no change, neither improvement nor worsening of my symptoms. I am wondering if I should have stayed on it longer. Do people see improvement immediately on a high dose or does it take several days?
I thought I read somewhere that it takes about 48 hours for the B1 to work its way to where it’s going, hence the stepwise build-up – 300mg every three days. Someone correct me if I’m misremembering!
yes, but I didn’t fully respond for 4 to 5 days, although there where signs of improvement on the 3rd morning, also keep in mind the Italian doctors stated no one responded at a lower than 600mg, and no one needed above 1800mg.
I started at 1000 and have not needed to adjust the amount.
we certainly are a diverse group, and I can only speak for myself.
but thiamin has made this illness much, much easier to bare.
Hi Guys, This is pretty exciting stuff 🙂 I have been using benfotiamine on myself and my mum, and will be ordering plain old B1 today. We have felt a slight improvement on mood and pain (FMS). Does anyone have a suggestion about how to titrate up? What has worked for others?
My 12 year old son has had his best week in months with the addition of Thiamine. He isn’t convinced that the thiamine is the cause of his improvement, but the timing is a little uncanny. Will see how he continues and maybe try stopping it in a few weeks to see if he regresses.
On the subject of supplements, I have found little information on iodine and its relevant or otherwise to CFS (apart from Dr Brownstein et al – but I was looking for some more science). However, it clearly has an important role to play in the immune system and in New Zealand (where we live) the Ministry of Health suggests that the population have low levels:
“Recent evidence from a number of studies has indicated that the iodine status of New Zealanders is now declining to the point where intervention is again required to ensure that iodine deficiency disorders do not once again widely affect the New Zealand population.”
Any thoughts, studies or sources of knowledge that anyone could refer me to?
Thanks,
Maury
I’m a little late to this subject, but on the matter of low iodine levels and impact on fatigue, please beware of messing with iodine levels if you have Hashimoto’s. I increased my iodine levels three years ago per the recommendation of a nurse practitioner who specialized in bioidentical hormones and adrenal fatigue. Unfortunately, my TSH levels began climbing, which indicated my thyroid was getting out of whack. I thought if iodine was needed for the thyroid and my thyroid was not working right, more iodine was needed, so I added another pill (2 in total). For a year my TSH levels were extremely high and my doctor and I didn’t know why. I literally slept for one full year until I read an article on Hashimoto’s that said the thyroid is very sensitive to iodine, both high and low levels, and not to take it as a supplement. i stopped taking it immediately, and my TSH levels began stabilizing immediately. Just a warning.
I was doing well the SECOND day but then severe drowsiness occurred at same 500 dose that caused improvement……………..Have been totally debilitated for 30 years and never felt like I did the second day……..PLEASE offer your advice from those who may have experienced this……………won’t give up though because of that AMAZING day………….
Again….please help……
GMH
I was doing well the SECOND day but then severe drowsiness occurred at same 500 dose that caused improvement……………..Have been totally debilitated for 30 years and never felt like I did the second day……..PLEASE offer your advice from those who may have experienced this……………won’t give up though because of that AMAZING day…………. Again….please help…… GMH
Wow GH…That’s pretty exciting…I say pull back on your dose and do it intermittently to give your body time to figure out what to do with the drug. Also you might try benfotiamine (????)…..
I having a similar reaction to something else; a very good initial reaction followed by problems…cutting back seems to be helping..
Good luck!
I don’t think the drowsiness is necessarily a bad thing.
I have come to believe that the calm peaceful feeling and energy increase I’ve experienced may be related to the effect thiamin has on both muscle tissue and the nervous system. Some of the supporting information Cort included
in the original article pointed to it’s relaxing of muscles and also the calming of the nervous system. That may be the reason for the increased energy.
You can get 100mg tabs, I purchased some in case I needed to fine tune my dose.
good luck
Fibro has been a part of my life for a long time. I started b1 and built up to 1500 mg. Have developed neuropathy in my foot during the night before I started the b1. That has become worse in the last 4 nights. Also bad pain in my arm that I’ve not had before… Swollen painful glands at the back of neck! So I’m reducing back to 750mg to see if things change.
This is from Alan
I am VERY Tired,Now;BUT I Have spent a Kings Ransome since I got Ill with CFS/ME/FMA in 1986. I Have Travelled All over Britain Trying to get Either a cure Or a partial cure. I Have just read (on the other page), that Vit B1,in massive doses, from 600mg – 1,500mg Daily will Restore My (Or your ?) energy level………
..
– I have Just given a blood sample,today,at my GP’s And I will go & discuss the Results with him in 4 days time. I will ask him to give me Vit B1 (Thiamine), on the NHS. If he dosn’t I will buy some,Myself and take them anyway. I will Prob start at 800mg’s daily,for a week,then up the dose to 1,000mg’s daily,for another week,then up again (If nescessary), then go to 1,200mg’s for a week, then 1400mg’s for another week,then 1,600mg’s per day,for prob Another month,If Nescessary (IF they havn’t worked,till I give them up at this point………..)
I HOPE they work fairly soon,asap……….. 🙂
I started taking Vitamin B1 the Saturday after your post. I noticed change a couple of hours after the first dose of 300mg. I ended up taking 600 mg that day. The next day my gait, which has been spastic for nearly 8 years, became normal. My orthostatic intolerance had gone, and “the wired but tired” feeling had gone too.
Before starting on B1 I was only able to take about 1500 – 1700 steps a day. I crashed if I tried pushing to 2000. On 900mg a day was able to take 4,000 steps a day. I’ve been on 1200mg for 2 weeks now and I am able to walk 13,000 steps a day without any pay back. I’ve also been able to do some gardening and been swimming twice. I have seen a major improvement in my health and haven’t felt so well for years.
A couple of times thought I was about to crash. but these have been times when I’ve done too much in a short period of time. I did have a upset stomach and indigestion when I went to 1200mg, but it went after a couple of days.
I am very optimistic about how well B1 has worked for me. My many symptoms seemed to have disappeared and I feel more healthy everyday.
My only caution is I have had short periods of near normality in the past and then crashed badly. But I have to say this good period has a different quality to it. Before when I’ve had good periods symptoms like upper body myoclonus and some orthpstatic intolerance persisted although they lessened, and there was always the feeling that ME/CFS was lurking below the surface. This doesn’t seem to be the case this time.
I should say that I developed type 2 diabetes 4 years into my illness and B1 deficiency has been noted in Diabetes. http://www.youtube.com/watch?v=UNRaFjdeuZk The extra activity I’ve been able to do has also had a positive effect on my diabetes. My blood sugar levels have gone from averaging 11mmol/L to now being around the 6.9mmol/L mark. i’ve also lost 51bs in weight!
I can’t help but wonder if my problem has been a functional B1 deficiency all along and not ME/CFS. Without a test for ME/CFS, I’m sure there are many of us who have been misdiagnosed. As for whether my dramatic improvement lasts – time will tell.
51 lbs! blood sugar down….gait normal…activity way up! So great to hear Paul….That’s just fantastic…Best wishes on your continued success…
Oops! that should have read 5lb not 51 lb.
Just thought I’d let you know that I relapsed after 4 and a half weeks. It may be that I other did things, or it may be that the remission had nothing to do with B1 and was coincidental as I do get spontaneous remissions once or twice a year usually lasting a few days to a couple of weeks. it’s hard to know.
I’m back to only managing to take 1500 -1700 steps a day and all of my symptoms have returned. i continued with the high dose B1 for a week or so after the relapse but it made no difference. I’m now only taking 500mg a day. I may give it another go in a couple of weeks time.
Paul
Wow – some encouraging experiences with thiamine so far 🙂 I am at the 4th day and the last two nights I experienced insomnia – dosage was 500mg and 600 mg. Anyone else having insomnia? Did it disappear after a few days? I lowered the dose to 200 mg today, but following the study the beneficial effects only start with 600 mg…
Good luck with it everyone!
I use benfotiamine (helps with neuropathy and endothelial dysfunction) and I can only use it a couple times a week. It appears to build up with me. (But, I do have issues with my liver.) Theoretically, if it is fat soluble it should hang around longer than a water soluble form. And since it is fat soluble – it may take less to get the same benefits. There are some ideas that it might also cross the blood brain barrier better. (Debate on that one – but, did find a paper to support that it does.)
http://www.ncbi.nlm.nih.gov/pubmed/9638312
It will ramp my sympathetic system up too much to take more than 250 mg. at one time and instead of giving me a calming response – it gives energy and a bit of a nervousness. I paradox a lot of the time with concentrated supplements and medicines.
However, since I’m a whole foods, low-fat, vegan there is a lot of B-1 in my diet on a daily basis. My diet is high in beans and green tea. I think that if we can get our vitamins in our foods our bodies may assimilate and use them better. I used to feel that the more supplements you could take, the healthier you would be. Now, I’ve done nearly a 180 – I think you should strive for food to be your medicine. Then add in what may not be supplied with supplements. I used to be religious about daily taking my supplements and now feel that I only need them a couple times a week.
Issie
I had a chance to watch this YouTube video on B12 http://www.youtube.com/watch?v=BvEizypoyO0
I would suggest that everyone watch this. I have had fibromyalgia since the ’80s and still struggle with it.
You can find a link to the survey results (dating to July 25th) at the bottom of the blog.
Great, thanks!
It is so helpful to read everyone’s experience. I would like to know what brand vitamin people are using. Some brands are more effective than others and that might factor into everyone’s responses. I just received my Solgar brand 500mg to try.
Hi guys
.. I started on the “Source Natural ” brand yesterday ..took 500 mg. I ‘ll take 500
again today and build up,slowly to 1500 if my body can tolerate it every 3-4 days. I’m pretty sensitive to any new meds and supplements , the binders and those pesky inactive ingredients.
QUESTION. What’s the difference between the B1 TPP and HCI???Most brands are HCI – Source Natural is TPP.
Since I’ve never been able to tolerate any B’s that well in any form (25 yrs!), I can’t wait to see if Thiamine will work for me!!
ALSO, ON ANOTHER IMPORTANT TOPIC.. THE ALIGN PROBIOTIC is available in CVS AND WALGREENS !! I had ordered it through Amazon. BTW..Cort..through the “HR Amazon store…”and then did see it in CVS and Walgreens.
Yah baby – through the HR Amazon store. Love that!
Anybody have an answer regarding TPP and HCL? I have no idea…
Hi, Cort –
Thanks for doing the survey.
I took the survey a week ago or so, and I’m now taking 1750 mg., and will go up to three days of 2000 mg. tomorrow.
I don’t get much effect unless I take 1500 in the morning all together; I’m hoping a second 500 mg. dose at lunchtime will lengthen the effect. 250 as the second dose is too subtle for me to say how it’s working. But I’m definitely not quitting now.
I also had several really good days – and overdid it.
I think I’m going to be very careful to use all my regular pacing and other CFS management tricks, and write first thing (I’m a writer – and trying to finish a novel with three main characters, one of whom has CFS): I think the rush it gave me to just do whatever I wanted without having to struggle so hard tempted me over the energy line.
One dramatic change has been to reduce the number of naps I had to take to function to zero or just one to get through the day, from 3-5.
How do I indicate on the survey that I’m taking it a second time? I’d like to post periodically – good or bad – as long as I’m trying the B1.
I’ve always said 20% improvement would be a huge gift – and now I have at least that. If I can maintain that, I will be happy. If I can better that, I’d be ecstatic (carefully – too much adrenaline).
Thanks.
Alicia
I gotcha…its hard to figure in the overdoing it and all….I have that same problem..but I’m glad you got that rush…Its hard to pull back in the face fo that. 🙂 That’s quite a change in nap rate!
Twenty percent is superb…isn’t 20% superb?…I love 20%….that’s a huge difference.
I think I’ll have to do the survey again….I’m not sure if it will allow people to do it again…If it does then post in the comments section at the bottom…(I think there’s a comments section there :))
It ate my long comment!
The one time I didn’t take a copy (Murphy’s law).
How do I take the survey a second time so you don’t think it’s a different person. Thanks.
Alicia
Hate to hear that…The answer to the question is…..I don’t if it will allow you to add something later. I’ll have to look…
It ate my long post (see above).
How do I tell the survey I’m not a new person? I took it once before.
Thanks.
Apparently (see 3:11 pm above) it did not wipe out the post – it just didn’t follow. Phew.
I ALWAYS (well, except this time) select my comment and copy it BEFORE posting it, because if the internet eats it I have no recourse.
Maybe you could do a survey later on those who have reached a dose they feel works for them – and plan to stay on it +/-. And then maybe a survey a few months after that.
Anecdotal data is still data – and true double-blind randomized trials – if they every occur for something with no commercial potential – are a long way away.
Meanwhile, I’ll settle for the 20%, and see if I can get better. I have a novel to finish!
Alicia
Hi Cort,
l am trying 900mg today. Yesterday l had a good morning after a good sleep, l felt calmer, relaxed and less stress, but in the afternoon l took a B5 & a B6 and relapsed and brain felt very prickly and l became very irritated. So l think l took a high dose instead of trying a smaller dose as l have had big problems with taking B’s in the past. At least l am able to take 1200mcg of vitamin B12. l find that l am able to tolerate sulphur foods better and a psoriasis sore on my leg is starting to heal.
Anyway l still felt this morning not right so l took 200mg in the morning and then 500mg at lunch and l started to come right before l would not even contemplate writing this, or reading or even watching t.v. So It is having a good effect because to have that quick turn around is amazing! l think l will stay at 900mg for another 3 days and maybe go up to 1000mg. Will be going along to Doctors to put all this them, will see what happens. 🙂
Oh Dear,
l did relapse more after yesterday! Over did the enthusiasm a bit. Felt prickly again today and felt like my energy draining away again. So l think l will skip the B 12 tomorrow and try again because when l started, l did not take any B12 and felt very relaxed. So l had to write this to let others know. l am not giving up at all, just doing it again. l will reintroduce B12 again when l feel it right to do so and l m not trying any other B’s. Hopeful 🙂
I started taking B1 about a week ago. Could only get 100mg tablets so started there.
I have had so many adverse effects from other supps that I have decided to go very slowly so 50mg (half tablet) first day and only just increased up to 300 mg.
From about 150 mg upwards my pain has increased and so has my fatigue. I have also had stomach ache. I cannot decide if this is due to B1 or other factors.
Anyone else found they have had more adverse or positive effects since taking B1 ? or should I persist with 300mg and see what happens ?
(I have had M.E. for 40 years and was diagnosed with fibro last year although probably had that too for at least 15 years)
B-1 has definitely helped my energy. It also appears to have disrupted my bowels a bit; no pain but not very good bowel movements 🙂
This is from someone who had problems getting it on the site
Hi Guys, This is pretty exciting stuff 🙂 I have been using benfotiamine on myself and my mum, and will be ordering plain old B1 today. We have felt a slight improvement on mood and pain (FMS). Does anyone have a suggestion about how to titrate up? What has worked for others?
Coralie 🙂
Since I read the first article about its benefits I rushed out to the store and got whatever b-1 I could find only thing they had was 100mg per tablet.
I started taking 100mg 3x per day and I must say… way to much of a coincidence to be anything else…
I have been sick since october 2010 at 21 years old , I was hyperactive growing up could never sit down and read the book at the beach etc… after cfs I was a vegetable… gradually got better been followed by klimas and rey since august 2011 we are now august 2013. My theory has always been that I got so much better at reducing stress and facilitating my every day activities that one might think I was going torwards better health… Ive never felt any of the antivirals or immunomodulators did much help… regardless of what I did the crashes always have happened which then brought psychological pain as well as physical.
funny thing since taking b-1 everything is just so much better… I crashed maybe 3 small times since taking b-1 but I always crash… these have just been much smoother… acceptable , it’s a good excuse to watch a movie etc… when I have a good day now since last 3 weeks all my symptoms are just reduced… yeah I still get bloating , a bit of dizziness but I actually wake up now and get literraly 50% less of the blood drop… my first cfs year I used to wake up and feel like my head was an empty ballon and then blood rush there and actually almost pass out… in the last 3 years I just kind of began accepting it… since starting b-1 I realized it almost doesnt bother me anymore… anyway long story short , it’s an amazing little supplement and althought I cannot prove causality , there is def a very strong correlation between my improvement and b-1
I have no influence over cfs doctors and not for lack of trying but if someone in the forum has any real influence we should really look deeply into b-1… also I see you guys are all doing great on much higher doses… I am thinking whether I try it or not… I am doing good at 300mg per day… do not want to jinx it… I read higher dosage wont affect me as the xtras will be flushed out…
I have donated a bit of $ to phoenixrising in the past. I can only assume you lost control of it (cort) and did another fresh one…
thank you very much Cort. always keeping us updated. Your website has been my second best thing for cfs after actual hope from doctors such as klimas/rey & chia etc…
cfs just wouldnt of been the same without your website thank you again Mr. Johnson!
so hopefully b-1 can help everyone in some way , I will spread the word on my end and refer people to come read this thread.
ciao!
Great to hear Alex!
I would stay at the dose that’s working for a good while, let your body get settled in and then maybe inch it up…
I think with these good reports maybe somebody will. This might be up the Open Medicine Institute’s alley actually…They are best situated to so small, inexpensive trials.
Yes, I did lose control of PR – that’s why this site appeared..:)
Thanks! Continued good luck to you Alex 🙂
Posted non another forum :
High dose thiamine improves fatigue in multiple sclerosis.
https://www.ncbi.nlm.nih.gov/pubmed/23861280
“The absence of apparent decrease in blood thiamine despite the presence of symptoms referable to a mild thiamine deficiency suggests that these patients may have a dysfunction of the mechanisms of intracellular transport or structural enzymatic abnormalities.”
About two weeks ago I started B1 — 500mg Source Naturale for 3 days, and then went to 1000mg. Cramps. Returned to 500mg for a few more days and then ramped up again to 1000mg. Diarrhea. The Source Naturale also contains 100mg magnesium and I wonder if that’s the culprit, since no one else is complaining of stomach problems (except maybe Cort — who, I think, is also taking Source Naturale). I weigh 115lbs — maybe I need a lower dose, or maybe I need to find B1 without magnesium?
Thanks, Cort, for all this information.
Carol
Being impatient, I started at 1000 mg of Source Natural for a few days and then increased to 1500. Definitely had loose bowels, gas and ab discomfort. Have stopped the B1 and system has returned to normal. I did not notice any improvement while taking the B1. Carol’s theory re the magnesium may be valid.
Thanks Cort for all you do.
Arlyn
Update on progress.
I love B-1 from GNC. It is only B-1 with no other additives. I am taking 1500 mg. and doing very well. My husband thinks I am getting my vocabulary back. I definitely have more energy, but still feel PEM, so I have to watch out how much I am doing. Maybe that will get better too with time.
Things I have noticed.
-A general lightness about my body.
-I think and communicate better.
-I have less smell, hearing, and taste sensitivities.
I can drive better.
When doing a paltry amount of exercise on a recumbent bike, it is much more difficult to get my heart rate up to 100. Before B-1 it took very minor pedaling to achieve that. I’m not sure how I feel about that because i feel worn out after just 15 minutes.
I dream of playing tennis and am contemplating signing up for some dancing lessons with my husband (a groupon, so very cheap, even if I can’t really do it).
All in all, this is the most hopeful I have been in a long time.
There is one downside so far. I feel a bit manic. Like my brain is in overdrive. I am hoping I can do something that will slow things down for me. I am open to ideas if anyone has any.
Lynn
I’ve been taking Benfotiamine as it appeared to be more bioavailable than B1, though it is more expensive (but cheap compared to a lot of the stuff I have had over the last 7 years) I think I’ve had ME for most of my life on and off with huge periods in between being perfectly fit andhealthy. For the last 7 years tho I have had no remission at all. So I started on 300mg benfotiamine on 22 July, upped to 600 on 25th and for the next few days actually managed to get to sleep straightaway without sleeping pills – minor miracle, though I didn’t start to feel any better until I went to 900mg when sleep reverted to previous poor effort. I then had the best week I’ve had for a long time, was then upped to 1200 and still felt good-when I say good I mean I didn’t wake feeling as ill as I did, energy was still low but slightly better than pre B1.. I then upped to 1500 and decided to stay on this for a week – I just went more and more downhill so came off that and reverted to 600. Immediately I started to feel better again but sleep is still rubbish – will keep on trying! Thanks Cort
Pam
Sound like some real possibilities are there. I hope you can find a dose that works. Good luck!
BTW the it is Doctors Best Benfotiamine that I am taking. Other consituents are modified cellulose (vegetarian capsule), cellulose and silicon dioxide. So no Magnesium Stearate or other fillers.:)
I’ve been taking B1 for about a month now. The right dose for me turned out to be 300 mgs a day. I felt okay on 600 mg, but bad on 900 mg. When I overdosed, the pills began to taste bitter to me!
Anyway, I don’t feel more energy but I am getting thinner in a way that feels healthy. I think the B1 must support thyroid gland function in some way. It feels like my thyroid is working better.
wow. great to read all this. any updates any one? this is really important stuff. — rivka
Hi – a survey update would be great. If you are having technical issues I might be able to help think them through with you. You can email me privately for my phone # if you’re interested. Thanks for all the wonderful information you gather for us.
RESEARCH LITERATURE RECOMMENDS THAT B VITAMINS BE TAKEN IN SUBLINGUAL FORM (SL), under the tongue, until it dissolves directly into your bloodstream. Studies have proven that individuals especially as they age and those with immune dysfunctions do NOT ABSORB B VITAMINS VERY WELL THRU THE GUT (INTESTINES).
BELOW COPIED FROM AMERICAN CANCER ASSOCIATION WEBSITE 1/18/2014: How can we help you?
800-227-2345
Other common name(s): B vitamins; vitamins B1, B2, B3, B5, B6, B7, B9, and B12
Scientific/medical name(s): thiamin (B1), riboflavin (B2), niacin (B3, also called nicotinamide or nicotinic acid amide), pantothenic acid (B5), pyridoxine (B6), biotin (B7), folic acid or folate (B9), cobalamin (B12)
Description
B vitamins are essential for growth, development, and a variety of other bodily functions. They play a major role in the activities of enzymes, proteins that regulate chemical reactions in the body, which are important in turning food into energy and other needed substances. B vitamins are found in plant and animal food sources.
Overview
B vitamins are an important part of the diet and are needed to help avoid many health problems. But, there is not enough scientific evidence to know whether B vitamins can reduce the risk of cancer.
People with low folate intake are at increased risk for certain types of cancer. A diet rich in vegetables and enriched grain products containing this vitamin are recommended by some experts in cancer prevention. (See our separate document, Folic Acid, for more information.) Grain products have been enriched with folic acid for more than a decade, and there is now some concern that folic acid supplements may increase the risk of certain cancers. Supplements are not generally advised except in women of childbearing age and people with restricted food intake.
Available scientific evidence does not support claims that any B vitamin is an effective treatment for people who already have cancer.
How is it promoted for use?
Scientists know that B vitamins are part of many important bodily functions:
Vitamin B1 (thiamin) and vitamin B2 (riboflavin) help the body produce energy and affect enzymes that influence the muscles, nerves, and heart.
Vitamin B3 (niacin) has a role in energy production in cells and helps keep the skin, nervous system, and digestive system healthy.
Vitamin B5 (pantothenic acid) influences normal growth and development.
Vitamin B6 (pyridoxine) helps the body break down protein and helps maintain the health of red blood cells, the nervous system, and parts of the immune system.
Vitamin B7 (biotin) helps break down protein and carbohydrates and helps the body make hormones.
Vitamin B9 (folic acid or folate) helps the cells in the body make and maintain DNA and is important in producing red blood cells.
Vitamin B12 (cobalamin) plays a role in the body’s growth and development. It also has a part in producing blood cells, nervous system function, and how the body uses folic acid and carbohydrates.
Deficiency of certain B vitamins can cause anemia, tiredness, loss of appetite, abdominal pain, depression, numbness and tingling in the arms and legs, muscle cramps, respiratory infections, hair loss, eczema, poor growth in children, and birth defects.
Some alternative medical practitioners claim that deficiencies in B vitamins weaken the immune system and make the body vulnerable to cancer. They recommend high doses of B vitamins as treatments for people with cancer. Many researchers are studying the relationships between vitamin intake and risk of developing certain cancers.
What does it involve?
Nutritionists maintain that a balanced diet that includes 5 daily servings of fruits and vegetables, as well as grains, gives most people with all the B vitamins they need. Only small amounts of these vitamins are needed to reach the recommended dietary intakes. But many people do not eat enough fruits, vegetables, or other healthy foods to get the recommended amounts. And people don’t absorb vitamin B12 as well when they get older. That is why the US Dietary Guidelines recommend that adults over the age of 50 take B12 vitamin supplements, or eat foods enriched with these vitamins, in order to prevent deficiency.
Women who are pregnant or breast-feeding need more folic acid than others. The US Dietary Guidelines recommend that women who can become pregnant should consume at least 400 micrograms of folic acid daily through dietary supplements and fortified foods, in addition to a diet containing folate-rich foods, to help prevent certain birth defects in their children.
Food sources of B vitamins:
B1 and B2 are found in cereals, whole grains, and enriched refined grains. B1 is also found in potatoes, pork, seafood, liver, and kidney beans. B2 is found in enriched bread, dairy products, liver, and green leafy vegetables.
B3 is found in liver, fish, chicken, lean red meat, nuts, whole grains, dried beans, and enriched refined grains.
B5 is found in almost all foods.
B6 is found in fish, liver, pork, chicken, potatoes, wheat germ, bananas, and dried beans.
B7 is made by intestinal bacteria and is also in peanuts, liver, egg yolks, bananas, mushrooms, watermelon, and grapefruit.
B9 is in green leafy vegetables, liver, citrus fruits, mushrooms, nuts, peas, dried beans, and wheat bread.
B12 is found in eggs, meat, poultry, shellfish, milk, and milk products.
Thiamin, riboflavin, and niacin (B1, B2, and B3) have been added to white flour and other refined grains since the 1940s to replace some of the nutrients that are removed with refining. Grain products have had folate added since 1998.
Supplements that contain several B vitamins, usually in combination with other nutrients, are sold in grocery stores, health food stores, and over the Internet in pill and liquid forms. Dosages vary by manufacturer.
(submitted by marcie myers with personal comment re: sublingual form. Rest of article taken from ACA 1/17/14)
A new interesting discovery, about B9 (folic acid) and B2 (riboflavin)…
Researchers discover how the body uses vitamin B to recognise bacterial infection (12.10.11)
http://newsroom.melbourne.edu/news/n-930
“An Australian research team has discovered how specialised immune cells recognise products of vitamin B synthesis that are unique to bacteria and yeast, triggering the body to fight infection.
“Monash University’s Professor Jamie Rossjohn said the findings had major implications for understanding the interplay between gut bacteria and the immune system.”
Any update from people who initially did well on this?
I had painful non-ulcer dyspepsia,poor concentration , allodynia and back pain for 15 years.My doctor prescribed perphenazine 2mg bid plus amitriptyline 10 mg per day,after 3 weeks 80% improvement except for back pain.Then I take vitamin B1 300 mg daily for back pain .after 3 weeks back pain disappeared completely .Vitamin B1 had no effect on other pains.
300mg thiamine and 300mg riboflavin seemed to make a big difference in my fatigue level for 2 weeks before my Lyme or ? flared again. I’m still experimenting with supplements for Lyme so no way of knowing how I’ll feel after the flare settles down but it sure was nice to have energy for 2 weeks!
Does anyone use B1 injections IM or IV?
My bowels are very sensitive and too painfull, that I had to stop the B1 tablets. Not sure if they are the cause, the symptoms fluctuate all the time.
I decided to go for injections just to be sure, 100mg. Any one know the dose for that?
I have Parkinsons and am trying to educate myself and self medicate as I found Dr. CONSTANTINI on the Internet. Can anyone tell me how to contact Dr. Constantini’s team for advice on dosages for Benfotiamine versus b1 as I realise I have been taking too little for it to have much effect.
Hi dear Sandra,
Dr. Constantini passed away recently, but you can find a LOT of information about B1 therapy on the website http://www.hormonesmatter.com with Dr. Derrick Lonsdale, who has been using high dose thiamine to treat ANS, fatigue, dysautonomia, (I believe Parkinson’s…not sure though), etc for decades. He is retired, but there is still a lot of good information on the site. I’ll also be interviewing him (today, in fact!). Also information in the FB groups Understanding Mitochondrial Nutrients and Thiamine Deficiency.
I do suggest working with a functional medicine doctor who can help you balance your other micronutrients when you’re using high doses of benfotiamine and/or lipothiamine (or regular thiamine). Therapeutic levels of thiamine can whack out other micronutrients (magnesium, potassium, other b vitamins).
Cort, We should try higher doses of thiamine, not benfotiamine???????
I would really like to hear feedback from those who started this in 2013. Are you still taking it and are you still feeling better?
I was going to post about B1 as I’ve slacked off taking it. But got the bottle in front of me and will start up again.
Suffering from CFS for some years, magnesium + potassium got my energy levels up a bit and yesterday I took B1, 1500mg of the classic HCL version (thiamin chloride).. In 5 years my libido came back slightly! When I woke up I was horrible, tho, felt like I could never leave the bed.. But I did, took a cold shower and geez.. My breathing was excellent, along with my hearing!! Energy levels are higher than usual, but no extraordinary. I’m still worried about the paradox syndrome I’ve heard about.. That it gets worse before getting better. Let’s see! This B1 thing seems to be working for lots of people and for me as well. Time will tell! I’m sharing my journey since 2016 on insta @opedromagico
Wow…Good luck with that libido! 🙂
Hello Cort,
I think I can explain why high dosage of B1 works and that some people need extremely high doses – Hydrogen Sulfite SIBO.
Elliot Overton has written here https://www.eonutrition.co.uk/post/got-sibo-here-s-why-you-need-to-get-your-thiamine-status-checked
“Although host gut bacteria are responsible for synthesizing a large quantity of thiamine and may contribute significantly toward total thiamine intake, there are also groups of bacteria including Clostridia and Bacillus which produce thiaminases and can destroy thiamine. It is therefore possible that severe cases of dysbiosis could have a severe impact thiamine status.
It is also possible that thiamine status is negatively affected in hydrogen-sulfide dominant SIBO. Although the animal research investigating hydrogen sulfide has yielded inconclusive results, it is well established that sulfite (an intermediate in hydrogen sulfide metabolism) can destroy thiamine. The sulfite ion is capable of cleaving thiamine at its methylene bridge, rendering the vitamin ineffective. Hence, because hydrogen sulfide influx into the cell may result in higher sulfite concentrations, this could place intracellular thiamine stores at risk for degradation.
In support of this, in vitro data shows that sulfide reduces the concentration of thiamine in white blood cells. Furthermore, veterinary data shows that excess dietary sulfur coupled with a subsequent rise in hydrogen sulfide production increases the requirement for thiamine in the brain and central nervous system and can eventually lead to secondary thiamine deficiency. Additionally, thiamine supplementation was shown to protect animals against sulfide toxicity, which suggests that excess hydrogen sulfide does indeed negatively impact the integrity of thiamine. ”
What are the symptoms of Hydrogen Sulfite SIBO? https://drruscio.com/hydrogen-sulfide-sibo-testing-treatment/
– Digestive complaints (diarrhea, constipation, bloating, gas, etc)
– Pain (abdominal/visceral, pancreas & bladder, joint pain)
– Sensory (photophobia, intolerance to noise, tingling in extremities, numbness)
– Histamine & salicylate intolerance
– Feel toxic (hydrogen sulfide is a toxic gas that can damage nerves or mitochondria in excess)
– Sulfur-containing foods and supplements worsen symptoms (Epsom salts, garlic, MSM, berberine sulfate, etc.)
– Rare: gas smells like sulfur (or rotten eggs)
These symptoms are probably well known to people with for example fibromyalgia or MCAS.
According to Dr. Greg Nigh (Author of “The Devil in the Garlic: How Sulfur in Your Food Can Cause Anxiety, Hot Flashes, IBS, Brain Fog, Migraines, Skin Problems, and More”, garlic and onions seems to be the worst foods for people with Hydrogen Sulfite SIBO or people with sulfur metabolism problems in general.
I have a mutation in the CBS gene which is involved in the sulfur metabolism. I’ve never tolerated garlic or onions or mustard… so I did a test.
I bought capsules with allicin, a component of garlic. I took 5 capsules in the morning, during the day and in the evening.
I stopped after one day because I developed extreme pain in my hole body, my brain fog got extremely worse, I was having night sweat like crazy, frequent uncontrolled muscle twitching, the heart rate has increased significantly, the eyes have been watering a lot, the dizziness has increased again, as has the pain in the abdominal area.
I had extremely severe cramps in my calves and soles of my feet, which did NOT improve with magnesium and potassium. When I took larger amounts of yucca extract, the cramps stopped. Yucca extract can reduce the levels of ammonia in the body. Ammonia is a byproduct of sulfur metabolism in the body.
I had to up the B1 dosis extremely to get the same effects as before this test. It seems the symptoms are a mix of a toxic Hydrogen Sulfide, ammonia (muscle twitching, eyes watering, cramping) and symptoms of B1 deficiency because of the Hydrogen Sulfite. It took me nearly seven days to recover to my “normal” set of problems.
https://www.youtube.com/watch?v=Y5Hm8nYmDmw
In this video, at the 4:45 minute mark, Dr. DiNezza speaks about “viscerl hyersensitivity” in Hydrogen Sulfite SIBO and that research has shown that with Hydrogen Sulfite SIBO you have either too many mast cells or mast cells that are too active and she asks the question if it is the hydrogen sulfite that is causing the mast cells to degranulate -> MCAS ANYONE?
Interesting fact: Dr. Antonio Costantini also treated Parkinson patients with high dosage Thiamin
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3762356/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5884259/
And now this study from 2022: Hydrogen Sulfide Produced by Gut Bacteria May Induce Parkinson’s Disease – BOOM!
https://pubmed.ncbi.nlm.nih.gov/35326429/
Now I know why ALL of my symptoms improved when I treated my SIBO, however my SIBO came back several times. I didn’t take B1 back then, so maybe this time is different….
Best regards
Stefan Lehnig
Any consensus on the dose range for Benfotiamine? I don’t want to overdose on it since it is fat soluble. Thanks!
How’s it going for folks that are doing the high dose B 1? any suggestions or recommendations where to start?
thank you