Is simple and cheap relief from ME/CFS and FM possible? If the experience of one blogger is representative it may be. National Fibromyalgia Association founder and ProHealth blogger Karen Lee Richards had fibromyalgia for almost 25 years before she stumbled on a simple and cheap remedy that worked for her.
Has a piece of the missing puzzle been hiding in plain sight all this time? It’s too early to say that but some people are finding relief.
A very small Italian fibromyalgia ‘study’ caught caught her eye. Three fibromyalgia patients reported decreases in fatigue and reductions in pain after taking high-dose thiamine (vitamin B-1). Karen contacted the Italian authors of the report, did some research on her own, and followed up on the small study with her own personal trial.
In a ProHealth blog two days ago this two-decade-plus fibromyalgia patient reported that by the seventh day of her high-dose B-1 trial she had so much energy that she “almost bounced from one activity to another and kept thinking, “I feel so good! What can I do next?” Pain reductions were modest, but her energy level was better than it had been in decades.
That’s HIGH-DOSE Thiamine Therapy
This is high-dose vitamin B-1 therapy. According to Medline the recommended daily thiamine dose for healthy people is 1-2mgs and 300mgs for people with ‘severe’ thiamine deficiency. The Italian group gave their patients (with normal thiamine blood levels) from 600 to 1,500 mgs of thiamine per day (depending on their body weight). The doctors observed an ‘all or nothing’ response, with no response being shown until the correct dose was found.
Side effects consisted of tachycardia and insomnia in a few patients which disappeared when the dose was lowered. The Mayo Clinic reports that thiamine is generally considered safe and relatively nontoxic, even at high doses. Dermatitis or more serious hypersensitivity reactions occur rarely. Large doses may cause drowsiness or muscle relaxation. Click here for more on side effects from the Mayo Clinic.
B-1 tablets are not always found in health food stores but inexpensive sources can readily be found online. Prohealth, for instance, sells enough B-1 for a month at the highest dose recommended, for $12.49 (500 mg/100 tablets). ( The level of B1 in B-complex mixtures is far too low to suffice. )
Antacids, diuretics, barbiturates, tobacco, alcohol and large amounts of coffee and tea (> 1 liter/day) can reduce thiamine absorption.
The Italian Connection
“Chronic fatigue that accompanies inflammatory and autoimmune diseases could be the clinical manifestation of a mild thiamine deficiency, probably due to a dysfunction of the intracellular transport or due to enzymatic abnormalities, and responds favourably to high doses of thiamine.” Constantini et. al. 2013
Two Italian practitioners, Constantini and Pala, had noticed dramatic decreases in fatigue and other symptoms in their ulcerative colitis patients treated with high-dose B-1. (Thiamine is used to treat ulcerative colitis and other gastrointestinal disorders).
After finding marked reductions in fatigue in ulcerative colitis patients, the Italian practitioners moved onto other fatiguing and inflammatory disorders.
Check out these symptoms from one 51 year old patient with ulcerative colitis for 23 years: fatigue upon wakening, sleep disorders, anxiety, depression, mood fragility, memory loss, attention problems, stress intolerance, episodes of tachycardia, migraine, nausea, muscle weakness and cramps, burning foot pain, intolerance to cold, and dry skin. Her tachycardia, nerve pain and central nervous system symptoms suggested that thiamine deficiency might be present. She received 50 mgs of intramuscular thiamine for three days and 600 mgs of oral thiamine thereafter. After a couple of days her fatigue and other symptoms waned; after 20 days she was well.
After this happened with two more patients they felt they were onto something. A subsequent study of 12 ulcerative colitis and Crohn’s disease patients found high reductions in the low to moderate fatigue levels they were experiencing. (Only a few patients had fatigue similar to that typically experienced in ME/CFS.) Those results suggested to them that ‘mild’ thiamine deficiencies could be contributing to the pain and fatigue of a number of inflammatory and autoimmune disorders, and they moved on to fibromyalgia.
The three patient FM cohort found dramatic reductions in fatigue and pain occurred quickly (within a couple of days) after the correct dosage was found.
The Chronic Fatigue Syndrome/Fibromyalgia Connection
Early ME/CFS/FM studies suggest B-1 supplementation might be helpful. Reduced levels of three B-cell dependent enzymes including thiamine dependent transketolase in ME/CFS patients vs healthy controls prompted the authors of one study (including Simon Wessely) to report that “the data are consistent with functional efficiencies of pyridoxine, riboflavin and thiamine.”
Since dietary studies suggested poor diet could not be the cause, the authors suggested excessive vitamin loss, catabolism or high B requirements were probably responsible. They concluded that “More detailed studies of functional vitamin status in relation to clinical features of CFS (particularly central nervous system signs such as depression and memory impairment) are clearly indicated.”
The French Connection
Across the channel, studies done in the early 1990s by J. B. Eisinger, a French researcher, concluded that thiamine metabolism was impaired in fibromyalgia. Citing the irritability, frequent headaches, unusual fatigue, muscle tenderness upon pressure palpitation, muscular weakness, irritable bowel syndrome, and sleep disturbances, Eisinger published at least six studies on thiamine and fibromyalgia and/or chronic pain (most of which are not available electronically) in the early to mid 1990’s.
Scattered reports from decades ago suggested thiamine deficiency might exist in FM/ME/CFS. Time will tell if an opportunity was missed.
He concluded that the thiamine-dependent enzyme abnormalities he found in fibromyalgia were similar to those found in Wernicke-Korsakoff syndrome, a thiamine deficiency disorder associated with alcoholism. Thiamine deficiency is also found in Alzheimer’s and diabetes, and it can affect memory function.
Eisinger proposed that ‘complex thiamine abnormalities’ in FM could account for the “reduced nitric oxide (and impaired muscle relaxation and microcirculation) or glutathione (and muscle soreness), impaired glycolysis (and muscle fatigue), or even serotonin depletion (and decreased pain threshold) observed in FM.
Recently a review article suggested that undiagnosed thiamine deficiency is commonly misdiagnosed and primarily affects the central nervous system.
The Autonomic Nervous System Connection
The panoply of autonomic nervous system symptoms associated with thiamine deficiency (tachycardia, unstable pulse pressure, attention deficit, mitral valve prolapse, etc. ) is intriguing given the prominent role the ANS plays in chronic fatigue syndrome.
Thiamine and Pain
Thiamine and benfotiamine (BT) are inexpensive and readily available over-the-counter, yet these compounds are not routinely used to treat chronic pain. Hurt et. al.
Some evidence also suggests thiamine may be an effective analgesic. High-dose thiamine and benfotiamine (S-benzoylthiamine O-monophosphate, BT) administration reduces pain in animal models of inflammatory and neuropathic pain. In the laboratory, thiamine also reduces nerve-injury-induced hyperexcitability. How either of these compounds inhibit pain, however, is unknown.
Interestingly, thiamine is also involved in the synthesis of gamma-aminobutyric acid (GABA). A recent Gulf War Syndrome study suggested glutamate/glutamine imbalances could contribute to the cognitive dysfunction found in some GWS patients. Marco reports that “the brain lesions in Wernicke’s encephalopathy are exactly the same as those associated with glutamate excitotoxicity.
In Wernicke’s encephalopathy, thiamine deficiency and glutamate promote excitotoxicity with thiamine deficiency resulting in a downregulation of the GLAST glutamate transporter thus impairing glutamate clearance from astrocytes The results are “lactic acidosis, brain edema, oxidative stress, inflammation, and white matter damage””
- Check out Marco’s blog on glutamate/glutamine imbalance in ME/CFS and other neuroinflammatory disorders here. Check out his Neuroinflammatory series here.
Thiamine deficiency can also cause peripheral neuropathy (tingling, numbness, etc., or sensory loss) which is common in both ME/CFS and FM.
The Magnesium Connection
Since magnesium binds thiamine to thiamine THIAMINE TO THIAMINE?? using enzymes, low magnesium levels could impair thiamine activation. Eisinger concluded that the reduced magnesium levels he found in FM suggested thiamine deficiency was present. Magnesium levels were moderately low in one ME/CFS study.
A Masked Deficiency
Malabsorption is a possibility, but normal blood B-1 levels suggest the B-1 is getting from the gut to the blood. Constantini and Pala believe B-1 transport from the blood to the mitochondria is being interrupted by transporter or enzyme problems.
Take the High Dose B-1 ME/CFS/FM Poll here
Conclusions
The reports are preliminary and mostly anecdotal, but the Italian report and Karen Lee Richards’s experience suggest high-dose Thiamine (B-1) supplementation could reduce the fatigue and pain in some ME/CFS/FM patients. With few side effects reported, this low-cost approach to ME/CFS/FM appears to be well worth trying.
In a couple of days we’ll start a survey to get an idea of how effective this supplement is.
- Check out Karen Lee Richards blog here.
I read the blog on Wednesday. I bought some 300 mg tablets of B-1 yesterday and took one. It was the best day I have had in years. I found myself standing and looking things up on my computer. My husband said “Are you standing while browsing?” I said, I guess I am (standing is not usually my best thing). We then talked about the last time he had seen me with so much energy. He said 1996. It teared me up a bit.
I’m only on day 2 so I can’t tell you that it will keep working or if it will plateau and no longer help. But I am very optimistic. Hard to believe 17 years of my life could be gone due to a vitamin deficiency. But wouldn’t it be grand to finally have an answer?
Lynn
Isn’t that something….I ordered some online and am looking forward to trying it out.
Wouldn’t it be something if something like this really helps. One can always hope….
Good luck with the continued experiment!
Beri Beri caused by B1 deficiency was the first recognised cause of neuropathies;
B1 Malabsorption due to alcohol abuse contributes to the high levels of peripheral and autonomic neuropathy found in alcoholics;
Approx 50% of fibro patients tested positive for peripheral neuropathy using objective skin puncture tests;
Brain lesions in Wernicke’s encephalopathy are exactly the same as those associated with glutamate excitotoxicity.
In Wernicke’s encephalopathy, thiamine deficiency and glutamate promote excitotoxicity with thiamine deficiency resulting in a downregulation of the GLAST glutamate transporter thus impairing glutamate clearance from astrocytes The results are “lactic acidosis, brain edema, oxidative stress, inflammation, and white matter damage”
This was enough to convince me that B1 might help treat my peripheral neuropathies (and possibly autonomic ones). Funnily enough I’m just back from stocking up on good old brewer’s yeast which I’ve been taking for 3 months or so. Not in these mega doses though.
Add to the above, the link between extracellular glutamate and lactate levels in Gulf War Illness as per Cort’s recent blog and you can add severe cognitive dysfunction to the pain and fatigue.
Didn’t know thiamine was involved in GABA synthesis – make sense.
Thanks Cort – I’ll up my intake of brewer’s yeast!
“Brain lesions in Wernicke’s encephalopathy are exactly the same as those associated with glutamate excitotoxicity.
In Wernicke’s encephalopathy, thiamine deficiency and glutamate promote excitotoxicity with thiamine deficiency resulting in a downregulation of the GLAST glutamate transporter thus impairing glutamate clearance from astrocytes The results are “lactic acidosis, brain edema, oxidative stress, inflammation, and white matter damage””
Who knew?
Too much glutatmate in the wrong place really mucks things up…I think I may add to that to the blog…if that’s alright.
The next couple of weeks are going to be interesting…
“Who knew?”
More in need of B1 then we thought then? 🙂
http://www.cortjohnson.org/blog/2013/05/21/from-mood-disorders-to-mcs-neuroinflammatory-model-takes-on-symptoms-of-chronic-fatigue-syndrome/
Good luck!
In a long history of ME I developed severe allodynia in November of 2011 which is barely ameliorated by the drugs I currently take. I have tried benfotiamine but sadly my pain levels rocketed. I seem to be at the mercy of paradoxical reactions for meds and supps, which is very disheartening.
Sorry to hear that Rosie…I know what it’s like to have weird reactions to drugs and supplements that should help. I can’t but think we’re just missing something that’s gumming up the works….BT should be assisting thiamine, I think. Have you tried high dose B-1 yet.
No tbh I haven’t..well not for this latest problem anyway. I’ll ponder it…but sadly everything seems to make me worse atm 🙁
Hi Rosie,
My M.E. Doctor says it is not unusual for many drugs or treatments (including massage or physio if NOT done VERY carefully) to have the opposite effect than intended, when tried on a person with M.E…. Exactly as you said : paradoxical reactions. I would be very careful & get my Doctor’s opinion before trying anything new. I hope you have a Doctor who knows M.E. well.
P.S. I know massage isn’t a “treatment”; it’s more like a “treat” ! The effect feels good at the time but doesn’t last. (and it’s too expensive to do regularly !) But I’ve had certain unexplained major pains happen, mainly one in my neck, for which Physio was recommended &, my Doctor said to be SURE I got someone with lots of experience with Fibro & M.E. or it could make me a lot worse. I got one who had years of experience with Fibro, not M.E., but she was very careful & knew to listen to me & my body. I know I’m off-topic as we were talking about drugs, but the same thing applies. Others can be helped by a drug, but we can be made worse. 🙁 I have allodynia as well, but have never tried a drug for it. It sounds like yours is much more severe than mine. So sorry to hear. Good luck ….
I agree that regular (Swedish) massage feels good at the time (with a good therapist, that is, but doesn’t last. Until I discovered Thai massage. For the past 10+ years a Thai massage every two weeks has been a necessary component of my treatment, and I would put it on equal footing with my pain medications (which is substantial) in efficacy. Thai massage focuses on connective tissue at joint/muscle interfaces rather than pressure on muscle bodies. As time goes by it seems more therapists are training in Thai massage. I highly recommend giving it a try!
Note that you may feel wiped out for a day or so after the massage; I suppose from “toxins” being liberated, but I find it keeps me from developing severe areas of tension in my muscles (trigger points), and I hardly ever get neck/shoulder related headaches any more.
Sorry, that was off topic, Cort. On topic, I tried benfotiamine recently with no evident benefit (I was hoping to decrease neuropathic pain). Perhaps I will try straight B1 at high doses.
Thanks for interesting blogs!
Thanks for the hijack Vlynx…Very interesting 🙂
Roxy – i started benfotiamine and methyl b12 for my chemo induced neuropathy that i have had for 15 years. i started with 150mg/ 5000 ug daily and the pain in my feet flared up just like you experienced for a few days! But after that it waslike magic.
My nerve damage is at least 90% better. there are several european studies out there about befotiamine and methyl b12 to heal nerve damage.
i started supplementing about a year and a half ago, this is the first time i can feel grass under my feet since 1996!
So dont gove up, or be alarmed by the initial increase in nerve pain.
This stuff really works on nerve pain- my energy improved too but i always thought it was the b12, but now i have to consider increasing my benfotiamine because my energy has dipped again.
Be careful with benfotiamine, i read it can cause diarrhea at high doses.
i now tell everyone who will listen to me about my sucess with this treatment for neuropathy- even after enduring the pain and numbness since 1996.
e first time i can feel grass under my feet since 1996!
Sorry that was for Rosie not Roxy!
Wow – that’s crazy. Thanks for such an informative article, can’t wait to hear more about it. I wonder if correcting a partial methylation block first would allow for lower doses of B-1 to work?
The B vitamin story is so complicated isn’t it…I would love to have an answer to that question…
I wonder if some of these ‘miracle cure’ stories are actually based on some people diagnosed with fibro, ME/CFS, etc. having genetic polymorphisms that keep them from metabolizing certain vitamins properly from the inactive to the active forms. That could be one reason why you hear random people saying substance X/Y/Z works so well for them but when a larger group of people try it they only come back with a report of ‘meh, didn’t do anything for me’.
Lynn, I too have suffered from Fibromyalgia for the past 15 years (I am at the stage that I also have osteo arthritis and can no longer walk more than a block, I need to walk because my husband had a stroke 5 years ago and we don’t have a driving license between the two of us. Somebody will be accompanying me to the Pharmacy tomorrow to buy Vitamin B1!!! Good luck! Will you keep us posted?
According to the stats, about 12 million people are employed in the healthcare system in the US,alone. A few million more in support systems, related, delivery drivers, etc.
If non-drug modalities are to become prominent it mitigating the degenerative diseases, how many high and good paying jobs would be lost? Doctors and nurses would be the first to go. This is a serious consideration! RP
The Patient Advocate wrote about B-1 once. I will have to re-read it. Here it is:
http://cfspatientadvocate.blogspot.com/2011/07/thiamine.html
I have long wanted to try B vitamin supps. I’ve have read a ton abt them & have no doubt they would be helpful for many of us. However, I can’t find any that my GI system can tolerate – they all make me throw up (& I have tried a variety of pills, drops, sublinguals, etc of the various different B vitamins……B1, B 6, & B 12 seems esp important for the issues that people with ME/CFS have).
Hi Tammie, have you ever heard about NAET ? (Nambudripad’s Allergy Elimination Techniques). It is a wonderful method, a painfree way to get rid of any hidden ‘allergies’ or intolerances. (if you get sick from vitamines, it is possible that you have an ‘allergy’ for one of the vitamines, so your body can’t deal with it. And so your levels of that B vitamine can get lower and lower. I learned a slightly different method of NAET (it’s called Quantum Allergy, I learned it in Holland), and in one word: it’s amazing ! People can be ‘allergic’ to all kinds of things, without ever knowing. For example: a man had serious lower back pain for over 30 years. At some point, the therapist discovered that the man had an ‘allergy’ for the wood of which the chairs at his school were made from, when he was a child. And the allergy showed itself in lower backpain. And the allergy was treated in a really simple way, and his backpain was gone. My English isn’t good enough to explain it properly, but D. Nambudripad wrote a book about it, and it’s an eye opener ! People with fibromyalgie get cured, or have less pain, migraines, stomach aches, eczema, you name it, you can get help with NAET.
I do have a ton of allergies & chemical sensitivities, & I have heard of NAET. However, my insurance won’t cover it & I’m on disability which doesn’t even cover all my basic needs, so there is no way I can afford it. I wish I could.
Hair transplant in Cuba might be an excellent option if self-pay or uninsured. Utmost care.
Remembering the old advertisements for ‘Wonder Bread’ growing up, boasting of thiamine. Think the key is the intramuscular injections for many supplementals, including B–12 (high dosage) and that some have magnesium in IV solutions. Bypassing gut dysfunction, they can get to where they are needed. Yet, I was so ill at onset that using this did nothing. Truly was dedicated, and was always ordering from Pro-Health. We, as patients, are similar in needs but different in utilization and symptom response. The key for me was to not give up, trying different ways to get supplements and B-1 was one I tried. I now realize I was much sicker and further along in disease process than I knew, and was conflicted by this, and still have early memories surfacing of certain hard signs and symptoms. I know the benefit of all the B vitamins and became driven to juice and try every way possible to get what was recommended. (Process of cutting fruits and veggies was exhausting, plus even went on wheat grass, which made me so ill, I could not go further.) The Farmers’ Market holds the freshest and best produce yet I cannot rise early enough to get there. They leave by noon, most of the time. Sounds encouraging, though, and hope others see response. Sometimes any change is uplifting, and before plateau sets in, at least patients have a reprieve. The plateau may not happen! Hope is like a medication in many ways, but mega dosing is not wise without a doctors’ involvement. Our diets are not as deficient as we think, but a good multiple can back up deficiencies suspected. I also had the issue of ‘after-taste’ and if I ever taste fish oil again, I will go back to real fish, not always affordable. Interesting, awaiting results from you, Cort!!
Cort, well put together. TY for your delving into the research and connecting the dots, something that doesn’t get done frequently, and something that could improve is researchers would start comparing notes. Nevertheless, for me there were three key words:
Karen Richards
Muscle relaxation
ProHealth
Oops, guess that’s 5.
Ordered. Reasonable enough to give it a try.
Thank you for this article Cort. I was diagnosed with type 2 diabetes in 2009, which developed 4 years after my ME/CFS started. Having read your article I can’t help but wonder if B1 deficiency may be part of the answer to my many symptoms. I know I have one metabolic problem (diabetes) which just adds to the energy problems caused by ME/CFS. The fact that diabetics are B1 deficient, added to the possibility of B1 deficiency in ME/CFS, makes trying a B1 supplement a no-brainer for me. I’ve just ordered some to try. I’ll let you know how I get on.
Very interesting Paul and good luck…Mayo has this cautionary note about diabetes –
Use cautiously with vasodilators (blood vessel-widening agents) in patients with high blood sugar levels or diabetes, as thiamine has been shown to improve vasodilation in these patients.
If you’re using a vasodilator you would probably want to take it slow. Good luck..
I will take it slowly Cort as I use a vasodilator. I’ll particularly keep an eye one my blood sugar levels.
I recently had to have tests done for urinary problems, and had to make a note of what I was drinking every day. I was consuming over 2 liters of tea and coffee a day, which really surprised me. Having read how tea and coffee affect B1 this may also be part of the problem. I had changed to decaffeinated but have just read that even decaff tea and coffee have a adverse affect on B1. It looks like ill be drinking herbal tea from now on!
This reminded me of any e-mail that I did over a year ago and surprisingly – I still had it. I’m going to post some of it —it was to another POTS person and he had told me to look into green tea and finding out that green tea was high in B1 – got me on the search. I need to up my B1 and start on the cilantro again. See what you think. Here is a reference that gives lots of info on B1 and what the symptoms of low levels could be.
Thanks for the article Cort.
Here’s my e-mail.
________________________
http://en.wikipedia.org/wiki/Beriberi
“Okay, looked up green tea and this is what I came up with. Is this what you were referring to?
Okay, here comes some more info. I have had arsenic poisoning before. This is connected to beriberi and when I was so bad years ago and got over this I was using high doses of B Complex vitamins and additional Vit B1. I got my levels of arsenic down by eating tons of cilantro. No ones knows where it came from. The doctor said it was in high concentrations in the air where we lived and for some reason, my body up-took it too much. We also had well water and it could have come from the water. But, no one else got sick from it. It could explain my figuring out that glutamates have a horrible effect on me and taking anything that interferes with my GABA levels is not good. Even though all indications are there is a dysfunction in my GABA receptors. The key could be the B1 deficiency. There is a new type of B1 called Benfotiamine that is supposed to be uptaken by the body better.
You might be on to something here. Beans are also high in B1 and protein. Why, didn’t you just tell me to look at B1? Or, is this just a side point I’m connecting.
This could explain my neuropathy, gait problems, weakness in my muscles, and other issues. I’ll get back on the high intake of cilantro. Which I love and it also helps with kidney function – could help with the dehydration and the disturbance with the renin/aldosterone levels too. ”
________________________________
By the way —-this was a side point and not why I was told to look into green tea. Appears green tea can boost dopamine levels and plays a part in NO (nitric oxide) levels.
Issie
Somewhere I read the story of a man who benefitted enormously from mega-doses of B-1. He put 20 tablets in his pockets every morning and every few hours would take 2-3 more…. I tried this for awhile and found I just wasn’t following through (women’s clothes don’t have pockets as often!!), but I’m going to try again.
Just started with a new doctor and he put me on Provigil (ME/CFS for 10 ys.)—-yeah!!! I’ve heard it is so helpful. Been taking it for 2 weeks and don’t notice anything but I’m on just 200 mgs. Maybe I need more.
I was lucky enough to meet Suzanne Vernon, Ph.D. and Kim McLeary in Santa Barbara about 2005—they were out talking to groups of people and they were so hopeful and excited about science!!! I am too!! YEAH SCIENCE!! My brilliant daughter is about to start school at Michigan State and is going to do medical research!!!
I have grown weary of this. I never thought I’d be ill this long. Great new book to recommend. Read “The Undefeated Mind: On the Science of Constructing an Indestructible Self” by Alex Lickerman, M.D.
A correction…I just learned that it took Karen Richard 7 days (not three) and her third dose adjustment before she noticed her big energy boost…..she started out low and ramped up her dose; I believe, if memory serves she needed around 1,500 mgs….The point is some experimentation is needed. 🙂
So, let me understand what is being said, *fuzzy brain*, B1 may help increase energy, and ME/CFS is not necessarily caused by low B1 levels? Cause I got a whole lot of lab work that says its my immune system!?
thanks guys.
Great, will get some and look forward to the survey. Any thoughts on adjustment for body weight? My son only weighs 48 kg.
Thanks Cort for that analysis on B1 for FM & ME. Readers in Australia might like to know that Chemist Wharehouse sells “Betamin” brand B1 (Thiamine Hydrochloride) quite cheaply. It will also be interesting to hear of readers’ experiences with benfotiamine, the alternative form of B1.
I just checked my dosage of B1 in my supplements and it is 30 mg. This is 2000% recommended dosage. According to this information that is woefully insufficient to be therapeutic. I look forward to trying a higher dose. I am interested to see what the survey information will show. Thanks for all the correlating information to the ProHealth article. I had read it and was planning on trying to research thiamine more. I was happy to have found my research done for me. 🙂
Glad to get that out of the way for you 🙂
I have a strange question. If all this is true, then why can I not tolerate B1 or for that matter benfotiamine. Every time I have taken B suppliments with B1 or benfotiamine I have gotten much worse and taken a while to get back to base line. I discovered this after talking to a friend who also has the same problem and found that it was true for me also. The last time this happened, I had a nutritionist who put me on some B supplements that had benfotiamine in them and I went down hill in a hurry. Took me a while to realize that benfotiamine was one and the same as B1. Slowly got better after I stopped taking them but took a while to get out of my system. I am taking large doses of B2 and taking it on an empty stomach and this seems to be slowly helping. Maybe after I get my B2 stores back up I will be able to tolerate B1 but for now it just makes me very sick.
If anyone has any thoughts on this I would love to hear them.
I don’t but I react badly to B12. We may be in the same boat. I haven’t tried the B1 yet.
I also react badly to b12
I couldn’t take one form of B12 – but do well on the methyl form of B12 – the other forms make me sick. It could have to do with the way your body breaks down things and if it goes in the right direction when it’s broken down. Has to do with the methylation pathways.
As for B’s and issues with taking them – could just be one particular type and could be the form that it is in. Most B complexes make me sick – but, some individual B’s will be okay. A person could have a problem with yeast – lots of the B’s are taken from Brewers Yeast and that can give some issues.
As for B1 – I have been on this for awhile now – over a year. I can’t say that it has “healed” me – but, has maybe improved my energy. I’m not on mega doses of any of my supplements and taking none of them daily. (This is a new way of thinking for me – because for years I had just the opposite thinking and approach. Mega doses has to be broken down by the body and can add undue stress to it – especially if your body isn’t processing things correctly. Since I’ve been on a low fat-vegan diet —I even feel less need for supplements. My assimilation has greatly improved and so has my health.)
As for the question in regard to autoimmune function and labs pointing to that as being her cause of illness —I too have autoimmune issues and I’m sure that it is at least part of – if not one of the main causes of my issues. But, whose to say that maybe an alternative support might tweak that back into the correct direction. If there is a genetic mutation that becomes activated – is there a genetic epigenetic response/solution that maybe could “turn off” that “turned on” response? Science is greatly advancing and they are trying to figure out that answer. Addressing my genetic mutations, working on my immune system responses and using whole foods and alternative supplements —has been the best direction I’ve gone in trying to sort myself out. I think maybe – there could be a good response for others with this approach. It for sure has been the right direction for me.
Issie
Thanks Issie…thanks for the tip on the methyl B12. I walked out of a doctor office after taking a B-12 dose and was lucky to find my way out to my car I was so confused…Its rare that I have a bad reaction..I remember it well 🙂
What dose of B1 have you been taking?
I have the Life Extension brand of Benfotiamine and it’s a 250 mb cap. Because I have tachycardia due to HyperPOTS – I have to be careful with any energy increase as it could ramp up my sympathetic system with an unwanted reaction. Since I tend to have more issues with sympathetic ramp ups and need for my parasympathetic to be activated more.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2644268/
I just found this article on dysautonomia and deficiencies with thiamin and it’s relationship to diet. (I promise – I haven’t read this before. But, it sounds like it could have come out of my mouth and the conclusions I’ve come to – with my experiments with myself and diet.) This is a very weighty article – and very interesting.
Cort, I react that way with B12 shots. Can’t take them at all and find that I can only do a sublingual Mehyl B12 of 1000 mcg. only once a week or it’s too much for me. Some people have to use homeopathic amounts of vitamins and minerals because of the sensitivity of their bodies and the breakdown of the pathways. You have to go low and slow with anything and make sure that you are not ramping something up before you have something else that needs to work —working. The uptake then will be the desired response and not a negative reaction. (My guess, is there is probably a mutation of one of the pathways and must be addressed first. Even though you may need B12 – you can’t take it or get it into the cells properly without addressing – first things – FIRST.) That could also be true with blood test that show high circulating levels but with symptoms of deficiency. If it’s not going where you need it —it’s going to the desired places and will create more issues for you because your body has to break it down and process and eliminate it. Lots to learn about supplements and what is needed to have the desired response.
Issie
Hi Cort,
l find this very interesting! l will definitely try this as l have many neurological symptoms and digestive problems and orthostatic intolerance. l will also be buying some tomorrow to try. l have been ill with ME for 15yrs and READING is a big problem, so it is very interesting that a deficiency in B1 can produce optic nerve dysfunction and so many people have visual problems. l have been trying to find out about this for years. l am unable to tolerate zinc as it exacerbates the eye problem and for B’s l have not been able to tolerate high doses and some times even the very lose dose is not tolerated. Maybe it comes down to this lack of enzyme that is needed to process normally. But l am happy to try high dose B1 if it bypasses the defect. ( l remember seeing an article in a paper about a woman who became very ill and she had an missing enzyme and they gave her an injection and she recovered- will try to find it- May not be related at all)
But what dose B’s to take with the high dose B1?
Thankyou Karen Richards and to you Cort for all the articles that l have not been able to read but hope to. Cheers
The Italian researchers used between 500 and 1,500 mgs/day. If the effects occur they appear to occur rather suddenly. It took Karen three tries before she got the dose right. Good luck!
Hi Cort, 3hours ago l tried 250mgs of B1 with a 1/2 dose of B’s 5omgs and at first l felt good then l felt a lactic acid flash and began to ache(after being down the street for only 1/2 hour then back lying down) Then about 1 hour later my digestion started to kick in and l could hear rumblings and l thought to myself this is good! Then l got quite hungry and had lunch then l suddenly l could taste my meal that tasted so sweet & yummy. l realised my senses had improved. Even my eyes felt a little less pressure and clearer. l will increase very slowly as l want to be careful & will try again tomorrow.:-)
Thankyou Ian Barnes will purchase the better B1 as l could only get thiamine nitrate.
Thanks, I’ll try that out again. I’ll have to start low dose, though. B vitamins are dynamite to me. Not only that, but sometimes the effects from them change from time to time. I finally got the vertigo dizziness symptom that Laura H. mentioned and it came from MB12. Even lying in bed with eyes closed, the room was spinning. These days MB12 helps me sleep better, dream more, and cope with heat.
I don’t know what’s going to happen with B1. I was taking multi B when I first collapsed with ME.
Some may find this paper useful :
Thiamine in Nutrition Therapy
Abstract
Clinicians involved with nutrition therapy traditionally concentrated on macronutrients and have generally neglected the importance of micronutrients, both vitamins and trace elements. Micronutrients, which work in unison, are important for fundamental biological processes and enzymatic reactions, and deficiencies may lead to disastrous consequences. This review concentrates on vitamin B1, or thiamine. Alcoholism is not the only risk factor for thiamine deficiency, and thiamine deficiency is often not suspected in seemingly well-nourished or even overnourished patients. Deficiency of thiamine has historically been described as beriberi but may often be seen in current-day practice, manifesting as neurologic abnormalities, mental changes, congestive heart failure, unexplained metabolic acidosis, and so on. This review explains the importance of thiamine in nutrition therapy and offers practical tips on prevention and management of deficiency states.
http://ncp.sagepub.com/content/27/1/41.long
Lots of information on :
sources of B1 (gut bacteria are a major source);
causes of deficiency (deficiencies can occur very quickly);
biological role of thiamine (a necessary co-factor in the mitochondrial Krebs cycle);
deficiency and lactic acidosis;
clinical features;
standard blood tests for deficiency are unreliable;
thiamine has proven very low to negligible toxicity;
recommended supplementation dosages.
Etc
Yikes! I was in mid dip from way over utilizing my annual summer time rally but dragged myself to town anyway to buy B1s after reading this article. I took 600 mg and my dip subsided. Now what does this mean???? What will happen tomorrow?
Thanks for continuing to make the connections Cort!
In my view, the catabolism and dysregulation of the mineralocorticoids are chiefly responsible for the deficiencies that with the excessive oxidative stress cause the cellular dysfunction.
Well done for publishing this – Health Rising keeps going from strength to strength!
🙂
Dan
Thanks Dan…I don’t what ‘catabolism and dysregulation of mineralcorticoids’ is but I’m glad it makes sense to you 🙂
Cheers Cort – sorry I wasn’t very clear.
Catabolism is the breaking down of molecules to release energy. Here we are in particular looking at the breakdown of proteins in people with ME/CFS/Fibro which is due to the excessive cortisol release that happens from time to time.
I believe it is this constant breaking down that eventually leads to mitochondrial dysfunction as the nutrients required for the cytric acid cycle become depleted. This is what is being referred to above!
But when we look at all our essential minerals (sodium, potassium, magnesium etc etc.), we know that these are also not in the right proportions in people ill with ME/CFS/Fibro. However, they can swing from one extreme to the other (especially for sodium) as the ANS flip flops from one extreme to the other.
The way these minerals are controlled is via the release of hormones called mineralcorticoids (the key mineralcorticoid is aldosterone that controls sodium and portassium retention) that are released via the adrenal gland, hence the connection to the HPA axis and the ANS dysfunction.
I just ordered some today. Thank you so much for this article, Cort, and for all of the info everyone has shared. After reading the Mayo possible side effects, I sure hope I have the muscle relaxation one. The possibility of energy and relaxed muscles? I’d be over the moon!
I’ll be in touch about what happens with me. (Magnesium has already been helping with at least a hint of ease in my body that had disappeared for so long, I lost hope I would ever get even a semblance of it back.)
I hope someone can summarize responses everyone is getting to this experiment. I’m wondering about the B-1 comment on optic nerve- since I have had optic neuritis and advancing all over neuropathy/weakness-I’m highly sensitive too–only diagnosis I got was FMS-and later when things turned neuro-neuro chronic lyme disease.
We’ll have a survey up sometime this week…I want to give people enough time to get (I had to order it) and experiment for a bit. .
I also wonder if this helps MS patients given the overlap in symptoms?
Ordered both Thiamine and Benfotiamine not sure which to take or maybe both? The Bentothiamine arrived first so started it today. Usually when one B vitamin is taken the rest of the complex should also be taken. Wondering about that with mega doses of T1. Look forward to learning more and sharing results. Thank you Cort! To Your Health!
Good idea to crowdsource some initial responses to a trial of high dose B1. 🙂
I’m on my third day of taking 600mg benfotiamine. Will bump that up to 900mg tomorrow.
No negative effects, very slight transient nausea and some extra sinus draining.
Thanks for the interesting article Cort, and to others for sharing their own B1 n-1’s.
Anne.
I’ve got my B1 in 100mg tablets and am just going to up the dose by 100mg a day until I get to the high dose. Once I get to higher doses of it, should I be taking it all once a day or do you space it out during the day into two or three doses?
Might it cause insomnia? I tried taking a timed release Multi B recently, with my first meal of the day, and I gave it up because I think it was preventing me getting to sleep at night.
I think you might have done wonders for the sale of Vit B1! As soon as I read the article, I had found the cheapest B1 on eBay but when I went back a few hours later to buy it, it was sold out 😉
One interesting note– since I have chronic neuro lyme /undiagnosed autoimmune with advancing MS type symptoms— the Klenner protocol which was developed for MS patients and supposedly had good success used high dose B1 injections as part of the protocol http://www.townsendletter.com/May2003/klennerprotocol0503.htm
From the townsend letter above on the Klenner protocol :
“The protocol of Dr. Klenner’s I have followed consists of: (1) a daily intramuscular injection of vitamin B1 of 300 to 400 mg. The correct dosage can be determined by the level of fatigue the patient experiences. Some patients require 300 to 400 mg daily to experience relief of fatigue symptoms. The B1 is available in a strength of 200mg per ml. So a 200 mg injection would be 1cc. Twice weekly 1cc of liver extract is added to the B1 injection so extra injections aren’t needed. The B1 injectable comes in a 30cc bottle and lasts for two to four weeks. The liver extract comes in a 10cc vial and lasts 5 weeks. The syringe is a 25 gauge by five-eighths inch 3cc syringe.
Note: B1 is not well absorbed in oral form — the daily injection is required for life for successful treatment and recovery.”
Years ago a CFS specialist had me take a lab test by Spectracell and it showed I was deficient in B-1..All the other
B vitamins were OK. I don’t know why I didn’t continue………because when I looked back on my notes from then………I was doing better. My notes are terrible and scribbly but I had written down that the branched chain amino acids need thiamine…….which could be huge especially if you have muscle weakness………..also my notes said that I had a sulfation impairment?…………where my body was not converting sulfites to sulphates properly and sulfites destroy thiamine………….just food for thought. I am definitely going to try it again.
Good luck!
I am on the third day of B1. Started with 100 mg, noticed a slight increase in what I can only describe as “lightness” but no adverse effects. 500 mg on day 2 with an increase in lightness sensation. This isn’t a high, just a subtle feeling that I’m not dragging around 500 lbs of leaden bones any longer…maybe 250 lbs. Today is day 3. Took 600 mg this morning along with my other meds and supplements. Slept through the night–unusual for me to fall asleep quickly and stay asleep longer than a couple of hours. If this is another benefit, I’ll take it even if it’s the only response.
Cheap, easy and safe… but no luck for me (10 yrs CFS/FM), unfortunately 🙂 Gave it a quick go – 1000mg, 1500mg, and 1500mg for three days in a row, and didn’t get anything much out of it. I could feel it kick in and I’d become a touch sharper mentally, but the effect was small and unsustainable – mild overstimulation that gave me a headache later on, basically.
Anyway just throwing in my experience for what it’s worth! 🙂
I am becoming convinced that thiamin is very helpful for some of my key symptoms.
It seems to have a calming effect. I’ve experienced 7 days now where I wake in a calm, not wired or agitated state, and with less pain. My days have been more comfortable, less pain,with more energy and less of the
sickness feelings. The calmness is also psychological, my mood has improved.
I read Cort’s post the day he put on line. I then googled it and spent 2 hours reading about thiamin. Felt it was safe and went out and bought some 500mg tabs. I immediately took two. I considered my body weight, about 170 lbs. and thought 1000mg would be a good place a good place to start.
I have been sick with ME/CFS for 20 years the last 4 have been very difficult, took disability 3 years ago and
was forced, because of illness to retire. I carry high markers for EBV and HVV6, I am receiving ivig treatment for a
dysfunctional immune system and am currently on an antiviral. My response was on the third day.
Last wed. I visited my CFS specialist an told her I was possibly having a good response with B1, on Fri. I emailed her and said I felt sure about the benefits I was receiving from B1, she replied she had already suggested it to a
couple of patients.
I have long thought of my whole body system
being in a state of wired exhaustion.
It seems to calm the circuitry.
I’m not a fibromyalgia sufferer but decided to try this to see if it gave me extra energy. Took 300mg, then 600, 1000 x2 and 1500×3, finished with a couple of days at 1300 plus multi B vitamin. Didn’t notice anything much, slept badly but probably because of the heat. Minor energy change probably due to the dark chocolate I thought might melt in the heat. Disappointing but on to the next trial.
Sorry to hear it didn’t work out and thanks for letting us know.
Could you also report your results in High Dose B-1 survey here?
http://www.cortjohnson.org/blog/2013/07/19/the-high-dose-b-1-thiamine-supplementation-survey-fibromyalgia-chronic-fatigue-syndrome/
On the 1500 mg/day of B1–ramped up this week. I wish I could find a capsule form w/o mag stearate (supposedly helps feed biofilm)? Don’t like the tablets but will continue. I also started a Cal/Mg citrate complex by solary and stopped progesterone cream. And had started a Byron White a-bart herbal 1/2 drop/day–I am sleeping better,deeper, than last week and am less twitchy as I was last week. I am terrible about changing one thing at a time. In a neuro attack right now-so somewhat in a panic thus all the changes. Now, I have to sort out what is helping. Regardless, I plan to stay at the B1 1500 mg for at least a month to see if I can calm the burning , neuropathy, and increased numbness/muscle weakness that wasn’t present before this attack. Hoping B1 will help with the neuropathy-plan also on experimenting with the other version of B1 (bento…..). Fatigue is not my major issue–and muscle pain is not so bad for me in the summer -it’s the advancing neuro immune autoimmune/Lyme disease I’m after. The fibro was a walk in the park (first 8 years of 15 year illness) in comparison to the neurological stuff.
Good luck Selma!
We have a High Dose B-1 Survey here – http://www.cortjohnson.org/blog/2013/07/19/the-high-dose-b-1-thiamine-supplementation-survey-fibromyalgia-chronic-fatigue-syndrome/ – if you want to check out how others are doing.
Selma,
Some have found that after they get their B1 levels up —then —-adding alpha lipoic acid to the mix for neuropathy has been a huge benefit. There are studies showing that alpha lipoic has been more beneficial for neuropathy pains then some of the meds available.
http://umm.edu/health/medical/altmed/supplement/alphalipoic-acid
http://neuropathytreatmentgroup.com/neuropathy-support/press-release
(There are some side effects that you need to watch for – lower blood sugar and lower thyroid function. May need to adjust meds. accordingly. If you do a search on B1 and Alpha Lipoic, you will bring up many post. Some are also using Methyl B12 along with the B1 and ALA.)
But, getting the B1 levels up first —seems to make a big difference in how the ALA works.
Issie
Is it possible to view the results of the survey without taking it?
I haven’t tried B1 yet and am interested to see the survey. Thanks.
Check out the link to the survey results at the bottom of the B-1 survey page.
http://www.cortjohnson.org/blog/2013/07/19/the-high-dose-b-1-thiamine-supplementation-survey-fibromyalgia-chronic-fatigue-syndrome/
Thanks
Great information. I agree with the writer who suggested taking the Methly B vitamins because some B vitamins are made in a yeast base. Candida is a major player for some people with Chronic Fatigue and Fibromyalgia. After five years of CFIDS and Fibro and feeling like I had the drop-dead flu, my doctor put me on diflucan and an alkaline diet. It was the beginning of my recovery. Since then I have completed my doctorate in holistic nutrition.
Diflucan can be hard on the kidneys so is no recommended for long term use and may not be an answer for some people. Neem pills and coconut oil are some alternatives. if I had chronic fatigue and fibro again, I would do “The Emotion Code,” or search out a practironer who does this work and releases trapped emotions. Trapped emotions can contribute and even be the cause of physical illness and emotional issues.
Thanks and congratulations on your recovery…
An explanation of fibromyalgia from a Chinese Medicine point of view and a few historically viable treatment options.
http://www.sacredhealingtree.com/blog/fybromyalgia-chinese-medicine-point-view/