Thiamine Deficiencies, SIBO and Polyneuropathy

[2Cor.12:19]

Hi everyone. Sorry this is long. I’m hoping someone who’s tried high dose thiamine might chime in.

For my backstory, I’m 69 and have been disabled with ME/CFS for 35 years. The first 3 yrs I was bed-bound most of the time and gradually improved to about 70% over the first 10 yrs.

But then 15+ years ago I started developing more conditions, all happening around the same time, slowly increasing in severity. These include POTS & arrhythmia, Axonal Polyneuropathy, memory loss, GERD, IBS-C, non-alcoholic fatty liver disease, SIBO-C, mild pulmonary hypertension, Mixed Sleep Apnea, chronic tinnitus, periodic vertigo, Hashimoto’s.

The past 6 yrs my ME/CFS has put me back in the severe category - 30, by David Bell’s disability scale.

I’ve assumed I’m going downhill with my CFS due to my age and there’s really nothing for it. But now I have hope for some improvement- but not a miracle cure for my ME/CFS.

My recent SIBO dx launched a new area of research and my big takeaway is that many, if not all, of my newer conditions (IBS-C, GERD, SIBO, POTS, Axonal Polyneuropathy, Tinnitus/Vertigo) are interconnected. But which came first and why?

I’m currently being treated for SIBO with Rifaximin but know it will probably come back. Mine is methane dominate and since my gastro dr won’t prescribe Neomycin I’m going a different route- hopefully a better one that will extend beyond my gut problems.

The usual SIBO protocols try to kill the overgrowth via a combo of either antibiotics and/or herbals, and special diets. Problem is, rarely do any of these produce lasting results. Per my drs suggestion, I downloaded the Monash U Low FODMAP app and tried it for awhile, but I’ve come to believe trying to “starve” the bacteria through such radical elimination diets won’t do much in the long run and may be detrimental due to causing additional nutritional deficiencies.

I suspect my SIBO is either caused by OR may be the cause of my gut motility issues due to autonomic nerve damage and nutritional deficiencies. But then, I’ve also been on PPI’S every day for 15+ years so perhaps the PPIs set the whole thing in motion in the first place.

It’s well understood that both SIBO and chronic PPI use cause malnutrition due to malabsorption.

So, my new strategy is fourfold:

1. Eliminate the SIBO
2. Ditch the Nexium
3. Find and correct nutritional deficiencies
4. If possible, reverse my Polyneuropathy, which along with nutritional deficiencies perpetuates the whole thing.

With the rixamin still underway my guts are already feeling MUCH better but I knew getting off PPI’S may be impossible due to GERD.

Enter IBEROGAST: STW 5 (Iberogast®)—a safe and effective standard in the treatment of functional gastrointestinal disorders 8 days into the rifaximin treatment I decided to replace the Nexium with Iberogast. I honestly didn’t think I could pull it off. But it’s now day 3 of the Iberogast and no Nexium and I’ve had NO acid/reflux rebound at all!

Next, I’ve been reading much about thiamin (B1) deficiency and how mega dosing has either reversed or greatly improved all of my conditions: Neuropathy, POTS, fatigue, & cognitive function. Cort Johnson at Health Rising did a survey of patients who benefited from thiamin (B1) mega dosing and the results were remarkable. (I’ve tried megadosing B12 to no avail)

Here’s a great link to a recent research project that was funded by the Bill and Melinda Gates Foundation.

Thiamine Deficiency Disorders: A Clinical Perspective

Hormonematters.com also has a lot of info as Dr Derrik Lonsdale author of
“Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition” is a frequent contributor:

Thiamine Deficiency and Dependency Syndromes: Case Reports by Derrik Lonsdale MD

These were also helpful:

• Thiamine and Hashimoto's thyroiditis: a report of three cases
• Thiamine and fatigue in inflammatory bowel diseases: an open-label pilot study
• Could High-Dose Thiamine (B1) Help with ME/CFS, Fibromyalgia, and the Neurological Complications of Ehlers-Danlos Syndrome?
• How I Found My Long-Lost Energy Again

I’ve ordered Benfotiamine thiamin and will start at 600 mg.

Additionally, to hopefully help with peripheral nerve repair I’ll be starting on Host Defense Lion’s Main a couple of weeks after starting the thiamin. Since the thiamin produces immediate results (if it helps). I prefer to try one thing at a time to know what’s doing what.

Thanks for reading! I’ll report back with results.

 

[JES]

I have had SFN or something resembling it for over 10 years. I used to believe I could fix it with supplements, but I now think most of these cases are immune mediated. I tried all different B vitamins without success, in fact some made symptoms rev up more.

If the idea is to promote nerve health and healing, thiamine could be useful I guess. Diabetics often use a variant called benfotiamine for their diabetes caused neuropathy, which seems to help in their case, but that has more to do with the effects of benfotiamine on diabetes rather than healing nerves directly. I don't think thiamine will tackle the root cause of what is causing POTS and SFN for us.

 

[Mary]

I’ve also been on PPI’S every day for 15+ years so perhaps the PPIs set the whole thing in motion in the first place.

SIBO is often caused by low stomach acid. I don't know how often this occurs, though I suspect quite a bit. So your PPI which does cause malnutrition could very well be a contributing factor to your SIBO and several other issues. Stomach acid helps keep "bad" bacteria under control. Getting rid of stomach acid allows certain strains of bacteria which shouldn't be flourishing, to flourish, which can cause SIBO.

GERD, contrary to what most doctors seem to think, is often caused by low stomach acid, but the conventional treatment is to reduce stomach acid even further, leading to malnutrition.

I was fortunate enough to discover my low stomach acid many years ago and have been taking betaine HCL with pepsin every since. My digestion improved so much after I started taking the betaine HCL with pepsin - a complete turn around. And many people with ME/CFS have low stomach acid. I don't know the relationship but there is one.

Anyways, I think your plan to deal with SIBO and ditch the nexium is a good one. I suggest educating yourself about low stomach acid and SIBO and GERD - you may not need the drugs for SIBO, if you get your stomach acid levels normalized. I'm assuming they're quite low, if they weren't before, because of the PPI. Modern medicine horrifies me quite a bit!

I'd suggest doing some research about all this - here are a couple of articles: What Causes SIBO? – Stomach Acid – SIBO Testing Vancouver Canada

What Everybody Ought to Know About Heartburn & Gerd | Chris Kresser

About thiamine - it boosted my energy quite a bit when I first started taking it maybe 5 or 6 years ago? Can't quite remember, but I had a noticeable boost in energy within 1 or 2 days, followed quickly by severe fatigue. It's a long story but I discovered that the fatigue was caused refeeding syndrome, which caused my phosphorous levels to drop quickly, which caused the severe fatigue. I drank several glasses of kefir (high in phosphorous) and my energy started to return in a few hours. I finally ended up getting a phosphorous supplement which I still take a couple of time a week. So I've had a very good experience with thiamine. I've read a bit about the high dose treatment, and I haven't tried that, yet. Right now I'm taking 400 mg a day, and plan to cautiously increase it, a bit at a time, to see how I do.

But you might want to get your digestion sorted out first, to make sure you can absorb the thiamine if you try it.

Here's an article about refeeding syndrome - Refeeding syndrome: what it is, and how to prevent and treat it (nih.gov)
I think if you just read down through "What is refeeding syndrome", it can give you a basic idea of what it's all about. Actually, in thinking about it, you very likely may be malnourished, in which case you might be a textbook case for refeeding syndrome.

I tried to talk to an endocrinologist about this once, after my experience with thiamine and phosphorous and he scoffed at me, and said that refeeding syndrome only happened to people who were literally starving like in Auschwitz and I of course was not starving. He didn't have a clue.

I don't rely on a doctor's advice without doing my own research. I do my own research first, and then find a doctor who is at least willing to talk to me and listen to me - and if I'm lucky, they will have an inkling of what I'm talking about. I think if you go to your doctor who gave you the PPI and start talking about refeeding syndrome, they might very likely react like my endo did. I never went back to him.

One other example of refeeding syndrome which I've experienced is when I started taking methylfolate - another really nice energy boost, followed by severe fatigue, only this time it was my potassium that tanked. I had been on the lookout for this because of Freddd's posts.

I think functional or integrative medicine doctors are the ones most likely to know about the low stomach acid connection with SIBO and GERD, and the dangers of PPIs etc. Good luck!

 

[2Cor.12:19]

I have had SFN or something resembling it for over 10 years. I used to believe I could fix it with supplements, but I now think most of these cases are immune mediated. I tried all different B vitamins without success, in fact some made symptoms rev up more.

If the idea is to promote nerve health and healing, thiamine could be useful I guess. Diabetics often use a variant called benfotiamine for their diabetes caused neuropathy, which seems to help in their case, but that has more to do with the effects of benfotiamine on diabetes rather than healing nerves directly. I don't think thiamine will tackle the root cause of what is causing POTS and SFN for us.

@JES I'm sorry the B vitamins didn't work out for you. I'll be starting with 600 mg benfotiamine and wait a bit before adding the Lion's Mane. Have you looked into that? Lion’s Mane Mushroom For Neuropathy: Research, Benefits & Dosage

 

[2Cor.12:19]

I don't rely on a doctor's advice without doing my own research. I do my own research first, and then find a doctor who is at least willing to talk to me and listen to me - and if I'm lucky, they will have an inkling of what I'm talking about.

Me too @Mary! Thanks for all the input and links!

Derrick Lonsdale MD (90 yrs old). specialized in nutrient based therapy at Cleveland Clinic's Biomedical Genetics dept. He's written extensively on thiamine deficiency and mega-dosing - wrote this about refeeding syndrome. Refeeding Syndrome in the Context of Thiamine Deficiency

I've been on PPI's so long, that the doctor who prescribed them retired years ago. lOL. Unfortunately, my new gastro doc never discouraged the PPI.

But I've found that switching to the herbal Iberogast made it possible to get off the Nexium without any rebound effect. So that's a good start. STW 5 (Iberogast®)—a safe and effective standard in the treatment of functional gastrointestinal disorders

 

[Mary]

Hi @2Cor.12:19 - I'm glad you were able to get off the PPI so easily! Yeah, this is why it's often not safe to just do what doctors say - your new gastro doc didn't question the PPI.

Here's another link to an article about refeeding syndrome, from the article you linked above: Refeeding Syndrome - Hormones Matter

It's a potentially dangerous condition. He doesn't really explain that in the first article where he just says:

I advised her to start taking thiamine and magnesium supplements, starting with a low dose and advising her that the symptoms would become worse for an unpredictable period of time (refeeding syndrome).

For example, if one's potassium drops too low too quickly, it can kill you. He makes it sound like RS is just an unpleasant side effect. He does explain more in the link in the preceding paragraph, but I also urge you to look at the article I linked in my earlier post.

And I still strongly encourage you to look into the possibility of hypochlorydria (low stomach acid), which can be easily fixed if it's a problem. A simple at home test to check for this is to dissolve 1/4 - 1/2 teaspoon of baking soda in 8 ounces of water and drink it on an empty stomach. If you don't burp within a few minutes, it can indicate low stomach acid. The empty stomach part is important. And then you can investigate further.

 

[2Cor.12:19]

Hi @2Cor.12:19 -
It's a potentially dangerous condition. He doesn't really explain that in the first article where he just says: For example, if one's potassium drops too low too quickly, it can kill you. He makes it sound like RS is just an unpleasant side effect. He does explain more in the link in the preceding paragraph, but I also urge you to look at the article I linked in my earlier post.

And I still strongly encourage you to look into the possibility of hypochlorydria (low stomach acid), which can be easily fixed if it's a problem. A simple at home test to check for this is to dissolve 1/4 - 1/2 teaspoon of baking soda in 8 ounces of water and drink it on an empty stomach. If you don't burp within a few minutes, it can indicate low stomach acid. The empty the stomach part is important. And then you can investigate further.

@Mary - I have read both of the articles and admit the subject is pretty dang confusing! Lonsdale seems to be saying the temporary worsening of symptoms at the beginning of vitamin therapy is a paradox rather than full blown refeeding syndrome. The Paradox of Modern Vitamin Deficiency, Disease and Therapy. Elsewhere, he makes the distinction between chronic long term malnutrition in America and the kind in malnutrion seen in Bangledesh , Auschwitz, and severe anorexic patients. And though he advises any vitamin therapy should be guided by a knowledgeable physician, the overarching message I'm seeing, is that it's okay to self-medicate because thiamine is safe to take in large doses. - And of course the PubMed article would scare the pants off anyone if it were to apply to everyone, whether they have "high calorie malnutrition" or they're literally starving to death in the traditional sense. Oye! It's enough to tempt me to stick with my one-a-day multiple. LOL.

As for the low stomach acid, I know about that possibility and am pretty sure that's not my case. I once considered taking Betaine HC so I tried this test first: How To Test For Low or High Stomach Acid In Seconds With Apple Cider Vinegar using a TBSP mixed in a cup of water. Felt like drinking sulfuric acid! Took awhile before my stomach stomach stopped burning, so never again. I have a hiatal hernia which was probably caused my pregnancies. At any rate, I don't think low stomach acid is my problem, but thanks so much for thinking of it for me. The Iberogast seems to be working pretty well and is very soothing. I have just a tiny bit of reflux today, but still much improved over the Nexium. So I hope it continues once I'm done with the Rifaximin.

 

[andyguitar]

I have a hiatal hernia

Have any of your medical advisors ever suggested that this might be the cause of some of your symptoms?

 

[Mary]

And though he advises any vitamin therapy should be guided by a knowledgeable physician, the overarching message I'm seeing, is that it's okay to self-medicate because thiamine is safe to take in large doses.

I think thiamine in large doses may be safe for many people. But I think it's a very bad idea for anyone to start out with a large dose of thiamine or any supplement.

100 mg of thiamine helped my energy for a day or so, and then caused severe fatigue due to my phosphorous dropping badly. I was able to manage the low phosphorous because I was able to figure out what had happened. Otherwise I would have had to stop the thiamine. I can only imagine what would have happened if I'd started off with 500 mg or more! My drop in phosphorous would have been extreme and probably scary. But I am up to 400 mg. right now and doing okay, and I still need phosphorous a few times a week.

Someone else on PR had the same reaction. It didn't mean that they didn't need thiamine, probably just the opposite - that they were deficient in it and once they started supplementing with it, they had to be on the lookout for things suggestive of refeeding syndrome, which usually occurs within a few days of starting the supplement.

When I started methylfolate, I think I started with around 1600 mcg., which made me feel good for a day, and then severe fatigue hit again. I knew to watch out for low potassium, and so was able to deal with it. I still have to take extra potassium and it's been 11 years now. But without it I couldn't take the methylfolate.

the whole point of this is not to scare you but to inform you so that if you do try thiamine (or anything else), that it's best to do it carefully and slowly., so that you can manage any reaction you may have.

Not everyone will experience refeeding syndrome with thiamine - I believe that the more deficient one is, the more likely it will be to experience refeeding syndrome.

 

[2Cor.12:19]

Have any of your medical advisors ever suggested that this might be the cause of some of your symptoms?

Yes. My gastro doc. Hiatal hernias can cause GERD and vice versa - found mine doing an endoscopy.

https://www.scholars.northwestern.e...tal-hernia-to-gastroesophageal-reflux-disease

https://www.health.harvard.edu/pain/hiatal-hernia-a-to-z

 

[andyguitar]

Yes. My gastro doc. Hiatal hernias can cause GERD and vice versa -

Any suggestions that it could be treated by surgery, If you were up to having it?

 

[2Cor.12:19]

Any suggestions that it could be treated by surgery, If you were up to having it?

From what I’ve read it’s probably not something I’d want to do unless I couldn’t control the reflux through other means. Chronic uncontrolled reflux can lead to Barrett’s Esophagus which can lead to , though rarely, esophageal cancer.

 

[andyguitar]

Chronic uncontrolled reflux can lead to Barrett’s Esophagus which can lead to , though rarely, esophageal cancer.

Yes I knew someone who had this. Did'nt survive for long.

 

[2Cor.12:19]

I think thiamine in large doses may be safe for many people. But I think it's a very bad idea for anyone to start out with a large dose of thiamine or any supplement.

100 mg of thiamine helped my energy for a day or so, and then caused severe fatigue due to my phosphorous dropping badly. I was able to manage the low phosphorous because I was able to figure out what had happened. Otherwise I would have had to stop the thiamine. I can only imagine what would have happened if I'd started off with 500 mg or more! My drop in phosphorous would have been extreme and probably scary. But I am up to 400 mg. right now and doing okay, and I still need phosphorous a few times a week.

Someone else on PR had the same reaction. It didn't mean that they didn't need thiamine, probably just the opposite - that they were deficient in it and once they started supplementing with it, they had to be on the lookout for things suggestive of refeeding syndrome, which usually occurs within a few days of starting the supplement.

When I started methylfolate, I think I started with around 1600 mcg., which made me feel good for a day, and then severe fatigue hit again. I knew to watch out for low potassium, and so was able to deal with it. I still have to take extra potassium and it's been 11 years now. But without it I couldn't take the methylfolate.

the whole point of this is not to scare you but to inform you so that if you do try thiamine (or anything else), that it's best to do it carefully and slowly., so that you can manage any reaction you may have.

Not everyone will experience refeeding syndrome with thiamine - I believe that the more deficient one is, the more likely it will be to experience refeeding syndrome.

Thanks @Mary - my benofatamine is 300 mg. I’ll get it on Wednesday- I wonder if I can cut it it half...

 

[2Cor.12:19]

Yes I knew someone who had this. Did'nt survive for long.

That’s sad. My great grandfather had it too, but took his life before it did. My mom had Barrett’s but it never became cancer. It has a genetic component so that’s why I was willing to put up with PPI’S for so long. If my GERD can’t ultimately be controlled through these new approaches, I’ll have to resume the PPI’S. But hopefully I won’t have to.

 

[andyguitar]

It has a genetic component so that’s why I was willing to put up with PPI’S for so long.

That's a sensible way of dealing with it. Minimize the risk.

 

[2Cor.12:19]

I came across this new study

Neuroprotective Effects of Thiamine and Precursors with Higher Bioavailability: Focus on Benfotiamine and Dibenzoylthiamine
https://res.mdpi.com/d_attachment/ijms/ijms-22-05418/article_deploy/ijms-22-05418.pdf

I’ve been taking 600 mg benfotiamine (Doctors Choice) for over a month and believe it has improved my energy, cognition, and insomnia. I plan to keep taking it indefinitely. To be fair, I started taking it while doing a 19 day round of rifaximin for SIBO, so I really don’t know how much improvement came from what.
My husband is very healthy, other than chronic insomnia, and started taking 600 mg with me. His insomnia has greatly improved.
I’m hoping in time benfothiamine will improve my Polyneuropathy. I’ll report back in a few months.

 

[ljimbo423]

I’ve been taking 600 mg benfotiamine (Doctors Choice) for over a month and believe it has improved my energy, cognition, and insomnia.

I plan to keep taking it indefinitely. To be fair, I started taking it while doing a 19 day round of rifaximin for SIBO, so I really don’t know how much improvement came from what.

My husband is very healthy, other than chronic insomnia, and started taking 600 mg with me. His insomnia has greatly improved.

I take just 100 mg a day of thiamine. It has drastically improved my insomnia, to where it's no longer a problem. It also gives me a big boost in energy, although it's short lived, so I take it in 3 small doses throughout the day.