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Terrible Neurological Symptoms


HectorConvector

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knitty kitty Grand Master

Hurrah!  Happy Dance!!!   So excited to hear you're giving Benfotiamine a try!  

I've been there, where the low carb AIP diet was an improvement, but just not quite resolving symptoms.  But the addition of Benfotiamine really accelerated my health improvement!  

Please keep posting about your experience with Benfotiamine, maybe in a new thread.  

Thanks!


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Scott Adams Grand Master
2 hours ago, knitty kitty said:

I respectfully disagree, @Scott Adams.  

Thiamine deficiency (and deficiencies in other B vitamins) can cause unintentional weight loss.  The body will use stored fat and muscle to provide energy in thiamine deficiency.  This results in muscle wasting, fat loss, fatigue, and difficulty putting on muscle mass.  Using stored fat and muscle for energy requires less thiamine than the amount of thiamine required to process carbohydrates. 

Thiamine deficiency causes gastrointestinal Beriberi, a localized thiamine deficiency in the digestive tract, which results in dysbiosis, inflammation, and abdominal pain.  Carbohydrates can remain undigested in the intestinal system, which bacteria feed on, encouraging SIBO, and prompting dysbiosis, leaky gut, and inflammation.  Following a low carbohydrate Keto diet, like the AutoImmune Protocol diet, can help because it removes excess carbohydrates that the bacteria feed on.  SIBO can cause weight gain due to inflammational edema of the intestines (water retention in the tissues of the intestines), gas, and slowed transit times.  SIBO bacteria can absorb nutrients from your food before you can, resulting in additional deficiencies of other B vitamins and nutrients.  

Thiamine deficiency is corrected with high dose Thiamine Hydrochloride, Benfotiamine and/or Thiamine TTFD (tetrahydrofurfuryl disulfide).  High dose thiamine in the form Benfotiamine has been shown to promote intestinal healing.  It improves "leaky gut".  High dose Benfotiamine will improve the gut microbiome in favor of beneficial bacteria.  Thiamine TTFD is beneficial for neurological issues.  Thiamine TTFD improves brain function and is beneficial for mental health issues such as depression and anxiety, and other neurological problems like Ataxia and Brain Fog.  

 Methylated (activated) B Complex vitamins help correct Thiamine deficiency because all eight B vitamins work together.  Vitamin C and the four fat soluble vitamins (A, D, E, and K) are needed as well.  Minerals like Magnesium, Calcium, Iron,  Potassium, and others may need to be supplemented as well.  Thiamine and Magnesium make life sustaining enzymes together.  

Supplementing with high doses of Thiamine and other water soluble B vitamins will lower pain and inflammation, improve fatigue, improve muscle mass gain, as well as regulate the intestinal microbiome! 

So, @Stegosaurus, you can get healthier while improving gut dysbiosis at the same time!

References:

Thiamine, gastrointestinal beriberi and acetylcholine signaling

https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/

Dietary Vitamin B1 Intake Influences Gut Microbial Community and the Consequent Production of Short-Chain Fatty Acids

https://pmc.ncbi.nlm.nih.gov/articles/PMC9147846/

I am not sure I follow you here...exactly what part of my post are you disagreeing with?

knitty kitty Grand Master
(edited)
6 hours ago, Scott Adams said:

The part about needing to get stronger before tackling the dysbiosis also makes a lot of sense, and I hope the progress continues steadily for you.

You can get healthier and stronger while improving gut dysbiosis at the same time! 

Edited by knitty kitty
Typo correction
knitty kitty Grand Master
On 4/14/2026 at 6:48 PM, Sue7171 said:

I had lyme disease for about 14 years and was also diagnosed with celiac disease about midway through.  I had bad leaky gut food and chemical sensitivity like crazy dental issues I had to go on a really strict diet for 4 years to heal my gut and see a lyme Dr to heal the lyme disease 

Both sides of my family are celiac 

Hi, @Sue7171,

I thought you might be interested in this article about Lyme disease and the discussion after the article.  

I found this article enlightening.  The finding that not only can alpha gal be problematic, but advantageous infection with Staph aureus can be problematic.  

The Acari Hypothesis, VII: accounting for the comorbidity of allergy with other contemporary medical conditions, especially metabolic syndrome

https://pmc.ncbi.nlm.nih.gov/articles/PMC11983536/

 

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    • glucel
      Thanks to everybody for your help. I reread the dr's notes from the biopsy procedure and it seems I had worse than atrofied villi. It was termed flattened mucosa. So while iron ferratin levels are normal my bet is, as kitty alluded to, iron not getting into cells. I have dr appointment next mo but don't hold out a lot of hope, There is strong correlation of low red blood cells and insomnia so at least I finally solved that one after few yrs of being mislead. I intend to take stop taking 100 mg b1 at noon time and start 150 mg benfotiamin. I may or may not add the the 100 mg b1evening meal. BTW, last night had 1/3 lb beef. potato then 2 bowls cereal and an apple later in the eve. I generally do my areobics before supper so maybe that contributes to the hunger.  
    • knitty kitty
      I have osteoporosis and have crushed three vertebrae.  I supplement with Lysine, Tryptophan, threonine, calcium, Boron, Vitamins D, A, and K, and the B vitamins (folate, B12, and Thiamine B1 especially for bone health).   I tried Fosomax, but it tore up my insides.  I prefer the supplements.  I feel better and my bones feel stronger.   References: A composite protein enriched with threonine, lysine, and tryptophan improves osteoporosis by modulating the composition and metabolism of the gut microbiota https://pubmed.ncbi.nlm.nih.gov/41915427/
    • knitty kitty
      @Aileen Cregan, I was put on high blood pressure medication, too. But I was able to correct my high blood pressure by supplementing with Thiamine Vitamin B 1.  I am no longer on high blood pressure medication.  I feel much better without the medication. I continue to supplement Thiamine in the form Benfotiamine.   The particular high blood pressure medication I took was Norvasc (amlodipine), which causes thiamine deficiency by blocking thiamine transporters so that thiamine cannot enter cells.  Benfotiamine can get into cells by merging with the cell membrane, thus bypassing nonfunctional thiamine transporters.   Indapamide also blocks thiamine transporters! The use of this type of medications that block thiamine precipitated Wernickes Encephalopathy.  My doctors did not recognize the connection to Thiamine deficiency.  I nearly died.   Talk to your doctor and dietician about supplementing with Benfotiamine, a fat soluble form of thiamine that bypasses thiamine transporters.  Ask for an Erythrocyte Transketolace Activity Assay to check your thiamine levels asap.  Routine blood tests for thiamine are not an accurate measure of  thiamine in the body.   Absorption of essential vitamins like Thiamine is altered in Celiac Disease due to damaged villi, inflammation and dysbiosis.  The Gluten Free diet can be lacking in vitamins and minerals.  Discuss supplementing with all the eight B vitamins,  the four fat soluble vitamins and necessary minerals. Please keep us posted on your progress! References: Drug-nutrient interactions: discovering prescription drug inhibitors of the thiamine transporter ThTR-2 (SLC19A3) https://pubmed.ncbi.nlm.nih.gov/31764942/ The Pivotal Role of Thiamine Supplementation in Counteracting Cardiometabolic Dysfunctions Associated with Thiamine Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC11988323/
    • knitty kitty
      Hi, @Sue7171, I thought you might be interested in this article about Lyme disease and the discussion after the article.   I found this article enlightening.  The finding that not only can alpha gal be problematic, but advantageous infection with Staph aureus can be problematic.   The Acari Hypothesis, VII: accounting for the comorbidity of allergy with other contemporary medical conditions, especially metabolic syndrome https://pmc.ncbi.nlm.nih.gov/articles/PMC11983536/  
    • gregoryC
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