Mild guillaine barre syndrome

[Vicrob]

I have ataxia (lesions on cerebellum) and tested positive for 2 genes for gluten intolerance. I suffer from peripheral neuropathy and had noticed that covid jab intensified the neuropathy as it did when I had covid. I’ve been gluten-free for 18m. I recently had the over 65 flu jab. I became very ill and over 2 weeks the neuropathy crept up my legs, making my muscles spasm and cramp. I have ongoing swallowing and slurring issues and cannot walk far. A nerve (EMG) study has confirmed mild guillaine barre probably caused by the flu jab. I feel this is linked to my condition and excavated my PN. This year in U.K. the flu jab is aventuated which means it’s 4 times stronger. I have had the flu jab before with no problems. I am in recovery but feel very set back after being so careful to be gluten-free. There is no after care or help with what’s happened to me. I feel angry and depressed. 

[knitty kitty]

@Vicrob,

Have you been tested for a thiamine deficiency? 

I have two genes for Celiac Disease.  I developed vitamin and mineral deficiencies because Celiac Disease damages the small intestine so that these nutrients cannot be absorbed.  

I have had thiamine deficiency.  I had ataxia from Thiamine deficiency.  I also get gluten ataxia if exposed to gluten.  Thiamine deficiency will cause lesions on the brain which can be seen in MRIs. 

Thiamine deficiency causes peripheral neuropathy.  Deficiencies in some of the other B vitamins can cause neuropathy as well. 

My neuropathy got worse after vaccination.  Thiamine is the energy producing vitamin needed in every cell of our bodies.  We need more energy when we are sick fighting an infection like Covid or a cold or the flu.  Vaccines stimulate our immune system just like when we have the actual infection.  Our thiamine levels can become insufficient when our immune system is active. 

My neuropathy crept up my legs to my thighs and hips.  I could not rise from a squat.  Inability to rise from a squat is a test used to detect thiamine deficiency.  Thiamine deficiency shows up in nerve conduction studies the same as in Guillian-Barre Syndrome.

I had muscle cramps and spasms.  I took magnesium glycinate.  Thiamine and magnesium make enzymes together that are needed for proper muscle relaxation and contraction.  

I had difficulty swallowing (dysphagia).  I started stuttering, then later slurring.  My voice became very hoarse.  Sometimes I couldn't talk at all.  These are thiamine deficiency symptoms.

I had difficulty walking.  My stance widened and I wobbled when I walked.  I couldn't walk far without becoming extremely fatigued.

I was diagnosed with Non-Alcoholic Fatty Liver Disease.  NAFLD is caused by Thiamine deficiency.

My doctors scratched their heads, shrugged their shoulders, and walked away.  My doctors did not recognize Thiamine deficiency nor other nutritional deficiencies.  Nutritional deficiencies do happen in Celiac Disease.  Thiamine deficiency shows up first because our bodies need so much of it every day.  If we can't absorb it, our bodies start malfunctioning.

I was angry and depressed.  Thiamine deficiency causes depression and irritability.  

I depended on what I learned at university to put the puzzle pieces together.  I've earned a degree in microbiology.  I've studied nutrition.  

I started taking Thiamine supplements in high doses needed to correct Thiamine deficiency.  I had improvement within an hour!  Miracle of miracles!  

Thiamine is water soluble, nontoxic and harmless even in high doses.  The World Health Organization recommends giving high doses of Thiamine and looking for improvement in order to determine a thiamine deficiency.  Thiamine deficiency needs to be corrected as quickly as possible to avoid permanent damage.   Because Thiamine is easily excreted and nontoxic, there is no harm to try Thiamine and see if there are health improvements.  Most cases of Thiamine deficiency are diagnosed postmortem.  

I take Allithiamine (Tetrahydrofurfuryl disulfide - TTFD) because it crosses the blood brain barrier and improves brain function much better than Thiamine Hydrochloride.  I also take Magnesium threonate as it improves brain function as well.

I do hope you will give Allithiamine a try.  No harm, no foul if it doesn't work, but what a difference when it does!  

References:

Dry Beriberi Due to Thiamine Deficiency Associated with Peripheral Neuropathy and Wernicke's Encephalopathy Mimicking Guillain-Barré syndrome: A Case Report and Review of the Literature

https://pubmed.ncbi.nlm.nih.gov/30862772/

And...

https://www.hormonesmatter.com/covid-notes-vertigo-and-guillain-barre-after-vaccination/

 

And...Thiamine deficiency is a differential diagnosis in GBS

Altered mental status in “Guillain‐Barré syndrome” –a noteworthy clinical clue

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7732251/

And...

Beriberi Neuropathy Mimicking Guillian-Barre Syndrome in a Teenager With Food Restriction: A Case Report

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8856646/

And...

Thiamine deficiency disorders: a clinical perspective

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8451766/

Hope this helps! 

[Vicrob]

Oh thank you so much. My neurologist at hospital said she had tested for everything and I wasn’t to suggest anything else! I also have had NAFLD on and off over the years.  Since going gluten-free 18 months ago it’s normalised, but it reoccurred when I had covid. I will  start the thiamine you recommend tomorrow. I have just bought magnesium and B12. I’m so worried about my speech and swallowing I thought I had MS but my MRI didn’t show it. The spectosrophy showed cerebellum lesions and  I have the 2 genes but no gut issues.  My gait and balance are very poor currently. Even worse since the flu jab. My muscles flutter and ache. The fatigue is chronic, my wee and poo functions getting better, but the neuropathy still awful. In addition my vision is really blurred. Could this also be thiamine?  I will post again if the thiamine helps. I don’t feel that my symptoms are looked at as a whole, only fragmentations. 

[knitty kitty]

You are very welcome.  

Yes, doctors don't treat the body as a whole.  Thiamine deficiency affects many body systems, many organs, but the body needs to be looked as as a whole, not just isolated parts.  

Yes, thiamine deficiency can affect the eyes and causes vision problems, blurry vision, and optic nerve damage.  I had vision problems, too.  

Yes, my NAFLD normalized on Thiamine as well.  

A twenty percent increase in dietary Thiamine produces an eighty percent improvement of brain function.  This explains why Thiamine deficiency symptoms can wax and wane mysteriously.  The more Thiamine absorbed, the more symptoms improve.  But another stressor or higher demand for Thiamine can cause symptoms to return.  There's that fine line between sufficiency and subclinical thiamine deficiency.

Allithiamine (TTFD) works best and fastest for neurological symptoms, but Thiamine Hydrochloride and Benfotiamine also work.  

Get a B Complex supplement that contains all eight B vitamins.  B12 is Cobalamine, just one of the eight.  We need Riboflavin B2, Niacin B3, Pantothetic B 5, Biotin B7, Pyridoxine B6, and Folate B 9 as well as Thiamine B 1.  

You may be interested in watching Elliot Overton's videos...(he follows Dr. Derrick Lonsdale's Thiamine protocols)...

   

 

 

Yes, please do keep me posted on your progress.  I'm happy to help with your questions.  After my struggle, I'm very thankful I can help others.  

 

[Raquel2021]

16 hours ago, Vicrob said:

I have ataxia (lesions on cerebellum) and tested positive for 2 genes for gluten intolerance. I suffer from peripheral neuropathy and had noticed that covid jab intensified the neuropathy as it did when I had covid. I’ve been gluten-free for 18m. I recently had the over 65 flu jab. I became very ill and over 2 weeks the neuropathy crept up my legs, making my muscles spasm and cramp. I have ongoing swallowing and slurring issues and cannot walk far. A nerve (EMG) study has confirmed mild guillaine barre probably caused by the flu jab. I feel this is linked to my condition and excavated my PN. This year in U.K. the flu jab is aventuated which means it’s 4 times stronger. I have had the flu jab before with no problems. I am in recovery but feel very set back after being so careful to be gluten-free. There is no after care or help with what’s happened to me. I feel angry and depressed. 

I am very sorry to hear you are going through this. I had my very first neurological symptoms after taking the second shot of the Moderna.  It was a very scary experience for me. That was two years ago and I am still healing.  Doctors have no answers for me but experienced numbness and tingling on the face arms and Legs after the vaccine. I will never ever try getting the covid vaccine or the flu shot again due to the experience.  My Dr thought I had Ms but neurologist thinks my issues are related to celiac. I hope you can recover soon. Taking a b12 supplement has helped a bit and avoiding iodized salt. Also following a super clean paleo style diet.

[Vicrob]

Thank you. I’m wondering if there’s a link to these vaccines and ataxia/neuropathy - could it bring on a crisis? It’s currently recommended to have the flu vaccine if you have an autoimmune condition, I just know my nervous system went bonkers and I certainly won’t have a vaccine ever again. 

[knitty kitty]

Yes, there's a link between vaccines and ataxia/neuropathy.

Vaccines put a demand on the immune system.  The immune system has to work hard to produce antibodies against whatever disease is in the vaccine.  If the body is already low in Thiamine, the immune response caused by vaccinations can precipitate a thiamine deficiency.

We need more Thiamine than usual when we are physically ill, emotionally traumatized or stressed, and when we are physically active in hot weather.  If our bodies cannot meet that extra demand for Thiamine by using up stored thiamine, we start getting thiamine insufficiency symptoms.  Our bodies can run out of stored thiamine in as little as three days.

Our brains use as much Thiamine just sitting and thinking at a desk job every day as a runner's muscles use running a marathon.  Nerves use lots of Thiamine to conduct electrical impulses to the brain.  Thiamine is also needed to maintain the myelin sheath around the nerve cells.  The myelin sheath is like the protective plastic coating covering electrical cords.  If there's a break in that covering, electrical impulses short out, just like frayed electrical cords don't allow electricity to operate the electrical appliance.   In our bodies, this results in neuropathy.  Nerves need Thiamine, Cobalamine B12, and Pyridoxine B6, magnesium and calcium.  

Pyridoxine B 6 needs Riboflavin B 2.  Thiamine needs magnesium and Niacin.  Cobalamine B12 needs Folate B 9.  It is IMPORTANT to take ALL Eight B vitamins.  Taking just one B vitamin can preciptate deficiencies in the other B vitamins.  Taking just B12 by itself can precipitate a Folate deficiency.  Take all eight B vitamins together.  

There are Sulfur containing components in some vaccines.  Sulfite preservatives (bisulfites, metabisulfites) are used to preserve vaccines.  Sulfites deactivate Thiamine.  Many prescription medications contain Sulfites and cause Thiamine deficiency.  Metformin, Proton Pump Inhibitors, thiazide diuretics, ace inhibitors, and some antidepressants cause Thiamine deficiency.

  I had a flu shot and became very ill from this type of reaction.  I have Sulfite Hypersensitivity Type Four reaction to Sulfites in prescription drugs.  (Sulfite Hypersensitivity occurs at a higher in Celiac Disease people than nonCeliac people.  In fact, Celiac is classified as a type four hypersensitivity reaction.)  Needless to say, I haven't had a vaccine since.  

I avoid foods high in Sulfites such as preserved/smoked meats, crustaceans and seafood.  I even react to foods packaged in plastics that are infused with Sulfites.  Tins of canned foods have this sulfite infused plastic linings in the cans.  Packaged ready-made bakery products, like gluten free cookies, use this sulfite infused packaging, too.  Yes, a clean Paleo diet is extremely helpful and important.  A nutritionist can help us choose a nutritionally dense diet.  Supplementing with vitamins and minerals helps while we are healing.

Several B vitamins have been shown to prevent the spike protein of the Covid virus from entering and infecting cells.  Certain B vitamins and Vitamin C and Vitamin D are very helpful in fighting Covid and other infections.  Thiamine has been shown to help with long Covid symptoms, too.

Keep us posted!

References:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6930825/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8294980/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9640828/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7428453/

 

[Vicrob]

I took the thiamine last night along with B complex and magnesium. My head today is very thick but I had a tooth extraction yesterday which always causes me huge stress. I took iprobrufen and paracetamol to cover the tooth pain. The main reason I’m writing is to say is my neuropathy is minimal today and tonight. I did note that you can feel worse before you get better so I’m thinking the headache could be that. I can’t quite believe the neuropathy is less (it’s not pinging around like normal) and will continue to monitor - thank you 

[knitty kitty]

I'm so glad to hear your neuropathy is improving!  

Dental visits are a huge stress!  Thiamine helps with headaches.  A combination of Thiamine, Cobalamine and Pyridoxine B6 work to relieve pain as well!  

You may feel worse before feeling better.... it's like starting an automobile that hasn't been cranked for a while, a couple of backfires to blow out the cobwebs, and you'll be off and running.  

Which kind of Thiamine are you taking?  Thiamine Hydrochloride, Benfotiamine or Allithiamine?  I take all three kinds.  Taking a little more Thiamine may help with the headache.  I found taking several small doses throughout the day beneficial.  

Keep us posted!  

[Vicrob]

On 12/5/2023 at 1:10 AM, knitty kitty said:

Yes, there's a link between vaccines and ataxia/neuropathy.

Vaccines put a demand on the immune system.  The immune system has to work hard to produce antibodies against whatever disease is in the vaccine.  If the body is already low in Thiamine, the immune response caused by vaccinations can precipitate a thiamine deficiency.

We need more Thiamine than usual when we are physically ill, emotionally traumatized or stressed, and when we are physically active in hot weather.  If our bodies cannot meet that extra demand for Thiamine by using up stored thiamine, we start getting thiamine insufficiency symptoms.  Our bodies can run out of stored thiamine in as little as three days.

Our brains use as much Thiamine just sitting and thinking at a desk job every day as a runner's muscles use running a marathon.  Nerves use lots of Thiamine to conduct electrical impulses to the brain.  Thiamine is also needed to maintain the myelin sheath around the nerve cells.  The myelin sheath is like the protective plastic coating covering electrical cords.  If there's a break in that covering, electrical impulses short out, just like frayed electrical cords don't allow electricity to operate the electrical appliance.   In our bodies, this results in neuropathy.  Nerves need Thiamine, Cobalamine B12, and Pyridoxine B6, magnesium and calcium.  

Pyridoxine B 6 needs Riboflavin B 2.  Thiamine needs magnesium and Niacin.  Cobalamine B12 needs Folate B 9.  It is IMPORTANT to take ALL Eight B vitamins.  Taking just one B vitamin can preciptate deficiencies in the other B vitamins.  Taking just B12 by itself can precipitate a Folate deficiency.  Take all eight B vitamins together.  

There are Sulfur containing components in some vaccines.  Sulfite preservatives (bisulfites, metabisulfites) are used to preserve vaccines.  Sulfites deactivate Thiamine.  Many prescription medications contain Sulfites and cause Thiamine deficiency.  Metformin, Proton Pump Inhibitors, thiazide diuretics, ace inhibitors, and some antidepressants cause Thiamine deficiency.

  I had a flu shot and became very ill from this type of reaction.  I have Sulfite Hypersensitivity Type Four reaction to Sulfites in prescription drugs.  (Sulfite Hypersensitivity occurs at a higher in Celiac Disease people than nonCeliac people.  In fact, Celiac is classified as a type four hypersensitivity reaction.)  Needless to say, I haven't had a vaccine since.  

I avoid foods high in Sulfites such as preserved/smoked meats, crustaceans and seafood.  I even react to foods packaged in plastics that are infused with Sulfites.  Tins of canned foods have this sulfite infused plastic linings in the cans.  Packaged ready-made bakery products, like gluten free cookies, use this sulfite infused packaging, too.  Yes, a clean Paleo diet is extremely helpful and important.  A nutritionist can help us choose a nutritionally dense diet.  Supplementing with vitamins and minerals helps while we are healing.

Several B vitamins have been shown to prevent the spike protein of the Covid virus from entering and infecting cells.  Certain B vitamins and Vitamin C and Vitamin D are very helpful in fighting Covid and other infections.  Thiamine has been shown to help with long Covid symptoms, too.

Keep us posted!

References:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6930825/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8294980/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9640828/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7428453/

 

Hi. I’ve been taking thiamine, B complex and Magnesium for 3 weeks now. I’ve been long haul to the Caribbean! I have very little neuropathy, only pings when I’m tired!!! I can’t believe it after all this time. I’m recovering from mild G.Barre and still awaiting nerve study results. My speech is almost ok and swallowing almost normal. Legs ache when I walk and arms often heavy, but so much better! I cannot thank you enough. I’m going to tell my neurologist and will let you know what she says. My mood is better and I’m not as angry (cat is happier) 

[knitty kitty]

@Vicrob,

I'm doing a happy dance!  

Love hearing about your improvements with Thiamine!  

You can always increase your Thiamine dose gradually.  As long as you're seeing improvement, increasing thiamine doses is safe and helps resolve symptoms.  Small doses throughout the day helps, especially if physically active. 

Yes, Thiamine does relieve anxiety and depression!    

I would very much like to hear what your neurologist says!  

Thanks so much for letting us know of your results!  

[Linda68]

After 32 years of misdiagnosis for my gut issues, in Jan 2001 I had more severe symptoms of GBS than you described— same symptoms but to a greater extent. Also after a Flu vaccine, standard one. I was treated by neurologist with high dose oral Prednisone beginning with 80 mg. It stopped the progression of damage but did nothing for the damage. Physical and Occupational Therapies helped as is did RX meds and supplements for the nerve pain and full body muscle spasms by my Family Dr to improve quality of life. 
 

I read the Medical Journals after being sent to a large University Neurology Clinic and no answers despite some odd bloodwork. One of the antibodies tests I had 10 times top of normal was related to Celiac Disease. My Family Doctor connected me with a new Neurologist. I brought labs and journal articles. He walked me down the hall to Gastroenterology Dr’s office. I was finally diagnosed with Celiac Disease. We had hoped that my gluten free diet would help neurological damage. It did not. 
 

Several years later, Cornell Medical Peripheral Neuropathy Clinic Drs published a study showing that patients who had CIDP (linked with GBS) and no known triggers were tested for Celiac Disease and it was much more than typical 1% who tested positive for Celiac Disease. This made the link between Celiac Disease and CIDP. It was 5 years after my GBS from flu vaccine that I went to NYC and had a full day of testing with Dr Latov. One of Drs who contributed to the published study. I was later diagnosed with CIDP. GBS is acute illness. CIDP is related autoimmune disease. Ask your Neurologist about CIDP. After my diagnosis, looking back, we found the slow CIDP symptoms until GBS caused significant damage. There are long term treatments to repair damage. 

[knitty kitty]

@Linda68,

Welcome to the forum!

That article sounds interesting.  Can you post a link?

 Were you checked for nutritional deficiencies when you were diagnosed for Celiac Disease?  Do you currently take any nutritional supplements, vitamins, and minerals?

Celiac Disease is often precipitated by an infection or a vaccination which depletes thiamine causing a cascade of health problems as thiamine deficiency affects the organs and tissues.

Have you tried high dose Thiamine?  Thiamine is water soluble and easily excreted if not needed.  No harm, no foul if tried.  

Doctors don't recognize thiamine deficiency outside of alcoholism and Warnicke-Korsakoff Syndrome, but Thiamine deficiency can present differently.   

References:

Dry Beriberi Manifesting as Acute Inflammatory Demyelinating Polyneuropathy in a Patient With Decompensated Alcohol-Induced Cirrhosis

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7707918/

And...

Nutritional Neuropathies

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4199287/

[Vicrob]

On 12/21/2023 at 3:53 AM, knitty kitty said:

@Vicrob,

I'm doing a happy dance!  

Love hearing about your improvements with Thiamine!  

You can always increase your Thiamine dose gradually.  As long as you're seeing improvement, increasing thiamine doses is safe and helps resolve symptoms.  Small doses throughout the day helps, especially if physically active. 

Yes, Thiamine does relieve anxiety and depression!    

I would very much like to hear what your neurologist says!  

Thanks so much for letting us know of your results!  

Hi. An update. Although the doctor doing the EMG nerve study said he thought I was recovering from ‘a virus’ my results have come back negative. There are also no traces of gluten in my bloods. I had a call from the ataxia nurse who said my lesions on cellebrum are minimal and I shouldn’t be feeling so poorly. The thiamine had stopped the neuropathy, she was doubtful about that. My legs and arms are weak and heavy still and I’m slurring worse. Swallowing same. It’s now 12 weeks since my flu jab reaction. The nurse went back over all my LFTs (the last one being fine) and yet again I was asked about drinking alcohol (which I haven’t for years as it makes me very poorly) my sister is same. I suggested that the LFT I had over a year ago was skewed as I had covid and didn’t realise. She says that’s doubtful. She then asked about mental health. This has made me despair. I know I cannot walk far and am terribly fatigued and my speech is getting worse. I also have awful post nasal drip and a very itchy back! This doesn’t seem to register at all but I believe it’s another symptom. I’ve a call with my GP next week to ask if I’m low on vitamin D ( I have been before and felt awful) maybe I don’t absorb it. I’m thinking about paying for a homeopathic doctor as I’m getting nowhere. There is something going on with me and I’m not nuts. Sorry for the rant. Thank goodness for the thiamine and all the vitamins I now take. 

[knitty kitty]

@Vicrob,

Infuriating!  It's Thiamine deficiency outside of alcoholism!  Doctors think inside the box!  Same thing happened to me.  I kept getting questioned about alcoholism and mental health.  I'm so sorry you've been put through this.  I understand and commiserate with you.  {{{Hugs}}}

Which vitamins and minerals and any supplements are you taking?  

What kinds of foods are you eating?

How much thiamine are you taking?  What form of Thiamine are you taking?  Are you increasing your dose?  When symptoms worsen, increase the dose.  I had to increase my dose to 2000 mg at some points, especially if I reacted to some food sensitivity.

The post nasal drip and itchy back sounds like a histamine reaction.  Are you eating low histamine foods?  B12 and Pyridoxine B 6 help breakdown histamine.  A digestive enzyme, DAO can help lower histamine from foods.  

Sorry for all the questions.  Let's see what can be done to get you feeling better! 

[Vicrob]

On 12/21/2023 at 3:53 AM, knitty kitty said:

@Vicrob,

I'm doing a happy dance!  

Love hearing about your improvements with Thiamine!  

You can always increase your Thiamine dose gradually.  As long as you're seeing improvement, increasing thiamine doses is safe and helps resolve symptoms.  Small doses throughout the day helps, especially if physically active. 

Yes, Thiamine does relieve anxiety and depression!    

I would very much like to hear what your neurologist says!  

Thanks so much for letting us know of your results!  

Hi. An update. Although the doctor doing the EMG nerve study said he thought I was recovering from ‘a virus’ my results have come back negative. There are also no traces of gluten in my bloods. I had a call from the ataxia nurse who said my lesions on cellebrum are minimal and I shouldn’t be feeling so poorly. The thiamine had stopped the neuropathy, she was doubtful about that. My legs and arms are weak and heavy still and I’m slurring worse. Swallowing same. It’s now 12 weeks since my flu jab reaction. The nurse went back over all my LFTs (the last one being fine) and yet again I was asked about drinking alcohol (which I haven’t for years as it makes me very poorly) my sister is same. I suggested that the LFT I had over a year ago was skewed as I had covid and didn’t realise. She says that’s doubtful. She then asked about mental health. This has made me despair. I know I cannot walk far and am terribly fatigued and my speech is getting worse. I also have awful post nasal drip and a very itchy back! This doesn’t seem to register at all but I believe it’s another symptom. I’ve a call with my GP next week to ask if I’m low on vitamin D ( I have been before and felt awful) maybe I don’t absorb it. I’m thinking about paying for a homeopathic doctor as I’m getting nowhere. There is something going on with me and I’m not nuts. Sorry for the rant. Thank goodness for the thiamine and all the vitamins I now take. 

[knitty kitty]

Try clearing the editor before replying...

[Vicrob]

29 minutes ago, knitty kitty said:

@Vicrob,

Infuriating!  It's Thiamine deficiency outside of alcoholism!  Doctors think inside the box!  Same thing happened to me.  I kept getting questioned about alcoholism and mental health.  I'm so sorry you've been put through this.  I understand and commiserate with you.  {{{Hugs}}}

Which vitamins and minerals and any supplements are you taking?  

What kinds of foods are you eating?

How much thiamine are you taking?  What form of Thiamine are you taking?  Are you increasing your dose?  When symptoms worsen, increase the dose.  I had to increase my dose to 2000 mg at some points, especially if I reacted to some food sensitivity.

The post nasal drip and itchy back sounds like a histamine reaction.  Are you eating low histamine foods?  B12 and Pyridoxine B 6 help breakdown histamine.  A digestive enzyme, DAO can help lower histamine from foods.  

Sorry for all the questions.  Let's see what can be done to get you feeling better! 

Thank you so much and yes!!! The doc prescribed an antihistamine for the nasal drip - which has no effect and I’ve now linked the itching to around then. I’m taking daily : 

magnedium citrate 300 mg, vitamin B complex, thiamine monomitrate 200mg, B12 500mg, A-Z multi vits with minerals 

I supppse there’s a low dose of D in the multi vits but if I’m very low, not enough. I’ll increase the thiamine now and stop the nasal antihistamine. I’m wondering if the nasal drip is an allergy and thought the homeopathic doctor maybe help? It’s expensive but I’m fed up. I can either buy D vits or ask for a blood check ? I thought the Caribbean sun would have worked but maybe I don’t absorb. I did have a few gut symptoms when I was tested for celiac but negative due to me having taken myself off gluten. I couldn’t stand the migraines. I’ve not had one since!!! 

 

 

 

[knitty kitty]

Egads!  No wonder!

Thiamine Mononitrate is NOT a good type of Thiamine to use.  The body has difficulty absorbing it and it's hard for the body to utilize. 

Thiamine mononitrate is used in supplements and processed foods because it is shelf stable, it won't break down while sitting on a shelf in the grocery store, and of minimum cost.  The body absorbs less than thirty percent of Thiamine mononitrate.

Benfotiamine and Allithiamine are much better forms that the body can use.  These forms can cross the blood brain barrier easily and improve brain function which will improve your symptoms. 

Thiamine Hydrochloride is another acceptable form of Thiamine.  But Benfotiamine and Allithiamine improve brain function better.  

A minimum of five hundred mgs a day should be taken.  When symptoms stop improving, increase the dosage again.  If you feel yucky after increasing doses, go back to previous dose, then increase dose in smaller increments.  

I am so sorry that you didn't understand which forms of Thiamine are best to use.  

[Vicrob]

7 minutes ago, knitty kitty said:

Egads!  No wonder!

Thiamine Mononitrate is NOT a good type of Thiamine to use.  The body has difficulty absorbing it and it's hard for the body to utilize. 

Thiamine mononitrate is used in supplements and processed foods because it is shelf stable, it won't break down while sitting on a shelf in the grocery store, and of minimum cost.  The body absorbs less than thirty percent of Thiamine mononitrate.

Benfotiamine and Allithiamine are much better forms that the body can use.  These forms can cross the blood brain barrier easily and improve brain function which will improve your symptoms. 

Thiamine Hydrochloride is another acceptable form of Thiamine.  But Benfotiamine and Allithiamine improve brain function better.  

A minimum of five hundred mgs a day should be taken.  When symptoms stop improving, increase the dosage again.  If you feel yucky after increasing doses, go back to previous dose, then increase dose in smaller increments.  

I am so sorry that you didn't understand which forms of Thiamine are best to use.  

I did try to get the one you suggested but unable to source it. I’ll try on line now thanks. 

[knitty kitty]

I would love to "transporter" you some like on Star Trek...

P.S.  divide your dose into 300 - 500 mg doses throughout the day with meals or snacks.

Edited January 13, 2024 by knitty kitty
Added post script

[Vicrob]

18 minutes ago, knitty kitty said:

I would love to "transporter" you some like on Star Trek...

P.S.  divide your dose into 300 - 500 mg doses throughout the day with meals or snacks.

Ok the correct one will be with me in 3 days. I’ll update. I do think it’s working though - the wrong one! I’ve ordered 120 x 300 mg tabs of bemfotiamine. Was pricey but I don’t mind - thank you 

[knitty kitty]

Excellent!  I'm on pins and needles waiting to hear how you feel with Benfotiamine!  

[Vicrob]

5 hours ago, knitty kitty said:

@Vicrob,

Infuriating!  It's Thiamine deficiency outside of alcoholism!  Doctors think inside the box!  Same thing happened to me.  I kept getting questioned about alcoholism and mental health.  I'm so sorry you've been put through this.  I understand and commiserate with you.  {{{Hugs}}}

Which vitamins and minerals and any supplements are you taking?  

What kinds of foods are you eating?

How much thiamine are you taking?  What form of Thiamine are you taking?  Are you increasing your dose?  When symptoms worsen, increase the dose.  I had to increase my dose to 2000 mg at some points, especially if I reacted to some food sensitivity.

The post nasal drip and itchy back sounds like a histamine reaction.  Are you eating low histamine foods?  B12 and Pyridoxine B 6 help breakdown histamine.  A digestive enzyme, DAO can help lower histamine from foods.  

Sorry for all the questions.  Let's see what can be done to get you feeling better! 

 

[Vicrob]

Hi. I forgot to add what foods I’m eating. 
Eggs, butter, milk (often almond) gluten-free bread and crackers, chicken, meat, all veg, lentils, rice, potatoes, fish,  gluten-free sausage, chocolate, Greek yogurt, rice pudding, all fruit and cheeses. I’m wondering about dairy and if it could be causing the post nasal drip. I don’t eat pre packaged foods or meats. Slowly, slowly. ….