Mild guillaine barre syndrome

[knitty kitty]

Yes, you should try eliminating dairy for a while and see if you feel better.  

Some people develop lactose intolerance while others begin to react to casein, the protein in dairy.  

[Linda68]

On 12/29/2023 at 9:06 PM, Linda68 said:

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. 

 

On 12/29/2023 at 9:57 PM, knitty kitty said:

@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/

 

[Linda68]

On 12/29/2023 at 9:57 PM, knitty kitty said:

@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/

My living in US might also change my treatments.

I am on several different supplements for my GBS/CIDP prescribed by my newest neurologist who has several other CIDP patients for more than a decade which are not related to my long term vitamin and mineral deficiencies that I take too for 20+ years now. I have been on IgG infusions for 17 1/2 years. It took 5 years for me to get the proper CIDP diagnosis after skin punch biopsies proved my peripheral sensory neuropathy for 20+ years. I too was told early MS as I mentioned in previous post.

I also have autonomic nervous system damage since 20+ years. I actually had mild CIDP symptoms before I had severe GBS from flu vaccine. (For individuals who had reactions to COVID vaccines, COVID is a flu so it makes sense. Most should not if they get newer type of vaccine vs more recently developed older style protein based. My neurologist was ready to do a multi day dose of IgG treatments if I had a reaction to the COVID19 vaccine as I did flu vaccine-biggest Flare).

I am on a phone not computer and struggling with severe CIDP recovery ❤️‍🩹 after extremely mild COVID case. So, I am unable to search for Journal articles. Previously, mentioned study: search CIDP, Celiac Disease, Cornell Medical Center Peripheral Neuropathy Clinic. It was published 2005 I believe maybe 2004?

I have been on medical lockdown since March 2020 and typically only go out to go to hands on medical appointments wearing N95 mask 😷  I was exposed at a medical appointment where masks 😷 were no longer required. Luckily I had my regular IgG infusion at home via Port between exposure and development of symptoms. The IgG treatment for my CIDP reduced my COViD symptoms. I have had very few visitors and have not visited many friends or family. If I did, we all wore N95 masks 😷 I provided.

However, it took time for neurological symptoms to show up as increased damage on my EMGs, 2 in a row, for us to prove CIDP Flare vs Long COVID. My neurologist gives me Botox injections in my severely spastic muscles due to Autonomic Nervous System Damage  every 90 days. He used EMG to guide him to worst spastic muscle spot for most effective injections. The injection needle is linked with the probe needle of EMG Machine. I was able to get a 5 day loading dose of IgG once he was able to prove it was a COVID triggered CIDP Flare. My large fiber peripheral nerves are beginning to heal as are my muscles. My vision is not back to normal yet, but the optic nerve swelling and pain are reduced.

Alpha Lipoic Acid 1200 mgs was the first nerve repair supplement I was prescribed, even back when they told me it was MS. I take nuricost brand.

Low and low normal Vit D were linked to both MS and CIDP in multiple studies. I take Carlson brand drops. But, you can’t take Vit D supplements without a Dr testing every 12-14 weeks as you can OD.

My neurologist even had low cost, but effective supplements to buy at cost to help his patients. I buy in office if low and order online if need between appointments. I take Jarrow’s B-Right Optimized B-Complex—First ingredient is Thiamine. (So, I have been taking 10+ yrs). Also Jarrow’s brand Citicoline CDP Choline. This is for Brain Function and it is useful for helping heal Autonomic Nervous System damage. Also, Butterbur was recommended  I am out of that but have an appointment in 2 weeks so I will buy in office. I don’t remember what that one was recommended for.

I still have severe damage and take RX medications my Family Dr prescribed me when I first got sick 23 yrs ago for quality of life to treat my symptoms and my neurologist has not changed her prescriptions as he feels they are the best. For severe nerve pain: Cymbalta and Lyrica. For severe muscle spasms: Baclofen days and Valium nights. After about a decade and the addition of Post Lyme Disease Arthritis she added Narcotics. I was not happy about that but I was losing functional mobility and self care skills so I gave in. I also have a Pain Management Dr so I can get long term pain management and rely less on narcotics.

I hope that some of the other supplements can help others with their painful symptoms. Please check with your treating physician before taking any of them as they may conflict with other supplements or medications that you are already using. 

[Linda68]

On 12/4/2023 at 1:49 AM, 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. 

Surprising to have GBS from COVID vaccine and not the flu vaccine. It is a known side effect of Flu vaccine and extremely rare for COVID vaccine. As GBS is an acute 1 time reaction and begins to heal with treatment and physical and occupational therapies. The same disease is also a long term autoimmune trigger disease called CIDP (Chronic Inflammatory Demyelinating Polyneuropathy). In the US, there is a GBS/CIDP Association. It is for both patients and providers. They fundraise to do further research as CIDP is a Rare Orphan Disease and very few patients are diagnosed. Those who are have a typical 5-10 yrs before they are properly diagnosed. Not many neurologists are even aware of what CIDP is. In the US, the only approved treatment by the FDA is one brand of IgG Infusions as they are the only one that has completed the FDA testing process for approval. Some patients are treated with other brands of IgG products due to off label use as well as some other treatments due to off label’s use too. I do not know what the approved treatments are in other countries because I am doing well on the FDA approved IV IgG Brand.  
 

I recommend you do some research on CIDP and if you feel it fits your symptoms better than GBS, print out some information and highlight your own symptoms that fall under CIDP better than GBS and bring with you to a follow up appointment with treating physician asap unless you have an appointment already scheduled within a month.

Good luck  🍀 

 

 

On 12/4/2023 at 1:49 AM, 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. 

Surprising to have GBS from COVID vaccine and not the flu vaccine. It is a known side effect of Flu vaccine and extremely rare for COVID vaccine. As GBS is an acute 1 time reaction and begins to heal with treatment and physical and occupational therapies. The same disease is also a long term autoimmune trigger disease called CIDP (Chronic Inflammatory Demyelinating Polyneuropathy). In the US, there is a GBS/CIDP Association. It is for both patients and providers. They fundraise to do further research as CIDP is a Rare Orphan Disease and very few patients are diagnosed. Those who are have a typical 5-10 yrs before they are properly diagnosed. Not many neurologists are even aware of what CIDP is. In the US, the only approved treatment by the FDA is one brand of IgG Infusions as they are the only one that has completed the FDA testing process for approval. Some patients are treated with other brands of IgG products due to off label use as well as some other treatments due to off label’s use too. I do not know what the approved treatments are in other countries because I am doing well on the FDA approved IV IgG Brand.  
 

I recommend you do some research on CIDP and if you feel it fits your symptoms better than GBS, print out some information and highlight your own symptoms that fall under CIDP better than GBS and bring with you to a follow up appointment with treating physician asap unless you have an appointment already scheduled within a month.

Good luck  🍀 

 

 

On 12/4/2023 at 1:49 AM, 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. 

Surprising to have GBS from COVID vaccine and not the flu vaccine. It is a known side effect of Flu vaccine and extremely rare for COVID vaccine. As GBS is an acute 1 time reaction and begins to heal with treatment and physical and occupational therapies. The same disease is also a long term autoimmune trigger disease called CIDP (Chronic Inflammatory Demyelinating Polyneuropathy). In the US, there is a GBS/CIDP Association. It is for both patients and providers. They fundraise to do further research as CIDP is a Rare Orphan Disease and very few patients are diagnosed. Those who are have a typical 5-10 yrs before they are properly diagnosed. Not many neurologists are even aware of what CIDP is. In the US, the only approved treatment by the FDA is one brand of IgG Infusions as they are the only one that has completed the FDA testing process for approval. Some patients are treated with other brands of IgG products due to off label use as well as some other treatments due to off label’s use too. I do not know what the approved treatments are in other countries because I am doing well on the FDA approved IV IgG Brand.  
 

I recommend you do some research on CIDP and if you feel it fits your symptoms better than GBS, print out some information and highlight your own symptoms that fall under CIDP better than GBS and bring with you to a follow up appointment with treating physician asap unless you have an appointment already scheduled within a month.

Good luck  🍀 

 

 

[knitty kitty]

@Linda68,

Good to hear from you! 

I looked at the ingredients of Jarrow B-Right Optimized B-Complex.  The form of Thiamine it contains is Thiamine Mononitrate.  

Thiamine Mononitrate is not a form of Thiamine that the body can utilize well.  Our body doesn't absorb much of it, and what is absorbed has to undergo chemical changes in order to make it functional.  Thiamine mononitrate is used because it's shelf-stable, it won't breakdown sitting on a store shelf for long periods of time (years), and cheap (profit margin).

Benfotiamine and Allithiamine are forms of Thiamine that are readily used by the body.  These forms are easily absorbed and are in an active form, ready to be used.

Optic nerve head swelling can be caused by Thiamine deficiency.  I've experienced this myself.  My neuropathy was awful.  Until I started taking Allithiamine (TTFD) and Benfotiamine.  

Benfotiamine and Allithiamine are very beneficial in healing peripheral neuropathy and improve optic nerve swelling.  The difference is absolutely amazing, once the body gets thiamine that's so easily utilized.  

Benfotiamine and Allithiamine are nontoxic and safe in high doses.  With High doses of Thiamine, physiological changes take place that do not occur with lower doses. 

I have had such wonderful improvement with these forms of Thiamine, I believe they can help you, too.  

If you watch the video link, you can learn how Allithiamine works and how to take it on Elliott Overton's channel and website EONutrition.  

 

https://www.hormonesmatter.com/energy-thiamine/

[knitty kitty]

Interesting study on cases of GBS after certain CoVid vaccines.

Risk of Guillain-Barré Syndrome Following COVID-19 Vaccines: A Nationwide Self-Controlled Case Series Study

https://pubmed.ncbi.nlm.nih.gov/37788935/

And...Two Case Reports of Chronic Inflammatory Demyelinating Polyneuropathy After COVID-19 Vaccination

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9970789/

 

Edited January 14, 2024 by knitty kitty
Add more information

[Vicrob]

13 hours ago, Linda68 said:

Surprising to have GBS from COVID vaccine and not the flu vaccine. It is a known side effect of Flu vaccine and extremely rare for COVID vaccine. As GBS is an acute 1 time reaction and begins to heal with treatment and physical and occupational therapies. The same disease is also a long term autoimmune trigger disease called CIDP (Chronic Inflammatory Demyelinating Polyneuropathy). In the US, there is a GBS/CIDP Association. It is for both patients and providers. They fundraise to do further research as CIDP is a Rare Orphan Disease and very few patients are diagnosed. Those who are have a typical 5-10 yrs before they are properly diagnosed. Not many neurologists are even aware of what CIDP is. In the US, the only approved treatment by the FDA is one brand of IgG Infusions as they are the only one that has completed the FDA testing process for approval. Some patients are treated with other brands of IgG products due to off label use as well as some other treatments due to off label’s use too. I do not know what the approved treatments are in other countries because I am doing well on the FDA approved IV IgG Brand.  
 

I recommend you do some research on CIDP and if you feel it fits your symptoms better than GBS, print out some information and highlight your own symptoms that fall under CIDP better than GBS and bring with you to a follow up appointment with treating physician asap unless you have an appointment already scheduled within a month.

Good luck  🍀 

 

 

Surprising to have GBS from COVID vaccine and not the flu vaccine. It is a known side effect of Flu vaccine and extremely rare for COVID vaccine. As GBS is an acute 1 time reaction and begins to heal with treatment and physical and occupational therapies. The same disease is also a long term autoimmune trigger disease called CIDP (Chronic Inflammatory Demyelinating Polyneuropathy). In the US, there is a GBS/CIDP Association. It is for both patients and providers. They fundraise to do further research as CIDP is a Rare Orphan Disease and very few patients are diagnosed. Those who are have a typical 5-10 yrs before they are properly diagnosed. Not many neurologists are even aware of what CIDP is. In the US, the only approved treatment by the FDA is one brand of IgG Infusions as they are the only one that has completed the FDA testing process for approval. Some patients are treated with other brands of IgG products due to off label use as well as some other treatments due to off label’s use too. I do not know what the approved treatments are in other countries because I am doing well on the FDA approved IV IgG Brand.  
 

I recommend you do some research on CIDP and if you feel it fits your symptoms better than GBS, print out some information and highlight your own symptoms that fall under CIDP better than GBS and bring with you to a follow up appointment with treating physician asap unless you have an appointment already scheduled within a month.

Good luck  🍀 

 

 

Surprising to have GBS from COVID vaccine and not the flu vaccine. It is a known side effect of Flu vaccine and extremely rare for COVID vaccine. As GBS is an acute 1 time reaction and begins to heal with treatment and physical and occupational therapies. The same disease is also a long term autoimmune trigger disease called CIDP (Chronic Inflammatory Demyelinating Polyneuropathy). In the US, there is a GBS/CIDP Association. It is for both patients and providers. They fundraise to do further research as CIDP is a Rare Orphan Disease and very few patients are diagnosed. Those who are have a typical 5-10 yrs before they are properly diagnosed. Not many neurologists are even aware of what CIDP is. In the US, the only approved treatment by the FDA is one brand of IgG Infusions as they are the only one that has completed the FDA testing process for approval. Some patients are treated with other brands of IgG products due to off label use as well as some other treatments due to off label’s use too. I do not know what the approved treatments are in other countries because I am doing well on the FDA approved IV IgG Brand.  
 

I recommend you do some research on CIDP and if you feel it fits your symptoms better than GBS, print out some information and highlight your own symptoms that fall under CIDP better than GBS and bring with you to a follow up appointment with treating physician asap unless you have an appointment already scheduled within a month.

Good luck  🍀 

 

 

Hi. I must not have been concise. I had neuropathic reaction to the covid jab - and covid infection but my worse reaction was to the over 65 flu jab. It was most certainly mild guillaine Barr and could have been so much worse. I’ve never known anything like it and was abroad in a house in the mountains. I’m in recovery and hopefully once I get the correct thiamine I’ll see a faster improvement. Kind regards 

[knitty kitty]

@Vicrob,

It doesn't really matter what sort of immunization or inoculation it is.  Thiamine helps recover from it.

Read more here...

https://www.hormonesmatter.com/vaccination-stressor/

[Linda68]

4 hours ago, knitty kitty said:

Interesting study on cases of GBS after certain CoVid vaccines.

Risk of Guillain-Barré Syndrome Following COVID-19 Vaccines: A Nationwide Self-Controlled Case Series Study

https://pubmed.ncbi.nlm.nih.gov/37788935/

And...Two Case Reports of Chronic Inflammatory Demyelinating Polyneuropathy After COVID-19 Vaccination

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9970789/

 

 

[Linda68]

Just now, Linda68 said:

I will discuss your supplement suggestion with my neurologist at my appointment in 2 weeks  just like I recommended anyone discuss with their treating physician the supplements my neurologist prescribed before they start taking any. I have multiple other autoimmune diseases including Hashimoto’s Thyroid Disease & Cushing Syndrome from being on low dose oral steroids (5mgs) for the years I was trying to get a diagnosis.

I never said COVID vaccines can’t cause GBS. I even noted my neurologist was ready to start multiple days of IgG infusions because my worst Flare to date was from Flu vaccine. I mentioned I was surprised she didn’t have a reaction to the Flu vaccine and she clarified that yes she did.

 

[knitty kitty]

Not to worry, I simply like to add in references for future readers. 

Vaccinations and so many things can cause Thiamine deficiency disorders.  I find it fascinating how insufficient Thiamine can affect the mitochondria.  Without Thiamine, our mitochondria don't function properly, affecting different organs, and causing all sorts of diseases.  

The importance of thiamine (vitamin B1) in humans

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10568373/

 

Low Vitamin D is found in Cushing's Syndrome.  At optimal levels, Vitamin D acts as an immune system regulator and can help reduce inflammation.  Vitamin D is frequently low in people with Celiac Disease.  Mine was extremely low, but I have taken Vitamin D and now keep my level around 80 -100 ng/mL, the same as if I lived on a tropical island.  

The fatigue of Hashimoto's Thyroiditis is improved with Thiamine, which also helps regrow hair! 

Optic nerve swelling is caused by Thiamine deficiency.... 

Bilateral papilledema with vision loss due to post–COVID-19–induced thiamine deficiency: illustrative case

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9514285/

And...Micronutrient Deficiencies Presenting with Optic Disc Swelling Associated with or without Intracranial Hypertension: A Systematic Review

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9331791/

And...

Visual loss and optic nerve head swelling in thiamine deficiency without prolonged dietary deficiency

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4039400/

I'm very thankful I found the benefits of high dose Thiamine.  My blog has my posts of my experiences on this journey.  I like to share what I've learned so others can have a smoother journey.  

[Celiac16]

I have also benefited from thiamine for lower leg neuropathy, trouble breathing, vertigo, etc. In addition to supplementing, I do low carb (under 20g) bc carbs and sugar deplete thiamine and I feel so much better not eating them. No more nausea Or dizziness after eating and I don’t have to sit up while I sleep to breathe. I am also putting on muscle when I usually can’t weight.

I have also benefited from thiamine for lower leg neuropathy, trouble breathing, vertigo, etc. In addition to supplementing, I do low carb (under 20g) bc carbs and sugar deplete thiamine and I feel so much better not eating them. No more nausea Or dizziness after eating and I don’t have to sit up while I sleep to breathe. I am also putting on muscle when I usually can’t weight.

I have also benefited from thiamine for lower leg neuropathy, trouble breathing, vertigo, etc. In addition to supplementing, I do low carb (under 20g) bc carbs and sugar deplete thiamine and I feel so much better not eating them. No more nausea Or dizziness after eating and I don’t have to sit up while I sleep to breathe. I am also putting on muscle when I usually can’t weight.

I have also benefited from thiamine for lower leg neuropathy, trouble breathing, vertigo, etc. In addition to supplementing, I do low carb (under 20g) bc carbs and sugar deplete thiamine and I feel so much better not eating them. No more nausea Or dizziness after eating and I don’t have to sit up while I sleep to breathe. I am also putting on muscle when I usually can’t weight.

I have also benefited from thiamine for lower leg neuropathy, trouble breathing, vertigo, etc. In addition to supplementing, I do low carb (under 20g) bc carbs and sugar deplete thiamine and I feel so much better not eating them. No more nausea Or dizziness after eating and I don’t have to sit up while I sleep to breathe. I am also putting on muscle when I usually can’t weight.

I have also benefited from thiamine for lower leg neuropathy, trouble breathing, vertigo, etc. In addition to supplementing, I do low carb (under 20g) bc carbs and sugar deplete thiamine and I feel so much better not eating them. No more nausea Or dizziness after eating and I don’t have to sit up while I sleep to breathe. I am also putting on muscle when I usually can’t weight.