This article is kind of blowing my mind

[Daffodil]

My me/cfs started with EBV and consequently, I started having all these gut issues and slowly it led to this entire thing.

All the toxic drugs I tried for years didnt help....

Now after reading Jenn and Jeff;s stories I thought the delayed gastric emptying or w/e it was could be coming from my neck pressing on vagus nerve or w/e but I was wrong.

Then I thought the virus shifted the microbiome......but ...

did you guys know that it is actually documented that norovirus, herpes family viruses such as EBV and some others, can cause gastroparesis on their own? I actually never saw a paper say this before!

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6939966/


"slowly reversible injury to gut neuromodulator cells!!"
and antivirals are not effective!


Could it be that that is why FMT or whatever we do sometimes does not offer permanent results?? our neuromodulator cells are injured!?

or maybe this is just the mechanism EBV uses to damage the microbiome and shift it? maybe vaccines can do the same?

 

[Daffodil]

all these years not one doctor suggested testing for gut motility issues. has anyone out there tried drugs that help motility? did they help?

 

[Rufous McKinney]

Then I thought the virus shifted the microbiome......but ...

did you guys know that it is actually documented that norovirus, herpes family viruses such as EBV and some others, can cause gastroparesis on their own? I actually never saw a paper say this before!

thats all fascinating.....

I have bouts of something you'd call the stomach flu. This happens yearly- and when it happened two months apart- was when I went from MILD ME to pretty BAD moderate ME. So when it happened again, fully COVID sequestered- there is no way this is a stomach flu. I caught nothing.

My stomach shuts off- the event then is primarily severe nausea and vomitting with no intestinal involvement.

Never diagnosed at the ER either- they said I had gastro enteritis- what ever that is.

So I end up with gastroperesis AFTER these events which can last for months. Once I am past the acute stage- lasts about 2-3 weeks- this delayed emptying goes on and on but I have few other symptoms and it sort of doesn't bother me, it jsut WEIRD to slosh the Titanic ballast. So I drink even less water.

 

[Pyrrhus]

all these years not one doctor suggested testing for gut motility issues. has anyone out there tried drugs that help motility? did they help?

Low-dose creatine surprisingly solved my gut motility problems. (in combination with B vitamins et al.)

 

[Rufous McKinney]

has anyone out there tried drugs that help motility? did they help?

I do use chinese traditional herbs in a digestive formula for IBS-d which contributes to the delayed emptying correcting over time (many weeks)...

 

[Daffodil]

Low-dose creatine surprisingly solved my gut motility problems. (in combination with B vitamins et al.)

did it help the me/cfs?

 

[Daffodil]

thats all fascinating.....

I have bouts of something you'd call the stomach flu. This happens yearly- and when it happened two months apart- was when I went from MILD ME to pretty BAD moderate ME. So when it happened again, fully COVID sequestered- there is no way this is a stomach flu. I caught nothing.

My stomach shuts off- the event then is primarily severe nausea and vomitting with no intestinal involvement.

Never diagnosed at the ER either- they said I had gastro enteritis- what ever that is.

So I end up with gastroperesis AFTER these events which can last for months. Once I am past the acute stage- lasts about 2-3 weeks- this delayed emptying goes on and on but I have few other symptoms and it sort of doesn't bother me, it jsut WEIRD to slosh the Titanic ballast. So I drink even less water.

fecal transplants..?

 

[Rufous McKinney]

fecal transplants..?

thinking about it again- I could use my daughter, maybe.

 

[Pyrrhus]

did it help the me/cfs?

It gave me a little more energy, and a little more muscle strength.

 

[heapsreal]

all these years not one doctor suggested testing for gut motility issues. has anyone out there tried drugs that help motility? did they help?

My daughter has pots and EDS, the slow motility is a common issue with EDS guys.

The drug maxolon/metoclapramine which is used for nausea works by increasing gastric emptying through increased gastric motility. Empty stomache, nothing to vomitt. Caution can be with constipation and possible bowel obstruction causing impacted bowel. But its worth talking to a dr about it.

 

[borko2100]

The rate of digestion (peristalsis) is controlled by the autonomic nervous system. Obviously if your autonomic nervous system is not functioning properly, as is the case in ME/CFS, this can have negative effects on your gut / digestion. That's why I think FMT is not a cure since it is only addressing a downstream symptom, not the root of the problem.

 

[Springbok1988]

I was on metoclopramide and saw no change in my fatigue. I remember having bad side effects and quitting but I don’t remember what they were.

 

[Learner1]

The rate of digestion (peristalsis) is controlled by the autonomic nervous system. Obviously if your autonomic nervous system is not functioning properly, as is the case in ME/CFS, this can have negative effects on your gut / digestion. That's why I think FMT is not a cure since it is only addressing a downstream symptom, not the root of the problem.

Let's suppose someone doesn't have a problem with the autonomic nervous system but did have a bunch of antibiotics which indiscriminately killed off bacteria in their microbiome. These bacteria metabolize certain biochemicals and if they've been killed off, that function would be missing...

Perhaps an FMT might be helpful in this case.

And perhaps this patient might also have other comorbidities.

It might be worth solving these problems individually, one by one, with the aggregate result bringing someone to wellness. It's unlikely there's a magic bullet for this heterogeneous disease.

 

[Daffodil]

The rate of digestion (peristalsis) is controlled by the autonomic nervous system. Obviously if your autonomic nervous system is not functioning properly, as is the case in ME/CFS, this can have negative effects on your gut / digestion. That's why I think FMT is not a cure since it is only addressing a downstream symptom, not the root of the problem.

but i have heard fecal transplants can normalize gut motility too. they have tested it before and after. which means the issue could theoretically be just gut microbiome issues. there is cross talk between the brain and gut...hard to separate the 2. vagus nerve carries stuff from gut to brain but they dont know how. but thats what they think

 

[Daffodil]

5 days after my cervical fusion C3-C6, i had this massive outpouring of gas from my rectum. I realize this could just be my digestive system waking up after the anesthesia but i sometimes wonder whether something was freed up in my neck. no way to know. i didnt have that happen with other surgeries i had such as L5-S1 fusion just a few weeks prior to the neck one. But maybe it has to do with the kind or amount of anesthetic used.?

 

[Daffodil]

Let's suppose someone doesn't have a problem with the autonomic nervous system but did have a bunch of antibiotics which indiscriminately killed off bacteria in their microbiome. These bacteria metabolize certain biochemicals and if they've been killed off, that function would be missing...

Perhaps an FMT might be helpful in this case.

And perhaps this patient might also have other comorbidities.

It might be worth solving these problems individually, one by one, with the aggregate result bringing someone to wellness. It's unlikely there's a magic bullet for this heterogeneous disease.

the fact is, that there are several who have benefitted significantly from FMT alone and the results are long lasting if not permanent for these people. 2 or 3 on FB are 80% improved from this, they say. maybe this will be the people whose sickness began with gut infection and they are not very long term patients...

 

[Pyrrhus]

The rate of digestion (peristalsis) is controlled by the autonomic nervous system. Obviously if your autonomic nervous system is not functioning properly, as is the case in ME/CFS, this can have negative effects on your gut / digestion. That's why I think FMT is not a cure since it is only addressing a downstream symptom, not the root of the problem.

Excellent point.

Related discussion:
https://forums.phoenixrising.me/thr...dysautonomic-gastrointestinal-motility.81362/

 

[Daffodil]

but i have heard fecal transplants can normalize gut motility too. they have tested it before and after. which means the issue could theoretically be just gut microbiome issues. there is cross talk between the brain and gut...hard to separate the 2. vagus nerve carries stuff from gut to brain but they dont know how. but thats what they think

let me correct. i read that FMT can improve motility..not sure it can normalize...i have to look into that further

 

[2Cor.12:19]

Could it be that that is why FMT or whatever we do sometimes does not offer permanent results?? our neuromodulator cells are injured!?
or maybe this is just the mechanism EBV uses to damage the microbiome and shift it? maybe vaccines can do the same?

Hi @Daffodil My ME/CFS also began with an acute EBV infection (35 yrs ago) and I've been dealing with gut motility issues for decades. I have no doubt at all that my initial infection caused permanent and progressive peripheral nerve damage. From the first morning I awoke sicker than I had ever been, I experienced vibrating sensations throughout my body. Over the past 15 years it has progressed into axonal polyneuropathy affecting my sensor/motor perepheral and autonomic nervous system.

• How Does the Epstein-Barr Virus Affect Nerves?
• Peripheral neuropathy - Mayo Clinic (EBV is listed among causes)

I've battled with GERD, IBS-C, motility problems and SIBO for years. Taking PPI's (Prilosec, Nexium) only made things worse and I'm convinced contributed to developing SIBO and malabsorption issues leading to vitamin deficiencies (particularly B1 -thiamine) - which then becomes a vicious cycle.

I'm currently taking Rifaximin for the SIBO and was finally able to get off the Nexium after 15 years!!! The wonderful herbal bitters Iberogast is what enabled me to switch straight over without any rebound effect - Iberogast was developed in the 60's in Germany by Bayer. There's been much research on it and it's safe and effective or gastro disorders. My GERD is almost non existent.

• STW 5 (Iberogast) Therapy in Gastrointestinal Functional Disorders
• Gastric motility - Function & how to keep it in balance

I've also just started taking Lion's Mane and B1 (thiamine in the form of benfothiamine) in hopes to repair nerve damage so that my guts can heal and start working without needing laxatives. I'm pretty hopeful about this - time will tell. Here's some good info on that I hope will help you.

• SIBO, IBS, and Constipation: Unrecognized Thiamine Deficiency? by Elliot Overton
• Gastrointestinal Disease and Thiamine by Derrick Lonsdale MD - author of Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition
• Lion’s Mane Mushroom For Neuropathy: Research, Benefits & Dosage

Best wishes!

 

[Daffodil]

Hi @Daffodil My ME/CFS also began with an acute EBV infection (35 yrs ago) and I've been dealing with gut motility issues for decades. I have no doubt at all that my initial infection caused permanent and progressive peripheral nerve damage. From the first morning I awoke sicker than I had ever been, I experienced vibrating sensations throughout my body. Over the past 15 years it has progressed into axonal polyneuropathy affecting my sensor/motor perepheral and autonomic nervous system.

• How Does the Epstein-Barr Virus Affect Nerves?
• Peripheral neuropathy - Mayo Clinic (EBV is listed among causes)

I've battled with GERD, IBS-C, motility problems and SIBO for years. Taking PPI's (Prilosec, Nexium) only made things worse and I'm convinced contributed to developing SIBO and malabsorption issues leading to vitamin deficiencies (particularly B1 -thiamine) - which then becomes a vicious cycle.

I'm currently taking Rifaximin for the SIBO and was finally able to get off the Nexium after 15 years!!! The wonderful herbal bitters Iberogast is what enabled me to switch straight over without any rebound effect - Iberogast was developed in the 60's in Germany by Bayer. There's been much research on it and it's safe and effective or gastro disorders. My GERD is almost non existent.

• STW 5 (Iberogast) Therapy in Gastrointestinal Functional Disorders
• Gastric motility - Function & how to keep it in balance

I've also just started taking Lion's Mane and B1 (thiamine in the form of benfothiamine) in hopes to repair nerve damage so that my guts can heal and start working without needing laxatives. I'm pretty hopeful about this - time will tell. Here's some good info on that I hope will help you.

• SIBO, IBS, and Constipation: Unrecognized Thiamine Deficiency? by Elliot Overton
• Gastrointestinal Disease and Thiamine by Derrick Lonsdale MD - author of Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition
• Lion’s Mane Mushroom For Neuropathy: Research, Benefits & Dosage

Best wishes!

thanks for the info. why didnt i ever come across this idea of ebv damaging neuromodulator sells in the gut before?? after 27 yrs of research? lol wtf

one article even named norovirus, another cfs-causing infection, as capable of doing this. if i had heard such a believable sounding mechanism before, my decisions would have been much different. i even remember exactly all the phases my gut went through after the EBV. but all i did was take years and years of toxic antimicrobials. this is so frustrating and depressing.

have you ever thought about fecal transplant?