Help for .. Gut Dysbiosis / Worsening P.E.M. / Reaction to Water?

[Howard]

What can I take to combat the following condition, likely related to bad intestinal bacteria / unhealthy gut flora, etc.?

I'm regressing back into formerly gotten-rid-of symptoms for reasons that are far from obvious.

• My abdomen has been constantly bloated (for the past two months)
• There's been a pronounced uncontrollable nail fungus/nail psoriasis growth
• I am reacting rather poorly to straight water (through my jejunostomy feeding tube).
• My overall level of weakness has been increasing.. P.E.M. is longer lasting (all-day vs. a more typical hour or two)
• Urine is often dark several days in a row

NOTE: nothing has changed in recent months (feeding tube formula, nor hydration amount) besides ever-increasing tooth pain

*Water ingestion (by itself, via tube flushing) triggers intense internal overheating at night only, sweating, plus, I also become angry. Brain fog and confusion are also present.
These symptoms typically last one hour.

*Nail fungus started two years prior to this illness (my P.E.M. events - 2008) and had been kept reasonably under control with probiotics. Not now. Exponential growth.


Revisiting 2013 - 2018

The same thing used to happen to me prior to my curing of (relatively speaking) gut issues via probiotics and diet restrictions (eliminating carbs, simple sugars). But now that I am tube fed there is nothing additional to eliminate from my diet.


I am planning on upping my probiotic intake by 50% (lactobacillus, bifidobacterium). But I am asking for additional recommendations.

Right now it's 3am and I am burning up on the inside/sweating. No fever. This used to happen quite often, before I altered my diet several years ago, and while (I believe) my gut problems were (seemingly) still unresolved.

How do I rebalance my gut flora (assuming that's the problem)?


Thanks,
H

 

[Irat]

What can I take to combat the following condition, likely related to bad intestinal bacteria / unhealthy gut flora, etc.?

I'm regressing back into formerly gotten-rid-of symptoms for reasons that are far from obvious.

• My abdomen has been constantly bloated (for the past two months)
• There's been a pronounced uncontrollable nail fungus/nail psoriasis growth
• I am reacting rather poorly to straight water (through my jejunostomy feeding tube).
• My overall level of weakness has been increasing.. P.E.M. is longer lasting (all-day vs. a more typical hour or two)
• Urine is often dark several days in a row

NOTE: nothing has changed in recent months (feeding tube formula, nor hydration amount) besides ever-increasing tooth pain

*Water ingestion (by itself, via tube flushing) triggers intense internal overheating at night only, sweating, plus, I also become angry. Brain fog and confusion are also present.
These symptoms typically last one hour.

*Nail fungus started two years prior to this illness (my P.E.M. events - 2008) and had been kept reasonably under control with probiotics. Not now. Exponential growth.


Revisiting 2013 - 2018

The same thing used to happen to me prior to my curing of (relatively speaking) gut issues via probiotics and diet restrictions (eliminating carbs, simple sugars). But now that I am tube fed there is nothing additional to eliminate from my diet.


I am planning on upping my probiotic intake by 50% (lactobacillus, bifidobacterium). But I am asking for additional recommendations.

Right now it's 3am and I am burning up on the inside/sweating. No fever. This used to happen quite often, before I altered my diet several years ago, and while (I believe) my gut problems were (seemingly) still unresolved.

How do I rebalance my gut flora (assuming that's the problem)?


Thanks,
H

I m sorry for your flare up,

You said that nothing has changed,so the only two things I can think of is that

.

• A poor dental hygiene,or gum infections which allows bacteria to grow out of balance in your mouth can disturb your microbioms in your gut
• And do you know if you have high or low stomach acid ?as too low hydrochloric acid levels can lead to imbalances in the gut etc

 

[Viala]

I agree with @Irat, it may be the tooth problem.
I remember reading couple of times that dental problems can lead to overall inflammation, so it is possible that this is causing your additional PEM, via inflammation and/or by impacting intestinal flora. I also remember stories that someone's fatigue has been cured when they resolved their tooth problem. What is interesting, apparently one also may have teeth or gum infection without even noticing it.

What helped my gum health was switching to no fluoride toothpaste, amazingly no more sensitive gums afterwards.

I am sorry that you feel worse, I hope you will find a solution and feel better.

 

[Irat]

I agree with @Irat, it may be the tooth problem.
I remember reading couple of times that dental problems can lead to overall inflammation, so it is possible that this is causing your additional PEM, via inflammation and/or by impacting intestinal flora. I also remember stories that someone's fatigue has been cured when they resolved their tooth problem. What is interesting, apparently one also may have teeth or gum infection without even noticing it.

What helped my gum health was switching to no fluoride toothpaste, amazingly no more sensitive gums afterwards.

I am sorry that you feel worse, I hope you will find a solution and feel better.

What's also helpful is to eat or chew some cheese after a meal which prevents caries,balance ph levels, produces cleansing saliva which washes away bacteria and reduce enamel demineralization ,
manuka honey helps to inhibit oral bacterias and prevent gum desease.
And Xylit ,a birch sugar,can prevent growth of harmful oral bacterials too.
Saltwater mouth wash
Baking soda



!!!!!!!!!!! but I don t know if this also would cause a die off and herx reaction,because oil pulling does cause herx.!!!!!!!!!! (Well ,in sensitive ppl like me )

https://www.manukahealth.co.nz/en-nz/get-inspired/health-wellbeing-blog/using-manuka-honey-for-oral-care/#:~:text=Luckily, research shows that high,is how tooth decay starts).

 

[Viala]

And Xylit ,a birch sugar,can prevent growth of harmful oral bacterials too.

Xylitol is interesting and I read that it is quite popular in Finland, kids have xylitol chewing gum after meals, they don't drink sweet juices, no problem with caries. Apparently it has very good influence on oral flora, it can prevent and even reverse caries at a dose of 8g a day. I was quite excited to try that, but it is still sugar so it wasn't good for me. Sadly it's not for everyone and can cause side effects (good idea to start at a lower dose), but I will give it a chance again if I will be able to tolerate it. I also read that a lot depends on from what xylitol is made, often it's made from corn, which can be problematic for some.

A word of caution, it is very toxic to dogs.

https://www.ncbi.nlm.nih.gov/labs/pmc/articles/PMC4232036/

 

[Irat]

Xylitol is interesting and I read that it is quite popular in Finland, kids have xylitol chewing gum after meals, they don't drink sweet juices, no problem with caries. Apparently it has very good influence on oral flora, it can prevent and even reverse caries at a dose of 8g a day. I was quite excited to try that, but it is still sugar so it wasn't good for me. Sadly it's not for everyone and can cause side effects (good idea to start at a lower dose), but I will give it a chance again if I will be able to tolerate it. I also read that a lot depends on from what xylitol is made, often it's made from corn, which can be problematic for some.

A word of caution, it is very toxic to dogs.

https://www.ncbi.nlm.nih.gov/labs/pmc/articles/PMC4232036/

Yes always research before trying something,here we have toothpaste with Xylit as an ingredient instead of fluoride, and i always used it before.so using a dose of 8g i think its too much .I just use baking soda to brush my teeth now and the cheese after a meal,I don t tolerate regular tooth paste anymore.

 

[lenora]

HI Howard......I can only tell you that I've been through dental problems that seemed to have no end.

A new Pik water flow for cleansing in between meals, and electric toothbrush have helped considerably.

The heads should be changed at least every 3 mos. Call your dental office to be advised of the type he prefers. If you can't afford new devices, then at least change the heads. We certainly don't want you suffering unnecessarily.

As a whole we do have a higher percentage of dental problems, including abcesses, and these two pieces of equipment can help immensely. On the whole older Americans are keeping their teeth longer today, thus it's all new territory for the dentist also. (I have no idea of your age....just saying).

Don't use peroxide....it's very drying for the mouth and yet a lot of people think it's safe. Wishing you well. Yours, Lenora.

 

[Howard]

Thank you both for the recommendations @Viala @Irat

Xylitol

Somewhat coincidentally, I did start using Xylitol chewing gum a couple of weeks ago. On the positive side of the ledger, it did temporarily relieve some of the tooth/teeth pain, but.. the intestinal side effects were notable (the laxative effect was surprisingly strong.. and wound up being physically exhausting as well).

The thing is, I've been avoiding the dentist trip (to get the affected teeth pulled) because the transport experience is physically punishing, and subsequently debilitating. But really, I don't have a choice. Fear is only a word. I just need to schedule.


Reactions

I'm allergic to honey. At least, I get confused and become slightly paranoid after ingesting.

And interestingly enough, baking soda (sodium bicarbonate) has a similar effect as honey.. causing confusion, and eventual panic attacks.

Bizarre, huh? Nothing else causes me to react in that particular manner, besides those two specific items.

But yes, it seems possible my gut flora is being negatively impacted.


Acid

I'm not sure on the stomach acid question, but I don't really eat any food orally ..besides three spoonfuls of applesauce, so I can take my probiotics daily and two spoonfuls of pickled relish, to initiate some form of additional peristalsis in my small intestine.


Thanks,
H

 

[Irat]

Thank you both for the recommendations @Viala @Irat

Xylitol

Somewhat coincidentally, I did start using Xylitol chewing gum a couple of weeks ago. On the positive side of the ledger, it did temporarily relieve some of the tooth/teeth pain, but.. the intestinal side effects were notable (the laxative effect was surprisingly strong.. and wound up being physically exhausting as well).

The thing is, I've been avoiding the dentist trip (to get the affected teeth pulled) because the transport experience is physically punishing, and subsequently debilitating. But really, I don't have a choice. Fear is only a word. I just need to schedule.


Reactions

I'm allergic to honey At least, I get confused and become slightly paranoid after ingesting.

And interestingly enough, baking soda (sodium bicarbonate) has a similar effect as honey.. causing confusion, and eventual panic attacks.

Bizarre, huh? Nothing else causes me to react in that particular manner, besides those two specific items.

But yes, it seems possible my gut flora is being negatively impacted.


Acid

I'm not sure on the stomach acid question, but I don't really eat any food orally ..besides three spoonfuls of applesauce, so I can take my probiotics daily and two spoonfuls of pickled relish, to initiate some form of additional peristalsis in my small intestine.


Thanks,
H

I m allergic to honey too .....i also can relate to the dentist problem,as I can t leave the house and a dentist office plus a treatment there would finish me off I guess. Someone who is also bed bound had her molar pulled at home on the kitchen table by a dentist without local anaesthetic, as she could not tolerate it .so mabey you could find a dentist that comes to your house.......and if you have an infected tooth no amount of natural treatment would stop this anyway,sorry I did get this wrong from your post,that your tooth is infected otherwise I would not have made this suggestions .

 

[Judee]

I am planning on upping my probiotic intake by 50% (lactobacillus, bifidobacterium). But I am asking for additional recommendations.

Are you allergic to yeast? I'm asking because we used S. Boulardii's probiotic to get rid of thrush in my Mom's mouth and throat.

It worked very quickly when we mixed some in water that she gargled with. She would also sometimes swallow the pill.

Reviews I've read said it also helps with Candida.

That might help with several of these issues...or maybe not at all...but just a thought.

Also water can have other things in it like chlorine or sulfurs to disinfect not to mention the carbon in the filter can come from coconut. I've read stories of people even reacting to that.

Can you try a bottled spring water maybe to see if you get the same reactions?

I filter my water with an old Amway water purifier and it helps. Otherwise the chemicals in our water are so strong that I can smell them.

Edit: I do agree with the others though. I think at some point, you're going to have to do something with that tooth.

 

[Viala]

@Irat, I imagined what you wrote about your friend... and try not to think about it. Good point about anaesthetic. Gee, and I should go to a dentist at some point as well.

 

[Viala]

The thing is, I've been avoiding the dentist trip (to get the affected teeth pulled) because the transport experience is physically punishing, and subsequently debilitating. But really, I don't have a choice. Fear is only a word. I just need to schedule.

I can only imagine how difficult it must be. Healthy people avoid dentists and being bedbound complicates it so, so much. Home visit dentist maybe, what Irat mentioned?

I'm allergic to honey. At least, I get confused and become slightly paranoid after ingesting.
And interestingly enough, baking soda (sodium bicarbonate) has a similar effect as honey.. causing confusion, and eventual panic attacks.

I have similar reaction to honey. I used to buy local honey in large jars, high quality. At some point I started to have this negative reaction. So I tried another type of honey from the same manufacturer. Then I tried organic honey from a different manufacturer and a store bought regular honey, all the same. My suspicion is that it may be glyphosate, from what I read it is impossible nowadays to get pure honey, all of them are polluted, even organic one. But it also may be anything else. I don't get this reaction from sugar, so it is not the carb load. I didn't try manuka honey though, it could be ok.

Herbs can also be helpful, chamomile or sage tea mouthwash. I remember I used it years ago.

 

[Shanti1]

Wondering if you have had some bacteria from the colon move up into small intestine resulting in some Small Intestinal Bacterial Overgrowth (SIBO), or possibly there is some candida growth or both? I'm not sure if there is something fermentable in the tube formula that could be contributing....

Is it possible the water is the small intestine and causing the walls to expand, triggering an unwanted autonomic mediated response? Not sure how much water enters at once.

 

[Shanti1]

Wondering if you have had some bacteria from the colon move up into small intestine resulting in some Small Intestinal Bacterial Overgrowth (SIBO), or possibly there is some candida growth or both? I'm not sure if there is something fermentable in the tube formula that could be contributing....

Is it possible the water is the small intestine and causing the walls to expand, triggering an unwanted autonomic mediated response? Not sure how much water enters at once.

If you aren't already, maybe you could try an elemental formula in the feeding tube? Elemental formulas are basically "pre-digested" formulas made up of individual amino acids, fatty acids, and sugars (not sure if you could tolerate), but they are used as a medically recognized treatment for SIBO without the additional need for antibiotics or natural antimicrobials).

 

[Howard]

I appreciate everybody's responses, as they give me (additional) options to consider.

@Judee

Now that I think about it there's probably not much that can be done for the teeth themselves, or the pain. (on my end). However, I will check out possible Candida solutions.

Water

The water reaction only happens late in the evening or overnight. And my reaction only coincides with this particular state of my intestines.. bloated / gut flora likely imbalanced.

The different types of bottled water I've used, as well as tap water, have never seemed to make a difference.. but I won't rule out the possibility.

I'm thinking more along the lines of cortisol levels decreasing, something like that (because it only ever happens at night). But really, I have no idea how any of this works.


@Viala

Several years ago when I was very severe, I did have a dentist come out and treat me in bed. However, my final home experience went very wrong..

Despite that, I would consider having someone come out, except that my state insurance won't cover it.

@Shanti1

Good questions.

SIBO is a possibility. As I have gastroparesis, things move rather slowly down there.

Feeding Formula

I've been on the same Kate Farms Peptide 1.5 formula for the past two years, and it's very simply put together. According to them, everything is broken down into its simplest form. And this was the only formula I was able to tolerate, mostly due to its not having any dairy related components.

There could be something there, but I wouldn't know where to start looking.

Fullness

But you may be right about the autonomic nervous system… considering my intestines are full and pushing outward upward and in all directions at once when the problem occurs. Good catch. I also experience semi-frequent ectopic heartbeats for the same exact reason. So it makes sense that a sudden additional burst of water could exacerbate the condition.

Typically it's between 40 to 60 ml per water flush, three times per day. But the only time I have a reaction is in the evening. Otherwise I run about 70 ml per hour 24/7. Oh. And even before the tube feeding, I had the same "water" issue, but only late in the evening (and coinciding with a bout of unwell gut).


Thanks,
H

 

[sometexan84]

What can I take to combat the following condition, likely related to bad intestinal bacteria / unhealthy gut flora, etc.?

I'm regressing back into formerly gotten-rid-of symptoms for reasons that are far from obvious.

• My abdomen has been constantly bloated (for the past two months)
• There's been a pronounced uncontrollable nail fungus/nail psoriasis growth
• I am reacting rather poorly to straight water (through my jejunostomy feeding tube).
• My overall level of weakness has been increasing.. P.E.M. is longer lasting (all-day vs. a more typical hour or two)
• Urine is often dark several days in a row

NOTE: nothing has changed in recent months (feeding tube formula, nor hydration amount) besides ever-increasing tooth pain

*Water ingestion (by itself, via tube flushing) triggers intense internal overheating at night only, sweating, plus, I also become angry. Brain fog and confusion are also present.
These symptoms typically last one hour.

*Nail fungus started two years prior to this illness (my P.E.M. events - 2008) and had been kept reasonably under control with probiotics. Not now. Exponential growth.


Revisiting 2013 - 2018

The same thing used to happen to me prior to my curing of (relatively speaking) gut issues via probiotics and diet restrictions (eliminating carbs, simple sugars). But now that I am tube fed there is nothing additional to eliminate from my diet.


I am planning on upping my probiotic intake by 50% (lactobacillus, bifidobacterium). But I am asking for additional recommendations.

Right now it's 3am and I am burning up on the inside/sweating. No fever. This used to happen quite often, before I altered my diet several years ago, and while (I believe) my gut problems were (seemingly) still unresolved.

How do I rebalance my gut flora (assuming that's the problem)?


Thanks,
H

So, first off, almost everyone here has intestinal dysbiosis on some level. It's a major factor involved in the symptoms.

And your dark urine points to the strong possibility of intestinal permeability, leading to pathogens escaping from gut into bloodstream, and then damaging liver. Very likely just transient damage.

The gut microbiota dysbiosis plays a massive role in the intestinal permeability. We want to fix both.

I'm not surprised you felt better after the probiotics.

Everything you're describing points to Enterovirus (or another persistent RNA viral infection that uses the gastrointestinal epithelium as a reservoir) in the gut. The intestinal epithelial cells infected by EV contribute to intestinal permeability. Gut dysbiosis and EV together make everything worse. EV contributes to gut dysbiosis and intestinal permeability. Gut dysbiosis contributes to EV, and intestinal permeability.

The intestinal epithelial cells help maintain a healthy relationship between gut microbiota and host immunity. EV infection of IECs mess up everything.

How to restore gut flora?

Great question. Wish I knew of a way to do this w/out having to address the viral infection in the GI tract. But unfortunately, any fixes w/ antibiotics or probiotics will be temporary as long as the viral infection persists.

Same exact thing is going on w/ SARS-CoV-2 and Long Covid.

Only solution is to fix the root problem. Which is why I've been so adamant about Peginterferon Lambda 1a.

But 90%+ of people still don't know what I'm talking about, lol

PS: the water thing is also likely related to bacteria and/or enterovirus. this is why Dr chia suggests drinking only like triple distilled water

 

[sometexan84]

Also, 9 of 11 gastroparesis patients had Enterovirus in biopsy here - https://pubmed.ncbi.nlm.nih.gov/27344315/

Nancy Klimas was actually involved w/ that study

 

[christiankatz]

I'm truly sorry, @Howard you're feeling worse and hope you can get on top of it soon.

I don't know much about teeth or probiotics like everyone else here, but I just happen to have a tooth infection and finally have a dentist appointment.

The tooth infection gave me a new level of fatigue I hadn't experienced before, which motivated me to get the appointment more than the pain did.

If it takes all the energy I can muster to get to the dentist 5 minutes away, I can't imagine how it is for you.

 

[lenora]

HI @Howard.....I had two teeth that were infected and another that had a cavity. My problem was that I couldn't decide where the pain was coming from....my teeth, ears or sinus as all were involved.

My osteopath was the one who figured it out and told me to see a dentist that very day. I called and my dentist was kind enough to see me immediately and then came in on his day off to treat me. This resulted in two teeth being pulled and a course of antibiotics b/c I had let it go too long. I'm afraid of the same thing happening again, so go for frequent check-ups and cleanings. I still think a water pik would be of great use to you, especially in the position you're in.

The brownish urine could also have to do with a smaller output. Have you noticed this? If not, it's probably like Irat has described. This has all encouraged me to stick with probiotics, but not overdo them.

Perhaps there is a dental service that will come to your home. I can't say that I've ever heard of it, but your dentist would know. Overstate your condition with the receptionist so your case will be taken seriously and tell her you need an appt. ASAP. The last thing you need is a whole body infection.

It's a pest, isn't it? Good luck and I hope it doesn't cost you a small fortune. I'm really sorry that you aren't well. Yours, Lenora.

 

[christiankatz]

so go for frequent check-ups and cleanings.

For me, those days are over. It's too much to recover from. But it's great for someone who can find that kind of strength.

The last thing you need is a whole body infection.

Totally agree, @lenora.