Did treating sibo have any effect on your ME

[Davsey27]

I was curious if anyone of you have gone down this avenue

I know with ME,energy production goes hypometabolic and dauer state as a protective mechanism

I still haven't figured out how to undo this

I eat 1200 calories,1500 or 2500 still bloated

Often no pain just bloating

I notice when i wake up feeling poisoned in the morning im more bloated.

Is it an ebv/viral/chemical/mold terrain that's intertwined I don't know .

I get 2 bowel movements a week and have to take high doses of magnesium

I didn't get ME from eating bad.I got it while working near the airport where I was exposed to alot of radiation and pollution in 2018

Gradual onset.At first the symptoms described went away going to the forest all day,then it didn't have the same effect though it still helps some

I didn't have the dauer back then

Wondering what happened between 2018 and now

Between being 32 and 38.I was very fit and athletic

There is no doubt environment was one of the causes in a possible epigenetic shift

This may have paved the way for chronic ebv and some other variables

[Elevated cytokines in the brain and other unknown factors ]

Benzos help.Perhaps more so than LDN

Anyways I've heard as the ilness progresses something with the autonomic nervous system in the brain slows gut motility and eventually patients get gastropenesis.This is one of the ME perspectives

In functional medicine world they say it's sibo,even though I never been tested but wouldn't be surprised

If it is sibo,does this mean treating it will help.If it's a hit and run theory than I'm wondering how this factors in.

If your hit with a virus,sibo,mold or something else isn't there still damage to the central nervous system that is keeping ME going

It's not like eating bad caused ME,I observe many people at grocery stores who are bloated yet don't have ME

They eat whatever and there microbiome isn't wrecked to the point where they get ME

I've attached a picture

Appreciate any perspectives

Thank you

 

[Carl]

Most of what you describe can be explained by your stomach function. dauer? Does that mean parasites? If so hypochlorhydria is highly likely IMO. That allows parasites, their eggs and bacteria to survive and get into the small intestine potentially causing problems further down including SIBO.

I suggest that you read about Urease because it is highly likely to be a factor promoting your problems including being a part of what causes your ME.

DO NOT TAKE ANY ANTIMICROBIALS until you have an effective plan to destroy ALL forms of biofilm protected bacteria, yeast, fungi & protozoa. Read about Quorum Sensing, Efflux Pumps and Biofilms. You get only ONE chance with biofilm protected pathogens because they will adapt to any antimicrobial after one exposure. If you fail to remove all biofilm(s) before using any antimicrobials then they will adapt to it and it will no longer function.

Constipation can be a symptom of low acetylcholine levels. I did what I could to raise my acetylcholine levels using choline and acetic acid or ALCAR which helped a little. I had a slow bowel for decades until recently, with some occurrences of IBS on a small number of occasions. Whey gave me terrible diarrhoea and I never used it twice. I did try Haritaki herb which made me go but I only needed a very small amount of just over 1/16 tsp and anything more gave me diarrhoea. Don't waste time with capsules because the amount is not controllable, find it in powder form. There are reports of people on Amazon describing explosive diarrhoea after purchasing capsules. Your bowel seems very slow, far slower than mine was but I would go very very slow with it until you find out how much that you need. Be prepared for diarrhoea if you take too much.

BTW An altered microbiome is not a cause of ME, it is a symptom. The general population have the problems that I have described but the infection(s) don't affect the location which causes ME. Think of it like you drew the unlucky straw. SIBO and bloating is a very widespread problem, there are a very large amount of people on Reddit looking for answers taking antimicrobials left right and centre and not addressing the cause. I gave up on Reddit because there were just too many requests for help. I still got a request the other day despite being signed out of Reddit. Not sure why I got that TBH.

BTW many people use HCL to increase stomach acid but I am not convinced that it works. I tried it myself and I noticed burping ie carbon dioxide which is produced when urease reacts with urea in saliva. You can test this yourself with an acid drink such as lemon or vinegar. Suck lots of saliva and after you have swallowed lots of saliva drink the acid. Sit down and if you burp within 90 seconds then that is some evidence for the presence of urease.

 

[Davsey27]

I agree

An altered microbiome is not the cause of ME

Seems there may be some kind of feedback loop switch

I did well with moderate to high but not super high carbs before ME so long that I did some exercise

Nowadays the ME won't even give me a chance to burn

Body doesn't tolerate glucose,sugars very well

I've tried low carb high fat,but it feels like starvation

I have had big belly well before having ME

And have had a relatively flat belly during times of ME,it didn't lead to remission

 

[Mary]

many people use HCL to increase stomach acid but I am not convinced that it works.

I tried it myself and I noticed burping ie carbon dioxide which is produced when urease reacts with urea in saliva.

Betaine HCL with pepsin worked very well for me for low stomach acid. Many years ago I often felt like food would just sit in my stomach, especially after a heavy meal. I'd feel full and uncomfortable and feel the same way the next day. Eventually discovered I had low stomach acid and when I started taking betaine HCL with pepsin with meals, my digestion improved a lot. The low stomach acid affected everything - my gallbladder and liver.

About burping - There's something called the baking soda burp test which can help determine whether someone has low stomach acid. From the Cleveland Clinic: (https://my.clevelandclinic.org/health/diseases/23392-hypochlorhydria)

The baking soda test​

The theory behind this at-home is that baking soda combined with stomach acid produces carbon dioxide (C02), which will cause you to burp. For the test, you’ll drink half a glass (4 ounces) of cold water combined with a quarter teaspoon of baking soda, on an empty stomach. Then time how long it takes you to burp. If it takes longer than three to five minutes, the theory goes, you don’t have enough stomach acid.

So the burping you talked about after drinking something acidic might not be related to urease.

@Davsey27 - my sister recently told me about acid reflux she had several times a week. She even started losing weight because she started eating less to minimize symptoms. I told her that acid reflux is often caused by low stomach acid. So reluctantly she started taking betaine HCL with pepsin - 2 capsules before a meal and It happened immediately - the first time she took the betaine HCL with pepsin, she had no more acid reflux.

She also had bloating and that has now stopped too. Her digestion is way better, so you might give this a try.

 

[sunshine44]

Betaine HCL with pepsin worked very well for me for low stomach acid. Many years ago I often felt like food would just sit in my stomach, especially after a heavy meal. I'd feel full and uncomfortable and feel the same way the next day. Eventually discovered I had low stomach acid and when I started taking betaine HCL with pepsin with meals, my digestion improved a lot. The low stomach acid affected everything - my gallbladder and liver.

About burping - There's something called the baking soda burp test which can help determine whether someone has low stomach acid. From the Cleveland Clinic: (https://my.clevelandclinic.org/health/diseases/23392-hypochlorhydria)



So the burping you talked about after drinking something acidic might not be related to urease.

@Davsey27 - my sister recently told me about acid reflux she had several times a week. She even started losing weight because she started eating less to minimize symptoms. I told her that acid reflux is often caused by low stomach acid. So reluctantly she started taking betaine HCL with pepsin - 2 capsules before a meal and It happened immediately - the first time she took the betaine HCL with pepsin, she had no more acid reflux.

She also had bloating and that has now stopped too. Her digestion is way better, so you might give this a try.

Really interesting.
I tried baking soda for my teeth and then clay. Over many months. My digestion significantly declines when ingesting these two. Even for oral care. To the point of swallowing difficulties with esophagitis annd severe acid reflux that chokes me in middle of night etc . and gastritis and sores.

When I remove them, things improve.

I have been told many times to try the hcl. I’m so concerned it will burn my sores in there and throw me off more. You have to take the entire capsule right? I struggle swallowing and digesting gelatin capsules. Wonder if I could still find a way.

 

[Mary]

@sunshine44 - baking soda neutralizes stomach acid so perhaps that's why your digestion goes downhill when you ingest it. If the baking soda lowers your stomach acid, that could cause acid reflux too.

The baking soda burp test is only a one-time thing that takes a few minutes, and it should be done on an empty stomach so that it doesn't disrupt digestion of something in your stomach.

I’m so concerned it will burn my sores in there and throw me off more.

What sores are you talking about? And I would think it's best to take the entire capsule. If you have trouble swallowing capsules, you might try apple cider vinegar with your meals to help your digestion.

 

[sunshine44]

@sunshine44 - baking soda neutralizes stomach acid so perhaps that's why your digestion goes downhill when you ingest it. If the baking soda lowers your stomach acid, that could cause acid reflux too.

The baking soda burp test is only a one-time thing that takes a few minutes, and it should be done on an empty stomach so that it doesn't disrupt digestion of something in your stomach.



What sores are you talking about? And I would think it's best to take the entire capsule. If you have trouble swallowing capsules, you might try apple cider vinegar with your meals to help your digestion.

I have a history of ulcers. Gi issues was how I first entered this illness many moons ago. Before it spread to the rest of my body.

Yes, exactly.
I think that’s entirely what’s happening when I ingest it. It immediately gives me bad acid reflux.

Good to know about test specifics.