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So sick of sickness!

Hopeful1976

Senior Member
Messages
345
Nausea is my major symptom. I've had it for years but when I relapsed 3 years ago, it became much much worse and I can not get it under any kind of control. I take l.reuteri and l.rhammosus. I am gluten free, eat zero sugar (even no fruit), no yeasts ect, i have a very healthy diet, very natural. Yet the nausea and the weird depression symptoms and legarthy, which over the years I've learned all go hand in hand when the gut is bad, is so so bad. I'm pretty sure my cfs/m.e originates in my gut and is perpetuated by it. Can anyone offer any help to me? I feel like I've exhausted everything to fix my stomach. Thanks in advance.
 

Chocolove

Tournament of the Phoenix - Rise Again
Messages
548
I feel like I've exhausted everything to fix my stomach.
Not to rehash everything, but we don't know what you've tried... Perhaps you keep an ongoing log or blog of what you've done?
Have you tried ginger for nausea?

also have this sour taste in my mouth
Have you looked into GERD or acid reflux?

Maybe try combos of symptoms in online symptom checker searches to help find the cause or condition? Figuring out the buzzwords - their terminology vs. one's own is always a concern.
https://www.medicinenet.com/nausea/symptoms.htm
https://www.mayoclinic.org/symptom-checker/nausea-or-vomiting-adult/related-factors/itt-20009075
https://patient.info/doctor/persistent-nausea-or-vomiting

Nausea | Women's Health

https://www.womenshealthmag.com/health/nausea
May 9, 2013 - Common abdominal causes of nausea include inflammation of the liver (hepatitis) or pancreas (pancreatitis); a blocked or stretched intestine or stomach; gastroesophageal reflux (GERD); irritation of the stomach, intestinal lining, .... Eat small, frequent meals to allow the stomach to digest foods gradually.

http://www.wakehealth.edu/Health-Central/Unexplained-Chronic-Nausea/
https://www.healthline.com/health/nausea-and-vomiting#causes
https://www.healthline.com/health/gerd/nausea
...
 

Mary

Moderator Resource
Messages
17,334
Location
Southern California
@Vicki Cole - you sound a little like how I felt when my liver was overloaded with toxins. My digestion was off (though not nausea per se), I was tired, lethargic, mentally dull or spacey. My chiropractor who does muscle testing found this problem and I did a liver detox under his supervision. My digestion etc. improved a great deal afterwards. I also had to start taking betaine HCL with pepsin with meals because I was low in stomach acid.

People with heavy metal toxicity can have a metallic taste in their mouth. Your sour taste is different but might be related.

My chiro helped me so much with muscle testing sort out several different digestive problems - I would be much worse off if I had never seen him so you might want to look into this. One place to find practitioners who do this is the Standard Process website, which has a search feature for practitioners who use their products. Many chiros and other health workers use SP products.
 

Hopeful1976

Senior Member
Messages
345
Thank you for your replies. I will look into what's been advised. I have a strong feeling this is bacteria related. When my gut is bad, all m.e symptoms worsen. I've tried numerous Probiotics, they sometimes improve stuff but not for long. I wish the gut was really looked into as I know it's a major factor in this disease.
 

Mary

Moderator Resource
Messages
17,334
Location
Southern California
Low stomach acid has been linked to SIBO (small intestinal bacterial overgrowth) and many people with ME/CFS have low stomach acid. A simple to test to check is to dissolve 1/4 tsp. baking soda in 8 oz. of water and drink it on an empty stomach. If you haven't burped within 2 minutes. it can be an indication of low stomach acid. I've been taking betaine HCL with pepsin for many years and it has helped my digestion a lot.
 

Mary

Moderator Resource
Messages
17,334
Location
Southern California
@Vicki Cole - I just realized I didn't suggest you talk to a doctor about testing for your gut. I'm so used to doing things on my own, it didn't even occur to me. But there is testing available which potentially could identify what is going on. There are stool analysis tests by Geneva Diagnostics and I'm sure other testing is around. It might be good to change the title of this post to reflect that you want help with your gut. People often just read the titles of posts in order to decide whether to read them or not, and your title says nothing about the gut.
 

gregh286

Senior Member
Messages
976
Location
Londonderry, Northern Ireland.
Nausea is my major symptom. I've had it for years but when I relapsed 3 years ago, it became much much worse and I can not get it under any kind of control. I take l.reuteri and l.rhammosus. I am gluten free, eat zero sugar (even no fruit), no yeasts ect, i have a very healthy diet, very natural. Yet the nausea and the weird depression symptoms and legarthy, which over the years I've learned all go hand in hand when the gut is bad, is so so bad. I'm pretty sure my cfs/m.e originates in my gut and is perpetuated by it. Can anyone offer any help to me? I feel like I've exhausted everything to fix my stomach. Thanks in advance.

Yes I get this with malaise crashes.
Only one thing works, high dose lemon water.
I mean like 6-8 lemons over the day, 2-3 days in row. Hot water.
I think its sluggish bile or something like that,
 

Hopeful1976

Senior Member
Messages
345
@Vicki Cole - I just realized I didn't suggest you talk to a doctor about testing for your gut. I'm so used to doing things on my own, it didn't even occur to me. But there is testing available which potentially could identify what is going on. There are stool analysis tests by Geneva Diagnostics and I'm sure other testing is around. It might be good to change the title of this post to reflect that you want help with your gut. People often just read the titles of posts in order to decide whether to read them or not, and your title says nothing about the gut.
I'm going to go ahead with gut testing after Xmas. My instinct is saying this is dysbiosis... it's been years that I cannot get respite, maybe only ever for a few weeks with the right probiotic but then it stops working :( I'm at the end of my tether with it now.

Also, I've tried betaine ect but I felt worse :( I wonder what that's about?

Thanks for your support. I'm in the UK and I feel very isolated at times with this.
 

Hopeful1976

Senior Member
Messages
345
Yes I get this with malaise crashes.
Only one thing works, high dose lemon water.
I mean like 6-8 lemons over the day, 2-3 days in row. Hot water.
I think its sluggish bile or something like that,
Lemons make my gut feel worse :( I can't understand it.
 

Hopeful1976

Senior Member
Messages
345
Low stomach acid has been linked to SIBO (small intestinal bacterial overgrowth) and many people with ME/CFS have low stomach acid. A simple to test to check is to dissolve 1/4 tsp. baking soda in 8 oz. of water and drink it on an empty stomach. If you haven't burped within 2 minutes. it can be an indication of low stomach acid. I've been taking betaine HCL with pepsin for many years and it has helped my digestion a lot.
I'm going to try this later. Thanks
 

Mary

Moderator Resource
Messages
17,334
Location
Southern California
I'm going to go ahead with gut testing after Xmas. My instinct is saying this is dysbiosis... it's been years that I cannot get respite, maybe only ever for a few weeks with the right probiotic but then it stops working :( I'm at the end of my tether with it now.

Also, I've tried betaine ect but I felt worse :( I wonder what that's about?

Thanks for your support. I'm in the UK and I feel very isolated at times with this.

Hi @Vicki Cole - I don't know if you're aware of this but there's a huge UK presence on this board. UK members can give names of doctors, etc. that might be able to help - at least you wouldn't feel so alone! You might want to put that you're in the UK under your avatar. If you go into your profile, you can put your location. And you can also of course indicate that you're in the UK in the title of a thread which will get people's attention.

I'm glad to hear you're going to get the testing done - keep us posted --
 

Hopeful1976

Senior Member
Messages
345
I didn't know, thanks! It would be good to know if it's possible to make the gut better, if not m.e. My gut is by far the seat of most of my suffering :( I've tried for years a strict diet (I have not eaten any sugar in years!) Probiotic's, natural herbs ect; yet to no avail. I'm fairly new to PR so thanks so much for your advice. I appreciate it
 

Mary

Moderator Resource
Messages
17,334
Location
Southern California
One last thing (I keep thinking it's one last thing and then I think of something else! ;)) A couple of years ago I had diarrhea for at least 6 months. I tried several different probiotics and nothing made a difference. I had testing for SIBO and it was negative. Finally I tried Trader Joe's kefir (I think regular kefir would be just as good) and within a week it had cleared up. I now drink it about twice a week and it keeps my gut in good shape. I'm like you, I hardly ever eat sugar, my diet is very good. Also, I tested strong for a dairy allergy over 20 years ago, but I do okay with the kefir and I do eat cheese in moderation. Way back when I had been eating yogurt almost daily I think.

And one last thing again! :D If you put the "@" sign in front of someone's user name when you reply like this @Vicki Cole or this @Mary, they will get an alert that you have responded to them. It's very helpful.

Okay, that's all! (I think)
 

RYO

Senior Member
Messages
350
Location
USA
Nausea and disequilibrium are difficult symptoms for me during severe relapses. Low dose zofran with analgesics always gets me through my worst flares. However, constipation is common side effect. I've also been trying bovine colostrum. Too early to tell if its helping.

I hope you find something that works for you.

Always good idea to rule out other causes ie gastroparesis.
 

Mary

Moderator Resource
Messages
17,334
Location
Southern California
Hi @Mary I tried this test and guess what?... no burping for like 15 min's or even more after taking the solution! Does this mean I have low stomach acid??

I can't say for certain but I think it's a strong indication that you may have low stomach acid. My doctor told me to start with one capsule of betaine HCL with pepsin before meals and to titrate up to a dose where my stomach felt "acidy" and then to back off by one. It sounds a little funny but then I felt what he was talking about - the "acidy" feeling - when I got up to I think 4 capsules, and then backed off to 3 and I was fine. This is what I've been taking for years: https://www.swansonvitamins.com/q?kw=betaine+hcl But you're in the UK, I don't know if Swanson's ships there. This is also a good product from iherb which does ship to the UK: https://www.iherb.com/pr/Now-Foods-Betaine-HCL-648-mg-120-Veggie-Caps/398

The pepsin is important for digesting protein. If I eat a meal of just a salad or just have fruit etc I don't need it. But if I have something with meat or protein which is harder to digest, that's when I take it.

If your stomach acid is low, it can affect your liver and your whole digestive process. And also you won't be properly absorbing nutrients. Low thiamine has been associated with low stomach acid. I remember years ago my chiropractor told me I had to remedy my absorption problem before I started adding in supplements.
 

Hopeful1976

Senior Member
Messages
345
Can you still have gastritis with low stomach acid? I was always under the impression that you only got gastritis if you had too much acid. It's all confusing! A few years back I had an endoscopy that said I had mild gastritis. But I've always had such a bad stomach (see above) and it's only been this week that I'm beginning to think I have low acid - 2 bicarbonate of soda tests with zero burping!

My dog is ace huh (my dog avatar!) A total rocker :)