Gastrointestinal symptoms and Gastritis among CFS patients
- Thread starter dirk086
- Start date
Fogbuster
Senior Member
- Messages
- 269
Almost exact same issues as you. So many different types of sugars, dairy, fructose...you name it and a huge amount of food/drink chemicals which disagree with me in varying degrees. Sets of stress response and what feels like a cytokine cascade. Lots of brain fog and physical symptoms. But when I was tested a few years ago, nothing came up.
Thanks for the info, I'll take a look when my foggy brain clears up a bit!
Fogbuster
Senior Member
- Messages
- 269
I'm not quite sure if this is GERD or Gastritis, but whenever I eat hardly any acidic foods now, I have to rush to the loo and vomit it back up with this very acidic saliva. I had a smallish bottle of coke as a treat with a chicken burrito the other day and one hour later, I'm bringing it back up.. Sorry for the graphic detail!
J.G
Senior Member
- Messages
- 162
Chronic (moderate) gastritis here - have had it for at least 5 years (recent endoscopy reaffirmed it). All tests for H. Pylori negative. I have a constellation of gut symptoms, the most common being bloating, indigestion, proneness to diarrhoea, occasional stomach pains and tarry stools / fat malabsorption, and presumed slow transit. Many food intolerances. Colonoscopy normal, abdominal MRI normal. Gastroenterologist suspects autonomic involvement. ME/CFS specialist just shrugs.
I take high-grade probiotics. I've also found silymarin helpful, which through one mechanism or another seems to ease the extreme fatigue ever so slightly. (SIlymarin is known to help clear lactate; it is also proven helpful in NAFLD, which may in turn result / stem from dysbiosis - the exact chain of causality is disputed.)
Sources:
- Choi et al, Effect of Silymarin on Gluconeogenesis and Lactate Production in Exercising Rats (2016)
- Hellebrand et al, The potential of silymarin for the treatment of hepatic disorders (2016)
I take high-grade probiotics. I've also found silymarin helpful, which through one mechanism or another seems to ease the extreme fatigue ever so slightly. (SIlymarin is known to help clear lactate; it is also proven helpful in NAFLD, which may in turn result / stem from dysbiosis - the exact chain of causality is disputed.)
Sources:
- Choi et al, Effect of Silymarin on Gluconeogenesis and Lactate Production in Exercising Rats (2016)
- Hellebrand et al, The potential of silymarin for the treatment of hepatic disorders (2016)
Last edited:
andyguitar
Senior Member
- Messages
- 6,734
- Location
- South east England
Sounds like gastritis. Can take a month or 2 for gastric mucosa to heal if it has been damaged. So if you are able to tell what gives you gastric symptoms steer clear of them for a while, see how you get on. Raising the head end of your bed by a few inches can help to. Stick a couple of books under it or a couple of bricks.
Last edited:
I know this discussion was started 7 years ago, but I also have been diagnosed with chronic atrophic gastritis. The first time it was inactive, but it goes active periodically. I just had another Endoscopy and stomach is inflamed (gastritis) as well as duodenum is inflamed (duedenitis). In addition, I now have multiple (many!) stomach polyps. My symptoms are early satiety, uncomfortable fullness, lack of appetite, poor digestion (slow?), back up hours after eating, and more. The gastroenterologist had no recommendation except maybe to try accupuncture! He also suggested PPI's, but PPI's are a primary cause of Fundic polyps. (I have never used PPI's.) Also, I read in a medical journal article that the overwhelming consensus of medical researchers is that negative h. pylori along with duodenitis and gastritis equals LOW stomach acid (hypochloridia). I can't eat anything with microbials without triggering my immune system badly, so yogurt and probiotics are out. I have no idea what to do as I think dysbiosis might be a cause of the gastritis and duodenitis. I will check out those links you posted above. My illness started with an infection of unknown origin, and I was the only person in my family to acquire the infection. It started in my gut and appeared to access my nervous system as I was having episodes of mixing up words at one point. So, possibly it was an enterovirus. Anyone else with gastritis and/or duodenitis?
i have had all of these symptoms
i was diagnosed with CFS in the UK - but my partner and i, who were both very fit and well before hand, became ill at the same time and with the same symptoms in 2015 so i didn't really have faith in this diagnosis and continued digging
i did have PEM and fatigue was one of my main symptoms - but i also had all the gut related stuff
including food sensitivities - intolerances to dairy, carbs, fibre - and when my gut symptoms were worse - my other symptoms like fatigue etc would also get worse.
a fully ketogenic diet with limited fibre helped gut symptoms about 50% and overall symptoms a little - but it was clearly a sticking plaster - not addressing the root cause
i also had a gastroscopy that found gastritis - but no H-Pylori and no identified cause
also had colonoscopy and biopsies which also found no cause
later i had gut testing done which found v high levels of inflammation in the gut, a somewhat altered microbiome ( inflammation will do that - so no surprise), but no obvious parasite present
my partner had the same results - and all the same symptoms so again i was not satisfied with the lack of answers - and continued looking for a cause that could make 2 fit healthy people with with these weird symptoms
5 years later it turns out we both had a chronic bacterial infection with an organism called bartonella.
its a genus of small intracellular zoonotic bacteria that infects mainly the red blood cells and the cells that line the blood vessels. it is well known to cause gastritis and is thought to be the second most common cause after H-pylori.
in fact can infect the entire digestive tract from oesophagus to rectum. as it infects the endothelial cells that line the digestive tract - as these are very similar to the endothelial cells that line the blood vessels - and caused ongoing chronic inflammation there.
this tends to lead to various food intolerances, changes in bowel habit, abdominal discomfort, bloating etc etc
the systemic symptoms pattern is highly variable from host to host
and varying in severity - from v mild illness usually including body aches, pain and fatigue - to very severe pain syndromes, skin rashes, autonomic dysfunction issues like POTS, abnormal sweating, immune dysfunction like MCAS, and also various neuropathies.
mental illness from mild mood issues to frank psychosis are well documented but seem to be more common in younger people.
we had both been bitten by insects while on a picnic on farmland in summer 2014 - and our illness started a few months later - gradually at first - with some odd things coming and going - then full blown unrelenting fatigue in February 2015.
there is a great deal of overlap between the symptoms of CFS and infection with this bacteria - and because its an emerging zoonotic disease primary care doctors are very poorly trained on what to look for - medical text books only list "cat scratch disease" as a self resolving febrile illness and make no mention of its ability to cause chronic debilitating infections. in addition, blood tests for it are highly inaccurate - so much so that serologic tests for Bartonellosis have been withdrawn altogether in some countries ( eg UK NHS)
i had conventional blood tests for bartonella done that reported negative results -
then 2 years later after finding that the USA based Yale trained doctor who specialises in treating Bartonellosis over there uses an old WHO approved technique for identifying blood borne infections
to track his patients progress -
using that method i was able to see the definitive presentation of bartonella in my blood and begin treatment targeting it -
i tried to find out if the histology performed on my biopsies should have detected it - but i ran into a dead end - no one seemed to know exactly what diseases could be ruled out definitively via histology of biopsy. i suspect that because bartonella is extremely small( up to 400 would fit inside a single human cell) and does not stain well with most histology stains - it was simply not reported.
exposure in humans is quite high because cats and dogs that go outside regularly get infected( but may show no symptoms) and then can transmit the infection to humans via a scratch or bite and or by bites from their fleas. but biting flies, lice and even spiders are documented as competent vectors in the scientific literature. Studies show that people with outdoor lifestyles, farmers, veterinary workers and sewerage workers are all at elevated risk.
routine testing is problematic -multiple studies show very low sensitivity of serologic methods - and even using the Giemsa thin blood smear method - the organism is not uniformly distributed in the blood but instead occurs in infrequent clump of cells - so you need to look at a lot of slides to find it - which may not be economical for commercial labs to do. however once found its unmistakable - and this is a direct test - so no cross reactivity or false positive issues.
excellent primer on bartonella here from 2 of the worlds leading experts
slide showing how it looks in patients blood - notice how the infected cells are clumped together - not evenly mixed
my blood compared to a confirmed bartonella patients
after being sick for 8 years - now with treatment focussed on bartonella i am finally making progress. I have reached around 60% of my former health and am gradually improving.
note- i do not think for a minute that everyone with CFS/ME is suffering from Bartonellosis - but i do know my symptoms completely matched those listed as the most common symptoms on the surveys here on the PR forum. that my ESR and CRP were both low or normal despite ongoing infection - and that doctors are all too likely to pass people with unexplained fatiguing illnesses off as CFS - so i suspect a sub group of CFS patients are actually sick with some kind of infection like this - so i think its well worth considering.
its likely its far more common than is generally recognised so i now try to raise awareness about it, in the hope it will save a few people from years of pain and lost life.
What treatment(s) did you find most helpful?
vision blue
Senior Member
- Messages
- 2,000
@Garz good find and congrats
Ive suspected bartonella but couldnt find proof. Last year sent bloid to igenex havingvthem do both pcr and soneother test they do for bart. Still no evidence
A few years back, when UBiome was in existence, i samplds various sites, gut, nose, mouth, skin, mostly for fun as was interested in microbiome. Some of the sites sampled multiple times. To my surprise, Bartonella DNA showed up about three of my samples. I emailed with some expert or other who thought that that certainly implied infection but there was somebody else who argued that it’s much more common on the skin than people will acknowledge and it didn’t necessarily mean infection I believe the former person more except I never fully trusted UBiome so I wasn’t sure how confident to be in the results
Plenty of reasons for suspecting I could’ve gotten Bartonella because I spent the summer at friends house we both a Dogs we were ankle deep in a flea invasion insise all summer and we took long walks in a major wooded parland that’s now known for being a lyme reservoir.
Currently manage my G.I. symptoms but they flareup and I have been unable to gain weight. I don’t know if that’s at all a symptoms it’s tricky if everybody has different symptoms it’s pretty hard to prove
Pretty cool they were able to see it in your bloid. Hows your partner doing? Recovering? Recovering same rate as you? Had you not both gotten sick iat the same time given the same experiences one wonders how vigorously you would’ve pursued the infectious route for an organism thats so hard to prove. Oh inalso thinknive got plenty of endothelial damage
I recentky asked a lab if they can culture bartonella but theyre not set up for it. Requires different growing nedia than the standard strep food. Antway a way bark burner too kate thing for ne. Plenty of other things going on a d tbink i had mcas that lredated this even. .
Ive suspected bartonella but couldnt find proof. Last year sent bloid to igenex havingvthem do both pcr and soneother test they do for bart. Still no evidence
A few years back, when UBiome was in existence, i samplds various sites, gut, nose, mouth, skin, mostly for fun as was interested in microbiome. Some of the sites sampled multiple times. To my surprise, Bartonella DNA showed up about three of my samples. I emailed with some expert or other who thought that that certainly implied infection but there was somebody else who argued that it’s much more common on the skin than people will acknowledge and it didn’t necessarily mean infection I believe the former person more except I never fully trusted UBiome so I wasn’t sure how confident to be in the results
Plenty of reasons for suspecting I could’ve gotten Bartonella because I spent the summer at friends house we both a Dogs we were ankle deep in a flea invasion insise all summer and we took long walks in a major wooded parland that’s now known for being a lyme reservoir.
Currently manage my G.I. symptoms but they flareup and I have been unable to gain weight. I don’t know if that’s at all a symptoms it’s tricky if everybody has different symptoms it’s pretty hard to prove
Pretty cool they were able to see it in your bloid. Hows your partner doing? Recovering? Recovering same rate as you? Had you not both gotten sick iat the same time given the same experiences one wonders how vigorously you would’ve pursued the infectious route for an organism thats so hard to prove. Oh inalso thinknive got plenty of endothelial damage
I recentky asked a lab if they can culture bartonella but theyre not set up for it. Requires different growing nedia than the standard strep food. Antway a way bark burner too kate thing for ne. Plenty of other things going on a d tbink i had mcas that lredated this even. .
Last edited:
bart tests are problematic - especially serology
standard ELISA and IFA type tests for bartonella antibodies seem to be only around 20-30% sensitive - so miss threequarters of cases
igenex now have a multispecies bartonella immunoblot test now - which is probably better than regular serology - but the world renowned bartonella researcher Ed Breishwerdts published a paper on comparative testing in bartonella infected dogs and showed a regular western blot for bartonella was still v poor - look at how much overlap was present here
if yours was the multispecies western/ immunoblot then its likely slightly better than this - but i have not seen validation studies demonstrating a figure for Igenex's multispecies test
PCR of blood for bartonella is also found to be v poor sensitivity - in this case its not so much to do with the PCR technology itself - but more to do with the sampling media - it turns out in chronically infected persons the changes are relatively small of getting any actual bartonella dna in the 0.5ml sample that goes into the regular PCR machine - i have seen this in my microscopy slides - 9 can be free of any visible bartonella and the 10th can be full of it.
PCR of infected tissue is much much better - but sampling is invasive - lymph node biopsy for instance
this is the reason Galaxy Diagnostics do a triple draw approach for tier bartonella blood test - taking 3 different blood draws on 3 different days over 1 week - to maximise the chances of getting some actual bartonella in the sample - then culture that in a special culture medium based on the haemolymph liquid of insects ( the usual vector for bartonella ) and finally running PCR on that after 3 weeks
they call the test "triple draw DD-ePCR with culture" or some combination of those terms - and galaxy did publish a validation report on this method in one of the medical journals - so its the best documented test out there - but it is not cheap
the method i used - Giemsa stained thin blood smears - as used for malaria - but its time consuming and i don't know of any commercial labs offering it - i toyed with the idea of setting one up to provide this service - as i really do think there is more bartonella infections out there than people realise and i do think it would be providing a much needed service.
as you can gather - its taken me years to learn enough to figure out what has been going on with me - and it would be great if i could do something to reduce those years of suffering for others.
its been a bit of a journey
common antibiotics helped a little - but were not curative for me
i next tried some strong herbal antimicrobials based on the work of Stephen Buhner - which had a good deal of scientific evidence behind them - but i found i had to build up very slowly of the die off reactions were too strong for me to handle (most chronic bartonella patients have this issue during treatment with either antibiotics or natural antimicrobials)
however was able to gradually build up over time and my recovery began to move forward in earnest
i then added methylene blue to my regime- based on in vitro studies out of Johns hopkins university on its activity in stationary phase / persister cells of bartonella
i also used fibrinolytic enzymes - such as lumbrokinase or bromelain are also important parts of many doctors bartonella protocols - eg Dr. M - as bartonella causes excess fibrin to build up in the blood vessels - limiting both oxygenation of tissues - and protecting the bacteria from immune attack.
the other things that have helped me, as much as any antimicrobial drug or herb, are things that help the immune system fight the infection better itself
-focus on getting good sleep - via a variety of measures
-ketogenic diet - reducing the gut upset seems to take a load off the immune system
-exercise - walking daily and weights every other day- conditions the body and immune system
-active stress reduction strategies - eg meditation, mindset changes, walking in nature, yoga etc
as you can see getting over these chronic infections - when person has been sick for many years with them - is not just a pill popping exercise - but more a complete re-orientation of your life around recovery
for me recovery has been a matter of layering these things together over time at a pace my body could cope with without inducing so much herx like reactions that i could not function well enough to look after myself
but its clear i am finally on the right track
the story with my partner is a very sad one - she was the love of my life - we were extremely well matched and formed a great team that was strong enough to survive several years of both of us being debilitated with chronic illness - losing our jobs - our friends etc - and being extremely limited in what we could do - but Bartonellosis caused her to experience severe mental illness ( something it is well known for).
this included anxiety, depression, rage, paranoia, delusions, blacking out, self harm etc etc
she recovered physically sooner than i did (we both had the same pattern of overall symptoms - but each ha some things stronger than others - eg my fatigue was much worse - and her mental heath effects were much worse than mine).
this was around year 5 of illness - and after she did 2 years of herbs, full v strict ketogenic diet for 18months and 2 short courses of high dose clarithromycin for a severe ear infection.
unfortunately when her physical symptoms got a lot better - she was able to gradually exercise again - and then go back to work part time and then full time, but her mental health did not improve
when she could go back to work, and i could not, she began to see me as the problem holding her back from getting her old life back and putting this whole nightmare behind her. This was something she was desperate to do as she had found the entire experience utterly unbearable.
(she was in a repeating cycle of depression, then anger and rage and then depression again - so it was understandable that she found it unbearable)
she developed delusions - that i somehow was the cause of her illness - paranoia that i actually wanted her to be ill - and many other associated distortions of reality.
ultimately this resulted in us splitting up - despite everything i did to try to prevent it. she ultimately became fearful and unreachable.
it was a very strange thing to experience in someone you had been so close to - we literally spent 24/7 together for 4 years while we were both v ill. and i knew her so well - i could see the turmoil going on inside her - and see how she was torn - and how ultimately the delusions were winning over. she had very few stabilising influences around her - in terms of friends and family - and those she did have were ill equipped to help her with her issues.
she did agree to couples counselling with a psychiatrist - which initially went rather well - and it looked like we might be on the road to getting back to how things had been - but after a few sessions the psychiatrist started to focus more on my partner more - and then suggested solo sessions with just he and her - at which point she did a complete U-turn - wanted nothing further to do with it, said he was useless, didn't know what he was talking about etc etc. and became totally fixed on breaking up.
from the last contact i had i think she is still struggling with mental illness issues. clearly there is a lot of animosity there still - so i think she is stuck believing whatever she needs to believe to avoid tacking her real problems.
sorry for the ramble
yes - i do in some ways consider us fortunate in that if only one of us had become ill - we would have had far more avenues to consider in terms of a cause and the path to diagnosis would have been even more difficult - whereas we knew it could only be something from the environment - ie a toxin or pathogen.
bartonella was on this list of possible from around year 2 of illness/research - its just so hard to prove definitively
it was surprising to me how many doctors casually shrugged this off as insignificant( rathe than a significant clue) - or refused to consider us together as two healthy people who suddenly became ill with the same thing - preferring to see us separately and as separate unconnected cases - even Infectious disease doctors - it was very odd.
vision blue
Senior Member
- Messages
- 2,000
@Garz
I did do igenex immunoblot, multi species. I had considered galaxy but even one blood draw is hard fir me to pull off- i cant do three
Thats sad about your partner. At least its good shes physically ok now- and you can take pride in helping that come about. I have a couple pf friends who now become my best friebd only when they are sick and then run away so fast once they recover. its like wiley e coyote in a bugs bunny cartoon. Im forever associated with being sick in their minds
On docs downplaying, one think Ive been curious about is if so e peopele can harbor bartonella and not be made sick by it. If frue That complicates things and also suggeste whatever else it may be interecting with in those who are sick may need to be addressesmd too.
I did do igenex immunoblot, multi species. I had considered galaxy but even one blood draw is hard fir me to pull off- i cant do three
Thats sad about your partner. At least its good shes physically ok now- and you can take pride in helping that come about. I have a couple pf friends who now become my best friebd only when they are sick and then run away so fast once they recover. its like wiley e coyote in a bugs bunny cartoon. Im forever associated with being sick in their minds
On docs downplaying, one think Ive been curious about is if so e peopele can harbor bartonella and not be made sick by it. If frue That complicates things and also suggeste whatever else it may be interecting with in those who are sick may need to be addressesmd too.
I believe so. I think breischwert and co showed high rates of infection in two seperate studies. One in veterinarians and one in rheumatology patients.
I would have to find them to get the specifics but from memory not everyone who was infected was very sick. Many still working. But with various complaints like fatigue, pain etc.
These chronic illnesses are not binary. Infection-equals-sick-scenarios.
Often other factors that suppress or disregulate the host immune response are involved in precipitating fulminant disease.
Physical or mental trauma, chronic stress played a part in my case as i was a trouble shooter for international businesses.
We also hear of people only really going down hill after a bout of some Virus or another.
Other infections may also be in the mix. Each reducing the hosts ability to deal with the other.
pattismith
Senior Member
- Messages
- 3,988
I just figured that my low iron and vitamin B12 might be signs that I could have chronic autoimmune gastritis.
Chronic autoimmune gastritis can goes with very little gastric symptoms, so it's an important diagnostic to rule out.
Is there a treatment for it?
pattismith
Senior Member
- Messages
- 3,988
Iron and B12 injections... I havn't investigated much , however I can't see a causal treatment for it.
The thing is the stomach must be looked after carefully as there is a tumor risk.
bartonella also often causes a form of mild or relapsing anaemia - because the immune system tries to takeout infected red blood cells - and results in higher than normal red blood cell turnover - this causes you to lose iron from breaking down red blood cells anaemia can result
i had signs of cyclic haemolytic anaemia on some tests - and was tested by oxford university for 40 genetic causes ( its normally thought to be a hereditary condition ) - none were found
i get other very mild anomalies on blood tests - things like MCV and bilirubin values on upper or lower limit - then normal on the next test etc -
i had signs of cyclic haemolytic anaemia on some tests - and was tested by oxford university for 40 genetic causes ( its normally thought to be a hereditary condition ) - none were found
i get other very mild anomalies on blood tests - things like MCV and bilirubin values on upper or lower limit - then normal on the next test etc -
chronic erythrema of antrum with no known cause since ME outbreak here.
it was under control so well with pantoprazol 20mg but since i tried to switch to famotidine it exagerbated and never returned to baseline.
i am back on pantoprazole and it doesnt work anymore like it used to. Upped to 40mg and even added 10mg famotidine on top of it and it only manages the burning a bit.
my stomach is completely ruined at this point. i wish never quitted pantoprazol 20mg.
my biggest advice in this topic is:
don't listen to the people that try to talk you out of pantoprazole. if it works for you and i keeps your symptoms under control DONT STOP THE PANTOPRAZOLE IF IT WORKS FOR YOU. chances are it will never work again. I am now on 40mg panto + 10-20mg pepcid + DGL + aloe + zinc l-carnosine + bpc-157 and it doesnt work half as good as only 20mg panto used to wich defeats the whole point of trying to stop it. now i take more medicine with less effect.
belize44
Senior Member
- Messages
- 1,781
I have gastrointestinal issues that come and go. Sometimes it is gastroparesis. I take Omeprazole before bed and use Sonne's bentonite clay when I get issues with digestion. I try to remain sitting after a meal to give myself time to digest.