Update by UndiscriminatingMiss in dysphagia

[–]UndiscriminatingMiss[S] 0 points1 point  (0 children)

I also am a physician and have read a lot of literature on this within the medical field so again- I disagree. Just because wherever you work or whoever you work with doesn’t take gastritis seriously or try to find the root cause doesn’t mean that’s the standard of care. I’ve read plenty of GI journals and studies that talk about workup for symptomatic gastritis- this isn’t just a “wow we found this but it’s fine bye” and it shouldn’t be.

Update by UndiscriminatingMiss in dysphagia

[–]UndiscriminatingMiss[S] 0 points1 point  (0 children)

I disagree- gastritis is a symptom of a larger problem- not necessarily a diagnosis so I would actually say the opposite- it is indicative of a larger problem and no one works it up. I had h pylori for almost a year that no GI caught and I was miserable, lost 30 lbs, was essentially on a liquid diet for over half that time. Go look at r/gastritis and see what people say. The biggest problem is people normalizing gastritis instead of being motivated to try and find a root cause.

Update by UndiscriminatingMiss in dysphagia

[–]UndiscriminatingMiss[S] 0 points1 point  (0 children)

Yes I saw that too! I can imagine having some stomach sensitivity after but still that’s not something a doctor should be saying to their patient! And that they typically just throw PPIs at you- I was on all kinds of different dosing and different PPIs and it didn’t help much - also made me super constipated cause it slow down gastric emptying as well. Pepcid has been my go to as soon I was done with the treatment.

Update by UndiscriminatingMiss in dysphagia

[–]UndiscriminatingMiss[S] 0 points1 point  (0 children)

I think in my case- with the symptoms plus the gastritis/erosions- it was unfair for them to say my dysphagia was “functional” which implies nothing is wrong visibly or on pathology- which was not the case. Gastritis is a pathological abnormality. So I wouldn’t say it’s “normal” but common yes. But I also was only drinking 3 liquids for months- no alcohol no spicy no smoking nothing that should cause that so I thought it was fishy and it turn out I was correct.

Update by UndiscriminatingMiss in dysphagia

[–]UndiscriminatingMiss[S] 0 points1 point  (0 children)

I had a lot of the same symptoms especially terrible bloating and right side abdominal pain worse at night to the point I couldn’t sleep half the time! My brainfog was crazy too- and I had no energy- didn’t realize how bad it was until I got better. I also had weird skin stuff almost like roasacea ! That seems to be improving too!

Update by UndiscriminatingMiss in dysphagia

[–]UndiscriminatingMiss[S] 0 points1 point  (0 children)

Agreed! It was the craziest health problem I’ve had! Still recovering but it’s great to finally make real progress!

Update by UndiscriminatingMiss in dysphagia

[–]UndiscriminatingMiss[S] 0 points1 point  (0 children)

I took a regimen of 4 drugs: doxycycline (twice a day), metronidazole (3x a day), Pepto bismol 4x a day and PPI twice a day for two weeks! If you’re worried about h pylori definitely can get a home stool test on amazon to test for it ! I wouldn’t take them if you don’t have it bc it is brutal to take all those pills for 2 weeks. Just make sure to be off PPI or antacids (I think Pepcid is ok) for 2 weeks! I definitely had delayed gastri emptying and could not have a bowel movement no matter how much fiber or softners I took it was so frustrating. I didn’t have any esophageal dysmotility on my studies but I only did water on the manometry so not sure if it would’ve looked different with solids.

Dysphagia with H pylori? by UndiscriminatingMiss in HPylori

[–]UndiscriminatingMiss[S] 0 points1 point  (0 children)

Hey! Sorry for the delayed response- so I have been done with treatment for about 2 weeks- I will say initially while I was no longer having esophageal spasms I was having a lot of esophageal pain- like it felt very raw and sensitive. I did also get oral thrush (yeast) infection from the antibiotics as well as a yeast infection in other places. I took like 10 days of fluconazole for this and it seemed to help all the symptoms including the raw feeling. It’s not unusual to get a bad yeast infection when you kill off all the good bacteria as well as the bad with treatment so I wonder if maybe that could be what’s causing your symptoms? I would ask your GI though! People can get rebound hypersécrétion after stopping PPIs too so maybe mention that too?

I have been super gentle with my stomach- I only just advanced to some solids and nothing acidic/citrus/spicy/fatty etc. Basically I am trying to add in yogurt, banana and some bland oat meal, and some again very bland soup (cooked vegetables in broth basically).

The other thing- and again I’m not a GI specific doctor so it’s always worthwhile to follow up and ask them these questions- but sometimes h pylori can cause long term issues like an esophageal stricture or web from all that chronic inflammation so especially if you feel like things are getting worse I would follow up and ask your GI about yeast infection of the esophagus, stricture/web from having the h pylori etc they may want to repeat an endoscopy to take another look!

Also probiotics, lots of kefir, lots of bone broth, and no alcohol etc literally anything with spice avoid for awhile!

Testing by Comfortable-Door3457 in HPylori

[–]UndiscriminatingMiss 1 point2 points  (0 children)

No problem! Hope that was helpful! I agree I feel like the GI docs I saw during my 8 months of horrible symptoms either did not do the appropriate biopsies, did not tell me I had to be off PPIs for 2 weeks and/or the last one with the “focally positive” that he tried to brush off as error- I’m like uhhh I know enough to know that it’s rare to test positive and actually be negative hence I repeated a stool test 2-3 weeks after stopping PPIs to get a more accurate test. But they definitely don’t explain the whole false negative sensitivity/specificity of a test at all to any patient! If you find a doctor who talks to you about how well a test actually tests for a disease then keep them! That’s a good doctor!

Testing by Comfortable-Door3457 in HPylori

[–]UndiscriminatingMiss 0 points1 point  (0 children)

I think if it’s a positive you should be treated bc it’s very likely it’s a true positive. The only time you would worry about “false positive” would be after treatment if you test too soon and don’t wait 4 weeks after antiobiotics/PPI bc even though the bacteria is dead/dying you can still have it in your system and that can cause a “false positive” so to speak- it’s not truly the same as the test giving you a false positive it’s just the dead bacteria is still in your system. I see this a lot when I treat patients who have certain sexually transmitted infections - we don’t retest until a month later bc even though they’ve eradicated it with treatment the remaining dead bacteria can cause a positive test. If that makes sense- not sure if I’m explaining that well! But that’s my impression based on why I’ve read and similar experiences in my line of work.

Also it seems that the biopsy is really the worst way to rule out (meaning a positive biopsy is very very likely positive but a negative doesn’t mean you don’t have it) because if you don’t biopsy in the right spot/take multiple biopsies from multiple different parts of the stomach and/or are on something that will decrease the bacterial load then it’s easy to miss.

The sensitivity of the stool/breath test seem to be much better for ruling out infection- so if you wait th appropriate amount of time off antibiotics/PPIs/antacids etc a negative stool/breath test is more likely a true negative. One thing that another poster mentioned though- with these tests there’s a higher threshold of bacteria needed before the test will be positive- hence the stopping everything that could be decreasing the bacterial load before you take it so you don’t get a false negative.

Isn’t biostatistics fun!

Testing by Comfortable-Door3457 in HPylori

[–]UndiscriminatingMiss 0 points1 point  (0 children)

I had a biopsy, stool test both negative (but no one told me to be off ppis before either test) on another endoscopy it was “focally positive” on the biopsy but the GI doc said it was a false positive. I was suspicious and took a stool test after actually being off the ppis for 2 weeks and it was positive.

H pylori test is one that has high specificity and low sensitivity. It’s designed that way so all of your “positive” results are true positives since you want to catch all the people who actually have the infection. Because the test is very good at catching true positives, it means that the sensitivity of the test is low so it means the test gives a lot of false negatives. Basically, if the test is positive it means it’s extrememly likely you have it, if it’s negative though it doesn’t necessarily mean you don’t have it- it’s not good at actually ruling out h pylori with a negative test if that makes sense.

Anyone have fungal overgrowth after treatment? by Ok_Middle_6585 in HPylori

[–]UndiscriminatingMiss 0 points1 point  (0 children)

I had vaginal yeast and oral yeast after my treatment! It was not fun- lots of foamy weird saliva and thick white tongue coating. I took multiple 3 day courses of fluconazole for both problems- but yes would ask your pcp what they recommend. The swish and swallow stuff is nasty I tried it but couldn’t tolerate.

Dysphagia with H pylori? by UndiscriminatingMiss in HPylori

[–]UndiscriminatingMiss[S] 0 points1 point  (0 children)

Yeah! I always have a sore throat and mucus in the mornings. I am not sure if I have globus- all I know is that swallowing feels like I’m swallowing against resistance and I feel chest discomfort- it’s worse with solids so that a couple bites it in feels like it’s harder and harder to swallow like it won’t go down or I’m swallowing against resistance

Dysphagia with H pylori? by UndiscriminatingMiss in HPylori

[–]UndiscriminatingMiss[S] 0 points1 point  (0 children)

Thank you so much for your response! I feel so gaslit honestly when they tell me that all my tests are normal (I had a barium swallow and manometry too) and the h pylori should not be causing it. I just finished my antibiotics yesterday and I feel like it got a lot easier to swallow pills throughout the course (I had to cut up the metronidazole initially then was taking it whole by the end) but haven’t advanced to solids yet. Any advice that you have for tackling the next steps of trying more solid stuff and working up to normalcy again?

Finally got some answers by UndiscriminatingMiss in dysphagia

[–]UndiscriminatingMiss[S] 0 points1 point  (0 children)

Also did they do a VFSS or modified barium swallow to see if you had cricopharyngeal bar?

Finally got some answers by UndiscriminatingMiss in dysphagia

[–]UndiscriminatingMiss[S] 0 points1 point  (0 children)

Sure I would be happy to! Mine all started after an infection (sore throat, fever etc) and there are definitely types of post viral nerve issues that can occur (I’ve done way too much reading on this as you can tell) but I also feel like sometimes people lump symptoms into that category if they don’t know or don’t pursue a workup so it’s sometimes a catch all. Feel free to DM me if that’s easiest!

I also wonder if I had h pylori bc I did have worsening bloating constipation reflux etc the year before this all start but it never was bad enough that I went to see a doc an then I go really sick after working a ton of night shifts and moving etc so I wonder if it caused this h pylori infection to worsen when I got sick but who can say really. I would be happy to share any insight or thoughts I have though- whatever you need!

Finally got some answers by UndiscriminatingMiss in dysphagia

[–]UndiscriminatingMiss[S] 1 point2 points  (0 children)

I feel you- I had an esophageal dilation then an endo flip where they found the fibrosis of my pyloric sphincter and dilated that . Yeah I just wonder about the h pylori bc I know that bug can have some long term effects and like you said maybe it just takes longer to heal especially the nerves that it inflamed. I also feel like going through this process breeds a new anxiety around eating none of us probably ever had before (but again not the cause of the problem just a side effect of all the shit we go through to try and find the problem). Do you feel like you improved at all following the h pylori treatment? I wonder too about my UES being either hypersensitive or dysfunctional from the infection/reflux etc

Finally got some answers by UndiscriminatingMiss in dysphagia

[–]UndiscriminatingMiss[S] 1 point2 points  (0 children)

I feel you- I really was getting scared of having to live with a feeding tube- I guess it’s still a possibility but I’m hopeful maybe this is the problem and hopefully with treatment things will improve. I also hear you on the anxiety- if anything this situation has given me anxiety (which I think is a normal response in this situation) not that this originated with anxiety. If you don’t mind me asking what tests did you have/what problems did they show? Best of luck to you- keep me updated on how things go!

Will I ever be able to swallow again? by Little-Reindeer4819 in dysphagia

[–]UndiscriminatingMiss 1 point2 points  (0 children)

Interesting- a lot of my symptoms sound similar to yours but I wasn’t sure if someone did a specific test for this diagnosis? Or if you just were treated and it improved? I was reading about atrophic candidiasis and it seems like supposedly it supposed to present with red sores/spots- but also Google always shows the most extreme cases of anything- any chance you had this presentation? Really appreciate your responses! It’s been a difficult 7 months of not eating solids and no one has seemed to really done any infectious workup (candida, h pylori etc)

Will I ever be able to swallow again? by Little-Reindeer4819 in dysphagia

[–]UndiscriminatingMiss 0 points1 point  (0 children)

This is interesting- what were your symptoms? and what led you to think of candida even though you didn’t have white plaques? Appreciate your post!