4 rounds of antibiotics and still symptoms...
Posted: Fri Jan 22, 2021 10:41 pm
Hey everyone,
I need your help - Most likely I have been running around with HP for over four years now almost constantly dealing with symptoms, most of the time without even knowing that I have it. I am very exhausted and also feel pretty depressed. I just finished another course of antiobiotics and need some advice on how to determine eradication/next steps with my doctor.
Here is a rundown of my history, to give some context. For my current concrete question, please skip towards the end of this post.
12/2015: Started a relationship with who is now my wife (born in China) - this is relevant since she had similar stomach problems in her childhood, supposedly had HP test negative many years ago but still from time to time had occasional reflux issues that never went away. Might have caught HP from her in these months
08/27/2016: Sudden onset: Lower belly stiff and bloated, loss of appetite, general discomfort
08/29/2016: Light stomach pain or dull pressure feeling there (towards the back)
09/02/2016: First doctor visit, just gives me PPI bc. HP is less likely than normal ulcer problem
09/13/2016: Another doctor visit. 28x Lansoprazole 30mg 1 per day. Blood and Stool Test is ordered
09/15/2016: Blood test, which later turns out to be mistakenly only for Anemia and Celiac diseases, NOT for HP. No anemia or celiac found. Stool test for HP, which turns out worthless because they didn't tell me to stop taking PPIs.
09/26/2016: Symptoms worsen: Nausea, very bloated lower belly, acidic taste in mouth, PPI only improves symptoms slightly
13/10/2016: Blood and stool test for HP. Dont remember blood result, but stool test HP NEGATIVE
11/18/2016: Endoscopy. No PPI usage, only a few antacids prior. CLO Test ONLY in antrum area shows HP NEGATIVE. Inflammation and scarring seen in duodenum, which would explain symptoms. No cancer. No specific causes found for the inflammation and symptoms. Am told eating habits and stress are factors. I get put on longer-term PPI, thinking this would heal soon.
11/23/2016: Ultrasound found nothing
Symptoms (bloating, stomach pain, nausea, mouth acidity, belly gurgles+farts) don't stop in 2017 => On and off on PPI (Lanso), which does seem to help a bit because it removes the excess acid, but doesn't go away
xx/01/2018: Decide to test for HP again as symptoms dont stop => Stop PPI => Extremely acidic mouth, tooth pain/sensitivity, bloating/farting. Doctor says normally this should have healed after a few weeks, doesn't diagnose me either though. Eating chocolate and acidic fruits makes it worse, only few minutes after eating - avoiding this.
xx/01/2018: Stool test - HP POSITIVE. Why were stool AND endoscopy NEGATIVE before? No one seems to know. Starting with PPIs again after test to alleviate symptoms. Starting with Triple Therapy (Omeprazole+Clarithromicyn+Penicillin 7 days, after that continue with PPI).
Feeling great for months after finishing triple therapy - almost no symptoms
21/03/2018: Stool test to confirm eradication, four weeks after stopping antiobiotics - HP NEGATIVE. Everything seems fine for now.
06/2018: Start having a dull "pressing" pain at the top of my lower belly right below the ribcage (different symptom than before), especially before meals.
06/2018: We decide to test my wife for HP since she also experiences some reflux and slight stomach discomfort, especially in the recent few months, and due to transmission risk. Stool test shows HP POSITIVE FOR MY WIFE - takes normal 7-day Triple Therapy
2018: Wife still tests HP POSITIVE, gets another type of antibiotic.
2018: HP NEGATIVE FOR MY WIFE after second antiobiotic treatment.
07/23/2018: Gastrologist decides to do breath test to check whether HP is actually gone. Even if it's gone, healing can supposedly sometimes take many months, can manage symptoms with PPI. Breath test HP NEGATIVE. Looks like both me AND my wife are negative.
07-10/2018: Old symptoms coming back again, PPI only helps to a degree, also lower belly has dull pain - lower gut gets affected by excess acidity at the top? Also a stinging pain to the right (from my point of view) of my belly button sometimes occurs, always at the same location.
03/2019: PPI (Omeparzole/Lanso) 20mg/day, alleviates symptoms (especially bloated belly is now much flatter), taking this for a few months
11/2019: After a period of few symptoms, start taking Omeprazole to get rid of stomach pain and lower belly bloating for a few months
05-08/2020: Mild stomach pain/pressure feeling + neausea after eating, especially int he morning, gets quite frequent => Decision for another endoscopy.
11/18/2020: Endoscopy. Doctor right after says my stomach looks normal, can only conclude functional dispepsia or a nerve sensitivity for now. HP biopsy later finds HP POSITIVE.
01/06/2021: Start Triple Therapy: Again PPI + Clarithromycin + Amoxicillin 7 days - told the doctor I had this treatment in 2018, but wanted to go ahead anyway despite potential resistances. Symptoms immediately go away upon starting therapy.
01/12/2021: Symptoms come back: Stomach pain, nausea quite strong, especially in the mornings and after breakfast, stinging next to belly button.
01/26/2021: Another Triple Therapy: Metronidazol + Clarithromycin + Pantoprazol 7 days. Symptoms don't get better at all
04/22/2021: Stool-Test 8 weeks after last antiobiotics shows HP positive ->
04/27/2021: Quadruple therapy: Bismuth, Metronidazol, Tetracylin-Hydrochlorid + Omeprazole, 10 days
05/20/2021: In the 2 weeks after quadruple therapy, almost no stomach problems (but a lot of sneezing/allergy problems - i am an allergy patient. don't know why it flares up suddenly, maybe immune system is not focused on HP but rather now back to the pollen+dust mites etc?)
06/13/2021: Throat pain, upper abdominal pain + nausea frequent -> I get Azithromycin for 3 days against the throat infection -> funny enough, throat AND stomach problems go away for ~2 weeks. Might have been a mistake to take this though since it probably delays HP testing...
07/12/2021: Throat doctor takes a swab and identifies which antibiotics still work agains throat bacteria: Turns out, not very many anymore (e.g. resistant against amoxicillin -> got resistant by all those antiobiotics I took...) -> prescribes me Ciprofloxacin. I don't take it yet, since that is similar to Levofloxacin which is also used for HP treatment and I might need that to be effective against HP if it's still there. If I take it now HP might get resistant to that too!
07/21/2021: Stool test for HP turns out NEGATIVE. I am skeptical since I still have some symptoms, which were gone after taking the throat antibiotics. Discussed with gastro doctor, plan is now to do a breath test in a few weeks, do stomach AND gut endoscopy (nobody looked at my stinging pain near belly button) which allows for HP testing + sensitivity analysis, if then HP negative still, take care of the throat bacterium (HP eradication takes priority)
So yeah guys, what do you think, am I actually HP negative? The probabilities seem to say so - quadruple therapy is quite effective (lets say 20% chance of failure) and stool test rarely false negative (~5%?) so for both to occur i would need quite a bit of bad luck. On the other hand, since I had so many antiobiotics already, treatment might be less effective + stool test not super accurate since i only waited for 4 weeks after an antiobiotic, and i still have symptoms matching HP...
On the other hand again, maybe I am just doomed to have pain for the rest of my life? Or for a long time that it takes the stomach to heal??
Also super tricky now since I have daily throat pain, headache, fatigue due to the throat bacteria that I need to endure and hope it doesn't get worse while I take care of HP. Or is that not the right priority?
I need your help - Most likely I have been running around with HP for over four years now almost constantly dealing with symptoms, most of the time without even knowing that I have it. I am very exhausted and also feel pretty depressed. I just finished another course of antiobiotics and need some advice on how to determine eradication/next steps with my doctor.
Here is a rundown of my history, to give some context. For my current concrete question, please skip towards the end of this post.
12/2015: Started a relationship with who is now my wife (born in China) - this is relevant since she had similar stomach problems in her childhood, supposedly had HP test negative many years ago but still from time to time had occasional reflux issues that never went away. Might have caught HP from her in these months
08/27/2016: Sudden onset: Lower belly stiff and bloated, loss of appetite, general discomfort
08/29/2016: Light stomach pain or dull pressure feeling there (towards the back)
09/02/2016: First doctor visit, just gives me PPI bc. HP is less likely than normal ulcer problem
09/13/2016: Another doctor visit. 28x Lansoprazole 30mg 1 per day. Blood and Stool Test is ordered
09/15/2016: Blood test, which later turns out to be mistakenly only for Anemia and Celiac diseases, NOT for HP. No anemia or celiac found. Stool test for HP, which turns out worthless because they didn't tell me to stop taking PPIs.
09/26/2016: Symptoms worsen: Nausea, very bloated lower belly, acidic taste in mouth, PPI only improves symptoms slightly
13/10/2016: Blood and stool test for HP. Dont remember blood result, but stool test HP NEGATIVE
11/18/2016: Endoscopy. No PPI usage, only a few antacids prior. CLO Test ONLY in antrum area shows HP NEGATIVE. Inflammation and scarring seen in duodenum, which would explain symptoms. No cancer. No specific causes found for the inflammation and symptoms. Am told eating habits and stress are factors. I get put on longer-term PPI, thinking this would heal soon.
11/23/2016: Ultrasound found nothing
Symptoms (bloating, stomach pain, nausea, mouth acidity, belly gurgles+farts) don't stop in 2017 => On and off on PPI (Lanso), which does seem to help a bit because it removes the excess acid, but doesn't go away
xx/01/2018: Decide to test for HP again as symptoms dont stop => Stop PPI => Extremely acidic mouth, tooth pain/sensitivity, bloating/farting. Doctor says normally this should have healed after a few weeks, doesn't diagnose me either though. Eating chocolate and acidic fruits makes it worse, only few minutes after eating - avoiding this.
xx/01/2018: Stool test - HP POSITIVE. Why were stool AND endoscopy NEGATIVE before? No one seems to know. Starting with PPIs again after test to alleviate symptoms. Starting with Triple Therapy (Omeprazole+Clarithromicyn+Penicillin 7 days, after that continue with PPI).
Feeling great for months after finishing triple therapy - almost no symptoms
21/03/2018: Stool test to confirm eradication, four weeks after stopping antiobiotics - HP NEGATIVE. Everything seems fine for now.
06/2018: Start having a dull "pressing" pain at the top of my lower belly right below the ribcage (different symptom than before), especially before meals.
06/2018: We decide to test my wife for HP since she also experiences some reflux and slight stomach discomfort, especially in the recent few months, and due to transmission risk. Stool test shows HP POSITIVE FOR MY WIFE - takes normal 7-day Triple Therapy
2018: Wife still tests HP POSITIVE, gets another type of antibiotic.
2018: HP NEGATIVE FOR MY WIFE after second antiobiotic treatment.
07/23/2018: Gastrologist decides to do breath test to check whether HP is actually gone. Even if it's gone, healing can supposedly sometimes take many months, can manage symptoms with PPI. Breath test HP NEGATIVE. Looks like both me AND my wife are negative.
07-10/2018: Old symptoms coming back again, PPI only helps to a degree, also lower belly has dull pain - lower gut gets affected by excess acidity at the top? Also a stinging pain to the right (from my point of view) of my belly button sometimes occurs, always at the same location.
03/2019: PPI (Omeparzole/Lanso) 20mg/day, alleviates symptoms (especially bloated belly is now much flatter), taking this for a few months
11/2019: After a period of few symptoms, start taking Omeprazole to get rid of stomach pain and lower belly bloating for a few months
05-08/2020: Mild stomach pain/pressure feeling + neausea after eating, especially int he morning, gets quite frequent => Decision for another endoscopy.
11/18/2020: Endoscopy. Doctor right after says my stomach looks normal, can only conclude functional dispepsia or a nerve sensitivity for now. HP biopsy later finds HP POSITIVE.
01/06/2021: Start Triple Therapy: Again PPI + Clarithromycin + Amoxicillin 7 days - told the doctor I had this treatment in 2018, but wanted to go ahead anyway despite potential resistances. Symptoms immediately go away upon starting therapy.
01/12/2021: Symptoms come back: Stomach pain, nausea quite strong, especially in the mornings and after breakfast, stinging next to belly button.
01/26/2021: Another Triple Therapy: Metronidazol + Clarithromycin + Pantoprazol 7 days. Symptoms don't get better at all
04/22/2021: Stool-Test 8 weeks after last antiobiotics shows HP positive ->
04/27/2021: Quadruple therapy: Bismuth, Metronidazol, Tetracylin-Hydrochlorid + Omeprazole, 10 days
05/20/2021: In the 2 weeks after quadruple therapy, almost no stomach problems (but a lot of sneezing/allergy problems - i am an allergy patient. don't know why it flares up suddenly, maybe immune system is not focused on HP but rather now back to the pollen+dust mites etc?)
06/13/2021: Throat pain, upper abdominal pain + nausea frequent -> I get Azithromycin for 3 days against the throat infection -> funny enough, throat AND stomach problems go away for ~2 weeks. Might have been a mistake to take this though since it probably delays HP testing...
07/12/2021: Throat doctor takes a swab and identifies which antibiotics still work agains throat bacteria: Turns out, not very many anymore (e.g. resistant against amoxicillin -> got resistant by all those antiobiotics I took...) -> prescribes me Ciprofloxacin. I don't take it yet, since that is similar to Levofloxacin which is also used for HP treatment and I might need that to be effective against HP if it's still there. If I take it now HP might get resistant to that too!
07/21/2021: Stool test for HP turns out NEGATIVE. I am skeptical since I still have some symptoms, which were gone after taking the throat antibiotics. Discussed with gastro doctor, plan is now to do a breath test in a few weeks, do stomach AND gut endoscopy (nobody looked at my stinging pain near belly button) which allows for HP testing + sensitivity analysis, if then HP negative still, take care of the throat bacterium (HP eradication takes priority)
So yeah guys, what do you think, am I actually HP negative? The probabilities seem to say so - quadruple therapy is quite effective (lets say 20% chance of failure) and stool test rarely false negative (~5%?) so for both to occur i would need quite a bit of bad luck. On the other hand, since I had so many antiobiotics already, treatment might be less effective + stool test not super accurate since i only waited for 4 weeks after an antiobiotic, and i still have symptoms matching HP...
On the other hand again, maybe I am just doomed to have pain for the rest of my life? Or for a long time that it takes the stomach to heal??
Also super tricky now since I have daily throat pain, headache, fatigue due to the throat bacteria that I need to endure and hope it doesn't get worse while I take care of HP. Or is that not the right priority?