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2 yrs and half & counting - breath test +ve stool - ve - 3 courses failed

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glglak
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Joined: Sat Feb 16, 2019 12:22 pm

2 yrs and half & counting - breath test +ve stool - ve - 3 courses failed

Post by glglak » Sat Feb 16, 2019 12:48 pm

Hi guys,

30 m Egyptian here living in Sydney, Australia, my symptoms started 3 years ago with bad heart burn which drove me to ER units couple of times in Egypt till I found from gastronlogist later on its due to acid reflux, got Nexium/Zantac and followed a good diet which fixed the issue for almost a year, but something wasn't feeling right, burning sensations and burping a lot when I break diet and I'm also a smoker and addicted to coffee so thought that's the reason, moved to Australia and went to many GPs and did dozen of blood work and ultra sounds all came back normal, so I've been advised it must be acid reflux and had a chronic cough which I thought it's because of Sinusis or acid reflux, I've been described nexium over and over again and was feeling good when taking it like no symptoms at all no cough, burning sensation or burping then later on I visited Egypt and decided to do a h pylori stop test cz I read online about it, it turns out positive so I did h pylori line test which showed I got 3 strains of it but not (Cag - Vac) strains, my specialist in Egypt advised me to manage it with diet and try to better my immune system in a watch and manage strategy rather than treating cz he thought it's not very dangerous due to these strains also because he believed my symptoms were coming mainly from bad life style (smoking, coffee) rather than h pylori itself and he said everyone got it these days without even realising and it could be treated only when you have symptoms..

Anyway went back to Sydney and to my gp who advised to start treating it and said treatment is simple so took first course:
1- amxolycin/clayerthomin/ppi for 7 days
Results: 2 months later breath test and still positive (4 thousand count)
GP offered
1- amxolycin/meta something(like flagyl) /ppi for 7 days
Results:4 months later still positive on breath test but with very low count relative to last one (300)

Went to specialist who said first two courses considered first line so he'd given me 2nd line treatment:
1-levoflaxicyn /amxolcyin/ppi 10 days and asked me to see me in few months

So taken them and after 3 months (did breath test and stool test)
1- breath test positive
2- stool test negative

Repeated the same tests twice and every time stool test come back negative and breath test positive

I have no serious symptoms at all since first round of treatment, sometimes due to lifestyle I get acid reflux but I controlled it completely by taking and being on probabtics (on and off) for almost a year, also sometimes very little discomfort/burning sensation that doesn't imped me I feel it but it goes away on its own with no medications.

I have been diagnosed with chronic sinusis and severe vitamin d deficiency/did many blood work and ct scan on nose area/x rays/ultra sounds and everything else looks good

My next plan to have endoscopy with biopsy which I'm afraid from and not sure if it's nessascry

My questions :
1- how come stool test always negative and breath test always positive
2- having mild symptoms could mean ulcers/inflammation
3- is there a way to find out what's going on in stomach without invasive procedure (I just want to exclude serious stuff but not worried about h pylori cz it could be there if breath test is more accurate like doctors says)
4- I'm not resistent to antibiotics generally, why my treatment fails? I always tend to follow strict guidelines while taking it including stopping coffee/smoking and taking probabtics/manuka honey u name it..

And also general advise what should I do? Should I be very worried? I'm having general anxiety disorder(recently) not sure if related to h pylori before I was having this weird discomfort around ribs/back (might be pylori related or just vitamin d deficiency)

Let me know your opinions/share ur experiences and give me more hopes

Also does anyone knows a specialist that is very good in Sydney focused on H Pylori??

all the best

Helico_expert
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Re: 2 yrs and half & counting - breath test +ve stool - ve - 3 courses failed

Post by Helico_expert » Sun Feb 17, 2019 12:15 am

Hi,

Thanks for sharing your story. I'll keep the response short.

1. All H. pylori cause inflammation in the stomach.
2. With or without Cag or Vac has little correlation with disease outcome.
3. Although most people with H. pylori have no symptom. But for those with symptoms, it'll only get worse as they grow older.
4. Since your previous treatment failed, your H. pylori is very likely to be resistant to Clarithromycin, Metronidazole and Ciprofloxacin. These three antibiotics cannot be used any more.
5. breath test and stool test are both very accurate. getting in consistent result from both test suggest that something is wrong. Do you know how positive is your breath test? sometimes, when your stomach is not acidic enough, some other bacteria can start growing and can give false positive result.
6. endoscopy is a good way to find out the overall stomach condition. histology can tell if your inflammation is recovering.

glglak
Posts: 8
Joined: Sat Feb 16, 2019 12:22 pm

Re: 2 yrs and half & counting - breath test +ve stool - ve - 3 courses failed

Post by glglak » Sun Feb 17, 2019 12:37 am

Thanks a lot of your reply, much appertiated...

In regards to breath test, results were as following:
First time : 4500 and cut off value was 200, then two courses of antibiotic from gp
Then result was 319 and cut off value positive > 200
Then treatment from specialist (levoflaxcin etc)
Then breath test in Egypt (250 and cut off value 50)
Breath test in Sydney (512 and cut off value 200)
Stool test done twice in Egypt and once in Sydney after third treatment with last two breath test and came negative for h pylori

Stool culture didn't indicate parasites /other bacteria in stool and stool was formed etc so no issues there..

I got other questions:
1- could inflmmation imped the cure of h pylori?
2- could curing inflmmation by changing life style to the pattern I used to when I was on antibiotics lead to cure of h pylori with next treatment or without it?
3- is having acid reflux sometimes if not on probabtics can mean higher acid which contradict with the idea of having lower acid in stomach?
4- I have 14 tooth with filling and other dental issues to be fixed, could it make breath test false +ve?
5- is delaying endoscopy couple of months with restrict change in life style and then doing breath test a bad strategy/waste of time?
6- can chronic sinusis affect h pylori treatment or h pylori contribute to it?
7- is there any bad explanation for having stool test negative and breath test positive or is it good explanation?
8- what should I ask my specialist about? Are there other tests that can help in diagnosis?
9- I have vitamin d Def. (severe one 12) when I started to take capsules 1000mg it started to hurt my stomach, like feeling a very little burning sensation on left upper side that is a bit consistent and when I stopped it it disappeared, does that mean the vitamin is the reason or could it be healing inflammation or something?

Thanks in advance, I'm very worried so sorry about the many questions

Helico_expert
Site Admin
Posts: 3360
Joined: Wed Mar 02, 2011 7:20 am

Re: 2 yrs and half & counting - breath test +ve stool - ve - 3 courses failed

Post by Helico_expert » Sun Feb 17, 2019 11:32 am

1. H. pylori is the reason of inflammation. Inflammation can sometimes eradicate H. pylori, but that only happened to a small group of people. Most people's inflammation cannot get rid of H. pylori.
2. when H. pylori is eradicated, the inflammation will gradually recover. The recovery time is subjective, depending on the severity. Some people recover immediately and for some, can take months or years.
3. Changing lifestyle will not change inflammation severity and will not eradicate H. pylori.
4. acid reflux usually means higher acid secretion. But I think it is more to do with the esophagus sphincter being damaged. The recovery of such can take a long time.
5. dental filling will not affect the breath test.
6. I think the UBT value is not very high, but not low either. So I think the chance of true positive is high. I think with or without endoscopy at the moment is fine. However, if your specialist is able to take a biopsy and do antibiotic sensitivity testing, then endoscopy is worth it.
7. Chronic sinusitis is not associated with H. pylori.
8. Both UBT and stool test are suppose to be very accurate. However, many technical factors could lead to the failure of stool/UBT. for example, some people are very close to domestic animals and are infected by non-human H. pylori, then stool test will fail. This is just one reason of many. I think as long as either of the test is positive, it is justified for another treatment.
9. You can ask your doctor about high dose dual drug therapy, if antibiotic sensitivity is not available.
https://www.ncbi.nlm.nih.gov/pubmed/30768161
H. pylori cannot become resistant to amoxicillin. So you can keep on repeating using amoxicillin.
10. The inflammation in your stomach is probably the reason that your stomach is a bit more sensitive. I would put eradication of H. pylori as first priority.

glglak
Posts: 8
Joined: Sat Feb 16, 2019 12:22 pm

Re: 2 yrs and half & counting - breath test +ve stool - ve - 3 courses failed

Post by glglak » Thu Mar 07, 2019 7:01 pm

Thanks for your detailed reply, much appreciated, I visited my specialist and he thinks culture thru endoscopy is the way to go, I got to wait for my endoscopy which is two month or more later.

I got other questions till then:
1- what is the role of smoking with stomach inflammation and atrophic gastritis, does it make it worse/lead to it or not? I googled and found contrdicition in results (one study claimed it even reduce inflammation if I can understand correctly)
https://www.ncbi.nlm.nih.gov/m/pubmed/18609143/
2- my specialist believe there is a good chance there is a false positive results from breath test, can smoking affect breath test due to the excess amount of nitrogen and carbon dioxide in blood already(I'm smoker from 10yrs)
3- I started taking NAC (n actyl acytine) due to its reported effect in destroying biofilms of h pylori(I know you don't advise on supplements as I'm good follower to the forum) but my question is I started to feel burning sensation and discomfort in the upper middle of my stomach, is there any info or reports about why is that??
4- I started to oil oregano which made me feel better generally as I don't have clear symptoms but I think my diet is good.
5- can coffee in early morning without breakfast increase inflammation?
6- I read one time you said you guys tried so many natural treatments in labs and none seems to work, have you seen any improvement of using in natural treatment, do you have any reported case of people get treated naturally? Can any natural food/supplement support healing of stomach?
I'm not planning to reject any antibiotics treatments, I'm just trying to understand more as my wife got this h pylori and got treated from round 1 with repeated negative breath test every three month and I'm still positive after three treatments, only difference I smoke and she got better diet and play sports.

Thanks in advance, I know I got many questions but I got this thing on and off for years and doctors I go to stick to very short time and shorter answers as well. And my search on Google gets me into mazes (I'm not a doctor obviously)

Helico_expert
Site Admin
Posts: 3360
Joined: Wed Mar 02, 2011 7:20 am

Re: 2 yrs and half & counting - breath test +ve stool - ve - 3 courses failed

Post by Helico_expert » Fri Mar 08, 2019 10:25 am

1. studies have shown that
Smoking alone - stomach cancer risk low
H. pylori alone - stomach cancer risk low
smoking + H. pylori - stomach cancer risk elevated.

I think this is also a good review of smoking and gastric cancer.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4166441/

2. If you can get a concentration of anti-H. pylori antibodies over time (through multiple blood test), then it can give a prediction of whether you still carry H. pylori.

3. Biofilm is something I call - out of fashion. In early days when biofilm was introduced, everyone rush in to try proof of bioflim leading to antibiotic resistance. However, in our clinic, we never care of H. pylori's biofilm and still manage to cure almost everyone.

4. if oil oregano made you feel better, it must be the right thing to do. So keep it up.

5. Coffee in the morning will not make it worse.

6. there is still no natural product that is consistently working. we are still trying to find one.

glglak
Posts: 8
Joined: Sat Feb 16, 2019 12:22 pm

Re: 2 yrs and half & counting - breath test +ve stool - ve - 3 courses failed

Post by glglak » Wed Mar 13, 2019 3:46 pm

Thanks for the reply, It seems I can't find easily in Sydney the concentration level of h pylori blood test, usually its binary (detected, not detected form) but will keep asking..maybe you got suggestions?

Also, recently my wife got the h pylori symptoms again (fatigue, low energy, sensitivity towards food) , so she is being checked for h pylori thru breath test (it takes now 12 days to get results) along with set of blood tests which showed she got lower iron levels and neutrophils (white blood cells) but not very low, its like 1.8 and the least in normal range is 2.0 also she showed low on iron levels, one particular test is epstein barr virus a which showed it was positive in past, and then my overthinking lead me to search for association between both H Pylori & epstein barr virus in terms of increasing inflammation which showed positive associations, are there any associations on that? also should I get tested for this virus as well? I am confident I might have it since I am her husband, also my blood tests which I did recently looks good.

glglak
Posts: 8
Joined: Sat Feb 16, 2019 12:22 pm

Re: 2 yrs and half & counting - breath test +ve stool - ve - 3 courses failed

Post by glglak » Wed May 01, 2019 3:55 pm

Hi,

I wanted to post an update, I got the endoscopy done, and email about histology report was sent to the GP, so the report says:
1- Mild Gastropathy
2- Active H Pylori infection was present but still pending the cultures

but it doesn't indicate any more details about the histology findings, the specialist should call me to set up the next plan (We will have to wait for the cultures first which I don't know how much it takes) and he asked me to review the histology, cultures later.

Does that mean I don't have serious inflammation (metaplasia/atrophy etc) ?? also should I ask the doctor about inflammation degrees? or does that mean I don't have inflammation etc? I am not sure why he didn't send the histology report which came from the lab to my GP..

also since I've failed 3 treatments before, What is your advice to ask the doctor about in my next round of treatment?

Helico_expert
Site Admin
Posts: 3360
Joined: Wed Mar 02, 2011 7:20 am

Re: 2 yrs and half & counting - breath test +ve stool - ve - 3 courses failed

Post by Helico_expert » Thu May 02, 2019 1:00 am

If the report did not say anything bad, that means good. So dont worry about it.

Let's wait for the culture result before deciding on the antibiotics choice.

glglak
Posts: 8
Joined: Sat Feb 16, 2019 12:22 pm

Re: 2 yrs and half & counting - breath test +ve stool - ve - 3 courses failed

Post by glglak » Tue Aug 27, 2019 2:38 pm

Hello there,

I've had my report came back, it shows resistent to Clarithromycin, metroNIDAZOLE, Levoflaxcin which I've tried before, so the doctor suggested a prescription for 14 days of :
1- Amoxylcine (twice 1g day)
2- Tetrcyline (500mg twice a day)
3- Bismuth (4 times a day)
5- Nexium 40 mg (twice a day)
the report came from 3 months but due to I am really scared from side effects and adherence for the treatment, I decided to wait and play some sports first, my questions are :
1- Do you have any specific advises to be able to take the full course? will I'd be able to go to work normally?
2- Should I workout?
3- Any special diet recommendations?
4- Do you think its a good treatment?

Thanks in advance,
I will keep posting my updates

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