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5th treatment failure - what next?

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ankiwo72
Posts: 26
Joined: Fri May 17, 2019 2:45 am

5th treatment failure - what next?

Post by ankiwo72 » Fri May 17, 2019 3:02 am

What happens next, after all treatments have failed? Chronic gastritis in corpus. Inactive gastritis in antrum.

Went through amoxicillin desensitization 2x, had HP cultures tested for abx resistance, took all meds on time, to the letter. Kids tested negative, husband negative. Last salvage therapy was 14 days of Rifabutin, Amox, PPI (also did Pylera therapy, tailored quad therapy, triple therapy 2x). I'm dismayed and disheartened. Not sure what to do. Last 2 blood labs show low RBC. Have had many other labs all over the place (high levels of: CgA not due to PPI use, N-methylhistamine, gastrin, CU index, low+ ANAs). No evidence of carcinoids as of last year. Blood type AB+, American-raised, Korean-born. Are things looking grim for me? What should be done next?

I don't kiss husband on the mouth (sad!) and waiting for neg result before I do. Don't share any food or utensils w kids. Disinfect everything, regularly change toothbrushes. Not sure what else to do.

Sorry, I think I should have posted this in the Treatment forum. Admins please feel free to move if necessary. Thx!

Helico_expert
Site Admin
Posts: 3359
Joined: Wed Mar 02, 2011 7:20 am

Re: 5th treatment failure - what next?

Post by Helico_expert » Fri May 17, 2019 8:53 am

Hi, thank you for sharing your story here. I am sorry to hear what you have been through. At least your husband and kids are negative.

So I assume you had tried the following antibiotics
Amoxicillin
Rifabutin
Tetracycline
Metronidazole
Clarithromycin

it is quite rare that you are still not cured. The above antibiotics are quite strong. But since you are not allergic to Amoxicillin, I think you can continue trying Amoxicillin (H. pylori do not get resistance to Amoxicillin).

The one antibiotic that you most likely not tried is furazolidone. talk to your doctor about the possibility of trying the following combination.

Rabeprazole 20mg TID
Bismuth 240mg QID
Amoxicillin 1g TID
Furazolidone 100mg TID

10 days treatment.

ankiwo72
Posts: 26
Joined: Fri May 17, 2019 2:45 am

Re: 5th treatment failure - what next?

Post by ankiwo72 » Fri May 17, 2019 2:57 pm

Thank you. I am very allergic to amoxicillin and had to go through desensitization process twice to do the last two treatments. But if absolutely necessary I could go through the process once more—however it takes all day and is not an easy procedure to go through (have to take a lot of extra medications, steroids, etc. and many unpleasant side effects while going through the procedure). I think this is what may have contributed toward HP abx-resistance as I have had to use non-penicillin medications for many years due to the allergy. After so many antibiotics treatments, is a waiting period between treatments advisable (if pain is manageable) or should this be attempted as soon as possible? What is the success rate for the combination you suggest? Are there factors to help determine how high a risk I am for developing stomach cancer vs someone who will be able to coexist with this bacteria? What other possible medical/dietary/environmental issues could be responsible for so many treatment failures, if totally compliant with medication during treatment? Sorry so many questions, and thank you!

ankiwo72
Posts: 26
Joined: Fri May 17, 2019 2:45 am

Re: 5th treatment failure - what next?

Post by ankiwo72 » Fri May 17, 2019 3:20 pm

Hi again,

Per your recommendation, I just looked up Furazolidone. Bad news is it is no longer available in the United States :(
What else could be tried instead?
Also, yes to the list of medications you detailed - I have tried all of those already, including Doxycycline.

Helico_expert
Site Admin
Posts: 3359
Joined: Wed Mar 02, 2011 7:20 am

Re: 5th treatment failure - what next?

Post by Helico_expert » Fri May 17, 2019 4:32 pm

I was going to suggest PBTF, which is PPI + Bismuth + tetracycline + furazolidone

but if you dont have access to furazolidone.. i think the only way is to try bacterial culture via endoscopy again.

find out what antibiotics the strain is sensitive to now.

ankiwo72
Posts: 26
Joined: Fri May 17, 2019 2:45 am

Re: 5th treatment failure - what next?

Post by ankiwo72 » Sat May 18, 2019 12:26 am

Thank you. I am not sure if I would be approved for another endoscopy so soon. I had my last one about 6 months ago (2 treatments ago).

Results were:

Antibiotic: MIC (mcg/mL)
Amoxicillin: <=0.008
Ciprofloxacin: >2
Clarithromycin: >0.5 [Resistant]
Metronidazole: 32
Tetracycline: 1

Doc felt most of these abx (except for amox) required too high dosages to have any effect

HPI
Posts: 5
Joined: Sun Apr 01, 2018 1:32 am

Re: 5th treatment failure - what next?

Post by HPI » Sat Jun 01, 2019 12:51 am

ankiwo72 wrote:
Fri May 17, 2019 3:20 pm
Hi again,

Per your recommendation, I just looked up Furazolidone. Bad news is it is no longer available in the United States :(
What else could be tried instead?
Also, yes to the list of medications you detailed - I have tried all of those already, including Doxycycline.
Sorry to hijack.

Is doxycycline meant for HP infection too?

I had taken doxycycline and clarithromycin for other problems shortly before I was diagnosed with HP infection.

Helico_expert
Site Admin
Posts: 3359
Joined: Wed Mar 02, 2011 7:20 am

Re: 5th treatment failure - what next?

Post by Helico_expert » Tue Jun 04, 2019 1:37 am

doxycyline is the same as tetracycline.

they can be used for H. pylori treatment.

chetanvenki
Posts: 17
Joined: Tue May 21, 2019 9:05 pm

Re: 5th treatment failure - what next?

Post by chetanvenki » Wed Jun 12, 2019 10:22 am

ankiwo72 wrote:
Sat May 18, 2019 12:26 am
Thank you. I am not sure if I would be approved for another endoscopy so soon. I had my last one about 6 months ago (2 treatments ago).

Results were:

Antibiotic: MIC (mcg/mL)
Amoxicillin: <=0.008
Ciprofloxacin: >2
Clarithromycin: >0.5 [Resistant]
Metronidazole: 32
Tetracycline: 1

Doc felt most of these abx (except for amox) required too high dosages to have any effect
I read custom therapy has 100% cure rate. Taking abx at high dosages is dangerous?

Helico_expert
Site Admin
Posts: 3359
Joined: Wed Mar 02, 2011 7:20 am

Re: 5th treatment failure - what next?

Post by Helico_expert » Wed Jun 12, 2019 1:13 pm

nothing is 100%.
yes, high dose of antibiotics can be harmful. I guess it depends on what type of antibiotics. Amoxicillin for example, is very safe, H. pylori cannot be resistant to, can be given to children and pregnant women, can take up to 3g a day.

Bismuth too, 220mg 4 times a day. it's a bit high, but only 10-14 days treatment. It's not easily absorb by the body. It works by coating a layer on the stomach and intestine lining. Can prevent C. diff complication.

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