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My H. Pylori Story

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Daisy
Posts: 8
Joined: Mon Jun 18, 2018 6:16 am

My H. Pylori Story

Post by Daisy » Mon Jun 18, 2018 7:29 am

Hello everyone! My journey with h. pylori started at least 2 years ago. I live in the US, so how I got it or how long I’ve had it, I have no idea. May of 2016 I had a weird feeling in my stomach that felt like I had to eat NOW. I was out with family and we stopped at a restaurant. While we waited for our food my weird stomach feeling progressed and I went into panic mode because I had no idea what was wrong with me. I ended up fine after eating something. Fast forward to the middle of August 2016 and the weird pain returned and this time it felt like gnawing hunger but it was accompanied by terrible anxiety symptoms too because, again, I had no idea what was wrong. The pain didn’t stop and I didn’t feel like eating this time which made everything 10x worse. The gnawing hunger escalated to major stomach pain and weight loss. My anxieties were through the roof. I went to urgent care and the doctor on staff blew me off and told me to see my cardiologist (I have a genetic heart condition). I made an appointment with a GP and while I waited for that appointment, my husband was missing work because I couldn’t take care of myself or our family. When I finally went to see my GP she prescribed anti-anxiety medication. I told her my stomach was bothering me terribly, I wasn’t able to eat, and that was causing my anxiety. Well, she said take this and see how it goes. Great. I could tell the doctors thought I was nuts and that all my problems were in my head. I took the medication and it made my anxiety go through the roof! I stopped it immediately and called the GP the next day. She referred me to a GI.

Went to the GI, described everything that had happened, how I was feeling, that I was losing weight, couldn’t eat, and I still had terrible stomach pain. He ordered an abdominal ultrasound. It came back normal. Went back to him (I had been desperate and was searching online for answers, which is where I read about h. pylori) and I asked specifically if I had an ulcer or maybe h. pylori and if they could test for it. He said my symptoms didn’t match h. pylori so he prescribed omeprazole and if THAT didn’t help, I’d need to go in for an endoscopy. The omeprazole really helped a lot (it took several days) and when I went back for a follow-up he was all like great, keep taking it and call if your symptoms return. This was in September 2016. I finished my prescription and I was fine for a long time. Fast worward again to July 2017 and my symptoms returned: gnawing stomach pain, sometimes my stomach would feel ‘hot’, sometimes dizziness too. I got my prescription for omeprazole refilled and was fine again. Went off of it again but this time symptoms returned much sooner. Now we are in early 2018 and I’m realizing this isn't getting better and I didn’t want to take PPIs for the rest of my life. The pain felt like I was hungry all. the. time. and I was never satisfied - no matter how much I would eat. I also wouldn’t feel normal hunger pangs; I would just eat during the times of the day that I normally had meals and I would need to stop myself from eating since I didn’t feel myself getting full.

Everything came to a head when I was talking with a friend from my church who was a GI nurse. I told her all my symptoms and right away she said “You know, it sounds like you have h. pylori. You should really get tested.” A week later I had made an appointment with my GP again and specifically requested the blood test for h. pylori. My test came back positive and when I was at my appointment to discuss treatment, she asked “So what made you think it was h. pylori?” Needless to say I was a little bit frustrated by that question.... Anyway, I was prescribed Pylera which was outrageously expensive, so I took the triple therapy separately: bismuth (pesto bismol), pantoprazole, tetracycline, and metronidazole for 14 days. I never missed a dose. During the antibiotic treatment I did really well. My GP said to follow up if my symptoms returned. I finished my course on May 20 and I was feeling great! I called her office to schedule a breath or stool test and she said she doesn’t do them, so she referred me back to the GI doc I had seen. Talked to his nurse and she said they don’t do those tests and they’re not accurate anyway. I had been feeling fine but I wanted to find out if my hp had been eradicated. Well, here we are June 17 and my gnawing hunger pain has come back. It hasn’t been as bad, but it’s there. Some days I don’t have it, some days are mild and days like today it feels like I’m almost back at square 1. I’m frustrated that the GI doesn’t do a breath or stool test! What I’m thinking he will want to do is make an appointment, talk about my symptoms, then schedule an endoscopy. I am so sick of the doctors here! I feel like I have gotten the runaround for 2 years, and to get an accurate diagnosis I HAD TO ASK them to check for hp. I have already spent so much money trying to get this figured out and to pay to also get an endoscopy is just about pushing me over the edge. I don’t even know if he’d do a biopsy to check for hp...

Anyway, that’s my very long story so far. I have been so grateful for all the posts I’ve read on this forum because I see I’m not alone with this problem and I’m not crazy. Here’s hoping we all beat this thing and never get it again! God bless 🙏.

Helico_expert
Site Admin
Posts: 2672
Joined: Wed Mar 02, 2011 7:20 am

Re: My H. Pylori Story

Post by Helico_expert » Mon Jun 18, 2018 10:14 am

it is weird that HP is not checked in a developed country like US. Perhaps HP is so rare now in the US, the new doctors are all inexperienced how to treat it.

I strongly agree that you need a follow up breath test to find out if you have H. pylori.

I also agree that Pylera is expensive. Perhaps you can ask your pharmacist to give you individual component of pylera. That will bring down the cost dramatically.

Daisy
Posts: 8
Joined: Mon Jun 18, 2018 6:16 am

Re: My H. Pylori Story

Post by Daisy » Mon Jul 09, 2018 10:31 am

Thank you for your reply Helico_expert. Since my Dr.’s office apparently doesn’t do a breath test and I was requesting one, he referred me to a different clinic but it’s more than 2 hours away. At this point I don’t know if the test is worth traveling that far for or if it’s even going to be covered by my insurance. I still have days where I feel fine and others where I have mild to medium symptoms. I do want to know if my h. pylori has been eradicated once and for all, though.

Helico_expert
Site Admin
Posts: 2672
Joined: Wed Mar 02, 2011 7:20 am

Re: My H. Pylori Story

Post by Helico_expert » Mon Jul 09, 2018 11:51 am

I think it is important to find out if you still carry H. pylori. what about stool test?

Daisy
Posts: 8
Joined: Mon Jun 18, 2018 6:16 am

Re: My H. Pylori Story

Post by Daisy » Mon Jul 09, 2018 10:27 pm

Agreed! Strangely enough, it seems my provider will only do an endoscopy to confirm the presence of h. pylori. I personally feel like that is an unnecessary and excessive step due to my symptoms being rather mild now and overall cost vs the stool and breath test options. But my provider doesn’t do the latter 2 tests. 🤷‍♀️ I did my own research and now I can order my own test through an online company and take the test at an authorized lab!! The lab is not close to where I live, but I’m willing to go this route as it’s cutting out the ‘middle man’ and I just pay for the test itself. It looks to be a reputable company in the US too. I plan on getting my breath test in a few days, so I will post my results when I get them!

Helico_expert
Site Admin
Posts: 2672
Joined: Wed Mar 02, 2011 7:20 am

Re: My H. Pylori Story

Post by Helico_expert » Tue Jul 10, 2018 8:57 am

all the best to your testing.

Pranjali sinfh
Posts: 15
Joined: Wed Jul 11, 2018 7:47 pm

Re: My H. Pylori Story

Post by Pranjali sinfh » Wed Jul 11, 2018 8:21 pm

Hi,
I am going through same hunger pain you are saying. I had my h pylori treatment few days back still m feeling sever hunger pain all time. Even after eating taking meal I started feeling pain in my stomach. After 1 or 2 hour again started feeling pain. I am just fed up with my life. Its sucking me.i am living in India but m surprised that a developing country like US has no treatment of that h pylori.

Daisy
Posts: 8
Joined: Mon Jun 18, 2018 6:16 am

Re: My H. Pylori Story

Post by Daisy » Thu Jul 12, 2018 10:59 am

I’m sorry to hear you are struggling too, Pranjali. I did get treatment for my h. pylori and I completed my antibiotics course, but similar to what I read from your story, my doctor doesn’t do a breath or stool test either so I don’t know if I got rid of this bacteria or not. I scheduled a breath test myself which I am getting in a few days, so I will know if my h. pylori is gone and can hopefully move on from this.

Pranjali sinfh
Posts: 15
Joined: Wed Jul 11, 2018 7:47 pm

Re: My H. Pylori Story

Post by Pranjali sinfh » Thu Jul 12, 2018 12:55 pm

Daisy wrote:
Thu Jul 12, 2018 10:59 am
I’m sorry to hear you are struggling too, Pranjali. I did get treatment for my h. pylori and I completed my antibiotics course, but similar to what I read from your story, my doctor doesn’t do a breath or stool test either so I don’t know if I got rid of this bacteria or not. I scheduled a breath test myself which I am getting in a few days, so I will know if my h. pylori is gone and can hopefully move on from this.
Our story is similar.big thing is no one is ready to understand that what is troubling me. I am waiting to see my doctor again. All the best and get well soon. Keep me update once u will feel allright

lisaron34
Posts: 8
Joined: Fri Jul 13, 2018 3:45 am

Re: My H. Pylori Story

Post by lisaron34 » Fri Jul 13, 2018 4:05 am

Hello
It has been almost a year since my journey began. After colonoscopy, Ultrasound, Ct Scan of organs,multiple prescriptions for acid and intestinal spasm and being told if I ate anything with sorbitol it could cause my symptoms(I hate anything sugarfree BTW) the doctor finally did an endoscopy. It took 9 months and my persistence. The bloating, tarry stools, gnawing pain under rib cage are all text book symptoms yet it wasn't even suspected that i had H Pylori. I am in the USA, born and raised in Chicago. I know several people who have been treated so why is it still ignored. My doctor acted like it was no big deal but treated with Omeprazale, amoxicillin and clarithromyicin. It tasted aweful but I was so happy to get some relief...I felt better for about a month. When the same symptoms returned, I knew it had not been eradicated. I waited because my doctor explained if you test too early it could be a false negative. So when i retested last week, through a stool test from doctor, it came back positive. Surprise surprise...NOT. I know my body and the symptoms. I am now going to start the PYLERA. I have good insurance so it will only cost $25.00 out of pocket. I am hopeful and so ready for some relief of the bloating and that gnawing discomfort.


I am sharing this because if I would not have researched and remained persistent, I am certain I would have lived with this discomfort, pain and change in my quality of life. It effects so much. The chronic inflammation is linked to other major health risks. I have gastritis but no full blown ulcers. H pylori untreated also has been linked to stomach cancer. Please stay on it. If a doctor is unwilling, get a second, third or fourth opinion. Please pray that this second round of treatment eradicates these little critters!! GOOD LUCK TO ALL OF YOU ON THIS NOT SO PLEASANT JOURNEY!!

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