PLEASE HELP!! Disabled for a year outta nowhere! H Pylori?

[DDR4321]

Basically nearly a year ago my life instantly stopped with severe, debilitating shortness of breath overnight.
12 trips the ER, endless specialists, docs, tests, procedures and day after day of living hell....2 months ago, my dad suggested to me I get checked out for h pylori, despite having an endoscopy that showed a negative result.
I've had two endoscopies this year. They both were negative for h pylori. However, I was on Nexium during both endoscopy's, which I learned will present a false negative.
My symptoms are shortness of breath, stomach pains/aches, back aches, racing heart, heart skips, dizziness/weakness bouts, acid reflux, regurgitation, lung aspiration from stomach acids...
The last endoscopy revealed stomach discoloration & gastritis. I had a abdomen xray with contrast this last week that showed some irritation on my duodenum.
The GI doc I'm seeing ordered a breath test per my request....in addition I got my GP to order a blood test.
SO, my breath test came back negative, my blood test also negative. However, I had my breath test done at this LabCorp in a Walmart and the women working had never given one before and was literally reading the instructions on how to give one in front of me. It only took 20 minutes and I was told afterwards through a nurse at National Jewish that it should have been a 2 hour process. My stomach is usually really tight feeling, even when it's not hurting...it's still not completely relaxed, ever. Because of this, I can't ever get a deep, complete breaths.
Anyway, the GI doc said breath trumps blood test and therefor concluded I didn't have h pylori. The problem is, his only advice was to wait it out. I've been waiting it out for an entire year!!
I haven't been able to work, drive or live! I've been in total seclusion since this hit me.
Anyway, what is everyone's take on this? Any feedback, advice, opinions would be greatly appreciated!! I still think h pylori could be a strong suspect in all of this despite my test results.

[Helico_expert]

Hi,

if your blood test result is negative, it'll be negative. Blood test is very sensitive. it test for the antibody of h. pylori for the past 3 years. Usually we would concern if the blood test gives a positive result.

I am sorry for what happened to you. I really hope that it is H. pylori that cause the problem. So we at least know what to treat. Since you already know breath test very well, how about you do it properly again to get a final conclusive result.

stop PPI for at least 3 weeks. that will allow your acid to come back and any possible H. pylori to come back as well. then do the breath test with not too much water. the urease pill will go through the stomach too quickly if there is too much water.

if it comes back negative, then you ask your doctor for the histology report from the endoscopy. if report says no bacteria, then you tell your doctor you are a very special case. genetic? diet?

if there is bacteria seen in histology report, then should do a sequencing analysis to find out what is that bacteria. maybe it's an unknown bacteria to be discovered.

[DDR4321]

Thanks for the timely reply. The only thing that seems to somewhat ease this constant torture is drinking lots of ice water. Is it possible for me to still have h pylori despite negative blood tests?? Has this happened to others? I know my father had a hard time with h pylori a few years ago, he was never tested. The doc just gave him an antibiotic and he was better. I had ceased PPI's for exactly 2 weeks when I had my blood and breath tests performed. I haven't been on PPI's since. They weren't helping. What's a urease pill? I never got one of those in my breath test. I blew in a bag and then i drank a shot of some liquid, 15 minutes later I was told to blow in a bag again and I was done.
I will do and ask for everything you suggested. Please help me, I honestly can't do this much longer.
warm regards & tanks in advance.

[Helico_scientist]

Hello,

I don't think that the blood test can be negative if you are H.pylori positive as it is very sensitive. However, you should have a new breath test and get treated for H.pylori if necessary.

Urease is a reagent that we use to check if the bacteria is H.pylori or not as it is a special enzyme present in this bacteria to produce ammonia. The urease pill is the pill you swallow when you do the breath test before you blow in the bag.

According on your first post, I'm not sure H.pylori has anything to do with your problems unfortunatly. But its better to get checked anyway. A breath test should only take 15min to do.

Good luck

[Helico_expert]

yea, I just want to expand on the explanation on "urease pill". It's actually a pill containing radioactive labelled urea. urease is the enzyme present in H. pylori that has the ability to breakdown urea into ammonia and carbon dioxide. the CO2 is radioactively labelled and when you breath into the second bag, we can measure the radioactive level.

if you have h. pylori, urea will be broken down and we will detect radioactive CO2.

if you dont have h. pylori, urea will not be broken down in the stomach and before the pill gets into the intestine, we will not detect the radioactive CO2.

maybe the pill is made into liquid form. I am not sure.

if blood test is negative, usually it will be true negative. blood test only gives false positives.

nevertheless, if your blood test is negative, urea breath test is negative, and histology result negative for any bacteria, I think it's interesting to investigate further what causes the stomach to look pale (according to your first post)

[DDR4321]

Wow ok, thanks for all of your feedback and complete explanations I really appreciate it. I'm quite depressed at this stage, because so many of my symptoms are that of h pylori, it really seemed like this had to be it. What could it be?? Do you have any tests or specialists recommendations? The GI doctors i've seen have been of little help. They are good at showing and telling me that my stomach is really messed up, but have literally ZERO suggestions on what it is, let alone what to do about it! I can't breath right because of it. I'm unable to walk more than a few block, let alone lead a normal life. Do I need a pathologist?
When this hit me, I was living in an apartment with damp, musty air and dirty carpeting. Some people have been insisting to me that I have mold toxicity. Since the medical community have failed me on any proper diagnoses, I've been thinking this is a possibility. What do you think? I hope it's not true, as all the research i've found on it suggests it's an ambiguous black rabbit hole really. But, it does seem like it could be it I dunno.
Thanks in advance for your time and feedback, means alot.

[Helico_expert]

i think you need a histology of your stomach and see if you can see any pathogen. if no bacteria or fungus, then there is no need for antibiotic or anti fungal.