H Pylori Symptoms & My Journey

[ecpunk]

I am recording this information here so that it may be useful to someone else, and I'll reply back with an update once I have one.

I was diagnosed with h pylori in 2017 after learning my wife had it, and her immediate and extended family as well. We've been married for 18 years, so who knows how long I have actually had the bacteria.

I'm in my late 30's, and male.

Here is a timeline of events:

- I had some stomach pain, bright red blood in stool, diarrhea
- I started to occasionally feel dizzy/brain fog/memory problems, and this only happened during the fall. It would last for 3-4 hours, and usually I would have to take a nap. Additionally going to big box stores and looking around would cause the fog issue to start - I'm listing this as a symptom, but am unsure if it is related, although I believe it is.
- I have had occasional cognitive and attention issues over the past 10-12 years, and that has gotten worse.
- I had a scope to my stomach and was diagnosed with moderate gastritis and h pylori positive. I had 3 previos colonoscopies
- In 2017 I had one round of antibiotics, and it was just 1 pill type a day - I can't recall the type of antibiotic. It was unsuccessful.
- Shortly after I started 3 antibiotics, and it made me feel terrible... while traveling for work. I stopped the medication, and planned on starting back in a couple of weeks. Fast forward 3 years and I forgot to take the medication.
- The episodes of feeling dizzy and having memory issues progressed over the past 7-8 years to be more frequent, and occurred more of the year and not just in the fall.
- As of early January 2020, I woke up and felt out of it. I couldn't concentrate, or remember anything short term. At the time I was doing a house project, and I couldn't' remember what the tape measure read for more than 3 steps away from measuring.

Other weird and potentially related symptoms are morphea on my thigh (localized scleroderma), occasional burning on my back when sweating (I believe this may be histamine related), hives on my stomach, blurred vision, constant headache above my left eye, migraines, stiff neck to the point it is difficult to check my blind spot when changing lanes, acid reflux, insomnia, tunnel vision, occasional balance issues, occasional low BP (every 1 out of 3 doc visits maybe)

Because of the type of job I have, I have been on disability since early this year.I have been to my GP, ENT, ophthalmologist, Neurologist, neuro psychologist, regular psychologist, the Mayo Clinic in Rochester (14 hours away).

I've been diagnosed with vestibular migraines, for which the treatment was unsuccessful, somatic stress issues, depression, ADD, cluster headaches, and I've lost 47 points from my IQ. Everyone has their own diagnosis. Not having a clear diagnosis has made disability approval a pain.


I am going back to the gastro doc in 10 days to get a new round of antibiotics, and will definitely stick with it this time. I had to find the link between h pylori and potentially many of the other symptoms I have. I really just need to fix the memory/fog issue more than anything, and if something else gets better, that would be great. I'm just disappointed that the medical community does not pursue this as an option. I found a number of scholarly articles on NIH, the New England Journal of Medicine, and other respected sources. It was not difficult.

Last thought - I'm curious about the link between h pylori and mast cells, histamine, and the potential tie to numerous other brain related issues.

I'll set a reminder on my phone to post back in a couple of weeks. I know I won't remember . Wish me luck.

[Helico_expert]

good luck to your treatment!

by the way, do remind your doctor not to give the same antibiotics as before.

However, you can repetitively use amoxicillin, bismuth and any PPI (omeprazole, rabeprazole, etc).

one last tip. try ask for maximum dose of PPI. That can increase success rate. It is even possible to counter antibiotic resistance.

[ecpunk]

Excellent information. I'm glad I posted before visiting the doctor, and I will definitely ask a few more questions during my appointment. Thank you!

[Helico_expert]

do update us your progress. Surely your story will be helpful to someone.

[ecpunk]

I had an interesting week. I visited my gastro doc, who has only ever told me that gastritis is caused by stress, and that I need to take care of that - I'm laying in bed looking at the lake as I write this, and my life is very good. Take it from me, gastritis is not caused from stress in my case, AND it hasn't been accepted in the medical community that stress or spicy food causes gastritis since 1994! What a dope. I shook my head throughout my appointment this Friday/yesterday. I just wanted to get out of there. I was offered yet another endoscopy, which would be my second, and I've had 2 colonoscopies, all clean except gastritis and h pylori on the endoscopy. Again, I'm in fairly good shape, exercise, am thin, and in my 30's. I was also offered to look at my gall bladder. On to appointment number 2.

I was recommended to check out another gastro doc, and managed to schedule both gastro appointments yesterday. I visited gastro doc number 2, and was able to be thorough with him, and my wife was with me as well to make sure we didn't miss anything. At this point I have a 25 page document with what has happened since January, as well as test results. I had an additional copy of my last endoscopy in 2017 which I also gave to the doc.

2 things stuck out to me: whether he was serious or not, this is the first doc that has said anything remotely close to this to me - the doc told me, after seeing the packets I gave him, that he has a lot of homework to do this weekend. He wants to review everything. He also asked if I know of Barry Marshall, which I do, as he is the co-discoverer of h pylori. My doctor worked in Virginia when Barry was briefly in the US for a couple of years. My doc said he still has a relationship with Barry and will call him to discuss if needed. I've not gotten this level of support from any doctor, ever. I'm hoping it all works out. I'm being retested for h pylori on Monday. I've had the bacteria for at least 5 years, as that is when I was first tested, and I potentially contracted it from my wife 18 years ago or somewhere in-between. My wife is from eastern europe, and her family have h pylori issues as well. The new doc has also requested an endoscopy to ensure nothing has changed for me. While I was skeptical that the previous doc wanted to perform another endoscopy, this doc doesn't' seem to want to rely on someone else's information, which I understand.

Moving on - please fact check this as it is new information to me, but this is how I believe things to be in the body. Let me know if I have misunderstood something or neglected anything. I have been reading studies and medical journal articles for some time, which is how I stumbled across the potential tie of h pylori to my cognitive issues. I found a number of ties to mast cell activation, or mast cell stability, with h pylori. Please research this on your own to learn more, but very basically it is believed that h pylori can destabilize, or make more prone do degradation, mast cells in the stomach. Mast cells release histamine when breaking down. Histamine is in every cell of our bodies, and it modulates a number of functions such as mood, sleep, cognition, and numerous others. H1 and H2 histamines exist in our gut, with H3 histamines living in our brain and general central nervous system. It was discovered, I think in 2008, that histamine from the gut can pass through the blood brain barrier, which means that histamine from your gut can influence your brain. This was previously thought to not be possible. I'm just regurgitating what I've read in the NEJM and NIH, so please do your own research. I do not believe, or it has been my experience, that mast cells, the effects of histamines, and their relationship with h pylori is not even remotely a widely accepted theory, but there is quite a bit of research to support it ie https://pubmed.ncbi.nlm.nih.gov/15275970 as well as the cited information in the bottom of the nih article.

Because of this, on Monday, 6 days ago, I started taking an H2 antagonist, fomatidine/pepcid. I already take an H1 antagonist for allergies, desloratidine/clarinex. These will only help prevent histamine receptors from accepting the histamine. I stumbled across the use of Holy Basil, yes the plant in India, and its potential use for many things, but one of which is mast cell stabilization. I bought some on Amazon in pill form, which is sourced from India. Within 2 days I felt 80% better, and I'm probably 90+ now. My cognitive ability is through the roof, as I never would have been able to write a narrative like this first pass, and definitely not from memory. I told my new gastro doc about it, and he wants to look into it. My pharmacist is also checking into it. I've also had 2 unpleasant (smell) bowel movements later this week. They smelled like death - sorry for being graphic, but I've had this smell when getting over a stomach bug in the past. Nothing was painful, but just not pleasant, and gas has followed yesterday that was the same. Everyone in the house hates me, so hopefully it clears up

One novel later, but I hope I'm on the mend, and I'll definitely still be taking antibiotics in the next week if needed, but I'm just glad to feel better at this point. I hope there is a marked difference in my stomach lining, although I'm not sure how long it takes to recover from gastritis.

Thanks again for the support. I'll be back in a couple of weeks, hopefully with less information

[Helico_expert]

very interesting story. Do keep us updated with your follow up endoscopy examination.

[ecpunk]

And I'm back again. I'm nearly 100% better from a cognitive perspective & other odd things have disappeared as well. My sweat no longer burns, I have no energy issues, I do not get dizzy/disoriented in big box stores, and as a side effect, I'm generally happier . I'm back to work full time with no issues.

When I visited the 2nd gastro doc, we did a stool test. It came back negative for H Pylori. The doc still wanted to do an upper scope to check the "moderate" gastritis I had been diagnosed with in 2017. I have almost no sign of gastritis now. The doctor also did a couple of biopsies and guess what, I was positive for H Pylori. Stool test was negative, test straight from my stomach was positive. I'm not finding any information on what would cause a stool test to give a false negative.

I started omeprazole, clarithromycin, and amoxicillin. I felt a little iffy in the stomach area for 36 hours, but good since. I'm 5 days in.

I also visited a mast cell specialist in my area. For some reason I never thought that would fall into the allergy world, but it makes total sense. The allergist performed another allergy test on me (my last was 4 years ago), and I'm allergic to every grass, tree, mold, etc, that they tested, which is odd. 4 years ago I was much better off.

7 days prior to the allergy appointment I had to stop taking desloratadine (H1) and famotidine (H2). After about 2 days I started having cognitive issues again. On day 5 my energy was non-existent. Within 2-3 days after the allergy test, I started feeling better again. The allergy doc did a 24 hr urine study to test tryptase levels to get a baseline, took blood for testing for immunoglobulin - the samples are going to the Mayo Clinic lab. I'll have results in about 2 more weeks.

The allergy doctor believes I probably do have a mast cell issue, and told me we can even narrow it down further for treatment. Also, he told me to stop taking montelukast as it is known to cause depression and anxiety type symptoms in some people. I've been on it for 15 years, and the doctor stated that long term montelukast usage is no longer advised. Instead I am now taking double (10mg) desloratadine.

I'm feeling great now. I'll be back in a few weeks to let you know what I find. Last thing - I read that h pylori interacts directly with mast cells to cause the problems that it does. I'm still researching this.

[Helico_expert]

interesting information. Stool test can fail when the bacteria load is very low.

Biopsy is probably more accurate because it's examined by professional pathologist.

If Mast cell is involved, then anti-histamine may work?