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Extremely rare and ambiguous medical case.

Greetings everyone, i hope you are all doing well. Time and energy are a luxury that unfortunately i can’t afford anymore matter of fact i am using whats left of me to make this post, so as a consequence i am going to try and explain my case in a laconic and hopefully understandable way, and would also like to quickly apologize in advance for my writig mistakes, again extreme fatigue is to blame and also english is not my mother language.

Disclaimer ⚠️ :

This subject require a lot of patience and a great dose of critical mind, not to mention a vast knowledge on the medical field.

Introduction :

I am a 24 yo moroccan male who had a normal childhood physically wise, i was totally healthy until the year 2016 where i had a gastrointestinal infection due to something unknown that i have eaten, from there my life took a really gloomy and disastrous turn. It first manifested itself as a chronic diarrhea (At least 4 times a day) and chronic abdominal pain (In the duodenum area) that lasted for approximately a whole year and some months, afterwards a lot of non-GI related symptoms stared showing up (Myalgia / Mental and physical fatigue...), which have since gone into a snowball effect that had lead me to visit multiple doctors who requested a bunch of exams that came back negative, in the year of 2017 i had to learn to co-exist with my troubling symptoms and try to ignore them as much as i can (note that at this point the only GI symptoms left were an extremely atypical tingling in the duodenum and an unusual feeling of pressure the middle of my abdomen). In 2022 the tingling in my right upper abdomen area (Duodenum) and pressure in the middle my abdomen got soo sever that i couldn’t relax nor sleep because of it plus other symptoms like oversimulation of gas in my stomach. it was at this point where i said enough is enough and i asked my GI doctor for a colonoscopy / Fibroscopy in the hope of finding answers, the results indicated that i had a low amount of h pylori to which my doctor interpreted that it wasn’t enough to explain all of my systemic symptoms, however she advised me to treat it anyway despite the fact that it’s not going to have a noticable beneficial effect on my health, i agreed even tho i didn’t see the point of it. She ended up putting me on pylera 4 times a day for 10 days, and it did exactly the opposite of what i taught it was going to do, i was under the impression that it was going to bring back my chronic diarrhea and mess up my GI track but no it ended up taking away 90 % if not 99% of all my destabilizing symptoms, my mental and physical fatigue that i’ve had from 2016 had vanished, the tingling was less noticeable and the pressure in the middle of my abdomen had also lessened considerably in severity which enabled me to relax and sleep for the fist time from 2016 to now without taking sleeping pills, it only got better by the days as i kept taking the pylera pills. After completing the 10 days of treatment i went back to my doctor to tell her about the benefits pylera had done to me, she was confused to the positive reaction that my body had and proceeded explaining that h pylori doesn’t cause systemic symptoms unless if it was sever enough to cause malabsorbation which in turn cause for example low vitamin b12 that could have a systemic impact but it wasn’t my case, my b12 levels where always in range. She advised me to play the waiting game and to see if my symptoms would return after a period of time when stopping the treatment, and they did indeed come back but with a vicious and deadly vengeance, the tingling, the pressure and everything came back but much much stronger, i did let her know of this and she told me to do an urea breathing test to see if i was positive for h pylori but it was negative, this would indicate that the h pylori itself had nothing to do with my symptoms and that i had hypothetically attacked a chronic stealthy systemic infection that i contracted back in 2016, my doctor totally agreed with this theory yet clueless to which specific infection i have. So the questions is what hidden infection i must have ?. I have explored a lot of potential causes that i am going to share here with ya’ll + a description of my symptoms down below so i can help all of ya’ll understand better my case in the hope that one of you can shed some light on this vicious and ambiguous matter, i would be forever grateful for anyone who did or has contributed in finding the diagnosis of this unknown medical entity.
PS : I am going to put out everything down below in a chronological time-line.

Symptoms before taking pylera : ??/??/2016 - 07/07/2022

- Chronic diarrhea (Which stopped in approximately late 2017)
- Chronic pain in the duodenum area (Which turned in atypical tingling in late 2017)
- Exessive bloating and atypical tension with malaise sensation in the middle of the stomach, (6-10 severity )
- Mental / Physical fatigue (8/10 severity)
- Concentration problem (3/10 severity)
- Heart pain that is occasionall (2/10 severity)
- Atypical bone pain in both legs that get sever if the tension in the stomach area is sever, it’s almost like they are synchronized
- Insomnia caused by the tension and malaise in the stomach area, it’s like i have war in there

While on pylera : 07/07/2022 - 17/07/2022

- No more mental / Physical fatigue
- The excess bloating and malaise in the stomach area has lessened considerably (2/10 severity)
- Insomnia has gone away due to the fact that the tension and malaise in the stomach area has lessened
- I can finally relax because the war in my stomach area is gone

After stopping pylera : 10/08/2022

- Tingling sensation in the duodenum area has increased (8/10 severity)
- Bloating and malaise in the stomach area has increased immensely (10/10 severity)
- Mental / Physical fatigue has gone extremely worse (10/10 severity) - Muscle pain had gone worst + generalized in all of my body (10/10 severity)
- Acid reflux
- Allergic like symptoms (Sneezing + Itching) and also temporary dermatographia
- Brain pain and pressure + Cognitive impairment
- Hair loss
- seborrheic dermatitis

Exams done :

- Whipple disease PCR (Stool) : Negative
- Whipple disease PCR (Spit) : Negative
- Brucellosis test : Negative
- Lyme disease : Negative
- Urea breathe test (Post pylera) : Negative
- Quantiferon for tuberculosis : Negative
- CRP : Always normal
- CBC : Always normal
- Fibroscopy / Colonoscopy : CONCLUSION: 1-Duodenum: Non-specific edematous-congestive duodenitis. -Absence of villous atrophy. -Absence of giardiasis. II-Antrum + Fundus: Moderate, non-atrophic, active chronic antrofundal gastritis mild, without dysplasia or metaplasia, rare HP. III-DAI: Ileum with subnormal morphology. IV-Colon: Colonic mucosa, site of odorous-congestive changes specific. Absence of malignancy 200)3.1a) 2/1
- Abdominopelvic CT : Abdominopelvic CT does not reveal any abnormality. Dolichocolon shows significant stercoral residue without any suspicious-looking wall thickening.

Personal hypothesis :

- Chronic stealthy and systemic GI track infection that was affected by pylera and that got worst because it more treatment time or a different antibiotic was needed
- False negative in one of the exams above

finalization :

- In case you have questions or if you need to see the exams listed above do not hesitate to dm me in pivate.
- All potential diagnostic suppositions are welcomed.

Good luck.

  1. that is quite the frustrating and complexing situation you’ve been experiencing! A few things though that caught my attention that I’m wondering about is if your doctor has prescribed you to take a PPI ongoing for the reflux and gastritis, if they checked you for Cdiff and if you’ve been evaluated by a neurologist for some of the pain? I hope you find answers and resolution soon. It sounds like you’re a great advocate for yourself and that you have a good relationship with your doctor who is being thorough, both great assets in your favor!

    1. , that's quite a lot to go through for a long time. Does your doctor not want to continue the pylera? Sadly, fatigue is something that very often comes with chronic conditions. Please do keep in touch and let us know how you are doing. - Warmly, Donna (Team Member)

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