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Rare Case - H pylori Reinfection Must READ

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photon
Posts: 23
Joined: Sat Jun 11, 2016 6:11 am

Rare Case - H pylori Reinfection Must READ

Post by photon »

Here's my full story hopefully it is helpful for research purposes.
I've learned a lot about h pylori it's almost 10 years since Ive been dealing with it. I've also been reading several papers so if any one knows more about h pylori after helico_expert and Dr. Marshall, IT's ME ! :lol: Just joking!

I used to live in the US and I went on a raw vegan diet in 2012 or so (I believe this is the time I got infected with H pylori) after that I had mild gastritis symptoms (several months later) which over the course of 2 years got worse and worse. Had no idea what it was. Obviously I quite the raw vegan diet.

Two years later, 2014, I got an endoscopy and was diagnosed with severe gastritis and h pylori. Took triple therapy but failed to complete due to side effects, second line tratment: quadruple therapy, compleletely eradicated it and felt fine like life was good again.

A few months later I decided to move to Peru.

ONE WEEK AFTER I started living in Peru, the symptoms came back. Just one week! I did not shared utensils I did not even eat outside everything I ate was dishes that I cooked myself. Nothing raw, maybe bananas.

Did not know much about h pylor and this time I thought it was just gastritis or my stomach was not fully recovered from the last infection which was weird because my diet was super bland...

Did Breath test, negative. Did blood test, igM positive but other tests negative. So doctor diagnosed me with gastritis.

Two years later my condition got so bad I was puking blood from reflux sometimes it was that bad I had lost so much weight (42kg, 170cm tall guy) and I had a reaction (became allergic) to a lot of foods and was limited to eat just a few (the reason why i lost weight). This allergic reaction was just reflux nothing dangerous but basically everything my stomach did not like gave me reflux and then throat ulcers which made me puke blood sometimes.

Went to the doctor, did endoscopy, gastritis, h pylori detected. (So probably got infected in 2014 when i moved to Peru).

Did first round, breath test negative, stool test negative. I was happy and I thought I was on my to recovery.

Nope, never recovered although my breath and stool test were negative.

I just waited but that day never came back.

MID 2017: decided to go to another doctor a specialist in the field of h pylori in Peru, felt sorry for the way I looked my condition my body and was doubtful about treating me for h pylori with a negative stool test and negative breath test. The only positive test I had was my igM blood test (which was only negative sometimes, it was usually positive when I felt bad).

He empirically gave me some anibiotics similar to quadruple therapy telling me that if its not h pylori it may be something else the world is full bugs we still dont know about.

6 months after completing my treatment I was completely back to normal. I gained weight 68kg , i was finally able to move out of my room, study, meet people, go to parties, life was back to normal, it was mind-blowing, hard to believe I could eat pretty much everything even alcohol and spicy food and reflux was gone gone gone gone.

Anyways, 2017-2020 were the best years of my life. You wouldn't believe the stuff I was able to do during those years I still don't believe it myself. Going from a 42kg guy who barely had any sleep due to reflux to a 68kg guy partying, drinking, sleeping like a log and even playing football in a proifessional field! Those indeed were the best years of my life, I visited the doctor a year later or so and he did not recognize me and once he looked at me he said "It is nice when patients come back like this and they do so just to be thankful, it is nice for me to see you like this as a doctor". We both hugged and exchanged contact info.

2020 covid hit the country, so i moved back to Ica to stay with my family (im not married we're just a big family).

6 months later, symptoms came back, and they've never really gone away despite treating myself with abx for about 1 one year and a half (maybe 5 treatments or 4 in total). Now you may ask why not contact the doctor who got your life back and why treat yourself instead? That's not good! At least see another doctor in your area.

Well what you dont know is that the politics of this country is to not treat h pylori well either that or they're just clueless about it.

Every doctor I went just gave me anti reflux meds and the ones who treated me (actually just one besides the doctor I was talking about) told me "Why treat you? You'll get reinfected again, this thing is everywhere" for which I yelled at him and stormed out (I regret doing this but i was just fed up with h pylori, you gotta respect all doctors they mean well and this thing is so super complicated).

What about the doctor who cured you? Why not see him again?

Well he dissapeared, he had to resign due to his hospital's problems with the covid vaccine distribution. They basically gave it to politicians and doctors and not fully used them for clinical trials. So I can't find him and I probably never will.

Anyways, right now I have gastritis and food intolerances but not to the point of being sever and interefering with my life. I can still live life normally but it's painful , my stomach burns and i get reflux too, again not as bad as before i can still eat a lot of stuff and im not getting ulcers anymore but the gastritis and the symptoms are there.

I have done the the igM tests, for the past year or so and it's always positive. Always, after every treatment, during the treatment before treatment etc. I never tested positive for igG NEVER. The only true indicator for me that I have h pylori (stool tests sometimes fail for me) is the igM test which does not go down as its supposed to go down.

So what's to learn about your story? Looks like you're flexxing you know stuff and that you got better....

The main cause for reinfection for many of you might be:

WATER!

H pylori has been in the water all alone I think and it's the cause for my reinfection, for the past two years I've been living in Ica, the same place i got my first "reinfection" and thats why I can't seem to get better despite treatment after treatment.

We all boil water but we wash our dishes with hose water and we also brush our teeth with the same water. If you're getting reinfections and you're not getting better after treament, boil water and use it to wash dishes utensils and to brush your teeth. Im not sure if boilin water will kill h pylori but that's all you can do right?

Some places have clean water and others do not that's just the way it is. It's the only explanation I can find why I was able to get better when I moved to certain areas only.

90% of the peruvian population have the bacteria and even my family here complain of mild gastritis symptoms.

You could say they've infected me through saliva or sharing utensils, true, but I've learned to do none of that ever since 2014 and always used my own stuff and even cooked my own food. Never did I think of the stupid water...never...until a few months ago.

More research needs to be done about the water. There are some papers finding h pylori even in bottled water jesus!

Right now I just finished a treament with levofloxacin and amoxicilin. I think it may have been succesful but again because this thing I believe is in the water I coud've become reinfected again (maybe when taking a shower or washing my face) anyways we'll see.

Hopefully my h pylori igM test is negative and for once my igG is positive. IgM has been positive all this time (not a single negative igM test in the past two years).

Why do I expect to be negative this time?

I've been boiling tons of water till it looks like lava and pouring it in a container and i've been using that water only even for brushing my teeth.

I've also been eating broccoli sprouts and cooking the heck out of every food I eat. Hopefully that helps and my h pylori test igM is negative.

Unfortunately, this is very time consuming and sometimes I've used unboiled water to wash dishes and utensils (not very important when cooking because water will boil anyways).


Anyways Im not sad nor am I mad about this because I know h pylori is the culprit and that can be cured.

Hopefully this story is helpful to some of you. I'll keep you updated. :D

photon
Posts: 23
Joined: Sat Jun 11, 2016 6:11 am

Re: Rare Case - H pylori Reinfection Must READ

Post by photon »

Here are some of my tests throughout the years. I’ve had negative igM tests but only when I felt better which I can’t find the results to. I’ve also have a more recent igM test taken last month which was still positive ….

There’s a igM tests taken four months ago here

https://ibb.co/3k1w7Hx
https://ibb.co/Dk4ccSS
https://ibb.co/jLfqwzQ
https://ibb.co/4m8srbc
https://ibb.co/1dLzTVS

Also breath test is bullshit it never works in my case never tested positive even when infected what’s okay is stool test, I would test positive with really really bad infections of h pylori but not so great with mild infections like it’s been for the past two years.

So….if u want my advice don’t do stupid breath tests….blood tests are more accurate in my case but that’s not everyone’s cases….what’s more accurate for most people I think asi stool test so do that my friends. If that fails and u still have symptoms blood tests after several several months of your last treatment

I will attach ath newest igM test soon I just have to look through my cellphone.

IgM - recent infection remember that so either I’m getting reinfected all the time or my body never switches from igM to igG as long as I have an infection. One thing I’m sure of? This stupid thing does not die that easily as some claim…it survives quite well in water.

celeron16
Posts: 19
Joined: Sun Jan 02, 2022 4:24 pm

Re: Rare Case - H pylori Reinfection Must READ

Post by celeron16 »

Hi Photon

After reading your story, its looks obvious to me that you are allergic to something, could be something in your food or water. Do an allergy test or change your location

Best of luck !

photon
Posts: 23
Joined: Sat Jun 11, 2016 6:11 am

Re: Rare Case - H pylori Reinfection Must READ

Post by photon »

Just so my point is not mis understood and people can learn from this. These are the points of my story.

1. I have had h pylori all this time but the only reliable tests are fecal and blood test, more towards blood tests. Im not saying all my tests are negative and my ailments were due to something else.

Here's a positive fecal test back in 2016 when I was at my worst.

https://ibb.co/8XCnLpK

2. H pylori reinfection is very very common. In fact, I did not get infected with covid during two years but I did get h pylori (again because of the water). So people if you feel bad several months later (I'd say 4 months) then do a fecal antigen test and if you still feel bad after a negative test then do a blood test but you must have a baseline and monitor how the antibodies change over time (they should go down).

3. I did not make this clear but h pylori is basically like covid in some sense, you will get overall inflammation and the longer the inflammation is present the higher the chances you will develop food intolerances. It's also depends on how severe the infllamation.

In my case, the long standing severe inflammation caused me to lost digestive enzymes. I lost the enzyme to digest maltose which is present in nearly every single carbohydrate. Once my stomach detected maltose (it's in rice, potatoes, cookies, carbs,etc) it just rejected it it could not digest what else could it do if my body did not have the enzyme for it? It's similar to lactose intolerance you get diarrhea reflux stomach bloating, etc.

Once I at a lot of maltose like a cup of rice (I could eat in very very small amounts) my body would cause me to have reflux this repeated reflux damaged my throat creating ulcers which healed after a few days.

4. Finally, once h pylori is eradicated , the body will go back to a state of no inflammation and the enzymes all come back and you will have no symptoms when you digest food. In rare cases, you will lose some enzymes altogether and you will have a reaction to some foods here theres nothing you can do...just eliminate those foods out of your diet. Most culprits: lactose, gluten, soy and nuts. It will take a much much longer time to get back those enzymes once you eliminate h pylori. As for me, I got all my enzymes back after 6 months of no h pylori. Now several years later , got reinfected again and lost the enzymes to digest fat my body does not handle fat well now however i can eat all the carbs I want, it's a random process.

5. Vitamin D: I forgot to say this but I stopped taking vitamin D in 2020 cuz I ran out of it. I used to take 10 000 UI a day after I recovered from h pylori. It might have prevented reinfection during those awesome years. I think there are papers saying vitamin D will kill h pylori and tame the immune system to get rid of it. I'd strongly advice everyone to take vitamin D after h pylori eradication is confirmed (through stool test bc breath test is bullshit for some people it will be negative always because h pylori will cause low acid).

Don't forget to boil water guys and wash all dishes if you're living in a third world country or if you're getting reinfections. :lol:

Helico_expert
Site Admin
Posts: 4489
Joined: Wed Mar 02, 2011 7:20 am

Re: Rare Case - H pylori Reinfection Must READ

Post by Helico_expert »

Hi,

thanks for sharing your very interesting story. Here is a few points... hopefully they help you understand better.

1. H. pylori doesnt survive well outside human body. So spreading from water is probably not the common path.
2. I think you have IgA instead of IgM. IgM is usually an indication of initial exposure of a pathogen. IgM antibody doesnt match perfectly to the pathogen. Usually as the immune system recognise the pathogen better, it will gradually switch to IgG or IgA. IgG is the common antibody that spread around the body. IgA is only present in the mucous surface, such as eyes, nose, lung, stomach, mouth, etc...
3. The immune system has memory. That's how the vaccine works. You took a vaccine, and your antibody will go up for months or years. That's why you should not use antibody as an indication of your H. pylori infection status. The antibody can remain positive for 3-5 years.
4. Nevertheless, it's odd to have negative IgG while your IgA is still so high. Immune system is hard to understand sometimes. But, knowing that you have negative UBT and negative IgG, I would assume you are free of H. pylori now.
5. Your symptoms are probably triggered by some allergens or stress. In Australia, where H. pylori prevalence is very low, we do have many people with gastric symptoms and no H. pylori. We still dont know why.

You had an endoscopy done in 2014. Perhaps it's about time to have another one to follow up the condition.

Brownchikano
Posts: 25
Joined: Wed Mar 24, 2021 10:53 am

Re: Rare Case - H pylori Reinfection Must READ

Post by Brownchikano »

Super late reply, but the IGM antibody test via blood will ALWAYS be positive because your body already has antibodies to this bacteria.

Only breath and stool test can detect current infection. If antigen stool is negative then you do not have current pylori infection.

photon
Posts: 23
Joined: Sat Jun 11, 2016 6:11 am

Re: Rare Case - H pylori Reinfection Must READ

Post by photon »

My igG has never never never been positive. Im talking about igM tests whicih are only positive RIGHT after infection (in msot people) in my case the igM is always positive...no igG.

igM/A= definition= only positive after infection and month after infection --> ALWAYS positive for me throughout my 6 years since I got the first igM blood test

igM turns slowly into igG and igA as the infection becomes chronic.

igG= definition = positive years after infection. ---> Never positive for me despite having h pylori several times.

I found one more lab test with positive stool test from 2016. I will attach endoscopy results later confirming reinfection. I have to look for them.

https://drive.google.com/file/d/1EjFBhj ... sp=sharing

Notice that a year or two before i had the breath test below and it was negative :

https://drive.google.com/file/d/16akfg8 ... sp=sharing

Because I belived in breath tests I went two years untreated for h pylori and it got to the point where in 2016 i wasnt able to tolerate maltose which is present in every caarbohydrate and everytime i ate maltose i would get insane reflux to the point of having ulcers and puking blood.

I do not trust breath tests. Ive had breath tests throughout my life not a single one has been positive.

Stool test is better way better but it can still fail. The gold standard should be endoscopy for patients who are STILL complaining of symptoms long after eradication but in MY very own PERSONAL , I repeat, PERSONAL, case...blood tests work too. It is because of the way my inmune system reacts to h pylori. There are anecdotes of this happening with some patients with OTHER diseases.

Anyways...

Right after I eradicated the bacteria in 2016 ...I reinfected again and my symptoms worsen again until mid 2017... and the stool test was negative but POSITIVE igM.

I did not go to the doctor so frequently because the stool test was negative. But when I puked so much blood I decided to go find an h pylori specialist despite having negative stool test and negative breath test but positive igM/A....I had to do something.

It was then in 2017 that I met the #1 doctor in Peru for this disease and he gave me some abx and recommendations...despite having breath test and stool test negative (only positive igM test) he still treated me for it....fast forward 4 months later...I started to gain weight from 45kg to 55kg...2 months later completely recovered the enzymes to digest maltose and even lactose so i gain as much as 68kg.

From 2017-2020 I was h pylori free, drinking alcohol, zero reflux, partying, eating whatever I wanted, even my other 'autoinmune disease' cleared up....only in 2020 did I get reinfected again for reasons I explaiend in my story and right now reinfection is mild...got symptoms reflux and only positive igM/A tests here's the latest :

https://drive.google.com/file/d/1BPmLg7 ... sp=sharing

Why did I ger reinfected again in 2020? I moved to the very same city I got my first RE-infection: Ica which in my opinion has contaminated water becauwe my entire family and neighbors complain about gastritis symptoms. Even when I lived alone (bought a house because of it) I still got reinfections 2021-2022.

I treated for h pylori again and will take an igM/A test to prove that for me it works....its a sign of reinfection. Please take note of the number above because in a few months it will go down....which means it is not a constant number. I already had the igM/A test turn to very low numbers after eradication for me...but the tests are in Ica. I will get them too.

I do not agree igM/A should be positive for years after reinfection....igG I can belive that.

Also I belive stool tests can be negative and if you have breath test and stool test negatives but you have symptoms you probably still have h pylori and only an endoscopy will make sure there is no h pylori. Blood tests are useless for most people but in MY MY very own CASE, it is useful.

Like I said, i had negative breth and stool and was DYING from h pylori literally DYING in 2017 but positive igM/A got treated with abx and my world turned around and I thnk that doctor for being so open minded...I would've lived a very miserable life if he had chosen NOT to treat me.
Last edited by photon on Mon Sep 26, 2022 12:06 pm, edited 1 time in total.

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