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Re: Still having weird symptoms

Posted: Wed Jun 26, 2019 1:09 am
by HelicopterPylaros
I was treated in May 2018 and till August 2018 I was on PPI. AS mentioned, the test was in September 2018. As I understand you correctly, the chance for Helicobacter Pylori is very low. I'm really wondering now what the cause for my symptoms is. To my understanding, the reflux disease is not really a match with my symptoms.

Most likely, the doctor will take a sample out my stomach during the gastroscopy. From your point, does it still make sense to do a breath test anyway?

Re: Still having weird symptoms

Posted: Wed Jun 26, 2019 9:35 pm
by Helico_expert
If getting another breath test can reassure you, then you should do it. That will help you from thinking about it.

Some symptoms are hard to heal as the damage is already done. You can only control it with PPI.

Re: Still having weird symptoms

Posted: Thu Jun 27, 2019 10:07 pm
by HelicopterPylaros
Helico_expert wrote:
Wed Jun 26, 2019 9:35 pm
If getting another breath test can reassure you, then you should do it. That will help you from thinking about it.
You're right. Before the gastroscopy I have to stay two weeks without PPI. This is actually a good oppurtunity for the breath test.
Helico_expert wrote:
Wed Jun 26, 2019 9:35 pm
Some symptoms are hard to heal as the damage is already done. You can only control it with PPI.
Well, I've read that already many times on the forum. According to the my old gastroenterologist, who made first gastroscopy, I had only a light gastritis. I really don't want to know, what a heavy gastritis feels like.

Re: Still having weird symptoms

Posted: Fri Jun 28, 2019 11:29 am
by Helico_expert
be positive. you'll be alright.
:)

Re: Still having weird symptoms

Posted: Tue Jul 16, 2019 10:11 pm
by HelicopterPylaros
I've had today the gastroscopy. Well, looks like that the damage in my stomach, that was done by the Helicobacter Pylori caused gastritis, is healing. Also, the Helicobacter Pylori fast test was negative. So far the good news.

Unfortunately, my stomach is not closing properly and this is causing reflux. I think Helico_expert mentioned somewhere in this forum, that this is not an uncommon damage for Helicobacter Pylori. This has caused Barett’s Esophagus. Luckily, it does not look like dysplasia, but to my understanding, Barett’s Esophagus has to be take seriously.

My gastroenterologist has taken several samples. The pathology will verify if it's (and only) Barett’s Esophagus. Also a proper Helicobacter Pylori test will be also done and also he will verify if a have a fungal infection in my esophagus.

So, the good news, that Helicobacter Pylori will be most likely negative.

For Barett’s Esophagus I have been prescribed with
  • One month Nexium 40 mg, once a day in the morning
  • One month Nexium 20 mg, once a day in the morning
  • One month Nexium 20 mg, every second day in the morning
I did some research today and to my understanding, I have to do only some minor adjustments to my diet. Namely, I will switch to low fat dairy products (milk, sour cream, cheese). Also, I have put something under my headrest, to have the upper part of my body higher during sleep.

Re: Still having weird symptoms

Posted: Tue Jul 16, 2019 11:07 pm
by Helico_expert
Barrett's esophagus is not easy to heal. Unfortunately PPI seems to be the only treatment for now.
The treatment plan you are prescribed seems good. Let's try out and update us the progress.

Re: Still having weird symptoms

Posted: Fri Dec 27, 2019 3:06 pm
by HelicopterPylaros
Hello,

I wasn't here for a very long time and I wanted to give an update. I've made my last post right after the endoscopy, before I even had the results back. First of all the good news: I don't have Barrett's esophagus. While I was still under the influence of the medication, I misunderstood the doctor. What he saw was, the the skin in my oesophagus started to change, caused by the reflux.

During the endoscopy there were two other things found: One was a fungus infection with Candida. My gastroentrologist requested then a full blood check and there was nothing else. It's not clear how I've got the fungus infection. My guess is, that it was caused by the antibiotics treatment against Helicobacter Pylori. I was then treated immediately for 3 weeks with medication. It turned out that this was the reason for my nausea and two days after I started the fungus medication, the nausea was gone.

The second issue: The doctor took a sample from my smaller intestine and it turned out that I'm lactose intolerant. I was never a big milk drinker, but I was able to eat things like yoghurt or ice cream without any problems. I'm truly wondering if this is related with my gastritis, but since I had gastritis it seems I've got more sensitive towards lactose. After I've stopped consuming lactose, my stool issues, the headache and the heave arms and legs were gone. I am now living for 6 months a lactose free live and I've got used to it. It's not always easy, especially if I'm having lunch or dinner in a restaurant, but I've got used to it and I can live very well with it.

In my previous post I've mentioned, that I have to take 40 mg Nexium for a month. While the first three weeks were fine, I started to have reflux and heartburn again after 3 weeks. I was forced to go for 2 months with 40 mg, before I started to reduce the dose. Also, starting with the therapy, I've increased slightly the hight of the top of my bed. My doctor adviced me to do so in order to avoid reflux at night. I still have this in place it seems to help me.

I've took the 20 mg dose for a month and reduced than to 20 mg every second day. I did the last dose for almost 1,5 months, because I was not always feeling well, but I was finally able to stop with Nexium. Now for 3 weeks, I am not taking any medication. While the first week wasn't easy for me (I had to take once Talcid), I am doing good now.

3 years ago, I was jogging in the morning, going to work and in the evening I was still full of energy. I'm not like that anymore, but compared to my state last summer, I am much better. I'm still getting quite tired in the evening, but I'm definitely much better than last summer. Also, I'm not that sensitive to certain food anymore. I'm still avoiding certain food (Mainly fried stuff. Got used to not eating it and it's not healthy anyway.), but I'm definitely not that sensitive to food anymore.

I'm looking forward to get healthy again and I'm doing better and better. I hope, that I will be 100% good again in 6-12 months.

Almost 2 years ago, the first symptoms started of the Helicobacter Pylori infection. While I'm glad that most of this sickness is over, I have to say, it has clearly changed me.

Re: Still having weird symptoms

Posted: Sun Dec 29, 2019 5:05 pm
by Helico_expert
That’s a wonderful update. Thank you for taking time sharing your story.

As for lactose intolerance, you can buy lactease pill from pharmacy. Then you can enjoy the dairy product again.

As for the breath test reading, although the dpm number is correlated to bacteria load, the amount of H pylori does not correlate to disease severity. However, the number does reflect to how accurate the test result will be. The higher the number, the less likely it is a false positive.

Re: Still having weird symptoms

Posted: Thu Jan 16, 2020 5:28 pm
by HelicopterPylaros
Helico_expert wrote:
Sun Dec 29, 2019 5:05 pm
As for lactose intolerance, you can buy lactease pill from pharmacy. Then you can enjoy the dairy product again.
The problem with lactase pills is, that the dosage isn't easy at all. To be on the safe side, lactose intolerants are taking a higher dosage then necessary and this causes side effects like gas. Luckily there are today enough lactose free dairy products.

I went this week for a check up to my gastroenterologist. As mentioned, I've had a fungus infection in my oesophagus last year and after an intensive check up it turned out that I don't have any disease or insufficiency that could cause this. According to him, this type of infections are happening very rare with antibiotics and he has therefore no explanation how I've got the fungus infection. To be sure, that the fungus infection is gone and also to monitor the healing process in my stomach, he has scheduled a endoscopy in a year.

Re: Still having weird symptoms

Posted: Fri Apr 24, 2020 4:05 pm
by HelicopterPylaros
Another update:

I did not take any Nexium pills for the last 5 months and I'm doing quite well. Getting fo these pills was not easy and in the beginning In the first two months after I've stopped with Nexium, I had sometimes hearburn. I've treated it with Talcid when needed and this helped me to avoid PPI.

I'm still careful with what I eat. Even though I can eat more, I still avoid food that could increase my acid level (like fatty food or a lot of red meat).

The stool issues I was experiencing, is getting slowly better. I had the problem, that the color was always lighter and it felt like I have constipation. I had for example a normal stool for 3 days, then not stool for 2-3 days and then it was so much, I hardly could flush it down. This has become slowly better and for the last 2 weeks I had more or less normal stool (color and amount). I don't know what the PPI are causing in my intestines, but I thought I've read somewhere that they damaging the environment in the intestines.

My gastroentrologist has scheduled my for a gastroscopy in january. This is just a check up, if everything is healing well and he wants to make sure, that the fungus infection (was treated last summer) is definitely gone.