ITP Personal Stories

Helicobacter Pylori Has Been Rough On Me

My name is Steve. I am 41 years old. Early in the 1990's I had a positive blood test for Helicobacter Pylori "HPylori". When news was released that HPylori caused stomach ulcers and can be cured with a simple two week antibiotic treatment, I scurried to my family doctor ecstatic that my gnawing stomach pain would be cured, with merely two weeks of antibiotics. Doctors can be stubborn and mine was. He gave me antacids, Pepcid. Over the next ten to twelve years of repeated office visits with requests for antibiotic treatment the family doctor convinced me that antacids were the appropriate way to go because they did help my stomach pain. I conceded.

In August of 1997 I was diagnosed with ITP. By this time my stomach had become swollen and the antacids "Previcid a acid inhibitor" no longer worked. I was told my spleen was swollen, too. My doctors recommended a splenectomy. They said it will bring up the platelet count but in reality it would only mask the underlying problem. I mentioned this to my Hematologist. He said that if the spleen was removed I would be susceptible to all of the childhood diseases again. "You know what Measles does to adults, " I told them. I will keep the spleen and they can figure out how to medicate me for now.

After about one and a half years of steroids my platelet count returned to normal. I felt my ITP would return. In 1995 I was so certain I should be treated that my wife also had a H. Pylori blood test The stubborn doctor neglected to let us know it was positive. In 1999 a endoscopy was preformed on me with a negative result. I had many more "numerous" visits to various doctors offices as well as research specialists relating to the ITP.

In December of 2000 my stomach pain was constant. I returned to the family doctor determined to be treated for H. Pylori. I said to the doctor, "With what we have known for years, ulcers are caused by H. Pylori, I don't have to live like this! So please give me the antibiotics. " The family doctor responded with his recommendation of having a gastroenterologist do a endoscopy to see just what is the matter. He said he would not treat me with antibiotics as they could make me worse. I didn't argue thinking the most certainly the gastroenterologist will find the H. Pylori and treat me for it.

Two week after my visit I had a relapse of ITP and returned to my hematologist who resumed the steroids. When the test results from the gastroenterologist came, the H. Pylori test was negative but they found stomach cancer "Malt Lymphoma", brought on by years of untreated H. Pyloi infection along with excessive swelling of the stomach. (It is directly associated and well documented today that Malt Lymphoma is caused by H. Pylori and the recommended treatment is eradication of the H. Pylori bacteria. The epithelial or stomach lining swells with advanced H. Pylori infection). But the ignorance and incompetence continued as the result of a negative H. Pylori test. Antacid was prescribed along with possible chemotherapy.

I mentioned my visit to the gastroenterologist to my hematologist. We had the pathology report sent to him. Immediately after seeing the report my hematologist knew H. Pylori caused Malt Lymphoma and he had recently read a report that H. Pylori could also cause ITP as well as swelling of the stomach. He then could say on three counts that one condition can not exist without the other. He ordered a $100 stool sample be taken at his lab for another test for HPylori " SURPRISE!! " The Hpylori test was positive and the worthless/expensive $800 endoscopy test, where they go directly into the nest, pluck a wad of them and still fail to see them? I am still perplexed over the situation".

We started the antibiotics as well as changing the Prednisone from 50mg per day to every other day. After one week into the antibiotics treatment for HPylori my platelet count came up from 70,000 to a unreal count of 144,000. It is well documented that eradication of H. Pylori leaves a 50/50 chance that Malt Lymphoma will regress on it's own.

I am now cured. I am bouncing off the walls with energy and not bruises, now that the constant drain on my immune system is gone. "NOW READ LINE ONE" --- the Hell I went through for some simple antibiotics!

After going through all of this I would find any doctor that will listen, first do a stool test, then treat me with antibiotics. There are several cocktails of antibiotic treatments that are FDA approved. There are also several test methods available blood, breath, physical sample by endoscopy risky as you must be drugged out, the stool test not mentioned often but saved me.

The moral of the story is: get a second test if you have reason to believe you are infected. Helicobacter Pylori can cause ITP, ulcers, stomach cancer and auto immune conditions.

HPylori is a communicable bacteria that drills its way through the stomach mucosa and attaches itself to the inside of the epithelia or stomach lining. Our body has a ingenious way of keeping the immune system from attacking the food we eat. It isolates the stomach’s content so the immune system can't see it. The body does this by coating the stomach with a jelly-like substance and preventing antibodies from entering through the stomach lining. The food is then digested and enters the small intestine. If nature didn't separate the food our immune systems would see it as a foreign intruder and attack it.

Pylori has a ingenious way of protecting itself. It digs through the mucosa hiding under the protected layer of the epithelia. Though the immune system can see the bacteria there, it can't get to it through the protected epithelia, so the anti-bodies continue to build up for attack. Eventually the immune system becomes overwhelmed with nothing to attack. It tries to alter or adapt to the new conditions and assaults the outer layer of the stomach lining, creating ulcers. Our immune system causes the ulcer not the bacteria specifically. With a constantly over worked immune system the body cannot fight other invaders such as mutating cancer cells.

See The Helicobacter Pylori Foundation for more information.

You should always contact a physician before doing anything. -- Steve (alw@harborside.com)