UPDATEI was recently given a clean bill of health in regards to this nasty little bug. I am overjoyed, and so thankful that I found a Dr. willing to listen to my concerns and treat me. If you, or anyone you know is going through this horrific diagnosis and treatment process, it can be cured! Don't give up. Original Post :
That was the first thing I said when I learned about Helicobactor Pylori, or H. Pylori, as it is commonly referred to. According to the Mayo clinic it is a a "bacterium known by the same name that infects the stomach and the first part of the small intestine" ( http://www.mayoclinic.com/health/h-pylori/DS00958 )
I was having routine tests to prepare for an upcoming surgery when I got the call: "You have a bacteria, and we don't normally treat it unless you have symptoms, but you don't, so we aren't going to do anything unless you start presenting symptoms."
"How did I get this?" I demanded, but they didn't know. Some say it comes from contaminated food or water, but no one knows for sure. I was a bit taken aback. I got off the phone and went on a fact finding mission about this disgusting little bug.
I scoured the internet and found very valuable information. I found out that the blood test I had was not definitive; it meant that I either have an active infection or I have had this infection in the past and developed an antibody for this that is present in my blood stream. I asked my primary doctor for the more definitive testing, and she said she did not know about any further testing. I then made an appointment with a Gastroenterologist.
I did more research and read that "It is estimated that 40-50 percent of people in developed countries and more than 90 percent in developing countries have this bacteria." (http://www.cancer.gov/cancertopics/factsheet/risk/h-pylori-pancreatic) The kicker is that only 20% of people who have this bacteria will ever show symptoms or develop a peptic ulcer. More importantly, "In 1994, the International Agency for Research on Cancer (IARC) classified H. pylori as a carcinogen, or cancer-causing agent." (http://www.cancer.gov/cancertopics/factsheet/risk/h-pylori-cancer) I read that H. Pylori has been known to cause gastric cancer, and it is suspected to also cause Pancreatic cancer, and MALT lymphoma.
At my appointment with the Gastroenterologist I expressed my desire to have more definitive testing to see if I have an active infection. Tests were ordered that were unpleasant, at best. Then I waited. I finally got a call that my test was in fact positive. There was live bacteria swimming around my gut. I asked about treatment, but I was told they normally do not treat this bacteria if there are no symptoms.
"
WHAT?"
I could hardly believe my ears. I asked to speak to the doctor directly and waited for him to call me back. When he finally called I asked him to be treated, and he repeated the same spiel to me. I asked him if he was aware about the studies that this bacteria causes cancer. He told me that he was aware, but that was only a factor in people that have had the disease for 10 years or more. I asked him, if he didn't treat me how was I suppose to get rid of the bacteria so I didn't end up with it for 10 years, and then get stomach cancer. He then agreed to give me the antibiotics.
The antibiotics were awful. I had to take 1500 mg of clarithromycin and 1500 mg of Amoxicillin along with 60 mg of lansoprazole. Folks, that is a lot of antibiotics. The side effects were not fun either, my least favorite was the horrible taste. Nothing got rid of it and it made me very sick to my stomach.
Things were looking up as I finished my last couple days of the 14 day treatment, when I found some more disturbing news. "Up to 20 percent of patients with Helicobacter pylori infection are not cured after completing their first course of treatment" (http://www.utdol.com/patients/content/topic.do?topicKey=~gi0iITvAhVEvR5) Again, I was upset. I never imagined that this medication would not kill the little bastards. After I finished the meds I requested a second test to determine if the bacteria had been eradicated. The doctor told me that he would not order a second test just for "my peace of mind." It was time for me to find a new doctor.
I found another Gastroenterologist and gave him my whole long story. He immediately ordered another test to determine if I was rid of the little buggers. This test was not unpleasant at all; I had to drink a small amount of liquid and then breath into a bag.
My results came in a few days later and my doctor was surprised. He said that I had the "highest positive reading he has ever seen in his practice." I then asked him what the next step was. He said that we could continue to just blindly treat with stronger antibiotics, or he could go in and take a biopsy of my stomach and run a culture on it. He told me that this would determine exactly what strand of the bacteria I had and what it was sensitive to so I could take the proper combination of antibiotics this time. I agreed to do the second option. (Which I feel should have been the first option I was given, so I didn't develop un-needed immunities to such widely prescribed antibiotics like Amoxicillin and Clarithromycin.)
I had this procedure a couple of weeks ago, and it went well. I was peacefully sleeping thanks to Propofal (that is the Michael Jackson killer, for those interested, but it was administered by an anesthesiologist so I wasn't worried).
I awaited *patiently* for my test results, when I got a call from the P.A. at my Dr's office. My biopsy tested positivity for H. Pylori, but the culture did not grow any bacteria. I asked why this happened. She told me that, most likely, the live bacteria died while in transport to the laboratory. So, I came away from that procedure with NO new information. With no other option, my Dr. prescribed me a new set of medication that may or may not kill the bacteria.
I am currently taking 80 mg of Nexium, 2080 mg of bismuth subsalicylate, 1000 mg of metronidazole, and 2000 mg of tetracycline daily. This new medication regimen requires to take medication 4 times a day for 14 days, and unfortunately the side effect of these medications is dizziness, and nausea. I remain optomistic that this will be my final treatment for this frustrating illness.
My purpose in writing this post is not to complain about my battle with this little bug, but really to spread awareness of this infection. Everyone has heard of HPV (the cancer causing virus), but noone has heard of this cancer causing infection that effects far more people world wide. A vast majority of whom don't even know they are infected. If this post can inform 1 person, who requests to be tested and treated, then it was worth it.
I will post updates as I continue struggling with this bacteria.
