Good morning! I’ve decided to use my blog not only to writing, music, and other facets of entertainment, but, also to share my journey. I’ve had significant health problems for almost three years. Initially, a rheumatologist diagnosed me with systemic lupus (SLE) on June 19, 2013. However, the medication wasn’t working and I kept getting worse and developing new symptoms. So, after second, third, and fourth opinions, my neurologist believes instead I have fibromyalgia.
In April 2014 I visited yet another rheumatologist who I hoped would be familiar with autoimmune disorders. Following an extensive intake during my initial appointment, I found a place where the doctor also listened to me. Based upon my blood work, the doctor believes I have Sjogren’s Syndrome. She also made the diagnosis of Fibromyalgia and pre-lupus. I’ve never heard of pre-lupus, but, hopefully it stays in the “pre” category.
Thank you for listening, each week I will have a new installment chronicling my journey- Which is now more frustrating than ever. I test positive for ANAs in my blood, but, the lupus tests are negative. There are several varieties of autoimmune disorders, with different caveats and health variations. Learning to live with the unknown has become my routine. With worsening symptoms, I consulted an amazing oncologist, Dr. Gerardo Trillo at Texas Oncology.
HELICOBACTER PYLORI INVASION
Out of the multitude of lab work the doctor ordered, one that came back positive was the H. Pylori bacteria. This disgusting, creepy bacterium resembles some type of parasite. It’s all I can do to try to forget about it without wanting to take a paint scraper to my insides. Dr. Trillo described it as having tentacles with little pliers on the end of each one. It burrows into your stomach lining and clenches in with those pliers. Uber. Ick.
According to the Mayo Clinic - Mayo Clinic H. Pylori
“H. pylori infection occurs when a type of bacteria called Helicobacter pylori (H. pylori) infects your stomach. This usually happens during childhood. A common cause of peptic ulcers, H. pylori infection may be present in more than half the people in the world.
Most people don't realize they have H. pylori infection, because they never get sick from it. If you develop signs and symptoms of a peptic ulcer, your doctor will probably test you for H. pylori infection, because it can be treated with antibiotics.”
In all the vials of blood I’ve given, never once was I tested for H. Pylori, along with some other tests I now believe should have been ordered. I will get into that in a different blog post. However, I’m so thankful Dr. Trillo thinks outside the box. Anyone diagnosed with an autoimmune disease is likely NOT TEXTBOOK. I found two doctors who admit I’m a puzzle and want to help me figure it out.
Dr. Trillo called me a “tough cookie”. Love it.
Back to topic- In the daily fight waged within my immune system, the H. Pylori bacteria creates an infection that may cause ulcers, gastritis, and even cancer. Not everyone infected will actually develop cancer, but, it’s a very real possibility.
Again from the Mayo Clinic –
“Most people with H. pylori infection will never have any signs or symptoms. It's not clear why this is, but some people may be born with more resistance to the harmful effects of H. pylori.
When signs or symptoms do occur with H. pylori infection, they may include:
•An ache or burning pain in your abdomen
•Abdominal pain that's worse when your stomach is empty
•Loss of appetite
•Unintentional weight loss
When to see a doctor
Make an appointment with your doctor if you notice any persistent signs and symptoms that worry you. Seek immediate medical help if you experience:
•Severe or persistent abdominal pain
•Bloody or black tarry stools
•Bloody or black vomit or vomit that looks like coffee grounds
In my case, I was already consulting doctor after doctor in a quest to get to the root of my seriously declining health problems. I’m to the point that keeping up in simple yoga is sometimes too much for me to handle. I was doing triathlons 3 years ago and my condition really really sucks now- it’s depressing and frustrating. I’ve gained 30 pounds in 3 years. Yes, 30, that’s like 3 or 4 babies or 6 bags of sugar.
Imagine me with 6 bags of sugar duct taped to my mid-section. Can someone say “Cortisol”? Having this infection may lead to an increase in cortisol, resulting in stubborn belly fat making my midsection horribly distended, fat, and bloated. It’s not just the aesthetics of it all, it increases the risk of heart disease and high blood pressure when fat accumulates in the mid-section.
I’m smack dab in the middle of the prescription therapy for H. Pylori. My doc prescribed 2000 mg daily of antibiotics and 60 mg of an acid blocker. It’s part of a ready packaged regimen that I hope does the trick.
I will have follow up testing to check for any remainder of the H. Pylori. I will also have an endoscopy and colonoscopy next month. I bet you can’t wait for that blog post.
Take charge of your health. My rheumy patted me on the back and told me that my symptoms were just part of the fibromyalgia. I looked over my lab results and said NO. I kept researching, not to diagnose myself, but, to find a doctor to listen to me and help me. I believe I’m finally on my way.
Hugs to you all and infinite love.