I started writing this post about a month ago about exciting news in the MS world. But life (or should I say illness) got in the way.

When physical pain knocks you off your keister everything else takes a back seat. 

The culprit in my little story is SIBO or small intestinal bacterial overgrowth. In basic terms, SIBO occurs when too many bacteria end up in the wrong place, namely the small intestine. SIBO commonly occurs when surgery or disease slows the passage of food and waste products in the digestive tract, creating a breeding ground for bacteria. It can often be the result of structural problems from several diseases.

There's a long list of possible causes that include low stomach acid, dysfunctional immune system (hmm), food poisoning, dysfunction of intestinal nerves, stress, and many others.

I had SIBO a few years ago and both times the pain was barely tolerable. It feels as if something is squeezing your gut while jagged edges stab at you. You want to scream in agony and pray for it to end.

Symptoms can include diarrhea, constipation, bloating, nausea, malnutrition, an uncomfortable feeling of fullness after eating, and unintentional weight loss.

This time I stupidly lived with the pain for months, thinking the cause was slow motility.  I figured it was one more issue I'd have to learn to live with.

But my gastroenterologist diagnosed SIBO, prescribed antibiotics (Xifaxin), and even though I'm on the fence on the benefits of probiotics I purchased some from my pharmacy.

So now I'm back to square one by following the Low FODMAP Diet as part of a comprehensive approach to getting rid of the bad bacteria.

By the way, according to the Cleveland Clinic, up to 80% of people with IBS (irritable bowel syndrome) have SIBO. And according to a study by the Canadian Society of Intestinal Research of the 6,132 individuals tested who have MS 28% of them also had IBS.

I'd say that's significant.

Bowel dysfunction is very common in people living with MS so having IBS was not a shocker, just another unwelcome guest.

Not surprisingly I had to resurrect my 35-year-old cane from the closet. The last two years of pandemic isolation, getting COVID, MS flares, looking for alternate housing, and boatloads of stress have taken their toll on my MS. Balance became an issue. Walking indoors in our small townhouse isn't a problem, but I rely on my cane when I take walks without my loving husband holding my hand.

So there it is, my explanation on why I haven't posted in a while. Now, onto the big news that I'm so thrilled about!!! Here's what I wrote in early February.

Drumroll, please!

By now almost everyone in the multiple sclerosis community has heard of the recent findings that the Epstein-Barr virus (EBV) may be the leading cause of MS! To say this is exciting news is an understatement.

For years we heard of a possible cause and effect relationship between EBV and MS but, like other theories, nothing came of it.

This time it's different. This time the study demonstrates the strongest evidence yet.

The study by Dr. Alberto Ascherio, professor of epidemiology and nutrition at Harvard Chan School who is senior author of the study, suggests that most MS cases could be prevented by stopping EBV, so it follows that targeting EBV could possibly lead to finding ways to cure MS.

The breadth of this study was larger than ever before (which is what you want in any study.) Based on the analysis of serum samples taken biennially by the military of 10 million young adults on active duty, it identified 955 of them were diagnosed with MS while in service.

The risk of MS increased 32 fold after infection with EBV (yet not after infection from other viruses.) That's quite significant.

To read an explanation (in easy-to-understand language) on these findings please click here for Science Daily. To read the findings in full click here for Science, January 13, 2022.

I also suggest listening to Dr. Ascherio, author of the study, as he shares his findings with Dr. Barry Singer, Director of the MS Center for Innovations in Care at Missouri Baptist Medical Center,  on his podcast at MS Living Well. Click here to listen in.

If you're skeptical after hearing about EBV and MS because you were never diagnosed with EBV, think again:

An estimated 90% - 95% of adults catch EBV (also called herpesvirus) which is one of the most common viruses. EBV can cause infectious mononucleosis (mono) and most people won't experience any symptoms.

Did you just have an "aha" moment? I did after hearing about mono since I had it as a child. 

When I heard the news about EBV I was somehow reminded of the opening sequence of Mad Men where a man slowly free falls toward the ground. (I know it's a stretch but I can't explain our thought processes.) Now stay with me here.

The free fall reminds me of the elusive quest to find a cure for our disease. Down, down, down we go.

It begins with a diagnosis and the free fall of learning comes with living with this strange disease.

I think that's a fair (perhaps odd) comparison.

Over the years I've often felt as if I was living in a metaphorical free fall.

How many "cures" did I hear about? How many times was I urged to remove my mercury dental fillings? Or try bee venom therapy? Or use certain supplements?  Or try an expensive, controversial cure that the medical community never accepted but allegedly helped some patients (and splintered some in the MS community)?

Countless.

Let's hope these findings will ultimately lead to a cure. Can you imagine that?

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END NOTE: With all the turmoil happening around the world and the lives lost to Covid and other horrific events, I'm deeply grateful for the blessings I have in my life. I want to make that clear.

My story might sound trivial compared to those who've suffered great loss over the last few years. I'm deeply sorry for whatever you're going through.

There will be others who don't understand invisible illness and will hear my story as one long complaint. I hope someday you'll come to understand and believe me, along with thousands of others worldwide who live in the invisible illness community and struggle with pain and illness every day that the naked eye can't see.

We tell our stories to give others hope, empowerment, and inspiration. I hope by breaking myself open in this post I've helped even one person.