Idiopathic Illness

My eyes open on the morning of my 34th birthday feeling heavy like one of those lead dental x-ray vests. This occurs most mornings, which is odd for an otherwise obscenely early, early bird. An urgent care doctor reminds dismissively, “you’re a busy mom, it’s tiring.”

Normally this day would be punctuated by sweet crayon-doodled construction paper cards and sticky maple syrup kisses from my 4 and 6-year-old boys, but not this June 2nd. At the kitchen island, coffee in hand, my right arm and left foot go numb. Perhaps in a vacuum these symptoms would not raise a giant red flag, but I have just survived the hardest year of my life.

I have always suffered with chronic asthma, but the prior summer twelve different doctors were perplexed at six months of severe idiopathic (medical code for “we have no idea”) shortness of breath, and one swollen joint, which only responded to multiple rounds of antibiotics. On the heels of CT scans, x-rays, and endless blood-work, I am stricken with yet another idiopathic and incurable disorder. That Halloween, instead of helping unwrap candy bars for the tiny little costumed hands, I wonder how far we can trick-or-treat before running home to use the bathroom and heed the pain and urgency now defining each moment.

This diagnosis breaks me, it’s Interstitial Cystitis (IC), a member of the top ten most painful conditions a human can suffer from. Bladder pain every day, no known cause, no truly effective treatment, no cure. Pants hurt; a journal of bathroom trips adorns the counter. Liquid pain flows from my eyes, running down my cheek in the camouflage of darkness while I sing my little guys their bedtime songs. How will I live like this?

Trembling and crying, I ruminate on the life my kids will have with a sick mom, wondering what my husband feels and thinking that he deserves the version of “me” that said “I do.” The brain must have a safety gauge that maxes out on despair, because amid this mess curiosity about the connectedness of these medical anomalies begins to boil over.

Before throwing in my career towel to become a full-time mom, I worked for Pharmaceutical and Biotech companies. Many years out of the game, I still devour medical literature and love learning. Interpretation of research is empowering, but my battered brain is terrified of the answers it so voraciously craves.

The seat warmers in my mommy-mobile prove to be therapeutic for pain while peppermint tea begrudgingly becomes a suitable surrogate for my beloved coffee. Anxiety abates, and as moms do, I power through the discomfort. Courage to find the answer, whatever it may be, fills the abysmal void of uncertainty. Hatred for the word “idiopathic” fuels this newfound fortitude.

One simple Google search changes everything and sets the first of an infinitesimal set of dominos in motion. Suspicion and hypothesis become fact, backed by evidence. Shortness of breath and IC are connected. A certain form of atypical bacteria (Chlamydia pneumoniae) are found in the lining of eighty percent of women’s bladders with IC, and this same pathogen can produce an atypical pneumonia which causes shortness of breath. The chronic asthma I have had for 34 years is also strongly connected to this particular pathogen by published medical research. Glimmering hope replaces engulfing doom and gives way to a literal flood of questions.

The only person fit to fill in the blanks is the doctor several states away who conducted the study, so I find him. Assuming that a highly published, infectious disease specialist/microbiologist might be busy, it seems like a long-shot.  Drafting the story my heart throbs into my throat, and my clammy hands stick to the keys of my antique MacBook Pro.  There is nothing to lose at this point; I am already living in sweatpants and the bathroom. I click send and just moments later, he responds.  He is brief, but says that there is a simple blood test for antibodies to these bacteria, and if high enough, it signals chronic infection. The best part? It is treatable.

This compassionate physician then offers a phone consult with my primary care doctor. Lab results reveal that antibodies to the infection are present but beneath the treatment threshold (tests called IgG and IgM). They both presume that my body is waging the war, perhaps winning, and over the next three months my bladder pain improves. The pain abates and by May is barely perceptible and tolerable. It is a priceless gift to be given after six months of suffering. *(Later, after starting my consortium, I would have access to more accurate testing which confirmed the presence of Chlamydia pneumoniae in my blood by two separate means, DNA testing called “PCR”, as well as an antibody called “Chlamydia pneumoniae IgE”.)

One month into savoring the joy of relative wellness and peace, we return to the beginning of this tale with the third assault. Neurologic symptoms are no joke, and after working in that field I know it is as serious as a heart attack when one or multiple limbs lose sensation. On top of that, I begin having trouble coordinating my thumbs writing text messages, nerve pain behind my eyes, cognitive changes and brain fog. The litany of potential conditions file in, the worst of which shakes me to my core. My doctors recommend a brain MRI. They are ruling out Multiple Sclerosis.

Waiting for a test like this is akin to being trapped in a labyrinth of nightmares. Panic rears its increasingly familiar head, now to the tune of being slowly robbed of my physical and mental faculties, culminating in premature death. The MRI is exactly three days out, and I am jumping out of my skin. Certain that the wait alone is fatal, something hits me.

Suddenly a change washes over, cleansing my spirit. It is an indescribable sensation of widespread relief. One simple truth enters my aching, cluttered mind. If I have MS, I am still alive. I can fight, just as I have for a year now. My “why” is the same; my husband, my children, my family and friends. If I die, they will fight as I do. Suddenly, crippling fear evolves into acceptance of one of life’s few ubiquitous truths: We are all finite, and not a single one of us can predict when our time here is done.

As the twenty-something technician speaks to me through the microphone, the MRI machine draws my body in. I wonder what he is seeing on his screen as the hammering of the magnets is only mildly obscured by blasting 90’s music.  There is a bizarre calm surrounding me, and as I leave the room I steal a glance at the lingering image of my brain on his computer screen. Even in the absence of a definitive diagnosis, this feeling of peace persists. It isn’t apparent yet, but this experience marks a major turning point.

Letting go, being present in the moments with my children and husband is living, which is exactly the opposite of worry and fear. The call that my MRI is negative and completely normal does not evoke manic joy. Deciding that negative or positive news about my health no longer owns me yields freedom.

In all of this mysterious enigmatic illness, it is my close friend who is an emergency physician that finally says, “Have you been checked for Lyme disease?”

Days later the offender has a name; the blood test is positive. Two years of odd symptoms, and finally, an answer. My Infectious Disease doctor guides my PCP from afar, advising which antibiotics to prescribe. In all of this comes another beautiful and wholly unexpected development. My asthma is gone.

After suffering with it for 34 years, taking steroid inhalers every day, I am in remission. This supports the suspicion that I have not one, but two chronic intracellular infections. The true meaning of serendipity; the antibiotics that kill the Lyme bacteria Borrelia also kill the group of bacteria implicated in asthma and IC (Chlamydia pneumoniae, Mycoplasma pneumoniae and others). These are unique infections, infesting human cells and stealthily evading traditional testing methods and typical short courses of antibiotics.

Being free from fear, asthma, and sickness and empowered with knowledge has kicked off a journey. The first domino topples with what seems to be an isolated illness. Cascading through agony, now renewing hope and a true sense of purpose. This story is bigger than one sick mom. There are many different pathogens (bacteria, viruses, funghi, parasites) implicated in what we currently classify as inflammatory and autoimmune diseases. When we step back there are hundreds of thousands of potentially treatable patients. Instead of lead-vest fatigue and pain, a twinge of obligation punctuates each waking morning, but where do I begin?

Intracell Research Group answers the question. As a result of my journey I can guarantee a few things: I will share this story and help as many people as possible, I will be light for all of the others crying in the dark, and I will gobble up as many maple syrup kisses as humanly possible. While the exact progression of my illness might statistically be an “n of 1”, I am most certainly not alone, and neither are you.