Your blood work looks normal.
We can’t find anything.
I don’t know how to help you.
There’s nothing else we can do.
Have you heard this from the doctors and medical professionals in your life? If you’re a doctor, have you said them a time or two? These words used to be on repeat in my mind before I was officially diagnosed with CIRS (Chronic Inflammatory Response Syndrome). Thankfully, the anger I felt when replaying what I’d been told provided me with fuel to keep going and find answers for my health issues, even when others doubted there were any explanations.
I feel inspired to start writing this article on my CIRS recovery before I am even completely recovered. I hope that catches your attention and inspires you! This certainly feels like a milestone moment for me. To have the mental clarity, creative inspiration and physical energy to write was something I was not capable of one year ago. I couldn’t walk more than 10 ft., stand in the shower or even eat solid foods then. Those conditions were quite shocking. Before CIRS, I was known as a capable and adventurous entrepreneur, traveling foreign countries solo and hiking for miles in the mountains.
How could I feel confident writing about CIRS now while still in midst of some symptoms and yet to fully complete CIRS therapy? It is because I feel the changes. Recovery used to seem like a huge, solid, square, cement boulder, unmoving and too big to tackle. It has somehow, step-by-step, whittled down into a smooth, round wheel beginning to move and gain momentum. While there have certainly been bumps on the CIRS recovery road, the numbers now show that my body is changing for the better. I’ve always believed deep down that I could heal. And I am experiencing the results from following therapy not only in this body, but also in my mind and heart. Along the way, I’ve developed an ability to face fears, to learn that suffering is optional and to love more deeply.
Believing in the healing process is hard and an edge, particularly for a patient who has experienced years of symptoms, medical gaslighting and many misdiagnoses. Perhaps you have too and can relate. Now 10 months into recovery, following an Integrated Medicine approach to the Shoemaker Protocol for biotoxin illness, I have experienced many positive shifts in my health with a bit of recovery to go. From wheelchair, to walking to working some again, it is remarkable how the body can heal when given the proper support and therapies.
When my health rapidly declined, I realized how much I wanted to live and continue to engage in a full human life of experiences and feeling. And CIRS certainly is a journey that is FULL of feelings. One can experience the spectrum of emotions: from despair, loneliness, fear, depression and grief to anger, acceptance, hope, happiness and dare I say it, joy. Anyone who goes through the CIRS journey is an emotional, mental and physical warrior. The patients and the people in their lives who are strong enough to stand by them and believe them are heroines and heroes in my eyes.
My hope is that wherever you are on your CIRS journey or wherever your loved one or patient is on this path, that you all will glean some hope and a sense of stability from my words. My favorite doctor assured me at our first appointment that he would be my sherpa, carrying me through recovery. My life was unrecognizable. And I chose to trust him. While I cannot be your sherpa, sharing research, treatment steps and encouragement like Dr. Andrew Heyman can, I know I can be a compassionate guide and friend, reminding you of the possibility of what can be if you choose the Shoemaker path, if you choose and follow the path of evidence-based treatment for biotoxin illness.
I leave you with this…
To the doctors who have patients on their caseloads that are experiencing a laundry list of seemingly unrelated symptoms and not getting better, please do not stop listening or believing your patient. Keep your ears and hearts open to those with fatigue, aches, pains, insomnia, digestive issues, mental health changes, fears, weakness and more. They need you to learn about CIRS and the evidence-based Shoemaker therapy process. Ask if they have been exposed to toxins and water-damaged buildings. Partner with your patient and a CIRS doctor. Keep growing as a professional. Consider a wider perspective and allow yourself to wonder about the root cause of their issues. Don’t label a patient and shuffle them from specialist to specialist hoping someone else will figure them out. Be mindful of how you speak to these patients. Words have an impact. This illness is real. And there is hope.
To those people who have somehow begun to put the pieces together, realizing they could be ill from a biotoxin (mycotoxins, bacteria, fungi and beyond), congratulations. I see you and am cheering for you! You are on the right track. It may feel there is so much to learn and absorb, but know you are on your way if you are here now reading these words. Trust your inner knowing. Beware of misguided information online. I hope you are able to discern how important research is when choosing a treatment. Recovery is complex. Seek a CIRS doc to support you.
To those diagnosed with CIRS, as you weep for your old life, know that I am here and there is a community that will hold you as you heal. Remember there is much to be learned from this life changing experience and from choosing to let go every day. I believe you will become stronger, wiser and clearer in your life as you recover. As someone who has gone through the deep CIRS trenches and is beginning to come out the other side, remember you are NOT alone. Allow yourself to exhale. You can do this. Your body, mind and heart may even be transformed in the process, if you open to the possibility.
May the awareness of CIRS spread far and wide, helping to change millions of lives for the better.
Written by: Melanie Joy Pensak
CIRS patient, Mindfulness Teacher, Nature Meditation Leader, Speech-Language Pathologist and Lover of Life