Zinn (Emily)

As many of you recently learned, Zinn (also known as Emily) is very ill. She needs our help. I am writing this now that she has a proper diagnosis, which provides a perspective that we did not have before, we were lost in the western medical system of symptom management. But we are finally SO optomistic that she can actually feel better some day. 


For the last 3 years, she has been struggling with her health, but looking back she’s been dealing with various forms of this illness for a decade or longer. The first obvious sign was being diagnosed with Type 1 Diabetes at age 26, which is classified as an autoimmune disease. We thought that was addressed and manageable - after all, the incidence of young adults being diagnosed with Type 1 Diabetes was increasing, perhaps she was just one of them. Fast forward to nearly 3 years ago, and skipping past several seemingly minor health issues, when several real and unshakable symptoms kicked in. Zinn got sick in early 2016 and has never felt the same again.  She has endured multiple ER visits and numerous hospital stays.  Most often these visits would lead to months of waiting lists, new specialists and further frustration & confusion. She was misdiagnosed with everything from Lupus to fibromyalgia to MS, and most often "emotional misdiagnoses” like repressed trauma and psychosis. When they weren’t playing it off as something in her head, the only thing the medical professionals could agree on was that she was suffering from an autoimmune disorder they hadn’t figured out yet. One of the only diagnosis that still stands from that time is Rheumatoid Arthritis (RA).

Meanwhile her health continued to decline, and she began to experience longer and longer bouts of symptoms that didn’t make sense. It got to the point where she was able to function for a day or two, sometimes longer, but usually just enough to show her face and convince everyone she was fine. Then retreat home and fall apart. She would be in bed for several days, unable to walk or wash her hair, for days at a time. Thanks to the many misdiagnoses she was drowning in prescription drugs, but her episodes kept getting worse and worse. In the last year or so her brain started having episodes too. She would “check out” for a period of time and return, not remembering exactly what transpired. When asked, she could only say she was cloudy & her brain was not working properly, she had no memories of chunks of time.

Turning point: in preparation for a writing workshop at Corporeal Writing, she read the book SICK by Porochista Khakpour. She knew immediately that she had Lyme (thank you Porochista Khakpour, the book quite possibly saved her life). Zinn also knew she needed a doctor who was Lyme literate, a care manager and full time care takers. She had steadily declined to that point. She also knew that the Lyme Doctor she needed to see and the full-time care she required was in the Midwest, where her Mom and PaPa live.  For anyone who knows my sister this IS A HUGE DEAL. She’s independent and she loves the PNW, her job and her family.

We found an MD in Kansas City, MO (a functional doctor, which is a helpful term for anyone not getting better or not being heard by our “American medical system”). Zinn had an initial visit in August - the Dr had a cancellation that just so happened to coincide perfectly with a trip Zinn had scheduled to visit her Mom - and spent several hours with the doctor. After taking the time to understand the symptoms of a bedridden 35 year old MANY tests were ordered, all outside the general blood panels & scans, and the results defined what we had been searching for over the last 3+ years: 
DIAGNOSIS: CIRS (Chronic Inflammatory Response Syndrome) which underlies all the diagnoses that follow. CIRS is genetic disorder that leaves her body unable to get rid of toxins like the rest of us can. Though we don’t know exactly how long the toxins & inflammation have been building, it’s likely been years. The constant inflammation is the probable cause of her autoimmune disorders (Type 1 Diabetes & RA). The most immediate issue caused by CIRS is a toxic build up of mold and aluminum, primarily in her brain, hence the confusion mentioned earlier.
SECOND DIAGNOSIS (and 3rd & 4th):  Zinn’s bloodwork also showed markers for late stage Lyme. If that’s not enough, she’s also being treated for 2 other tick bite diseases: Bartonellosis & Rickettsiosis. It’s also important to note that bartonellosis, mold, and aluminum all affect the brain. Though it’s hard to pin point what is causing what, all of them can be responsible for her recent unusual character. She often has a hard time with noise and light and can also have negative & suspicious thoughts of anyone and everyone depending on the day. All classically charasteric of the CIRS, Lyme, Bartonellosis & Rickettsiosis. 

After nearly 3 years of not knowing & steady decline, we are so optimistic now that we finally have answers and a path forward. Unfortunately, that also includes 3 years of mounting medical bills and the fact that the solution lies with a highly capable Doctor that is NOT covered by insurance. (Surprise! Maybe insurance companies are tricking everyone!)  The immediate treatment cost, her lost income, the acquired medical debt, her family needs and the expensive bubble she needs to live in all add up to an insurmountable cost. 

We know battling CIRS & Lyme and the chronic conditions that go along with it will be ongoing, it is our hope that with your help we can get her to the point where she can manage her own care & return to (an improved version of) her life again, which includes simple things like reading with her child and seeing him perform in musicals & comedy shows! We are grateful for any contribution you can make. 

Over the last few weeks Zinn insists on "coming out” with what her chronic illness looks like, so we have set up a social media platform to share her treatment and progress. Hopefully, she still likes this idea when she returns to her old self, and we can use it to help others fighting silent health battles. To watch her progress please follow Chronic.Ilnness.Damnation on instagram or look for updates via her facebook page. Everything helps, including donations of any amount, but also sharing this information with people who love Zinn. Many thanks.