Editor’s Note:  Merilee is the author of It’s Lovely, and an event planner and graphic designer in NYC.  She contacted us about a fundraising event being held tonight in NYC for Turn The Corner, a non profit dedicated to increasing knowledge and awareness about Lyme Disease.  Merilee forwarded us links to a movie about the disease and I was in total shock.  We asked her to blog about her experience with the disease, and request donations from our readers.  If you are in NYC, please consider going to the event tonight at Gotham Hall.

There is a common misconception about Lyme Disease that it is easy to diagnose and treat. In fact, this is not the case as the CDC Guidelines for diagnosis and treatment are not definitive and under great dispute.  Most doctors and the general public are simply unaware of this and therefore thousands of people go undiagnosed or misdiagnosed wreaking havoc on their lives not to mention their livelihoods.  Late diagnosed/Chronic Lyme Disease can get into every tissue and every organ of your body.

My husband suffered for 5 long years before being diagnosed with Lyme Disease. After exhibiting classic symptoms of Lyme early on, it was ruled out even after I objected, multiple times.  (I unfortunately was not aware then what I know now regarding the CDC Guidelines).  The doctors just kept scratching their heads.  He was in and out of hospitals and eventually almost died of near kidney failure.  The day before the near kidney failure episode, where he was hospitalized for a month and a half, he was told at a doctor’s appointment just the day before, while sweating profusely, with a high fever and clearly about to keel over, to see a psychiatrist.

His illness even affected our wedding and his ability to thoroughly enjoy it.  While it was a beautiful day nonetheless that I’ll never forget, it was about 2 ½ years after his illness had begun.  Note his hand in this picture.

It looks like that because it was completely numb.  He was in so much pain from the neuropathy in his feet that he barely danced at all, and he’s an amazing dancer!  After finally finding the right “Lyme Literate Doctor”, he was treated aggressively and is thankfully now doing well, but with permanent Central Nervous System and Kidney Damage.

Fast forward a bit to early 08.  My husband is off of the meds that cause birth defects.  We were reproductively challenged pre-Lyme and about to start my first IVF cycle when I learned about anticardiolipin antibody syndrome and the fact that a large percentage of Lyme patients test positive for ACL.  I checked my test results from the fertility specialists and although it’s supposed to be a “routine test” for the reproductively challenged, AND I described the classic symptoms to my doctors, I was never tested for it.  (It causes early or late miscarriage).   I was simply given a big box full of fertility drugs.  So, I made an appointment with my husband’s doctor.  I wasn’t feeling great per se, but am a self confessed workaholic and always attributed my misc. ill feeling, and lack of short term memory, to stress and soldiered through it.  I was off the charts positive for Lyme, Erlichiosis and ACL.

The ‘real treatment’, which involves what I refer to as a “pummeling of antibiotics” is not fun, but it works.  (You’ll notice after posting daily on my blog that I stopped short in early April.  That’s when my treatment had started). Now 20 pounds lighter, and feeling much better even still as I type this I can’t feel 4 of my fingers.  We’re working on that. However, my ACL is gone, and I can now remember where I left my keys!!!

The Turn the Corner Foundation supports and funds new research into the progression, treatment and prevention of Lyme Disease.  It is the Foundation’s goal to promote public awareness regarding how prevalent Lyme Disease actually is and to work with the medical industry to provide them with the resources that they need to properly diagnose and treat this debilitating disease. It is near and dear to my heart.

The money raised by TTC goes to fund initiatives such as their Physicians Training Program where in about two weeks, trainees become “Lyme-literate” through watching mentoring doctors in action with patients, reviewing different cases , and learning their individual approaches to diagnosis and treatment. These professionals bring this skill set back to their community in order to better care for their patients.

TTC was involved with the national distribution of the first feature length documentary about Lyme Disease, Under Our Skin. The film, which premiered at the prestigious Tribeca Film Festival this year, details the entire untold story of Lyme Disease by following the stories of patients and physicians.  The film brings into focus the disturbing picture of our health care system and its inability to cope with Lyme Disease.  Patients are suffering and doctors are being sued.  Check out some of the riveting footage from the film here.

TTC also provides grants to doctors and scientists who are working on groundbreaking research such as Dr. Alan MacDonald. Dr. MacDonald is exploring if a Borrelia Burgdoferi (Lyme related) infection is one of the causes of neurodegenerative diseases such as Alzheimer’s!  His research thus far looks like it does!  The film goes into this in more detail.

If you are considering a favor donation for your wedding, please consider a donation to Turn the Corner.  All donations be it for cash, a service or item are indeed tax deductible!

Thank you from the bottom of my heart for your generosity!