Life with an Illness that Has No Cure

Imagine living with an illness that has no cure. An illness that much of the medical community does not understand or acknowledge. Imagine being misdiagnosed for years, yet waking up everyday to the same miserable reality; the reality of feeling like you are knocking on deaths doorstep.
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In the following paragraphs, Linsey Joy peels back the layers and gives and inside snippet of her journey…the winding road of mountains and valleys that many Lyme patients suffer through.
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“‘I’m dying,’ I whispered to one of the best doctors in the world while tears trickled down my cheeks. This wasn’t the first time I had said those words; no, I had told my family many times before. And they believed me because they saw it. I think the doctor believed me as well, because as he looked at me curled up in a ball on his couch, he started ordering test after test after test; however, none of these tests would prove to uncover the debilitating disease I had, and I would return home without answers… again.
I suffered for about five years with severe symptoms and no real answers. I went to about thirteen doctors (some great and some looney) and was sent to many specialties including Neurology, Rheumatology, Gastroenterology, Endocrinology, Psychology, Gynecology, Infectious Disease, Dermatology, and countless trips to the ER. Noticeable symptoms started in 2012 and progressed until I could no longer function. I was bedridden from 2014-1016. My symptoms included: extreme fatigue, headaches, migraines, rashes, muscle pain, muscle weakness, insomnia, depression, chills, sweats, tingling in hands and feet, weight loss (I was down to 88 pounds at my worst), digestive issues, constipation, bloating, food allergies, brain fog, dizziness, lightheaded, fainting spells, swollen eyelids, white lesion on brain (MRI), Interstitial Cystitis, tingling and pinpricks, low body temperature, hair loss, anxiety, neck pain, hormonal imbalance. I was ‘diagnosed’ with vague conditions such as Fibromyalgia, Chronic Fatigue Syndrome, Depression, but I would not accept these diagnoses.
In August of 2016, I was finally correctly diagnosed with chronic Lyme Disease and two co-infections by an LLMD (Lyme Literate Doctor). I had had Lyme since the late 1990s. In December of 2017, I was declared in remission.”
~ Linsey Joy
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Living for years with a variety of medical issues that take over every part of your body is a scary reality. It is frustrating when doctors perform test after test that all come back “normal”. Patients who suffer from Lyme disease are forced to educate themselves and fight for a doctor who will listen. They are forced to put the pieces of a scary reality together and find help. The process is lengthy and costly as insurance companies usually do not pay for the extensive treatment Lyme patients need. Chronic Lyme Disease is a misunderstood illness. I will work to continue to raise awareness for this illness that has no cure.

To the “Lymies”: There is hope. Keep fighting for another day. Linsey and myself are proof.