The never ending story of Lyme and related illnesses....

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This is a very abbreviated story of my experiences. I have left so much out, but I think you get the picture.

Back in the 80's, I was in my mid 20's. I had my own business. Began feeling fatigued along with joint pain and other symptoms. Found a rash. Went to over 10 doctors over 10 years. Not one doctor would test for Lyme. Brought news articles for each appointment: Lyme, EBV, Chronic Fatigue,etc.... EVERY doctor said "You're young. you're stressed..." and blew me off.

Symptoms would wax and wane over the first bunch of years, leaving me bedridden for weeks and even months. I sometimes could be fully functional back then. I'd run, jog, bike, hike, swim...was even a P/T personal trainer at a local gym for a while. I'd get pain, fatigue...but it would pass. I would work through it. I began running less because my hip became so painful, thought I pulled something. Then my knee locked into a 90 degree angle after a walkathon. Surgeon wanted to do surgery. I refused. It improved on own. My wrists would hurt, and burn. Carpal Tunnel. Another surgeron wanted to do surgery. I refused. Still no doctor would agree to test for Lyme. Many other symptoms, seemingly unconnected. I could not connect the dots and no doctor would even attempt.

I was a workaholic. Single. Independent. No close family. I had long given up my biz and began working in real estate. Up and down stairs, in and out of cars. Symptoms persisted. I was promoted to assistant manager of two real estate offices. Very long hours. Corporate dangling the carrrot kind of pressure. I began trembling for no reason. Depressed, extremely fatigued. Unrestful sleep. Migranes, Low body temperature. I couldn't retain information. I couldn't comprehend corporate reports any longer.

Went back to a doctor yet again. A new doctor was taking his overload and she finally agreed to test me for Lyme. On Dec 24, 1997 (or 96) I recieved a call from her that I had Lyme, EBV, CFS and Fibromyalgia. A few weeks of antibiotics, but symptoms didn't improve. Doctor didn't believe me at first...until she spoke to a colleague who had to give up her practice beccause of Lyme. My doctor researched and fought on my behalf to get me continued treatment. The health insurance company repeatedly refused to admit me to hospital, have IV antibiotics or even outpatient IV.

Unfortunately, this doctor left the state and I never found ANYONE to care or try to learn about my disease like she had ever since

My last neurologist, after months, years of tests said there was nothing more he could do. My PCP said I shoud see a pscychitrist. Abandoned by doctors left and right. It is isolating, exhausting and depressing.

I have been on the hamster wheel of doctors, tests all this time. Spinal taps, EEGs, EKGs, brain electrical studies, full scans, you name it times three. Brain lesions, cysts on spleen and brain, nerve damage, IBS, tons of symptoms and diagnosis that doctors wish to treat with anti-depressants, anti-anxiety and pain meds. I take none of their zombie medications.

To this day -2015- NO DOCTOR will admit I have CHRONIC LYME. I am unable to afford LLMD care or many supplements. I am now losing my home, my business (I started advertising biz 18 years ago with home office), I cannot afford proper food or meds, am not able to properly take care of my dogs (my ONLY family), I have lost the last friend (of 30 years) just recently.

Even though completely alone and ostracized, I refuse to give up...until the next time I am bedridden and overwhelmed with pain and weakness. I continue to be an advocate for invisible illnesses by starting a page 'But, you Don't look Sick" and my "A Little Lyme Laughter" page as well as dozens of memes I create and circulate though all facebook spaces.

What I have learned is that Chronic Lyme (and other invisible illnesses) are not casserole diseases. When you hear of someone with cancer, people band together, bring over casseroles, offer to walk your dog, take you to doctor, help you raise funds to pay your medical and household expenses, share your story. Not for me. people have quietly faded away...even thoose I had been there for over the years, are no where to be found. Sad and enlightening.

 

Forgive my typos. My brain is pretty good today, but not what it should be.