Being diaognosed with Chronic Lyme Disorder in 2014/2015 changed my life and my husbands forever. After 18 months of IV Antibiotic Treatments, I survived, and in remission at this time. Since the spirokettes remain in your body, your body can continue to decline whether in remission or not.

Over a 12 months of testing, my Neurologist has performed every test in her arsenal except a spinal. Every test she ran came back abnormal yet not able to pin down a diagnosis. She refered me to a Rheumatologist to start on the tread mill again. I started researching illnesses which included brain wave abnormalities to weed out my more common symptoms. There were the ones I expected, Lupus, Multiple Sclerosis or other autoimmune disorder. I didn’t think the answer would come from the crazy searches by using the abnormal test results and symptoms in every combination possible, I thought I had the answer and I did.

More reasearch and what I found was alarming, not the illness alone, the politics and witch hunt taking place. The illness is Lyme or other tick borne illnesses. The CDC rates Texas as med-high concentration. The east coast is at epidemic levels with some articles stating we are facing epidemic levels across the country. I had a different idea for this post yet feel it’s critical to get this information out ASAP. When I learned of the divide in the medical community over Lyme, I shook my head. What is the controversy? The CDC establishes treatment standards for doctors and the standard Lyme test is based on 30-year-old information. What happens is you go to doctor for a Lyme test, it comes back negative. You then find out the test is 30% +/- correct. The CDC acknowledges the test has false positives yet the standard for testing hasn’t changed.

With a lack of confidence in the test, I wanted to see a Lyme Literate Doctor. This blew my mind, a current day Salem Witch Hunt is happening. On one side of the controversy are doctors who specialize in Lyme and tick borne illness. If a tick bite is not caught right away it grows in your system. Lyme looks like a long skinny curly worm. It bores thru your body damaging your organs or brain depending where it lands. The symptoms can move around your body as the virus spreads. Lyme is hard to kill, it can encapsulate itself in an invisible cocoon and is near impossible to see under microscope. The Lyme doctors take the approach, attack the virus aggressively for long periods of time to prevent a relapse. People who are very ill from Lyme can require years of antibiotics. Not only to kill the virus more importantly to save your life.  Heres the rub, the CDC states 2 weeks of antibiotics will cure Lyme  and doctors can prescribe an extra 2 weeks if needed.

Medical insurance companies only pay what the CDC approves and the CDC doen’t recognized Chronic Lyme Dieases nor in IV treatments. Some Lyme doctors are getting called before the Medical Review Board having their license taken away for a year. Insurance companies are cancelling people’s policy and they are left with 150k+ in out-of-pocket expenses. There are many patients who have to lose their house or get their loved one treatment.

There are two main thoughst on Lyme Dieases, doctors that do not believe in Chronic Lyme Dieases and the others that do and are treating patients. The CDC hasn’t changed their rules on insuring Lyme treatments but I don’t think doctors are not under as big of a microscope.

When I decided to see a Lyme Literate doctor it was a process. I called the association, they took info on where I lived and would call back. The next morning I received a call with a doctor’s name and phone number. I later found out the doctor I’m seeing was the first to lose his licenses for a year. I didn’t know if I should jump for joy or not.

I’m battling over 50 symptoms on any given day from a tick that is smaller than a sesame seed. When you’re doing tick checks on you and the kids, ticks are hard to see. Around 30% to 50% of people get a bull’s-eye rash. If you get the rash go to the doctor right away and ask for a Lyme panel test.

Please remember to check your scalp, they can hang out in your hair. A flashlight might help with this task. I’ll keep you up to date on how my appointment goes. I’m not worried about what, I need an answer to move on to the next hurdle. I will do a f/u post including more information about treatments.

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Melinda

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