This is a post from 2014 that is just as relevant today as it was then. Lyme kills and it’s totally preventable. Here’s a snapshot of my story at the time. It’s a rather disjointed post as I’m very sick at the time. The facts are the same, the CDC doesn’t have a proper record of Lyme cases and still doesn’t acknowledge that long-term Lyme exists which relates to insurance not paying for care.
We were put in the very position of having to take out a second loan on our house for my $150,000 medical bills. I still have many complications with my health today some most likely related to Lyme.
Yes, Warrior was the nickname I went by in 2014.
Over the past 6+ months, my Neurologist has performed every test in her arsenal except a spinal. Every test she ran came back abnormal yet she was not able to pin down a diagnosis (see post Are Those My Brainwaves). She referred me to a Rheumatologist to start on the treadmill again.
I started researching illnesses that included brain wave abnormalities to weed out my more common symptoms. There were the ones I expected, Lupus, Multiple Sclerosis, or other autoimmune disorders. I didn’t think my answer would come from RA Doctor.
More research and what I found was alarming, not the illness alone, but 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. The standard Lyme test is based on 20-year-old information. What happens is you go to the doctor for a Lyme test, and 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. What blew my mind was 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 on 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 a 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. Here’s the rub, the CDC states that 2 weeks of antibiotics will cure Lyme and doctors can prescribe an extra 2 weeks if needed. Medicare pays based on the standard set by the CDC. Insurance companies only pay what Medicare pays.
Doctors treating Lyme patients until they start to get called before the Medical Review Board and have their license taken away for a year. Insurance companies are canceling people’s policies and they are left with 150k+ in out-of-pocket expenses. People have to decide do they lose their house or get their loved one’s treatment. It is heartbreaking to watch the videos on YouTube.
There are two main associations which doctors join, it has become one assoc. for long-term treatment and the other against. Most doctors go underground and do not list themselves as Lyme Literate.
When I decided to seek out a Lyme Literate doctor it was a process. I called the association, and they took the 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 license for a year. I didn’t know if I should jump for joy or not.
I can’t stress enough how serious the illness can get. I’m battling over 50 symptoms on any given day. The size of tick you are looking for is a nymph about the size of a sesame seed. When you’re doing tick checks on you and the kids, these are hard to see. Around 30% of people get a bulls-eye rash. 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. Warrior