“We would know if you had Lyme disease.”
“Well do you have a skin rash?”
“Chronic Lyme is something doctors say to take advantage of their patients.”
“If you had Lyme, you would have the antibodies and would be able to tell from your white count.”
These are all comments I’ve been met with when I’ve asked about Chronic Lyme Disease to doctors I’ve seen in the past. A couple of years ago my primary care doctor ran an ELISA test to appease me and lo and behold, it was negative. This isn’t too surprising as that test is known to be very inaccurate and misses about 60% of Lyme cases.
Over the years I’ve been given several disjointed diagnoses for the symptoms that have cropped up all over my body. The constant headache was NDPH, the low blood pressure, chest pain, heart palpitations, PVCs, and pre-syncope was POTS, the weight loss and nausea was labeled idiopathic when all of my test came back clean, the blue fingers and toes were idiopathic Raynaud’s disease, the debilitating fatigue was Chronic Fatigue Syndrome… None of these things were tied together though and there was never an underlying cause found. While the diagnoses themselves are probably accurate, I couldn’t accept that they all just happened out of the blue with no connection. So the research continued.
I had come across Chronic Lyme in the past but because it is so difficult to get properly diagnosed, I decided to knock out the easier possibilities that insurance would cover first. I was treated aggressively for NDPH (the most debilitating of all of my issues) but despite six hospital admissions, countless drugs, and a neurostimulator implant, I am still not well enough to return to working. You see, the CDC does not admit that Chronic Lyme is a real disease. They use the term “Post Treatment Lyme Disease Syndrome” and argue that 2-4 weeks of antibiotics is curative of Lyme and that sometimes the symptoms just persist but there is nothing to do about it. This means that insurance companies do not have to approve any Chronic Lyme treatment, making this a very expensive disease to manage because so much of it is out of pocket. This is also why there are so few physicians who will treat it. There are only three Lyme specialists in the state of Indiana.
When my long awaited admission for a 5-7 day Lidocaine infusion was not approved by insurance, I decided to chase down the question that has always been in the back of my mind. The more I learned about Chronic Lyme, the more I became convinced that it was the answer. Not only did it explain my current symptoms but it also explains so much of my milder issues I dealt with in high school. I reached out to the International Lyme and Associated Diseases Society for help in finding a Lyme literate doctor in state. The first LLMD was right here in my town but is so overwhelmed, she cannot accept any new patients. The second phone call I made was to the doc about two hours away from me. She was also swamped and would not be accepting new patients until the end of August and would be scheduling those new patients for October or later appointments. Finally on the third phone call to a specialist three hours north, I had the orders for the more accurate test along with a test for a co-infection called Babesia.
One week later on August 21st I got the call to say that I did indeed have Lyme and Babesia. As strange as it sounds, my family, friends, and I were thrilled! When you have lived with a mysterious illness for so long and watched as everything that makes your life yours crumble away with no way to stop it, finding a name for that demon is like Christmas morning! Now that it has been named, we can better know how to fight it and hopefully achieve remission.
Chronic Lyme Disease is difficult to treat because the bacteria is so smart. It can exist in the body in the form of spirochetes, cystic bodies, and biofilms. The co-infections make treatment even more complicated and while I have been tested for one, I have several symptoms of another called Bartonella. So much of the treatment is holistic, meaning there are a lot of diet changes and supplements which are all out of pocket expenses making it a very costly disease.
This is just the beginning of a difficult battle ahead as treatment can be brutal but it is a battle I’m so ready to take on. Finding a diagnosis has been so helpful mentally and emotionally because now I know that no matter what any doctor has said to me in the past, I am not overly dramatic. I am not a drug or attention seeker. I am just a girl who knows her body and refused to give up on finding an answer.