Once Bitten, Twice Shy: What You Should Know About Lyme Disease

Preventing Lyme Disease and PTLDS

So how do you prevent Lyme disease and PTLDS? It is unclear why there are those that respond to treatment and those that do not. The main thing to be aware of is keeping track of when you were bitten by the tick and then track your health in the days and months that follow. Inform your primary care provider (PCP) that you were bitten and ask their recommendations. Follow up with your PCP if you experience any symptoms of an acute Lyme infection.

The CDC recommends removing the tick as quickly as possible, using tweezers to pull the head out of your skin with steady, even pressure. Use alcohol or soap and water to thoroughly clean the area afterward. Avoid folklore remedies such as “painting” the tick with nail polish or petroleum jelly or using heat to make the tick detach from the skin. Your goal is to remove the tick as quickly as possible–do not wait for it to detach.

Personally, I have bought what is often referred to as a “Tick Key”. I have a number of these devices stashed in our hiking packs and first aid kits in my Jeep and in my RV. I also carry alcohol wipes and antibacterial ointment to treat the area after removal. There are other varieties out there, but this was one of the first and generally works rather well.

As RVers, we often find ourselves in environments loved by ticks. You can read a bit more about detecting tick bites and efficient removal in this article from Karen Minard.

What If You Haven’t Been Diagnosed?

So, what do you do if you did not have any symptoms right away but are concerned you may have Lyme Disease? Definitely follow up with your PCP. Ask for a blood test. There are two tests that are typically used to diagnose Lyme Disease. One is called the Lyme ELISA, the other, the Western Blot. The Lyme ELISA is usually used to detect acute Lyme whereas the Western Blot is typically used to confirm the ELISA test results or diagnose what is often referred to as PTLDS or Chronic Lyme.

According to the CDC, symptoms of Lyme disease that will often appear later include, but are not limited to:

• Severe headaches and neck stiffness
• Additional EM rashes on other areas of the body
• Facial palsy (loss of muscle tone or droop on one or both sides of the face)
• Arthritis with severe joint pain and swelling, particularly the knees and other large joints.
• Intermittent pain in tendons, muscles, joints, and bones
• Heart palpitations or an irregular heartbeat; aka Lyme Carditis
• Episodes of dizziness or shortness of breath
• Inflammation of the brain and spinal cord
• Nerve pain
• Shooting pains, numbness, or tingling in the hands or feet

In my case, I wasn’t diagnosed with acute Lyme so I didn’t receive treatment until it had been in my system for over 6 years. At that point, treatment is much more difficult and invasive. And since there is no real treatment protocol for that stage, finding a doctor to administer untested and unproven medications, never mind getting insurance to pay for them, is rather difficult.

Living with Lyme Disease

After two long and miserable treatments, I declined any further medications and opted to just manage my symptoms with herbs and vitamins. But taking that path also meant I may have a reduced lifespan. Evaluating my options, and realizing I may never make it to retirement, I decided to embark on the full-time RV adventure with my kids while I still could. There are definitely challenges taking this path, but for me, it was the better option.