The Danger of “Waiting and Seeing” With Lyme Disease

When someone finds an engorged tick, their doctor may tell them to “wait and see” if they develop a rash or other symptoms. This approach is downright dangerous. Here’s why.

Though ticks are a year-round threat, we are in prime season right now, as blacklegged (deer) nymph ticks search for a first meal. People I know have reported pulling ticks off themselves, their children, and their pets by the dozens. “We go for a walk in the neighborhood and my dog comes back covered in ticks,” one friend told me. Even if a dog is vaccinated against Lyme, it can still bring all those ticks into the house, where they then can bite humans. Outside, ticks are everywhere: not just in the woods, but in yards, parks, playgrounds, beach grass, and yes, even cities.

We can help ward off tick bites by using good preventive measures like wearing long, light-colored clothing; putting that clothing in the dryer on high heat after coming inside; using repellent containing DEET or picaridin; spraying clothing and gear with permethrin; using a lint brush to wipe down skin and clothes; showering after spending time outside; and doing daily tick checks. Despite our best efforts, though, we are still at risk. If you should notice a bite or find the tick itself (which you can save to get tested), you have a good chance of getting diagnosed early and treated appropriately.

But this is where it gets tricky. Even when someone finds an engorged tick, their doctor may tell them to “wait and see” if they develop an Erythema Migrans (EM) rash, commonly referred to as a bullseye rash, or symptoms such as fever, body aches, or facial palsy. The doctor will not treat the person for Lyme disease unless these symptoms appear. That approach is downright dangerous, and here’s why:

• Not everyone gets or sees a rash: We must dispel the myth that Lyme is always associated with the “tell-tale” bullseye rash. It can be. If you are lucky enough to see one of those rashes, you can be sure you have Lyme. But the reality is that less than 50% of Lyme patients get, or see, a rash at all. Others may develop the rash weeks, months, or even years after infection. And not all Lyme rashes are created equal. Mine was a series of red dots; other people get blotchy lesions. To wait for a rash to appear is to miss critical time in treating a Lyme infection early.

• Not everyone gets the same symptoms: While there are more common symptoms of Lyme disease such as flu-like malaise, fever, and joint aches, there are over 100 possible symptoms of Lyme disease. Lyme is called the “Great Imitator” because symptoms can mirror so many other conditions, such as rheumatoid arthritis and fibromyalgia. If someone with a known tick bite isn’t treated right away and then develops more nebulous symptoms like brain fog or chronic fatigue down the road, they may easily be misdiagnosed.

• Not everyone gets symptoms right away: Some people take weeks to develop symptoms. By then, the Lyme bacteria (spirochetes) may have disseminated to a later stage of disease, making it much more complicated to treat. Early intervention after a known tick bite can shorten overall treatment time and save someone from prolonged suffering.

• Ticks don’t only carry Lyme: The symptoms you may be waiting for, such as an EM rash, may never develop at all because you don’t in fact have Lyme; you have a different tick-borne illness. You may not know to look for symptoms of those, such as night-sweats or hypoglycemia with babesiosis (which requires different treatment than Lyme disease). Or, you may have contracted Lyme and co-infection(s). It’s important to ask your doctor about testing for all tick-borne illnesses, not just Lyme, when you have a known tick bite. A Lyme test does not cover these co-infections; you need to test for them specifically. And if your doctor tells you, “Oh, that was a dog tick, so you don’t have to worry,” make to test for illnesses that dog ticks carry, like Rocky Mountain Spotted Fever and tularemia.

• Tests are inaccurate: A doctor may tell you to “wait and see” what the tests results say before starting treatment. Because standard Lyme tests only look for antibodies against the bacteria, not the bacteria itself, they are notoriously inaccurate. It can take a while for someone to build up enough antibodies to show up on a test, which can dangerously delay treatment.

• Ticks can transmit diseases faster than you think: Many doctors subscribe to the old belief that a tick needs to be attached for at least 36 hours to transmit Lyme. But it’s hard to know exactly when a tick first became attached. Each hour—each minute—that a tick is attached, the greater the chance that it will infect you. Other tick-borne illnesses such as Powassan encephalitis can be transmitted in as little as 15 minutes.

A much safer bet, rather than “waiting and seeing”, is to treat immediately with antibiotics. Even if that treatment ends up being prophylactic, it is better to be safe than sorry.

Another dangerous time to use the “wait and see” approach with Lyme disease is after a round of treatment is complete. Most Lyme Literate Medical Doctors (LLMDs) treat for 21-28 days and then make continued clinical evaluation. If the patient’s symptoms have not cleared up, they continue treating the infection, rather than waiting to see what happens. Unfortunately, Centers for Disease Control (CDC) and Infectious Disease Society of America (IDSA) guidelines only call for 10-14 days of treatment, or even just one dose of Doxycycline as prophylactic treatment. Patients who experience symptoms beyond the initial course are often told they have something else. Untreated Lyme infection can then spread further into the body and cross the blood-brain barrier, causing symptoms that become much more difficult to treat. It’s important to remember that co-infections can also complicate and prolong treatment.

If you do a web search on Lyme disease, you will find lots of conflicting information. Some sites will tell you that there is a danger of Lyme over-diagnosis, or that long-term antibiotic treatment is dangerous (it has its risks, which any good LLMD will address). In my opinion, the greatest danger with Lyme disease is the “wait and see” approach. If you get a tick bite, or if you’re treated for Lyme but have ongoing symptoms, I encourage you to reject the “wait and see” approach, and to instead be proactive. Your health is at stake!