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7 Things You Probably Don’t Know About Lyme Disease

Most people have heard of Lyme disease, the infection that is passed onto humans (and animals) through the bite of a tick. Celebrities – like authors Amy Tan and Rebecca Wells and singer Avril Lavigne – have spoken publicly about their struggles with Lyme disease, so many people even recognize that it can be serious. There are, however, still many myths about this rapidly growing health concern that might get in the way of you or a loved one being accurately diagnosed and getting the proper treatment. Here’s what you need to know:

Ticks carry many infections, not just Lyme disease.

Lyme disease gets the media spotlight, but it is only one of about a dozen common infections  that ticks transmit to humans. In some regions, these other infections are even more common than Lyme! The hitch is that if you have multiple tick-borne infections but only treat Lyme, you can’t get rid of the Lyme and will only get worse over time. This happened to our own son. We knew he had Lyme disease when he was younger, but no one suggested checking for other tick infections. Three years later (by which time he was seriously ill), we found out he had two other tick infections…and still had Lyme. 

Many who get tick infections don’t even know they’ve been bitten by a tick.

You don’t have to be an avid outdoors person tramping through the woods to get tick infections; plenty of people get them in their own yards (anywhere there are deer and mice, which are tick carriers). You can pick up ticks walking your dog, gardening, just walking across the lawn, or from your pets. The ticks that transmit infections are tiny – the size of the period at the end of this sentence. So, even if you carefully check yourself for ticks after being outdoors (something everyone should do), you can still miss one. They like to hide in dark, tight places, like behind your ears, in armpits, on your scalp, and in the groin area, which makes them even harder to find.

The characteristic rash only occurs in about 50% of Lyme cases and doesn’t always look like a bulls-eye.

You may have heard that Lyme causes a rash that looks like a bulls-eye. Yes, it does…but only sometimes. In some cases, the rash looks nothing like a bulls-eye, just like an ordinary red rash, and in a full 50% of cases, there is no rash at all, so no telltale sign that you’ve been bitten by a tick. However, the opposite is true: if you do get that characteristic bulls-eye rash, then you absolutely do have Lyme disease (and possibly other tick infections, too).

Blood tests – even the very best ones – are prone to false negatives, so a negative test result doesn’t mean you don’t have Lyme.

This is probably the most important item on this list because a lot of people are tested for Lyme disease, get a negative result, and are told that they don’t have Lyme, leaving them with no answer for their continuing symptoms. There are many complicated reasons why Lyme testing is not reliable, but two main factors help to explain it: the spirochete (spiral-shaped) bacteria that cause Lyme do not stay in the bloodstream but “hide” in tissues and joints (hence, the characteristic joint pain) and not everyone makes antibodies to Lyme. The best screening tests catch about 65% of Lyme cases. Some of the other common tick infections have even less reliable testing.

Lyme and other tick infections should be diagnosed clinically: an experienced doctor should look at symptoms, history, and a physical exam, in addition to test results. Some of the other common tick infections have very distinctive symptoms that can provide an immediate diagnosis, and if you have one tick infection, then you know you were bitten by an infected tick. For instance, bartonella (also known as Cat Scratch Fever) causes a rash that looks like either stretch marks or scratches. Finding a doctor with enough experience to recognize the different tick infections can be challenging. The best approach is to look for a Lyme specialist, also known as an LLMD or Lyme Literate MD.

Symptoms of Lyme and other tick infections vary greatly from one person to another and can closely mimic other diseases – Lyme’s nickname is “The Great Pretender.”

This is the other side of the difficulty in diagnosing Lyme disease and other tick infections: they can look exactly like other diseases, including MS, Parkinson’s, Chronic Fatigue Syndrome (ME/CFS), Fibromyalgia, and others. Tick infections can even trigger mental illnesses, like depression, bipolar disorder, and schizophrenia. Many people have been misdiagnosed with some other disease before finding out – often years later – that they actually had tick infections all along. 

When left untreated, Lyme and other tick infections can cause serious and permanent neurological damage.

This is where it gets a little scary. Lyme disease and other tick infections are known to cause neurological problems (one of the reasons for the frequent misdiagnosis as other diseases) that often go away with treatment. However, if left untreated for a long time – years for many misdiagnosed patients – then permanent neurological damage can result. Some celebrity Lyme patients, like author Rebecca Wells, have discussed this publicly, to spread awareness of the seriousness of these infections. Author Amy Tan still suffers from epilepsy and other neurological problems after being treated for Lyme disease because she was sick for years before getting an accurate diagnosis.

The typical short-term antibiotic treatment is not enough for everyone, especially those who’ve had the infections for a long time.

Most mainstream doctors will treat Lyme disease with a short course of antibiotics – generally one month. This might be enough for you, if you noticed the tick bite or had the bulls-eye rash or have only had symptoms (usually flu-like symptoms) for a week AND you started treatment immediately. However, treatment is much more complicated if you:

  • Have had symptoms for weeks, months, or years;
  • Have other tick infection(s) beside Lyme;
  • Have developed any neurological symptoms;
  • Tried a short course of antibiotics and still have symptoms.

In those cases, you absolutely must see an LLMD (you should anyway, to find out whether you have other tick infections besides Lyme) who can establish a treatment regimen for you. This doesn’t necessarily mean long-term antibiotics (which can cause their own problems), but antibiotics are likely to be a part of the treatment plan. In fact, not all of the tick infections are even bacteria, and those that are bacteria don’t respond to the same antibiotics. It gets very complicated, and you need a doctor with plenty of experience with these infections.

Tick infections can be frightening, but plenty of people recover. Your best protection is prevention and information. Knowing what to look for – as well as the limits of current medical technology – can help you to recognize sooner when Lyme or other tick infections might be a possibility. Early detection and treatment are the keys to avoiding long-term health problems. Things get difficult when these infections go untreated for a long time, but even those with the worst stories of chronic Lyme disease – like Amy Tan, for instance – are much improved after treatment. Be aware of the facts and myths surrounding Lyme disease, know what to look for in yourself and your family, and act quickly to see an expert if tick infections are suspected.

Suzan Jackson is a freelance writer who has had ME/CFS (an immune disorder) for 15 years as well as Lyme disease more recently. She writes about topics related to health, travel, family, food, books and other pop culture. Sue writes two blogs: Living with ME/CFS at http://livewithcfs.blogspot.com and Book By Book at http://bookbybook.blogspot.com. You can follow Sue on Twitter at @livewithmecfs or @suebookbybook.