Tag: lyme disease

What is a Lyme-Literate Doctor?

By most definitions, a person who is literate is well educated.

So a “Lyme literate” doctor is good thing, right?

What is a Lyme-Literate Doctor?

That you can get Lyme disease after a tick bite is well known by most folks, even if they don’t live in an area with a lot of confirmed cases.

The majority of Lyme disease cases, about 95% of confirmed cases, are reported in just 14 states.
The majority of Lyme disease cases, about 95% of confirmed cases, are reported in just 14 states.

Early symptoms are also well-known, including flu-like symptoms ( fever, chills, headache, fatigue, muscle and joint aches), swollen lymph nodes, and the classic erythma migrans rash.

Later symptoms of Lyme disease, when it isn’t treated right away, can include more rashes, arthritis, heart palpitations or an irregular heart beat, facial palsy, severe headaches and neck stiffness, nerve pain, and problems with short-term memory.

Fortunately, that there are many antibiotic regimens that can effectively treat Lyme disease, including amoxicillin, isn’t a huge secret.

So do you need to see a “Lyme literate” doctor to get diagnosed and treated if you think you have Lyme disease?

That’s actually the last thing you want to do.

The first thing you want to understand is that the term “Lyme literate” doctors is actually kind of ironic. These are not literate doctors, at least not in the sense that they are educated and practice evidence based medicine.

Quest Diagnostics says that they have detected Lyme in all 50 states, even Arizona and Colorado, even though they are among the 8 states that don't have any of the Ixodes ticks that transmit Lyme... Are those really the states "where people are being infected?"
Quest Diagnostics says that they have detected Lyme in all 50 states, even Arizona and Colorado, even though they are among the eight states that don’t have any of the Ixodes ticks that transmit Lyme… Are those really the states “where people are being infected?”

They are often alternative medicine providers who think that you can get Lyme disease anywhere, even if you don’t live in and haven’t traveled to an area with ticks capable of transmitting Lyme disease.

Many also diagnose folks with many different kinds of non-specific symptoms as having Lyme disease, especially because they misuse tests for Lyme disease as screening tests, or simply misinterpret the results. Tests that often lead to false positive results and folks getting misdiagnosed with chronic Lyme disease.

“Once serum antibodies to B. burgdorferi do develop, both IgG and IgM may persist for many years despite adequate treatment and clinical cure of the illness”

Murray et al. on Lyme Disease

They also often think that it is likely that if you have Lyme disease, then you are also likely to have many coinfections, including Bartonella or Mycoplasma. And that the Borrelia burgdorferi bacteria can hide in our bodies, creating persistent infections, even passing through breastmilk or causing congenital Lyme disease.

“You can access a variety of online resources and directories to locate doctors who are specifically trained in identifying and treating tick-borne illnesses. This is particularly important if you suspect that you may have Lyme disease since it is the most frequently misdiagnosed of all tick-borne diseases. Finding a Lyme-literate medical doctor (LLMD)—or a physician who is familiar with the vast range of symptoms that may indicate infection at various stages of the disease, as well as potential coinfections and other complexities—can help ensure that you get the right treatment, right away.”

IGeneX Inc. on How to Find Doctors Who Can Help with Your Tick-Borne Disease

Why does IGeneX Inc. want to help you find a Lyme-literate doctor? Maybe because IGeneX Inc. sells the tests that many Lyme-literate doctors use to diagnose Lyme disease and chronic Lyme disease! Tests that most other doctors don’t recommend doing.

“The controversy is a nice model for many similar controversies: the science doesn’t support the existence of the disease, but a dedicated group of activists, including some scientists and physicians, feel their extensive experiences more than make up for lack of data. What some of us have problems with is not only the lack of data, but also the willingness of people who believe in this to go about trying to prove it in unconventional ways, for example, relying on lab tests that are not validated.”

Lyme disease—who is credible?

Still, not everyone knows about Lyme disease.

And if you don’t mention a history of a tick bite, didn’t notice a tick bite (Lyme ticks are very small), or don’t have the classic erythema migrans rash, then diagnosis might be delayed.

Tips from Lyme Disease Country

So what should you know to be literate about Lyme disease and be prepared if a tick ever bites your child?

  • you can prevent Lyme disease by avoiding tick bites and removing ticks as quickly as possible after they bite you, which is why it is important to do use insect repellent and do regular tick checks after spending time outdoors, especially if you were in wooded, overgrown areas or places with tall grass or unmarked trails.
  • just because you were bitten by a blacklegged tick, it doesn’t mean that you will develop Lyme disease. In general, only 2% of tick bites result in Lyme disease.
  • in most cases, ticks don’t need to be tested for Lyme disease, after all, even if the tick tested positive, it doesn’t mean that it transmitted the Lyme bacteria during a bite.
  • Lyme disease isn’t the only tick-borne disease that we are concerned about, so do tick checks even if you aren’t in a Lyme endemic area.
  • except in very specific cases in high risk areas, people shouldn’t usually be treated with antibiotics after a tick bite, just in case they might develop symptoms of Lyme disease
  • according to the American Lyme Disease Foundation, eight states, including Arizona, Colorado, Idaho, Montana, Nevada, North Dakota, Utah, and Wyoming, don’t have the Ixodes ticks that transmit Lyme disease

And know that in addition to your pediatrician, a pediatric rheumatologist or pediatric infectious disease specialist can help you if you think your child has Lyme disease. Unfortunately, late symptoms of untreated Lyme disease can be serious. That makes early diagnosis and the return of a Lyme disease vaccine important.

What about Lyme-literate doctors who say that they specialize in caring for patients with Lyme disease? Understand that the term “Lyme-literate” is simply a dog whistle for alternative medicine providers and websites who are likely to offer non-evidence based care.

More on Lyme Disease and Lyme-Literate Doctors

What to Do If a Tick Bites Your Child

Lyme disease.

That’s usually what comes to mind when people find a tick on their child or if they simply think about tick-borne diseases.

It is important to know that there are many other diseases that can be caused by many different types of ticks though, from anaplasmosis to tularemia. And since these ticks and the diseases they transmit are fairly regional, it is easy to be unfamiliar with them if you don’t live in their specific habitats.

That can especially be a problem if, for example, you are from Hawaii, where tick-borne diseases aren’t a big issue, and you travel for a camping trip to Oklahoma and your child is bitten by a tick. Will you or your doctor know what to do if your child develops symptoms of Rocky Mountain spotted fever?

How To Remove a Tick

Fortunately, if you find a tick on your child, you can decrease their chance of getting sick if you remove it quickly. That makes doing daily full body tick checks important.

 

Use tweezers to remove a tick, grabbing it close to the skin, and pulling it upward with steady, even pressure.
Use tweezers to remove a tick, grabbing it close to the skin, and pulling it upward with steady, even pressure. A special tick-removal spoon can make it even easier!

How quickly?

At least 36 hours.

“Parents should check their children for ticks under the arms, in and around the ears, inside the belly button, behind the knees, between the legs, around the waist, and especially in their hair.”

CDC on Preventing Tick Bites

After removing the tick, wash the bite area and your hands with soap and water and observe your child over the next few weeks for symptoms of a tick-borne disease.

Symptoms of a Tick Bite

Although some of the symptoms of tick-borne diseases are specific to the tick that bit your child, some other symptoms are common to all of them, including:

  • fever
  • headache
  • fatigue
  • muscle aches and joint pains
  • skin rashes
  • chills

Like spider bites, tick bites are usually painless. That often leads to a delay in actually figuring out that a tick has bitten your child, which makes it important to do frequent tick checks if they are doing anything that could expose them to ticks.

Many people are also surprised at how many different diseases can be transmitted by ticks, including:

  • Anaplasmosis – transmitted by the black-legged tick (northeast and upper midwestern United States) and the western black-legged tick (Northern California). May not cause a rash.
  • Babesiosis – transmitted by the black-legged tick (northeast and upper midwestern United States). Can cause severe hemolytic anemia.
  • Colorado Tick Fever – a viral infection that is transmitted by the Rocky Mountain wood tick (western United States, especially Colorado, Utah, Montana, and Wyoming). Can cause meningoencephalitis.
  • Ehrilichiosis – transmitted by the lone star tick in southcentral and eastern US.
  • Lyme disease – transmitted by the blacklegged in the northeastern U.S. and upper midwestern U.S. and the western blacklegged tick along the Pacific coast. Erythema migrans rash or Bull’s eye rash.
  • Powassan disease – a viral infection that is transmitted by the black-legged tick (northeastern United States and the Great Lakes region). Can cause biphasic illness, with children appearing to get better and then the symptoms reappearing again.
  • Rocky Mountain spotted fever – transmitted by the American dog tick, Rocky Mountain wood tick, and the brown dog tick in the U.S. Causing a classic petechial rash on the wrists, forearms, and ankles, which can then spread to the trunk.
  • Rickettsia parkeri Rickettsiosis – transmitted by the Gulf Coast tick in the eastern and southern United States.
  • STARI (Southern Tick-Associated Rash Illness) – “transmitted” by the lone star tick (central Texas and Oklahoma eastward to the the whole Atlantic coast). Children have an expanding “bull’s eye” lesion at the tick bite, like Lyme disease, but the cause is unknown.
  • Tickborne relapsing fever (TBRF) – spread by multiple soft ticks in the western United States which live in rodent infested cabins and can cause relapsing fever – 3 day episodes of fever, in between 7 days stretches in which a child might be fever free, over 3 to 4 weeks.
  • Tularemia – transmitted by dog ticks, wood ticks, and lone star ticks or by handling a sick animal, including wild rabbits, muskrats, prairie dogs, and domestic cats. Can cause an ulcer at the site of infection.
  • 364D Rickettsiosis – transmitted by the Pacific Coast tick in Northern California dn along the Pacific Coast.

And although it can be helpful to know about all of the different tick-borne diseases and their symptoms, you should basically just know to seek medical attention if your child gets sick in the few weeks following a tick bite.

What to Know About Ticks and Tick Bites

Of course, it would be even better to reduce your child’s risk of getting a tick-borne disease by avoiding ticks in first place, including limiting his exposure to grassy and wooden areas, wearing protective clothing, using insect repellent, treating your dogs for ticks, taking a shower within two hours of possibly being exposed to ticks, and doing frequent tick checks.

In addition to avoiding ticks, it is important to know that:

  • The Vermont Department of Health advises that the best way to prevent tickborne diseases is to prevent tick bites.
    The Vermont Department of Health advises that the best way to prevent tickborne diseases is to prevent tick bites.

    Tick activity is seasonal, with adult ticks most active in spring and fall, and the smaller nymphal ticks more active in late spring and summer.

  • Tick bites that lead to tick-borne diseases are often not noticed because they are usually painless and are often caused by nymphs, the immature, smaller forms of a tick. So while you might be thinking about a large, adult tick when you are asked about a recent tick bite, a nymph is tiny (about 2mm long) and might even be missed.
  • Testing (on your child), including antibody tests, can be done to confirm a diagnosis of most tick-borne diseases, but keep in mind that testing can be negative early on. You also shouldn’t wait for results before starting treatment in a child with a suspected tick-borne disease. Testing is usually done with either indirect immunofluorescence antibody (IFA) assay or enzyme immunoassay (EIA) tests.
  • It is usually not recommended that you have a tick that has bitten your child be tested for tick-borne diseases. Even if the tick was positive for something, it wouldn’t mean that it transmitted the disease to your child.
  • Experts don’t usually recommend that people be treated for tick-borne diseases after a tick bite unless they show symptoms. The only exception might be if the tick was on for more than 36 hours and you were in an area with a high risk for Lyme disease.
  • Although doxycycline, one of the antibiotics often used to treat tick-borne diseases, is often restricted to children who are at least 8 years old because of the risk of side effects, it should still be used if your younger child has Rocky Mountain spotted fever, ehrlichiosis, or anaplasmosis.

You should also know that most old wives tales about ticks and tick bites really aren’t true. You should not try to burn a tick that is biting your child with a match, paint it with nail polish, or smother it with vaseline, etc. Just remove it with tweezers and throw it away in a sealed bag or by flushing it down the toilet.

What to Do If a Tick Bites Your Child

Don’t panic if a tick bites your child. You have up to 36 hours to remove it, before it is can likely transmit any diseases to your child, like Lyme disease or Rocky mountain spotted fever.

More About Ticks and Tick Bites