1. Health

Diagnosis, Treatment, Anger and Controversy - Chronic Lyme Disease

By

Updated May 06, 2014

Lyme's distinctive bulls-eye rash may not always appear in patients with Lyme Disease.

Lyme's distinctive bulls-eye rash may not always appear in patients with Lyme Disease.

Wikimedia Commons

Lyme Disease has been diagnosed long enough, and the infectious bacteria that causes it is easy enough to identify, that most patients with early Lyme Disease are able to find a doctor who can accurately diagnose it. Even those patients who are originally told by a doctor that their symptoms are all in their head are often able to find another doctor to help them get the accurate diagnosis.

But in some cases, patients find great difficulty in getting a Lyme Disease diagnosis. And that's because there is controversy that surrounds such a diagnosis, especially for patients who don't suffer symptoms until long after they were possibly bitten by a tick.

Early Diagnosis vs Later Diagnosis

If a patient sees a doctor within a few weeks after being bitten by a tick that infected him with the Borrelia bacteria, then he may not have a problem getting a diagnosis. The well-known target-like bullseye rash (see above) may be the givewaway, although it's possible to have Lyme Disease but never see the rash. And although not entirely accurate, some tests for Lyme Disease do exist, and sometimes they do work correctly.

But Lyme Disease isn't always easy to identify, and not all patients exhibit symptoms early after a tick bite. In fact, it's possible their symptoms won't show up for months or years after being infected.

Or, some patients are treated early with antibiotics, but those antibiotics don't completely destroy the Lyme Borrelia bacteria, or other symptoms occur even when no sign is left in their bodies of any lingering infection.

So What Is the Controversy Over Chronic Lyme Disease?

Huge controversy has developed over the diagnosis of later-stages of Lyme Disease. Although there is little controversy over whether it exists; instead, the controversy is over what it is called, and how it is treated.

The CDC calls this later stage diagnosis Late Disseminated Lyme, and Post-treatment Lyme Disease Syndrome (PTLDS). They don't question whether it exists. Information about both is found on the CDC website.

The controversy, then, is associated with the use of the term "chronic" and its ensuing use of antibiotics to treat it in the later states.

Using the term "chronic" suggests that an infection and inflammation are still present. But that may not be true in the later stages of Lyme Disease. The controversy is less about whether patients are still suffering physical symptoms, and more about the idea that if it is labeled "chronic" they will be treated with antibiotics - a treatment that may not only be ill-advised, but could create bigger problems for those patients.

In fact, some of the most well-known and well-respected medical organizations in the United States have taken a stand against calling the later stages Chronic Lyme, including the Infectious Diseases Society of America (IDSA), the American Academy of Neurology, the Centers for Disease Control (CDC) and the National Institutes of Health (NIH).

Some smaller groups, and many patients, believe that Chronic Lyme, using that name, exists should be treated with long-term antibiotics. Members, including providers, of CALDA (California Lyme Disease Association, now called LymeDisease.org), The Lyme Disease Association, the International Lyme and Associated Diseases Society, and others have lobbied medical organizations and state governments for recognition of their ideas and implementation of their processes in helping to diagnose Chronic Lyme Disease and to force medical reimbursements by health insurers.

Chronic Lyme diagnoses have even been political, the target of the Connecticut Attorney General who had it investigated in 2006. Still today, most doctors deny the existence of Chronic Lyme, and most insurers deny payment for diagnosing or treating it.

There are both CPT codes and ICD codes for diagnosis and treatment of Lyme Disease, but their use for the controversial later-stage diagnosis, when it results in long term use of antibiotics, is limited.

As a result of the controversy, and because so many well-respected groups of doctors have denied the concept of "Chronic Lyme," Lyme Disease in its late stages won't be proffered as a possible diagnosis by many doctors. In fact, some doctors won't diagnosis the later stages of Lyme because they are afraid of being ostracized by their peers.

Further, those professionals who buy-in to the "Chronic" label treat the later stages of Lyme Disease with long term antibiotics - a treatment that is controversial for any infection, not just Lyme Disease. Long term antibiotics can wreak havoc with our bodies and create more harm in the long run than their possible good.

Pursuing the Diagnosis

If you believe you do have late-stage, PTLDS or Chronic Lyme Disease, the only way to get an accurate diagnosis is to find a doctor who will be willing to work with you to determine (or rule out) that diagnosis, and then treat you for it. Many doctors recognize the late-stages of Lyme Disease and will work with you to treat your symptoms, even if they won't call it Chronic Lyme.

If you have no evidence of an infection (no fever, inflammation or other evidence), then you may find a different diagnosis, such as dysautonomia, is a better name for your ailment.

If you are running a fever, or have a known infection, then antibiotics might be helpful. You'll need a doctor who is willing to treat late-stage Lyme with antibiotics with evidence of an infection.

Such doctors do exist, but may be hard to find because they will be ostracized, as mentioned above. Search out Chronic Lyme support groups online and ask for recommendations. An entire "underground" exists to help patients who believe they have Chronic Lyme.

But Beware....

Remember that when we are sick, and can't get answers, we get desperate, too. The symptoms of later stage Lyme are the symptoms of many other diseases and conditions, too. Some experts, including Dr. Rich Fogoros, the About.com Guide to Heart Disease, believe that later stage Lyme Disease that shows no evidence of infection may actually be a dysautonomic diagnosis instead.

You may decide you have Chronic Lyme, and you may even find a doctor who agrees with you and treats you for it. But remember that it's impossible for that diagnosis to be definitive, even if you can get treatment for it. And if you pursue something that isn't truly the correct answer, you'll be getting in your own way of finding the correct answer.

Finally, be sure you have exhausted all possible alternative diagnoses before committing yourself to long-term antibiotic treatments which can produce their own difficult symptoms and long-term problems.

Reference:

Journal: Nature Antibiotic overuse: Stop the killing of beneficial bacteria by Martin Blaser (25 August 2011)

©2014 About.com. All rights reserved.

We comply with the HONcode standard
for trustworthy health
information: verify here.