The truth about Lyme disease

woman hiking in the woods in the fall

By Dr. Sharon Stills, NMD

The controversy over Lyme disease keeps growing. More and more people are diagnosed — over 300,000 new patients in 2018 — but the arguments over its diagnosis and treatment grow too.

By now, all of us know friends or family suffering from chronic or advanced Lyme. And often they are very unhappy with their conventional treatment — and lack of progress. The disease can be debilitating.

So here’s what you need to know about Lyme — its symptoms, causes, diagnosis and treatment — including why conventional medicine often gives disappointing results.

How do you know if you have Lyme disease?

The first thing many conventional practitioners recommend — a blood test for Lyme disease — is controversial. That’s because blood tests for Lyme disease don’t actually look for the bacteria that causes Lyme disease, Borrelia burgdorferi. Instead, they look for antibodies to the bacteria. There are problems with this:

  • If you’re tested right away, you may not yet have developed enough antibodies for the test to detect. So the test yields a false negative — you’re told you don’t have Lyme, when in fact you do.
  • Many people who had a Lyme infection in the past carry antibodies for years afterward. Yet they have no active infection. So the test yields a false positive — you’re told you have Lyme, but you actually don’t, at least at the present time.

Bottom line: A positive “Lyme titer” tells you only that you were exposed to the disease at some point in the past. But it doesn’t tell you if that infection is new or ongoing.

Diagnosis with a tick bite and Lyme disease symptoms

Some practitioners, knowing that testing isn’t accurate, will diagnose Lyme disease if you have a tick bite and symptoms consistent with Lyme disease. Unfortunately, there are problems with this approach as well:

  • The classic “bulls-eye rash” that most people associate with Lyme disease only occurs in 1 in 5 people. And 30% have no rash at all.
  • The initial infection may not produce serious (or any) symptoms early on. But a wide range of often debilitating symptoms may develop weeks, months or even years after the tick bite.
  • Even when systemic symptoms develop quickly, often they’re so vague and nonspecific that they may get blamed on something else. Especially if no rash appeared after the initial bite.
  • The ticks that carry Lyme disease also carry other bacteria that cause diseases with similar symptoms. Some people get multiple infections from the same tick bite.

As you can see, diagnosing Lyme can be very difficult. But you need to be aware of all the questions and issues so you can get the best care possible.

How is Lyme disease treated?

If you’ve had a tick bite and have obvious symptoms, like a rash, you’ll likely be given antibiotics for up to 21 days. (Some practitioners recommend 42 days.) But there are important things to consider when it comes to antibiotic treatment:

1. A number of studies show that antibiotic therapy successfully treats localized (early) Lyme if initiated within 2 to 3 weeks after the initial infection. But for those with disseminated (late) Lyme disease, who don’t develop symptoms for weeks to months later — including the 30% who don’t have a rash — antibiotics often don’t work as well.

2. Three weeks of antibiotics has a very serious impact on the body, particularly the gut flora. And there’s no guarantee it will cure the infection. Studies have shown that anywhere from 16% to 48% — almost half! — of patients experience continued or recurrent Lyme symptoms after finishing their treatment.

3. There’s also the problem of coinfections. For example, black-legged ticks also carry other infectious bacteria, some of which don’t respond as well to amoxicillin. So even if the Lyme is cured, the patient might still have symptoms related to anaplasmosis or babesiosis nonetheless. And think she still has Lyme!

And then there’s chronic Lyme disease…

doctor talking with her patient

Chronic Lyme: the disease that “doesn’t exist”

Until recently, the Centers for Disease Control and Prevention (CDC) flatly dismissed the idea of “chronic Lyme disease.” That’s despite the many patients reporting debilitating long-term symptoms after being treated for Lyme disease.

Fortunately, recent studies have verified the existence of post-treatment Lyme disease syndrome. In fact, the CDC now includes information about it on their website.

But many practitioners haven’t gotten the word that there really is a chronic condition related to Lyme infection. Patients with ongoing symptoms of fatigue, joint pain or fuzzy thinking may find themselves facing a skeptical healthcare provider who doesn’t recognize the symptoms’ relationship to Lyme disease.

We still don’t know a lot about Lyme disease or why post-treatment Lyme syndrome occurs. And there is no consensus at all about how to treat it. Retreatment with IV antibiotics isn’t particularly effective and may be harmful.

This leaves many people with chronic symptoms related to Lyme disease in a difficult place. There’s no question that they’re suffering from debilitating symptoms. And they deserve a practitioner who takes their concerns seriously. So do you! If your doctor isn’t open to your questions, I encourage you to find someone who is.

For more information about fatigue, a common symptom of Lyme disease, see our essential reading on fatigue and insomnia.
References

Aucott JN. Posttreatment Lyme disease syndrome. Infect Dis Clin North Am. 2015 Jun;29(2):309-23. doi: 10.1016/j.idc.2015.02.012.

Centers for Disease Control and Prevention. Post-Treatment Lyme Disease Syndrome. Available at https://www.cdc.gov/lyme/postlds/index.html (posted December 1, 2017; accessed July 31, 2018).

Halperin JJ. Chronic Lyme disease: misconceptions and challenges for patient management. Infect Drug Resist. 2015;8:119-128. doi: 10.2147/IDR.S66739.

Maloney, E. L. Controversies in persistent (chronic) Lyme disease. J Infusion Nurs. 2016;39(6): 369–375. DOI: 10.1097/NAN.0000000000000195

Middelveen MJ, Sapi E, Burke J, Filush KR, Franco A, Fesler MC, Stricker RB. Persistent Borrelia Infection in Patients with Ongoing Symptoms of Lyme Disease. Healthcare (Basel). 2018 Apr 14;6(2). pii: E33. doi: 10.3390/healthcare6020033.

National Institute of Allergy and Infectious Diseases. Chronic Lyme Disease. Available at https://www.niaid.nih.gov/diseases-conditions/chronic-lyme-disease (posted September 3, 2015; accessed July 31, 2018).

Partnership for Tick-Borne Diseases Education. Tick-borne diseases overview. Available at https://www.partnershipfortick-bornediseaseseducation.org/tick-borne-diseases-overview/ (accessed July 31, 2018).