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Do You Have Chronic Lyme Disease?

Why do so many doctors doubt that chronic Lyme disease exists? As many as 10 to 20 percent of patients suffer long-term symptoms.

Lyme disease is caused by a pathogen called Borrelia burgdorferi that is transmitted through tick bites. Prompt treatment with antibiotics often leads to a complete cure. Some people, however, develop lingering symptoms. Is there such a thing as chronic Lyme disease? Many health professionals have long been doubtful.

Infectious disease experts use the term Post-Treatment Lyme Disease Syndrome or PTLDS to describe symptoms such as persistent fatigue, joint and muscle aches, headaches, poor sleep and brain fog.

The National Institute of Allergy and Infectious Diseases (NIAID) maintains that:

“…a short course of oral antibiotics such as doxycycline or amoxicillin is curative in the majority of the [Lyme] cases. In more complicated cases, Lyme disease can usually be successfully treated with three to four weeks of antibiotic therapy.”

If, after a month or two, people continue to complain of symptoms from chronic Lyme disease, doctors may dismiss them as having psychosomatic problems. That’s what happened to this reader of The People’s Pharmacy.

A Patient’s Journey with Chronic Lyme Disease:

Q. I was bitten by a tick in July of 2007. Though that led to infection with Lyme disease, the doctor misdiagnosed me and prescribed prednisone. After three months, I was much worse.

The next doctor I saw made the correct diagnosis and treated me with 30 days of doxycycline. My doctor said I the CDC-recommended dose of antibiotics he gave me cured me. However, even after the antibiotic course, I still tested positive on Western blot.

Over the next decade, I struggled with worsening symptoms. Two more doctors said I was cured and insisted the fatigue, pain and other problems were all in my head.

Eventually an infectious disease doctor agreed that I had chronic Lyme disease. I was treated for a year with doxycycline and azithromycin (doxy for the active form of the bacteria and azithromycin for the dormant form). I have been mostly pain-free since then.

Have there been any changes in the way Lyme disease is diagnosed and treated so others won’t have to suffer as I did?

A. Lyme disease remains one of the most controversial and challenging infections that patients experience. For years the Centers for Disease Control and Prevention told doctors and patients that there were roughly 30,000 cases of Lyme disease each year. In 2015, though, the CDC admitted that estimate was way off. Actually, as many as 300,000 Americans contract this tick-borne disease annually.

Early symptoms of Lyme disease include fever, chills, headache and sometimes rash. Typically, this looks like a bulls eye. However, people don’t always have a rash. They may not even realize they have been bitten by a tick. Patients commonly experience fatigue and pain in muscles and joints.

Early Treatment Is Crucial!

Treatment with an antibiotic is most effective in the early stages of Lyme infection. But here’s the rub. Standard diagnostic tests for Lyme are not very accurate during the first several weeks.

If a doctor waits for positive test results, the optimal treatment opportunity may be lost. Some doctors in areas where Lyme disease is common begin antibiotic treatment even before the test results are available.

Is Chronic Lyme Disease Real?

For years, infectious disease experts denied that patients could suffer long-term complications of borreliosis. That’s partly because they didn’t have a blood test that linked symptoms with biological reactions. Now researchers have found a link between elevated levels of interferon alpha in the blood and persistent neurological symptoms of Lyme (Emerging Infectious Diseases, June, 2023). The researchers note that increased inflammation, as indicated by increased interferon alpha, is apparent early in the infection.

They remark:

“Thus, a range of post-Lyme complications have been linked to dysregulated host immunity.”

Physicians have been baffled by people who continue to suffer arthritis, brain fog, fatigue and other symptoms long after they have completed treatment. This confusion may be caused in part by the insistence of experts at the National Institute of Allergy and Infectious Diseases that:

“Lyme disease can usually be successfully treated with three to four weeks of antibiotic therapy.”

A recent estimate contradicts the idea that chronic lyme disease (aka post-treatment Lyme disease syndrome) is rare. Experts from Lyme country recently wrote that as many as two million people could suffer from PTLDS by 2020 (BMC Public Health, April 24, 2019).

The authors note:

“Although antibiotic therapy cures most LD [Lyme disease] patients, a significant proportion of patients continue to suffer persisting symptoms that can derail normal life. These include chronic pain, neurological sequelae such as cognitive dysfunction, refractory arthritis and debilitating fatigue. Whether the persistence of symptoms is attributable to LD is the subject of impassioned debate.”

Animal studies have revealed evidence of the spirochete that causes Lyme disease up to a year after antibiotic treatment (American Journal of Pathology, March, 2018). These authors acknowledge that 10% to 20% of patients treated according to national guidelines will end up with post-treatment Lyme disease syndrome.

If there are 300,000 cases of Lyme disease each year, that means 30,000 to 60,000 people could end up with chronic Lyme disease. We do not consider that rare!

The authors of this article conclude:

“These findings support the notion that chronic Lyme disease symptoms can be attributable to residual inflammation in and around tissues that harbor a low burden of persistent host-adapted spirochetes and/or residual antigen.”

In other words, animal research supports the idea of chronic Lyme disease even after antibiotic treatment.

We Need Better Lyme Disease Tests!

New diagnostic approaches will use genomic techniques to identify the infection early when it can be treated most successfully. We also need better tests that can identify latent disease. It is time for health professionals to acknowledge that chronic Lyme disease is not an imaginary syndrome. Perhaps the research on interferon alpha noted above will help.

You can learn first hand what it’s like to be misdiagnosed with Lyme disease. Neil Spector, MD, is a distinguished researcher and medical oncologist. When he came down with troubling symptoms, the doctors he consulted told him he was suffering from stress. Lyme disease destroyed his heart. You can hear our interview with Dr. Spector at this link:

Show 996: Mystery and Lyme Disease Misdiagnosis

You can listen by clicking on the green arrow under Dr. Spector’s photograph or you can download the free mp3 file on your computer or mobile device.

If you would like to learn more about Lyme disease in general, you will want to listen to another interview with Dr. Spector and Dr. Bill Rawls. Both physicians have personal experience with Lyme disease and offer practical tips for people who are suffering.

Show 1081: What Do You Need to Know About Lyme Disease?

Share your own experience with Lyme disease in the comment section.

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About the Author
Joe Graedon is a pharmacologist who has dedicated his career to making drug information understandable to consumers. His best-selling book, The People’s Pharmacy, was published in 1976 and led to a syndicated newspaper column, syndicated public radio show and web site. In 2006, Long Island University awarded him an honorary doctorate as “one of the country's leading drug experts for the consumer.”.
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