The latest study from MyLymeData, LymeDisease.org’s patient registry, found significant disparities in how men and women experience Lyme disease.

Analyzing data from 2170 MyLymeData participants, researchers found that women encountered lengthier diagnostic delays, grappled with more severe symptoms, and suffered greater functional impairment compared to men.

These findings have recently been published in the International Journal of General Medicine, in an article entitled Does Biological Sex Matter in Lyme Disease? The Need for Sex-Disaggregated Data in Persistent Illness.

(Disaggregated means that you separate out the data from male and female patients, so that you can look for trends in each group.)

Key findings include:

• Women had higher rates of co-infections.
• Women had longer diagnostic delays, saw more doctors before receiving a diagnosis, and were diagnosed at a later stage of illness than male patients. They were also more likely to be misdiagnosed in general, and were more likely to be misdiagnosed with chronic fatigue syndrome, fibromyalgia, or a psychiatric disorder in particular (or any combination of these conditions).
• Women had more severe symptoms and were more likely than men to report being disabled, spending more days in bed, and requiring special equipment as a result of their chronic Lyme. Self-reported health status was equally impaired for men and women.
• There was no statistically significant difference between men and women in treatment response and side effects from antibiotic treatment, with the majority of both men and women reporting some improvement in symptoms since the beginning of their antibiotic treatment.

What are we to make of this?

One thought seems obvious. If it takes you longer to get diagnosed and treated, it stands to reason that you could be sicker than someone who started the process sooner. Furthermore, it has been shown that delayed diagnosis increases the risk of developing persistent Lyme disease.

This begs the question: why does it take women so much longer to get diagnosed? Is it because doctors often give less credence to women’s complaints about their health? As an article in the New York Times states:

Women are also more likely to be told their pain is “psychosomatic,” or influenced by emotional distress. And in a survey of more than 2,400 women with chronic pain, 83 percent said they felt they had experienced gender discrimination from their health care providers.

Another question involves the hormonal differences between women and men. The authors of the MyLymeData article point out that in other diseases, it’s known that males and females vary in their biological response to infection. They theorize, “In Lyme disease, women may produce more inflammatory and inhibitory cytokines than men in response to Borrelia infection, increasing the risk of PLD/CLD [persistent Lyme disease/chronic Lyme disease].”

That’s a topic that deserves further investigation.

Past studies of Lyme disease patients made no effort to disaggregate data from males and females. By ignoring sex-based differences, important lines of inquiry have been overlooked.

LymeDisease.org started MyLymeData in 2015, to track the real-world experiences of people with Lyme disease. One purpose for doing this was to help point researchers in promising directions. This latest study certainly does that.

As the authors conclude, “The extent to which biological factors also contribute to the greater prevalence of PLD/CLD in women should be a central focus of future research.”

Read the study here.

Learn how you can participate in MyLymeData.

Click below to watch Dr. Raphael Stricker’s video presentation about the study:

TOUCHED BY LYME is written by Dorothy Kupcha Leland, President of LymeDisease.org. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at dleland@lymedisease.org.