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Lyme Disease Symptoms in Women – Is Chronic Lyme the New Hysteria?

lyme disease symptoms in women is it cfs

Women may have more clinical symptoms of Lyme but lower IgG levels and seronegative ELISA results.

Consider for a moment the similarity between the often vague, transient, erratic and unexplained symptoms of Lyme disease and hysteria, as diagnosed in women throughout the Victorian era and beyond.

Could Chronic Lyme disease be a modern-day equivalent catch-all diagnosis for psychosomatic, neurocognitive and psychological problems without another clear explanation? Are women diagnosed with Lyme disease in the absence of conclusive evidence being done a disservice by the medical establishment? Evidence is mounting that men and women experience Lyme disease differently, have varying responses to Lyme disease tests and may be at risk of having treatable conditions misdiagnosed simply because of their sex.

Women Have More Clinical Symptoms of Lyme Disease

According to a presentation earlier this year at the International Conference on Emerging Infectious Diseases, women with Lyme disease report more clinical symptoms than do men with the infection. The prospective cohort study involved 77 patients, forty of whom were men, and examined the variety and incidence of symptoms reported. Significantly more women reported joint pain, muscle pain, headache, back pain, heart palpitations, nausea and vomiting, anxiety, numbness and tingling and vision disturbances. One hypothesis for this is that the men and women were experiencing a different immunological response to infection with Borrelia burgdorferi, although other research papers suggest alternative theories for these variations in Lyme disease symptoms in men and women.

Do Women Test Negative for Lyme Disease More Often?

The patients in this study all had early, untreated erythema migrans and clinically confirmed Lyme disease. Each was tested at the first visit using the criteria laid out by the Centers for Disease Control (CDC) and around 60% of both women and men were seronegative for Lyme disease on ELISA and Western Blot. Immediately after treatment the tests showed significant differences, however, with 70% of women who had initially tested negative now testing negative but only 35% of the initially seronegative men remaining so.

Should Sex-Specific Lyme Disease Tests be Offered to Reflect Varying Immunological Responses?

There were also differences in the concentration of CD4+CCR5+ T-cells in the women compared to the men at the beginning of the study. Lauren A. Crowder, MPH., of the Lyme Disease Research Foundation said that the findings “suggest to us that there may be a difference between how men and women respond to infection with Lyme disease.” All patients were treated with a three-week course of doxycyline and followed up for two years with a total of six visits. A physical examination, clinically reported symptoms, surveys and laboratory tests were all carried out for each visit.

Misdiagnosis or Immune Response in Women with Lyme Disease

An earlier paper published in the Journal of Womens Health in 2009 and written by well known Lyme disease experts Wormser and Shapiro cited a different reason for this apparent disparity in symptoms between men and women with Lyme disease. The hypothesis presented in this case was that disease and conditions that have a higher preponderance in women may be being misdiagnosed as chronic Lyme disease. Such conditions would include fibromyalgia, chronic fatigue syndrome and depression. Included in the study were 490 patients with chronic Lyme disease, 184 patients with post-Lyme disease syndrome and adult cases of Lyme disease reported to the CDC between 2003 and 2005 (amounting to 43,282). Patients with chronic Lyme disease were almost two and a half times more likely to be female than those diagnosed with Lyme disease (Odds ratio of 2.42) or post-Lyme disease syndrome (OR 2.32).

Chronic Lyme Disease – A Dangerous Cop-Out

Although many patients continue to argue for recognition of the existence of chronic Lyme disease there may be those unfortunate few who are experiencing chronic suffering from an untreated and misdiagnosed illness. Just as patients with fibromyalgia often find that new symptoms are simply dismissed as a result of their existing diagnosis, those with a history of Lyme disease may fail to access medical assistance with new symptoms that appear related but are actually treatable and not part of the legacy of infection with Borrelia.

Biofilms and Recurrent Infection

Post-Lyme disease syndrome is classified as prolonged subjective symptoms after antibiotic treatment and resolution of Borrelia infection. Of course, given the recent conflicting research suggesting that relapses are due to reinfection and that Lyme disease bacteria can form biofilms capable of persisting undetected and unaffected by antibiotics, it is easy to see how patients and physicians remain perplexed over the true cause of symptoms. Chronic Lyme disease remains unrecognized by official health authorities as a vague term that describes ongoing subjective symptoms in the absence of a clinical diagnosis of acute infection with Borrelia.

Treatable Pelvic Pain Condition vs. Lyme Disease and CFS

Women diagnosed with Lyme disease and subsequent chronic fatigue syndrome may, according to another study, actually be suffering from another condition: sympathetic neural hyperalgesia edema syndrome. Check and Cohen (2011) reported that chronic fatigue syndrome may be mistakenly attributed to infection with Lyme disease but that this common cause of pelvic pain in women may present simply as CFS without pelvic pain.

Differential Diagnosis for Lyme Disease

Only one patient was studied for this paper, a woman who had symptoms of chronic fatigue and was reactive for Borrelia burgdorferi but whose symptoms did not improve after three months of doxycycline treatment. The woman underwent a water load test, which she failed, and was subsequently treated successfully with dextroamphetamine sulfate. Check and Cohen conclude that women who develop chronic fatigue syndrome after Lyme disease but who remain symptomatic despite treatment for the infection should be considered as patients with this treatable sympathetic nervous system issue.

women with lyme disease chronic fatigue fibromyalgia misdiagnosis

Stress, CFS, fibromyalgia, or Lyme disease? Are women being failed by the current system?

Self-Misdiagnosis More Common for Women Who Think They Have Lyme Disease

Another study courtesy of the LDRF in Maryland looked at sex differences in the clinical and serological presentation of early stage Lyme disease. Schwarzwalder, et al (2010), set out to see if similar differences between male and female patients occurred in Lyme disease as those in other infectious diseases by studying 125 patients with a current or past episode of confirmed early Lyme disease. No significant differences in clinical presentation between the two sexes studied were observed although self-misdiagnosis rates were higher for women (18% vs 10% in men).

Sixty-two of the patients underwent serological testing using ELISA and 50% of the men had a positive two-tier result, compared to 32% of women. Adding weight to the suggestion of a variability in immune response between men and women with Lyme disease, this study found that of those who did tests positive median ELISA values and the median number of immunoglobulin G (IgG) bands were significantly higher in the male patients.

Further Research Needed for Women with Lyme Disease

Given such findings it may be that women with Lyme disease symptoms are more likely to be determined seronegative than men with similar symptoms, resulting in a disparity in diagnosis and treatment. The danger here is that women seeking medical attention for the often vague and disparate symptoms of Lyme disease may be more likely to be dismissed or misdiagnosed with an illness such as fibromyalgia or CFS and given inappropriate and unhelpful treatment. Larger studies are clearly needed to improve understanding of these apparent differences between Lyme disease in women and Lyme disease in men, before chronic Lyme disease becomes the modern day equivalent of the Victorian notion of hysteria.


Wormser, G.P., Shapiro, E.D., Implications of Gender in Chronic Lyme Disease,
J Womens Health (Larchmt). 2009 June; 18(6): 831–834.
doi: 10.1089/jwh.2008.1193

Check JH, Cohen R., Sympathetic neural hyperalgesia edema syndrome, a frequent cause of pelvic pain in women, mistaken for Lyme disease with chronic fatigue.Clin Exp Obstet Gynecol. 2011;38(4):412-3.

Schwarzwalder A, Schneider MF, Lydecker A, Aucott JN., Sex differences in the clinical and serologic presentation of early Lyme disease: Results from a retrospective review. Gend Med. 2010 Aug;7(4):320-9.

John N. Aucott, Alison W. Rebman, Lauren A. Crowder and Kathleen B. Kortte, Post-treatment Lyme disease syndrome symptomatology and the impact on life functioning: is there something here?, QUALITY OF LIFE RESEARCH
2012, DOI: 10.1007/s11136-012-0126-6

{ 2 comments… add one }
  • Liese February 19, 2013, 4:53 pm

    Fibromyalgia is not a diagnosis it is a syndrome. Small studies have shown 70-80% of people with “fibromyalgia” actually have a vector borne infection. But Big Pharma wants people on symptom relieving medication for the rest of their lives instead of treating the root cause. Lyme disease is the fastest growing infectious disease in the US. It is not just an illness but an immune-compromising complex that shuts off the immune system by way of OspA. Please stop the dissemination of misinformation on the fact of Lyme Disease. When it all comes out the Lyme Disease cover up will be worse than the HIV cover-up of the 80s.

  • nancy jones August 3, 2013, 8:51 am

    I really really want to thank you for your closing statement , “When it comes out the Lyme Disease cover up will be worse than the HIV coverup of the ’80s.” Finally, some one haswhatever it took for this to be SPOKEN OUTLOUD!!!!! According to KET reports a year ago Drs. were being disbarred for saying “Chronic Lyme” much less treating for the long term. Is this plight of truthful Drs. now a thing of the past?

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