There’s a new STI on the rise, and here’s what you need to know about Lyme Disease. Yes, Lyme Disease.
If there were a new sexually transmitted infection (STI, aka STD) on the rise — say, one that was an unexpected concern, especially to monogamous couples — when would you want to know about it?
Say, when it’s a scientifically proven possibility with mounting evidence — even if it took three to five years before it could be officially confirmed?
And when would you expect government and medical organizations such as the Centers for Disease Control and Prevention (CDC) and the Infectious Diseases Society of America (IDSA) to share this information with you? At what point does a serious potential threat warrant disclosure?
Finally, to what extent and at what point should doctors inform patients? When does it become their responsibility to do so?
It’s important to note that this potential new STD may initially be transmitted even without sexual contact. Your partner may pick it up from a tick in the woods — or be born carrying it. And while currently a “silent” epidemic, the numbers of cases have been climbing so rapidly that it won’t be kept under the radar for much longer.
Perhaps most alarming is the lack of a reliable test or conclusive go-to cure for this infection. Also, with over 300,000 new cases a year in the United States alone, a global epidemic is perhaps already underway.
In fact, leading researchers are likening it to the HIV/AIDS epidemic of the 1980s, due to similar rapidly rising infection rates, as well as a widespread lack of comprehensive testing and treatment. Many conclude that a majority of those infected do not get properly diagnosed until years after contracting it, when chronic stages have already set in.
The infection gains traction in the body in much the same way syphilis does. Also, like syphilis, the symptoms of the infection are so varied that it has been called “the great imitator”, making it perhaps the most complicated, multilayered infectious disease today. Some researchers, such as Dr. Raphael Stricker, are proposing a nationwide HIV-style “Manhattan Project” in which a uniform standard of testing is established and long-term treatment is the norm.
Commonly known as Lyme disease (aka Borrelia burgdorferi), you might assume this potential sexually transmitted infection (STI) can only afflict those bitten by a tick. Sadly, it may be time to ditch that notion. Emerging information indicates that, if you are having unprotected sex at all — even in a monogamous relationship — you’re at risk of infection.
Lyme symptoms have often been dismissed as stress or aging. They include fatigue, joint pains, muscle aches, headaches and flu-like symptoms. However, left untreated, the infection can travel to the nervous system, dwell in your tissue, and mimic chronic illnesses such as arthritis, paralysis, epilepsy or even Alzheimer’s disease. In fact, the International Lyme and Associated Diseases Society (ILADS) suggests that Lyme should be considered in diagnoses of chronic fatigue syndrome, fibromyalgia, multiple sclerosis, Lou Gehrig’s disease, Parkinson’s disease and many other multi-system illnesses.
The work of Lyme-aware healthcare providers is being hampered by faulty testing and an outdated treatment protocol. As if that wasn’t enough, these professionals are also up against a medical community and agencies that seem rather averse to examining the rise of Lyme infection, with many institutional leaders clinging to the dangerous, antiquated notion that chronic Lyme doesn’t even exist. The status quo is making it incredibly difficult for severely ill patients to receive the treatment they desperately need.
I’ve interviewed many leading Lyme literate doctors and researchers, including microbiologist Marianne Middelveen and internist Raphael Stricker. Both are involved with the most recent study investigating Lyme as an STI.
For practitioners like Dr. Christine Green on the boards of ILADS and LymeDisease.org, it is important to assume patients wish to be fully informed:
I inform my patients that it is possible Lyme disease could be sexually transmitted as the bacteria has been found in sexual fluids. But I inform them that proving transmission has not been done, possibly because it is not sexually transmitted or possibly because those studies are expensive, controversial or/and we do not have an agreed upon test that confirms active Lyme.
On the other hand, I have been shocked to learn that it’s common practice to not discuss new research findings about Lyme in order to avoid fear and recrimination. Until more large-scale peer reviewed studies are published, some doctors simply disregard the latest findings.
Unfortunately, despite mounting evidence seen by doctors in their own practices, even leading Lyme organizations are hesitant to suggest barrier methods as a precaution.
Yet all of the above offers merely a glimpse of just how difficult it is to battle Lyme disease. People living with Lyme often have to navigate medical settings in which mainstream doctors subscribe to the myth that Lyme is “hard to catch, easy to treat”.
Those affected are forced to do their own research. According to ILADS, the average Lyme patient sees five doctors within 2 years before being properly diagnosed. The CDC surveillance criteria used for diagnosis of Lyme are so insensitive that they miss more than half of patients with the tick borne illness.
After watching Under Our Skin (2009), an award winning documentary investigating Lyme as one of the most serious,controversial modern-day epidemics, I recognized that the stories of people living with Lyme need to be more widely shared. I have now heard from hundreds of people around the world living with chronic Lyme.
Most have been misdiagnosed due to false negative Elisa testing or doctors simply not considering Lyme. Many don’t recall a tick bite or telltale bullseye rash (in fact, the ILADS reports that fewer than 50% of Lyme patients recall being bitten by a tick); also, many are convinced they’ve transmitted the infection to their sexual partner or vice versa.
Joanne, who travels to Belgium from the Netherlands to see her doctor, strongly feels she transmitted the infection to her partner and expressed relief that her doctor informed her about this mode of transmission:
I am personally really glad my doctor said it is likely to be an STD. Because of this I had my boyfriend tested right away when I found out I had Lyme. He’s now also receiving treatment and is recovering much faster. With Lyme, the earlier you discover it, the better your chances of recovery, so no, I wouldn’t wait.
Barbara* has a story like so many Americans. Her infection wasn’t detected until many years after transmission:
I may have sustained a tick bite in 2008, but the circumstances were such that I brushed the incident off. I never had a bullseye rash. Lyme wasn’t identified until 2014 (after a year trying to find a diagnosis that explained my symptoms). Although Lyme crossed my mind my initial test was negative. My treatment might have been completely different if I had known and understood what IS NOT KNOWN about Lyme. I might have sought aggressive treatment for the tick bite, not ignored it. I might have been able to protect my husband who now also has Lyme.
Desi lives in Europe, and like Joanne, travels to Belgium to meet with her physician:
There are too many people with Lyme at the moment, it cannot only come from a tick bite anymore. Whole families are infected with Lyme. Including my family and my husband. I have Lyme. My husband never had a tick bite but had a positive test. He also has Lyme disease because of me. I think every practitioner has to tell their patients it’s sexually transmitted, there needs to be more information told about it.
According to Dr. Stricker and Ms. Middelveen, researchers of the 2014 study on Lyme as an STD, it was suggested over a decade ago already that Lyme disease could be sexually transmitted because the Lyme bacteria, called a spirochete, shows activity similar to the syphilis spirochete. Yet not until 2014 did research findings compellingly suggest this type of transmission may be possible in humans.
“It would certainly explain why the disease is so common,” Dr. Stricker stated in our phone interview. “This is a big game changer”, Stricker said. “It would mean we should no longer think of Lyme based on geographical high risk zones.”
Just this week, a woman diagnosed with genital ulceration was linked to Lyme disease for the first time. Based on a recently released abstract, it is now a possibility that women with Lyme are being misdiagnosed with genital herpes.
In our interview, Dr. Sticker said a more comprehensive study of sexual transmission of Lyme disease is currently underway. He is hopeful this will offer more conclusive results regarding how this epidemic is spreading at such a rapid rate.
Given all the uncertainties with Lyme, prevention is more important than ever. We know condoms will be the most effective way to protect against its spread as an STI. Drawing from what people living with Lyme have voiced, my personal opinion is that if there is any chance whatsoever that Lyme could be sexually transmitted — and the evidence is rapidly increasing — more people need to be made aware of this possibility.
Everyone has the right to choose how they protect themselves and their partners. This is not about inciting panic or stigma. It is about encouraging an up-to-date public discussion regarding Lyme. It’s about allowing people an informed choice. And finally, for safer sex educators, it’s about informing people on how they can enjoy sex and remain infection free, and for those who are infected, how to best protect their partners.
*Some names are changed, at patient request, to protect privacy.
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