Once upon a time, Lyme disease was considered an east coast thing – and something you could only get from hiking in the woods (as if ticks – the bugs whose bite causes Lyme – never ventured elsewhere).
Once upon a time, it was thought that a bulls-eye rash was the most consistent, obvious symptom of Lyme: No rash? No Lyme.
Once upon a time, doctors believed that Lyme was easily treated with antibiotics – and that there was no such thing as “chronic Lyme disease.” If the antibiotics didn’t work, you didn’t really have Lyme. Those who didn’t heal were just anomalies.
Times have changed. Science has progressed. Yet there are still those who think these things.
Meanwhile, we’re seeing more cases than ever – 25 times more than when the government first started tracking the disease back in the early 1980s. The CDC estimates that there are 25,000 new cases per month – 822 per day, 34 per hour. These cases are cropping up across the country and don’t always fit the classic Lyme pattern.
They do share the same bacterium, an organism named borrelia burgdorferi. But one of the major complications of this bug is that it exists in at least three different forms: as a spirochete corkscrew, a hard protected cyst and a form that has no cell wall and survives inside the person’s cells.
It’s also an extremely diverse species, with over 100 strains in the US alone. It’s believed that this is one of the reasons it’s so persistent. No current antibiotic is able to kill every strain.
It may also explain why it is so difficult to diagnose. The standard Elisa test is far from accurate, generating false negatives 50% of the time. No accurate tests exist to determine whether B. burgdorferi has been eliminated after treatment. The CDC has left it to physicians to diagnose the condition, based on the patient’s symptoms, health history and risks.
Now, if a physician believes that such a thing as chronic Lyme disease doesn’t exist, then of course he or she will never diagnose it. Or may misdiagnose it.
For as we’ve noted before, Lyme disease easily mimics other enigmatic health conditions, including MS, CFS, ALS, fibromyalgia, Parkinson’s and more.
It may bring with it “classic” Lyme symptoms like the bulls-eye rash – or it may not. It may have autoimmune effects – or not. It may manifest neurological symptoms – or not. As with any chronic illness, a wide variety of factors influence its expression, from nutritional status to toxic load to immune health; from the particular type of infection to constitution to overall health status.
Making a proper diagnosis means ruling out as much as it means ruling in. Ruling it in means acknowledging that yes, Lyme can be chronic – a long-term thing.
a significant number of people who are sick and desperate for a cure for their Lyme disease symptoms months and even years after they have been told they are cured of the disease… The current drugs we use aren’t good enough for these persistent cases.
Yet there is another factor, as well: Chronic Lyme – also known as tertiary Lyme or Post-Treatment Lyme Disease (PTLD) – is about more than just the initial infection. There may be residual damage from that insult, or bacteria themselves may be persisting. There may be – indeed, often are – co-infections. Although the initial problem may be local – confined to a small area – the body’s full complement of defenses respond to it and thus are potentially affected.
More, there are many potential contributors to patients’ symptoms beyond the initial infection. These include fungal toxins (mycotoxins), heavy metals, inflammatory molecules, sleep disruption, immune dysregulation, environmental toxins, allergies, and more.
For this reason, it may be more accurate to call it, as Dr. Richard Horowitz does, Multiple Systemic Infectious Disease Syndrome.
This is why Dr. Joe takes the time to thoroughly investigate each Lyme patient’s complete health history, as well as current symptoms and lab results. Like a detective, he collects these “clues” and finds the pattern to first make an accurate diagnosis and devise an appropriate treatment plan.
Fortunately, “chronic” only means “on-going,” not “incurable.” Healing can – and does! – happen. It requires appropriate, individualized therapy, support and the commitment of the patient to making critical improvements in lifestyle choices to support that healing over the long-haul.
If you are in the Los Angeles area and would like to learn more about chronic Lyme and available treatments, we encourage you to attend Dr. Joe’s upcoming talk at the monthly meeting of the LA Lymie Group, which was created to keep those in the LA and surrounding areas in contact, to facilitate friendships, schedule meetings and create a community where we can support each other, exchange valuable info and inspire each other.
Their meeting will be held this Sunday, February 1, at 2:30pm, with the talk beginning at 3. It will take place in the community room at the Colorado Center, 2500 Broadway, Santa Monica (click for directions and parking info). It is open to all, but the group asks that you RSVP in advance.
To RSVP or get info on future meetings, join their group on Facebook. Members are screened to ensure that only someone with Lyme or a loved one of someone with Lyme join the page. This is the group’s preference to ensure privacy and a secure place to talk openly.
If you can’t make this meeting but are interested in the diagnostics and treatment options we offer in our office, feel free to give us a call. We’re always happy to answer questions!