Spring! And time for a Health Tip on Lyme Disease and other tick borne illnesses. All in preparation for your summer vacation to those large northern suburbs Wisconsin and Michigan because each exports so many cases of Lyme Disease to our WholeHealth Chicago Centers.
The weather is warming and with warm weather, the tick population will explode. A little tick will latch to your ankles or fall in your hair, then bite (don’t worry, you won’t feel a thing), gorge lustily on your blood, then empty its gastrointestinal tract into your bloodstream. That’s medical talk for, “the tick takes a big sh-t into your blood”. In that sh-t, can live any of four bacteria, the most well known, Borrelia burgdorferi, a/k/a Lyme Disease.
All because you ventured through the Cheese Curtain into Wisconsin or you’re living life on the edge in Michigan. Okay, northern Illinois has its share of infected ticks as well. In fact 50% of ticks north of Chicago are infected.
Ticks are a cesspool with legs.
The total number of Lyme disease cases, caused by the organism is definitely on the rise. The current guesstimate from the Centers for Disease Control (CDC) is 476,000 a year, a dramatic increase from the 30,000 annually they estimated just a decade ago.
Moreover, even the CDC is uncertain if this is an overestimate or an underestimate. Thousands of cases are treated as Lyme but are not reported anywhere. Likewise, thousands of cases of Lyme disease are simply missed by both patient and physician only to surface years later in one of the two forms of chronic Lyme disease.
We see a lot of patients with chronic Lyme at WholeHealth Chicago, largely because Lyme Disease carries a real prejudice from the past, when doctors told patients there was no such illness and patients believed their doctors. As a result, many people have been ill for decades.
Let’s Clear the Air on Lyme
There are three faces of Lyme disease:
- Acute Lyme with or without co-infections
- Disseminated / late-stage / untreated Lyme with or without co-infections
- Post-treatment Lyme with or without co-infections
Lyme Disease (most common): Caused by Borrelia burgdorferi
Co-infections (other tick-borne diseases): Babesia, Bartonella, Ehrlichia, Anaplasma
– Yes, you need to be tested for all of them.
– Yes, you can get all from a single bite.
Acute Lyme Disease No one argues about the existence of acute Lyme disease. You’re in the woods in a Lyme-rich area. You get bitten by a tick (most people don’t remember the bite), you see a red rash or you don’t, and have a flu-like illness. Doctors in the Northeast and the upper Midwest see so much of this that they simply start patients on antibiotics without waiting for any test results (which can take weeks to turn positive). With correctly dosed antibiotics, the recovery rate is about 90%.
Post-treatment Lyme You and your doctor agree that you had Lyme in the past and thought you were adequately treated but now you have symptoms of fatigue, joint pain and brain fog. Your tests show evidence of your old infection. Likely your doctor will retreat your Lyme but some research is thinking this is an autoimmune phenomenon possibly from chronic inflammation. It has been compared to COVID-long haul.
Chronic Lyme Disease Debate
Here is where the Lyme controversy starts
Disseminated / Late-Stage / Untreated Lyme
Sometime in the past, you (or your child) got bitten by a tick, didn’t notice it, never saw a rash, and attributed the resulting illness (headache, fever, muscle aches) to a summer flu. You got better and totally forgot about the incident. The average age of this initial bite event is guesstimated at eleven, during a woodland romp.
Your symptoms went away because your immune system stepped in and did its job—suppressing, but not completely killing, the infection. Although the B. burgdorferi has spread through your body, it’s in a dormant (sleeping) state. It could remain suppressed like this for years—decades, even—and never give you a lick of trouble.
You’d never be tested for Lyme disease because you’re healthy, but if you were tested, you’d show positive antibodies for Lyme, still suppressing your infection. Very likely, thousands of healthy people living in Michigan and Wisconsin would test positive for Lyme, but since they’re fine, we don’t test or treat.
But now, it’s possibly years later and large group of patients diagnosed for years with chronic fatigue, fibromyalgia, and a wide variety of symptoms labeled as “psychosomatic” are found to have a positive Lyme test, although they deny ever having Lyme disease and don’t remember a tick bite.
Interestingly, many of these patients were diagnosed with chronic Lyme Disease after they had a severe case of COVID. In other words, it was as if their COVID sufficiently weakened their immune systems to allow their Lyme to “wake up” from its dormant state.
These chronic Lyme patients (and there are thousands) are the subject of an acrimonious debate among doctors termed the “Lyme Wars”.
One would never believe that these two issues would generate vicious and truly juvenile battles among physicians, but doctors are just as crazy as everyone else.
What brought about the “Lyme Wars” was an unpleasant combination of the following:
- Primary care doctors having little or no knowledge of tick-borne illness.
- Disbelief that an acute illness could re-emerge into chronic symptoms decades later. The average age of the first tick bite for a chronic Lyme patient was guessed to be eleven years old.
- Total faith in blood tests, which were later shown to miss 50% of Lyme cases.
- Massive underestimation of the number of new Lyme cases reported annually. The CDC originally reported “no more than 30,000”, but now admits “about 350,000”.
- Infectious disease “specialists” setting diagnostic standards that caused Lyme patients to suffer unnecessarily for years.
- When excellent tests for Lyme and co-infections finally became available, the number of patients with chronic Lyme disease turned out to be, well, jaw-dropping.
Here’s the scene, years, decades perhaps, after the infected bite: you are seeing doctors for a smorgasbord of symptoms very similar to fibromyalgia and chronic fatigue (ME/CFS). You don’t remember a tick bite although you were an outdoorsy kid and vacationed in WI every summer. Like many with fibro and ME/CFS, you’ve seen several doctors and told all your tests are normal (although usually they’re not tested for Lyme or had a second rate test). Then, along the way, someone does finally run a decent Lyme test and lo! it’s positive.
You’d think that when presented with a symptomatic patient who tests positive for Lyme, the treatment course would be clear. Lyme Disease is an infection: build immunity (nutritional supplements, healthful diet, ozone infusion, peptides), treat the infection with antibiotics and/or herbs. End of story.
But tragically, and I feel my blood boiling as I write this, many of you – even with clear evidence of disease – are denied treatment because your doctor read somewhere that, “there’s no such thing as chronic Lyme disease”.
Why the debate? Why withhold treatment?
Doctors who “don’t believe” chronic Lyme exists are usually the same group who deny the existence of fibromyalgia, ME/CFS, and other so-called ‘controversial illnesses’. They want evidence beyond a blood test for Lyme. When confronted with the positive Lyme test result, they’ll say, “That’s not good enough. You probably had Lyme years ago. Or else it’s a false-positive.”
The doctor-patient conversation can go like this:
You: You’ve given me a course of antibiotics for acute Lyme disease. Unfortunately, I’m still sick.
Doctor: Well, it can’t be Lyme. I’ve treated you for Lyme.
You: But I still feel terrible.
Doctor: You need a psychiatrist.
Or (even worse):
You: I’ve had fibromyalgia and chronic fatigue for years. I’ve read about chronic Lyme. Can you test me for this?
Doctor: No. There’s no such disease. You need a psychiatrist, or an infectious disease specialist, or a rheumatologist.
Or (the worst):
You: I’m not better. I paid for an advanced Lyme test myself and it came out strongly positive. This is why I’m so sick. Now can we start treatment?
Doctor: No. I don’t know anything about that lab. It’s not one we use at Northwestern/Rush/UofC/Loyola. Really, we can’t help you here.
Lyme Wars: From the Minority
A minority of doctors (dubbed LLDs for “Lyme Literate Doctors”) protest any implication that chronic Lyme disease is a psychiatric disorder. However, and given the stubbornness of a Lyme infection itself, there’s no unanimity on a treatment protocol.
Stance of LLD #1: One group of Lyme-literate doctors, whose struggle with the conventional medical community was documented in the 2008 film, Under Our Skin, believes that long courses of high-dose IV antibiotics are the best treatment to clear the body of Borrelia. However, many physicians, including those at WholeHealth Chicago, think this is far too risky, especially when clinical trials show no benefit of high-dose IV antibiotics over oral ones.
Stance of LLD #2: The other group of Lyme-literate physicians (we’re in this group), while fully acknowledging chronic Lyme disease is an infection, focus on both killing the Lyme germs (antibiotics, herbs) and strengthening the immune system (herbs, ozone UVB infusions, Thymosin Alpha-1 peptides).
Be patient, Lymies, know that you will eventually get better. If you need a Lyme literate provider here at WholeHealth Chicago schedule with us when you can.
Be well,
David Edelberg, MD