In H.G. Wells’ novel (and Steven Spielberg’s movie), War of the Worlds, aliens from Mars invade earth, fully intending to destroy it. Earthlings are losing against the Martians until suddenly the Martians start dying off. Scientists later discover the aliens had no immunity against earth’s bacteria and paid the price with their lives.
With the current Lyme Disease situation, we’re the immune-weak aliens. We invaded and cleared forests and then became victims of microbes harmless to the animals carrying them. We’ve seen evidence of this with swine flu, bird flu, the Zika Virus, and West Nile virus. Climate change is likely a major contributing factor.
The bacterium that causes Lyme disease, Borrelia burgdorferi, is classified as a spirochete, meaning it’s spiral-shaped, a cousin to syphilis. Borrelia live quite contentedly in forest mice, who do not get Lyme disease. Then a particular species of tick (the black-legged tick/deer tick) sucks mouse blood and hops over to feed on a deer, which don’t get Lyme disease either. And, you may have noticed, you’re seeing a lot of deer these days, most carrying Lyme infected ticks. Or, instead of the deer, the tick hops onto innocent you, out enjoying a summer day, communing with nature.
Unfortunately, unlike the mouse or the deer, you have no immunity against Borrelia.
The tick attaches its mouth to you and gorges on your blood. Once sated, it literally empties the contents of its intestines into your bloodstream. This chunk of ‘tick poop’ may contain Borrelia or other related bacteria (Babesia, Bartonella, Ehrlichia) called ‘co-infections.’ If you spot a tick attached to you, remove it ASAP with pointed tweezers – the faster you remove an infected tick the less chance you have of developing Lyme.
Infection, Symptoms, and Treatment
If you do get infected with Borrelia, you’ll be coming down with what’s called acute Lyme disease. You’ll feel like you have a bad case of flu: fever, headaches, joint pains, muscle aches, brain fog. A good rule to remember, flu is a winter illness, Lyme a summertime one. Also, unlike COVID, there aren’t respiratory symptoms with acute Lyme. Much has been made of the famous bull’s eye red ring at the site of the bite, but since it does not appear in nearly 25% of people with Lyme, doctors no longer use it in deciding whether or not to start treatment with antibiotics.
The diagnosis of Lyme is a clinical one, based on your symptoms and your doctor’s physical examination. Lab tests are useless at this point. The screening test for Lyme looks for antibodies that your immune system creates in response to infection, which take weeks to develop. You don’t have the luxury of time. It’s best to start treatment ASAP.
As far as antibiotics go, doxycycline is quite safe. If you live in an area where Lyme disease is prevalent, you’ve been bitten, and the tick is engorged with your blood, this means it’s been attached for a while and virtually all doctors/nurses/urgent care centers will recommend a course of antibiotics. This is to prevent you from developing acute Lyme disease and from acute Lyme moving on to chronic Lyme.
Chronic Lyme Disease Debate
If you’ve retrieved a tick that’s infected you with Lyme, removed it, and your doctor thinks you actually have Lyme, you’ll get three to four weeks of antibiotics. There’s an 80% chance you’ll be fully cured and your Lyme will become history.
However, there are two other ways Borrelia causes mischief:
1. 20% of patients with actual Lyme will not be treated successfully. Months, sometimes years after treatment they’ll be feeling “chronically unwell” (usually fatigue, muscle aches, joint pains). They certainly remember having Lyme, taking antibiotics, but never really recovered. Some doctors call this “Post Treatment Lyme”, and it has recently been compared to COVID-long haul.
2. Another unfortunately 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. These patients (and there are thousands) are the subject of the acrimonious debate among doctors.
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.
A perfectly good name for #1 and #2 is, “Chronic Lyme Disease”. #1 Chronic Lyme might be expanded to “Failed Post Treatment Chronic Lyme”.
#2 Chronic Lyme expanded to, “History of Multiple Symptoms of Chronic Ill Health with Positive Lyme Test, but no history of tick bite”.
Here’s the scene, years after infection: these patients are seeing doctors for a smorgasbord of symptoms very similar to fibromyalgia and chronic fatigue (CF). Those from Group #2 don’t even remember a tick bite. Like many with fibro and CF, they’ve seen several doctors and been told all their 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 these patients – even with clear evidence of disease – are denied treatment because their 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, CF, and other controversial illnesses I wrote about last week. 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 goes something like this:
Patient: You’ve given me a course of antibiotics appropriate for acute Lyme disease. Unfortunately, I’m still sick.
Doctor: Well, it can’t be Lyme. I’ve treated you for Lyme.
Patient: But I still feel terrible.
Doctor: You need a psychiatrist.
Or (even worse):
Patient: 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 (the worst):
Patient: 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. Really, please go to a psychiatrist.
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, there’s no unanimity on a treatment protocol.
Stance of the medical minority #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 the medical minority #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, schedule with us when you can.
David Edelberg, MD