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The Growing Threat of Post-Treatment Lyme Disease Syndrome

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What started as an obscure illness some 40 years ago has now exploded into a significant public health concern. Higher numbers of Lyme disease cases are reported every year, and the number may reflect only a small portion of actual people affected. You may be familiar with the Centers for Disease Control (CDC) statistics, which put the number of reported new cases at 30,000 per year, but the suspected unreported total at about 300,000.

But while Lyme disease has emerged into the forefront of the public consciousness, much of the medical community seems to have its head in the sand on the issue. Most doctors still don’t recognize Lyme disease when it occurs, and they don’t understand how to properly deal with it when they do recognize it.

On the surface, it seems simple enough: When someone is bitten by a tick and symptoms occur, a trip to the doctor confirms that Lyme disease is present and a prescription for antibiotics cures the illness — no worries.

But that’s generally not what happens. Instead, tick bites tend to go unnoticed — Lyme disease is most often spread by nymph stage ticks, which are the size of a head of a pin. Symptoms of acute Lyme disease are generally mild and sometimes don’t occur at all.

Even when the tick bite is recognized and symptoms strike, testing is unreliable and false negative results occur. There is also evidence that the standard course of an antibiotic called doxycycline, as recommended by the CDC, doesn’t eliminate the microbes from the body. In a 2018 study, researchers were able to culture live Borrelia burgdorferi — the bacteria associated with Lyme — from 12 symptomatic patients who had tested positive for Lyme disease by CDC criteria and undergone the CDC-recommended treatment.

Extending the course of antibiotics doesn’t appear to work, either. A study in 2015 demonstrated that Borrelia spirochetes can persist in the body despite six months of antibiotic therapy in patients with chronic symptoms. Yet still some infectious disease experts at the CDC and Infectious Diseases Society of America maintain that the bacteria are always eliminated by antibiotics, and that chronic symptoms are not caused by bacteria.

When people develop chronic Lyme symptoms despite undergoing antibiotic therapy, it’s called post-treatment Lyme disease syndrome (PTLD). The recognized incidence of PTLD is 10-20 percent of Lyme disease cases, but because most treated cases of Lyme disease go unreported, the actual incidence may be much higher.

Overlapping with PTLD are unrecognized cases of Lyme disease that are not treated early on with antibiotics and that go undiagnosed until after chronic symptoms develop. This group self-identifies with the label chronic Lyme disease, though the medical establishment does not recognize this diagnosis. Chronic Lyme disease may represent the very largest group of Lyme disease patients, but given its lack of recognition, knowing the actual incidence is near impossible.

Neither post-treatment Lyme disease nor chronic Lyme disease respond well to antibiotic therapy. The reason likely has to do with the nature of Borrelia and the very definition of why infections become chronic.

Borrelia burgdorferi is a very stealthy microbe. As soon as it enters the body by way of a tick bite, it immediately infects white blood cells (WBCs). That allows it to do two important things:

  • It can hitch a ride to tissues throughout the body, where it infects other types of cells to scavenger nutrients and resources. Once deep in tissues and inside cells, it becomes very resistant to antibiotic therapy.
  • It can manipulate the immune system by causing the infected WBCs to send out faulty messages that reduce the effectiveness of the immune system, allowing microbes in tissues to become established.

Even Borrelia, however, is no match for a healthy immune system. As soon as they enter a person’s system, WBCs are hot on their tail. But because Borrelia’s strategy is to become established deeply in tissues and not cause overwhelming infection, symptoms of initial infection are mild and can go unnoticed.

Often a stalemate is reached between the microbes and the immune system, such that the microbes persist at low levels in tissues, but are continually suppressed by the immune system, so symptoms don’t occur. As long as the immune system is healthy, this subclinical (a.k.a. symptom-free) chronic infection can go on for a lifetime. If immune system functions become weakened, however, microbes deep in tissues flourish, resulting in a wide spectrum of chronic symptoms.

Borrelia burgdorferi is far from the only microbe that can be associated with this scenario. There are at least a dozen other species of Borrelia worldwide that can cause Lyme disease, and more than 100 known microbes with similar stealthy characteristics that can cause Lyme-like symptoms (and that number may be just scratching the surface). They are spread by ticks, other biting insects such as fleas and lice, sexual and other intimate contact, contaminated food and water, and breathing contaminated air droplets.

In other words, everyone is exposed to some of these microbes, but some, like Borrelia, have higher potential to cause chronic illness than others. None of them, however, will make you chronically ill unless your immune system is weak. And that’s where the real crux of the problem comes to bear.

PTLD and chronic Lyme disease are a symptom of something much bigger — and more concerning — than a tick bite: We are living in an age of chronic immune dysfunction.

Our world and our lives have become saturated with stress factors that disrupt immune system functions. Processed food, oppressive stress, environmental toxins, a sedentary lifestyle — they all disrupt immune system functions. It shouldn’t be a surprise that chronic forms of Lyme disease and many other chronic illnesses such as fibromyalgia and chronic fatigue syndrome (ME/CFS) have become so prevalent.

As such, the solution to PTLD and chronic Lyme disease is not more or better antibiotics. The only way to deal with these types of chronic illnesses is restoring normal immune system functions. Healthful diet and lifestyle play a pivotal role, but in my practice, I have found that patients struggling with PTLD or chronic Lyme disease respond best to a comprehensive lifestyle program that includes herbal therapy.

Many herbs offer antimicrobial properties that are particularly beneficial for suppressing microbes that have stealthy characteristics, balancing disruptions of the overall microbiome, and restoring normal immune system functions. A few favorite herbs include andrographis, cat’s claw, cryptolepis, reishi, cordyceps, and Chinese skullcap.

Ultimately, the solution to avoiding PTLD and chronic Lyme disease is two-fold: Avoid tick bites as best you can, and keep your immune system healthy and strong. Do that and not only will your risk of tick-borne illness decrease, but so will your risk of numerous other chronic illnesses.

References

  1. Middelveen MJ et al. Persistent Borrelia Infection in Patients with Ongoing Symptoms of Lyme Disease. Healthcare (Basel). 2018 Apr 14;6(2). pii: E33. doi: 10.3390/healthcare6020033.
  2. Embers ME et al. Variable manifestations, diverse seroreactivity and post-treatment persistence in non-human primates exposed to Borrelia burgdorferi by tick feeding. PLoS One. 2017 Dec 13;12(12):e0189071. doi: 10.1371/journal.pone.0189071. eCollection 2017.
  3. Rudenko et al. Isolation of live Borrelia burgdorferi senso lato spirochaetes from patients with undefined disorders and symptoms not typical for Lyme borreliosis. Clin Microb Infect. in press 2015, 1.e-1e.7
  4. Walter KS et al. Genomic insights into the ancient spread of Lyme disease across North America. Nature Ecology & Evolution. 2017 Aug;1:1569–1576.
  5. DeLong A, Hsu M, Kotsoris H. Estimation of cumulative number of post-treatment Lyme disease cases in the US, 2016 and 2020. BMC Public Health. 2019 Apr 24;19(1):352. doi: 10.1186/s12889-019-6681-9.
  6. Marques A. Chronic Lyme disease: a review. Infect Dis Clin North Am. 2008 Jun;22(2):341-60, vii-viii. doi: 10.1016/j.idc.2007.12.011. Review.
  7. Lantos P. Chronic Lyme Disease=. Infect Dis Clin North Am. 2015 Jun; 29(2): 325–340. doi: 10.1016/j.idc.2015.02.006
  8. Cook MJ. Lyme borreliosis: a review of data on transmission time after tick attachment. Int J Gen Med. 2014 Dec 19;8:1-8.
  9. Cutler SJ, Ruzic-Sabljic E2, Potkonjak A. Emerging borreliae – Expanding beyond Lyme borreliosis. Mol Cell Probes. 2017 Feb;31:22-27.
  10. Persing DH et al. Detection of Borrelia burgdorferi DNA in museum specimens of Ixodes dammini ticks. Science. 1990 Sep 21;249(4975):1420-3.
  11. https://www.cdc.gov/lyme/postlds/index.html CDC recommendations for PTLD
  12. https://www.newsweek.com/2019/05/31/post-treatment-lyme-disease-syndrome-cases-rise-doctors-1423783.html

Getty Image via Gheorhge

Originally published: July 9, 2019
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