By Dr. C. Evers Whyte
There’s a very good chance that you’ve never heard of “Post-Lyme Disease Syndrome,” even if you’ve suffered from Lyme disease itself. Post Lyme Disease Syndrome (PLDS) is as controversial as it is complicated, and many doctors will assert that it simply does not exist. However, if you have been treated for Lyme disease (LD) and still feel ill, you know, along with a growing group of medical professional, that PLDS is in fact, dreadfully real. And much like LD, PLDS manifests and presents itself in a variety of ways that can make it difficult to decipher and therefore treat. Sadly, many Lyme experts believe that the generally-accepted assessment and treatment practices are woefully inadequate. The good news, however, is that more and more doctors are recognizing the realities of PLDS and better still are having success treating it. There is hope!
HOW IT ALL STARTS
To truly understand PLDS we need to begin with an understanding of LD’s basic biology and how doctors in the US have been directed to view and treat it.
LD is caused by a strain of spirochete bacteria called Borrelia burgdorferi. Unfortunately, a majority of doctors, contrary to both empirical findings and a large body of research, stubbornly insist that once LD is treated with the Center for Disease Control’s (CDC) recommended 21-day course of antibiotics, it should be considered cured. Therefore, patients still experiencing symptoms are too often dismissed with a diagnosis of psychosomatic post-Lyme rather than an ongoing infection, or a set of very real physical ailments stemming from the Lyme disease and probable co-infection(s).
There are several studies that refute this outdated protocol for LD treatment. One in particular suggests that an estimated 30% of Lyme disease patients do not recover at all after being treated with the CDC recommended antibiotic protocol.
In addition to this, it is unusual to contract only one infection from a tick bite. Co-infections are rampant: Borrelia; Erlichia; Babesia; Bartonella; Micoplasma; and Rickettsia are all prevalent in the northeast, and most ticks are infected with these disease causing bacteria along with the one that causes Lyme. Still, many doctors don’t test for these co-infections, or look deeper into the patient’s whole picture for breakdowns in various other bodily systems, triggered by these infections.
To make matters even worse, doctors are under an enormous amount of pressure to argue against the existence of chronic Lyme infection because the insurance industry doesn’t want to pay for the ongoing treatment necessary to rid these unfortunate souls of the tenacious infection(s).
INADEQUATE TESTING STANDARDS
The Lyme screen (Elisa) test that many doctors still use may miss as many as 75% of positive Lyme infections, and much of the medical community doesn’t see these as “False Negatives.” Unfortunately, this means way too many people are going untreated without a proper diagnosis. The “Western Blot” test is much more accurate, but still not 100% so.
In a large, bitter nutshell, this all adds up to tens of thousands of patients being misdiagnosed, improperly tested, or not tested at all for what should be obvious Lyme related infections. And perhaps worst of all, truly sick patients are being told their suffering is completely imagined.
TINY TICKS, ENORMOUSLY DANGEROUS INFECTIONS
Borrelia organisms are among the most malevolent bacteria known to humankind. They can evade antibiotic therapy; down-regulate the immune system; withstand very cold temperatures and “starvation”; change their shape to become more resistant or invisible to the immune system; invade cells and “hide” inside them, and can even “cloak” themselves by pulling their host’s tissue around them! (Sounds like a sci-fi story, but it’s all too true).
The bottom line is that once they invade the body, these bugs are hard to get rid of, sometimes even when they’re caught right away. So it stands to reason that for many patients longer antibiotic therapy is necessary and very often essential. And if the infection has become chronic, a multi-faceted approach including long term antibiotic therapy; gut clearance; immune modulation; homeopathics; chelation therapy and detoxification, is the only way these people will recover.
NON-INFECTIVE POST LYME SYNDROME
Once chronic infection and co-infections have been ruled out, and patients are still not feeling as well as they did before they contracted Lyme disease, investigations must be made into related functional breakdowns triggered by the initial infection.
It is my firm belief, based upon published studies and my own research, that the Borrelia organism is so virulent that it attacks and/or negatively-activates many functional systems–nervous, immune, adrenal, inflammatory, GI, mitochondrial (energy), and musculoskeletal to name a few. The interrelated nature of these systems can, in some people, create a disruption in a key hormonal stress response system that is known as the “HPA axis.”
The term HPA axis is used to describe the intricate interactions between the body’s hypothalamus, pituitary, and adrenal glands. A well-functioning HPA axis helps the body remain stable under physiological and psychological stress through the actions of three hormones: First, the hypothalamus secretes a hormone that stimulates the pituitary gland to secrete a second hormone. This second hormone causes the adrenal glands to make cortisol, a hormone with widespread effects throughout many body systems. Besides affecting each other’s production and effectiveness, together and alone, each of these hormones is responsible for a myriad of bodily functions that impact our day to day wellbeing.
HPA AXIS IMBALANCE EVIDENCE
A research team led by Jens Gaab, Ph.D., of the Center for Psycho-biological and Psychosomatic Research at the University of Trier, in Germany; and the Institute of Psychology at the University of Zürich in Switzerland, have proposed that chronic fatigue syndrome may be the result of subtle alterations of the HPA axis.
In another study, Boston researchers discovered that the HPA axis in women with fibromyalgia was damaged. As a result, it does not properly regulate production of cortisol. “Impairment of these neuroendocrine systems may explain the underlying body-system malfunctions of fibromyalgia as well as the overlap in signs and symptoms between fibromyalgia and related disorders," write Gail K. Adler, MD, PhD, and fellow Harvard Medical School researchers. The study was conducted at Brigham & Women's Hospital, affiliated with Harvard, and published in a recent issue of the American Journal of Medicine.
Non-infective Post Lyme Disease Syndrome, I believe, is a phenomenon rooted in an HPA axis imbalance which combines Chronic Fatigue-Immune Dysfunction Syndrome; Fibromyalgia; and other aspects of post Lyme infection damage. In my practice I have seen true Post-LD syndrome cases, caused from the “shock to the system” that acute Borreliosis causes as it insidiously invades one’s entire body, in addition to the Chronic form of the infection, itself. There is nothing psychosomatic about the misery caused by such imbalances.
Evidence of these imbalances is proven through the use of less conventional testing that goes beyond typical CDC recommendations. One striking example: I have done adrenal hormone profiles on a number of LD patients whose Lyme screens were now coming back negative, yet the patients were still not well or recovered from LD. Their test results clearly showed HPA axis dysfunction. These Post-LD patients (as well as other patients with chronic infections) also showed significant improvements after adhering to the treatment regimen I’ve developed to address these issues.
HOW ALL-NATURAL POST LYME DISEASE SYNDROME TREATMENT WORKS
After testing and evaluation, my treatment program consists of medical foods, herbal medicine, diet, and gentle body work to positively impact:
1. HPA Axis rebalancing
2. Immune Up-Regulation
3. Inflammatory Down-Regulation
4. CNS (Brain) Support
5. Systemic Detoxification & Alkalynization
6. Pain Neutralization
If you’ve had Lyme disease and/or other tick-borne infections and haven’t felt the same since - even after antibiotic therapy, or if you’ve been bitten by a tick (not just deer ticks but dog ticks, too!) and are suffering symptoms (regardless of what the tests said) you need to seek help from a LD-educated doctor. You need to have LD and co-infections thoroughly ruled out- and if they are, you need an HPA axis evaluation, at the minimum. It is possible to find explanations, effective treatments and relief!
This article barely scratches the surface of the LD question, but I hope it clarifies some of the challenges faced by both patients and LD-educated doctors, and warns that there are currently gross misconceptions about LD and other tick-borne adversaries that act as obstacles to patient recovery. Do not be a victim of these misconceptions. You can look beyond conventional thinking and treatments to finally feel well again.
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