Getting to the Root of Chronic Illness Part VIII

Today, I am going to discuss the role that stealth, intracellular infections, such as Lyme disease and company as well as elevated nagalase levels, play in long-standing chronic illness. Many of the clients I work with have been trying desperately for years, to no avail, to eradicate the Lyme bacteria, Borrelia burgdorferi, as well as co-infections such as Bartonella, Epstein Barr, Human Herpes Virus 6, Mycoplasma, Chlamydia Pneumonia, Toxoplasmosis, Ehrlichiosis, and more from their bodies.

While these infections have great potential to cause unfathomable fatigue, pain, and a whole host of other life-altering, and sometimes life-threatening health challenges, my own health journey has taught me that overcoming chronic infections has much more to do with shifting the terrain within the body, correcting imbalances, and optimizing the function of organ systems than it does "killing" microbes.  As I have highlighted many times in past blog articles, my father (who was way ahead of his time) pointed this out to me as a child by teaching me the following statement:

  "Create the Correct Environment and Health will Follow."  

- David Eames Ellis Sr. 1932-2007

While chronic infections certainly do need to be directly addressed to some degree, my approach in working with clients is never to solely focus on "killing" infections.  Through my own lived experience and what I’ve seen in my work, I can confidently say that anyone who falls ill from chronic Lyme and co-infections already had widespread imbalance in their bodies at the time there was infectious exposure, and it is those underlying factors that need to be addressed, corrected, and healed in order to overcome chronic Lyme and company.  

Rather than being a hopeless victim of the Lyme spirochete or other bacteria and viruses, you can take your life back from the grips of chronic illness through addressing all factors of body, mind, and spirit that created illness in the first place, and Lyme is often just one part of that picture. Sometimes, when other underlying factors are correctly identified and addressed, chronic Lyme falls away as a natural by-product, without having to bring on loads of antimicrobials for long periods of time.  

Now, I’m not saying one cannot become acutely ill from these infections.  There is difference between contracting an acute virus or infection that must be treated swiftly, and falling down the very deep rabbit hole of chronic illness. When an otherwise healthy person gets a tick bite, or contracts a virus on a trip into the jungle for example, they typically treat the infection and move on with their lives sooner than later.

By contrast, when you become chronically ill with intracellular infections such as Lyme and company, the question becomes: What has weakened your immune system to the point that it is unable to get rid of these infections in the long-term? How did your body become susceptible to these infections taking root over the long haul and making you so ill in the first place?

My Own Diagnosis of Chronic Neurological Lyme Disease

When I was given the official diagnosis of chronic disseminated neurological Lyme disease in January 2006, I relocated to Kansas City for six months for intensive treatment.  Like many of my clients, I was relieved to finally have an explanation for my then-eight years of debilitating chronic health problems.

I paid upwards of $178,000 out of pocket for 6-months of 7-day a week IV antibiotics and integrative interventions such as IV glutathione and vitamin C, daily colonics, and bushels of supplements—and then returned home with a PICC line in my arm to continue on IV antibiotics for another year and a half.  I then switched to oral antibiotics for a total of four years.

I wore the “Lyme warrior” tee shirts, hung out at all hours in the Lyme disease Facebook groups looking for answers, and participated in the Lyme Disease Awareness Walk. I was fully invested in attributing all of my suffering to this infection and it became a big part of my identity.

And guess what? At the end of this time period, I was even sicker than before. All those years of antibiotics not only left me with much worsened health and an extremely compromised gut (which I now know is a major root cause of all chronic illness)—it also showed me that just targeting infections is ineffective and in many ways dangerous, both mentally and physically.

I was so focused on eradicating "the infection" that I became  obsessed with it and I constantly fretted and worried, continually activating  my stress response, which was a major contributor to my inability to get well. Also, focusing so narrowly on Lyme to the exclusion of the rest of my body caused further dysfunction in my other bodily systems. In fact, the more entrenched I became in the Lyme disease diagnosis, the sicker and more dysfunctional my body became. 

Through chasing down Lyme disease in my own body for many years on end, I now believe that chronic Lyme disease cannot and should not be the sole focus of treatment for anyone who has been diagnosed with it.  

In fact, it was only when I finally stopped focusing on =Lyme, and gave up my exhaustive quest to "kill" the infection, that I finally began to recover my health. I came to the realization that Lyme was not the only reason I was sick, and chasing it for as long as I did was counterproductive.

There is a delicate balance to be reached with Lyme—while the infection itself absolutely needs to be addressed, the bigger question is, why did the infection take hold in you in the first place and what is preventing one's own innate healing ability to come back on line?

What I believe to be the real reason the immune system is taken down by stealth infections such as Lyme and company are the following factors: unresolved trauma, unrelenting mental and emotional stress, poor lifestyle habits, leaky gut, gut infections, and toxic overload, all of which weaken and suppress the immune system. Over time, these stressors mount, and the more stress you add to the pile, the more likely you are to wake up and find yourself with a completely depleted immune system and immersed in chronic illness. The scales then tip into widespread metabolic chaos and no organ system is able to function properly.

Shifting the Focus Off Lyme to Supporting My Body Holistically and Rebuilding the Inner Terrain

In 2009, I completely walked away from the emphasis on pathology and infection as a way to heal from chronic Lyme and co-infections. I also walked away from anything medically conventional, even in the functional and Lyme-literate space, unless it was life or limb. I got to a point where the pain of staying where I was and continuing on that path was way more painful than the discomfort of changing my viewpoint and approach.

I started paying attention to my daily decisions, routine, bedtime hours, and movement, and how they made me feel. I refused to focus on illness anymore and instead started focusing on how to cultivate health. I left all the chronic illness Facebook groups I had joined, which were filled with a lot of alarmist ideas and fear-based thinking.

I even made a rule with my best friend that we could not discuss our illnesses with each other; we had to talk about other topics. For the first time in my entire life, I began to pay attention to what caused me emotional and psychological stress, and actively chose not to engage in those behaviors, thus down-regulating my own stress response—which was a crucial first step toward reclaiming my vitality.

I then shifted my focus off chasing infections and instead started to support my immune system, hormones, detoxification pathways, and most importantly, gut health; which I continue to work on to this day.  I started studying functional medicine as well as mind-body applications and began applying them to my situation.  I sought out holistic-minded practitioners that were aligned with my views of health and healing.  

I also began exploring far infrared sauna therapy, coffee enemas, dry skin brushing, lymphatic drainage massages, and many methods to support detoxification that had never been mentioned to me before. Eventually, I discovered and treated parasitic, bacterial, and yeast infections that were living in my gut and sucking my vital reserves.

While I did cycle on and off of gentle antimicrobials that worked at the cellular level for Lyme and co-infections, I did not hyper-focus on them nor did I stay on these antimicrobials for years.  If anything, I made emotional healing, gut health, and rebalancing other bodily systems my focus. And little by little, I began to get well. Today, I am able to hike 3.5 miles on hilly terrain with my young dog, Tader, every morning, I run a very busy functional health coaching practice, and I enjoy an active and peaceful life with my husband in our lake front home.  

I no longer fret about whether or not I still have Lyme in my body.  I most likely do but my immune system is now handling it.  I am of the belief that Lyme most likely resides in everyone to some degree.  Whether or not it becomes activated and takes hold in a chronic form is contingent upon the integrity of the immune system and the health of our cells and bodily systems. 

While I am still on my healing journey and working to repair the damage that incurred over a very long health journey, I am absolutely experiencing physical, mental, and emotional strength and renewed vitality.

I can honestly say I am genuinely free from the strong grips that chronic illness once had on me.  I have learned to love myself once again.  I love being alive, I love my life, and I am grateful for every day.  

All of what I discussed in this article thus far is the same approach I now take with my clients who are suffering from Lyme and co-infections, mold illness, SIBO, parasites, or any other type of chronic, wide spread imbalances in the body.  I use a holistic, functional approach in order to support and increase the function of the entire body, while I also address the infections.

It’s never just about the infections! It’s about correcting the imbalances in the body that allowed them to take hold in the first place. The inner terrain needs to be cleaned up and brought back into balance through a multi-faceted, multi-systems approach. Similar to how the Chicken Pox or Epstein Barr virus lives within us once we’ve been exposed, I believe Lyme can remain dormant in you until various stressors weaken your immune system.

This may be a much different approach to treating Lyme disease than you’ve ever heard before or that you are open to exploring at this time, but I swear by it. I am living proof that this is the path to recovery, after years of failed treatment approaches with some of the country’s best Lyme-literate and functional medicine doctors.

Elevated Nagalase Levels: A Missing Link to Healing The Immune System

Another crucial component of my recovery was bringing down my extremely elevated nagalase levels, which were disarming my immune system.

Nagalase is an enzyme most commonly produced by stealth viral infections, as well as cancer cells, which disarms the immune system by greatly inhibiting macrophage activity. Macrophages are one of the key players in the innate or inborn immune system.  Macrophages engulf and digest cellular waste, foreign cells, microbes, cancer cells, and anything else that does not have the specific qualities of healthy human cells.

When stealth viral infections produce nagalase, the immune system has a very hard time mounting a response to attack and kill the infections. So you end up with what myself and many doctors, such as Dr. Richard Horowitz, call Multiple Systemic Infectious Disease Syndrome—in other words, a high body burden of infections.

Everyone has a certain level of nagalase in their systems with optimal values being between .32 and .95. When levels exceed the upper value, however, macrophage activity becomes overwhelmed and the immune system can no longer keep up with protecting the body against foreign invaders. Chronic fatigue and pain syndrome sufferers often have high titers for a wide array of viruses with two of the most common being Epstein Barr and HHV6 (Human Herpes Virus 6). In light of this, I would venture to say that a large percentage of people who suffer with chronic fatigue have elevated values of this destructive enzyme.  

I need to mention, however, that one can have chronic viral issues without having elevated nagalase. Elevated nagalase is more like an advanced level of viral activity with greater virulence. When I have clients present with elevated viral titers, health challenges that correlate with active viral infections, and elevated nagalase, I implement an approach that directly addresses the viruses, simmers brain inflammation, strengthens communication in the brain-gut axis, and lowers nagalase levels.  To skip one of these factors would not be a comprehensive enough approach in my opinion.  

When I first had my nagalase levels checked in 2012, they were at a whopping 4.2!  So, I had been walking around for God knows how long with a completely fractured immune system. It is no wonder I succumbed to every cold and flu bug that I came in contact with not to mention suffered from recurring herpetic lip sores every 6-8 weeks and could not, for the life of me, get on top of the chronic intracellular infections of Lyme and Company. The practitioner with whom I was consulting at the time was rather shocked that I was still vertical and that my brain fog and cognitive impairment were not much worse.  

She was also very concerned about the possibility of cancer sitting somewhere in my body that had not yet been discovered.  You see, nagalase is also produced by cancerous tumors and so the enzyme blood test is commonly used within the holistic cancer arena as a way to monitor treatment progress.  My doctor strongly recommended a full body PET Scan but I respectfully declined and explained my reasoning.  My intuition told me it was not cancer and if it was, it would not have changed my approach or philosophy to restoring my health; I still needed to repair my fractured immune system.  I also would not entertain chemo or radiation. 

The good news is that it is totally possible to lower this enzyme by properly addressing other hidden stressors and by increasing one’s levels of GCMAF (glyco protein macrophage activating factor) with the use of exogenous sources of it. GCMAF is an essential vitamin D-binding human protein made within the body that aids the innate immune system in removing diseased cells, including cancer cells. Healthy people are able to make adequate amounts of this essential protein but people with suboptimal health cannot. This is why exogenous sources of GcMAF become beneficial in lowering elevated nagalase levels and recovery from chronic fatigue and pain syndromes.

I began slow, gradual supplementation with GcMAF in 2012.  GCMAF therapy comes in injectable form, sublingual sprays, and transdermal applications. While I did use injectable at first, I do not recommend it unless it is for addressing cancer.   I learned the hard way about this by succumbing to a severe case of IRIS.  IRIS (immune reactivation syndrome) happens then the immune system wakes up too fast; thus leading to wide spread, uncontrollable inflammation that typically involves the brain and central nervous system.

I will spare you the details of my experience with this; just know that It was very painful and set me back in my healing by many months.  The lesson I learned is that forcing the body to heal, rushing the process, and further taxing a an already taxed system is never a good or productive idea.  

I have since used the sublingual drops and transdermal creams with favorable results.  I am happy to report that my most recent nagalase blood test results as of February 2017 came in at .9; which is now within healthy ranges.  I will continue on a maintenance dose of GCMAF cream applied to the lymph nodes in my neck once daily or possibly every other day for another year before thinking about discontinuing.  

I hope you found today's discussing useful to your own healing journey.  If you are currently suffering from the grips of chronic health challenges, please know that you too can absolutely reach a point of deep healing.  I am living proof! 

Tune in for the next and final installment where I will share the role that toxic mold played in my illness as well as my current approach to treating Chronic Inflammatory Response Syndrome!