The longer I battle with the effects of Chronic Lyme Disease, the more I want to get the word out there that Lyme is so much more than a tick bite. When the average person heres of someone with "Chronic Lyme," they tend not to differentiate what the word "chronic" before the term "Lyme" actually means. Due to skewed, unreliable testing, and doctors being unable to find a quick, "one shot" solution, patients almost always get dumped to the way side. In the end, "Chronic Lyme" is not taken seriously, thus making those with it left to figure things out on their own.
How it Begins
Getting the general "Lyme Disease" can be through ticks, mosquitos, spiders, fleas, or mites which are carried via deer, mice, chipmunks, squirrels, birds, raccoons, skunks, possums, and many other animals. Once bitten, spirochetes enter into the bloodstream, multiplying rapidly every day. If you complain to your family medical doctor about having the "common" symptoms of the acute onset of Lyme, such as a bulls eye rash, fatigue, achey joints, or headaches, they will (if you are lucky) stick you on 30 days of doxycycline, an antibiotic they claim will kill all active Lyme in your system. However, with 300,000 new infections every year, it is clear that this standard dose of antibiotics is nowhere near enough. Results from a John Hopkins University study showed that 20% of individuals treated with this textbook protocol had new, widespread body pain, 36% reported new-onset fatigue, while almost half had neurocognitive problems.
Infestation
Lyme spirochetes have the crafty ability to nestle themselves in between cells, making them safe from the immune system's white blood cells, whose job is to fight against any foreign invader. They also tend to bind with heavy metals and form literal protective shields called "biofilms," making them resistant to antibiotics. In other words, spirochetes are a small bug with a BIG issue, creating various problems depending on how the individual is created.
Though they have many technical scientific names and co-infections, the general term for these spirochete bacteria is “Lyme." A great metaphor for these evil minions would be to picture them as termites. From the outside, an infested house (or in this case, a body) can seem perfectly fine. Yet the reality of the situation is that inside the covered and painted walls, bugs are slowly working away to destroy the structure. No one is aware of the issue at hand, until suddenly, the house collapses due to weeks, months, or even years of being slowly broken down and weakened. With this picture in mind, it is easier for people to understand how the “typical” tick bite, bullseye rash Lyme (which is shrugged off by both smart and ignorant doctors alike) enters into the dreaded, and even deadly, “chronic” stage.
My Experience
Because I, like many others, did not see a rash (which is thought by western medicine as being the only real indicator of Lyme), proper treatment was not given. Lyme spirochetes, much like the termites mentioned above, were left unrestrained and free, able to wildly target any system in my body and nibble away at its integrity and function as they pleased. Therefore, though we were not aware of what internally was truly happening in my body, rotating symptoms such as extreme joint and muscle pain, sinus infections, finger sores, and loss of menstrual cycle were all ways my body was trying to fight back. However, once it had enough of trying to beat the foreign invaders, it collapsed. In other words, my body hit the "brick wall," a term other Chronic Lyme patients know all too well.
Those who have never experienced a chronic illness do not understand how all the sudden you just “develop” one. However, that is the most common misunderstanding of Chronic Lyme Disease, as you do not simply wake up one day with a slue of life threatening issues. Regardless of numerous tests not being able to "diagnose" anything wrong, the body slowly becomes extremely weakened by the Lyme spirochetes and it is no longer able to withstand this deteriorated state.
Instead, every organ goes into shock, stopping the communication it has with others, and simply tries to work on keeping itself from being damaged any further. Inside the body, there is a natural flow and rhythm of all the bodies internal functions. However, when something threatens this state of homeostasis, the different systems that were once communicating and thus creating a healthy body, stop talking to each other. Because the body is intelligent enough to realize that something is not right, it does what it was programmed and designed to do (aka enter self protection mode). While every organ, cell, nerve, muscle, and tissue is working on keeping itself protected, toxic bacteria (in this case Lyme) and viruses are able to breed and manifest throughout all of the once empty spaces that literally compromised the individual's skeleton.
Compressed Celiac Artery
One example of this would be a condition that I developed at the beginning of my illness called a “compressed celiac artery.” As one of your major arteries directed towards the heart, your celiac trunk is located on the upper right side the torso, feeding to various digestive organs. After almost a year of literally not being able to eat anything without excruciating pain in my entire abdomen, face and body drained of any signs of life, and weighing only 83 pounds, we were able to figure out through a MRA scan that my diaphragm had literally dropped onto my celiac artery. With this kink in my blood flow, digestive organs were unable to function, thus making anything I ate go to waste, due to not being able to take in the calories, nutrients, or vitamins.
Now, based on the research and conversations with many world renowned doctors I have had, no one is quite sure what exactly causes this condition. It is not necessarily from weight loss, though it can be coupled with this issue, losing weight is not the actual cause. Despite having dozens of tests done that scanned my abdominal cavity for any issue, an MRA (magnetic resonance imaging) was needed show my internal arteries, not just organs (as is the case for an MRI).
This compression syndrome can leave one puzzled and wondering why in the world a diaphragm would randomly just "collapse" on itself. However, with understanding of the body and how everything works together, it is more clear, and rather logical reasoning, as to why this thin skeletal muscle that separates the abdominal and chest cavity would drop. Truly, everything that happens in the body, whether internally or externally, happens for a reason. My body didn't just compress the celiac artery because it felt like it, but rather because it was trying to protect more important organs from the harmful situation at hand.
Therefore, with the infection of spirochetes terminating my body, in attempt to save the lungs, heart, and surrounding GI organs from further damage, it is highly possible the diaphragm literally tried to wrap around and save my internal systems. Talking with one of my specialists, we do not see a collapsed diaphragm as a way of it giving up, but rather its own, natural, intuitive nature to protect what it was given to rule over in the body. In the process however, my celiac artery, which supplies life to the intestines, stomach, liver, pancreas, gallbladder, and spleen, got obstructed.
Treating the Effects
Chronic Lyme is known as the “master of disguise” or “great imitator” when it comes to disease. Because there are so many different strains of Borrelia burgdorferi, the patterns that may occur in an individual are different in everyone. Problems that occur along side of the initial infection include Babesia, a blood borne parasite carried along with Lyme spirochetes, and Bartonella, a gram negative pathogenic bacteria. Though 30 days of doxy might sound like enough, most Lyme bacteria have become resistant to antibiotics and know how to trick and invade the immune system. Because the body eventually begins to attack itself, Lyme in its chronic state can cause autoimmune damage. Therefore, in order to overcome the various infections created by the initial onset of the Lyme bacteria, the bodies immune system must become strong, simultaneously fending off any further issues that may arise.
Peeling Back the Layers
In other words, Lyme bacteria invade the body, weakening and thus damaging every cell in their path. Cells, which are the foundation of our bodies organs, must be healthy in order for the body to heal itself. Without a strong cell, the body will be susceptible to the many problems that occur after being exposed to spirochetes. In my case, after the Lyme severely damaged my small nerve endings and made my organs go into lock down mode, various infections including, H.pylori, SIBO, Bartonella, Babesia, Rocky Mountain Spotted Fever, tape worms, yeast infections, aeromonas hydrophila (gram negative bacteria), protozoa and other parasites, all became part of my illness. However, the story does not end there, and I do not believe it has to for any Lyme patient.
With multiple complications overriding the bodies normal functions, healing from Chronic Lyme Disease can seem impossible. How to break the cycle and make spirochetes unable to reproduce, hide out, or come back when the “smoke has cleared,” is one of the most frustrating things to figure out. Ultimately, the body does have the power to get better, it just needs some direction and help. I know what it is like to be doing all of the right things and still go nowhere. Running is circles is what my body does best, due to the damage caused by untreated Lyme bacteria. In order to reverse this effect, I must get back the integrity of each and every cell in my body. Being secure on a cellular level will allow me to fight against all of the foreign particles circulating throughout my body. Infections are able to be destroyed, and ultimately stay gone, due to the body functioning normally. When cells are working, organs are able to re-learn their lost functions, and thus create a strong and resilient body once more.
Diagnosing Chronic Lyme is one thing, while healing from the aftermath is a whole other story. This process, while ignored by most doctors, is NOT impossible, but rather inside each and every one who suffers with this debilitating disease. However, I do not believe that the hope for healing is not just available to those with Lyme, but rather anyone who is still alive. If you are breathing, your body is still beating whatever it may be that is compromising its function. No matter what the odds, the human body ultimately DOES want to find true health again. As my Chinese medicine doctor says, “getting sick is like a mountain crashing, while healing is like the journey of a silk worm.”
Speaking Up
Soon, I plan on talking more in detail about two of the main healing treatments that I am on right now. In the meantime, I would love to hear from all the Lymies out there that have been shoved down by conventional medicine and told there is no hope for them. Instead of being "hush hush" about personal treatment plans, doctors, or personal experiences and complications, I am all about helping others and supplying them with information and resources that they might need. Though I still may feel awful, I will never succumb to the belief that there is no hope for healing, because there is, and it is right there inside each and every one of us.
John 5:6 "When Jesus saw him lying there and learned that he had been in this condition for a long time, he asked him, "Do you want to get well?"
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