The Roots of Autoimmune Crisis (My updated story of Lupus and Lyme)
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For those of you following my healing journey, here’s an update. For those of you here for the first time? Welcome to a conversation of HOPE.
A little over a year ago, I asked if it was possible to heal autoimmune disease naturally? I believed then (and believe now) that it IS and that our mainstream institutionalized medical system is largely hampering our efforts. Not only that, but the constant ingestion of damaging pharmaceutical medications are often making us sicker, not better.
An award-winning rheumatologist once patted me on the bum and told me that my suffering was just a lack of sleep. I cried all the way home and paid him $600 out of pocket for his trouble. He was wrong, but that knowledge doesn’t repair the price paid in mind, body, and bank account.
I acknowledge that modern medicine is a great gift and saves countless lives every year. That is not at issue. My problem is with the lives it often needlessly exploits and damages when better resources are readily available but suppressed by a broken system.
THE PROBLEM OF LUPUS
I have Lupus and mainstream medicine tells me that Lupus is an incurable autoimmune disease. The primary care specialist for most Lupus patients is a rheumatologist, and almost all rheumatologists treat Lupus symptoms with drugs that cause short and long term damage to the body in exchange for temporary relief and hope.
Those meds sometimes save a life when an organ is under concentrated attack by friendly fire. But like cancer meds, these life saving protocols do come with a price tag. I often wonder whether the cure is killing Lupus patients faster than their disease.
I’ve spent a lot of time listening to Lupus sufferers talk about their problems. There comes a point (rather quickly) at which the suffering of the disease becomes almost indistinguishable from the suffering caused by the medication.
I didn’t want to go down that road and so I asked questions…
WHY is my immune system attacking my own organs?
How can I get it to stop without shutting down my immune system with meds?
What I learned from daily research is that the body is an awe-inspiring creation and that it does not fire on itself without a reason. I knew that if I could find that root cause, I could find some degree of healing. I will always have the dysfunctional antibodies with me but they don’t always have to be active and triggered. So…
What is triggering my antibodies to attack normal healthy cells?
That’s the million dollar question and I poured a boatload of money into integrative medical professionals and testing in order to find out. Money well spent, I believe.
FUNCTIONAL MEDICINE
I was a model patient walking in the door because I had already laid the foundation for good health over the last 6-7 years which they recommend for every sick person they treat…
I eat a diet free of garbage and inflammatory ingredients. (See how I eat HERE)
I don’t take OTC or pharma meds without a truly grave reason.
I live a healthy lifestyle free of alcohol, tobacco, and other toxic substances.
I have a healthy weight and strive to stay active and minimize stress.
I use gentle plant-based medicine and supplements to treat symptoms and support my body (More info HERE)
I use personal and household products which do not poison my body
I was managing symptoms and disease (multiple autoimmune diseases) through a healthy lifestyle when so many others were becoming dependent on and trapped in a cycle of medication and misery. Some necessarily. Some because they were NEVER OFFERED AN OPTION.
In spite of all of this and in spite of tremendous healing and progress…
My autoimmune flare ups kept coming back, my neurologic issues continued to surface, neuropathy increased, and new problems were added to the mix. When my thyroid numbers went off track for the first time, I got angry…
I am collecting autoimmune diseases. If I don’t get a handle on this, I’m going to die young or become disabled. I’ve got 8 kids… I’m not going to give up the fight.
LEFT: Me, during a flare. Swelling, hair loss, malar rash, severe pain, numbness, extreme fatigue, nausea, migraines, respiratory problems, heart arrhythmias, sun intolerance, heightened allergic response, food intolerance, joint degeneration, etc.
RIGHT: Also me… walking the line between health and illness.
It’s a dimly lit photo so the light was favorable to my lines but… I usually look somewhere between these two photos. This illustrates the extremes to give a better understanding of the middle ground. My face often indicates (even in small ways) what the rest of my body feels like, although it’s generally invisible to others. Chronic illness always falls somewhere on a range of wellness. It’s generally not as simple as “I am sick today” or “I am not sick today.”
So we started shelling out the money to get tested for root causes of systemic inflammation and antibody production. Those triggers generally fall into one of the following categories:
Infections (bacterial, fungal, viral, SIBO)
Heavy metal toxicity
Leaky gut
Parasites
Toxic mold
Chronic stress (which leads to leaky gut and chronic inflammation and dysfunction)
Environmental toxins
Nutritional deficiencies
Pharma, OTC medications, and Vaccines (Don’t freak out, people. These are actually medically known triggers of Lupus. 10% of all cases, in fact, and I’m going to guess that’s a low number since it’s often impossible to identify a cause.)
(I’m going to mini-rant now about how insurance companies will cover brutally toxic meds that only mask symptoms but will NOT cover tests for most of the above. In my case, it was worth the money but it’s been a painful drain on my family’s resources. Financial concern has often kept me from pursuing care. We need a change in the system…. so that patient care is dictated by true patient needs and evidence-based choices, not pharmaceutical companies. Rant over.)
YOU HAVE LYME DISEASE
One of the happiest days of this journey was when I finally learned that the underlying cause of my lifelong autoimmune cascade is Lyme Disease. It was also one of the most crushing days. I am happy to have identified an enemy. But Lyme Disease, with all of it’s complicated co-infections and dastardly elements… well… it’s not the enemy I would have chosen to fight. The initial news brought relief. The days that followed brought confusion and grief.
Regardless, I now have a target and I’m ready to fight.
My case is what is called “complicated” Lyme. The translation is that the professionals don’t really how to help me. In addition to Lyme, I have CIRS, and hypothyroid (new within the last year). I have a body full of disorder and they don’t know what they are fighting, where it is, and which medical options will help without making my situation worse.
For example, certain antibiotics MIGHT kill certain bacteria but WILL cause other bad actors to flourish. Other medications WILL cause a die off of certain bacteria but will also cause the body to become overloaded with toxins and also harm the immune system. Some antibiotics WILL kill SOME microbes but it will cause others to strengthen their defenses....
I don’t have the time or the money for this. Who does?
Protocols talk about alternating and “pulsing” meds to try to help patients without damaging them. They talk about all kinds of things that cause me to alternately hope and cry.
I am faced with a decision: which path will I choose to attack this enemy which has been setting up camp in my body since I was a child? Every single doc has a different approach (because it’s a bit of guessing game) and I’m left with one more question…
IS THERE ANOTHER WAY?
I often run across research showing how certain natural substances destroy cystic Lyme, eat through biofilm, disrupt the inflammatory process, and do things generally better than antibiotics. I have experienced the direct and measurable impact of plant-based medicine and so it’s easy for me to believe from experience (and the science I’m reading) that these things are true. And I’m not going to complain (too much) about how the system is still handcuffed to what Big Pharma is doing and ignores everything else because…
I’m moving on.
My journey from this point is going to be research-based and pharma-be-darned. I will use them when it makes sense but otherwise, will be using an approach which honors the dignity and design of every single cell in my God-given body.
I’m not giving medical advice here. I’m just fighting for my own life and health. If you follow anything at all that I say, you have to do it based on your own belief that it is best for your body and not because I say so. Be your own advocate. Learn about your body and what it needs. Demand evidence-based care and full disclosure of medical procedures, medications, and all possible risks (informed consent).
THE HEART OF THE MATTER
Lyme infections have been around for longer than recorded history and the human body is designed to handle them. It is not the bacteria itself which has suddenly gone rogue, but cultural practices (nutrition, toxic environments, unnecessary medications) that are systematically undermining our naturally efficient immune response.
Our bodies are not broken by design, to be overrun by every common tick bite. Something has gone wrong.
WHERE I GO FROM HERE
My internet dialogue (website and social media) will primarily focus on what lifestyle choices I make in order to keep my body in fighting shape. I earnestly believe that for many of you, those changes will be enough to alter your life for the better in ways you never dreamed possible...
Nutrition.
Exercise.
Managing stress levels.
Sleep.
Eliminating toxins/poisons in your products, food, environment.
Informed self-care.
While I continue to navigate this road, I will continue to share natural wellness, nutrition, and essential oils with everyone I meet. I will also continue to write and share and work on larger products (TBA), and to immerse myself in my family life.
Life is short and I’m not going to lie; during a bad flare, I think about death a lot. What I bring here is a pouring forth of NO-REGRET health care.
“No-regret health care” means that I’m not going to compromise the gift of my bodily health in order to hoard time and grasp at pain-free living. Neither is possible. We are designed to pour out our lives in loving service with joy and holy boldness, keeping in mind always that we are not made for this world.
I have one shot with this body. I have one shot to teach my children about how we are to approach this gift. One chance to do my part to restore proper order to the way we live and care for the body as believers. Because it does matter and is the appropriate response to the gratitude we feel for life itself.
Welcome to my ongoing effort to honor the gift, utilize God’s plan for healing, and lay it down in service.
Thanks be to God!
