My husband and I were diagnosed with Lyme Disease in 2014. I enjoy the CDC-approved version of Lyme while my husband has been clinically diagnosed. Since our journey in the world of Lyme began, we’ve learned a great deal. It’s probably something like Flowers of Algernon. In a few years if all goes well and we’re healthy again, our IQs will drop and we’ll be enjoying all the stuff we would prefer to be doing right now.
Upon first hearing a Lyme diagnosis, we were totally relieved!
Easy! All we’ll have to do is take some antibiotics for a little while and we’ll be back to normal! Years of wasted money and time can finally end.
That’s not exactly how Lyme works.
Now, I am not a doctor — I am a designer, finally wrapping my head around what has arrested our lives for the last several years. Since I can only understand things visually/conceptually, I will present my experience of Lyme Disease as the dichotomy it seems to be:
Version A: The Perfect Product
It’s description is concise, easily delivered in a sound bite. It is one little bug that is manageable, marketable, and easy to treat. The required drugs are available with little cost to government agencies, medical doctors, or the insurance and pharmaceutical industries. You can only get it by a tick bite in the Northeastern States of the USA. This is the mainstream Lyme Disease ‘product’ that most of us Americans are familiar with. This is the Lyme product taught at med school.
Version B: The Drive-In Horror Film
With all the makings of a B-movie screenplay, “Lyme Disease” in this instance is code name for a barrage of sinister bugs & evil co-infections, bad medicine, controversial treatment, paid government board members, corrupt policy, conspiracies about nazi scientists and a bio-weapon gone missing, a disaster zombie apocalypse on the horizon, and a handful of International superhero do-gooder doctors. Can they save us?!
In lieu of the Roger Corman version, you can watch this great documentary.
According to Dr. Joseph J. Burrascano, “[Borrelia] is the most complex microorganism known to science.” There are numerous strains all over the world. It is found in every state in the USA. It is found in every country except Antarctica.
It rides with co-infections of a bacterial, viral, fungal and parasitic nature including Babesia, Anaplasma, Ehrlichia, Bartonella, Mycoplasma and others. Each of these can bore into completely different organs causing an onslaught of damage which mimic other illnesses.
Like its cousin syphilis, Borrelia is a spiral shaped bacteria (spirochete) except it’s much smarter and harder to kill. It can hide, relocate, and change shape, while it burrows deep into tissue throughout your body. It knowingly avoids treatment areas and creates biofilms to protect itself from antibiotics. It mimics non-threatening cells so it is not attacked by your body’s natural fighting mechanisms.
Again like syphilis, Lyme mimics other diseases for which there are no known causes: Chronic Fatigue, MS, Lupus, Alzheimers, Parkinsons, Heart Disease, Candida Overgrowth, Gastric Disorders, Food Allergies, Rheumatoid Arthritis, Autism, Psychiatric Illness, ALS, the list goes on. Symptoms are completely different from person to person and range in severity. You can live a relatively functional life and not know you have it for many years. Or you can die from it and Lyme Disease will not appear on your death certificate.
CDC-approved testing has a low reliability rate and was never meant to deliver diagnosis in the first place.
50%-75% of people with “Lyme Disease” never had an EM rash. Only 3–26% of people actually see the tick that bites them. Mothers can pass it to their children in the womb. Like syphilis, it’s an STD (most likely I contracted some bacteria from my husband).
Treatment varies greatly for each person and must be changed over time since the bacteria adapts to whatever is attacking it. Thriving fungal, yeast, and parasitic infections require treatment in tandem. Sometimes treatment is short. Sometimes it continues for years. It can involve oral antibiotics, IM antibiotic shots, IV antibiotics, herbal antibiotics, tinctures, supplements, and comprehensive nutritional support.
This is the Lyme Disease that the CDC, NIH, Medical & Pharmaceutical Industries say “does not exist”. However, people are very clearly suffering from this reality.
If I were the CDC, I wouldn’t want this shit storm to exist either. How does a government agency communicate this to the masses? “There is no known cure.” “Oops, someone left a box of experimental biowarfare ticks outside in the 1970s.” “We have no treatment that will work for everyone.” “Oh, insurance company? Hi, this will probably cost you guys billions of dollars to cover each year and it will only get worse as more people contract the disease because we can’t control it.”
Saying something does not exist may seem to relieve one’s responsibility.
NIH allocates more research funding to Headaches than the CDC’s version of Lyme Disease.
I was not bit by a tick and did not see an EM rash. Having mild symptoms that I believed were simply stress, I would never have thought I had Lyme Disease. Only due to the suggestion by my husband’s LLMD (Lyme Literate Medical Doctor) did I get tested. Thankfully we have one of those superhuman doctors and family, friends and coworkers have very generously pitched in to help cover our on-going treatment. As long and tedious my story here may be, it is a sign that I am getting better — after months of depression, a myriad of weird and scary symptoms, and an anxious fear of talking about what we had.
Some of you may have strange symptoms that seem minor but they are actually signals of Lyme and no one is telling you to get tested — including your doctor. Trust your gut and find an LLMD who will listen to you.
If you’re interested to find out more about this conundrum, here are some great videos by some of the foremost LLMDs.
Feeling overwhelmed by all the complexities of the disease and its surrounding politics, I started Lyme Stats. I am using design to visualize the latest Lyme Disease info from noted sources: NIH, CDC, LLMDs, scientific papers, ILADS, lymedisease.org, etc.
My story is not meant to offer medical advice. I simply hope to increase awareness of this silent epidemic that is going on beneath our noses. The politics surrounding Lyme by governments worldwide are directly: 1. enabling suffering and death, 2. costing over a billion dollars in misdiagnosis and treatment, 3. reducing our workforce by misdiagnosis-driven disability, and more. All when there is clinically proven treatment available.