By Trae Vassallo
The most embarrassing moment of my life: collapsing in front of all our CEOs at our annual CEO summit. That moment started a health nightmare for me. Most people do not talk about their illnesses publicly. They do not want to seem frail or broken. I am healthy again and mad as hell. So I am talking and I am talking loudly.
The medical system failed me. It told me I was a working mom in a high stress job with three kids, and that I should expect to feel like crap all the time if I really thought I could do it all.
As the years progressed, I went from having excruciating fatigue that required 10+ hours of sleep on the weekends (while being completely deprived of that “rested feeling”), the constant feeling like I had the flu combined with morning sickness, breathing difficulties, aching joints and piercing headaches, to ultimately degrading to the point where I was losing my vision, my voice and was beset with annoying muscle twitches. I went from being a healthy athletic mom to a shell of myself. It really hit me when my 11 year old told me I looked frail.
My diagnosis: Borrelia Burgdorferi (commonly known as Lyme), Erlichia Chaffeensis, Anaplasma Phagocytophilum, Mycoplasma Pneumoniae, and Bartonella. Turns out that Lyme is not just Lyme, it is typically accompanied by a whole grouping of diseases that work together to make it that much worse on the patient. I had previously met with many, many doctors in search of some relief. I tried a year of anti-virals for Chronic Fatigue with no avail. I tried 3 months of anti-fungals. Despite all these attempts to see what might help, no doctor would prescribe more than a week of antibiotics. And this was despite knowingly testing positive for Mycoplasma Pneumonia for at least 9 months.
The unfortunate thing is that I, and more importantly, my family suffered for seven years prior to this diagnosis. Most people had no idea what I was going through personally or at home. You do not drop dead from Lyme, instead, you decay over many years. Lyme symptoms look different from person to person depending on where the spirochete (the Lyme bacteria) decides to set up shop. Lyme can affect your digestive track, your nervous system, your coordination, and many other things.
The fear of prescribing antibiotics made them really hard to get. My doctor even told me that he did not want to prescribe antibiotics because I could get C-difficile. I do not want to belittle how horrible C-difficile is, but everything about my life was crumbling. Do I want to go blind or risk C-difficile? My doctor insisted that nothing going on in my system was from an infectious process. Furthermore, I was irritated by the fact that we give our cows and pigs antibiotics daily, yet I can’t get my doctor to see if that helps me.
Despite all of my frustration it was not my own motivation that caused me to seek out a Lyme-literate MD (known as an LLMD), it was my son. My son started regressing from the smart, caring 1st grader to a defiant kid who appeared to be losing his cognitive ability. Watching my child go through this was heart-wrenching. I tried everything. We became Gluten free, got rid of all artificial colors/flavors, changed all the product in our home to all natural. I knew something was not right, a mother’s sense. While my pediatrician brushed my concerns off, I kept pushing. I brought him to a holistic doctor who diagnosed him with PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections). PANDAS is a strep infection that can cause a whole host of behavioral and nervous system issues. We gave him a course of antibiotics, but the strep did not go away. In meeting with another family suffering through a similar experience, the mother handed me a paper that linked PANDAS to Lyme. I sought out a Lyme Literate MD (or LLMD) to have him checked out. On a whim, I decided to test myself since I was there.
We were both positive for Lyme. I was duly warned, by my pediatrician and my doctor, that LLMDs are “quacks.” Having exhausted all my other options, I decided to take a data driven approach. I knew the tests were not 100% accurate, but I had something. So I paid meticulous attention to symptoms and how they changed with treatment. I even went so far as to start and then stop treatment to see if there was simply a placebo effect in place. It was this test that pushed me over the edge from a skeptic with no options, to a believer. After one month of antibiotics, it took only one week of stopping them to see the symptoms start to creep back. My vision that had returned, rapidly declined, my gums that were finally healthy again, started to bleed. My son went from calm to agitated and vibrating with too much energy. After a week, I could not take it any longer and we re-started our medication.
I am over the moon that we are both back to our old, happy selves thanks to some incredible forward thinking treatment by doctors, many of whom currently have to risk their licenses to treat this illness. My son and I are fortunately part of the 75% of people for whom the treatment appears to work.
Why is this so hard? The insidious thing is that current testing is simply not effective. I am not a doctor and I am not a scientist. I am a technology savvy, advocate mom. When I learned that the standard Lyme test was based on one genetically modified specimen of Lyme that was not even from an infected human, it was pretty obvious to me there was a reason that Lyme appears to be rare. There are many, many strains of Lyme with California Lyme strain being different from the Southern and Eastern strains. And Lyme evades the immune system by mixing up its genetic make-up. That makes Lyme very difficult to diagnose. It also leaves the blood in search of tissues in the body to invade. Rarely do tests find spirochetes (the type of Lyme bacteria) in blood, but they are in the tissues. Lyme is not new, it was recently sequenced out of a prehistoric caveman. So why is our medical system hiding its head and putting the many ill people with Lyme on an endless journey from doctor to doctor without a diagnosis?
Part of this is the outdated information disseminated by the CDC and the IDSA. It clearly says on the CDC website that: “…. this disease does not occur nationwide and is concentrated heavily in the northeast and upper Midwest.” A local foundation focused on Lyme has found that 5% of the ticks in the San Francisco bay area test positive for Lyme. Yet many people believe that Lyme doesn’t exist in California. The CDC goes on to explain that: “The National Institutes of Health (NIH) has funded several studies on the treatment of Lyme disease which show that most patients recover when treated with a few weeks of antibiotics taken by mouth.” The Lyme spirochete reproductive cycle is 30 days, so basic biology says that a few weeks of antibiotics is not enough. My doctor claims that 75% of his patients go back to a non-Lyme state. The average treatment is longer than 1 year. We treat tuberculosis with 1 year of antibiotics, so why should it be so crazy to do the same for Lyme?
Last year, I was at a Silicon Valley event for some of the most influential women in Silicon Valley. I collapsed outside, hit my head and sat there disoriented for 10 minutes. Fortunately, that part of my life is behind me and now I know that it is not my crazy desire to be a mom and have a career, but an insidious illness. That shouldn’t happen to anyone, but my story is all too common.
I have since been talking loudly about my illness and my recovery. I am a fighter and it sickens me to know how many others are suffering in silence. I also know that since I have been diagnosed, I have helped an incredible number of family and friends also receive diagnoses. My brother’s fatigue and stomach problems, Lyme. My mother’s 15-year cough, Lyme. And most recently, my three year old who was was having issues with her legs, Lyme. Which leads me to my hypothesis that Lyme disease is likely much larger than anyone really realizes. Everyone knows somebody with Lyme, they just don’t know it yet.
**The views expressed in this article are purely personal views. I am not a doctor or a scientist, just a mom on a mission to get her family healthy again.