To the NYTimes Writer Who Said Lyme Disease Was 'Easily' Treatable
Dear Apoorva Mandavilli,
When I heard there was an article in the New York Times about Lyme disease, I immediately grew excited. “Wow,” I thought. “All of our hard work this past May during Lyme Disease Awareness Month must have really paid off!”
I opened it up on my computer and the light in my eyes immediately died. The title read: “My Son Got Lyme Disease: He’s Totally Fine.” The tag line: “Horror stories about lingering Lyme disease proliferate, but the illness is easily treated.”
OK, OK, OK, I told myself, let me just hear her out. And as I read your article I understood that you wanted to quell many parents fears about a Lyme diagnosis.
Yet, what crushed me about your article was the statistical information and quotes you chose to support your own story. You see, many of the facts and statements you included in this article to prove how “easy” and non-threatening Lyme disease is have been used by others to devalue, silence and isolate narratives like my own. This makes diagnosing and treating many cases of Lyme disease extremely difficult — making the healing process far from easy.
Before I continue I would like to say I do not think you intended to offend or hurt anyone by publishing this article. Furthermore, I am happy to hear that your son has been easily treated and cured from Lyme disease. I would not wish my experience on anyone in this world and am glad that he is able to return to his life.
Yet, for many of us struggling with this disease, nothing about it has been easy. And if lucky, remission might be the closest thing we get to in terms of “being cured.”
So, in hopes of helping you understand why your article was so emotionally triggering for me, I wanted to share a bit of my story, and why the facts you’ve shared have made my experience far from easy.
Like your family, I have also had my own share of (mis)adventures in receiving my diagnosis. Like your son, I did not have the words to articulate many of my symptoms clearly. My joint pain, intense back spasms, migraines and fatigue were minimized as being the result of stress and over-activity. You see, I never had the bulls-eye rash, nor have I ever had the swollen knee symptom thought to be characteristic of Lyme disease.
Conflicting information exists online about Lyme disease. While the CDC reports that about 70 to 80% of individuals diagnosed with Lyme disease present the bulls-eye rash, according to the Canadian Lyme Disease Foundation (CanLyme), only 30% of Lyme patients report experiencing a rash — and many Lyme Literate doctors who have hands on experience with patients support this statistic. For those who don’t get a rash, like me, this is where things get complicated. If left untreated, the infection can lie dormant for weeks, months and years before manifesting into more debilitating symptoms.
It took me 15 years to receive a diagnosis. During much of that time I learned to mask my symptoms and live with them. Yet a couple years after graduating from college it became too much. One morning I just couldn’t get up… I just couldn’t keep going. Yet the doctors were still telling me that my symptoms (and this time they included unexplained intense nose bleeds, panic attacks, blurred vision, fainting spells, general weakness, disorientation, memory loss and debilitating tendonitis) were psychosomatic.
Early detection of Lyme can make a world of difference in treating the infection. Yet what happens when our symptoms do not line up with what the CDC and many health officials identify as “Lyme disease symptoms”? Many of us with late-stage Lyme have a whole encyclopedia book of symptoms ripping our bodies apart that mainstream health institutions and media continuously devalue, dismiss and ignore.
So no, it has been anything but “easy” to go through this experience. Even after receiving a diagnosis, which was possible because my mother helped me pay $2,000 to have my blood sent to an advanced testing center in California (not covered by insurance) where the results confirmed what my Lyme literate doctor hypothesized — that I had late-stage Lyme with the co-infections Babesia and Bartonella. When we have misinformation and a lack of awareness about Lyme disease, we will also have misinformation and a lack of awareness, support and funding for these other co-infections, which can also be deadly.
It has not been easy to watch my mother have her own panic attacks about finances with all of these out of pocket doctor’s appointments and treatments, as insurance companies refuse to cover various long-term treatments for Lyme.
It has not been easy to have to choose cheaper treatment options such as oral antibiotics instead of IV antibiotics and have my stomach and intestines ripped apart. I now have a food allergy to almost everything; my diet consists of maybe a handful of foods that I am able to handle.
It has not been easy to not know how my body will react with each new herbal protocol, detox session and antibiotic. When Lyme and co-infections die, they emit endotoxins that can be even more toxic that the disease itself — this is known as a Jarisch–Herxheimer reaction (aka herx). I had dangerous seizure-like episodes, hallucinations, air hunger and even lost the ability walk and even talk at one point due to these herxes.
It has not been easy to be denied disability benefits as the CDC continuously undermines the disease that has completely destroyed my life. To watch my 20s slip away year after year, to have to change my plans, set different expectations for myself and be financially broke and in debt as my peers and friends begin to settle down, grow in their careers, and start families.
It was not easy for me to live back at home, to sit in my room weeks at a time not receiving phone calls or visits from a majority of friends and family because they couldn’t understand what was happening to me… to constantly have to educate others and defend myself on what it means to be sick with Lyme for so long — including therapists helping me with my current post-traumatic stress disorder (PTSD).
No one could wrap their heads around my experience. And the more I tried to speak my truth and explain what was happening to both body and mind the more people looked at me like I had three heads.
Because as far as they knew… Lyme was curable, Lyme was easily treated… with a 30-day supply of antibiotics.
Finally, it is not easy having to write and rewrite this letter over and over again, witnessing the neurological damage that still plagues my brain even though I am nearing remission. Or so that’s what the LLMD believes. I cannot afford to get another test done to prove this and am working to be at peace with the idea that remission means keeping my symptoms at bay. I have long processing lags, memory issues, problems concentrating, near constant brain fog and aphasia.
You see, it’s all in the way that information is shared and published about this disease. Early detection is a reality only some people with Lyme disease experience. In order for late-stage Lyme disease to be taken seriously we have to agree as a society that there are various stages of the disease and each experience and stage is just as valid as the other. Furthermore, people with chronic Lyme are not the small percentage that your article presents.
My intention is not to invoke fear but simply to share the truth of my reality, to spread awareness and receive support while I go through this hell. I don’t want others to have to go through this which is why funding, research, education and protection is extremely important.
I hope after reading this, you can understand a little more why this article is so triggering for me and many others who have had their experiences repeatedly silenced and devalued by a lack of awareness and misinformation that circulates on physical and mental illnesses. Everyone’s experience in healing and health is vastly different and it’s important not to invalidate one narrative in order to validate another. I hope that next time you share your son’s story with someone you can take a moment to think before speaking and hopefully use that exchange to also spread awareness and understanding about narratives like my own, from people who have not been so lucky. For others reading this article, who have been silenced and devalued in their own experiences:
I hear you, I see you, I am here for you, and I support you in your journey. What you experience is real and what you feel is real. I have met such courageous and inspiring warriors though this experience, and I am eternally grateful to you all for supporting and empowering me along my own journey of fighting through this confusing, traumatizing, complicated and wildly misunderstood disease.