Last week, the National Academies of Science, Engineering, and Medicine (NASEM) brought together research scientists, advocates, and others to look into the question of persistent Lyme disease. They discussed such questions as: What is known and unknown about it? How can we devise better ways to diagnose and treat it? And what about co-infections?

In a significant move, the NASEM committee chose Rhisa Parera, a Lyme patient/advocate, to deliver a keynote address to the group. Here is a transcript of what she told them.

My name is Rhisa Parera. I’m 34 years old and I’ve been dealing with Lyme disease for almost my entire life. Around seven years old, I started having physical symptoms. Pain in my knees, spine, and hips. I had very vivid nightmares, that there were bugs crawling under my skin or that I was in a room full of bugs with the walls closing in on me.

In high school, I started suffering gastrointestinal issues and a few years later, in college, debilitating neurological symptoms. That’s when my life really started going downhill.

I was lightheaded and dizzy almost every single day. Just being on the subway, I had to keep my eyes closed and couldn’t walk close to the edge of the platform for fear of falling in.

I continued going to my primary doctor. He sent me to every specialist in the book, for a year. I did a ton of blood work and so many tests I can’t remember all of them.

Diagnosed with depression

Eventually, I received the classic depression diagnosis. In 2010, I started antidepressants that I am still on to this very day. I have been on four different SSRIs at each dosage. It is still hard to try and wean off of them, even after multiple antibiotic and holistic treatments.

I remember getting off the train at Grand Central Station one afternoon, waiting at the edge of the platform, and contemplating jumping in front of the next train, to end my life. I believe it had been two years of neurological symptoms at that point. It took eight more years to diagnose the throbbing pain in my skull, which ended up being brain inflammation and occipital nerve damage.

In total, it took about 20 years for a Lyme diagnosis and with that I was prescribed four weeks of doxycycline and left in the dark. I ended up purchasing antibiotics through a veterinary site, since I couldn’t find a doctor to help with my symptoms, before learning more and finally working with an LLMD–a Lyme-literate medical doctor.

With that, comes a lot of expense. For the average person, an LLMD is too expensive, though it seems to be the only way to improve since they are usually the only people who take us seriously.

The only reason I was able to improve is because I had the luxury of living with my mother and not working for a while. Depending on the severity and amount of time the infection is in your system, and if you add in co-infections, it can be impossible to work. For a huge portion of us, not having the ability to rest and let the body recover, there really is no hope in going back to a decent quality of life, if you’ve even had that before.

I’ve been told Black people don’t get Lyme

There is definitely a huge issue when it comes to affordable treatments, but it’s impossible for many to even receive a timely diagnosis.

I don’t share my Lyme disease history with other doctors. It’s pointless when you have those who will laugh at you, say you’re fine if you were treated, or just deny the disease completely. I’ve even had a doctor and quite a few Lyme patients tell me, “Black people don’t get Lyme disease because we are all poor, live in public housing and cannot afford to travel.”

When we include the added barrier of experiencing this disease as a person who is not white, it feels 100 times more difficult to navigate the system. When I started getting involved with more Lyme patients, I recognized the lack of representation and noticed many are scared to speak.

I know the reported number is close to 500,000 cases each year, though I doubt those numbers include many Black or other people of color. My assumption is that many are incarcerated due to violent crimes that may be attributed to infections in the brain. This disease can make you feel some wildly intense emotions and uncontrollable rage, which I, myself, have  experienced.

The topic of treatments for me is complicated. Doctors need more education on the topic, beyond the acute phase. I feel many do not like the gray area we tend to live in. Many patients struggle with doctors believing we are experiencing so many symptoms at the same time or that they can change constantly. We are called attention seeking, when technically we are seeking YOUR attention and labeled the problematic patient.

Trust me, we don’t want to see you that often either. We are complex. It’s not just a test, write a prescription and we’re out the door. And that is where the disconnect is. I know the issue with insurance and length of time of appointments comes into play here. (Just throwing that out there because I get it, it’s an entire system that needs work.)

Winning the lottery?

Diagnosis takes so long that by the time we figure it out, we are on our last leg. By the time I received my positive western blot, it felt like winning the lottery. Many patients know what I mean by that. I could barely walk down the street without needing to catch my breath. I went from doing high intensity training workouts to struggling up the stairs.

When your body is in such bad condition, where many organs are struggling to work, your diet is limited, and you can barely function cognitively, there are a lot of factors that need to be addressed.

I know many patients who are in terrible condition and are being prescribed strong antibiotics with no probiotic or anything to protect the gut or manage other symptoms. Their bodies are not strong enough to tolerate the meds that they are given and then everyone is scratching their head as to why they haven’t improved.

Herxing

You cannot just go for the kill so aggressively when the body is in such sensitive condition. It’s better to strengthen the immune system to get the body strong and then kill bacteria to tolerate the misery that will come during die off.

I feel that something the majority are not familiar with is herxing. The intensity of symptoms sometimes when bacteria is dying off can make you feel like you are going insane. At one point I was talking to someone in my room who wasn’t there. I was continuously throwing up for a week straight. It’s not an easy experience.

Had I not known what herxing is, I would have continued to think the antibiotics were making me worse, while what I had to do was go through the fire and continue to detox, until it passed, take a break and then repeat a few rounds.

Though this is a very different experience for each patient and we all need to be addressed to our specific needs. Nothing about this disease is one size fits all. So every time people asked how I got better there really is no good way to answer.

I think the road to finding accurate treatments is to first focus education on testing, diagnosing and what happens when these infections are left untreated. The severity is still not taken seriously.

We need this to be taught in medical school. It’s a literal emergency. Patients are dying from lack of attention and care and taking their lives everyday, some with assisted suicide and euthanasia, because there is barely any help and we continue to lose hope. We need something to be done, now.

In 2021, Rhisa Parera wrote, directed, and produced the short film “Your Labs Are Normal.” It’s based on her personal experience with Lyme disease. Click below to watch it.