Surviving Lyme Disease

It was the scariest health crisis I’ve ever had, and I’m still left frightened over the longterm outcome.

The disease must have crept up on me, covertly and sneakily, without any of my conscious awareness — because I did not see it until Stage 3, when the bacteria had already attacked my joints to the point of immobility.

• Stage 1: This is characterized by a rash known as “the bullseye rash” which I did not ever recall having.
• Stage 2: Around 20% of Lyme disease sufferers reach the second stage, which include these symptoms: “flu-like symptoms, lymphadenopathy, arthralgia, myalgia, palsies of the cranial nerves (especially CN-VII), ophthalmic conditions, and lymphocytic meningitis. Additionally, cardiac manifestations such as conduction abnormalities, myocarditis, or pericarditis may occur.” (Source)
• Stage 3: This comes with arthritis of large joints, commonly knees.

Lyme diseases progresses anywhere from months to years. And again, it wasn’t until Stage 3, when I knew that something was very wrong with my body.

It was the summer of 2020. My knee blew up twice its size. I blamed it on moving, I blamed it on work, I blamed it on excessive physical labor and stress. I told myself it would pass. I happened to have off work that week, so lucky enough it was easy for me to spend the entire week in bed. I debated seeing a doctor, but walking down the stairs was too much of a struggle, so I convinced myself that it would pass after enough rest.

It did pass. And then it came back two weeks later, in the other knee. It was red, it was hot, it was swollen like a balloon. This time, I was at work, which made it far more difficult to hide. Everyone could see that something was wrong with me.

• I felt shame. I felt like something was wrong with me, like I was defective and broken.
• I felt embarrassed as everyone was staring at me, expressing their concern, asking what was wrong with me — noticing me limping around, gripping on the wall to keep me standing upright, moving slower than molasses.
• I felt judged as if people were assuming I was “faking it” or being dramatic, when in reality, I was trying my absolutely hardest to pretend I was fine. I felt paranoid that people assumed I was seeking attention when it was just the opposite.
• I felt scared because my body was breaking down on me and I had no idea why. I thought I might become handicapped for the rest of my life.
• I felt betrayed by my body. I thought my body had given up on me, no longer fighting to keep me healthy and alive.
• I felt confused about what was happening, why it was happening, how long this would be happening.
• I felt powerless as I lost the ability to do basic human functions that I take for granted.

After a week or two, it passed. Somehow, I put on a good enough show for my coworkers to believe that I was not sick.

A couple weeks later, and it was back. It kept on coming and going, like a toxic relationship. It came for my wrists, and then my ankles, and then my jaw, and then my back… one joint at a time.

I can’t believe how good I was at hiding it — for the most part. It affected my ability to walk, to eat, to open lids… and this went on for over a year, from June 2020 until August 2021.

Finally seeking help

Finally, with a severely swollen ankle, as I could not walk from my kitchen to my living room without crying, was when I decided to first seek help. I drove to Urgent Care where my doctor gave me a diagnosis of autoimmune disease: Rheumatoid Arthritis.

The Urgent Care doctor told me to seek a Primary Doctor. The Primary Doctor was not available for another month or so, at that point in which my symptoms went back into hiding. My primary doctor completely undermined my experience and suggested seeking a foot doctor — even though I specifically told her the incidents involving my wrist, jaw, back, etc. Instead, I sought a Rheumatologist, which would be another long wait.

By the time I got my appointment, my arthritis was completely dormant. It was as if the Lyme disease, or the infectious bacteria, was a conscious entity that knew it was about to be discovered. It was as if the disease purposely went undercover when it knew it was about to be exposed. It was as if the disease was alive, aware, and trying to defeat me.

Fighting for a diagnosis

The Rheumatologist practically laughed at me when I showed up to my appointment with no active symptoms. All I had was a story — and that story came with tears. The tears came rolling down my face as I explained to her my experience, vivid flashbacks of all the upsetting emotions I faced during my arthritic episodes. Only at that point, did she begin to take me seriously.

I had bloodwork done and tested negative for RA. I had to keep pushing for answers. I got a second round of bloodwork done which now included Lyme disease — and there it was — I tested positive. (By the way, it takes at least months of infection for it to show up in your blood.)

I was put on treatment for a month of daily antibiotics. Every few months, I came back to the doctor for updates. She told me that if I had another severe episode that I could come in for an emergency appointment.

It has been one year since I was officially diagnosed with Lyme disease, and one year since I was treated with antibiotics. Following treatment, I only had one incident of arthritis in my foot around wintertime, but it was much lighter than prior episodes — and since then, I have had no arthritis.

I have been “symptom-free” for almost a year now. But there is a reason I put “symptom-free” in quotations. I am not out of the woods.

Post Treatment Lyme Disease

The CDC states that many patients can feel long-lasting affects after treatment — this phenomena is so common that there’s a name for it: Post Treatment Lyme disease (PTMD). There is no known cure for PTMD.

Lingering affects include pain, fatigue, and difficulty thinking. It can cause flulike symptoms.

What worries me is that, if I was unable to identify Stage 1 and 2 of Lyme, then how can I properly understand if I am suffering from PTMD or not? Am I disconnected from my body or a victim of wishful thinking, to breakdown that severely without acknowledging it?

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I’m surviving

Lyme disease is becoming more common in recent times. Celebrities such as Avril Lavigne, Justin Bieber, and many more have reported to have gotten infected. And yet, there is hardly any research on its longterm affects, and doctors are not as aware of it as they should be.

Through this process, I’ve learned to take my health more seriously and seek out help when necessary — even when you have to fight for doctors to take your health seriously. I’m continuing to do my research and try my best to stay aware of symptoms.

Do you have, or know anyone who has, experience with Lyme disease?