Back

Zoe’s Story

Quick Links

Symptoms

Sensory changes (tingling and numbness in legs)

Fatigue

Not able to walk, hardly any strength to speak

Sensitivity to sounds and smells

Fainting (Orthostatic hypotension)

Problems with memory

Pain and colic

How symptoms developed

Soon after I returned from studying in South America, I began to feel that my body was slowly shutting down. I had less and less strength to make any plans, or just to get up from a chair.

The first time I went to the emergency room, I was diagnosed with a kidney infection, and they sent me home with antibiotics.

As the days went by and I took the antibiotic, I felt my body less and less and spent all the time on my sofa at home. One day, when I tried to stand up, I was not able to. I lost feeling in my legs. In addition I started to have sensory problems. Chemicals hurt me a lot, some sounds made me squirm with pain.

After many tests and “small diagnoses” that were not entirely correct, I was referred to aneurologist. One day, when I left the consulting room, I fell to the floor and my blood pressure was low. At that point, the neurologist admitted me to hospital.

 

Getting a diagnosis

In hospital I underwent many more tests, of all kinds, to rule out different illnesses. Also, as I had just returned from South America, I had tests for different viruses and bacteria that live in those countries. But nothing was found.

Eventually, the medical team found something, a trace of Lyme bacteria in a blood test.

Because Lyme disease could potentially explain the symptoms I had, the medical team decided to perform a lumbar puncture to see how widespread the bacteria was and found evidence that there was Lyme bacteria in my brain.

Once I had a diagnosis, a weight was lifted off my shoulders. Not knowing what I had was tearing me apart emotionally.

When treatment for Lyme didn’t help symptoms

After being diagnosed with Lyme disease I had a 3-week round of antibiotics. Unfortunately this treatment didn’t help my symptoms. I had less and less strength and more and more pain, there were days when I couldn’t stand it and I felt completely exhausted.

My medical team decided to give me another second round of antibiotics through a central line on home admission. Once again, the antibiotic left me exhausted and I didn’t feel any better. Through all this, the physio used to come once a day to help me move my body.

The heavy antibiotics had cleared any trace of the Lyme bacteria from my body, but my symptoms did not miraculously go away. In fact, I was now in a worse state following the treatment, and there was little left that the medical system could offer me.

I decided to try alternative treatments and natural medicine. I could tell you a lot about this process, which was also very long… but let’s just say that I was taking 30 pills a day and I was still feeling bad.

 

What helped: making the decision to recover and steady increases in activity

One morning when I woke up, I felt a little better. I was still very ill, but I felt like trying to go for a walk around the block of the building. Little by little, every day for 5 minutes, I went out and tried to lie down for as little time as possible.

I began to feel a bit better and this encouraged me to continue taking those short walks and seeing life in a different color. Now that I am 100% recovered (and so is my central nervous system), I see that it took all the strength my body had left to get me back on my feet. I made the decision that I had to recover on my own, taking advantage of every small improvement, and I set about it.

What helped: understanding that symptoms can remain without damage

My family doctor told me that she had a friend, also a doctor, who was teaching a course in cognitive retraining. As I was still quite weak, my mother was the one who did the course, and when she got home she told me about it and explained everything little by little.

That’s when I realized that the bacteria had already gone. I learned that it is not the same to have damage (for example caused by Lyme bacteria) as pain (symptom).

My symptoms might have been triggered by in response to the infection, but now I continued having pain even though the bacteria was no longer there.

Shows the head and chest of a young woman. Looking down peacefully.

Understanding this gave me the confidence to learn to forget the discomfort (which sometimes was not easy) little by little.

Other people

It was a very long process, in which many people from whom I expected unconditional love began to distance themselves, they didn’t understand the illness or simply didn’t want to worry about it, and they left. That’s when the worst pain started, the emotional pain. Luckily, I have my mother and brother who will always be there for me.

Today I am recovered, working as a social educator (my great passion), and in the happiest moment of my life. I look at life in a different light, and it is wonderful. Today, I only see positive things that the illness has given me, because I have grown as a person and I can be writing this to help people who are going through what I was going through.

Symptoms often persist after infectious diseases.