Our Daughter and Lyme Disease

Lyme Disease has changed everything for my family. Our teenage daughter has been very sick since 2018. She became increasingly ill over a period of time with strange and seemingly unrelated symptoms, something most Lyme patients can relate to.

School would call us and say *Anna was feeling faint and dizzy, that she had a migraine, or her heart was racing and she was nauseous, sometimes it was that she had severe pain in her legs, and other times it was that she could not see properly. After several visits to the hospital, she underwent tests which included blood work, MRI scans, and monitoring equipment. They all came back ‘normal’.

We were told Anna had chronic fatigue syndrome.

Her health continued to deteriorate, school attendance became less frequent and a few months later, she required a wheelchair to get around. Shortly after that, her symptoms became so severe that school was no longer a possibility.

Jumping six months ahead, after a lot of research, we had located the right doctor, received a clinical diagnosis and the correct testing, and were informed Anna had Lyme Disease, Bartonella and other co-infections. She was very sick indeed.

The clinic is a four-hour trip from our home in Cornwall but it was worth  every minute of the journey, to finally be heard and to receive the necessary support.

Anna was always such a sporty and active girl…

Six foot tall and a keen rower, netball and football player, a member of the local Girl Guides, helper at the Brownies… she played the flute and violin. She was part of the leadership of the Girls in Sport Programme at school, and was the highest of flyers academically (in top sets), showing a keen interest in engineering and science. Yet, what felt like over-night, she had to stop school, lost her friends, her clubs and her social life.

Now, she’s homebound and has to spend most of her day lying in bed.

She requires a lot of medication, various therapies and a lot of time with her (uncool!) parents. She is in constant pain, has no energy, has to remain in the dark, in the quiet, with terrible brain fog and a whole host of other symptoms.

Understandably, her mental health began to decline as quickly as her physical health. She lost 46lb in  weight, was very pale and struggled to talk. She was so sad, so weak, so quiet and her thought patterns were concerning. The clinic she attends has a psychologist trained in chronic illness so Anna started to see him via Skype. This has been one of the best things we have done. Anna has gradually come out of the dark place and she continues to work with the psychologist every week.

We would advise any parents to get mental health support for their children as soon as possible.

It is just as important as the medicines and supplements they need. Today we continue with new treatment plans, working alongside our doctor, and we do as much as we can to try and make Anna’s days a little bit better.

We are constantly researching new ways to address the pain and the other symptoms and never give up hope.

Some days we can see small upturns which give us a lift and we know that we will get the better of this awful disease. But then, other days we crash back down again and wonder if it will ever end. It really is a rollercoaster of a ride. Our plan is to aim for 50% good health for her just enough to be able to get her out of the house, to enjoy a sniff of the Cornish countryside and for one day to let her be the teenager she deserves to be.

We send strength and love to all other parent warriors and their children.

The Marsh family, Cornwall.


*The name Anna has been used as the Marsh family wish to remain anonymous