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By Annette Sellers

When I first started participating in the LDAA’s online support group, some years ago, our youngest daughter was still living at home with Lyme and multiple coinfections, missing high school and only able to engage in the world in a limited way.

Our journey followed a similar pattern to others who have shared their stories, with things deteriorating over eighteen months while searching for treatment.

We adopted a multi-disciplinary approach, with natural therapies used to build strength while we fought for doctors to treat her. We received direct help from Dr Nicola Ducharme (in person in WA and online as she is based in the USA) and a Perth practitioner. We had help from some brave practitioners who experienced disciplinary action for diagnosing and treating Lyme. Our daughter’s infections started in 2013, so it has been a long journey.

With Bartonella medications and complementary therapies already on board, the breakthrough in our journey came from Bicillin injections.

I hated the injections, which I had to give from home for a period of time as we live in regional WA and no one would “treat Lyme”. This included refusing iron infusions and the like for anaemia until we could find a practice willing to administer the treatment under the written guidance of her Perth doctor. I became paranoid during this period; the world felt very hostile, from medical practitioners to the government. This fear led me to disconnect from friends and other places where I might have found support, and it took a long time to overcome and re-engage. LDAA was a great help reminding me that we were not alone.

Once we had Bicillin in the mix, our daughter’s memory and energy slowly returned. It was a very long way to recovery. At one point we stopped the medicine too soon, watched her decline across another twelve months, and had to rebuild all over again. Our daughter’s courage during this time is a constant inspiration to me now. It was such slow progress, including getting mobility back after years of nausea and chronic fatigue. While her contemporaries were getting their driver’s licenses, we were buying a mobility scooter to allow a sense of independence. For a while, it didn’t get much use as she couldn’t sit up for long. Eventually, she was able to take herself to lectures for a bridging course to tertiary admissions.

During the same period, she joined Headspace, first as a client, and then as a youth representative on the Board. And Improv – a creative social group that allowed her to find her voice and creativity again, with peers.

Throughout the final eighteen months of her seven-year illness, our beautiful girl still needed massive amounts of rest and special care with diet and detox regimes. I took my lead from Dr Nicola’s books and Skype appointments to stay in an environment where our “abnormal” was routine and extensively tested. One of the things that made me paranoid was the constant refrain from medical media, “We don’t know the long-term effects” (of whatever Lyme treatment was being discussed on TV or in a magazine).

I was shocked to learn from one of the nurses delivering the next round of injections, that Bicillin has been used for many years to treat children for rheumatic fever, until the age of twenty-one. You would think the long-term effects would be clearly established. All of the medicines we used are in WHO’s recommended 100 medicines (for a government to provide for its people) list. I find these details hard to let go of, and easy to obsess about, and am coming to terms with accepting that it’s been a journey for all of us, not just the patient. Sometimes the carers need a healing journey as well.

Our daughter’s turning point came as everyone went into lockdown for COVID. She got up, walked outside and said “I feel like going for a walk.” I think I said, “Take the dog.” It was an enormous moment. Then Lockdown was announced on the evening news. Being regional was an advantage in this regard, and her journey progressed steadily from there.

After a year of studying from home, our beautiful girl was able to move to Perth to study part-time on campus.

We had our permits and travelled in convoy with her, through the COVID checkpoints on the outskirts of Perth.

She drove herself and kept the fold-up mobility scooter in the boot of her car for several years in case her legs deserted her due to potential chronic fatigue or nausea ambush.

I write to share this because recently we celebrated our daughter’s graduation from university.

She initially wanted to pursue a health career, but spent so many years unable to do more than read (I know some people are too sick for even this pleasure) so she changed to publishing and is now holding down two part-time jobs in her industry. It is a joyous time for us.

It is also a time for gratitude. I am writing to all who supported us, including this group. I hope it helps to know treatments can work with long Lyme, and people can get better. Holding that belief and feeling invisible for many years was a struggle for us. People who were generous enough to share their stories and Lyme artwork in books, online and with the LDAA made a difference to us. And we hope anyone still fighting this illness will gain a little strength from our story in the same way.