Would my son have his Lyme disease diagnosis without my mother’s instinct? It’s time we trusted our patients

My battle as a parent against Lyme diseaseSource: Science Photo Library

For eight years, my son has been fighting a war against Lyme disease, with me alongside him.

I have endured countless sleepless nights, anxious that I am pushing too hard, but more troubled I have not done enough; fearful of backlash from respected colleagues over antibiotic prescribing, yet utterly convinced that doing nothing is no longer a viable option.

I have waged battles against countless healthcare professionals who failed to recognise the severe consequences of a missed diagnosis, inappropriate treatment, and worse: telling a patient it’s all in their head. (See link for article)



To answer this mom’s question, “No, your son wouldn’t have his diagnosis without your mother’s instinct and advocacy.”

Thank God for moms!

This story plays out over and over ad nauseam, unfortunately.

The son of this pharmacist went from an active, healthy boy to being bed-bound at 25.  He developed blurred vision, twitching painful muscles, insomnia, headaches, panic attacks, nausea, painful soles of his feet, low mood, severe fatigue, breathlessness, and more.

Bone-heads prescribed him antidepressants….

Test results for Lyme were negative – which is very, very common.

Thankfully his clinical psychologist agreed that this wasn’t ‘just in his head.’ But the infectious disease specialist felt is was chronic fatiguenot Lyme.  This too is very, very common.  In my experience infectious disease specialists are the worst, and are so closed minded it’s a waste of time trying to work with them.  

This statement is probably the Lyme/MSIDS motto:

I knew, then, we were fighting this battle on our own.

Again, expensive private testing showed numerous tick-borne infections.

All of this is an acute reminder that Lyme literate doctors (LLMDs) are the best choice for diagnosis and treatment. They have open minds, experience, and training for this despite the continuing effort of main stream medicine to malign them as ‘quacks’.  This is also another great example of complete and ongoing polarization within the medical community – much like we are seeing with COVID. 

Arlene Brailey is a pharmacist and trustee of the Lyme Resource Centre