Table 1 Participants’ repertoires of CLD experiences

Late diagnosis

If only someone had taken me seriously earlier and diagnosed/treated Lyme, things would not have gotten out of hand.

Abandonment

If you’re diagnosed with Lyme, you’re on your own.

Loss

I have to accept that am not half the person I used to be before chronic Lyme.

Unpredictability

It keeps coming back when you least expect it.

Lack of understanding

There are few professionals who understand me, only other chronic Lyme patients truly understand me.

Need for a holistic view

Finally, a doctor looked at the complete picture.