Patient Perspectives on Lyme Recovery and Remission

People who are diagnosed and treated promptly often make a complete recovery from Lyme disease without any long term symptoms.  For those who are at the start of a treatment journey following a late or missed diagnosis, hearing about patients who have regained their health or made improvements from late Lyme disease and co-infections can provide a real sense of hope .

It is often remarked upon by patients in our Online Community that there seem to be very few recovery stories around. Patients can sometimes be reluctant to share details of their illness and treatment. To unpick some of the reasons for this, we discussed with some recently recovered patients as to why this might be. This is what they told us…….

photo of person helping other person climb a hill

Firstly, of course it is very personal. It can also be traumatic to relive a difficult or protracted diagnosis especially regarding a disease that has so much controversy surrounding it. The urge to turn their back on the whole experience and move away from Lyme forums and anything to do with the disease can feel like an important part of healing mentally and physically. It can be difficult for even those closest to us to believe or understand the impact that the disease and treatment can have. Sharing details with strangers can be daunting.

For some patients there is also the fear of relapse and not wanting to be premature in sharing the news that they are feeling better.  There is also the worry that other sufferers will understandably ask questions about treatment and those who have recovered may not want to feel responsible for other patients making treatment choices based on their individual experience. The stakes are high and with no universally accepted or recommended treatment protocol it can feel like a burden of responsibility to publically share what has worked for them.

By providing the anonymous online form below, we hope to encourage more recovered patients to feel comfortable in sharing their progress. We plan to share a collection of these submissions in an article on the LDUK website early this autumn.

Recovered/Improved Patients – Please share your recovery highlights and help to spread hope to those currently struggling with symptoms and finding it difficult to see healthier times ahead. You can complete and submit the form as often as you wish.