I would like to thanks all the respondents for their participation in my questionnaire. I hope that by collecting and disseminating this information it will illuminate the struggles faced by the children and youth with Lyme. The median age of those who replied was 17.
When asked to choose three symptoms that were most problematic, 62.5% reported that they suffered most from neurological symptoms including memory, concentration, and speech or writing problems. 57.5% selected, “muscle/skeletal pain in muscles or joints, swelling, stiffness or lack of mobility, no strength” as highly problematic. 37.5% deal with a variety of neuropsychiatric presentations from anxiety, depression, irritability, OCD, Mood swings, and confusion. 40% of children with Lyme are living with fatigue as a normal part of their reality.
When it came to questions about their treatment experiences, 70% of those who responded tried antibiotics, and 60% have used herbal remedies in their treatment. From the results, it appears that 30% continue to use of some variation of antibiotics/herbal/combination therapy, while 45% treating are doing something different. The reasons for a change varied, from intolerance to treatment, not having treatment available (locational /financial restraints).
When I asked about diet and detox, the survey reflects that 85% have made some alteration to their dietary habits. Gluten was removed by over half and dairy almost at 47%. Going organic and removing or reducing consumption of processed foods are choices made by many. They also made lifestyle changes including detoxing, with 60% recording they do Epsom salt baths. Only a small minority under 13% didn’t know the benefits of some detoxing process/activity. I do wonder how many of these changes were done willingly and/or because of a parent or physician’s demand.
I was happy to see that the majority of the people who answered had a supportive environment. So much of healing has to do with the being a good place when it happens. Recovery takes a calm quiet nurturing environment and barriers to that are also barriers to healing. It was very disheartening to see that anyone regardless of age has to struggle with this horrendous disease alone. My heart goes out to the 5+ souls who have to fight without family support. Just remember there are always “families of choice”. When life does not provide you with one, I say find a tribe of your own. Then you can start to do the real resting it takes to heal.
Once again, I want to that everyone who took part in my collection of information. Thank you for your valuable input. While writing this report many questions were created for me, perhaps you as well. My goal is to create another survey. I hope to look at what’s helped and what’s not. If necessity is the mother of invention, then Lyme patients are creative forces untapped. I look forward to harvesting the reality of Lyme as a young person.