I believe it is and I'm here to tell you about it.
I've been hesitant to write this post because of all the unpredictability Lyme and related co-infections bring into our children's and our lives but after today's clean blood report and with the holidays approaching, I've decided to share some great news. Like all things Lyme, time will be the ultimate judge but for now we're celebrating! I'll try to keep the news brief so below is a very brief synopsis of the latest part of the journey.
It was 2 years ago and just a month after his Lyme diagnosis that we decided to host Christmas at our house for family in the area because we weren't sure if our son would be able to get out of bed that day and if not, he would surely enjoy his cousins being nearby. This year we will host again and fully expect him to participate thanks to progress made since July 2017.
Last year, our son continued to miss school - 1 day per week or 20% of the year. He often missed the same day weekly which happened to be the day after restarting medication most weeks. Keeping up with school work was a struggle despite his 504 plan and the teachers who thankfully adhered to it. His LLNP believed he was reinfected with mycoplasma last winter after his numbers finally started dropping and started to climb again into very positive territory. Thus his breathing issues continued and he used an inhaler until just recently when he told me he needed it much less all the sudden. Today his blood work report came back clear for the first time since treatment began.
By last summer, eager to earn some money, he found a great job working part-time outside in the sun at a marina. It was the perfect mix of sun, work and rest between heavy lifting of boats and he wasn't sick at all with the exception of 1 day of rest needed after his first post-diagnosis airplane flight (no herxing side effects) and a week of volunteering at high altitude. This was the first sign things might be improving since he had been sick through June, the very end of school.
He also ended up switching schools at the end of the summer. In a more positive environment and with a personal incentive to not miss a day of school, he took it upon himself to get to bed early every night. I'm thrilled to report he has not had a sick day yet this school year - the first time in 3 years. He also made it past his tick bite day without falling super ill - another first.
He is to continue on a more robust mycoplasma treatment for a few more months and then if everything is still good, he will move to maintenance which is 1 week of treatment after 3 weeks off. This continues for at least a year and then he will hopefully be done with treatment. Because he's a teen, I remind him that for the time being he will need to really stay in touch with his need for rest and that as he moves toward adulthood it will be his responsibility to recognize if symptoms are creeping back and get in touch with his LLNP immediately to squash it back down. I hope he will be willing to try some herbal maintenance and continue his supplements once he's off the meds but he understandably has serious pill fatigue and is a young adult male.
So, some of you might be wondering if there is anything that we think might have contributed to his progress beginning last summer after school was out. Obviously his treatment continued to decrease the pathogen load but I also honestly think that being in direct sunlight, shirtless and (naughtily) not using enough sunscreen as well as working barefoot really helped as did the change in schools. These intangibles seemed to push him in the right direction.
Other than that, he started taking CBD hemp oil daily under the tongue - 3 drops of a concentrated strain in July, diligently followed the LLNP's orders and has also taken probiotics and a few other supplements (currently CBD hemp oil, magnesium, multivitamin, vit D in winter, methyl B12 (under tongue and injections when he felt he needed) without fail. The CBD hemp oil could be playing a role in the absence of his chronic fatigue and better state of mind. I also cannot overstate how much he enjoys his new school combined with being able to play his sport full-time again and how that improved mental outlook has helped his overall health and mood.
While most all of his symptoms are gone, we did have one stumbling block this fall which may or may not be related to Lyme. Our feeling is that while the underlying cause was there, but manageable before Lyme, it was exacerbated by the tick infections and now needs attention for school success to ensue after these 3 years of sub-par participation.
After the school switch, he came to us asking to be checked for ADHD as he couldn't focus or remember what he'd just read and so on. He researched it and gave us his reasons for being tested which included impulsivity (which had peaked just before diagnosis). Last year I wondered myself how prepared he would be for college given 3 years of brain fog, missed school and so on as I felt I could see and hear a difference in him despite the fact that he still functioned at a pretty high level on well days.
His psycho-educational testing results showed pretty strongly ADHD with low working memory and slow processing speeds, which Lyme and tick co-infections also cause. As the psychologist said, he probably always had ADHD given our descriptions of life prior to Lyme back to preschool days, but that Lyme was dragging down everything by some unknown level. This does feel like what we've noticed but of course it's not quantifiable. I poked around online and read many adults with Lyme feel like that part of the disease never leaves, even after getting back to normal (which seems to be less than 100% for most) so I'm not sure we'll ever really be able to tease out the full or lasting impacts of these tick infections.
So, that in a nutshell, is the story of the last few months in an effort to offer hope to those of you still in the thick of it with your kids. It is a long road, full of potholes, threatened by storms and sometimes long, very painful, exhausting and even dangerous detours, but there can be a joyous reunion with better health at the end of it. So keep at it, one step and one day at a time!
Working wife and mom to two, including a teen son who was diagnosed with Lyme and other co-infections from an unseen tick bite with no bulls-eye.
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