There's so much say and never enough time to get it all down, especially when dealing with the whimsy of Lyme and all its co-infections from minute to minute, hour to hour, and if we are oh so lucky, week to week. Any parent of a Lyme kid or kids knows exactly what I mean. One day I hope we will all be able to post it's now month to month or better yet years to years or best yet - never again. But of course, we are now all paranoid about that possible future tick bite that causes the merry-go-round to start back up with re-infection or re-activation.
I started this website because when I began my family's research into what I thought at the time was just late stage Lyme in early November 2015, and I quickly realized what a morass we'd waded into. Quickly it became apparent that this was not going to be one or two months of straight doxycycline and that our son did not just have Lyme but other co-infections too from his newly emerging symptoms, particularly during that harsh first month on doxy. After spending a month of my free time researching as many aspects of Lyme as I could and then all these other infections and how they can be treated, I realized I never really saw a site that was geared just toward parents with links to answers of some of the key questions I had and imagined all parents new to this would have.
I also discovered that Lyme is highly politicized which I knew almost right away from online discussions about how to find these elusive LLMDs whose names were not to be posted publicly as well as the lack of insurance coverage for treatment lasting beyond 1-2 months. It was incredibly eye opening and maddening to see how such ill patients and their LLMD doctors are being treated. At the same time, an urge to bury my head in the sand in denial of what lay ahead competed with an obsessive need to figure out which of the many treatment paths we should direct our son to first, seeing as he hopefully has many, many years of life ahead of him.
I quickly realized that most parents of kids with Lyme barely had time to post online because their time was completely consumed by dealing with their immediate situation and when they did it was to post their family story. In fact, because of the complexity of Lyme, reading these online stories was the best way to learn and confirm what our son's positive Lyme test really meant and how little pediatricians or mainstream doctors following the CDC guidelines know. A whole world of co-infections, never once mentioned by our pediatrician, opened up when started googling terms like "drenching night sweats" which it turns out are usually more related to mycoplasma and babesia co-infections rather than Lyme disease. It turns out most Lyme patients actually have multiple infections to treat. That is a hard concept to wrap one's head around - multiple infections! Most people who are ill are dealing with 1 condition or infection - we Lyme parents are dealing with multiple infections which require so multiple treatments for our kids, who are the real sufferers here. Our son looks perfectly fine on the outside - healthy when he's out and about and not sofa bound with black circles under his eyes and all pale and exhausted, but he's a hot mess on the inside ALL THE TIME- an extremely hot mess that no one outside his immediate family can see. Which leads to schooling and how and what to let them know and how to advocate for him since he may seem fine to his teachers who don't know he collapses after school for the rest of the day. Wow, the topics for this blog are never-ending.
Now that we are a few months into the journey, I hope I will continue to find some free time here and there to post about topics of interest or issues we as parents of Lyme kids are facing. I would also like to give a shout out to all the families with multiple Lyme patients, often including the parents who struggle with their own infections while trying to heal their children at the same 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.
Touched by Lyme-Leland
Lyme Disease Challenge Blog
Tired of Lyme
Lyme MD-Dr. Jaller
All Things Lyme-Cameron Blog
Better Health Guy
Abounding in Hope blog-Christian family of 6 w/Lyme
Lyme-Debug Your Health
Realm of Caring