It is day 20 which means it's a "sofa day" here in our household. Every 20 days, like clockwork, our son suffers from extreme, completely debilitating fatigue along with his usual daily symptoms, like fevers and breathing difficulties. It usually starts 2-3 days before day 20 with fevers that start cycling every 10 minutes - up and down, up and down in the afternoon or late day along with horrible chills. He will also have early evenings of the same fatigue but usually can get up the next day and make it to school, albeit late, days 18-19, but day 20 is when it becomes impossible to do more than go to the bathroom and return to his spot on the sofa. Sometimes his appetite will wane again on those days too.
So what causes these predictable cycles of his illness? Is it the Lyme, babesia or mycoplasma?
It appears from my research it is the Lyme, which tends to cycle around 21 days for men while more often following the menstrual cycle of women. Some patients also report their cycles correspond to the moon's cycles, particularly when there is a full moon. This is not to say that patients don't also suffer from daily flares which for many occur in the late afternoon. If there are multiple co-infections going on at the same time, one can expect there to be several flare cycles. So far, for our son, the Lyme flare is the most pronounced. I have read that the flare, or worsening of Lyme symptoms is due to a monthly die-off of Lyme bacteria and the body goes into a Herx as it tries to get rid of the ensuing debris from the die-off.
Over time, these monthly flares should lessen in severity if a patient is being treated. If the flares remain the same, it is time to discuss reconsider the treatment plan and dosages with one's LLMD.
So how can you figure out your child's flares?
By keeping a Lyme journal, which is what allowed us to figure out our son's Lyme flares. We are now focusing on comparing each day 20 to the day 20s before it to see if there is any noticeable improvement. I cannot stress enough the usefulness of charting your child's symptoms to see what's improving, what's new and what's disappeared from the scene. We do not fill in our spreadsheet daily lately, but I do get an overview of the previous week from our son and make a few notes about new symptoms, lessening or strengthening of current symptoms and noting any that may have gone away.
At only 4 months into treatment, there aren't many that have gone away yet - just the cough, drenching night sweats and a note that fevers seem to be less intense and perhaps a little bit less frequent - woohoo! Others have worsened though including breathing and joint and tendon pain. This is to be expected in early treatment. I liken treating Lyme to peeling back the layers of an onion. As one layer gets removed via treatment that is starting to work on the infection, another layer emerges full of its own new symptoms and perhaps even a lab or clinical diagnosis of a new infection occurs. With our son's infections, we still seem to be peeling through the onion layers.
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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