First off, I would love to get some feedback on this topic which I'm revisiting earlier than I had expected - have you noticed that your kid(s) with Lyme perk up in the summer, only to slide back into symptoms in the fall-winter-spring? This is the second year we've seen this happen rather dramatically.
As mentioned in my last blog post, our son had an amazing almost symptom-free summer, starting as usual in mid-June, except for one terrible heat-induced breathing and hyperventilation episode and hot flashes and daily fever (down from numerous daily fevers). The best part was he had not one day or night of the chronic exhaustion! He was able to enjoy time with friends, even group sleep-overs - things that happened minimally, if at all, last school year. And he started high school cross country, despite his breathing issues which is pretty awesome.
But then school started and by the second day he spiked an afternoon fever in class and came straight home and didn't move the rest of the night. I admit it was a big blow for me. While I knew based on his history the past few years that relapses had happened in October - around his bite time, I was hopeful we would be past it this year.
The good news is that, after 10 months of treatment, he rebounded more quickly than last year. This week the day after re-starting treatment, he had a sofa day and missed school and a test. Again, he recovered and attended school the next day. Hopefully this trend of 1 day of fatigue and then well again will continue so less school will be missed. Progress, however slow it can seem, is being made with his treatment and that is so gratifying.
Thank God for LLMDs and LLNPs - forever our publicly unsung heroes with their knowledge, tenacity, open mindedness, compassion and willingness to fight for their patients' rights to heal!
I thought I'd write about something that is very common to Lyme families - new symptoms emerging throughout treatment. A month ago, our son started a new protocol which included treatment for bartonella, also known as "cat scratch fever".
While he had some symptoms of it - extreme irritation and cursing a lot which are also hallmarks of teen boy behavior - it was unclear that he was infected. He had no skin marks nor the common complaint of pain on the soles of the feet. The diagnosis had been made clinically, plus it is ranked as the number one tick co-infection and since he had number 2: babesia and number 4: mycoplasma, it would make sense that he could also have number 1: bartonella.
The day before he started his second cycle after a break, our family was watching television and I looked down and saw stretch marks in the center of his back at the midpoint of his spine. While looking at that I also noticed a pretty large patch of very small white spots up along his hairline, like a smattering of white freckles against his tanned skin.
A quick internet search showed numerous photos of bartonella stretch marks in the same exact spot. I'm not sure what the white spots are - a fungus perhaps? The stretch marks were lighter and a very pale pink compared to the more striking internet images. By the next morning they were gone, the white patches were fainter, and he started cycle two. Now on day 5 the stretch marks are back and the spots are now larger raised pink welts and are moving down toward the stretch marks - pretty sure they are both caused by bartonella which has clearly been stirred up with the new treatment.
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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