Posted 6/16/2016 11:08 PM (GMT 0)
Hi, firstly I wanted to say what an inspiration you and your daughter's story is to me. I also had a few specific questions about your situation.
My own daughter, now aged 9, like yours suffered from some mild sensory processing issues from birth (sensitivity to sound, disturbances in the vestibular register), but things really blew up around her 5th birthday when she suddenly developed acute tactile hyperdefensiveness -- she could no longer tolerate the feeling of her clothes against her skin. Nor could she tolerate sitting in the car or on most furniture. Our existence became a living hell. I've spent the last several years throwing everything I could think of at the problem -- tons of occupational therapy, neurofeedback therapy, primitive reflex integration, craniosacral therapy, dietary changes, homeopathic medicine, etc. Everything helped a little, but nothing brought her sustained relief. In 2014 we finally found a child psychiatrist who postulated her condition might be PANS/PANDAS-related. Interestingly, though he wasn't necessarily convinced that strep was the triggering pathogen in her case (though we *both* actually have very high strep titers and definitely seem to be asymptomatic carriers), he *never once* mentioned Lyme -- even though Lyme and particularly Bartonella are much more notoriously associated with causing weird PNS symptoms like skin sensitivity than strep. My daughter was on a prophylactic dose of azithromycin for a couple of years under his care and definitely improved somewhat, but still struggles greatly with her clothes, especially shoes.
It was only when I got seriously ill a few months ago, and was eventually diagnosed with chronic Lyme, that I started to make the connection between my own long-standing (but up until recently, still-manageable) health issues and hers. Boy has this felt like some kind of crazy cosmic tearing open of universe, replete with possible answers but also with just as many questions.
My daughter was a weak positive for Lyme on the WB/Igg (39 IND & 41+++) and so far has had no positive results on co-infections from PCR -- but this apparently is fairly common for kids with congenital Lyme, plus she was on antibiotics for so long it could definitely be skewing the PCR results.
My own WB was off the charts but I only tested positive for Ehrlichia on the co-infections panel. I'm undergoing treatment for Babesia, though, based on clinical symptoms. Interestingly enough, my daughter has more of the classic symptoms of Babesia than I do.
We're both seeing the same LLND in San Francisco, who has me on an intense regimen of abx but is starting my daughter out on herbs alone to see how she responds to treatment. And without a doubt I've seen her symptoms improve since she's been doing the Lyme-specific treatment. Not dramatically, but noticeably.
My questions for you are as follows:
1) It seems that in your case and your daughter's, you came to feel that Bartonella and also Babesia were more at the root of your problems than Borrelia, per se. You say you first realized Bartonella could be an issue when you came down with symptoms of it yourself. But what exactly besides the telltale striae that sometimes (but not always) appear on the skin distinguishes Bart symptoms from those of Borrelia? I'm just intrigued by your account because I really thought I knew my co-infections, but don't quite understand how you were able to identify Bart as the culprit so specifically as opposed to Lyme.
2) In the case of your daughter, what made you decide to switch from a treatment protocol that included abx to an herbal one? Did you yourself get better with abx or mainly with herbs? Or a combination of the two?
3) Finally -- and this is really a broader question for all those mamas out there who are fighting tooth and nail for their kids' and their own recovery from this widely misunderstood disease -- how did you cope with the stress of caring for a seriously debilitated child while feeling so under the weather yourself? What got you through it?
I actually had my daughter 100% on my own -- her biological dad was never in the picture -- so it's always just been the two of us, although I do have a long-time partner who at least provides us with something of a safety net financially now in the face of the double income hit of being disabled + racking up thousands of dollars in un-reimbursed medical expenses every month. I just feel sometimes like it's us against the world, like we're waging a battle for our own survival that never, ever lets up.
Thank you for keeping up with these forums and continuing to share your experiences and insights even now that it sounds like you're out of the woods. It means the world to folks like me who are still very much in the trenches with no horizon in sight.