Welcome to MedHelp Lyme --
I understand and hear what you are saying. I would have the same questions and concerns. I'm not medically trained, but a family member and I both had Lyme and babesiosis in 2007.
Back then was when most MDs were still using only the basic Lyme tests available (ELISA and Western blot), which relied on the patient's immune system reaction to determine whether the patient had Lyme or not. Unfortunately, it was at that time not well recognized by much of the medical profession that the Lyme bacteria were capable of *suppressing the patient's immune system*, so that the patient could have a roaring case of Lyme, but still show negative on the ELISA/W.blot tests.
The view of the more progressive Lyme docs at that time was that if the ELISA/W.blot tests were positive, they were accurate, but if those tests were negative, they were *not* particularly reliable.
Around that same time, a new kind of test was introduced by IGeneX Laboratories in Palo Alto CA. This test did not rely on measuring the patient's immune system to make a diagnosis, but instead looked in the patient's bloodstream for DNA (genetic material) from the Lyme bacteria themselves. The IgeneX test was a big step to more accurate Lyme diagnosis, but as with many things, it takes time for recognition in the medical field.
A family member and I both got Lyme disease (and babesiosis, which sometimes comes along with Lyme) in ~2007, and we were fortunate to have a wise and well-regarded Lyme specialist nearby, so our diagnosis (and then treatment) was straightforward, and we (knock wood) remain healthy nearly ten years now. The only reason I knew to get us to a Lyme specialist was an old friend who had had Lyme 20+ years before, and I would not have thought of Lyme at all without that nudge.
To your question: should the MD have flagged the Lyme infection early on? I would say the MD *could* have done so, but at that particular time in medicine, testing by IGeneX was not entirely standard in the medical community, while ELISA and Western blot tests were accepted by many or most MDs as a standard approach. My family and I were simply fortunate to have an ILADS-oriented MD nearby, in addition to my old friend mentioned above, without whom I would have been entirely in the dark.
There are likely still many MDs out there who don't think the IGeneX tests are necessary. Should they have moved to IGeneX testing earlier, when your child was ill? That was probably a judgement call back then. Should MDs use the IGeneX test now and not rely wholly on W.blot/ELISA tests? I would hope they do, but it's been years since our family had Lyme, so I don't know the current standard, if there is one.
I'm not medically trained at all, but I would say, as mother to mother, that it would likely have been better to have the IGeneX tests back then, but it was at a major shift in this area of medicine. Don't blame yourself for what was not known.
And another thought: your child could have gotten bitten again more recently, since as I recall, the IgM antibodies show up soon in an untreated infection and then fade away, leaving the IgG antibodies to rise later, so it's possible that your child has been infected again more recently. Lyme isn't necessarily a one-time thing.
You did the best you could with the information you were given, and that you are pained still by your child's suffering is testament to your care and love for your child. Let yourself off the hook, and be glad your child is with you still. Only a good mother would have as heavy a heart as you do over this.
All good wishes to you and your family --