Answers? We don't need no stinkin' answers!
If she still has active infection, it means all the standard (and many of the alternative and experimental) treatments have failed to address the root cause of the problem, and it's unclear what to do next. The doctor suggested that if this were the case, he'd want to go further into alternative therapies. Given some of the bizarre things she's tried, we're apprehensive about this scenario. But it would be nice to know that she still does have active infection, since that is a clear problem (even if the solution eludes us).
On the other hand, if the infection is no longer in play, it means that the fatigue and pain are essentially damage to her body left behind even after the bacteria have ceased their attack. Which might mean that they are here to stay. Nobody really knows what causes this condition. There's not a lot of consensus on what to do about post-Lyme issues, and many people in this position end up on a lot of pain and other medications. Some even have to go on disability as things worsen over time. However, her doctor knows a specialist in New Jersey who has had a lot of success working with patients with post-Lyme pain, and would send us there if that's what we're facing.
Yesterday, we had a follow up appointment with Dr. Specialist to review the test results. Neither option was very appealing, as both have little to offer in the way of immediate relief or even much hope. But we were both looking forward to the appointment, in a way, because - finally - after two years of mountains of pills, injections, bills, pain, frustration, and treks to various doctor's offices, we were going to get an answer.
Regular AdProb readers will not be surprised in the least to learn that our expectations were dashed the moment we walked in the door. Cait had three tests. One showed evidence of active infection. Another, usually very reliable, gave results that indicate the infection is essentially gone. The results of the third, and I quote from the lab sheet: "Inconclusive." At this, Dr. Specialist basically threw his hands up in the air and said, "I don't know where to go next." Which is pretty much the situation we've been in for about a year.
Because the pain has become Cait's major symptom, he is sending her to the doctor in New Jersey even though the tests are unclear. We were lucky to get an appointment a few weeks from now (Dr. Specialist thought we wouldn't get in until March - no offence, Jerseyites, but we DON'T want Harpo to be born in NJ!!) and are hopeful that a new doctor, with a new angle, may offer some solutions - even if we don't get any goddamn answers.