I just finished an interesting book, “Patient from Hell” (Schneider and Lane). The central thesis of the book has to do with the types of evidence that can lead to knowledge about how to treat something and how the medical profession fails to make use of some of those types of evidence. A second key point in the book is that certain types of decisions should be in the hands of patients, not just doctors. Let me try to clarify these points, since I think they are very relevant to the experience of Lyme disease. As a side note, the book itself is a little difficult to follow, this is not necessarily a recommendation of the book, just my attempt to restate their conclusions in terms that make sense to me and relate to Lyme disease.
The type of knowledge that is most commonly used in medicine is called “frequency knowledge” by Schneider and Lane. This is the knowledge that is created by trying something over and over again and seeing what happens. For example, flip a coin enough and you’ll know if it’s balanced or not. Give long term antibiotics to enough people with Lyme disease and maybe you’ll find out whether it can help them. This kind of knowledge is relatively easy to generate in an easily controlled, repeatable situation (like flipping a coin). However, it is much harder to get solid frequency knowledge in a more complex situation where every coin you are flipping is different (or every person with Lyme disease is different). Clinical trials generate frequency knowledge, and in the case of Lyme disease, they will probably be at least partly inconclusive until many more trials are run.
A different, equally valid type of knowledge that is sometimes ignored is “process knowledge.” This kind of knowledge complements frequency knowledge, but is sometimes not considered to be truth by doctors because it is “untested”. As an example, consider the image at top right. It’s made with wooden blocks that can be put together in any number of combinations. No “studies” have been done of this particular construction, yet you can look at it and with a fair amoutn of certainty, you can predict where the red marble will end up (even though you do not have complete informatino about the structure). Not only that, you can predict with complete certainty what will happen if I remove a critical block. You are using logic to draw valid conclusions about the world that are likely to be true even though they are untested. The wonderful work being done to understand Bb’s life cycle, the ways in which it may resist antibiotics, and so on, are all examples of process knowledge. This knowledge can be used by researchers to infer potential was of treating lyme disease. It can also be used by patients and doctors to decide, now, given a lack of frequency knowledge, what the best choices are. This is one part of the path taken by LLMDs.