I think we need to stop diagnosing ourselves with Lyme disease. I think a better diagnosis for many of us would be “chronic illness involving Lyme” or something which is even less elegant, but perhaps more accurate than the label of Lyme.
Why? Well, first of all, those who have been diagnosed with Lyme disease often fall into the trap of wearing this label like a badge. Why not? When somebody asks you what illness you have, it’s just so easy to say “Lyme disease.” I mean really, you don’t want to get into a dissertation about all the biochemical foul-ups of your body, do you? It’s just easier to say you got bit by a tick and now you have a bacterial infection in your body. (If only that were it!). Wearing such a badge, however, isn’t beneficial for the identity, in my humble opinion!
Many of us have also been brainwashed into thinking that borrelia is what this beast of illness is all about, too. Get rid of the borrelia and you solve all your endocrine, immune and digestive problems, right?
But the beast is a different shade of ugly for everyone, and my four years of researching Lyme disease and observing others in the “Lyme community” (ahem) have taught me that we can’t all follow the same treatment path, because the bugs aren’t what chronic illness involving Lyme is about for everyone and we all have different problems to contend with in our recovery.
Yes, perhaps we all have active borrelia infections, but the borrelia might not be the primary reason for symptoms, and its role may only be that of an opportunistic infection that reared its spiraly head because of a weakness in the immune system.
Really, chronic illness is all about the immune system anyway, and why the immune system gets knocked down is a more complicated matter than just getting bit by a tick. I think that those with borrelia who tend to have no snags in their recovery, or who find themselves well after a year or two of antibiotics alone, are those for whom borrelia is the primary question, but it ain’t so for many, or perhaps even a majority, of us.
Immune and endocrine dysfunction (related or unrelated to borrelia),compromised detoxification, environmental toxins, gut dysbiosis, and other issues play just as an important role in illness as borrelia, and may have even been the reason why borrelia was allowed to come out and wreak havoc on our bodies. Giving only incidental attention to these issues may complicate recovery from Lyme infections, but some of us may be tempted to relegate them to second place because, after all, aren’t the bugs primary?
Okay, well whether they are or aren’t, the above-mentioned factors must also be addressed if those with chronic illness involving Lyme hope to fully recover. And I believe, in my wee humble opinion, that just as much attention must be given to these factors as to the bugs.
Unfortunately, treating immune and endocrine dysfunction, gut dysbiosis and all the rest, can be just as complicated, if not more so, than treating infections. I know, as if three forms of borrelia weren’t bad enough, right? But if we could actually get our immune systems to work right it would sure solve a million more problems than if we had just killed a bunch of bugs.
Taking the problem of categorization even further, many of us, if we have learned to address these other issues, may yet put them into neat little boxes too, but what if we need more boxes, or our boxes aren’t big enough for our stuff? What if, for example, when we think about treating endocrine dysfunction, we consider only the thyroid or the adrenal glands? What about the hypothalamus or pituitary gland? And if we consider the thyroid, do we only look at thyroid hormone deficiency? Or do we try to discover whether the body is actually using thyroid hormone, and if it isn’t, then why not? How far up the HPA-axis do you go to discover why the thyroid isn’t functioning properly? Or do you not go up the axis, and instead look at the thyroid itself, to see if there might be some mercury or bug bits lingering there?
I’m not suggesting we attempt to do such things. A friend quoted a verse from the bible the other day which gave me great reassurance about treating my own chronic illness. I don’t recall where that verse is, but it goes something like this, “For I do not concern myself with things too high or wonderful for me.” The implication of this verse is that my god will help me when I can’t help myself anymore, which gives me great relief.
Sometimes, the stuff of chronic illness is just too big for us to get a grip on, and our categories are probably much punier than we can imagine, yet we find security in those categories because they give us answers and those answers provide knowledge, which is power. What we fail to understand, however, is that no matter how abundant our knowledge, it is yet often insufficient to get us where we need to go, and is probably only a drop in an ocean of truths that have yet to be revealed to us.
Another reason why the above-mentioned bible verse gave me comfort was because I don’t believe that in the end, acquiring mountains of knowledge is what is going to heal me. Yes, it helps, but I happen to believe that the right knowledge will come to me from above, and perhaps in unexpected ways. Maybe I’ll have to get a degree in immunology or endocrinology in order to figure out how to successfully mop up the messes that still linger in my body, but somehow I doubt it.
Truth be told, when it comes to chronic illness involving Lyme, I think we can study medicine until the day that our spirochetes sprout wings (God forbid!) and perhaps not get much further than where we are already at. Knowledge is power, but it’s not everything. Wisdom is superior to knowledge, and sometimes wisdom isn’t found in a doctor’s words, a textbook or even a Lyme book.
And I think it’s wise to loosen our grip on the categories that we hold onto so dearly in disease, because there are more that are yet to be discovered, and how they all work together is somewhat of a mystery, even to the most brilliant of minds. Besides, it’s not beneficial to think of ourselves as having Lyme, because in reality, that’s not what it’s all about.