I recently had an discussion about the word "incurable" being used when discussing Lyme Disease. This friend disliked that sentiment because she felt like it paints a negative light since many people do recover, and for someone close to her that word was upsetting hear (in association with his illness). We had a back and forth discussion about this very topic, which I wanted to expand upon here. It got the wheels in my mind turning as to what exactly goes into getting well from Lyme Disease, and what the word "cure" means to me.
The reason that Lyme disease is such a tangled web is because each and every patient is different. If you talk to an LLMD they will tell you that one treatment approach will not get all of their patients well. Treatment has to be tailored, and that's everything from the meds they use, to the kinds of supplements, to the kinds of support care, and even what needs repaired in the body. It's so complex, mostly due to the variables like co-infections, how long a person has been ill, how long it's been untreated, how far it's spread, etc. Each patient is an onion that needs to be peeled back and treated according to their needs specifically.
So what's the trouble with this model?
The way that Lyme Disease treatment is now is essentially survival of those who have the means, the money, and the access to the right Doctors. I can't even begin to estimate the out of pocket expenses incurred since I began my quest to wellness. If my parents didn't fork up money for hundreds of different trial medicines, supplements, etc then I truly believe I would not be here today. I have a body type that is highly sensitive, and very highly reactive. I have a Doctor who works with my sensitivities and has taken an approach to healing that is gentle and tailor made for me. This Doctor spends hundreds of hours a year at different conferences constantly furthering his education to help his patients with cutting edge treatment. This Doctor is also 100% out of pocket, because my insurance (and most insurance) does not cover his care. He is one of the best but his care comes at a large cost, not to mention an almost year long wait list.
I know people suffering, I know families suffering, and I know that it isn't fair to those left out in the cold. Just because I have the money, resources, or perhaps good fortune to find the Doctor or Doctors who will help find what works for me, and put me back piece by piece, it doesn't mean others have that same luxury. This is where the topic of finding a "cure" comes into play, because as of now healing from Lyme Disease is trial and error. It is trial and error in finding the right Doctor, and hoping he/she is close enough to get to them. It is trial and error in finding the Western/Eastern medicine to use that works with a patients body chemistry. It's trial and error in so many ways, that YES you can get well, but it takes a village and lots of research and many moving pieces to get there. And we have to acknowledge that not every patient has these luxuries. I see so many campaigns by people raising money for treatment because they can't afford the cost of what they need to save their life. It is utterly heartbreaking.
When I say I want a "Cure" for Lyme Disease, it's a cure that works for every patient, every time. A great example is looking at cancer. Even though many people survive cancer and live full healthy lives it is not regarded as a curable illness. The "cure for cancer" runs and fundraisers are widespread, and rightfully so. Until they can find a treatment that works for every patient and rids the word of cancer, making it an easily beatable condition, it will be seen an needing a "cure." This is how I view my quest as well, and I fight to find a cure that doesn't let anyone slip between the cracks.
I understood my friend's viewpoint that saying Lyme disease is "incurable" can be a tough word choice, because by most that word is reserved for things like AIDS, which is truly not curable. And I understand that in contrast many Lyme patients do go on to live full lives and feel well. So the word "incurable" can be tricky.. but there is a middle ground between "incurable" and "having a cure." That mid-ground is what so many large organizations are fighting for, such as Lyme Alliance. They are working to fund research to have a "Lyme Free World." Yolanda Foster often references finding "A cure affordable for all." This is the tone that many people have when discussing the sentiment of finding a cure for Lyme Disease, myself included.
Will some people still say it is incurable, and use that word to describe it? Yes, probably. But I don't believe the tone behind that is to be negative or deceptive. I've been asked before, "When will you be cured?" And this question is always a bit difficult to answer.
Which leads me to my second point..
What do I mean when I say "Cure?" What is my definition of a patient who is indeed cured of Lyme Disease? From what we understand about Borrelia, it can hide in biofilm, or cysts, or deep in tissue, that means that extreme care needs to go into staying on top of it. If the immune system drops down then it can thrive again, and that's how many people relapse. To me, a "Cure" means that it's gone forever. It mean's that there would be a treatment that would kill every last bacteria in every form in every part of the body so there is no worry or question of it EVER coming back. THAT is a cure. In a broader term it means accurate testing to catch the disease as soon as the patient gets ill, and it means better recognition with insurance so that all treatment is covered.
The thing here is that I speak to way too many patients for me to have a singular opinion. I can't pretend that just because I could hypothetically find a way to get well, that suddenly it's curable and fine. I have spoke to many patient's who were well and seemingly "cured" for years. And then divorce happened, or a large surgery happened, and boom they hit a full on relapse. We can't pretend that does not occur, because it does, and those people are a perfect example of why I will always fight to fund research for a CURE. Because we all deserve a LASTING cure, and a REAL cure.
In summary, I understand why the word "incurable" can be a hot button word for some, and disliked when it's used in relation to Lyme Disease. But in other ways I do feel that we don't live in a world which has a cure (by my above definition) for this disease. Right now, as I write this in 2016 it doesn't exist. Are there people who have recovered and stayed well for 10-20+ years? Yes. But those people are not the majority, and realistically it's not simple to get there. Those who did get there did so with lots of hard work, determination, means, and trial of MANY modalities. And until there are people who are left behind or left struggling, it won't be good enough. Even though I don't personally like to use the word incurable, I can understand why some do. To those who are in the thick of the battle field fighting each day without resources or help, it does feel like every definition of the word "incurable."
So until we have a cure I will continue to advocate for patients, and I will keep trying different therapies and treatments myself to help me heal and reach a state of remission where I am living a full life again. Each and every person who fights this disease is a survivor and a warrior in every sense of the word. And I believe deeply in my healing and your healing as well. But a desire for an ultimate cure will never end, and I won't give that up until that day comes… for everyone.
Christina is the founder of Lady of Lyme, a blog chronicling her journey to find health with Lyme Disease.