After the Fire
When talking to people about tick-borne disease, I find myself using analogies, making comparisons to things that make it easier to understand. Like when I get asked why some people get better after treatment and others do not, I often use the analogy of a house fire. Stay with me as I walk you through the comparison.
When your house is on fire, you call the fire department and the fire fighters come and put out the fire. Now most people can’t just go back into the house and live like they did before the fire. The house will not function the same way. There could be debris and things that don’t work. The obvious next step would be to call a contractor to clear away the debris and destruction and start rebuilding. Sometimes, you only need one contractor but often you will also need an electrician and a plumber. And collectively, they get the job done, the house gets rebuilt and is now habitable.
But what if the house AND the garage are on fire and the fire department only puts out the house fire? Subsequently, when patients have a tick-borne disease and are not properly diagnosed or treated, an underlying infection can remain and can continue to cause symptoms. What if the house and the garage are both extinguished and as they leave, the fire department tells the homeowners that all is good and that they can now return to their home? So, the homeowners go back to their home expecting things to function properly only to discover that they don’t. They live day after day in a burnt-out structure with the expectation that things will get better only to discover that they don’t.
Here is the part where I tell you that not all medical providers are the same. Some will give you an antibiotic when you are sick, and some might even go as far as to talk to you about diet and exercise. But most allopathic providers don’t have enough time in their 15-20 minute visit to talk to you about the rebuilding phase of treatment. You would be lucky if they gave you a few names of some local providers who could aide you, but without education about why you need it, how likely are you to make that call?
I learned a lot about treatment phases during my own journey with late stage neurological Lyme disease and tick-borne coinfections and I can’t stress enough the rebuilding portion of treatment. A complicated disease requires an integrative approach not only to treating but for healing and rebuilding.
When the fire is out, you don’t keep dousing it with water. And when an infection is gone, you don’t keep throwing antibiotics at it. Antibiotics serve one purpose: to destroy. They do not rebuild. At what point do you start rebuilding? I talk to thousand of patients who give me the “deer-in-the-headlights-stare” when I ask them what they are doing to rebuild. When I explain how important that phase is to their overall recovery process, it starts to make sense why they are still so tired, why they continue to have cognitive issues like brain fog. I had a patient sobbing thinking they were relapsing. When a simple blood test showed how depleted their vitamin levels were, a diet modification and some supplement supports were added and within a few days, she felt better than ever.
You need a contractor to get in there and remove the debris and start rebuilding. You need an electrician and plumber to fix what was destroyed in the fire. And when you’re chronically ill and you successfully put out the infection, you can’t just go back to the way things were and expect that your body will function as it once did. I know that I had that expectation and was surprised when my medical provider started talking to me about the lymphatic massage. I had just come from a long period of time where I couldn’t even be touched without experiencing debilitating pain and she wanted me to start seeing someone about lymphatic massage??
Since going into remission five and a half years ago, I have been seeing several local providers who have taught me so much about the many systems that our bodies have, how stress and disease takes a toll on our bodies, how all the different modalities that they offer helps aide my body to keep functioning the way that it should to keep my immune system running properly, which in turn, keeps me healthier.
So, after my fire, I needed the help of different providers who not only taught me how to live healthier but how to grow stronger and stay healthier. I refer to these kinds of providers as “the secondary support system” and I can not stress enough what a difference they can make in your life. Whether you reach out for chiropractic manipulation, lymphatic or craniosacral massage, reiki or reflexology, don’t starve your emotional and spiritual needs. There is no shame in talking to someone about what you’re going through, be it a support group or one on one with a counselor.
They say it takes a village and there is much truth to that. Don’t expect your primary care provider to have all the answers. They are trained to put out the fire. After the fire, gather your resources and begin rebuilding. It’s different for everyone so be open to what you need and where to find it. Embrace your new normal and start your new journey today!
Paula is the President of the MLDSE, the 2018 Co-Chair of the Access to Care Services and Patient Support subcommittee of the Federal HHS Tick-borne Disease Working Group, the Maine-partner of the national Lyme Disease Association, member of Maine’s CDC Vector-borne Workgroup and active in Maine’s Lyme legislation. You can reach her at: [email protected] or visit: www.mldse.org.
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