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The Out-of-Network Costs That Can Add Up With Lyme Disease

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In one of my articles about dealing with disability, I briefly mention the cost that a lot of patients pay to treat chronic Lyme disease. This is also something I have a difficult time explaining to someone when I am asked about what doctor I am seeing. More often than not, people ask me what network of local doctors I am seeing, or if I work with an infectious disease specialist or one of the major university hospitals in the  area. When I tell them both of my doctors are not in network, I always get a look of questioning and a blank stare. For someone new to illness, I think their initial reaction is that I am working with quack doctors trying to steal my money and take advantage of me. Once I mention I work with out-of-networks, there is often a brief pause and then the question, “Do you mean a naturopath or one of ‘those’ types of doctors?”


Generally when the conversation reaches this point, I have learned to collect myself and know that some people I can go into detail with, and others I simply have to say, “Something like that,” and just move on. It is difficult when you are judged to not feel the need to explain yourself, to stick up for your doctors and go into detail about their credibility. Personally, to get where I am today, I have had to work with a wide range of doctors, acupuncturists, specialists, osteopaths, naturopaths and anything else you can think of really. Lyme is a complex and complicated disease that gets into many of your major body systems. Treating it requires an open mind. It is not deciding between one specialist or the other, but working with many of them as a team. This can get exhausting at times since some of my doctors know nothing about Lyme, but most of them are more than ready to hear about it and my experience.

Working with out-of-network doctors also means my insurance does not cover them. I have to pay for a PPO plan. My doctors I see specifically for Lyme disease are both out-of-network. A good LLMD (Lyme-literate doctor) can cost anywhere from $300-$700 per visit. We see them about every one to three months. Although my prescription medications are covered, the supplements I am on are not. They can cost up to a thousand dollars a month. A lot of these are used to keep my major organs operating and support my body with the treatment. I am up to 40 prescriptions and supplements a day. The two  IV therapies I do once a week are not covered either, but I can submit them towards my out-of-network deductible that is ridiculously high and most likely will never be met. These costs add up quickly. It can become overwhelming finding a way to pay for them, to budget with the little money that patients have because many of us do not work. It is time-consuming and overwhelming. Another part of the disease that can lay silent and be overlooked.

Many patients treating sadly have to stop due to finances. Either they cannot afford treatment at all and never make it to a good doctor, they run out of money while treating, their support from family and friends runs out or their insurance company will not pay for the cost of treatment. My father once asked me what someone will do then. The answer is sad, but they simply will get more and more sick. It is a sad reality of the disease.

One woman that is well-known on social media for being public about her Lyme treatment recently had this happen to herself. Genevieve was a yoga instructor and vibrant human who got diagnosed with Lyme disease in 2016. Her treatments were working, but the insurance company decided not to pay for them and therefore she has had to discontinue. She started a Go Fund Me page to help her raise money to finish treating. She is one of the many patients who have to do this. Money is most definitely an issue for each and every patient treating this disease and it is not easy to ask for money, especially from strangers. Many of us have vowed to never let it come to that, but in times it is necessary.

It is sad that we live in a world with the technology and resources to help people with illness and disease, and it has come to a point where you have to be able to afford your health. Thinking of that breaks my heart. I know the world is an imperfect place, and we do not live in a utopia, but if we have the resources to fund research and help patients, we should be able to make that happen.

I hope sharing this with others can help friends, family and patients new to treatment understand it is not an easy fix either financially or physically. When people have to fight for their health, that fight is often not just physical – that fight takes place in multiple ways. Hopefully research will continue and the word about this disease and many other silent diseases can be spread to help get patients the treatment they need and deserve. In the meantime, the more we share our stories and experiences, the more people who are not directly affected by by illness can learn.

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Thinkstock photo via Dutko.

Originally published: July 25, 2017
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