If You Are Diagnosed with Chronic Lyme Disease, You Are on Your Own.

That little bottle of pills cost $150. Insurance doesn’t cover it. It’s one of many, many bottles I have that are not covered by insurance. Then there are the $500 per hour doctor visits that are not covered by insurance. And the lab tests that insurance doesn’t cover.

Why, you ask?

I’d have to write a dissertation-length post to answer that question. The short answer is insurance does not cover chronic lyme disease because there is much disagreement and debate about how to categorize patients who do not recover from an acute lyme infection after an initial round of antibiotics. The standard treatment for an acute lyme infection is 14-21 days of doxycycline. Insurance covers that.

But if you still have lyme related symptoms after initial treatment, you are on your own – on many different levels. You are on your own financially. But you are also on your own in determining your treatment plan, as there are no standard protocols for chronic lyme disease. 

If you are diagnosed with a better understood, less controversial disease, you will be ushered into a pre-existing system custom designed to fight whatever ails you. And insurance will pay for it.

If the diagnosis is chronic lyme disease, welcome to the wild west. Without a tour guide. One lyme sufferer described it this way: “It’s like you are being killed from the inside out, and you have to solve your own murder mystery.” Along those lines, I have often referred to my battle with lyme as a scavenger hunt with no clues.

If you have chronic lyme disease, your only hope is to be treated by a lyme-literate doctor. Lyme is incredibly complex, very widespread (it’s an epidemic), and there are not enough lyme-literate doctors to go around. 

In that light, here is what it looks and feels like to battle chronic lyme disease:

1. Even though you haven’t been to medical school, you are basically forced into being your own doctor. You bear the burden of researching various treatment options, and you have to make your best educated guess about what will be effective for you. You literally take your life in your own hands. 
2. You must do the above while feeling miserable on a daily basis. I am beyond grateful to my husband, who is the Research Director of my operation. For many years, I was so exhausted on just trying to survive lyme disease that I didn’t have any energy or interest in reading about it. Living it was bad enough. My husband has been instrumental in guiding my treatment, and I would not have made any progress without him.
3. Once you manage to find a doctor you think can help, you are faced with a long wait time for an appointment. Usually three to four months. Currently, I am about a year into a THREE YEAR waitlist for a doctor in Colorado (I live in Minnesota).
4. Speaking of Colorado, you are often forced to travel to another state to seek treatment. See point number one about lyme literate doctors being few and far between.
5. Sometimes you can get certain tests covered by insurance if they are standard tests that are not considered lyme specific, but it’s usually a hassle, and requires several calls to the insurance company. If you are being treated by an out of state doctor, as I am presently, it can be a challenge to get your tests covered in your home state. Case in point: this morning I had to drive an hour round trip for a blood draw, as there was only one facility that insurance would cover. And I had to make multiple calls to the insurance company to find the out-of-the-way lab.
6. You live with the emotional stress and burden of wondering if you are doing the right things. I often say if you line up ten people who have recovered from chronic lyme, you will hear ten different stories of how they did it, as each lyme patient has to solve their unique riddle.
7. Because there is not general consensus on treatment options, each lyme literate doctor has their own approach. As a result, you end up switching doctors a lot. You start with one doctor, and their approach may or may not help you. If iit doesn’t, then you move on to the next doctor and try their approach. Sometimes one doctor’s approach works for a while, and then you hit a plateau. So, then you switch. You get the drill. All that switching is stressful and usually expensive. Stressful, because you are moving on from somebody you’ve learned to trust, and you need to build trust in the new person. Expensive because each doctor wants to collect their own data. As such, a doctor switch usually results in a new battery of tests. And by now you know those tests are not covered by insurance.
8. You can get overwhelmed with medical bills. I make a conscious effort not to know how much my care has cost. If I knew, I would get even  more sick. If I had to guess, I’d say it’s close to six figures. Yes, you read that right. People sell their houses to treat their lyme infections. Seriously.

I could go on, but you are probably exhausted by now.

I’m sharing this information because my experience is most people know somebody with chronic lyme. But my guess is unless you are very close to that person, you don’t have any idea what they are truly facing. Why would you? I think most people assume people with chronic lyme are treated the same as people with other illnesses. If only that were the case.

I don’t think it will always be this way. There are numerous lobbying efforts going on, and eventually things will change. This is truly an epidemic, and one day it will get the funding and attention it deserves.

Until then, I pray every day for my fellow lyme warriors who are facing this hellacious battle without the proper resources. To stand a chance of recovery, you need financial resources, intellectual resources, and a strong support system. I’m grateful and blessed to have all of the above, but I never forget about those who are not so lucky. This has been hell on earth, and I literally cannot imagine what it’s like for those who are facing far worse with far fewer resources.

My heart goes out.