My Story: Part 3 – The Cost of Getting Well

I have to give a little background information before delving into this part of my story:

Many in the medical community, despite overwhelming evidence to the contrary, believe that Lyme Disease is always cured by short term antibiotics. These medical professionals deny that patients who continue to suffer from Lyme for weeks, months, or years still have Lyme. They say that these patients have some other illness, or are faking it, or are crazy. If these patients test positive for Lyme after being “cured,” these medical professionals say they had to have been bit again, and once again prescribe the same short term antibiotics, which once again do not cure the patient, and the patient is again told they have some other illness, or are faking it, or are crazy. I hope and believe that a change is coming soon in the medical community. When hundreds of thousands of people are suffering – we can only be ignored for so long.

In the meantime, because Chronic Lyme Disease is not acknowledged by the CDC, treatment for it is often not covered by insurance. This means that many patients are unable to afford the treatment and care that they need to get well.

Doctors who understand Chronic Lyme Disease and offer longer term treatment for patients are often cloaked in secrecy – their names only spread by word of mouth and through secret lists maintained by Lyme Disease advocacy groups. Many of them do not take insurance at all. These doctors risk their licenses for treating an illness that “doesn’t exist,” or coding care in such a way to get coverage for their suffering patients. These doctors who understand Lyme Disease and treat beyond the short term are known as Lyme Literate – LLMDs, for short.

—-    —-    —-    —-

In January, while sitting around waiting to get well, I decided to dip my toe into the LLMD search. I had so wanted to be one of those people who just gets better and avoid the whole LLMD situation altogether, but January would mark 4 months of being debilitated by Lyme, and I felt as though I couldn’t leave any stone unturned. So I did my secret searches and came up with a list of a few LLMDs within an hour’s drive. Lucky to live in Massachusetts in this case, as many patients have to travel very far, incurring flight and hotel costs to see an LLMD. I investigated each one, and found that one practice would accept insurance. No-brainer – I chose that one.

They were able to schedule my first appointment quickly. When my appointment began, I immediately knew I was in the right place. These people get it. They went through my whole medical history with me, were appalled by the way I was brushed aside by the Infectious Disease doctors, and found it borderline negligent that certain steps weren’t taken, or even mentioned to me as soon as I got that positive Lyme test result. Immediately plans were made to get to the bottom of how much damage the Lyme had done, and how we could best get to undoing it.

I want to be very clear in saying, it would be a great financial hardship for my family to pay for my care without insurance coverage. I’m not really sure how we would swing it, and frankly I don’t like to think about it. It is maddening to think that I could be as sick as I have been, for coming up on seven months, and an insurance company could say. “Sorry, your illness doesn’t exist. Good luck with that.” The truth is that even with insurance coverage, Lyme treatment is expensive.

The first cost of Lyme is my lack of income. Before I got very sick in September I was working 20-ish hours a week as a postpartum doula. I am completely unable to do that now. The next cost of Lyme is driving an hour to my appointments, for which my wife needs to take time off work because I’m unable to drive myself that far, due to Lyme symptoms.

Once I started with my LLMD, a whole host of blood tests had to be completed. You need to find out what areas of your system have been compromised by the Lyme, what co-infections you have, and what important nutrients you may be deficient in, along with numerous other factors. I was lucky to have all of my blood tests covered by insurance, except for one, which we felt was necessary, and paid $200 out of pocket for.

My continued doxycycline, and a couple of additional antibiotics are thankfully covered by insurance, so it’s just $10 copays for each refill. I, like most Lyme patients require a plethora of additional pills – probiotics, biofilm attackers, high dose vitamins, nutritional supplements, just to name a few. At my first LLMD visit, I dropped $95 on pills. Then another $90 when I started to run out of things. When test results started to roll in, and pills were added, another $45. A month into my treatment, at my follow up, I spent $200 more. I’ve already spent an additional $160 on refills since then.

At roughly two months into treatment with insurance coverage the total is already breaking $800.

I don’t share this information (or anything else on this blog, for that matter) for pity. I share it because people need to know. People need to know that Lyme disease is the fastest growing vector borne infectious disease in the country, with new infections between 300,000 and 1,000,000 per year. People need to know that thousands upon thousands of people are very sick, and need a lot of medical attention to get better – and that medical attention does not come cheap. $800 on two months of care is bargain for a Lyme patient. If I were to need intravenous antibiotics (which is still a possibility, though hopefully avoidable in my case) the out of pocket cost for that is tens of thousands of dollars – who can afford that? Certainly not someone who is unable to work due to their medical condition.

No one should have to face bankruptcy to recover from an illness obtained from a bug bite in this day and age. No one. And that is why I speak out, and will continue to speak out about The Cost of Getting Well.

So that brings you to the present. I found good medical care; my family is thankfully able to afford it and our basic needs, and I continue to adjust to my new normal, of my health being the main focus of my day to day life, and now a significant part of our budget.

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