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I was diagnosed with Lyme Disease in October 2014. In mid-September of that year, I came down with what appeared to be a terrible virus that I just couldn’t shake. I had a fever of 104°F for five days straight. My body ached, I was exhausted, and I had no appetite. I had a relentless, intense headache that ibuprofen couldn’t touch, and my neck was stiff. I felt foggy – it was hard to think or make decisions. After two weeks with no improvement, I was fortunate that a couple of my symptoms caused my doctor to suggest a Lyme Disease test “just in case,” and even more fortunate that I tested positive.

I didn’t know at the time that a positive Lyme Disease test is nearly akin to a golden ticket, considering the incredibly high amount of false negatives that the ELISA/Western Blot test yields. The average Lyme patient sees five doctors over the course of two years before receiving an accurate diagnosis. To have the question of, “What’s wrong with me?” answered within less than a month of becoming debilitated is something I am incredibly grateful for.

I was prescribed the CDC protocol for Lyme Disease treatment – three weeks of antibiotics. I was told I should be just fine after that. Worried about the headaches and neurological problems I was experiencing, I asked my doctor about having my brain checked out. She conferred with the Infectious Disease doctor in the practice, who said that my severe headaches, sudden brain fog, and forgetfulness were not enough cause to suspect neurological Lyme, and that I should be fine with the routine antibiotics. No seal of approval from the ID doc meant no insurance coverage for an MRI. My doctor, being empathetic and resourceful, decided that I could and should have the MRI – she would simply omit “Lyme” from the reason for the order. Instead, she cited the persistent, severe headache, which at that point had lasted a month.

My MRI came back clear, but at the end of my antibiotic protocol, I had seen very little improvement. The headache was still unbearable. My brain still felt foggy, making simple tasks feel very mentally taxing, and my short-term memory was terrible. I was still crushed by fatigue and unable to carry on with my usual daily activity. My primary care doctor again conferred with the Infectious Disease doctor, who said that it is normal for patients to not yet feel better at the end of the antibiotics protocol, and that I should just wait and come back if I did not feel better in a month. To underline this point – I had been sick for over a month, and was told to just hang around and be sick for another month before I warranted additional care.

I decided to keep an open mind and hope for the best, but I did not get better. I continued to be sick through November and into December. I called the Infectious Disease doctor back to report that I still was not better, and was given an appointment…that was over a month away. So I was to hang around, sick and debilitated, for another several weeks.

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 the patient tests 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.

The CDC refuses to acknowledge that many Lyme patients are not cured by short-term antibiotics. Which means treatment for patients who continue to suffer with Lyme is often not covered by insurance, resulting in countless patients who are unable to afford the treatment that they need to get well.

Doctors who do understand Chronic Lyme Disease (that is, any Lyme Disease not cured by short-term antibiotics, including Neurological Lyme Disease and Late-Stage Lyme Disease) and offer longer term treatment for patients are often cloaked in secrecy. The names of these doctors only spread by word of mouth and through secret lists maintained by Lyme Disease advocacy groups. Many of them do not take insurance. 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 2015, while sitting around waiting to get well, still weeks from my scheduled Infectious Disease appointment, 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 four months of being debilitated by Lyme, and I felt as though I could leave no 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 (a state where Lyme Disease is prevalent), as many patients have to travel very far, incurring flight and lodging costs to see an LLMD. I investigated each one, and I 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 got 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. Plans were immediately 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. 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, and 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 spent another $160 on refills before my two-month follow-up visit, when I spent an additional $200 on more pills.

At roughly three months into treatment with insurance coverage the total is already breaking $1000.

I don’t share this information 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 an estimated 300,000 new cases each 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. One thousand dollars on three months of care is a 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 us 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.

[Photo credits to Brit Frerotte]

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