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.

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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.


My Story: Part 2 – Something is Wrong

I started my antibiotics with an open mind. I told people in my life I should be just fine in a few weeks. As days passed, I felt no improvement. The headaches were unbearable. The pain was very intense, and just for reference regarding my pain tolerance – I gave birth to a nearly 9lb baby without drugs, and would willingly do it again. It was hard to lift my head, keep my eyes open, and communicate. My brain felt very foggy, and simple tasks felt very mentally taxing.

With the severe headaches and worrisome neurological symptoms, I asked my primary care doctor about having my brain checked out. She conferred with the Infectious Disease doctor in the practice, who said that my persistent 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 citing the persistent, severe headache, which at that point, had lasted a month. My MRI came back clear.

I started going to acupuncture at this time, again, with an open mind, not having any prior experience with it, but figuring it couldn’t hurt. My acupuncturist had treated many patients with Lyme and so was very familiar with what I was going through. The weekly acupuncture seemed to help a bit with the headache and the anxiety that I was feeling about the whole situation.

At the end of the 3 week course of doxycycline, I had very little improvement. I was still completely unable to go about my daily business. My primary care doctor conferred again with the Infectious Disease specialist, 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. Now, I had read in my own research that some patients don’t feel better until some time after the antibiotics were done, so I decided to again, keep an open mind, and hope for the best.

I continued weekly acupuncture, rest, and vitamins. I felt a little better, but still not well. If I rested for 2-3 whole days, I could feel “okay” for almost 1 whole day. Sometimes I could rally and be active for a whole day, but I would always pay the price, with more head pain, aching body, and foggy brain.

December came, and I started to feel a little better still. I got excited and thought, “This is it! It worked! I’m better!” I went about at full speed, holiday shopping and trying to catch up on some tasks I had let slide since getting sick in September. I made it through on adrenaline and hope for about 5 days, and then I CRASHED. I was not better. I was right back where I’d been for nearly 3 months.

At this point, I started to realize that I was not one of “the people who just get better.” This was hard for me to process. I had seen a lot of scary stuff in my internet research. I saw the stories of so many people who were so, so sick and couldn’t get better. I read about LLMDs (Lyme Literate Medical Doctors), and how they were hard to find, and sometimes impossible to afford. I read about the schism in the medical community – those who believe that Lyme Disease can and often does become chronic, and those who completely deny that to be true.

I decided I would try out the Infectious Disease doctor, even though he had not yet been very helpful. After all, he did say to call in a month if I wasn’t better. So I called. They gave me an appointment…for February. So I was to hang around and be sick for another month…again.

Up Next: Part 3 – The Cost of Getting Well

My Story: Part 1 – Diagnosis

I don’t know when I was infected with Lyme Disease. Based on my journey thus far, it would seem that I haven’t had it, say, since I was 2 years old (I would be in much worse shape), but in all likelihood, I did not just get bit 6 months ago (because of how sick I am, and how I have responded to treatment).  Looking back over my history, there are some clues that could mean that I already had Lyme when I was X years old, or Y years old; or those could just be coincidences – Lyme is the “Great Imitator,” after all. There’s no sure fire way to know.

The start of my Lyme For Sure story is a fever in September 2014. I had been very busy working as a doula all summer. We had sold our house under distress (scary neighbor situation) and were moving. My son had broken his leg. Things were very stressful. Then I got a fever that would not go away.

I stayed around 104°F for 5 days straight. My head was pounding, my neck was stiff, I had no appetite, and I was completely exhausted. After several days, I went to the doctor, who told me it was a bad viral infection. A week later, I was still sick, and a new symptom had appeared – large red and purple welts on my legs which were growing, multiplying, and spreading. They didn’t itch or really hurt, but they sure did scare the hell out of me. Back to the doctor I went, where a Lyme test was administered “just in case,” (even though the welts did not look like the signature bullseye) because some of my other symptoms could be Lyme, and this is Massachusetts – one of the top states for Lyme. I was told the welts were probably just erythema nodosom, which is basically a weird presentation of a virus, given a z-pack for what was probably a bad sinus infection (the head/neck pain) and sent on my way.

The z-pack helped a bit, but not much. About a week later I got a phone call that the Lyme Tests, ELISA & Western Blot, were positive. My primary care doctor prescribed me the routine course of antibiotics.

What I know now is that my positive Lyme Test is nearly akin to a Golden Ticket. The ELISA & Western Blot tests produce numerous false negatives. ELISA misses 35% of proven Lyme cultures. Some studies indicate that up to 50% of Lyme patients have received false negative test results. The average Lyme patient sees 5 doctors over 2 years before getting a diagnosis. So to be able to answer the question of “What is wrong with me?” within less than a month of being debilitated, was incredibly fortunate.

So very many patients are not so fortunate and suffer for years in terrible health, without answers. Chronic Lyme symptoms can lead to false diagnoses of Fibromyalgia, Chronic Fatigue Syndrome, MS, and ALS, just to name a few.

This is why more research and attention for Lyme Disease is so important. Estimates put the rate of infection in United States alone between 300,000 yearly on the low end, and 1,000,000 yearly on the high end.And we don’t even have an accurate test for diagnosis!

I began my course of antibiotics with an open mind. I did some research about Lyme Disease, but was pretty overwhelmed by what I found, so I stepped away from Google, and hoped for the best. “Hopefully I’ll be one of the ones who just gets better,” I thought to myself.

Up Next: Part 2 – Something Is Wrong

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