How I learned the truth about Chronic Lyme Disease

In September 2014, I came down with a flu-like illness. I had a high fever, body aches, extreme fatigue, and a relentless, pounding headache. With no improvement after two weeks my doctor started running tests, one of which was for Lyme Disease. The Lyme test came back positive. I was told that after a few weeks of taking antibiotics, I’d be fine.

I took the antibiotics as prescribed, and got plenty of rest and fluids as instructed, but I did not get better. My flu-like symptoms persisted. The headache was constant, and felt like a knife through my head. Ibuprofen couldn’t touch it. I felt very foggy mentally. I was often having difficulty communicating, especially when tired, and my memory was very poor. One day, I went to write a check, and couldn’t remember how. Never before in my life had I experienced this kind of cognitive difficulties.

When I brought up my concerns with my doctor, who conferred with an Infectious Disease doctor, I was instructed to wait another month to get better without further medical action. I was assured that the antibiotics I took had cured the Lyme Disease, and it may just take a little more time for my symptoms to go away. If I was still ill in a month, I could call back for a follow-up appointment. I listened to the doctors and waited. A month later, I still was not better.

I called the Infectious Disease doctor to schedule an appointment as instructed. The appointment they offered me was another month away. Weeks passed. I still was not better.

During that time, I did some of my own research about Lyme Disease. I really didn’t know anything about Lyme, and I wanted to educate myself about what was making me so sick. It didn’t take long in my research to discover the great controversy of Lyme Disease – chronic infection and long-term treatment. I found many Lyme patients’ stories about their ongoing struggles with the disease. I also found that many healthcare officials and providers claimed Chronic Lyme Disease doesn’t exist. The CDC and IDSA (Infectious Disease Society of America) both take the stance that Lyme Disease is most often cured by a short course of antibiotics, and that people with lingering problems are rare, and do not require further treatment. After falling down the internet rabbit hole of Lyme Disease information, I hadn’t a clue as to who to believe.

Were all the people with Chronic Lyme Disease nuts? Were the Lyme Literate doctors (LLMDs) I was reading about quacks? Or was it the CDC, IDSA, and Lyme deniers that were wrong? I was dumbfounded.

Throughout the first few months of my illness, I tried to put the controversy out of my mind. “I’ll get better,” I thought. “I’ll worry about chronic Lyme and LLMDs if the time comes, and it probably won’t! Maybe all those Lyme people are crazy.”

At the time I fell ill, I was sole proprietor of my own business as a postpartum doula, caring for families with newborn babies. My illness forced me to cut off care early with clients. Waiting to get better as instructed, and waiting for an appointment with the Infectious Disease doctor, the days added up…to four months. My business was, in effect, closed.

I was having some good days, but for the  most part, I had little to no improvement. I still had a persistent migraine headache. I was exhausted – prior to my illness I was never one for naps, but I was needing them regularly just to have enough energy to function at a minimal level. My brain was very foggy. I had trouble finding words in conversation. I was unable to drive on highways because I felt I couldn’t keep up cognitively with both operating the vehicle and navigating safely. The right side of my face and body was often visibly drooping and felt heavy. My neck was often stiff. I was a mess. My PCP had no answers or treatment options for me. The Infectious Disease doctor, who I hadn’t even met yet, seemed very unconvinced that I needed further medical care and saw nothing wrong with me continuing to wait and suffer for another month, on top of the four that had already passed.

I was a previously healthy 29-year-old mother whose life had come to a halt, and I desperately wanted to feel well again. I wanted to have energy to run and play with my young son again. I wanted to return to my work as a postpartum doula. I wanted my life back.

So I took a leap of faith and sought out an LLMD. I contacted ILADS (International Lyme and Associated Diseases Society) for a list of options in my area. I knew it could be costly, and I had no guarantee that I wouldn’t be going to a “quack,” but I wasn’t willing to accept the alternative of continuing to watch my life pass me by. At the end of January 2015, I had my first appointment with an LLMD.

As I got to know my LLMD and continued to educate myself independently, I began to understand where those “crazy Lyme people” were coming from.

I learned that each Lyme patient’s case is unique, and each LLMD has their own road map for treatment, which is then adjusted through trial and error based on each patient’s response and specific situation. I learned that the CDC’s denial of the need for Lyme Disease treatment beyond a short course of antibiotics has closed the minds of many doctors who refuse to listen to evidence-based treatment plans recommended by many of their colleagues, ILADS, and LLMDs around the world.

I learned that I could have a long fight ahead of me to regain my health, but that I was also more fortunate than many, as I found my way to good treatment within months of falling ill, while so many suffer through years of misdiagnoses and lack of treatment.

I learned that patients with Lyme Disease often have one or more co-infections as well, with equally debilitating symptoms, and even less information about how to treat them. I learned that Lyme bacteria can change forms, hide from antibiotics, and persist after treatment. I learned that many doctors and scientists are working tirelessly, researching and experimenting, trying to find answers for the thousands and thousands of people fighting this devastating disease.

I learned that there are success stories. That LLMDs are able to help their patients recover through long-term treatments. That it takes time, and can be very complicated, but there is plenty of evidence that long-term treatment for Lyme Disease is both needed and successful in many cases.

My LLMD was optimistic about my case from the start of my treatment. She suggested that I might be back on my feet in few months. At that point, a few more months sounded like a long time. She ran a wide variety of lab tests to get a very comprehensive view of my health and current state, and we began antibiotic treatment. I was also put on a supplement regimen to help support my immune system, repair nutrient deficiencies and lessen the severity of some of my symptoms. My LLMD follows treatment plans very closely aligned with what Lyme expert Dr. Richard Horowitz outlines in his book, Why Can’t I Get Better?

Lyme Disease is a tricky little bugger. Treating it is like peeling back layers of an onion. As some of it dies, new symptoms can come to the forefront. My migraine headaches were relieved promptly after my treatment with my LLMD began. Soon, new (classic Lyme) symptoms emerged – neuropathy (tingling / nerve pain) in my limbs, and very severe joint pain. The flu-like body aches I had back in September 2014 returned. But I would also have good days, and throughout my treatment my good days would become better. I even started to string a few good days in a row.

Now it is July 2016, twenty-two months after I spiked that fever and my life changed, and I am still fighting for my health. I have been doing everything “right” all along, and taking care of myself the best I can. My treatment has been aggressive and thorough. I am now facing the next and most aggressive phase of my treatment, which I am hopeful will yield success. From where I stand now, I look back and see what I’ve endured and what I’ve learned. I look ahead and know that even after I am “better” (there is no test that can accurately confirm a person is “cured” of Lyme Disease), I may still face Lyme-related challenges in my future, and it will take me a long time to get my body and mind back to their pre-illness state.

The number one thing I have learned for sure, is that Chronic Lyme Disease is real. I know because I have it.

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Turning Lyme(s) into Lemonade

As I mentioned here, May was Lyme Disease Awareness month. (Phew, guess I’ve been busy being sick! Two months late with this post!!) I am acutely aware of Lyme Disease every day, but prior to my diagnosis, I didn’t know much at all about disease, and many people still don’t. This is one reason why I share so much about my experience with Lyme. Another other reason being that Lyme effects my daily life so much, it doesn’t take long in talking to me before it comes up one way or another – I’m a becoming a professional Debbie Downer in that respect. My personal tendency to drag down perfectly good conversations with dreary medical updates notwithstanding, Lyme Disease is an illness that could really benefit from some awareness raising. Why is that? Because it is largely preventable.

Did you know that children are the highest risk group for Lyme Disease infection? They are. Children, when educated about tick safety, are also excellent reminders to do tick checks! My son is like the Tick Police™ as soon as spring comes. Any time that we’ve been out at the park or playing in the grass, that evening as he gets ready for pajamas he’ll strip down and lift his arms in the air, announcing “TICK CHECK!”

When I noticed how keenly he took to this responsibility, and combined it with the knowledge of how high risk children are for Lyme, the answer seemed clear – start ’em young! Educate his peers, and turn them all into little Lyme-fighting Tick Police Officers! I had this light bulb moment in Spring 2015, and promptly starting putting together a presentation for his pre-K class about tick safety and Lyme prevention.20150325_113410

It went wonderfully! I brought in lime slices for the kids to take the Lyme Challenge, made poster boards to explain the basics of tick safety, and created handouts to be sent home to their parents with more detailed information.FB_IMG_1427315615537

This year, I approached my son’s kindergarten teacher about doing the same. She loved the idea, and I am happy to report that it was once again a success.IMG_20160520_154947

I am even happier to report the wonderful feedback I’ve received from other parents. Each of the times I gave this presentation, a part of me has worried that the kids would be scared. That my fellow parents would be rolling their eyes, saying, “Grrrrrrrreeeeeat, now my kid is scared of every ant and little bug s/he sees! Thanks a lot, Annoying Lyme Mom!!!” But parents in my son’s class reported back to me that their kids were excited to share “important” information with their parents. The parents thanked me for educating them, for pushing the bug spray, and empowering the kids with prevention tools they needed.

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I understand that we all can suffer from awareness fatigue with so many various causes popping up in our social media these days, but it all starts from a good place. People who are touched by an illness or issue, wanting to help others understand what they are going through, or prevent going through it themselves.

Making lemonade.

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Limeade?

Limeaid?

Lymonade?

You get it.