Tag Archives: Lyme disease journey

The Leaps of Lyme

by Jennifer Crystal

This year is a leap year”, meaning that every four years we add February 29th to the calendar. This leap year got me thinking about the many leaps that are involved in fighting Lyme disease.

Over 427,000 people are diagnosed each year with Lyme—more than HIV and breast cancer combined—and these patients find themselves forced to take a leap into unfamiliar territory. There, they’ll find many contradictory messages, many different stories of what constitutes a typical case and its treatment , all of which usually comes amid ongoing questions about their own diagnosis.

Being diagnosed with Lyme disease—especially when its not a clear-cut case with a positive blood test or a bulls-eye rash, or a late-stage case complicated by co-infections—requires many leaps of faith. Patients must have faith in their Lyme Literate Medical Doctor (LLMD), often found only after dozens of other doctors have let them down. They need faith in their treatment, which can take time to work. Patients will likely experience Herxheimer reactions, and it can take some trial and error to find the right cocktail of medications for each case of tick-borne disease. So it’s not surprising when patients wonder, “Am I on the right path?” “Do I really have Lyme?” “Am I working with the right doctor?”

I asked these questions, too, many times in my years-long journey from diagnosis to treatment to recovery. I suffered not only from Lyme disease, but from two other tick-borne co-infections—ehrlichia, and babesia—as well as chronic Epstein-Barr virus. When I saw an improvement in my symptoms I felt good about the leap of faith I’d taken in my doctors and my protocol, but when I suffered a Herxheimer reaction—or worse, when I suffered a complete relapse after going off treatment—that faith faltered. I sought second opinions. I tried different medications. I questioned the progress I had made. I questioned myself.

Luckily, my friends and my medical team would step in to remind me of the predictably relapsing nature of my illnesses. They reminded me, too, of how far I had come, of all the ways I’d had confidence in my care until then, of my positive blood work, and of other biomarker tests I’d undergone (like tests for inflammation and a SPECT scan that showed I wasn’t getting enough oxygen to part of my brain) that supported previous clinical observations. They told me to stay the course, and to have hope that I would one day live a healthy life. I took that leap of faith, and I’m so grateful I did. Had I failed to, Im quite certain I’d still be bedridden to this day. Instead, I am enjoying remission that’s allowed me to live a fulfilling life.

Battling tick-borne disease also involves other leaps that are not always so positive. For example, as soon as I felt any improvement in symptoms, I wanted to get right back to my old life and work, exercise, and socialize. Inevitably, doing so too precipitously would cause me to crash. This happened on small and large scales. When I was convalescing at my parents’ home and on intravenous antibiotics, I might feel a surge of energy for a couple days and spend it going meetingfriends, driving myself to appointments, or walking to the end of the block. My doctor said this was a common folly of Lyme patients, wanting to do too much too soon and then paying the price.

This happened on a much larger scale when I first achieved remission and went off antibiotics entirely. I moved out of state and started a new job. These transitions were far too large a leap, and without proper autoimmune defenses, the Lyme bacteria came raging back within a few months. The second time I got to remission, I took much smaller steps, moving only a few minutes away from my parents, volunteering before committing to a rigorous work schedule, and then working only part-time. I learned that Lyme is best fought with large leaps of faith, yes, but with smaller steps of action.

Finally, recovering from tick-borne disease often involves leaps in time. I lost the second half of my twenties to Lyme, and those were years I can never get back. When I finally re-emerged, so to speak, I found myself at a different life stage than my peers. This is the time-warp that tick-borne illnesses can cause, which I discussed in a previous post, and this “lost time” has remained an issue for me to this day, though Ive learned to accept that Im living life at my own pace.

Its another leap of faith—a belief in oneself—to know that one’s inability to meet a typical timeline for life milestones does not mean an inability to meet one’s life goals. In my case, since my previous leaps of faith yielded positive results, Ill take this one, too, as I continue to make small steps forward.


jennifer crystal_2

Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. Her memoir about her medical journey is forthcoming. Contact her at [email protected].

Woman looking back

2020 Vision For Lyme Warriors

by Jennifer Crystal

Here are some things I now know for sure, things I wish I’d known, looking back on my Lyme Journey

As the saying goes, hindsight is 20/20.” Its easy for us to look back from the vantage point of experience and say, I wish Id done X,” or If only I could have known Y.” It isnt always so easy to see those options when were living our daily lives, making real-time decisions based on the information we have at the moment.

When I look back across my 20-year health journey, I recall many points of confusion, fear, and desperation. I remember the mixed messages from health professionals. I think back on the skepticism from those who were supposed to help me. I recollect the disbelief in myself, in what my body was telling me. I know so much now that I wish Id known then. And while I cant change my past, I hope I can use it to help make another patients health journey a little easier.

Here are some things I now know for sure, things I wish Id known at various crucial points of my own journey:

I really was sick.

When I first developed a rash, and then hypoglycemia, and then a debilitating flu at age 19, I was not going crazy. I was not stressed. I was not run down. I did not need to exercise more. The symptoms were not psychosomatic. I had been bitten by a tick and was sick with real physical illnesses, namely Lyme and two of its co-infections Babesia and Ehrlichia. It would be another eight years until I was properly diagnosed. That delay was so extensive in part because of the disbelief or just plain ignorance of many health professionals. Naturally, I believed them too.

If I had been accurately diagnosed promptly, my whole life would have been different.

I was bitten by a tick in 1997, and perhaps again in 2001 or 2002, but I wasnt tested for tick-borne diseases until 2005. Testing is faulty now and was even faultier then, so even if Id been tested for Lyme or co-infections, I might have gotten a false negative and been told I was well.

But I also might have gotten a true positive. If Id seen a Lyme Literate Medical Doctor (LLMD)—or even known that such a specialist existed then—they might have made a clinical diagnosis right away. I might have taken just three weeks of recommended antibiotics and been fine.

Instead, I developed chronic infections that, 20 years later, are in remission but by no means cured. I went through years of intense antibiotic therapy, including intravenous antibiotics, and I’m still on medications to this day. I dont live my life with regret, but I would regret it if you were in the same position and didnt learn from my story. If you discover a tick bite, or have symptoms of tick-borne illness, you dont have to suffer for years without treatment. You can find a good LLMD in your area and get a head start on your return to wellness.

If a loved one has symptoms and doesnt know about Lyme disease, or doesnt know how to find a doctor, offer to go through the process with them. Remember that Lyme patients are often frightened, anxious, and even neurologically impaired. They need real help when it comes to navigating their path.

Lyme Literacy improves over time.

I dont blame the many health practitioners who missed my case in 1997, because tick-borne disease wasnt on the radar then. I believe that if I presented now with the same symptoms as I did in 1997, at least one of those practitioners would think about the possibility of tick-borne disease. Thanks to media coverage, increased awareness and education efforts, and, unfortunately, the expanding number of cases, Lyme literacy has greatly improved in the last 20 years. That should give us hope for the future.

Healing is not linear.

It took me a long time to get diagnosed. Therefore it took me a long time to get well. Along the way, there were many bumps in the road, and even some large potholes. Once I was diagnosed, I figured Id take medicine and slowly get better, as one would from bronchitis or a sinus infection. But thats not how it works with tick-borne disease. It can take a while for your LLMD to figure out the best treatment protocol for you since each case is unique. You will likely experience a nasty Herxheimer reaction, which means you will feel worse before feeling better. As I discussed in my Gratitude for the Long Game post, the journey through tick-borne disease is an up and down process like a spiraling helix that ultimately stretches towards wellness.

Not everyone will get it.

Lyme patients often spend time and energy they dont have trying to convince doctors and loved ones that they really are sick. Once they are diagnosed, they may feel a sense of validation, but that doesnt mean that everyone will immediately understand what theyre going through. I still knew people who didnt believe me, those who thought my doctor was a quack, those who thought I just needed to push through it.” These people didnt understand that Lyme is complicated and comes in myriad forms; they didnt want to hear about chronic illness and asked, Arent you over that yet?”

At first, I wasted a lot of energy trying to convince these people of the truth. But eventually I realized, I dont need them to understand. The only people who really need to get it are my doctor and me. I’m focused now on the people in my life who do want to understand, the folks who have offered unconditional support. I stopped worrying about the others. I don’t need their approval.

I came to understand that many of those people were well-intentioned, but were reacting out of fear or ignorance. Some of them did come around. My own familys understanding of tick-borne illness blossomed alongside my own as they eventually read the books, watched the documentaries, attended the conferences, and accompanied me to doctors appointments. So while I have no more time to lavish on the doubters, I do hope that one day they will see the light.

No two cases are alike.

Every case of tick-borne disease is different; that means every treatment protocol is different, too. Patients write all the time to ask me what particular medication I took. But it doesnt help for me to say which medications Ive taken. Fact is, I’ve used many different combinations over time but never a single magic cocktail. That’s because what worked for me might not work for you, and vice-versa. It can be easy to think, “Well antibiotic X worked for her in five weeks, so it should work for me too.” Or, “My friend got better from Lyme in one month, so my son should, too.” Its imperative to remember that each case is unique. Be patient with yourself, or with your loved one, knowing that each body heals at its own pace.

It gets better.

When I was bedridden with exhaustion, migraines, aching joints, and insomnia, I never, ever believed I could have gotten as well as I have. I am heading into the new decade still managing my tick-borne illnesses, but I’m doing it in the context of a full and happy life. Reflecting on my past has given me gratitude, wisdom, and resilience, and those tools will help me see clearly as I step into 2020. May your vision also be clear, and your new year bright!


jennifer crystal_2

Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. Her memoir about her medical journey is forthcoming. Contact her at [email protected].