Tag Archives: Lyme disease questions answered

lyme warrior

Dear Lyme Warrior…Help!

By Jennifer Crystal

Every few months, Jennifer Crystal devotes a column to answering your questions. Below she answers some that she’s recently received. Do you have a question for Jennifer? If so, email her at [email protected].

Did you stop your medication during a Herxheimer reaction?

There is no right or wrong answer to this question; it all depends what works best for you. A Herxheimer reaction occurs when antibiotics kill Lyme bacteria faster than your body can eliminate it, causing a build-up of dead toxins. The process can make you feel downright awful. Often a Herx” involves an increase in symptoms such as fatigue, night sweats, migraines, and joint pain.

The body needs time to eliminate the killed bacteria, and for some patients the best way to do that is to give it a break from antibiotics, so that more build up isnt happening while your system is working to detox. Some doctors advise a pulsing method, taking antibiotics for a certain period and then stopping them for a certain amount of time, for precisely this reason. Other doctors have patients push through the Herx with continued antibiotic treatment.

For me, I almost always stayed the course throughout my Herxheimer reactions, even though I felt terrible during those periods. When symptoms got unbearable, my doctor would advise me to take a one-or-two day break from antibiotics, and that helped. Talk with your Lyme Literate Medical Doctor (LLMD) about the duration and severity of your Herxheimer reactions, and decide together on the best course for you. Your doctor can also advise you on ways to help your body with the detox process itself.

My child wants to go to college in the Northeast, but Im nervous about sending her somewhere where Lyme is so prevalent. What do you advise?

Once you or a family member has been impacted by tick-borne illness, your whole perspective on the outdoors changes. Sometimes I want to wrap myself in a bubble and stay indoors. But I cant live in fear—besides, ticks can come inside, too!.

What I can do is be vigilant. To deny myself time out of doors would be to deny myself that which brings me the most joy. However, I no longer go walking in the woods or running through high grasses. I stick to worn or paved paths, stay away from lawns when possible, and do activities that are on the water or in the snow. I always wear bug spray, and undergo a thorough tick check after returning inside.

Nevertheless, I still have fears about getting another tick bite, so I can understand why you have concerns about sending your child to a highly endemic tick area. While New England does have a great deal of infected ticks, there are now documented cases of Lyme in all 50 states. Your child could get a tick bite while walking through the woods in the Northwest or the Southeast; ticks are no longer limited to New England. And while ticks can live on campus lawns, its less likely that your child will get a tick bite there, no matter what part of the country it’s in, than if he or she went for an off-campus hike.

I went to school in Vermont. That rural college won my heart the minute I set foot on campus. I think its more important to go to a school you love, and take whatever health precautions you need to while there—prevention, bug spray, rigorous post-outdoors tick checks— than to go to a school that doesnt feel right, just because you might have less chance of getting a tick bite there.

What type of brain scan did you get?

In some of my articles, I have mentioned having a brain scan that showed inflammation and a lack of oxygen on the left side of my brain. This was called a SPECT scan, which can show more than an MRI. But that was over a decade ago; there may be even better scans available today.

Related blogs:
What Does it Mean to Herx?
Dealing with Lyme-related Fear
Stop the Music! How to X Out the Songs and Words That Keep Playing in Your Head

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].

lyme warrior_lyme Q&A

Dear Lyme Warrior…Help!

by Jennifer Crystal

Every few months, Jennifer Crystal devotes a column to answering your questions. Here are her answers to some recently received questions. Do you have a question for Jennifer? Email her at [email protected].

How do I force myself to eat healthy, despite severe cravings for bad food, and an emotional response (shame, guilt, anger) when I eat it?

When you’re feeling sick and so much is going wrong in your life, you reach for comfort foods, something that might temporarily make you feel better. Beyond chicken noodle soup, you want ice cream or cookies or things that taste good. But  eating such foods can actually make Lyme disease worse. Lyme bacteria thrive on yeast and sugar. When you consume such foods, you’re not just feeding yourself—you’re also feeding the bacteria, encouraging it to grow and spread. The bacteria want more of it, which is what causes you such intense cravings. Moreover, yeast and sugar can cause intestinal yeast overgrowth, which can weaken your immune system. So not only are you increasing the Lyme bacteria, but you’re decreasing your body’s ability to fight it.

If this isn’t enough to keep you away from bad food, there is, as you mentioned, the emotional response to it. The high of a tasty cookie is quickly lost when you feel upset about eating it. Tick-borne disease already causes plenty of guilt, shame, and anger—for being sick, for being dependent on others, for not being able to meet social expectations. You don’t have control over many of those things.

Food is one thing you do control, and I encourage you to look at that as a positive tool for returning to health. Nourish your body with fuel that is full of nutrients, foods that advance the healing process rather than impede it. And when you deserve a treat, find a recipe for gluten-free, sugar-free cookies, or eat a small amount of dark chocolate. Find a treat that works for you and enjoy it sparingly, as a reward for fueling your body correctly.

How difficult was it for you to admit to yourself that you couldn’t work full-time?

Very difficult. I still struggle with it from time to time. When you’re once independent and successful, it’s very hard to become dependent on others. Society expects you to keep going, to achieve more, to earn more. When you’re healthy, you have the ability to stay on that track. Chronic illness throws you off, and that fall can really hurt your pride. I have wrestled with a lot of guilt and shame about becoming dependent, and even as I’ve been able to start working part-time, it still bothers me that I’m not fully returned to the independent, high-achieving track from which I fell.

Along the way, I’ve learned a few things. The first is that getting a tick-borne illness was not my fault. I didn’t ask the tick to bite me. I didn’t suddenly say, “You know what, I just don’t feel like working anymore.” I didn’t make any bad choices (besides maybe pushing myself too hard!) that caused me to lose my job. It’s essential to forgive yourself for being sick and recognize that dependence is not a choice but a necessity..

When I first started to get well, I wanted to dive back to my former independent lifestyle, and I worked way too hard as an Editorial Assistant for a magazine. I put in too many hours, and that took a toll on me physically and mentally. Within three months, I relapsed. I was back at square one, bedridden and unable to work. I learned that jumping right into full-time work pushed this Lyme patient too far and was counter-productive.

Once I recovered from my relapse—a two-year battle—I re-entered the workforce in a different way, with a different mindset. I realized that tick-borne illness was always going to be with me, and I had to find a way to live my life in a way that took my health history into account. I took on part-time jobs slowly. As I built my health up over time, I added  commitments as I could take them on, always  ensuring that my health was my number one priority.

Because I have to rest in the afternoon, I won’t ever be able to work a 9-5 job, but there are other jobs with more flexible hours (like teaching and writing) that I can do. What can you be able to do that works within your limitations? You may find that there are more opportunities than you might have realized in your healthier days.

jennifer crystal

Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She has written a memoir, One Tick Stopped the Clock for which she is seeking representation. Contact her at: 

[email protected]