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. Do you have a question for Jennifer? If so, email her at [email protected].

I have tried several different medications for Lyme and am not getting any better. Do you think I just need to own up to the possibility that this is simply my reality and I should resign myself to it?

No! Treating tick-borne illness is complicated. It often takes a lot of trial and error to find the right treatment protocol, especially since what works for one patient might not work for another. When youre not feeling well, its especially hard to be patient with the process. You just want to get better, and you dont have the energy to keep waiting and trying things. I understand that. But difficult as it is, if you give up now, you will make your current situation your longterm reality. There were so many moments in my journey with Lyme disease and two other tick-borne illnessesbabesia and Ehrlichia—that I wanted to just throw in the towel. Thank goodness I didnt, though. After many different medications over many years, I have been in remission for over a decade, and my life is better than I ever thought it could be.

I suggest keeping a daily log of your symptoms so that you can chart any small change, good or bad, and so you can also give a detailed report to your Lyme Literate Medical Doctor (LLMD), who may be able to tweak to your protocol to address any new issues. So many times my LLMD would say something like, Oh, now that Im hearing how brain fog is bothering you, I think we actually need to switch to an antibiotic that is better for neurological symptoms.” Or, The symptoms youre telling me about indicate inflammation, so I think we need to add an anti-inflammatory medication.” If this fine-tuning isnt working, it may be time to seek a second opinion from a different LLMD. Sometimes it helps to have someone evaluate your case with fresh eyes. Be sure that you have been checked for all tick-borne diseases and are being adequately treated for any co-infections since a single tick bite can give you multiple infections.

Finally, its important to remember that medication is only part of the equation when treating tick-borne illnesses. Other factors like diet, sleep hygiene, and stress play a role in your bodys ability to heal. You may want to try complementary therapies such as integrative manual therapy or neurofeedback to help your medication work more effectively. There is always something new to try; never, ever settle!

What does the future look like for you?

This is a great follow-up to the last question. The answer is, I dont really know, and thats a good thing. When I was completely bedridden over a decade ago, the future looked bleak. I never thought Id regain my independence. I wasnt even sure if Id ever be able to walk around the block again. But now I am living on my own, working, socializing, and exercising, and enjoying a full life.

My path to health wasn’t linear. After regaining some independence, I relapsed all the way back to the starting line. If the future looked bleak before, relapse made me feel downright desperate. But I made it through, and have been in remission for over a decade, now that I know how to really manage my life in the context of these chronic illnesses.

Each year of this decade has been better than the last. There have been dips, of course: flare-ups of Lyme or babesia, acute illnesses like COVID-19 (link: : https://globallymealliance.org/corona-with-a-twist-of-lyme/). But overall, Ive made incredible strides since moving to Boston and starting graduate school in 2011. I can teach more classes now than I could after earning my M.F.A. in 2014. I can read for longer periods of time without getting neurologically overwhelmed. I bounce back faster when I push my body too far. I can ski more runs, swim more laps, paddle for more hours than I could a few years ago.

So, who knows how much more progress I will make in the next few years. Maybe Ill be able to juggle even more work projects. Maybe Ill be on a book tour. Maybe Ill reduce some of my medications. Maybe I wont need an afternoon nap. I cant say for sure what the future holds, but Im confident that more will be possible than I can currently imagine.

You mentioned that you cant work a traditional full-time job, so you work a few part-time jobs that fit your schedule. How did you find those?

One of the hardest parts of living with chronic illnesses was accepting that I wasnt going to be able to go back to the rigorous schedule I kept before I became ill. In order to maintain my health, I have to pace myself physically and neurologically. I also need to do adjunct therapies every week, which eat up time in my schedule, and I need to nap every afternoon. These needs—which I had to learn to see as just that, needs and not restrictions make it impossible for me to work a 9 to 5 job.

So I had to think outside of the box. What did I love to do, and how could I do that work on a flexible schedule? Instead of my old full-time high school teaching position, I now teach as an adjunct, at a creative writing center, and at colleges. My classes are scheduled in the mornings or the evenings, and class prep time is on my own. I was able to combine my passions for Lyme awareness/advocacy and writing into these weekly blog posts. I do one-on-one consulting work with writers, reviewing their work at home and then setting convenient meeting times (thats even easier now, with meetings happening virtually).

The current climate is difficult because the economy was closed for so long, but its also a good time for patients like myself with unique scheduling needs because so many jobs have shifted to work-from-home. Therefore, you may now be able to find part-time work that offers a more flexible schedule than it previously did.

Moreover, I recently learned about Chronically Capable, an employment platform that aims to connect chronically ill patients with remote work-from-home jobs. I have no personal connection to or experience with this platform, but you might want to check it out. Its important to think about what you can do and what skills you have to offer, instead of worrying about what you cant do. 

That said, working while chronically ill is not easy. You may not be able to cover all of your expenses. To address that Global Lyme Alliance has put together a financial resource page where you can find information on federal and state assistance programs and other resources.

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

Dear Lyme Warrior…Help!

by Jennifer Crystal

Every few months, Jennifer Crystal devotes a column to answering your questions. Do you have a question for Jennifer? If so, email her at [email protected].

How do you know if antibiotics are working if you feel awful all the time?

Treatment for tick-borne illness can be tough because it can often make you feel worse before making you feel better. Spirochetes (Lyme bacteria) work hard to evade antibiotics by twisting deep into muscles, joints, and tissues. That process can worsen your symptoms. You will also likely experience Herxheimer reactions, when the antibiotics kill bacteria faster than your body can eliminate them. This causes a build-up of dead toxins that can make you feel awful. 

When I first started intravenous antibiotics, I felt worse than I ever had before. My doctor said, “This is good news. Stay the course.” My Herxheimer reaction told him that the antibiotics were working. It may take a while for you to start feeling improvement. The amount of time is different for each patient, depending on factors like co-infections, length of time before diagnosis, and tolerance of treatment. It took me a good six weeks of feeling worse before I started to make headway. 

The important question is, are you noticing any improvement at all, over weeks or months? A good way to chart progress is to keep a daily record of symptoms. If you truly haven’t noticed any change in symptoms, then it’s time to talk to your Lyme Literate Medical Doctor (LLMD) about possibly modifying your regimen. For example, you may be on the wrong antibiotics for your specific case. It can take some trial and error to find the right protocol for each patient. Your doctor may also have you pulse antibiotics; that is, taking breaks for days or weeks at a time to give your body a chance to detox and recover. 

Finally, if you are being treated for Lyme with antibiotics and also have a co-infection like babesia, you may only be fighting half the battle (babesia usually requires anti-malarial treatment). It’s important to be tested for other tick-borne diseases to make sure you are on the right medication, keeping in mind that a single tick-bite can give you several infections, each of which must be treated differently.  

Did you start to have a temper with your memory problems?

Once Lyme and other tick-borne illnesses cross the blood-brain barrier, they infect the central nervous system, which can cause a host of neurological issues. In addition to headaches, memory loss, brain fog, and “Lyme brain” you may also experience psychological effects like mood swings, depression, and anxiety. 

Though psychological symptoms are not the root cause of your tick-borne illness, they are still real and scary. Personality changes can take you or your loved ones by surprise. People who are generally calm and easy-going can suddenly become belligerent. In my post “It’s Ok to Be Angry”, I describe “going from 0 to 60 over something small just because I’m overtired.” So yes, I often did, and sometimes still do, lose my temper. For me, it’s not really related to memory loss, but to being neurologically overwhelmed and fatigued. I’m awfully cranky when I don’t get my afternoon nap or have a night full of crazy dreams and night sweats. 

Memory loss can sometimes frustrate me, but it hasn’t caused me to lose my temper. If that’s happening to you, first, be gentle with yourself;  your body is working hard to fight one or more tick-borne illnesses, and those illnesses may be impacting your nervous system. Second, talk to your LLMD about your short temper. It’s possible that psychiatric medication could help you. I have also found adjunct therapies like talk therapy, cognitive behavioral therapy, and neurofeedback to be helpful in dealing with the neurological and psychological manifestations of my tick-borne illnesses. 

Do you feel like you got your life back?

Yes and no. For many years while I was sick, all I could talk about was getting back to my old life. Before becoming too sick to work or care for myself, I’d lived a full life in Colorado, teaching high school English, ski instructing, and socializing with friends. I wanted to get back on that track. I even had a “Back to Life” party once I achieved remission. Though I didn’t return to Colorado, I tried to create a similar life in Vermont.

That plan failed, because it was too large a leap. I relapsed completely within three months, and had to start treatment all over again. I also had to learn what having a chronic illness really meant. I wasn’t going to be finished with it one day. I wasn’t going to go back to my old life. I had to find a way to move forward that allowed my illnesses to come with me. I had to find a new normal, long before that phrase became the term du jour of our current global pandemic. 

The new life I have created is happy and fulfilling. I can’t ski for as long as I used to, but I can spend a morning on the slopes. I can paddleboard, kayak, and swim. I can write. I teach part-time on a schedule that works with my physical needs. Once I accepted that I couldn’t have my old life back, it became much easier to focus on building a new one that in some ways is even better, because it’s more balanced.

More blogs:

Dear Lyme Warrior…Help!
What a Difference a Year Makes
Corona With a Twist of Lyme: Part 2

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

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]