Tag Archives: Lyme disease Q&A

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_lyme Q&A

Dear Lyme Warrior…Help!

By Jennifer Crystal

Every couple months, Lyme Warrior Jennifer Crystal devotes a column to answering her readers’ questions. Here are her answers to questions she is frequently asked.

I found a bullseye rash, but my doctor thinks I should I wait until I have symptoms before starting treatment. Do you agree?

No. A bullseye rash is a telltale sign of Lyme disease. Symptoms can take weeks, months, or even years to develop, and by that point, the infection will be so advanced that it will require much longer treatment than it would have at the onset. With tick-borne disease, I always recommend erring on the side of caution. Had I been treated when I discovered my atypical erythema migrans rash (a blotchy series of red dots), my illnesses would not have become chronic and I would not still be dealing with them 20 years later.

In addition to being treated for Lyme, you should also be tested for co-infections. If your doctor is not a Lyme Literate Medical Doctor (LLMD), it’s important that you find one who is. You can find someone in your area through GLA’s “Find A Medical Professional” link.

What helps with brain fog?

Brain fog is one of the most frustrating symptoms of neurological tick-borne disease. It feels like your brain is filling with cotton. In addition to pressure and headaches, this feeling manifests in slowed thinking memory loss, difficulty coming up with words or a tendency to scramble word order. At my worst points, brain fog made it impossible for me to write, watch TV, or spend time on a computer.

For me, the biggest factors in eliminating brain fog were time and rest. I needed to give the antibiotics time to work. Due to Herxheimer reactions, my neurological symptoms got worse before they got better, but they did improve in time. You didn’t get sick overnight, and you aren’t going to get better quickly, either. As tough as it is, try to remember that you are a patient: your job literally is to wait, to give your body and brain the time they need to heal.

Sleep helps tremendously with brain fog, but insomnia is also a major symptom of neurological Lyme disease. Once I started getting more restorative rest—which I achieved through a combination of antibiotic treatment, sleep medication, and neurofeedback sessions—my brain fog decreased. It still flares up when I push myself by reading or writing for too long, watch an action-packed movie, or spend time in a crowded and loud environment.

You will have to learn your own limits, and be willing to abide by them. I avoid loud parties or concerts, and sometimes have to put down a book or walk away from a TV show even when I don’t want to. It’s hard to be strict with yourself, but it’s worth it to avoid brain fog.

My doctor wants to put a PICC (Peripherally Inserted Central Catheter) line in and start intravenous antibiotics. That’s a very scary thought to me. What are your thoughts on doing IV?

 While only you and your LLMD can decide the best course of action for your particular case, I can tell you about my own experience with a PICC line. When I was initially diagnosed—eight years after being bitten by a tick—my doctor had me try oral antibiotics for three months. My improvement was very slow. My doctor then recommended a PICC line, for two reasons. First, the intravenous antibiotics would kill the disease bacteria faster, and, second, they would also take pressure off my stomach since oral antibiotics can have a number of abdominal side effects associated with them.

Like you, I was very scared to try this option, but I’m glad I did. A nurse at my doctor’s office put the line in, and it didn’t hurt any more than having a regular IV inserted. I had a chest x-ray at a hospital to make sure that the PICC was correctly aligned with my heart, and then did my first dose back in the doctor’s office to make sure everything went smoothly. These steps helped me to feel safe. The nurse taught me how to infuse my antibiotics and clean my line so I was comfortable with the process before I left the office. He then came to my house once a week to change my dressing and take blood. You’ll want to make sure your doctor has all these steps in place for you, too.

Having a PICC line can be frustrating because you can’t get it wet. I wore a special sleeve when I did dishes, took baths, or had someone wash my hair a sink. You also have to think about covering your line when you’re out and about. Those issues aside, I sometimes forgot I had the PICC line in at all. I used it for almost a year, and can say for sure that it made a positive difference in my recovery.

It’s important to know the risks associated with intravenous antibiotics, including the fact that some medications can cause gallstones (this happened to me). So be sure to talk through all the pros and cons with your LLMD, follow instructions carefully, and have a nurse come once a week. Having a PICC line can be very helpful but all safety protocols must be observed.

Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Do you have a question for Jennifer? Email her at  [email protected]