October 8, 2018

Dear Lyme Warrior … Help!

lyme warrior_lyme Q&A
October 8, 2018

Dear Lyme Warrior … Help!

by Jennifer Crystal

Every few months, Jennifer Crystal devotes a column to answering your questions. Here are her replies to questions she has recently received. Do you have a question for Jennifer? If so, email her.

How do you explain to someone that one day you’re so tired and your body aches, and the next day you’re fine?

This is a question with which patients with chronic illness wrestle, whether they have tick-borne disease or another condition that follows a relapsing pattern. With such illnesses, symptoms ebb and flow, even when you’re under treatment. For example, antibiotics can kill bacteria faster than your body can eliminate them, thus causing a back up of toxins known as a Jarisch-Herxheimer reaction. Simply put, this makes you feel worse before better. Once the toxins are eliminated, you go through a period of feeling better, which can last a couple days or a couple weeks, before the process starts over again. It’s very hard for most people who aren’t Lyme literate to understand this. Their understanding of illness is that it is linear: you get sick, you take medicine, and you slowly start to improve until you’re better.

Such is the case for bronchitis or a sinus infection, but not for tick-borne illnesses. I think healing from Lyme is akin to walking up a spiral staircase. You will go around and around. Sometimes you’ll stop on a landing and be steady for awhile. Then you’ll continue climbing, spiraling through various symptoms. You may even slip backwards, because the staircase is steep. But ultimately, after some delay, you make your way to the top, which is relative wellness. Perhaps you can give the naysayers in your life this image to help them understand what it means to have a relapsing illness.

If they don’t understand, find other people who do. Some people in your life just aren’t going to get it, and you don’t have the energy to argue with them; you need to conserve that energy on your health. This is especially hard when the people who don’t understand are the people you need the most—family or close friends. Some may come around eventually; some may not. Focus on the friends and support group members who do validate how you feel. That’s the medicine you really need!

Is it okay that I’ve had symptoms for two years?

There is no “okay” or “normal” with Lyme and other tick-borne diseases. No two individual (cases are alike. Someone who finds an engorged tick and is treated immediately might only have symptoms for a few weeks. Someone like me who went undiagnosed for eight years might be symptomatic through several years of treatment, with lingering, milder symptoms afterwards. Someone who is never properly diagnosed and treated will have symptoms their whole life.

I can tell you that longer-term cases of Lyme disease—those that fall under Stage 2 or Stage 3 of the disease can take years to treat. Spirochetes are smart. They’ve evolved to spiral away from antibiotics, requiring intense, long-term treatment to treat them. Tick-borne co-infections often complicate and lengthen the treatment period, since each pathogen requires a different kind of treatment. Another variable is the strength of a patient’s immune system and how well he or she responds to medication.

If you are under the care of a Lyme Literate Medical Doctor (LLMD) and your symptoms have persisted but improved even a bit over the last two years, then yes, I’d say that sounds pretty typical. If you are not yet seeing an LLMD, GLA can help you find one. Lyme is a bacterial infection that won’t go away on its own. If you’ve received treatment and are still symptomatic, you may need additional treatment. Only an LLMD can determine what’s best for your specific case.

When you said that it felt like your arms and legs were “jumping,” was it like twitching?  

Yes, that would be an accurate description. I described this feeling as part of air hunger, when my arms and legs would sometimes feel like they were having a panic attack. What I meant by that was that my limbs felt like they were gasping for air, the same way my lungs would. Due to neurological upset caused by spirochetes in my brain, my muscles would also twitch (sometimes, when I am especially tired, they still do). It can be a mild twitching, or it can be more of a focal seizure, where that whole area of my body jerks against the bed. For me, these twitches can be an indication that I need Vitamin A1, but only your LLMD can determine the cause and treatment of yours.


jennifer crystal

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. Contact her at jennifercrystalwriter@gmail.com

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