“I am not alone in this hellish journey”
Guest blogger Sofia Webster paints a portrait of one day in a Lyme disease support group.
(Note from Dorothy: Sofia is a member of the Sacramento Lyme disease support group. In this post, she has changed people’s names–except mine!– to protect privacy.)
Every summer, when I’m home in Sacramento from my college in Oregon, I eagerly look forward to the second Sunday of each month. It’s Lyme disease support group day and I’m excited. I rush my mom out the door of our house, getting impatient as she tries to finish wolfing down her vegan tamale.
Half an hour later, we arrive at the hospital on J Street. We park our car, cross the street and go inside the building. There’s a conference room with six tables pushed together, with chairs surrounding them.
At 1:00 p.m., Dorothy Leland introduces herself as group facilitator. She explains that we’ll go around the room and let each person say what they’d like. We start with newcomers.
Ted and his wife Sarah inform us about his experience traveling to Mexico for stem cell injection treatment. He says it’s been helping his Lyme symptoms. People have lots of questions.
Jack tells us about a really good probiotic he uses from China. He also updates us on the miraculous bureaucratic loophole that allowed him to get an IGeneX test paid for through Kaiser.
Soft-spoken Bryan just tells us that he’s angry. Angry and confused. He doesn’t know where to direct his anger. Dorothy calmly says, “The IDSA. Infectious Disease Society of America. You can be angry at them.” Everybody chuckles in agreement. Jen, who is sitting next to him, suggests Bartonella may have something to do with his mood.
I’m next. I explain that my 6-week trial of IV clindamycin is really helping me turn the corner and I’m having fewer bad days. The group is happy for me. A year ago, I could barely walk and almost dropped out of college.
Jen tells us about her upcoming vacation to visit family. Her carry-on bag is 73 pounds. 73 pounds is how much two weeks of Lyme disease treatment weighs for Jen. We wish her a good trip.
David brought his mother today. She doesn’t speak, she is just there for support. He talks about what he has learned about adrenals and cortisol via Dr. Horowitz’s new book.
Walter keeps getting terribly ill from whatever antibiotics and herbals he tries. Everybody chimes in that it’s probably a build-up of spirochete die-off and he should think about detoxification. People suggest different detoxing ideas.
Hannah shares her special Epsom salt bath recipe: 2 cups Epsom salts, 1 cup baking soda, and 1/3 cup hydrogen peroxide. She warns that you need to start off slowly and gradually work your way up to more time in the bath. It’s a good form of detox.
Dolly is overwhelmed by all the things she has to do, especially checking her mail. Dorothy suggests making small goals for herself each day. “I am going to go through 5 pieces of mail today.”
Mary is very worried about her daughter, who is seriously depressed and just got diagnosed with Lyme. Dorothy mentions a Lyme-literate psychiatrist who comes occasionally to the Bay Area to see patients. I ask Mary to tell her daughter good luck. I know how hard it can be to be young and have Lyme.
We end back at Dorothy, who gives us some Lyme community news. ILADS has updated their treatment guidelines, and she says they are worth reading. She observes that people spoke a lot about detoxing at this meeting, and she says she’ll email us all a list of different detox methods.
My mom and I linger for some time after to chat with Dorothy and Mary about what it’s like being young and having Lyme.
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Even though I heard about pain, hardship, and frustration during these two hours, for a moment—a wonderful, warm, fleeting moment—everything is okay. I am not alone in this hellish journey. I have community. And it’s beautiful.
Lyme community is incredibly important. Not only did I learn about eight new things, but I connected with my friends and heard how they’re doing in treatment. Lyme is often one of the hardest struggles patients will encounter in their lives. Seeing people get better is encouraging and lifts me up.
For more information about the Sacramento Lyme support group, send an email to saclyme@gmail.com .
Click here for information on how to start a Lyme support group.
Sofia Webster, a senior at the University of Oregon, has been in treatment for chronic Lyme disease since 2012. She has used her experience with oppression as a Lyme patient to fuel her passion for making social change, especially for people with disabilities.
TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s VP for Education and Outreach. She also facilitates the Sacramento Lyme disease support group. Contact her at dleland@lymedisease.org. On Twitter, she’s @dorothyleland.
Sophia,
Thank you so much for your blog. My top priory is to find a Lyme support group around the Seattle area. My son, a senior in college, was recently diagnosed with Lyme disease. It took over a year to figure out what was going on. We visited every kind of doctor (neurologist, heart doctor, lung doctor, ENT). After many X-rays, CT scans and MRI…last week, we finally met with an Infectious Disease doctor, who diagnosed my son with Lyme disease. I feel horrible, as my son would often complain that he was so fatigued he couldn’t get out of bed. His lower back and legs hurt, he had absolutely no energy. He was napping daily (in between classes) sometimes not able to walk across campus, winded after walking a short distance. He said he felt like an old man. We were all relieved with a diagnosis because we felt that “someone found something” and “it wasn’t all in his head.” He was prescribed Doxycycline twice a day for 30 days. I drove him back to campus and he was feeling mentally thrilled this magic medicine will make him well. Today, 5 days after taking meds, he woke up with fever, chills, achy bones, nauseated…utterly sick. Apparently, he is having a Herx reaction. I guess this is part of the recovery process?
Heidi: There is a Facebook group called “Seattle/Washington state Lyme support group.” https://www.facebook.com/groups/1404264989826493/ Recommend you try contacting them.
–Editor