Support group question: “Does anyone ever get better?”
A mother gave a heartfelt plea on behalf of her 26-year-old son who has suffered from chronic Lyme for a decade. He has tried numerous treatments from three different LLMDs, she said, and is still too sick to work or go to school.
“I feel like there’s no end in sight to this,” she lamented in a recent posting to LymeDisease.org’s online support group.
“Does anyone ever get better, or am I destined to spend my retirement money on something that cannot be cured?”
Reading her anguished cry for help broke my heart. But I was encouraged to see that over the next few days, more than 30 people had rallied around her. Some shared their personal treatment approaches. Others suggested books and websites. All offered encouragement: Don’t give up hope. Learn as much as you can from others in the same situation. Be open to new possibilities.
One person’s response
The question of whether people who have been sick a long time can ever recover comes up often in support groups. That’s why I’m always on the lookout for success stories.
In this case, I was particularly struck by the response from Harriet Bishop, who gave me permission to quote her by name. Harriet recounted that she’d been a healthy active person until 1989, when she found six tiny seed ticks on her ankle after a hike in the forest. Then, her life changed dramatically.
I was soon reduced to huddling at home, unable to walk from bed to sofa without help. My arms dangled uselessly, and I could not hold a bowl or spoon. My dear husband fed me.
My hands had open gashes that bled constantly so he took over all household duties. He even dressed me as I couldn’t pull a zipper! Could not play piano nor sew nor stand up long enough to cook nor wash a dish.
From 1989 to 2005, I sought help from 40 doctors and received more diagnoses than that. Because all parts of my body were affected, not one doctor put it all together for the complete picture.
It was a complicated puzzle. Tendinitis occurred in many areas, not just one. Many docs suggested it was “all in my head,” especially the bleeding fingers and suggested that I was hurting myself!
…Finally, my daughter in Houston saw a TV clip about a doctor who had patients with similar lesions, and she called it “Morgellons disease.” I found her office was only 50 minutes away from our home, an easy trip. Extensive testing proved I had not only Lyme disease but co-infections of Babesia, Bartonella, ehrlichiosis, anaplasmosis and Morgellons.
Getting her life back
It was a long process, but in time, Harriet said, she regained her health. She went on to serve many years as president of the Texas Lyme Disease Association, advocating for neglected, misunderstood, and misdiagnosed patients.
Her message to this mother ended with the following:
So, Lyme patients CAN get better! Don’t give up! What might help you the most is a frank talk with your LLMD about his goals and how his treatment plan is evolving.
Information will help you understand the course of the various diseases and will help the doctor too, as cooperation between the three of you will surely lead to success. I hope you will have that talk, hang in there, and steer your son to a healthy life ahead of him! Let us know how it all goes down, ok? We are rooting for you!
I continue to be amazed by the high quality of responses I see from this support group. Eighteen years ago, when my daughter’s health was tanking and we were getting no help from mainstream medicine, participating in a group like this helped lead me to the right path for my family. It helped me find an LLMD, educated me about different treatment options, and perhaps most importantly, made me realize that my family was not alone.
When you’re suffering and don’t know what to do next, there’s real power in hearing this message from others: We hear you. We’re in the same boat. We’ll get through this together.
You can join this group right now
If you feel you would benefit from participating in this group, I encourage you to sign up for it now. There is no charge. You may find help for your own situation or may even find yourself helping somebody else.
Either one sounds like a good way to start out 2024.
TOUCHED BY LYME is written by Dorothy Kupcha Leland, President of LymeDisease.org. She is co-author of Finding Resilience: A Teen’s Journey Through Lyme Disease and of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at firstname.lastname@example.org.