This week, mom and journalist, Apoorva Mandavilli, published an article in the New York Times, titled, "My Son Got Lyme Disease. He's Totally Fine: Horror stories about lingering Lyme disease proliferate, but the illness is easily treated." In the article, Mandavilli described the experience of getting her son, Akash, diagnosed with Lyme disease and the successful outcome of his receiving a four-week course of doxycycline, Mandavilli quoted Dr. Eugne Shapiro, professor of pediatrics and epidemiology at Yale, "when it turns out to be Lyme disease, we go to the parents and say, 'Great news, it's Lyme disease, that is the best thing it could be.' 'It's baloney that you can't cure Lyme disease, it's eminently curable.' "
To Mrs. Mandavilli, I would like to say thank the Lord that your son, Akash, recovered so quickly. I am sincerely glad that he is doing fine without any ill effects. That aside, I find this article concerning and very misleading as it perpetuates the idea that people who contract Lyme disease, especially those who have had it years without a proper diagnosis, are delusional. I have researched chronic Lyme for 8 years and have spoken to hundreds of patients as well as parents and family members of patients who have battled Lyme at various levels using a myriad of protocols including long-term antibiotics for up to a year or more, herbal therapies, various detox protocols, energy therapies, and diet modifications. Some have been successful though often have taken at least a year to address the disease. Some consider themselves to be in remission yet experience lingering symptoms and conditions activated by a weakened immune system. Others are still fighting hard in the battle of a disease that does not care what your income, social status, or walk of life is. No two people who have experienced Lyme disease are exactly the same in how the disease manifests, how the patient experiences symptoms, or how the patient responds to medications, therapies, or treatments.
I happen to live in a region that is a hot spot for Lyme disease. In my family alone, my mother-in-law, sister-in-law, and five nephews have all been infected at some point over the past 18 years. A couple were so severely sick, they were hospitalized. Most of them recovered fairly quickly, though some still have joint pain and a weakened immune system many years later. I myself had a serious battle over a 7 year period (though the first 2 years, I didn't realize what was causing my debilitating symptoms), and I still have mobility impairments and digestive problems from damage caused by the disease. My two oldest children are also experiencing lingering effects from Lyme disease. I try not to overreact when people share their own concerns with tick bites and possible infections, and I certainly do not want to scare people with my own "horror stories"-- in fact, in social situations and at doctor appointments, I tend to hold back to protect myself and my children from any negative association or stigma that might incur with having chronic Lyme. There are many factors involved with this complicated and mystifying illness including genetic factors and exposure to multiple co-infections that have different effects on the body. I find it disheartening that people would lump everyone in a box stating that either you are "fine" because you completely recovered after a month of antibiotics or a "chronic nut case" if you are still struggling after the standard CDC treatment for Lyme.
When you say your son is "fine" and that Lyme disease is "an easily treated infection with no long-term consequences for children, or even the vast majority of adults", tell that to my husband and children who were my caregivers for more than five years. Tell that to my once active and cheerful 14-year-old son who was in so much pain after his 3rd baseball game in a row this week, that his dad had to carry him from our vehicle to the house because his body ached all over and it hurt to bear weight on his legs. Tell that to my 19-year-old daughter who often wakes up in the morning with heart palpitations and gets winded after climbing a flight of stairs because her immune system is still in a weakened state. Tell that to Misty, whose very social, talented, and popular daughter was suddenly housebound with pain and distress, and she was forced to put her music career on hold. Tell that to teenage sisters, Paige and Samantha, who daily fight for their lives, battling seizures and severe episodes to herxing from Lyme. Tell that to all the parents out there with limited support systems who are fighting to be a voice for their children and navigating the world of Lyme on their own to find a treatment or protocol that brings healing to their once thriving children.
My message to the parents of chronically ill children, is that it is "OK" to "not be OK." Don't let ignorant comments of practitioners and other people who are fortunate enough to avoid the devastating effects of chronic Lyme bring you down. My heart aches for your burdened hearts and all the times you have had to face the inaccurate judgement of those uninformed. Don't worry about what other people think and put your focus on your child's well-being. Continue being an advocate for your son or daughter and trust that God's plans for your child goes beyond their condition. Remember that you are not alone. There are many of us parents out there ready to rally behind each other. I will do whatever I can to speak up for your child and be a voice of awareness and hope on his or her behalf. Together, we will conquer the myths and the judgmental forces. Together, we will raise awareness and share our stories. Together, we will not stop until we find answers and give our children the best we can. Together, we will fight and achieve victory!
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JOYFUL TREASURES: Prayers and Pets
"Be joyful in hope, patient in affliction, faithful in prayer." --Romans 12:12
There is nothing more disheartening than seeing your own child suffer. The other night, my husband was carrying our teenage son from the vehicle to bed, and he was in obvious pain and distress. I felt very helpless in that moment, so I dropped on my knees and began to pray earnestly for wisdom and comfort for my son. Then, after I put together his pain protocol, I quietly tiptoed downstairs to find our dog comforting him. My heart ached yet swelled with gratefulness in seeing my son at peace with his furry companion. When we don't know where to turn as parents, let us come to our knees and petition on behalf of our precious children and let God intervene on their behalf. Comfort may come in unexpected places.
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Here is my commentary on this article and more about my son's experience with chronic illness.
**This article is based solely on personal experience and discussions/interviews with other Lyme patients. It is not intended to be professional or expert advice.
For more information about children with Lyme disease, you can view the following links:
https://www.lymedisease.org/mandavilli-response/?fbclid=IwAR1fWkmP4DXckjSNmYgbOAwzYW5SFRMe_H2jFs1tbe9Ckl1ZiYwpz2PCNPI
https://thislymelife.blogspot.com/2019/06/my-son-got-lyme-disease-hes-absolutely.html?fbclid=IwAR2Fkq-vXEUd79SQhs0E1kJnxI76J8PdkZ8FdY1oxj2YcTo1TiP-3G1R0dM
https://dzehm.blogspot.com/2014/12/the-voices-of-lyme-voice-of-youth.html?fbclid=IwAR2py9kZQUvbh2tNhfoU2CV94BNoz4xmccggRLp_vubv2eNChFtcED4Wk6c
https://www.youtube.com/watch?v=HOttbjEylhA&feature=youtu.be&fbclid=IwAR1qP8o0ryO3r6DImecqu1xUwRPKTcZUngV6um44JL8pUbqP50YvU3hsYoo
https://www.facebook.com/donate/342485636461153/
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