Three Powerful Stories
May 2019 Issue
By Michele Roldán-Shaw
Photography by Christian Lee
Pictured Left to Right: Caroline Malloy, Kim Malloy, Kelly Ogdon, Imani Young and Janet Young
Only those who have experienced it will ever know the immense strength it takes to face Lyme disease. Strength to withstand blow after blow from an unseen, unknown stealth pathogen that evades modern diagnostics and moves rapidly through the body attacking any system it chooses. Strength to bear being ignored, dismissed, disrespected, and outright laughed at by those who don’t believe your illness is real, including doctors. Strength to keep trusting your own judgment instead of giving in to outside suggestions that you’re “just depressed.” Strength to carry on with daily activities when all the joy has been sapped out of them by a disease famous for the fact that it doesn’t kill you; it just makes you want to die. Strength to persevere when you’ve been led into collapse by false diagnoses and misguided treatments that only made you worse; to find hope in the latest plan when all the previous ones have failed. Strength to dig deep and pull yourself up over and over, day after day, year-in and year-out with no end date because supposedly there isn’t a cure. Strength to keep believing in yourself when you’ve been on the floor for so long, to keep believing in life, to keep believing in happiness.
Only survivors can understand this.
People like Kelly Ogden.
It was a normal ordinary day in March 2011. Kelly was with her family at the grand reopening of Tanger Outlet in Bluffton when all of a sudden she didn’t feel right. Her heart started racing, she got lightheaded, and stepping outside for a breath of air was no relief. Next thing she knew she was being rushed to the ER.
“It was like somebody just flipped a switch,” said Kelly, who had always been a healthy, active person. “Things went downhill fast.”
At the hospital she was told her blood pressure spiked, which had never happened before, but nobody could say why. The doctor tried to tell her it was menopause—an unfortunately typical response that completely devaluates women’s health concerns—but Ogden quickly shut that down. They sent her to a cardiologist but tests proved inconclusive. Three days later she had another attack. Ogden knew her body; she knew something was wrong. But she never could have anticipated the ordeal that was to follow.
Her face started to go numb. She developed a nervous tick. All the muscles in her body stiffened up so that it became impossible to relax. Other symptoms were so bizarre they couldn’t be named. The fatigue was debilitating, but at night she had insomnia. Severe hypoglycemia forced her to eat every hour, yet all but a few foods sent her into another tachycardia episode like she’d had at Tanger Outlet. Hospital visits became routine. Within a few months she’d dropped from 120 to 90 pounds and was suffering panic attacks to the point where she couldn’t leave home.
“I couldn’t even look people in the eye anymore,” Kelly says. “My husband had to drive me from the house to the doctor. If it wasn’t for him I would have ended up in a loony bin.”
As if she wasn’t going through enough already, the first part of her journey involved the denial and victim-shaming that is all too common with this highly misunderstood disease. Doctors kept saying it was depression or anxiety and trying to give her drugs for that, despite her husband’s insistence that “This woman has never been depressed a day in her life.” Whole panels of tests failed to detect the problem, so doctors persisted in saying the worst thing you can tell a patient: “It’s all in your head.” As strong as Kelly was, as much as she knew deep inside they were wrong, eventually she felt so bad and so hopelessly lost she started to believe them.
Thankfully she was also seeing a holistic doctor on Hilton Head. He listened, he cared, and he worked tirelessly with her to get to the bottom of it. “He was basically chasing something in my body,” Kelly says. “One day it would be in my liver, the next my thyroid, the next my adrenals, and so many other things I don’t remember because it was all just a blur. Lyme moves very quickly and it’s very smart, so if you start to heal an area it moves to another. It’s a parasite that burrows into soft tissue and organs, including the brain, which is why there are so many neurological issues. It’s scary. But I just knew we could get rid of it if we were diligent.”
Eventually Kelly dropped the conventional medical community altogether and entrusted herself to the holistic practitioner, who finally hit on the Lyme diagnosis and prescribed a homeopathic tincture. The first two weeks were hell because die-off produces symptoms almost worse than the disease itself. But after a month she was feeling better, and although it took quite a bit longer to get her weight back up and overcome the last vestiges of anxiety, today she is fully recovered. She went on to open Orange Theory Fitness on Hilton Head, something she never could have imagined while in the throes of Lyme.
Kelly considers hers an extremely lucky case because, from initial onset to correct diagnosis and treatment, only a few months elapsed. But others endure heartbreaking trials for years on end, often without a good support system, or the resources to seek advanced care. Spouses desert, parents accuse children of being anorexic. They can’t afford to see specialists so they take cheap antibiotics that only sink their immune systems lower. How many slip through the cracks? Even in milder cases, symptoms are so insidious and persistent, yet so vague and confusing, that patients themselves begin to question their own sanity. If you thought you were going to feel like you had the flu every day for the rest of your life—not sick enough to stay home from work or school, but not well enough to enjoy or succeed at anything—how would you cope?
Janet Young recalls the morning in 2015 when her 13-year-old daughter Imani was unable to get up. “She just couldn’t do it, and I got the deep sense, the intuition a mother gets when something is truly wrong with her child,” says Janet, owner of Massage by Janet on Hilton Head. “I knew we were in for a long and difficult journey. Lyme almost has to be experienced to be understood, and I wouldn’t wish that on anyone. It is a non-stop cycle of pain, fatigue, and hell.”
It wasn’t until 2016 that Imani received a positive Lyme diagnosis from a doctor in Savannah. But he didn’t know how to proceed, and other physicians were even less helpful in that they discredited Imani and refused to investigate her symptoms. By 2017 Janet and her daughter had landed at a famous Lyme clinic in Connecticut where her specific co-infections were identified. But the antibiotic-based treatment they relied on, and which seemed to help at first, later failed entirely. Like Kelly, they turned to natural medicine, and with the help of naturopathic doctors in Atlanta they finally got Imani on the right path. Janet took advanced trainings in Chinese medicine and other natural healing techniques to support her daughter’s detox and recovery.
“Lyme is a biotoxin,” Janet explains. “It lives in a biofilm that is like a community of viruses, fungus and bacteria. Enzymes were used to break down the biofilm, and homeopathy and herbal remedies were used to take down the imbalances of bacteria and viruses within it.
There were many months where I was up with her all night doing acupressure, cranial sacral work, Reiki, and reflexology to stop a seizure and calm her system. I was lucky to get 45 minutes of sleep those nights, and as a single mother, I still had to work the next day.”
As of this year, now 17, Imani considers herself Lyme-free. She plans to write a book about her experience, and Janet is applying the new skills she learned to help her massage clients on their own healing journeys.
But for another tenacious young lady the battle rages on.
“Things started to get really bizarre in January 2017,” recounts Caroline Molloy, 21-year-old resident of Hilton Head, who had been studying to be a nutritionist and yoga instructor in California before her health collapsed. “Doctors were diagnosing me right and left: fibromyalgia, multiple sclerosis, PTSD, anxiety, Vitamin D deficiency. I spent three days in the epilepsy unit only for them to tell me I didn’t have epilepsy. Most were all too willing to say, ‘You just need some rest, therapy, and an antidepressant and you’ll be fine.’ I’ve had doctors laugh and giggle in my face.”
Meanwhile, Caroline’s symptom list grew to the stuff of nightmares: seizures, migraines, blind spells, extreme vomiting, bloating, food aversions, weight loss, insomnia, confusion, brain fog, fatigue, heart trouble, severe body and neck pain, arm tremors that went on for hours, even temporary paralysis. She started fainting several times a day, resulting in concussions. Despite managing 62 different supplements, she just wasn’t getting well. Forced to quit school, she came home to the support of her parents who, according to Caroline, “dropped their lives to help me fight for mine.” Eventually she had to give up driving, exercising, and basically her entire life as she knew it; she could barely even walk. Although she was visiting top specialists all over the country, treatments turned into ordeals of their own, such as the spinal tap doctors ordered when they thought she had MS, and the PICC-line, used to give intravenous medicine after her veins collapsed from so many shots, that was hooked up to her heart for six months, causing numerous blood clots and finally a staff infection that nearly killed her.
“Nobody understood what I was going through,” says Caroline, a model whose gorgeous looks went undiminished apart from weight loss. “To this day, everywhere I go people tell me, ‘But you look great, you must be fine!’ Or they say, ‘At least you don’t have cancer,’ then they don’t show the care and sympathy you would show a cancer patient. It gets to the point where I don’t want to leave home even if I can because they catch me on the one hour a week that I’m out, then they don’t believe anything’s wrong with me. But what 21-year-old wants this? I hate to be the girl who walks around telling everyone how sick she is, but at some point it’s like they’re over it, they don’t even want to know anymore. Nothing has been more maddening or lonely in the entire world.”
When she first got the diagnosis of stage 4 neurological Lyme disease, Caroline felt a weight lifted off her shoulders. Suddenly her whole life made sense: the headaches, stomach problems and anxiety she’d always struggled with, the low immunity and injuries that never healed. She was able to trace her troubles back to a strange rash manifested at age 7, which traveled around her body and was accompanied by mild fever; the disease went on to incubate in her system for years before launching its full attack. But what little comfort this revelation brought was quickly dashed when she learned there is no cure, that you can’t just take a pill and make it go away. An even bigger burden was placed back on her shoulders.
“People don’t understand the strength it takes,” said Caroline’s mother, Kim Molloy, who has been reduced to tears in doctor’s offices begging them to help her daughter. “It is so exhausting and takes so much energy to be sick. But Caroline is a caring and compassionate person, so going forward she wants to help people understand so others who have the disease won’t feel so alone.”
Unfortunately, at the time of this writing Caroline does not feel better. But she hasn’t lost hope, and by her own assessment she’s no longer in the depths of despair. She celebrates small victories, laughs through the tears, and speaks out in her blog sweetcarolyme.com. A saving grace has been the love of near and dear ones: her brothers who run to her when she has a seizure, her boyfriend and close friends who visit and bring comfort in dark moments, extended family members who started a GoFundMe on Caroline’s behalf to help defray the immense financial burden of a disease not covered by insurance.
“I see so clearly how it would be easy to give up,” said Caroline, whose spiritual faith keeps her from succumbing. “I do plan to be in remission someday, but I’m never going to forget this experience. I feel it’s my duty to try to make a difference for those who come behind me, and to advocate for better testing and insurance. So many people going through this are suffering in silence. They can’t see the light at the end of the tunnel. They don’t want to live anymore, so they don’t. If I can decrease that rate even a tiny bit, that’s what I plan to do.”
Chronic Lyme disease is on the rise with hundreds of thousands of confirmed cases, but confusion and mis-education run rampant. If you ask a dozen different doctors you’ll get a dozen different explanations, including “There is no such thing.” Most patients are still looking for answers. The disease is believed to come from ticks, but the majority never sees the one that bit them. The standard treatment is antibiotics, but this seldom proves effective and sadly makes many cases worse. The only thing we can say for certain right now is, if you are someone out there who is suffering, never give up the quest.
“Lyme is one disease that’s different for every single person,” said Kelly, who came back from the brink to live a happy Lyme-free life. “It affects people in so many different ways and has so many different co-infections, so what worked for me might not work for someone else. But no matter what you have, do not stop looking, because there is something right around the corner that might help you. Don’t take no for an answer, and don’t be afraid to tell doctors ‘You are wrong.’ You have to be your own advocate. Get to the bottom of it and get it out of your body.”
Visit Gofundme.com and search for Caroline Molloy to donate towards her recovery efforts.
If you find a tick attached to your skin, there’s no need to panic—the key is to remove the tick as soon as possible. There are several tick removal devices on the market, but a plain set of fine-tipped tweezers work very well.
How to remove a tick:
• Use fine-tipped tweezers to grasp the tick as close to the skin’s surface as possible.
• Pull upward with steady, even pressure. Don’t twist or jerk the tick; this can cause the mouth-parts to break off and remain in the skin. If this happens, remove the mouth-parts with tweezers. If you are unable to remove the mouth easily with clean tweezers, leave it alone and let the skin heal.
• After removing the tick, thoroughly clean the bite area and your hands with rubbing alcohol or soap and water.
• Never crush a tick with your fingers. Dispose of a live tick by putting it in alcohol, placing it in a sealed bag/container, wrapping it tightly in tape, or flushing it down the toilet.
Follow-up: Some people choose to get the tick tested. Call you doctor to see what is best for you should you encounter a tick bite. If you develop a rash or fever within several weeks of removing a tick, see your doctor. Be sure to tell him/her about your recent tick bite, when the bite occurred, and where you most likely acquired the tick. Perhaps taking a photo of the tick would help the doctor identify the type of tick. Whatever you do, avoid the temptation to crush it with your fingers. This is another way you can get disease from it.