TOUCHED BY LYME: Misdiagnosed Lyme turned into horrific experience
Guest blogger Jennifer Crystal writes about damage caused by “illiteracy of tick-borne illness.”
In the summer of 1997, while working at a camp in Maine after my freshman year of college, I found a blotchy red rash on my right arm. The camp nurse shrugged. “Maybe it’s from your sleeping bag. Let’s give it a few days and see what happens.”
A few days later I collapsed in the dining hall. When I came to, the camp nurse told me I’d had a low blood sugar reaction, something that had never happened to me before. She didn’t think to connect the incident with my mysterious rash, which by then had faded. She didn’t think to test me for Lyme disease, known for its tell-tale rashes. She didn’t think to test me for babesia, ehrlichia or bartonella, tick-borne parasites that consume oxygen in the red blood cells, which can first manifest as hypoglycemia. She didn’t think to do any of these tests, because she didn’t know the serious health threat that ticks pose in wooded areas.
I don’t blame the camp nurse for my misdiagnosis, but I do blame the lack of awareness surrounding tick-borne illness that led to her ignorance. It took eight years for a doctor to connect the dots of my burgeoning constellation of symptoms. By then the bacteria had spread to every system of my body, crossed the blood-brain barrier and invaded my central nervous system, and was replicating at a rate that evaded the strongest antibiotic treatment.
I was left bedridden, hooked up to an IV, for two years. The co-infections of babesia, ehrlichia and bartonella caused nightsweats, fevers, and neurological symptoms that demanded intense anti-malarial treatment.
This is the fate that awaits anyone who does not receive a proper diagnosis of tick-borne illness right away.
Our best defense against this health threat is Lyme literacy, not just amongst the general population but amongst doctors, too.
If you suspect you have a tick-borne illness and you feel that your doctor is not taking you seriously, please, remember my story, and find another doctor. Press on until you receive an accurate diagnosis and proper treatment. Doctors should test not only for Lyme disease but for co-infections that can complicate treatment. Because tests for tick-borne illnesses can be inaccurate, doctors also need to watch for clinical symptoms.
Thirty thousand cases of Lyme disease are reported by the Center for Disease Control each year. But because Lyme is often overlooked or misdiagnosed, the International Lyme and Associated Diseases Society estimates that only 1 out of every 10 cases of tick-borne illness is actually reported, and that the number of cases occurring each year has increased twenty-five-fold since the disease was first tracked in 1982.
If Lyme disease is diagnosed right away, a course of antibiotics may eradicate the disease. The problem is that not all bites come with a classic bull’s-eye rash. Often, bites happen in hard-to-spot places like the scalp or behind the ears. Symptoms of fatigue, joint and muscle pain and neurological impairments can be misdiagnosed as everything from the flu to anxiety.
I am living proof of the damage this gross illiteracy of tick-borne illness can cause. If my story can save one person the trouble of all that I have been through, the pain and suffering will have been worth it.
Jennifer Crystal is a masters of fine arts student at Emerson College in Boston. This article originally appeared on boston.com.
- May 18, 2012 at 6:08 pm
my question is I have a son who is 8. He had rocky mountain spotted fever about 4 years ago. Almost 3 years ago he was diagnosed with epilepsy and autism spectrum disorder. My question is can there be lasting effects from rocky mountain? He was treated with 3 iv bags of rosefin when he got sick. Could this at all be lengthed with the diagnoses he has been given?
- May 18, 2012 at 7:28 pm
Thx for letting us know your story, Jennifer – you’re right when you say it comes down to Lyme literacy. With that in mind, I thought of a prototype simple list of 10 questions for the public, with answers on the back, for a double-sided hand-out/flyer, etc.
A R E Y O U L Y M E – L I T E R A T E ?
Anyone can potentially contract Lyme disease, which is spreading throughout the world. Can you answer these questions?
1) What is Lyme disease?
2) How is it spread?
3) What are early symptoms?
4)What are later developing symptoms?
5) How is it tested?
6) Are tests accurate?
7) How is it treated?
8) Are there other illnesses that can also be contracted along with Lyme disease, and if so, what are some of the main ones?
9) How can we protect ourselves, our pets and environment against getting these illnesses?
10) What are some of the most knowledgeable organizations to contact for support and referrals to Lyme-treating medical professionals?
- May 19, 2012 at 7:48 pm
My story, your story and now a countries story. Lets hope the right person listens.
I wrote for two hours. My problems poured from reading your story. Thats the problem. It has been long enough. Too many lives are being allowed to spoil simply because this disease does not scare politicians. This is wrong. Simply wrong.
Each generation of “Lymies” continue the same story over & over. We need to do something different. I do not know what that something should be but the old saying about stupidity is doing the same thing over and over while expecting different results may apply here. I have been sick since 1985 and my Lyme disease story just revealed to my family in June of 2011 sparked not a call or question. Once a popular and happy go lucky guy not even registering to his own family anymore. Alone & no where to go. Sounds like a cancelled sitcom. Maybe we should make a saint for all the caretakers who help those who are sick and promote the sacrafices of the loved ones. We need a Lyme think tank. This is epidemic and acedemic after all. I’ve been sick too long. We all have.
Good luck to you. What do you believe?
Blessings to you & your family,
- May 24, 2012 at 4:16 am
This sadly tells the story of the many thousands of LYME DISEASE victims across the U.S.A. and the whole world. SHAME ON OUR HEALTH AND HUMAN SERVICES DEPT. AND C.D.C. AND THE STATE HEALTH DEPTS. IN ENDEMIC AREAS SUCH AS MINE-ELK COUNTY IN PENNSYLVANIA FOR PUSHING THIS UNDER THE RUG FOR THE PAST 25 YEARS OR MORE !!! LYME DISEASE NOW SURPASSES ” AIDS AND WEST-NILE VIRUS ” SINCE 2010. WE MUST ALWAYS KEEP ON EDUCATING AND STRESS PREVENTION OF GETTING BIT BY TICKS. EDUCATION FOR DOCTORS, EMERGENCY ROOMS, SCHOOL NURSES, SCOUT LEADERS, OUTDOORS CLUBS, GOLFERS, PARENTS, AND THE GENERAL PUBLIC IS VITAL !! WE ARE ALL AT RISK !! USE DEET FOR YOUR SKIN -10 % for KIDS, 30-40 % FOR ADULTS. use ” PERMETHRIN ” ON YOUR CLOTHES-MADE OUT OF “MUMS “- HARMLESS TO HUMANS-DEADLY TO TICKS. PLACE ALL OF YOUR CLOTHES INTO A CLOTHES DRYER FOR 30-60 MINUTES TO KILL ANY TICKS YOU MAY HAVE CARRIED HOME FROM HUNTING, FISHING.OR JOGGING, ETC. TICKS DO NOT DROWN NOR DO THEY FREEZE !!
- June 16, 2012 at 5:24 am
Staci you are admirable and your work tdaorws researching and bringing awareness about Lyme Disease is fantastic. I wish you can push to find a cure and after so much you have done I hope you can be completely recovered and healthy. To all the team, thank you very much.
- June 30, 2012 at 6:01 pm
I have a friend I just visited she is 76 and was diagnosed with Lyme, she is in agony right now with pain in her whole body, the dr started Doxycycline 2 days ago, she is doubled over crying in pain, can’t eat, can’t poop, she has lost so much weight and I’m afraid she is dying. I tried relentlessly to have her daughter, an RN, to take her to the hospital but she said they will send her home…again…with a misdiagnoses…My heart breaks for her, don’t know what to do??????
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