by Jennifer Crystal
JENNIFER CRYSTAL ADDRESSES THE COMMON MYTH THAT LYME DISEASE ONLY EXISTS IN NEW ENGLAND.
Last summer, a friend who lives in Oklahoma found a classic bullseye rash on her seven-year-old daughter.
“That’s a spider bite,” a local pediatrician told her. “We don’t have Lyme in Oklahoma.”
The doctor was wrong. Had my friend taken his advice, her daughter would not have been diagnosed in a timely fashion and she would likely have developed symptoms over the next few months or years. She probably would have become severely debilitated, and the infections might have crossed the blood-brain barrier and become chronic.
In other words, the little girl could have wound up like me. For as it turns out, she did not have a spider bite. She had Lyme disease and two co-infections, Babesia and Bartonella.
Now she’s a healthy, happy second grader because a Lyme Literate Medical Doctor (LLMD) was brought in who accurately saw the bullseye rash for what it was. Another pediatrician ordered special tests, and started the child on proper medication for all three infections. Because they were caught early, those infections have now cleared up.
This little girl was lucky, but that’s because her mother was informed about Lyme and knew to persist beyond the “spider bite” diagnosis. But what about all those children whose parents and pediatricians aren’t Lyme literate? Especially those who live outside the so-called endemic areas?
I don’t believe the Oklahoma pediatrician meant harm with his inaccurate diagnosis. His lack of awareness stemmed from a common myth that Lyme only exists in New England, and specifically in the woods. I’ve had people in Massachusetts say to me,
“Oh Lyme—that’s the thing you get when you’re hiking, right?”
Yes and no. Ticks live not only in the woods but also in long grasses, gardens, woodpiles, leaf litter and on lawns. They love any moist, shady area. They feed not just on deer—another common myth—but also on mice, chipmunks, shrews, birds, and other small mammals. Therefore, they travel a lot. People travel, too. Someone from South Carolina might take a vacation in Maine, get bitten by a tick, and later be told by their doctor, “It can’t be Lyme. We don’t have it in the South.” In fact, cases of Lyme disease have been documented across the United States, and throughout the world.
New research published in the Journal of Medical Entomology shows that infected ticks are now in half the counties across the country, a number that has almost doubled since a similar survey was done in 1998. The study notes that over the past two decades, the black-legged tick
“has expanded from its northeastern focus northward into upstate New York, Vermont, New Hampshire, and northern Maine; westward across Pennsylvania, eastern Ohio, and New York; and south—and southwestward into West Virginia, Virginia, and North Carolina.” The study also notes a similar geographic expansion in the North-Central states. “The two previously distinct foci in the Northeast and North-Central states appear to be merging in the Ohio River Valley to form a single contiguous focus.”
Ticks are spreading across the country, bringing not just Lyme but co-infections. These require different treatment and can complicate recovery.
Had my friend’s daughter only been treated for Lyme and not for Babesia and Bartonella, she would still be sick.
Some of these co-infections are specific to states that are nowhere near New England. Bourbon virus, a rare but potentially deadly illness, has been reported in Kansas and Oklahoma. The Heartland virus, spread through the bite of an infected Lone Star tick, has been found in Missouri, Tennessee and Oklahoma. Also transmitted by the Lone Star tick is Southern Tick-Associated Rash Illness (STARI), while dog ticks and Rocky Mountain wood ticks carry Rocky Mountain Spotted Fever.
Tick borne illnesses are rampant not just in New England, not just deep in the woods, but all across the country and world. As the International Lyme and Associated Diseases Society states on its website,
“ticks know no borders and respect no boundaries.”
No matter where you live, if you have symptoms of Lyme and/or co-infections, it’s critical to see an LLMD. If you still have the tick, you can also get that tested. Follow the smart lead of my friend in Oklahoma, so you don’t wind up like me.
Opinions expressed by contributors are their own.
Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at firstname.lastname@example.org
 Rebecca J. Eisen, Lars Eisen, Charles B. Beard; County-Scale Distribution of Ixodes scapularisand Ixodes pacificus (Acari: Ixodidae) in the Continental United States , Journal of Medical Entomology, Volume 53, Issue 2, 1 March 2016, Pages 349–386, https://doi.org/10.1093/jme/tjv237
Lyme/MSIDS is everywhere. Do not let anyone tell you otherwise. The entomology maps of tick locations have been used for decades keeping patients undiagnosed and untreated. For a great article on how the Spielman maps have been an iron curtain keeping patients from getting tested: http://steveclarknd.com/wp-content/uploads/2013/11/The-Confounding-Debate-Over-Lyme-Disease-in-the-South-DiscoverMagazine.com_.pdf (scroll to page 6 & 7 for details)
https://madisonarealymesupportgroup.com/2016/09/24/arkansas-kids-denied-lyme-treatment/ (Southern patients are STILL told there is no Lyme in the South.)
https://madisonarealymesupportgroup.com/2017/10/12/the-cdc-needs-a-good-dictionary/ This article is a perfect example of why all things related to Lyme/MSIDS has hardly budged in over 40 years.
As to testing, the current CDC two-tiered testing misses over half of all cases. The “special” tests Ms. Crystal mentions are more sensitive but are not supported by main stream medicine for reasons I won’t delve into here (essentially governmental collusion, patents, power and money – read article about the CDC needing a good dictionary above).
Great testing info here: https://www.lymedisease.org/lyme-basics/lyme-disease/diagnosis/ and here, https://madisonarealymesupportgroup.com/2016/12/07/igenex-presentation/
Lyme literate doctors (LLMD’s) use the more sensitive testing but also diagnose patients clinically as some NEVER test positive. This is important to know. Here is a common checklist you can print out and complete on your own. https://madisonarealymesupportgroup.files.wordpress.com/2016/01/symptomlist.pdf If you have a preponderance of symptoms – think TBI’s (tick borne illness); however, there is a caveat – some people present differently and don’t fit the classic mold. For instance, for some, the only significant symptom is psychiatric:
https://madisonarealymesupportgroup.com/2017/10/24/the-lyme-wars-faces-of-the-health-crisis-a-digital-documentary/Kyra, didn’t have the normally thought of symptoms – just horrible anxiety, depression, and hopelessness. Her doctor knows Lyme is the great imitator and suspected it despite a negative test. She tested positive for Ehrlichia, which implies contact with a tick. Due to the Lyme/MSIDS diagnosis Kyra went from blaming herself to understanding she now had something she could fight. After doxycycline they chose IV Rocephin – and Kyra became herself again. “The feeling of actually starting to recognize pieces of what I was before was such an amazing feeling.”
And don’t ever forget the probable involvement of coinfections which will significant complicate everything: https://madisonarealymesupportgroup.com/2017/05/01/co-infection-of-ticks-the-rule-rather-than-the-exception/