Lyme dis­ease spread by ticks can be hard to di­ag­nose, treat

Maryland Independent - - News - By JESSE YEATMAN jyeat­man@somd­news.com Twit­ter: @JesseEn­tNews

Life changed one day last fall for the Hark­ness fam­ily.

That’s when they think that 13-year-old Ge­orgina Hark­ness con­tracted Lyme dis­ease.

“We had no idea,” she said. “I woke up one morn­ing at a sleep­over and just couldn’t get up.” She went to school af­ter the week­end sleep­over, but con­tin­ued to feel hor­ri­ble, she said.

That was last Oc­to­ber. “It never went away,” the girl from Hol­ly­wood said.

“The best way to de­scribe it is like hav­ing the flu ev­ery day,” her mother, Cali Hark­ness, said. The symp­toms in­clude “de­bil­i­tat­ing fa­tigue,” so much so that her daugh­ter can’t make it through more than half a day at school, Cali said.

The sev­enth-grader at Leonard­town Mid­dle School said since get­ting sick last fall, she can sleep for one hour or for an en­tire day and still not feel any bet­ter.

“I can barely fo­cus,” the girl said. She re­ceives some home teach­ing through the public school sys­tem be­cause she ends up miss­ing mul­ti­ple days of school ev­ery week. She and her mother hope that the symp­toms will im­prove soon, and Ge­orgina doesn’t have to miss out on more of her formative school days.

She des­per­ately hopes that her days of tap danc­ing, swim­ming and cheer­lead­ing aren’t over.

Often peo­ple, in­clud­ing some ed­u­ca­tors at her school, will doubt the that look said.

Lyme dis­ease is caused by the bac­terium Bor­re­lia burgdor­feri and is trans­mit­ted to hu­mans through the bite of in­fected black-legged ticks, also known as deer ticks.

Typ­i­cal symp­toms in­clude fever, headache, fa­tigue and a char­ac­ter­is­tic skin rash called ery­thema mi­grans, ac­cord­ing to the Cen­ters for Dis­ease Con­trol and Pre­ven­tion. The tell­tale “bull’s-eye rash” does not al­ways show up af­ter con­tract­ing Lyme dis­ease. If left un­treated, in­fec­tion can spread to joints, the heart and the ner­vous sys­tem.

The Hark­ness fam­ily be­gan see­ing doc­tors and spe­cial­ists, but could get no firm di­ag­no­sis.

This is com­mon, Dr. Paul Beals of Steven­sonville said. Beals, who was board cer­ti­fied in fam­ily prac­tice, said he now spe­cial­izes in L yme dis­ease, and uses both tra­di­tional and holis­tic medicine to treat the dis­ease.

“I got into it be­cause there’s such a need,” Beals said. “It’s epi­demic.” di­ag­no­sis and say Ge­orgina “doesn’t sick,” her mother “It is so frus­trat­ing.”

He said that rou­tine lab tests will miss a Lyme dis­ease di­ag­no­sis 70 to 80 per­cent of the time.

“There’s no one-siz­e­fits-all for lyme treat­ment,” Cali said. Ge­orgina is on a reg­i­men of an­tibi­otics as well as vi­ta­mins, an­timi­cro­bials and pro­bi­otics. She is also on an “ul­tra diet,” eat­ing healthy with­out sugar, gluten or dairy.

In a small per­cent­age of cases, symp­toms last more than six months, ac­cord­ing to the CDC. Al­though some­times called “chronic Lyme dis­ease,” this con­di­tion is prop­erly known as “Post-treat­ment Lyme Dis­ease Syn­drome,” ac­cord­ing to the CDC, which main­tains that peo­ple “al­most al­ways get bet­ter with time,” and does warn against long-term an­tibi­otic treat­ment.

Beals and oth­ers dif fer with the CDC in their opin­ions of chronic Lyme dis­ease. The doc­tor ac­knowl­edges the con­tention sur­round­ing chronic Lyme dis­ease, but says that much of mod­ern medicine’s take on the is­sue is se­ri­ously out­dated.

He points to the film “Un­der Our Skin,” an Academy Award semi­fi­nal­ist for best doc­u­men­tary that ex­plores the Lyme med­i­cal con­tro­versy.

Su­san Sup­plee of Leonard­town has hosted in­for­ma­tion ses­sions about Lyme dis­ease at lo­cal li­braries, where she’s also screened the film.

Sup­plee’s own fight with Lyme is one of ups and downs. She thinks she con­tracted it about 20 years ago when she was 19. Through her 20s, she said she would have mus­cle fa­tigue and other health is­sues, but never thought it could be Lyme dis­ease un­til she was al­most 30 years old and was bit­ten by a tick.

“I just fig­ured chronic fa­tigue was part of my life at the time,” as she was rais­ing a fam­ily, work­ing and teach­ing col­lege cour­ses in the evenings, Sup­plee said.

She even­tu­ally tested pos­i­tive for Lyme, and later learned she had un­know­ingly passed it on to her two sons through birth.

She re­mem­bers hav­ing “brain fog” while shop­ping for gro­ceries, a chore that would end up tak­ing three hours as she zoned out, star­ing at shelves. Since then, she’s tried a va­ri­ety of treat­ments, even trav­el­ing to Europe twice to see an im­mu­nol­o­gist.

She’s been on un­told reg­i­mens of an­tibi­otics, both oral and in­tra­venous, and also fo­cuses on nu­tri­tional and holis­tic treat­ments.

“I’ve ac­tu­ally run the gamut of treat­ments,” Sup­plee said.

Un­for­tu­nately, about 1½ years ago she be­came worse be­cause of babesia, a co-in­fec­tion of Lyme. Still, though, she is hold­ing on to hope that one day she’ll be rid of the dis­ease.

Lor­raine John­son is the CEO of the non­profit LymeDisease.org, which aims to ed­u­cate peo­ple about Lyme and how to pro­tect one­self from the dis­ease.

She said the ticks that trans­mit the dis­ease are tiny, and of­ten­times peo­ple do not even re­al­ize they have been bit by a tick. She rec­om­mends us­ing cloth­ing treated with an in­sect re­pel­lent. Peo­ple should check their bod­ies af­ter be­ing out­doors, es­pe­cially in the woods.

“And, the thing peo­ple al­ways for­get — check your pets,” John­son added.

She said that school field trips can be a par­tic­u­lar con­cern. Par­ents should thor­oughly check their chil­dren af­ter out­door field trips.

Lo­cally, par­ents often talk about the mul­ti­ple ticks their chil­dren find on them­selves af­ter vis­its to the Elms En­vi­ron­men­tal Cen­ter. Pro­gram staff mem­bers there do warn against ticks.

And if some­one does have a tick, it should be pulled off im­me­di­ately.

“The longer they’re on, the greater the risk” of con­tract­ing Lyme dis­ease, she said.

John­son said some cases are treated rel­a­tively easy, while oth­ers are stuck with de­bil­i­tat­ing symp­toms for months or longer.

“On our web­site, we have a symp­tom checker,” John­son said.

She agreed with Beals, call­ing most mod­ern tests for Lyme “lousy” and out­dated.

“Peo­ple need to lis­ten to their bod­ies and fol­low up,” John­son, who con­tracted Lyme dis­ease about 20 years ago, said. She’s OK now, but be­cause of a late di­ag­no­sis she had a hard time with the dis­ease.

“When you get bit­ten, you get what they say is a ‘stew of pathogens,’” she said. Ticks can carry a host of other dis­eases.

The CDC has es­ti­mated about 300,000 cases of Lyme dis­ease are di­ag­nosed each year. Only about 30,000 of those ac­tu­ally get re­ported, how­ever. Many more likely go un­di­ag­nosed since Lyme symp­toms can mimic other ail­ments and even dis­ap­pear al­to­gether for a time.

In 2015, 95 per­cent of con­firmed Lyme dis­ease cases were re­ported from 14 states, in­clud­ing Mary­land, ac­cord­ing to the CDC. Lyme dis­ease is now the most com­mon tick­borne ill­ness, ac­cord­ing to the CDC.

For more in­for­ma­tion, go to www.lymedisease. org or www.cdc.gov/lyme.

STAFF PHOTO BY JESSE YEATMAN

Cali Hark­ness, left, of Hol­ly­wood has delved into re­search of Lyme dis­ease since last fall when her daugh­ter, Ge­orgina Hark­ness, 13, con­tracted the tick-borne ill­ness.

IM­AGE FROM THE CDC

The black­legged tick, also known as the deer tick, is small even com­pared to a dime.

IM­AGE FROM TICKENCOUNTER RE­SOURCE CEN­TER

The black­legged tick, also known as the deer tick, can trans­mit Lyme dis­ease as well as other tick­borne dis­eases.

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