Lyme - the dis­ease that isn’t

Monthly Chronicle - - Health & Well-Being - Jenny Bar­lass

It’s the med­i­cal con­spir­acy of our times - a dis­ease that the Aus­tralian Gov­ern­ment re­fuses to rec­og­nize, nor sanc­tion treat­ment on the pub­lic sys­tem. Doc­tors treat­ing pa­tients with Lyme Dis­ease can ex­pose them­selves to de-reg­is­tra­tion, it’s that se­ri­ous.

Yet this dis­ease which starts with a tick bite, is so dev­as­tat­ing that suf­fer­ers have taken their own lives. They’ve spent months if not years in bed. It has robbed chil­dren of pre­cious grow­ing up years and forced adult suf­fer­ers to spend their life sav­ings or re­mort­gage their homes to head over­seas in the hope of get­ting the cure Aus­tralia re­fuses to pro­vide.

The symp­toms in­clude chronic fa­tigue, ex­treme pain es­pe­cially in joints, and brain fog. When worse, pa­tients re­port neu­ro­log­i­cal symp­toms like sight loss, paral­y­sis and car­diac is­sues.

Cur­rent world’s best prac­tice in treat­ment op­tions in­cludes IV or oral an­tibi­otics given early; some do well with her­bal an­timi­cro­bials. An­other in­no­va­tive treat­ment in the news just now (see box) is heat­ing the body to 42 de­grees Cel­sius to kill the bac­te­ria, or hy­per­baric chambers where low­ered air pres­sures boosts the im­mune sys­tem. All are de­nied pay­ment on the pub­lic health sys­tem.

“One day the Gov­ern­ment will come to its senses,” say Marie Hut­t­ley-Jack­son, Pres­i­dent of the Lyme Dis­ease As­so­ci­a­tion of Aus­tralia (LDAA). Her five year-old daugh­ter got a tick bite while vis­it­ing her grand­mother on the North­ern Beaches. She’s only just com­ing through it six years later.

Re­fused treat­ment by her GP, Marie found cold laser helped rid her daugh­ter of the tick-born bac­te­ria. “I would take her into the ap­point­ment in a wheel­chair clutch­ing a sick bag,” says Marie. “She would walk out of their after­wards feel­ing fan­tas­tic. It was mirac­u­lous. To­day aged 11 she is symp­tom-free.”

The Gov­ern­ment only recog­nises and pays for treat­ment of Lyme Dis­ease when it’s ac­quired over­seas. “They’re deny­ing that a cer­tain strain of Borel­lia, the bac­te­ria that causes Lyme, even ex­ists in this coun­try. They say there’s just not enough ev­i­dence. A Se­nate en­quiry re­ported in late 2017 that un­til they see a par­tic­u­lar strain of Borel­lia here, they won’t ac­cept Lyme ex­ists on our shoes.”

Yet every year hun­dreds of cases are re­ported to the LDAA and the Aus­tralian Chronic In­fec­tious and In­flam­ma­tory Dis­eases So­ci­ety whose doc­tors have treated over 4,000 cases to date. Mean­while in the US, there are 300,000 new cases of Lyme a year, cost­ing the US econ­omy $3 bil­lion.

“It’s not a no­ti­fi­able dis­ease here so there’s no­body of­fi­cially re­port­ing the num­bers,” say Marie.“If we knew how many it would help us ad­vo­cate for re­search. We’ve been ask­ing for years to have Lyme reg­is­tered as a no­ti­fi­able dis­ease but we’ve been knocked back.

“The Aus­tralian pa­tient co­hort and suc­cess of the treat­ing doc­tors (there are a few who risk dereg­is­tra­tion to treat suf­fer­ers) should be suf­fi­cient for the Gov­ern­ment to be proac­tive in prevent­ing the dis­ease through early in­ter­ven­tion and aware­ness.The pa­tients are the ev­i­dence they need. The Gov­ern­ment’s just not lis­ten­ing to pa­tient groups nor treat­ing doc­tors.

“There’s plenty of ev­i­dence that peo­ple who are sick from tick borne ill­ness, re­cover af­ter world’s best prac­tice treat­ment. The gov­ern­ment could have funded ur­gent re­search long ago which might have helped to stem this bur­geon­ing epi­demic.”

The only glim­mer of hope is the Fed­eral Health Min­is­ter Greg Hunt re­cently an­nounc­ing a fo­rum at which all in­ter­ested par­ties can de­cide what ac­tion needs to be taken.

Newspapers in English

Newspapers from Australia

© PressReader. All rights reserved.