Tired of in­dif­fer­ence

LYME DIS­EASE WENT UN­DI­AG­NOSED FOR YEARS

Kalamunda Reporter - - Front Page - Sarah Brookes

OVER­WHELM­ING, de­bil­i­tat­ing fa­tigue left Re­becca Vary so tired each day that she slept in her car dur­ing her lunch break just to gather enough en­ergy to get through her af­ter­noon work­load.

With no di­ag­no­sis from doc­tors, her symp­toms were so bad she pre­pared her will and prayed that what­ever ailed her would take her soon.

It was not un­til 25 years later, in 2013, that Ms Vary said she was fi­nally di­ag­nosed with Lyme dis­ease, an in­fec­tious dis­ease caused by a tick bite.

Its symp­toms in­clude se­vere ex­haus­tion, nau­sea, chronic mus­cle pain, de­pres­sion, anx­i­ety, dizzi­ness, seizures, rash and an in­abil­ity to stand.

Ms Vary said she be­lieved she was in­fected in 1988 at the age of 17 while liv­ing in Carmel.

She said it was dif­fi­cult for peo­ple to un­der­stand the level of fa­tigue ex­pe­ri­enced by suf­fer­ers.

“Imag­ine you slept a solid 12hour night but when your alarm goes off you can’t wake up,” she said.

“You fi­nally get up on the fourth alarm and you man­age a three-minute shower be­cause you can’t stand for too long.

“Then you sit on the bed, soak­ing wet be­cause you don’t have the en­ergy to dry your­self. You’re too tired to move be­cause you have used all your en­ergy just hav­ing a shower, so you stop hav­ing a shower.

“You give up ev­ery­thing that you don’t have to do – your hair, show­er­ing, eat­ing, shop­ping or so­cial­is­ing but you have to work and you have to sleep.

“I en­vied the min­ers in the Chilean mine dis­as­ter that were stuck un­der­ground be­cause I thought that would be the best ex­cuse avail­able to me to be able to sleep non-stop for nine weeks and not have to ex­plain my­self to any­one.”

Ms Vary said the fail­ure of the Aus­tralian Med­i­cal As­so­ci­a­tion to recog­nise Lyme dis­ease in Aus­tralia led to her be­ing mis­di­ag­nosed with chronic fa­tigue syn­drome, de­pres­sion, lu­pus and fi­bromyal­gia.

“Be­cause of my age and sex I was dis­missed by many prac­ti­tion­ers as hav­ing symp­toms that were all in my head or that I was be­ing a drama queen or a spoilt brat,” she said.

“Pa­tients like my­self are so of­ten de­nied in­ves­ti­ga­tions into the many po­ten­tial causes of our symp­toms by the swift pen move­ments of a script be­ing writ­ten for an­tide­pres­sants.

“I un­der­stand that medicine doesn’t have all the an­swers.

“But I wasn’t suf­fer­ing from some­thing that wasn’t known to med­i­cal sci­ence or for which they did not have a cure or even any­thing that was par­tic­u­larly rare.

“I suf­fered from a col­lec­tion of in­fec­tions and ill­nesses that were de­tectable and treat­able.

“It’s this at­ti­tude that al­lowed me to con­tinue to be sick year af­ter year, decade af­ter decade.”

Ms Vary said in Au­gust 2013 an Aus­tralian GP fi­nally di­ag­nosed her with Lyme dis­ease.

“I trav­elled to Ger­many for treat­ment, which in­cluded IV an­tibi­otics and hy­per­ther­mia, and im­me­di­ately my life changed,” she said.

“The lift in symp­toms in just two weeks was be­yond amazing.

“Ozone treat­ment in In­done­sia was the first glim­mer of hope that I might be able to re­cover from my in­fec­tions.”

Ms Vary en­tered re­mis­sion in 2015, 27 years af­ter be­ing in­fected.

She said Aus­tralian doc­tors needed to be trained in acute tick borne in­fec­tions.

“Lyme dis­ease should be part of a dif­fer­en­tial di­ag­no­sis in pa­tients pre­sent­ing with chronic fa­tigue and other un­ex­plained ill­nesses,” she said.

“As a vol­un­teer with the Lyme Dis­ease As­so­ci­a­tion of Aus­tralia (LDAA) I am con­tacted daily by pa­tients that need help.”

“They are go­ing to doc­tor’s clin­ics with bullseye rashes and fa­tigue af­ter a known tick bite and are told Aus­tralian ticks don’t carry dis­ease.

“I reg­u­larly visit sick or sui­ci­dal pa­tients and leave shak­ing my head that this could hap­pen here.”

Ms Vary wel­comed news that the LDAA was fund­ing a new pa­tient-fo­cused pilot re­search study in Aus­tralia.

The project aims to test clin­i­cal sam­ples from pa­tients us­ing an in­no­va­tive method to di­ag­nose vec­tor borne in­fec­tions in­clud­ing those from tick bites.

“In a coun­try where 100 per cent of our live­stock is not na­tive, tiny bac­te­ria could eas­ily have been im­ported. To sug­gest oth­er­wise is lu­di­crous,” Ms Vary said.

The AMA does not recog­nise Lyme dis­ease in Aus­tralia; how­ever, it has con­ceded that pa­tients can present with sus­pected tick-borne ill­ness.

It rec­om­mends gen­eral prac­ti­tion­ers fo­cus on in­di­vid­ual pa­tient symp­toms rather than a la­bel such as Lyme dis­ease. It did not re­spond to re­quests for com­ment.

Pic­ture: David Baylis www.com­mu­ni­typix.com.au d481315

Re­becca Vary’s Lyme Dis­ease went un­di­ag­nosed for 25 years, caus­ing her years of de­bil­i­tat­ing fa­tigue and weak­ness.

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