Mum’s mis­sion to find cause of sons’ mys­te­ri­ous ill­ness

Af­ter a long, painful road, Karla Wil­liams and her fam­ily need the gov­ern­ment’s and your help

Life & Style Weekend - - READ - By Alexia Pur­cell

FOR 17 years, Karla Wil­liams has been try­ing to find the cause of her sons’ mys­te­ri­ous ill­ness.

Ever since they were born her three boys, Ernest, 17, Elih, 16 and Khaden, 10, have strug­gled with se­ri­ous health chal­lenges.

The Sun­shine Coast mother said she had seen count­less doc­tors but no one had the an­swer.

“They are classed as hav­ing a ‘rare’ con­di­tion and have been placed in the too hard bas­ket by the med­i­cal so­ci­ety,” Ms Wil­liams said.

She said it all be­gan when Ernest and Elih were ba­bies.

“They be­came ex­tremely un­well, vom­it­ing re­peat­edly and cry­ing per­sis­tently,” she said.

Then when the boys were three and two, she said they started pass­ing blood and sul­phuric acid.

“The pain was ex­treme as the sul­phuric acid that passed through their bowel had stripped the skin off their bot­toms.

“Their bel­lies were hugely dis­tended and the rest of their body was ap­pear­ing to waste away.”

They were so ill all they did was lie on the lounge and sob all day. She said doc­tors di­ag­nosed it as gas­tro but she knew it wasn’t.

This was when Ms Wil­liams started do­ing her own re­search. “Ev­ery GP I took them to said just to ac­cept that this was how they would be. They of­fered me anti-de­pres­sants to deal with ev­ery­thing. I re­fused to numb my­self.”

The boys were so un­well Ms Wil­liams said she and her hus­band were un­able to keep their jobs. Fi­nan­cially stretched, they re­sorted to eat­ing just rice, meat and veg­eta­bles for most meals. It was af­ter this rad­i­cal diet change that she said she made her first discovery.

“Much to my as­ton­ish­ment I no­ticed af­ter chang­ing our diet that the boys were cry­ing less and weren’t in as much pain.”

She re­quested her GP run a few tests, which showed the boys were hav­ing al­ler­gic re­ac­tions to al­most ev­ery­thing they were eat­ing. So she cre­ated a diet for them.

“The diet im­proved their symp­toms enor­mously. They could now ab­sorb nu­tri­ents. Their pain had stopped.”

Then one day, af­ter a decade of re­search, speak­ing to nu­mer­ous doc­tors, spe­cial­ists and health pro­fes­sion­als and go­ing to con­fer­ences, came a break­through.

“One night I was sit­ting at home on the com­puter and had said to my hus­band this has to have some­thing to do with their detox­i­fi­ca­tion path­way not work­ing.

“It’s like they are de­fi­cient in glu­tathione or some­thing sim­i­lar and the toxic waste that nor­mally is elim­i­nated re­mains in their bod­ies and ac­cu­mu­lates to dan­ger­ous lev­els caus­ing them to have th­ese life-threat­en­ing episodes.

“Then I re­ceived a phone call from the boys’ pe­di­a­tri­cian telling me that the spe­cial­ist had con­tacted him to say that they had found some­thing.

“My boys were wast­ing sul­phur via their kid­neys.”

Ms Wil­liams said sul­phur was a lot like glu­tathione in that it played an im­por­tant role in detox­i­fi­ca­tion.

“Sul­phur de­fi­ciency im­pairs the body’s abil­ity to detox a wide va­ri­ety of toxic mol­e­cules, such as chem­i­cals and amines, which can be cre­ated from bac­te­rial in­fec­tions.”

At the time, she said she was told sul­phur wast­ing was ex­tremely rare. So rare in fact, her boys were the only chil­dren ever to be di­ag­nosed with this con­di­tion.

Un­de­terred, Ms Wil­liams con­tin­ued search­ing for more in­for­ma­tion on sul­phur wast­ing and stum­bled upon re­search by Rose­mary War­ing, an honorary reader in tox­i­col­ogy at the School of Bio­sciences, Univer­sity of Birm­ing­ham.

But this in­for­ma­tion still wasn’t the key to her boys’ baf­fling ill­ness and in 2010, Ms Wil­liams’ old­est son Ernest also be­gan suf­fer­ing from seizures.

“I was told to pre­pare my­self for my son’s de­te­ri­o­ra­tion.” De­ter­mined to stop what­ever was do­ing this to their son, they moved their fam­ily to Tiwi Is­land, a re­mote is­land off the top of Aus­tralia.

“There we lived a less stress­ful life and con­tin­u­ing to eat healthy whole na­tive foods we man­aged to get each of the boy’s mi­graines down from over 50 a year to just four mi­graines that year.”

Then Ms Wil­liams made another discovery.

“I found what was caus­ing the boys their ex­cru­ci­at­ing stom­ach pains and the seizures they had been ex­pe­ri­enc­ing – they had de­vel­oped an amines in­tol­er­ance.”

She said the pro­tein they ate could not be bro­ken down prop­erly and sub­se­quently this causes a build-up of nat­u­rally oc­cur­ring glu­tamic acid, also known as MSG, a neuro ex­ci­ta­tory toxin.

“This re­sults in dam­ag­ing their neu­ro­log­i­cal sys­tem. A few of th­ese symp­toms stem­ming from this are mem­ory loss, seizures, mi­graines, se­vere fa­tigue.”

For another five years the fam­ily bat­tled on un­til just re­cently the final and “big­gest of all break­throughs” came.

“Blood test re­sults have shown that my youngest son and I have tested pos­i­tive for what is com­monly a co-in­fec­tion called Bar­tonella. It is of­ten found in peo­ple with Bor­re­lia – Lyme dis­ease,” Ms Wil­liams said.

Lyme Dis­ease As­so­ci­a­tion of Aus­tralia pres­i­dent Sharon White­man con­firmed Lyme dis­ease was an in­fec­tion caused by Bor­re­lia bac­te­ria.

Ms White­man de­scribed it as a cat­a­strophic in­fec­tion caused by pathogens typ­i­cally from the bite of a tick.

“How­ever, emerg­ing in­ter­na­tional ev­i­dence has found the bac­te­ria in other vec­tors, such as mosquitos.”

Ms Wil­liams said she be­lieved she con­tracted Lyme dis­ease and passed it on to her boys through breast­feed­ing and preg­nancy.

How­ever, Ms White­man said peri­na­tal trans­mis­sion was not proven.

Chief health of­fi­cer of Queens­land, Dr Jean­nette Young said Lyme dis­ease was recog­nised by the Aus­tralian and Queens­land gov­ern­ments and the Aus­tralian Med­i­cal As­so­ci­a­tion but it was an over­seas ac­quired dis­ease.

“There is no ev­i­dence that the bac­te­ria that causes the

Their bel­lies were hugely dis­tended and the rest of their body was ap­pear­ing to waste away

dis­ease has been found in Aus­tralia.”

Dr Young said the Com­mon­wealth has de­vel­oped a spe­cific re­source to as­sist med­i­cal of­fi­cers with man­ag­ing a per­son with sus­pected Lyme dis­ease.

But Ms Wil­liams said she was sad “the ma­jor­ity of the Aus­tralian med­i­cal so­ci­ety still cur­rently refuse to ac­knowl­edge this ex­ists in our coun­try”.

Ms White­man said be­cause pub­lic health of­fi­cials don’t col­lect sta­tis­tics on Lyme-like diseases, it is un­known how many peo­ple in Aus­tralia have it. But from their sur­veys, they have noted more than 2000 cases.

Af­ter grow­ing ev­i­dence of an emerg­ing tick-borne dis­ease, the Aus­tralian Se­nate es­tab­lished an in­quiry into “Lyme-like ill­ness in Aus­tralia” in late 2015. Since then Pro­fes­sor Peter Ir­win, at Mur­doch Univer­sity in Perth, has been ex­am­in­ing thou­sands of Aus­tralian ticks for Bor­re­lia bac­te­ria.

Just last month the Aus­tralian Gov­ern­ment De­part­ment of Health chief med­i­cal of­fi­cer Pro­fes­sor Chris Bag­goley re­leased a progress report on Lyme Dis­ease in Aus­tralia say­ing the Aus­tralian Re­search Coun­cil funded re­search has found no trace of Lyme dis­ease Bor­re­lia bac­te­ria in Aus­tralian ticks. But it has found a new Bor­re­lia pathogen in ticks col­lected from wild echid­nas.

Ms White­man said the re­search has had the most suc­cess at find­ing pathogens in ticks but be­cause it was a vet col­lege they couldn’t link it to an im­pact on hu­man health.

“Even if pa­tients get a pos­i­tive blood re­sult, we haven’t proven Aus­tralian ticks can be com­pe­tent to carry pathogens, thus the pa­tients are de­nied di­ag­no­sis and treat­ment.

“We need to prove that those ticks bite hu­mans and if they do bite hu­mans they get that dis­ease.”

Ms White­man said if di­ag­nosed early, ul­ti­mately some­one with Lyme dis­ease could be treated with three to six weeks of an­tibi­otics and re­cover fully.

So the aim of the un­funded Lyme dis­ease Aus­tralia or­gan­i­sa­tion is to get the gov­ern­ment to take ac­tion.

“Our big­gest pri­or­ity is to get the Se­nate In­quiry re­in­stated. There were over 12,000 sub­mis­sions with com­pelling ev­i­dence but the in­quiry was halted due to the dou­ble dis­so­lu­tion.

“Our next step is to call the gov­ern­ment to ac­tion on it’s rec­om­men­da­tions,” Ms White­man said.

Ms Wil­liams said: “We are so close to dis­cov­er­ing the final missing pieces of this puz­zle.

“As a mother, my goal is to send my boys into the world armed with all the in­for­ma­tion they need to be well, to be strong and to have the qual­ity of life they de­serve.

“We are one step closer to achiev­ing the dream I’ve al­ways had for my boys - to be free of their ill­ness and suf­fer­ing.”

Be­cause blood tests are not a re­li­able way of di­ag­nos­ing Lyme dis­ease in Aus­tralia, Ms Wil­liams has started a Go Fund Me to raise the money to send her sons’ blood tests to Europe for pos­i­tive di­ag­no­sis.

“Th­ese tests cost be­tween $500 to $700 each, plus trans­porta­tion costs as well as ex­pen­sive treat­ment, which will be on­go­ing for up to two years.”

So far al­most $5000 of the $10,000 goal has been raised.

In the mean­time, Ms Wil­liams has turned to natur­opath

Amina Eastham-Hil­lier, at Noosa Holis­tic Health, to help ease her boys’ suf­fer­ing.

Ms Eastham-Hil­lier spe­cialises in treat­ing peo­ple with chronic com­plex in­fec­tions, such as Lyme dis­ease.

“I’m happy to call it Lyme dis­ease. I do a lot of work with Lyme dis­ease and know it’s here and there is a prob­lem with it here,” Ms Eastham-Hil­lier said.

“It is very sad they (Ms Wil­liams’ sons) haven’t had good health up un­til now. They’ve seen spe­cial­ists but they haven’t looked at them holis­ti­cally, as a whole.”

Ms Eastham-Hil­lier is writ­ing a book on how to treat peo­ple with Lyme dis­ease as a ref­er­ence for other prac­ti­tion­ers.

PHOTO: KATE­LYN WALL

Sharon White­man bat­tled for years to over­come Lyme dis­ease. Now she’s fight­ing for oth­ers.

PHOTO: JOHN MC­CUTCHEON

Karla Wil­liams with her three boys Ernest, 18, Elih, 16, and Khaden, 10, who suf­fer from a Lyme-like dis­ease.

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