Karla with her three boys Ernest, Elih and Khaden
Karla with her three boys Ernest, Elih and Khaden john mccutcheon

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

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.

"There is no funding available for research or tests as they are classed as having a 'rare' condition and have been placed in the too hard basket by the medical society," Ms Williams said.

So she has resorted to finding an answer on her own.

"I have been researching since my eldest was born 17 years ago. We have come so far but still have a way to go."

Ms Williams said it all began when Ernest and Elih were babies.

"They became extremely unwell, vomiting repeatedly and crying persistently."

She spent much of her time as a new mum at the doctors trying to find the cause of what was making them so sick.

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.

"There was no way this could be gastro as doctors persistently diagnosed. Any food they ate passed right through them."

This was when Ms Williams started doing her own research, feeling scared and helpless as no "doctor was willing or able to get to the bottom" of this mystery illness.

"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 had to resort 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.

Ms Williams said the test results 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."

Meanwhile, Ms Williams continued to search for other foods her boys could tolerate.

For the next 10 years, she and her husband fought every day to keep their boys as healthy as they could.

And 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' paediatrician telling me that the specialist had contacted him to say that they had found something.

"My boys were wasting sulphur via their kidneys."

Karla and her boys in 2010
Karla and her boys in 2010 Crystal Spencer

Ms Williams said sulphur is a lot like glutathione in that it plays a very 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.

"I was so happy that this had been discovered yet I was devastated. If they were the only children on this planet with this then there would be no research on 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.

"She had been doing research on sulphur wasting for at least 20 years. My boys weren't alone!" Ms Williams said.

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. They told me his seizures could likely become a lot worse and he may need to go onto medication for the rest of his life."

Determined to stop whatever it 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."

It was while they were on the island, eating a native diet that 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."

Ms Williams 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."

Symptoms her sons suffer from.

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.

"We've even had doctors report people getting sick after bed bug infections."

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

"I grew up out in the country always coming home with ticks on me. 

"There is a very good chance I have passed this onto my boys unknowingly through perinatal transmission."

However, Ms Whiteman said perinatal transmission was not proven.

"There are studies showing evidence of this but not the quality research required to say what they need for proof.

"But many doctors have reported see it in a practice - whole families who have the disease."

Chief Health Officer 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 disease has been found in Australia.

"The conclusive identification of the bacterial species that could cause a Lyme-like illness in Australia has yet to be made.

"I can appreciate this diagnostic uncertainty is not ideal for people who believe they have a Lyme-like illness.

"Doctors use their best clinical judgment as to the cause of any illness their patients may be experiencing and act accordingly," she said.

Dr Young said the Commonwealth had developed a specific resource to help medical officers with managing a person with suspected Lyme disease called An Australian guideline on the diagnosis of overseas acquired Lyme disease/Borreliosis".

"The Queensland Department of Health has widely distributed to general practitioners in Queensland," she said.

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

"There are so many people just like us who are left alone to fight this."

Ms Whiteman said because public health officials did not collect stats on Lyme-like diseases, it was unknown how many people in Australia had it.

But from their surveys, they have noted more than 2000 cases.

"In Australia on average it takes 12 years to reach a diagnosis because of the lack of recognition.

"And this lack of recognition is based on a 1994 study that looked at three strains of Borrelia and didn't find any of them in ticks.

"But they did note 'spirochetal artifacts' and Borrelia is a spirochete. There is now more than 300 strains of Borrelia recognised globally, the research continues to determine which ones make people sick."

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 had 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.

"The clinical significance of this finding is still to be determined and should not be overstated. The department will remain engaged with Professor Irwin to consider the implications of this research for human health in Australia," CMO Professor Baggoley said.

Dr Young said the health department would provide further information on the outcomes of the current studies into a Lyme-like illness in Australia and the inquiry underway in the Australian Senate once they were completed.

"An interim report from the Senate Committee overseeing the inquiry was released in May 2016 and recommends the continuance of the inquiry into the 45th Parliament of Australia; education and awareness raising in the community and with the medical profession; and ongoing consultation with relevant stakeholders."

Ms Whiteman said the research at Murdoch University undertaken as part of the inquiry had had the most success at finding pathogens in ticks but because it was a vet college they could not link it to 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.

"Due to a lack of contemporary research, Lyme-like illness has to be considered an emerging illness in Australia, meaning the patients are the evidence and should be treated with the best of the medical knowledge of the day while research is urgently prioritised."

Ms Whiteman said the Australian Government was relying on 1994 research which failed to find the US single strain of Borrelia Burdoferi.

Fast forward 20+ years' worth of publications worldwide and there is now recognition that Lyme disease can be caused by more than one single strain of Borrelia.

"The health minister and health department should be drawing a line in the sand and getting medical treatment for patients now while research is urgently prioritised."

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," she said.

"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.

If you would like to donate you can do so here.

In the meantime, Ms Williams has turned to a naturopath to help ease her boys' suffering.

"Amina specialises in treating woman and children and has helped over 1000 people with Lyme-related infections," Ms Williams said.

Amina Eastham-Hillier is a naturopath at Noosa Holistic Health.

But she says she is not your normal naturopath.

She 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," she said.

Ms Eastham-Hillier also calls herself an integrated naturopath because she's happy to work with doctors.

"A lot of these chronic complex patients have sought medical advice first and doctors are looking for a label.

"But they're not going to get one answer as they have a whole bunch of different infections."

Ms Eastham-Hillier said many of the patients she treated had long-term symptoms.

"Chronic fatigue, severe sensitivities to food, chemicals, depression, anxiety - they have a plethora of symptoms."

When treating a new patient with a chronic complex infection her first step is to do comprehensive analysis from birth history to gene testing.

"A lot of my patients have infections that have not been picked up by regular tests.

"When I start treat my patients the first thing I do is look at their symptoms, this is the most important thing."

Ms Eastham-Hillier then conducts gene testing as "patients with genetic single nucleotide polymorphisms (SPNs) are already susceptible" to such infections.

"Like the Williams boys, they weren't born toxic but they can pick things up in utero."

Tests are also done for traces of heavy metals, mould allergies, bacteria levels and parasites.

"Many of these chronic complex patients have high levels of mercury, lead and arsenic and a low mineral status - low magnesium, zinc, and iodine which are all essential to detoxing.

"These patients aren't able to detoxify so their sulphur and glutathione pathways also need to be addressed.

"They also have mould sensitivities, low good bacteria and parasites. They are also often very acidic.

"So all of these areas have to be looked at and addressed."

Ms Eastham-Hillier said once she had the results she looked at treating the main symptoms and inflammation.

"We need to reduce inflammation, enhance liver detox, look at gut health and then start working on immune system and strengthening it using herbs.

"When they're okay and the foundations are right then I start working on bacteria and parasites but often by the time I start working on parasites they have none."

Ms Eastham-Hillier said all this could be done through diet and the right herb and nutrients.

"It's a comprehensive treatment plan but doesn't have to be complex.

"With these types of patients there is no quick fix. It can take up to two years to treat."

Ms Eastham-Hillier has been treating Ms Williams' boys for a number of months now.

"The Williams' boys have everything I have mentioned. It's like a jigsaw puzzle - the boys have many of the symptoms and all of them contributing to the state that they are in.

"It is very sad they 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 currently writing a book on how to treat people with Lyme disease as a reference for other practitioners.

Alexia Purcell is APN Australian Regional Media's social media editor.

Connect with Alexia on Twitter or on Facebook.

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