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
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.
Sharon Whiteman battled for years to overcome Lyme disease. Now she’s fighting for others.
Karla Williams with her three boys Ernest, 18, Elih, 16, and Khaden, 10, who suffer from a Lyme-like disease.