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Self-medication for lyme disease after doctors ignore pain

20 YEARS OF PAIN: Robert Sears has lost faith in the health system after a diagnosis of lyme disease in 1993.
20 YEARS OF PAIN: Robert Sears has lost faith in the health system after a diagnosis of lyme disease in 1993. Brenda Strong

AFTER Robert Sears was diagnosed with lyme disease in 1993, he expected to receive a course of treatment.

Instead, doctors and other medical professionals turned their backs on him, some even going as far as calling him a liar.

"I've lost 15 years of my life," he said. "I lost faith in the health system a long time ago, none of them want to help me, they just turn their backs on me."

Life changed for Mr Sears in 1992 when his body began to ache from chronic pain.

"I just started to have unbearable pain, then my body began to swell and I was uncontrollably itchy," he said.

"My head felt like it was about to explode. The one doctor who was willing to confront lyme disease left town, and then I was on my own."

Mr Sears has resorted to drinking colloidal silver, which he brews himself, in a desperate attempt to relieve his pain.

My head felt like it was about to explode. The one doctor who was willing to confront lyme disease left town, and then I was on my own.

After two decades of pain, he claims it is the only medication that will take the edge off his suffering.

Wife Jenny says it has been an ongoing struggle witnessing her loved one endure so much pain.

"It's very hard to keep going," she said. "He is in pain all the time and we know he can't access relief."

The disease's bacteria, named Borrelia, is shaped like a corkscrew and literally drills into every organ of the body, developing cysts.

In Mr Sears's case, it has caused damage to his lungs, liver and kidney.

Self administration of strong painkillers, constant application of Deep Heat and two glasses of colloidal silver a day keep him mobile.

"The doctors and the health system in this country need to wake up," he said.

"Who knows how many people are out there suffering like this, and being called liars?"

The shirt says it all at the Lyme Disease rally on the Coffs Coast.
The shirt says it all at the Lyme Disease rally on the Coffs Coast. Leigh Jensen

Government researches locations where lyme disease is found

THERE is hope on the horizon for people with lyme disease.

In a considerable leap forward, Biosecurity Australia and the Federal Department of Health are accepting submissions to identify key locations where lyme disease has occurred.

The objective of research is to formally identify locations for potential monitoring and collection programs to take place, enabling scientists to learn more about the disease.

Research may be the impetus for an institutionalised acceptance of lyme disease in Australia.

A spokeswoman for the Federal Department of Health said the initial step to combating lyme was collating empirical evidence.

"The Australian Government Chief Medical Officer's Clinical Advisory Committee on Lyme Disease heard from Associate Professor Peter Irwin of Murdoch University about his promising tick research, which involves dogs as sentinels and is also looking at human specimens," she said.

"A working group of the committee is also working on a diagnostic pathway that will be suitable for Australia."

The committee has also been developing a strong connection with Australians in the community who are concerned their illness could be lyme disease or an Australian variant

Lyme disease, commonly believed to be contracted through tick bite, is named the great imitator because the form it takes transpires differently in each new host.

Symptoms of lyme disease include seizures, fainting, breathing difficulties, severe chest pains and blurred vision.

The Federal Department of Health said submissions were being welcomed to document all believed cases of lyme disease.

"The committee has also been developing a strong connection with Australians in the community who are concerned their illness could be lyme disease or an Australian variant," she said.

"In addition, the CMO has written to Australian clinicians advising them about the work of the committee and the concerns many Australians have about lyme."

The purpose of the CACLD is to provide advice to the chief medical officer on the extent to which there is evidence of Borrelia causing illness in humans in Australia; appropriate laboratory diagnostic testing; the most appropriate treatments; disseminating information to health professionals and the general public; and the requirements for further research.

While a small step for patients living with lyme disease, research will play a monumental role in ensuring our health system can adequately confront a diagnosis.

To comment:

  • Read the discussion paper at health.gov.au/lyme-disease
  • Provide written comments "Attention Dr Gary Lum" to CACLD@health.gov.au
  • Comments about sections must include the page number and paragraph referred to
  • The closing date for comments is January 31
     

Topics:  biosecurity australia, department of health, health, illness, lyme disease



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