Karl's Story by Mualla Mcmanus

Karl McManus was bitten on the chest by a tick in July 2007 at a wildlife park on Sydney’s Northern Beaches. A week later he developed flu-like symptoms but, due to a lack of knowledge about Lyme disease in Australia, the tell-tale signs and the potential seriousness of the tick bite were overlooked.

Five weeks later Karl experienced the further symptoms of Lyme disease – sweat attacks, muscle twitches, mood swings and a darkening of his complexion. He became sensitive to light and noise and refused to see his friends. He began to lose dexterity in the fingers of his left hand and also started to get muscle wasting.

 

 
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Karl McManus
In November 2007 Karl saw a neurologist who acknowledged his muscle wasting and muscle twitching but, despite inconsistent diagnostic test results, diagnosed Karl with multi-focal motor neuropathy (MFMN). In December Karl was started on an immunosuppressive agent, intravenous immunoglobulin (IVIg) high dose for MFMN. After each infusion he got worse and by the eighth infusion in March 2008, his tongue started to twitch.

Karl’s own search on the internet indicated that he may have had Lyme borreliosis, but because the NSW Government's view (set out on its website at that time) indicated that there was no Lyme disease in Australia, it was thought unlikely that Karl had Lyme disease.

My medical search of the literature found very similar clinical cases to Karl’s. All these cases had neuroborreliosis, (Lyme disease with predominantly neurological symptoms), however, Karl’s ELISA assay blood tests in Australia came back negative for Lyme disease. Karl could see that he was getting worse on the IVIg, so this treatment was ceased and antibiotics were started. He then suffered a Herxheimer reaction (this occurs when large quantities of toxins are released into the body as bacteria are killed); this reaction confirmed that Karl had a serious infection and thus supported a Lyme-disease diagnosis. Antibiotics were subsequently tailored to Karl's tolerance levels.

It was not until April 2008 when Karl's blood was sent to the US accredited Tick-Borne Diseases Laboratory, IGeneX, and his tests came back positive not only for the Lyme-disease bacteria Borrelia and but also for Babesia duncani and Rickettsia (both well known co-infections transmitted with Borrelia) that our suspicions of Borreliosis were confirmed.

At the same time, we found a journal article in which Dr David Martz described his own symptoms and recovery from what neurologists had initially diagnosed as motor neurone disease (MND) but in fact was Lyme borreliosis and other tick borne infections. An abstract of this article can be found at US National Library of Medicine.

We began the treatment protocol for Lyme disease described by Harvey and Martz, and Karl started to get his muscle strength back and was feeling better in himself. Unfortunately in August 2008, he got the flu and regressed. He experienced the symptoms of babesiosis and Lyme – extreme night sweats and muscle twitches – as well as a loss of function in his hands. He could not find a doctor in all of Australia who would care and treat his neuroborreliosis.

There were constant denials of the existence of Lyme disease in Australian ticks, and efforts were made by doctors to diagnose Karl as suffering from something else – often MND, or multiple sclerosis (MS). Without proper monitoring he continued to deteriorate.

In April 2009 a trip to a Borreliosis clinic in Augsburg, Germany, which uses integrated medicine, proved very positive. On returning to Australia Karl continued with IV antibiotics and started to gain muscle strength again between July and October. However, in December 2009 Karl's tongue became paralysed and he began to lose weight because he could not consume sufficient calories, so he was admitted to hospital in Janury 2010 to have a PEG tube inserted into his stomach.

The hospital staff refused to accept that Karl had Lyme disease and wanted to diagnose him as having MND or MS and classify him as terminally ill. They ignored his infection and treated him as if he had MND.

They restricted Karl's fluid intake which prevented him from flushing out the toxins. They misdiagnosed his swallowing problem and prescribed thickened fluids which he could not move with his paralysed tongue and could not eat. He lost a further 5kg. Furthermore, a hospital dietitian assumed that someone with multiple infections could put on weight with 2000 calories per day, whereas a private dietitian we consulted calculated that he needed minimum of 3500cal/day.

Before entering hospital Karl weighed 55kg, could walk around the house if someone held his hands and was able to talk, although his speech was slurred. He came out of hospital much worse in every way.  In four days Karl had deteriorated so much that he could not walk, talk and looked like death warmed up. The neglect by the medical system accelerated his deterioration.

Karl passed away suddenly on 14 July 2010 after catching the flu: due to the paralysis of his tongue, excessive mucus choked him.

During the seven months prior to Karl's death we had managed to reverse his deterioration – he had gained15kg and his muscles had stopped twitching; he had budding small muscle growth in his arms and he was feeling positive as he could feel his body starting to repair and grow muscle. Karl's decline and death was due to the medical system ignoring his condition and refusing to accept he had borreliosis and treat him accordingly.

Karl did not want anybody to suffer like him ever again.

The aim of the Karl McManus Foundation is to erode the barriers to the recognition and treatment of borreliosis, especially neuroborreliosis, in Australia and to contribute to world knowledge about borreliosis and other tick-borne infections. 

For a list of our Aims and Mission Statement, visit the
Mission Statement page.
For a list of our Research Directions visit the Research Directions page.

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Growing evidence of an emerging tick-borne disease that causes a Lyme like illness for many Australian patients

On 12 November 2015, the Senate referred the following matter to the Senate Community Affairs References Committee for inquiry and report:

The growing evidence of an emerging tick-borne disease that causes a Lyme‑like illness for many Australian patients.

 
Submissions should be received by 31 March 2016. The reporting date is 20 June 2016.
 
Nov 17, 2015

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