When ALS is actually Lyme

By Maree Kratzer

Many patients of tick-borne illness face an uphill battle for recognition in Australia. Not only do they navigate the physical, emotional, financial and social implications of chronic illness; they also battle a lack of scientific knowledge and medical support that denies them a healthy future.

Karen and Rene, a couple in their sixties, are one example of a situation affecting thousands of patients nationwide.

Karen has never left Australia. She spent the first 40 years of her life in Mount Isa and remembers acquiring numerous tick bites. She says that tick bites and ‘tick fever’ were common in the area. At the time, she didn’t suffer any significant ill effects, but recalls that approximately 20 years ago “Suddenly, I wasn’t a healthy person.”

Karen’s decline into chronic ill health

Karen was diagnosed with Hashimoto’s disease and Juvenile Rheumatoid Arthritis. In a short period of time, she contracted Ross River Fever, the Epstein-Barr virus and pneumonia.

She recovered, only to suffer a cerebral haemorrhage in 2011. The following year, her health began to spiral in a way from which she’s never recovered. She developed muscle spasms, a severe sinus infection, debilitating eye pain, high blood pressure, further thyroid problems, chronic pain, dizziness and tinnitus.  Then her teeth began falling out. Doctors were at a loss to explain her symptoms. 

In 2016, a review of past blood tests revealed she’d had an elevated white blood cell count for at least nine years, indicating infection.  As the causative agents of tick-borne disease may lie dormant for years, an Infectious Diseases Specialist decided to explore this possibility. Analysis of her blood by a prominent local laboratory revealed multiple strains of Rickettsia, a bacteria transmitted by ticks.

Rickettsial testing has now been completed for Karen three times by the same lab. The second and third tests returned negative and positive results respectively, despite being conducted on the same blood sample. When she questioned this, Karen was told that the results can depend on who interprets the test. This was her introduction to the uncertainty of laboratory testing for tick-borne diseases.

Karen was prescribed a short course of doxycycline and advised that no follow up was required. This antibiotic, often included in ‘combination therapy’ used to treat Lyme disease and Australia’s Lyme-like illness, worsened her symptoms when used in isolation. Her condition continued to deteriorate. She likened her pain to “ripping muscles off bone.” She developed insomnia, night sweats, brain fog, uncontrollable shaking of her right arm, and had to rely on a walking stick to get around.

Through her own research, and that of her friends, she came to suspect Lyme-like illness. Her symptoms matched a checklist compiled by international Lyme expert and consultant to the Australian government, Dr Richard Horowitz. As patients of Lyme and Lyme-like illness usually have low levels of a natural killer cell called CD57, she requested this test. Karen’s count was exceptionally low.

Karen was clinically diagnosed with Lyme-like illness and co-infections by a GP experienced in the diagnosis and treatment of Lyme and Lyme-like illness. The GP also noted damage to her myelin sheath, a sign often attributed to Multiple Sclerosis or ALS [M1]. 

Karen looked forward to undergoing appropriate treatment. However, shortly afterwards, the Australian Health Practitioners Regulation Agency (AHPRA) placed conditions on her GP’s licence which prevent him from treating Lyme or Lyme-like illness. The Australian Chronic Inflammatory and Infectious Diseases Society (ACIIDS) believe he is only one of their members specifically targeted by AHPRA. Unfortunately, this has led to a reduction in the number of doctors willing to treat Lyme-like illness. Karen was unable to find another treating doctor and has instead utilised carefully researched alternative treatments that do not require a prescription. During this time, her husband Rene cared for her at home.

Rene’s decline mirrors Karen’s

In 2016, Rene also became ill, with some of the same symptoms Karen had had, as well as severe muscle spasms, night sweats, nausea and fatigue. His muscles began to deteriorate, and he was eventually diagnosed with the neurodegenerative disease ALS, or Motor Neurone Disease. Like Lyme-like illness, this condition is clinically diagnosed; there are no definitive laboratory tests. Rene has two of the required markers, deeming his diagnosis ‘probable’ rather than ‘definite.’

With the similarity of Rene’s symptoms to her own, and testing that confirmed she had myelin sheath damage consistent with ALS, Karen worried that there was a connection between their illnesses. Knowing that Lyme is dubbed ‘The Great Imitator’ as its symptoms mimic those of other illnesses, including neurodegenerative disorders, Karen asked that Rene’s doctor investigate the similarities between their illnesses. Her request was ignored. 

A friend paid for the couple’s blood to be tested by ArminLabs, a German lab specialising in tick-borne diseases. [LDAA Note: ArminLabs is run by [M2] Dr Armin Schwarzbach who is a globally renowned expert in vector-borne diseases, was expert witness to the Clinical Advisory Committee into Lyme disease, witness to the Lyme-like Illness Senate Inquiry and consultant to the Department of Health in regards to tick-borne diseases in Australia.]

Karen tested positive for the three most common strains of Borrelia known to cause Lyme disease, and several other infections, including Mycoplasma. Rene tested positive for only one Borrelia strain, but multiple other infections, including Mycoplasma. Mycoplasma is commonly found in patients with Lyme and ALS.

Despite test results validating their clinical diagnosis of Lyme-like illness, neither were able to receive treatment, as there is an illogical misconception that test accuracy from overseas labs is inferior to onshore labs.  In reality, ArminLabs are global leaders.

In late 2016, Karen suffered a heart attack. She later remarked “I hoped it would kill me as I was so incredibly ill.”

In 2017, Rene was admitted to hospital with near fatal pancreatitis. Extensive blood tests were completed. The results were delivered on a weekend, and incredibly, as there were no pathologists available to interpret the results, the tests were forwarded to a German laboratory. Rene’s doctor informed the family that the German lab had reported the presence of an unidentified bacterium.  No attempt was made to further investigate this discovery, and Karen observed “That doctor went from being extremely ‘hands on,’ to avoiding me like the plague.”

At the time of writing, Rene is awaiting ALS and Mycoplasma treatment from his neurologist. When Karen suggested that Lyme-like illness also be considered, he slammed his fist on the desk and exclaimed “It doesn’t exist here!” Rene’s GP also refuses to consider tick-borne illness.

Just weeks ago, Karen suffered another heart attack.

Now receiving palliative care, Rene has a lung capacity of 52%, has all but lost his speech and his ability to swallow, needs a walking aid and neck brace, he continues to care for Karen, with the help of Home Care services.

Rene (pictured below) on 19th February 2019.

Lyme LDAA - Rene Michaelis with Lyme

After years of alternative treatment for Lyme-like illness, Karen says she is now “nowhere near as sick as she was.” She has now stopped her treatment in order to afford similar treatment for Rene, although she acknowledges that at this late stage it’s unlikely to be successful.

Karen says “We haven’t begun to have a proper life together, I was supposed to get better, we were supposed to press ahead with our hopes and dreams, and I’m being told it is never going to happen, that the man who has been my tower of strength, my rock for the past ten years is going to be taken away from me. That we only have 6 months to 2 years left together… When René passes away, I will have nothing… I’m too unwell to live alone. We have no life, every day is Groundhog Day. No hope for the future, our dreams have turned to dust…. There is no longer any justice or compassion in this country.”

Family and friends help where they can with meal preparation and financial support. But what Karen and Rene need most is a government that is dedicated to thorough investigation into what’s making so many Australians chronically – and sometimes terminally – ill. There is no confirmed cause for either of their debilitating conditions, laboratory tests are inadequate and there is no apparent interest from the medical profession in exploring avenues that may save their lives. In fact, they have been subject to evasion and downright refusal.

While battling serious illness and coming to terms with their own mortality, Karen and Rene have been forced to take on researching their illnesses and possible treatment options. This is occurring NOW, in a first world country in which treatment for Lyme-like illness was considered a viable diagnosis just twenty years ago.

Patients and patient advocates have done all they can – it is now up to the government to ensure that these are the last Australians to suffer needlessly.

LDAA Update, March 7th 2019.
We are saddened to inform you of Rene’s passing at 10.15pm March 5th, 2019. He was 68 years old. We are endeavouring to be of support to Karen in this time of loss.

Lyme LDAA - Condolences for Rene and Karen