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Dublin: 14 °C Thursday 2 July, 2020
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'I was treated disgracefully': Fears over possible widespread misdiagnosis of Lyme disease

One woman with the condition is administrating antibiotics herself at home, as doctors have refused to recognise the condition.

Image: ticks via hut

A LACK OF awareness among some medical professionals in Ireland could be leading to the misdiagnosis of Lyme disease.

The condition, also known as Borreliosis, is a bacterial infection passed to humans through bites from an infected tick.

These ticks can be found right across Ireland, and are concentrated in the west.

Symptoms include fatigue, muscle and joint stiffness, pain, swollen glands, headache, fever, and in some cases a distinctive “bulls-eye” rash.

Left untreated, the condition can lead to heart failure, Bell’s palsy, joint conditions and nerve damage.

Awareness

Sufferers and support groups believe that a lack of awareness among some doctors in Ireland means that symptoms are not recognised, and can lead to test results being misinterpreted.

One patient, Sarah*, told TheJournal.ie about her illness and revealed she was misdiagnosed for more than two years in Ireland, despite having many of the symptoms.

A diagnosis was manipulated to ensure a hospital inserted a tube to allow her to administer intravenous antibiotics.

“I was given several different diagnoses, ranging from Multiple Sclerosis to chronic fatigue… I was even told that it was psychological and to go home. It’s disgraceful how I was treated,” Sarah said.

Lyme disease Pictured left are the materials required for the IV, while on the right is Sarah after having the IV line inserted. Source: TheJournal.ie via Sarah

She later traveled abroad to undergo further tests in a private clinic, where she discovered she had Lyme disease. She was also told that the condition had become chronic because it was left undiagnosed for so long.

Sarah spent months undergoing expensive treatment, at her own expense, in the clinic abroad.

“I returned home, and I switched to oral antibiotics,” she said. “I had a good GP who was willing to continue with what [the clinic] was recommending.”

However, she was told by staff at her local hospital that “under no circumstances would they look at the diagnosis” she had received abroad, meaning the continuation of her much-needed treatment in Ireland was at risk.

In response to queries from TheJournal.ie in relation to this, the HSE said:

There have been reports of certain private laboratories in other countries who provide a Lyme diagnosis service and unless they are operating to a very high quality, then their results cannot be assured.

Sarah’s condition failed to improve, and she was advised to go back on intravenous antibiotics. This involved having a tube inserted into her chest to allow the drugs to be administrated, a procedure that could only be carried out in hospital.

“I couldn’t tell the hospital that I had Lyme disease. I had to say I had chronic fatigue. Even after getting home I had to source my own saline for the drip,” Sarah explained.

I continued taking the antibiotics for the next twelve months administrating the drugs myself at home. This was all new to me – I went from working in shop to sitting at home administrating my own IV.

“Things are improving,” Sarah said, “I’ve gone from sitting in a wheelchair to being back driving. I’m still just in bed everyday, but at least I’m not a complete vegetable like I could be if this went untreated.”

Picture 2 More equipment used by Sarah. Source: TheJournal.ie via Sarah

“I’m still extremely sick … several other issues have now come up. For example my adrenal glands has essentially been knocked out.”

Sarah’s story isn’t unique. She said many others have shared her experience of being on a merry-go-round of misdiagnosis.

Mary Smyth, information officer with Tick Talk Ireland, a group aiming to raise public awareness of Lyme disease, said some doctors are failing to “clinically diagnose” the condition.

“The blood tests carried out are very hit-and-miss,” she explained, “It’s the same all over Europe.”

One of these is the ELISA test, which can give false-negatives and false-positive readings, depending on certain factors.

File,13964,en The spread of the hard-bodied tick across Europe. Source: HSPC

Smyth said it could be the case that doctors are carrying out an ELISA test once, finding that it comes up negative, and deciding that the patient doesn’t have Lyme disease.

However, in the early stages of the condition, there may not be enough antibodies in their system to register a correct reading on the test.

A statement from the HSE explained that a two-stage approach is taken when diagnosing the disease – “a sensitive enzyme immunoassay (EIA)  which includes the ELISA test as an initial, screening step, followed by Western Blot”.

The Western Blot is another common test, but is often more accurate.

The statement continued:

The first ELISA is a screening test (these tend to relatively inexpensive) to see if someone may have the disease (if they do not then the result can be relied upon).  If there is a suggestion that they might have the disease, the second stage Western Blot is used as a confirmatory test.  It is important that these tests are undertaken in light of the patients clinical condition

Smyth added that another problem is the lack of Lyme Literate Medical Doctors (LLMD) in Ireland. At the time of publication the HSE was yet to confirm how many – if any – such doctors work in Ireland.

“My husband, who was diagnosed with Lyme disease, goes to four or five different specialists, but they’re all looking after individual problems,” she said.

Smyth believes health and safety officers should begin treating Lyme disease with the same priority as more well-known conditions like Weil’s disease.

A statement from the HSE notes that it undertakes annual awareness-raising on the topic of Lyme disease, most recently between 19 and 25 May this year.

Lyme disease is a notifiable condition in Ireland.

There are thought to be anywhere between 50 and 100 cases per year, but the Health Surveillance Protection Centre (HSPC) concedes that this figure could be higher.

In Europe, the incidence is highest in people aged 30-50 years, but is also quite common amongst children.

The HSPC advises that when walking in grassy, bushy, or woodland areas, particularly in May and October, to:

  • Cover your arms and legs with suitable clothing
  • Use insect repellent
  • Check your skin for ticks every four hours, and children’s skin and clothes regularly
  • Check thoroughly for ticks at the end of the day
  • Remove any ticks as soon as possible. Advice on doing so is available here.

More details from the HSPC are available online here.

*Name has been changed. The identity of the patient quoted in this article is known to this website.

First published 8.30am

Read: Going to be outside this summer? Get protected against Lyme Disease says the HSE >

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Nicky Ryan

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