'I was so tired and had this feeling that I'd just collapse'
Tracy Brennan endured a long and often traumatic road before getting a diagnosis, writes Edel Coffey
Usually when we get sick, we go to the doctor, we get a diagnosis and a prescription, and we get well again. For some, however, if diagnosis doesn't come, life can take a catastrophic turn.
Tracy Brennan (39) from Harold's Cross, Dublin, was a healthy mother-of-two and had just given birth to her third daughter in July 2011 when she fell mysteriously ill.
Three weeks after her daughter's birth, Tracy became incredibly weak and developed a painful ear infection.
Antibiotics didn't help and when her daughter was seven weeks old, Tracy had to stop breastfeeding because her milk had stopped. "It was very traumatic and emotional because I had fed the others up until eight months," she said. "I was so tired and I had this incredible feeling that I would just collapse."
Unbeknownst to Tracy, she had Lyme disease, a tick-borne bacterial infection that results in flu-like symptoms and can lead to joint pain, muscle aches, tremors, heart problems, and can even result in paralysis. Tracy suspects now that she was bitten by a deer tick when she was on her J1 year abroad in Long Island, New York.
But two years ago, she had no idea what was causing her illness. She developed ear infection after ear infection. When she went to the doctor, she was diagnosed with post-natal depression and fatigue and told to rest.
"Looking back now, I so physically unwell, but at the time I just thought, 'this is what post-natal depression is like'."
In October 2011, her ear pain started in both ears and by this time she was on antibiotics and steroids and had become very anxious as a result. By December, the pain was unbearable.
"It felt like the points of two biros were meeting inside my brain and the pain was travelling outwards and it would last for a whole week. I was lying on the floor and screaming with pain."
By the beginning of 2012, she was in and out of hospital. Sometimes her symptoms would disappear, sometimes they were frighteningly apparent – on one visit, her ear canal was so inflamed it closed completely. "It was just endless pain. I couldn't function." By March 2012, she was admitting herself to A&E between her weekly visits to her consultant because the pain had gotten so bad.
Things started to accelerate. She developed muscle and joint pain. She was collapsing if she didn't eat protein every hour. She developed bowel problems and was diagnosed with gastritis. "By June, it was at its worst. It was a poisoned feeling, with pain everywhere. I would wake up with my hands curled like a crab. I could feel bone pain in my nose, and my eye sockets."
Her problems were piling on top of each another. She had chest infections, colds, chills, flus. "I remember looking at my mother, who is in her 60s and was running my life, and I remember thinking, 'Why is she okay and she's 30 years older than me?'"
When her daughter was a year old, she went back to her GP, convinced her physical illness could not be a symptom of post-natal depression.
A doctor in the Beacon Clinic suggested they rule out Lyme disease. Tracy took the two-stage standardised test for the disease, the ELISA and Western Blot, which both came back negative. Lyme testing is problematic because the test results can prove falsely positive or negative.
Around the same time, Tracy heard of a girl from Thurles who had Lyme disease and had been treated in Germany, so Tracy sent her bloods to Germany for further testing, which are not part of standard testing in Ireland, and her results came back positive for borrelia burgdorferi – the bacteria that causes Lyme disease.
She was recommended a short-term course of antibiotics but, having researched the disease, she felt long-term IV antibiotics would give her the best chance of recovery. That option was not available to her in Ireland and so she went to the centre for tick-borne illnesses in Germany.
By the time she got there in September 2012, she had mycoplasma pneumonia and chlamydia pneumonia.
The treatment for Lyme disease is tough. "When you're on treatment, you can have what's called a Herxheimer reaction, where the bacteria is starting to die and it sheds its outer skin and it feels like you're dying."
After 18 weeks of IV antibiotics, she went on a 12-week course of oral antibiotics, which finished in May of this year.
"I was very nervous coming off my antibiotics but after about eight weeks I noticed my body was faster and stronger and in July I was noticing the benefits of being off antibiotics, and feeling I was getting closer to full health.
"I feel like I'm so close to the finish line, and if I only stay at this level, that's okay too," she revealed.
"The difference in my life compared to two years ago is huge. We couldn't do anything, we couldn't plan anything, we couldn't have visitors, we couldn't go to someone's house, that was not who I was at all.
"I missed out a huge amount on life and I was feeling so dreadful and weak. That's all just turned around."
Inspired by her experience, last month Tracy addressed an Oireachtas health committee about the problems with diagnosis and treatment for Lyme disease available to patients in Ireland.
"The deer population is growing in Ireland. Every country has ticks. Probably more than 100,000 Irish people have spent their summers on the east coast of America in the 1980s and 1990s. Women tend to get diagnosed with MS or rheumatoid arthritis. How many of those women are going around with Lyme disease?
"We really just want to get awareness out there. Those people who have heard of Lyme disease have no idea that you can become as sick as I became. If people are diagnosed they can change their life. I'd love to help other patients. My prognosis now is full health."
* Be aware of ticks and which areas they normally live in.
* Wear appropriate clothing in tick-infested areas (a long-sleeve shirt and trousers tucked into your socks).
* Use insect repellents.
* Inspect your skin for ticks, particularly at the end of the day, including your head, neck, and skin folds (armpits, groin, and waistband).
* Make sure that your children's head and neck areas, including scalps, are properly checked.
* Check that ticks are not brought home on your clothes, and check that pets do not bring ticks into your home in their fur.
* Rash at site of bite or on other parts of your body.
* Unexplained hair loss.
* Headache, mild or severe; seizures.
* Pressure in head; white matter lesions in brain (MRI).
* Twitching of facial or other muscles.
* Facial paralysis (Bell's palsy, Horner's syndrome).
* Tingling of nose, (tip of) tongue, cheek or facial flushing.
* Stiff or painful neck.
* Jaw pain or stiffness.
* Dental problems (unexplained).
For a full list of symptoms see www.ticktalkireland.org