LIFE had been hard enough for Jo Daly, a mother of three who has been battling the debilitating symptoms of Lyme disease for four years. Then she discovered that her daughter, Jessica, had also contracted the infectious illness.
But there is a glimmer of hope for the Youghal duo, as they are about to travel abroad next month to undergo treatment — but the lifeline comes at a price and they need to find €18,000 to fund their trip.
One of the fastest growing diseases in the western world, Lyme disease is known as ‘The Great Mimicker’ because it displays the symptoms of other diseases like multiple sclerosis, chronic fatigue syndrome, fibromyalgia and arthritis; it is almost impossible to diagnose.
“There is no reliable blood test in Ireland for Lyme disease,” says Jo. “Anybody can get it. A lot of people think you must go abroad to get it, that is not true, I got Lyme by walking my dogs in Youghal.
“The lack of awareness of it. not just by the public but also by GPs, is frightening. We do not have any posters in our national parks, where ticks are rampant.
“People need to be aware of Lyme disease. The microbe that causes it is borrelia bugdorferi. When a tick bites you it can leave any number of the 300 known bacteria in your body, which is why no two people with Lyme have the same symptoms. It can travel into every part of your body causing untold havoc. It hides from your immune system while attacking it at the same time. It also moves around the body, causing pain in different places.
“When this is mentioned to doctors, many are not believed, with suggestions that the issue must be more psychological than physical.
“I know at least 15 people in East Cork alone who have the disease, not to mention the amount of people who have it and don’t know,” says Jo.
When her 21-year-old daughter, Jessica started to display the same symptoms as Jo, it was a difficult time.
“Jessica is a keen camogie player and she played for her club and for Cork,” says Jo. “She had no energy, suffered severe weight loss and memory problems. After numerous tests, her GP mentioned that she was low in B12.
After three months of B12 injections during which Jessica’s condition did not improve, Jo sent her daughters blood to Germany, where she tested positive for Lyme.
“We were devastated. I would rather have the symptoms 10 times worse than for Jessica to have this for the rest of her life. She is only 21. If Jessica goes out, she needs to take a bag of meds with her and watch herself all the time.”
Jo adds: “There is no financial aid for Lyme disease in Ireland. Treatment is very expensive as to build the immune system you are on very expensive supplements, herbs and antibiotics, you also try a lot of alternative treatments to try and ease the symptoms – none of these items are covered by medical insurance or the drug refund scheme. I have spent €12,000 since August with no end in sight.”
Treating Lyme disease is practically a full time job, and Jo says: “We are on nearly 30 tablets a day. You never see me out. I used to love to walk. Now I worry about ending up in a wheelchair.
“The only place I go is to get groceries. I don’t buy anything else, most of my income goes on treatment which for two of us costs nearly €1,000 a month. I got a loan to sustain us for now.
“What I can eat is limited — all grains, gluten dairy and sugar have to be cut from our diet as much as possible. I try to eat mostly organic plain food and have a daily detox routine to try and help eliminate the bacteria from the body.”
Their best shot of remission is to travel to a clinic abroad. The pair have been accepted to a clinic in Cyprus in July where they will undergo alternative therapies eight hours a day for five weeks.
The treatment includes Intravenous Ozone therapy as well as Hyperbaric Oxygen Therapy, ensuring the ozone gets into the tissues. This can be successful in killing bacteria and building the immune system which in turn can force Lyme’s diseaseinto remission.
Jo and Jessica must raise €18,000 to cover the costs.
“It is expensive and treatment will not be easy, but it is our only chance at some quality of life,” says Jo.
Jessica and I will have to watch ourselves forever regarding diet, lifestyle, and stress management. I hope there will be a cure found in the next few years.”
It’s been a long, arduous journey.
“Since 2013 I’ve been going from pillar to post; from person to person,” says Jo.
“For three years I visited numerous doctors. Lyme disease is a very isolating disease. A very worrying factor is that there is no blood screening for it in Ireland.
“While being mis-diagnosed all these years, I could have donated blood and passed this onto someone else. That’s frightening.”
“It is absolutely shocking that we have to go abroad for treatment, that diagnosis and testing is not adequate and even when we do have positive results from accredited labs, we still cannot get the help or financial relief we need in Ireland. Lyme patients are being ignored and pretty much left on their own to get help.”
Lyme is a pandemic disease. There are more people get it than HIV and breast cancer put together annually, but there is little research and awareness.
“You can be bitten as a child, and the disease can lay dormant in the body for years until something triggers it — that is why a lot of people don’t remember getting a bite,” says Jo.
“Because the Irish tests are only 30% reliable, having a false test does not mean you do not have the disease.
“Most of us send our blood to Germany privately to get a more accurate test at huge expense. We are all part of the EU, these tests should be recognised.”
Going back to the early days of illness, as she sought a diagnosis, Jo did not have the bull’s eye rash or flu-like symptoms normally associated with Lyme. Instead, she began experiencing severe pains in her joints, starting in the ankles and quickly spreading over time to her knees.
“It burned me to walk,” says Jo. “I had to immerse my legs in buckets of ice every day after work. I had no quality of life.”
“I had burning, tingling and moving pain in my joints. I had heart palpitations, numbness in my face and memory loss, which was frightening. My cognitive ability was challenged. I had no energy to do even the most simple of things.
“I attended nine doctors, numerous hospitals as well as having ongoing blood tests, scans, MRI’s with no answers.”
Jo had several incorrect diagnoses and the only time she got respite from the pain in the last few years was when she had a spinal block and when she underwent a hysterectomy.
“I was put on morphine,” says Jo.“It killed the pain for a while.”
She now knows that Lyme’s disease was the reason for the hysterectomy and also why she has two blocked arteries in her legs. She also had to have a blood transfusion last year.
“At that stage, I was forgetting simple things like how to drive a car, how to count, I would meet somebody in the corridor and forgot what they said seconds later. It was like they spoke to me in Chinese. I could hear them talking but not understand what they were saying. It was like there was cotton wool in my brain.
“On top of everything else I was worried I would have to give up my job if things got worse.”
Jo was at her wits’ end when a chance meeting sent her down the alternative route.
“An acquaintance recommended I go for Bio-resonance testing that uses frequencies to pick up abnormalities in the body. It was the first time Lyme disease was mentioned to me along with a host of other problems,” says Jo.
“I was low in iron, b12, vitamins A,K,D, serotonin and dopamine. I had parasites and inflammation — I now know that these deficiencies go hand in hand with Lyme. The bacteria feeds off your minerals which is why you feel so low and tired all the time.
“I discovered Tick-Talk Ireland, a support group that encourages awareness, prevention and treatment, and after reading some of the stories, and comparing symptoms, I realised that I ticked many of the boxes relating to Lyme disease.”
Now Jo had some idea what she was dealing with.
“There is currently only one infectious disease doctor in Ireland who will treat Lyme patients,” says Jo. “His books are now closed to new patients due to the high demand of Lyme patients.
“I was lucky that I got in early and I sent my blood to Germany to be tested.”
Jo’s blood tested positive for Lyme and several co-infections.
The upsetting thing about Lyme is that, if it is caught in the first month, you can cure it with antibiotic. After that there is no cure which is why early diagnosis is so important.
“Lyme burrows and hides in the tissues and can be resistant to antibiotics. It is a cousin to syphilis and it needs designer drugs to treat it… which we do not have.
“Lyme also can activate every virus that you ever had that makes it even harder to treat.”
Where does Jo think she contracted Lyme?
“We had a dog which we think may have died from Lyme two years ago — 30% of Lyme patients get this disease from an animal.
“Ticks can’t jump but can hang onto dogs hair while walking in long grass and bring it into the house.”
A number of fundraisers have been set up to try and help Jo and Jessica get to Cyprus.
There is a coffee morning on Saturday, June 17 at 10am and a Table Quiz on June 30 at Youghal GAA Club.
To donate to Jo and Jessica’s Gofundme page, see www.gofundme.com/jo-jess-lyme-treatment-fund