LOOKING at Jaylene Reynolds, you’d never know she has a debilitating illness that causes her to have seizures and go through periods of time where she can’t walk.
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The 25-year-old suffers from Multiple-Systemic Infectious Disease Syndrome (MSIDS), a symptom complex of Lyme Disease and multiple tick borne co-infections.
Despite living with the condition for 13 years, it was only in October, 2016 that doctors could finally give her a conclusive diagnosis.
Ms Reynold’s symptoms included issues with her joints, problems with her balance, tremors, severe jaw and mouth pain, fatigue and seizures.
It is uncertain just how she contracted the bacteria, but it was likely from being bitten by a bug of some sort that carried the bacteria, which got into her blood, tissue and muscle fibres and later her brain.
MSIDS is often referred to as the “invisible illness” because the symptoms mimic other conditions and they can come and go.
That meant for years Ms Reynolds was being treated for the wrong things, including cystic fibrosis, chronic fatigue and Tourette’s.
“A massive, massive cost has been leading up to my diagnosis trying to figure out what it was,” she said.
“The scariest thing is because it’s been undiagnosed for so long, it has gone deeper and deeper.”
Living with MSIDS has been a tough challenge.
There would be days where Ms Reynolds was bed-bound and would miss a lot of school.
She said it was hard for her friends to understand just how sick she was as some days she would come to school in a wheelchair, while other days she could get around quite well.
“I would have a few days or a few weeks where I would be fine and then I would start having all these seizures and symptoms,” she said.
Due to the severity of her symptoms, Ms Reynolds had no choice but to leave school in Year 9, while her mother, Jacqui Monroe, had to quit her job to care for her.
For more than a decade, the family went to various doctors and specialists and had Ms Reynolds trial different medications.
“I had periods as I got older where I had been stable for a long time but I wasn’t sure if that was the medication,” she said.
“I was able to work and have my own place, but then there would be that rollercoaster.”
Ms Reynolds has since moved back with her mother, who keeps a close eye on her.
Since her MSIDS diagnosis, she has had to take 59 tablets a day and go to Sydney three days every week for intravenous antibiotics.
“I started oral antibiotics and I had improvement in a fortnight,” Ms Reynolds said. “The tremors, like Parkinson’s Disease, were gone and I got my stability and my balance back.”
Her treatment costs $3500 every month, not including travel costs, and none of her medications are covered on the Pharmaceutical Benefits Scheme (PBS) yet.
This is why the family has now started a GoFundMe page to help raise money to cover some of the costs and help with the next step in her treatment, an overseas trip.
Depending on the strain of bacteria Ms Reynolds has, she will need to go overseas to either Germany or Russia for a more specialised treatment.
Treatment will take several weeks and cost upwards of $40,000.
“Any donation would mean the world and if I could raise $200 or $2000 … any cent takes the burden off,” Ms Reynolds said.
Any additional money will be donated to the Lyme Association of Australia, which supports people with MSIDS.
To donate, visit www.gofundme.com/my-little-sisters-journey.
Since her diagnosis and starting treatment, Ms Reynolds has realised just how common the common the condition is.
She hopes by sharing her story, she can raise awareness about MSIDS and hopefully help in getting the medications on the PBS.
“There are just so many out there who don’t have the money for treatment,” she said.
“People just need to know that it is out there and it is real.
“It comes across as if it is almost unbelievable, but is just takes over your entire body.”