EXCLUSIVE Woman who almost DIED shares stark warning after being left permanently disabled following UTI
Talia Smith, 45, from Norwood, Massachusetts, described herself as 'a very healthy person' up until April 2021, when a urinary tract infection completely derailed her life.
Talia was prescribed what she believed was a common and perfectly safe antibiotic often used to treat the infection.
But she later learned that the FDA had released a severe warning about the medicine in 2016 due to a rare adverse reaction that could cause debilitation symptoms - something she claimed her doctor failed to tell her about.
She said the medicine left her in excruciating pain for months, describing it as feeling like 'electrical shocks' were running through her body and 'bugs were crawling' all over her.
It also affected her vision and hearing, resulted in her having severe stomach issues, and ultimately left her unable to walk.
Within five months, her condition had become so bad she could hardly eat, and she lost over 50 percent of her body weight, weighing a mere 60 pounds before she was put on hospice care.
It got so bad that she believed she was going to die after doctors warned that her organs would start failing soon.
Talia was prescribed what she believed was a perfectly safe antibiotic often used to treat the infection, but she later learned that the FDA had released a severe warning about the medicine
While she has thankfully improved since then, she still requires 24/7 care and is bed-bound - and she doesn't think she'll ever get her old life back.
She shared her harrowing story exclusively with the Daily Mail.
Talia, who worked in IT for a large healthcare corporation, explained, 'I was a very healthy person [before my UTI].
'I ate well, worked out often. I was a stepmom of two and the primary caretaker of my husband, who is a disabled Veteran of the Marine Corps. He became paralyzed after an injury in 2011.'
In April 2021, she went to the doctor after she developed common UTI symptoms. Tests confirmed she had a UTI and her doctor prescribed her an antibiotic called Ciprofloxacin.
'Before I took the antibiotic, I asked if there was anything I needed to know or be aware of since I didn't take medications and antibiotics often,' Talia explained.
'The response was that there was nothing I needed to be aware of, it was "safe and effective" and that the medication was frequently prescribed at the practice to treat UTIs.
'I trusted my doctor of 10 years so I started my course of treatment.'
Talia explained that after her third dose she began to develop 'pain in her entire body, especially her legs.'
'It felt like I had the flu, when you're whole body hurts, except I wasn't actually sick,' she added.
'As the day went on, it continued to worsen and I started having tingling and numbness in my extremities. I had zapping pains in my head and face. It was like electrical shocks.'
It got so bad that she couldn't walk - 'It was like a bomb went off in my body' - so she decided to go to the emergency room.
After describing her symptoms, the first thing the ER doctor asked her was, 'Are you taking Ciprofloxacin?'
The ER doctor then explained that the drug she was on had something known as a black box warning from the FDA - the strongest warning the FDA could give, usually for a 'serious or potentially fatal' side effect.
Back in 2016, according to the FDA website, the organization 'advised that the serious side effects associated with fluoroquinolone antibacterial drugs [like Ciprofloxacin] generally outweigh the benefits for patients.'
'An FDA safety review has shown that fluoroquinolones when used systemically are associated with disabling and potentially permanent serious side effects that can occur together,' its website reads.
'These side effects can involve the tendons, muscles, joints, nerves, and central nervous system.'
The reaction to the medicine has become known as fluoroquinolone toxicity - according to GoodRx, symptoms include 'muscle or joint pain and tendonitis/tendon rupture, nerve damage and twitching, anxiety, depression, hallucinations and memory problems, eye pain, vision loss, ringing in your ears, hearing loss, and loss of smell, and chest pain or skipping heartbeats, known as palpitations.'
In response to the fluoroquinolone toxicity, Talia then developed something called mast cell activation syndrome (MCAS), which is 'an inappropriate activation of the immune system where the body rejects everything, as a form of protection.'
And in the months that followed, she said her condition only 'worsened.'
'I was having electrical shocks 24/7, it felt like I had bugs crawling all over my body, horrendous bone and joint pain, debilitating neuropathy, vision and hearing changes, stomach problems, my body was stiffening up, and I was unable to bend in order to sit down,' she shared. 'It felt like my body was in shut down mode.'
The biggest problem she faced was difficulty swallowing, which made it extremely hard for her to eat.
At one point, she was told by doctors that she would go into organ failure soon because of lack of food.
'Within five months, I lost over 50 percent of my body weight and went on Hospice, weighing 60 pounds in September 2021,' she recalled.
Flash forward to now, four years after the ordeal first started, and Talia is still living with the effects of the condition
Before and after: 'I still require 24/7 care for my survival, as I am bed-bound and mainly get up only to go to doctor's appointments in a wheelchair,' she said
She started to believe she was going to die, and even had a priest come to her house and read her her last rites.
'I truly believed that was the end for me and made peace with it after five months of horrendous suffering,' she said, as she broke down in tears.
'This was so traumatic for me, listening to my family and friends crying and thinking that would be the last time I ever saw them.'
But Talia's husband wasn't ready to give up, and he 'made it his mission' to get her medication for her MCAS.
The hospitals had previously denied her request but he kept pushing, and eventually, they gave her mast cell stabilizers, which changed everything for her.
It gave her the ability to eat again, and by May 2022, she was able to leave Hospice and switch to palliative care.
Flash forward to now, four years after the ordeal first started, and Talia is still living with the effects of the condition.
'I am still on palliative care to this day and require 24/7 care for my survival, as I am bed-bound and mainly get up only to go to doctor's appointments in a wheelchair,' she said. 'I can't do anything by myself. I don't have the strength.'
She said she's still in 'constant pain' and she doesn't think she will ever get back to the way she was before.
'This has destroyed [me]. I lost my career, my independence, my quality of life,' she confessed.
'I can only eat five foods because of MCAS, I can't go out and live a "normal" life like everyone else.
'I miss working, I miss being able to eat whatever I want, I miss being able to workout, I miss driving, I miss my social life and the life I had with my husband. And there is nothing I can do to get my old life back.'
Talia said she later confronted her doctor about prescribing her the dangerous medication, but claimed was brushed off - and looking back, she feels like the medical system failed her.
'When I confronted [my doctor] about the black box warning, the permanent and disabling side effects and how fluoroquinolones should be used as last resort, she told me she was going to continue to prescribe Cipro because she always had and no one else had had a reaction like me,' she shared.
She has launched a petition for the FDA 'to issue informed consent for all fluoroquinolone antibiotic prescriptions,' which has over 3,000 signatures
'Not only did she have a duty to warn me about this dangerous class of antibiotics, but when I asked if there was anything I needed to know, I was told no.
'Additionally, the way she reacted afterwards, by telling me she was going to prescribe Cipro for a UTIs, despite the FDA warnings that I printed and brought to her office, was extremely unprofessional and shows her lack of caring about what happened. I felt very betrayed and abandoned by the medical system.'
Talia is currently raising money on her GoFundMe page to help cover her medical costs.
She is now on a mission to share her story in the hopes that it can stop others from making the same mistake.
She has also launched a petition for the FDA 'to issue informed consent for all fluoroquinolone antibiotic prescriptions,' which has over 3,000 signatures.
She concluded, 'If you are prescribed a fluoroquinolone antibiotic as first line, ask for an alternative, if there is one. Don't end up like me!
'Most people see the word "rare" and then disregard the warning, as they don't think that it would ever apply to them. I would never think something like this could ever happen to me, but here I am.
'Living life with fluoroquinolone toxicity is a dark and lonely place. None of us asked for this or deserve this or caused it in anyway.
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