In 2014, through a Freedom of Information request, an FDA Pharmacovigilance Review document was made public. The review, dated April 17, 2013, and signed by an FDA Division Director, clearly links the use of fluoroquinolone antibiotics to neurodegenerative disorders.
It hit me hard when I saw the report, yet it confirmed what my neurologist had been saying all along.
I took Levaquin in 2006 for a suspected sinus infection. Four years later, after suffering through 3 years of frightening neurological symptoms, I was diagnosed with the progressive form of a neurodegenerative disorder called Neurosarcoidosis.
Neurodegenerative disease describes the progressive loss of structure or function of neurons including death of neurons. Neurons don't typically reproduce or replace themselves so when they become damaged, or they die, they can't be replaced.
Being diagnosed with Neurosarcoidosis was a frustrating journey because it mimics other diseases. It is only when other diseases are ruled out and invasive tests are performed that it is diagnosed.
At Princeton Medical Center, I underwent a lumbar puncture. The spinal headache following the procedure lasted for 5 days. When the results came back, I sat in the neurologist's office trying to process it. They found elevated protein levels and elevated lymphocytes. A brain MRI found space-taking lesions. A biopsy of brain tissue showed granulomas- the tell-tale indication of Neurosarcoidosis. Brain biopsies are risky and most doctors don't like to do them. However, it is the only way to definitively diagnose it.
Typically, our bodies fight perceived threats by mounting an inflammatory response. With Neurosarcoidosis, this response becomes excessive and ends up producing small clumps of cells that can cluster together in the brain, or any organ in your body.
When these clusters become large enough, they can begin to interfere with the functioning of your organs. The inflammation causes irreversible scarring in the affected organ.
Two- thirds of Neurosarcoidosis cases go into remission within a decade of diagnosis. The other 1/3 of cases fall into the category that I am in: the unrelenting, progressive form of this illness that leads to organ impairment.
Granulomas in the brain cause seizures, chronic meningitis, memory and motor impairment, and many other debilitating symptoms. It is extremely hard to treat.
I take medications to try to slow the progression. But a time will come when my memory and cognitive function will decline, as will my motor function and I will no longer be able to take care of myself. I am 44 years old, still relatively young, yet my symptoms often make me feel much older.
I frequently lose my balance. In fact, I lost my balance this afternoon, fell into a lamp, and shattered the light bulb. My vision is getting increasingly worse, and I have short term and long term memory loss. I am noticing differences in my speech and I often switch words mid-sentence. My spatial orientation has become more severe as has the anomic aphasia (problems recalling words, names, and numbers) and I have to compensate by getting to the word, name, or number in a round-about manner. Luckily, I have people around me who know what I am trying to say and they'll give me clues so I can arrive there on my own. It is when I am on a conference call or in a meeting with people I don't know that I struggle the most.
Had I known in 2006 that an antibiotic could lead to a neurodegenerative disease, I would have never taken it.
My hope is that the Citizens Petition submitted by Dr. Charles Bennett to the FDA leads to stronger warnings to include Mitochondrial Toxicity. Losing control over your mind and body is not something I would ever wish on anyone.
For more information, please visit http://www.saferpills.org/citizen-petition/.
Quinolone Vigilance Foundation