Comment from Wood Alliene
AnonymousSupportIndividual
Summary: Johanna Ihli, a private individual who suffered severe, permanent health consequences from fluoroquinolone antibiotics, supports the petition to remove these drugs from the market. She argues that fluoroquinolones should be banned due to their affinity for human mitochondrial DNA and calls for penalties for doctors who prescribe them improperly, as well as financial compensation from pharmaceutical companies for injured patients.
Regarding fluoroquinolone toxicity syndrome. I was young, healthy, an elite athlete, mother of 5 when I experienced a severe adverse reaction to a fluoroquinolone antibiotic, and it destroyed my body and my life. Also as a result, I now react to other antibiotics that I previously tolerated well before the adverse even. Nitrofurantoin now causes pulmonary toxicity. Bactrim brought back the acute phase of FQTS, except much worse, with aneurysms of my aorta, causing a mass effect on my trachea, because I happen to have a RSAA with an ALSA forming a vascular ring around my upper trachea. I experienced severe difficulty in breathing, went to the ER twice, they turned me away saying anxiety or gas. My shortness of breath was so extreme, I could not sleep for 8 weeks. It took 6 weeks to see a pulmonologist who ordered the CT imaging that caught the mass effect from the vascular anomaly. I also lost the ability to walk as my muscles had no ATP, my joints became inflammed and stiff, and I have a crushing sensation when I stand up, making it painful to be on my feet. This all happened with the first fluoroquinolone event and even worse after the Bactrim event. I also developed transitional apnea (sleep onset apnea), other central sleep apnea, and central sleep hypoventilation. This CNS damage is the most distressing, discouraging, and dehumanizing part of this hell. It is permanent. Because I was damaged by a fluoroquinolone, I now have fatal reactions to other antibiotics, which puts me in the unique position of not being able to treat infections. If I get another UTI, or pneumonia, or anything, I actually have to chose sepsis and death. This is unfair to my family and children who depend on me. 1) Fluoroquinolones should not be on the market because they do have an affinity for human mitochondria DNA enzymes. They will cause damage that may be unnoticed by the patient. There's no way to know if the patient detoxes slowly due to certain polymorphisms, and if FQ levels get too high, mitochondrial damage will be significant. 2) because the consequences of an adverse event is catastrophic, there should be penalties for doctors who prescribe it in violation of FDA guidelines, or who prescribe it along side a steroid, NSAID, or benzodiazepine, since these drugs are know to magnify the damage of fluoroquinolone toxicity. Most doctors do not know this fact, but if there were consequences, then they would know it. 3) when patients experience an adverse reaction, doctors deny and gaslight, even though these are known side effects of the drug. Our lives and livelihood are completely destroyed, and we have no compensation. There is nothing medical doctors could do to help, however functional medical doctors do offer support to help patients heal, such as IV magnesium infusions, NAD infusions, vitamin cocktails, glutathione injections, ozone, hyperbaric oxygen chambers, etc, all of which can help heal. However these treatments are extremely expensive. The pharmaceutical company and the medical companies that employ the doctors should be made to provide financially for these treatments, and also for compensation for emotional trauma, loss of income, and any medical bills relating to the damage of fluoroquinolones. I had several trips to the ER because of cardio toxicity and arrhythmia. Now I have a permanent level 1 AV block. The list of everything I've had to endure is extensive. I only wish you could also experience this so you would do something about it. Bottom line: because fluoroquinolones have human targets, they should not be prescribed at all. They should not be prescribed twice to a patient, since the risk of an adverse reaction increases with each successive pill. Doctors should be punished who prescribe this medication in violation of FDA guidelines or alongside drugs that magnify the damage. Pharmaceutical and medical companies should compensate those who are injured (if its so "rare", then whats wrong with making them pay when toxicity does happen?) These side effects aren't like side effects of other drugs, they are disabling, dehumanizing, and potentially permanent. Doctors need better education in medical school about the true nature of fluoroquinolone toxicity syndrome. Doctors who deny and gaslight should be punished. Thank you.