Michelle H’s Story

Female 2I was given Cipro IV in the emergency department at Legacy Emanuel Hospital without informed consent because my appendix ruptured, then after I was given morphine and admitted to the surgical ward, a nurse persuaded me to agree to Cipro IV without offering alternatives or explaining the risks. The only risk I was informed of was of “a slight possibility of achilles rupture, but only in athletes and people over 60”. I did not have a fever and my abscess was contained, and I had stayed home for four days after my appendix ruptured because I thought I had the stomach flu. My hospital records indicate I was alert upon admission. There was no reason to lie to me to gain consent except for the convenience of the hospital staff, and there was no reason to push me to accept such a toxic drug when I had a history of tolerating azithromyacin without adverse reactions.

I feel especially violated because I have Asperger Syndrome and an analytical mind. I’m used to making decisions based on having relevant facts. Legacy Emanuel staff took advantage of my inherently trusting nature to convince me to take a toxic drug, then repeatedly dismissed my concerns and my suffering as Cipro destroyed my body.

The first symptoms I noticed were heavy sweating and loss of my sense of time. I thought they were due to the infection in my abdomen, but the symptoms never went away. I only recently learned from my medical records that I was being given Benadryl while in the hospital, but I don’t recall why. After I was discharged, I ended up back in the emergency department due to severe reactions to Cipro pills, so I’m guessing the Benadryl was given to suppress my allergic reaction to Cipro.

The months following Cipro were a nightmare. My menstrual cycle immediately became erratic and I didn’t menstruate for 2 months, then I was plagued by frequent, heavy periods with extreme emotional fluctuations. Four months after Cipro, I suffered my first tendon injury. Shortly after my injury, not realizing that my health would continue to decline for the next two years, I invested my savings into building a food cart. I had always been active and loved building things, and had successfully started and operated several businesses, so the project was well within what I knew my abilities to be… except it wasn’t, because my abilities were deteriorating. Within six months from my hospital stay, I aged what seemed to be decades. I constantly battled diarrhea. My eyesight started to deteriorate and my eye sockets burned like acid had been poured in them. My bladder lost tone and I started visiting the bathroom every 30 minutes to urinate. My hair fell out and my teeth became loose. I started experiencing heart palpitations. I was exhausted, and waking up to urinate every three hours wasn’t helping. I was painfully thirsty and would wake with my mouth so dry I could barely open it, and my eyes full of a pasty white glue-like substance that made my lids stick together. I begged my doctor, Hanny Tan, for help and she insisted that everything was due to my fibromyalgia “progressing”. I knew something was wrong, but I didn’t realize it was linked to Cipro. Even when I developed plantar fasciitis, Dr. Tan seemed oblivious to the connection between Cipro and connective tissue disease.

I had surgery on my uterus 9 months after Cipro to control the erratic and heavy bleeding, and I suffered my second tendon injury 11 months after Cipro, but because I was still pushing myself to finish my food cart, I continued to work too hard although I could never manage to work more than 4-5 hours a day. I was just too exhausted. I opened my food cart 14 months after Cipro, and closed it for good 18 months after Cipro when I was overtaken by vertigo, tinnitus, double vision, nausea, bone pain, and a feeling like acid had been thrown over my entire body. My son found me on the kitchen floor one day a month later, screaming, and called an ambulance. The emergency room doctor at Legacy Emanuel diagnosed me with anxiety and released me to walk home. After a follow-up with my primary care doctor, I was shunted from specialist to specialist and accumulated dozens of diagnoses but no answers, and no acknowledgement that my suffering was due to Cipro. I developed balance issues and started running into things, dropping things, and fell several times. My legs became difficult to control, and I lost manual dexterity and strength. My primary care doctor eventually passed my case to Genevra Liptan because I refused to accept that this was just a case of “progressing” fibromyalgia. As a person with Aspergers, I’m hyper-aware of my body, and there were too many changes across too many bodily systems to be accounted for by a sudden progression of fibromyalgia.

My shoulder was surgically repaired 23 months after Cipro and I regained full motion of my dominant arm, but the surgical site still pains me over a year later.

Dr. Liptan took my case seriously when I informed her that if my pain level could not be improved by the time my youngest child reached 18, that I would be ending my life because the pain was unbearable. She suggested supplements that I’ve since discovered are helpful for oxidative stress. I was sent to Elizabeth North, a neurologist, who performed blood tests, ordered a brain MRI, and tested me for peripheral neuropathy. My test results were normal. She said I could have autonomic neuropathy. I asked for a referral to a neurologist who could assess me, but OHSU denied the referral. I was also sent me to a uro-gynocologist who expressed concern about my painful thirst and urged me to see an endocrinologist. The endocrinologist insisted that my only problem was psychological thirst, even though nocturia should have ruled that out. My GI function continued to deteriorate and by 27 months after Cipro, I was experiencing bladder incontinence and had experienced bowel incontinence. At that point I decided to do something drastic, and because no doctor could help me, I performed a fecal microbiota transplant from fecal matter donated to me by a friend. I’m still angry to this day that I was forced into a situation where I was so sick I could barely walk, could barely leave my house because of long-term diarrhea, yet had to be my own doctor and perform such a procedure without being able to screen my donor. Despite the risks, I felt like I had no choice. The FMT worked, which freed me to try to pursue help from other specialists.

I was seen by Jeffery Degen, a physiatrist, who informed me that the damage to my tendons is permanent and a result of Cipro, and further informed me that he could not diagnose me with flouroquinolone toxicity, and that indeed no one would, and that I was on my own when it came to trying to find a treatment that would help me, because he could offer none. I asked him if amputating my feet would help, and he said that I’d experience ghost pain if I did. He referred me for four sessions of physical therapy on my wrists, which made no difference. He referred me to a physical therapist for my feet, and she refused to work with me because I was unable to walk on the treadmill.

When Dr. Liptan left Legacy Health 30 months into this agonizing journey, she referred me to Christopher Hadlestad, who performed a full metabolic panel several visits later and found that I’m no longer able to process methylated B12, although it had worked very well for me prior to Cipro. Switching to a different form of B12 has helped my thirst level tremendously and improve my heart palpitations, but has not touched my tendon pain nor improved my vision. My doctor’s opinion of my case is that stem cell therapy could help reverse the tendon damage, but it is not a therapy that is covered by Medicare, so until I can raise thousands of dollars on my own while somehow managing to buy the supplements that keep me functioning even at the low level I’m able to manage, I must live in excruciating pain every day that sometimes makes me hope I won’t wake up. In three short years, I went from an energetic artist and entrepreneur, full of life and dreams, to someone who just hopes that she can bear the pain for one more day. I’ve given up on the dream of rebooting my career, or of being able to run a business. I’ve given up on having a reasonably clean house or a productive garden. Worst of all, I’ve given up the hope of being creative, and I’ve given up on a social life. Just living is hard enough.