I only recently came across an article about quinolones that finally made everything over the last 22 years make sense. I feel like a complete idiot for not putting it together long ago but I feel like that’s where my case is a little different. But oh how hindsight is to crystal clear.
Around 10-11 years old I began having frequent UTI’s, one early on was very severe and I ended up in the local children’s hospital on IV antibiotics. It was then that one pediatrician had a hunch and performed an ultrasound and found both kidneys loaded with small stones. I remember hating it when the nurses came around with new bags of antibiotics because it made me feel so terrible while it was running. I eventually recovered from the infection but strange things began to happen around that time. I still had frequent infections that my mother was taking me to a urologist for, they would always treat me with the same course of meds. After having to take them so often my mother would just give me the bottle and remind me to take it since I was so responsible with it. I only ever remember having Cipro or Levoquin when they got really bad.
I remember sitting with my mother one night in the recliner (I was a very tiny child) and out of no where I had overwhelming chest pain and feeling like I couldn’t breathe. She gave me a few minutes to see if it would pass and it only got worse and in a panic she called 911. They told my mother it was pleurisy and sent me home. These episodes came and went and new symptoms came extremely sporadically, nothing made sense. During this time I would have problems with:
prone to viral infections
increased incidents of sunburn
It would all come and go. I do remember one doctor asking if I felt bad when on Cipro, I have never felt worse when I’m on it. These problems I would have were coming way after taking the medications and I think that that is the reason we never made the connection. I saw doctors ALL THE TIME, of all sorts. They would all say the same thing, “she’s fine” or “everything shows she’s normal”. By the time I was 14 I remember hating going to another doctor only to have them dismiss me. If I wasn’t being seen for any of those things, I was being treated for a myriad of sprains, strains and broken bones. I had serious coordination problems that every single doctor would tell my mother, “you just have a really clumsy kid”.
I had an extremely traumatic even happen when I was 14, I was assaulted and have a child as a result. The only reason I mention it is because it does have some bearing on events pertaining to my health. (I have raised my daughter and she is a wonderful creature and my reason to live)
Before we knew I was pregnant I had hives for the first time, no obvious triggers. They lasted for about 3 weeks with no improvements with antihistamines. The only complication during pregnancy was having kidney stones for the majority of the time.
About a week after delivery I began feeling very feverish, malise and vomiting. More hard hitting antibiotics for a staph infection of my uterus.
There was one new thing that pregnancy brought, hip and knee pain.
So as one can imagine, the time following my daughter’s birth was extremely challenging. I was deeply depressed and suffer still from PTSD. There are times I look back on now that make me wonder how much of the psychosis was PTSD induced or drug induced. But again, during this time frequent infections were still plaguing me so I really don’t know how many times I have used quinolones but it is a large number spanning over two-thirds of my life.
Around 16 years old I changed urologists and around 17 was when I had the cystoscopy performed and they saw the stenosis of urethra and ureters. The doctor then performed hydro-dilation, which worked very well for me. I went from having infections every other month to only about 3-4 times a year. But during this time I saw a huge increase of muscle pain, cramps, extreme fatigue. I would either sleep for 12+ hours or not at all. I began having nightmares that I consider to be more like night terrors. I was so low the only thing I ever thought about was how much I wanted to kill myself. And the only thing that kept me from carrying out those thoughts was that I couldn’t leave this poor child on her own, she didn’t ask to be here any more than I did.
Insomnia has plagued me even before these drugs were ever given to me but I do think they made it even more severe. I went through a lot of psychiatric drugs around that time, oh let me tell you just how broken things are with our lack of mental health care. That’s where things start to get really hazy with what I do and don’t remember but I chock a lot of that up to the psych meds and trauma.
Here comes the really fun stuff. I began college in nursing.
In 2004 when I was 19, I woke up with an odd rash on my inner thighs, I took benadryl and went about my day. The day passed pretty uneventful until that night. I was out with a friend at a coffee shop we went to frequently when I began to feel ill. She took me home, I was vomiting and running a fever and felt in a way I still cannot explain. I drove myself to the emergency room. While waiting to be seen I started to itch, everywhere. I went to the bathroom and lifted my shirt, I’m covered in hives all over my entire body. I went and showed a nurse who got me back quicker since I didn’t initially present with that. They asked me what had changed, food, soap, anything I could be allergic to…nope. The had my history of UTI’s, no one ever put it together. They gave me benadryl and oral Prednisone, a little later is when they gave me epinephrine. In a few short minutes I couldn’t breathe, I slumped over losing control of my body, vomiting profusely all over myself and the nurse is screaming at me. I was still conscious, though I could hardly move or speak. Everyone was there in a whirlwind. Nurses trying to draw blood with no success, I can’t breathe, portable chest x-ray, left lung infiltrated 100%, right lung 45%. I’m coughing up hot liquid, hives got worse. Heart rate over 200 bps. I remember them discussing intubation, I can hear but not much reaction. Every person I could draw breath to I tell them to call my mother. They’re about to admit me, shift change 7 hours after my arrival someone finally calls my mother. They take me upstairs to a room and a new nurse is taking history. Nurse “Any allergies?” mom “not until last night”, nurse “What??” my mother goes over events of what she was told. Nurse tries to get BP on machine, no reading. Manually, can’t get it. Sonar, 60/40. The last thing I remember is her flipping me on my head in the bed and yelling for help.
I woke in ICU, the doctor asks me what brought me in. I went over all of it, they didn’t even have on the admitting forms the drugs they had given me. I stay in ICU for 7 days because my vitals are so unstable. I spent another 3 under regular observation. All anyone can tell me is that it looked like I had an anaphylactic event. I had never been allergic to anything at all. Upon discharge I still had massive hives.
My hives would sometimes stay constant for up to 2 years. Edema so bad that I couldn’t put a long sleeve shirt on, I had to wear my shoes as loose as I could. The hives were also across mucosal membranes, in my nose, mouth, eyelids. people in public didn’t even try to hide the fact that they didn’t want to come anywhere near me. Cashiers didn’t want to take my money.
After that life altering moment I sought out an allergist in efforts to never have this happen again. It took months to recover. After that event I had hives off and one and with them: vasculitis, edema, extreme abdominal pain. So much so that one day when my mother was trying desperately to find me help I told her I wanted to die because I couldn’t take the pain anymore. More ER visits. Any time for no reason I would get hives and my BP would drop very low. Over 400 prick tests were performed chasing my allergy, nothing. No one could give me any answers or relief. The pain in my muscles became unbearable. In seeking answers I began to be treated VERY VERY poorly by the medical community. They would ask me if I had a psychiatrist or outright say I was faking it all, that it was all in my head. That I was making myself break out in hives or making my blood pressure drop. They would say I wasn’t in pain, they told me I was drug seeking. All the while taking quinolone drugs several times a year. Family would act as if they thought that too. I lost friends, relationships, job opportunities, college courses because I couldn’t function. I missed so much time from middle school all the way through college. I never got a degree.
I began working in my passion, in a veterinary field as an assistant. My constant health problems and getting my body battered by working with animals took a heavy toll. I missed a lot of time. They would all say “she’s a great worker, when she’s here.”
Once my husband came home to find me unable to do anything other than lay there with my eyes like faucets, visible muscle knots across my body. I couldn’t move, I was stiff all over, almost seizure-like. He called an ambulance, they sedated me at the hospital after saying that 23 was too young to be diagnosed with fibromyalgia and saying I was abusing my meds. The nurse told my husband I might not wake up, can he care for me in this state for the rest of my life? At that point I stopped seeking help, I stopped taking many of my medications. I tried the whole suck-it-up-buttercup routine. Doctors were rude to me, I would often leave appointments in tears asking myself “are you really this f***ing crazy?!” Was it all in my head?
I often got bronchitis and “walking pneumonia”, they would give me Avelox.
Trying to keep a medical journal with all of this was so depressing I had to stop. No obvious pattern, again, I wouldn’t get any new or worsening symptoms until weeks after taking those drugs. I was conditioned to trust these people, these doctors.
I had on the job training in assisting veterinarians, so my knowledge of medications really only extended so far. I knew there were certain medications that were not to be given to puppies and kittens but I didn’t know why. Thinking back to all those times I filled prescriptions for pets taking that same class of drugs makes me feel physically ill.
Throughout all of this time we were trying to figure out if I had some sort of rare ailment or something genetic. My paternal grandmother had too experienced much of what I was going through, so we logically thought there had to be something there. Well there was, urethral and ureter stenosis. She too had be on those drugs many, many times. We were just looking in the wrong direction.
My hearing has never been great, as a kid my best friend asked my why I always looked at everyone’s mouth when they were talking, or why was I always so loud. Little did I know I learned to speach read. Around 27 years old I had a sharp decrease in my ability to hear. I was also on the cusp of my interstitial cystitis diagnosis. They threw all sorts of drugs at me. I had a hard time understanding men when they talk or I couldn’t understand dialog on TV no matter how loud it was. It started interfering with work so I saw an ENT, low pitch hearing loss of unknown cause. After being given Levoquin even though I had negative urine cultures, things got so much worse.
I began experiencing tendonitis, I would get searing pain through my feet, dangerous when carrying an intubated and sedated animal. I couldn’t hold the dental scaler without extreme pain in my hands. I was in a very toxic animal clinic and made the decision to leave the veterinary field altogether because my body could no longer take it. I had broken down enough to seek help, I couldn’t live with the pain. I spent so much time bed or couch bound, the pain unbearable, so heavily drepressed.
I was so broken down I began taking Lyrica, desperate to get a grip on things. I am so very happy to now be off of it.
I became allergic to red dye. Out of the blue, I noticed after drinking red gatorade (to restore the electrolytes that my antidepressant screwed with), my mouth was itchy very tight throat feeling. So I gave it a few days and tested my theory on something simple and sure enough. I have had a severe reaction to it, blistered mouth and all.
Months later I noticed the same feeling but had had nothing with red dye. After recounting what I had eaten I zeroed in on milk, but not all dairy. Something they put in general whole milk set off my contact allergy, creamer and cheese…all fine. I can drink organic whole milk without a problem.
While I hold no religious beliefs but I will admit that sometimes it can’t just be coincidence. After walking out of the job abruptly I landed a job with an acupuncturist. I am exactly where I am supposed to be. I am very proud to be helping others with pain and dysfunction, acupuncture really can help. It doesn’t help every one for every thing but it is certainly worth the try. There is some pain that it hasn’t helped much on, but keeping other pain down makes it a bit easier to cope with the really hard stuff. I love working with pregnant women who use acupuncture to enduce, they all say it makes the babies go nuts moving all over the place.
By 2017 I was fitted with my first pair of hearing aids, I have severe loss in my right ear and moderate/severe on the left. A few months ago I stumbled across an article a friend had posted about FQAD. Suddenly my entire life was in focus. I was floored. The very same people who treated me so miserably were the ones who had made me this way. I was so angry, at them, at myself. How had I missed this. Every single unexplained bodily problem, it all made so much sense. And worse, that my child had taken this for her first UTI. I poisoned my kid. She has some of the same problems I have but to a much much lesser extent.
My boss is from China, he was a surgeon there and told me how much he hated those drugs and never used them because of their danger. I took this information to my GP who seemed like this had crossed her mind before but I got the feeling that she wasn’t allowed to talk about it. She said “there is no way anyone can prove that this isn’t what’s wrong with you”
My pain has been so significant since I last took a quinolone. Recently I woke in the night with extreme pain on the left side of my neck, shoulder and arm. GP said upon assessment that I have two bulging discs, absolutely no trauma to cause it. I refused the steroid treatment my GP wanted to prescribe, Prednisone was another drug I had horrible reactions with. She wanted to send me for MRI and to a cardiologist about my worsening tachycardia but alas, no insurance. She expressed concern about the drugs effects on my heart, strongly urged me to call if anything changed or got worse.
It has gotten worse, I have had a pain in the left side of my chest and in that same area on my back as well. This does not feel like the pinched nerve pain and sensations caused by my discs. This is like someone is driving a wedge through my chest and back trying to meet in the middle. I called my doctors office and they said that she would be out on the only day I could come that week and she would be out all of the following week. They strongly advised me to go to the emergency room, again no insurance. They persuaded me to see one of the others, I wish I hadn’t. “Gaslighting” is what they call it, it happens so often it has it’s own term. He was very quick to dismiss me. He said if I couldn’t afford the nuclear stress test that he couldn’t help me. He glazed right over me mentioning my history with those drugs, right on to saying that if it gets worse to go to the ER. He said because of my age I am not at risk, because there’s no family history I am not at risk. My husband piped up to say that “32 is pretty young to have significant hearing loss, nothing about her is textbook”. And we were out the door, dismissed per usual. I can’t go into the ER and rack up thousands of dollars in debt for them to dismiss me as well. I can’t afford to risk that money, even for my health, just to be turned away again.
So for now I am hoping that I can speak with my GP when she returns. I hope that if something does come of this gut feeling I have, that they can fix it in time.
I’ve taken so much for so long, the damage is very real and very in my face. It’s imposible for me to try to project thought of the future, no one knows if I will get better or worse. I have had to steel myself, to push any fear way down and simply hope for the best until a better option comes my way.
I try to keep happy moments at hand and focus on them, keeping myself in a positive direction is challenging but essential. My boss agrees about all that’s wrong with me and says he is very worried about my condition. Since working for him my quality of life has drastically improved. I do take Baclofen for my muscle pain, it’s a big help but doesn’t last very long.
Acupuncture has helped with a lot along a wide range but for very specific types of pain it doesn’t always help. I sleep much better and am even taking my Ambien less often which is HUGE for me. I’m no longer on Lyrica or antianxiety meds. If I’m feeling anxious I use a chinese herb sold as Soothewell, works like a charm. Formula 303 which is passion flower, magnesium and valerian root works well for some spasming and as a natural relaxant. I have been getting massages for over six months, we have had to cut back on cupping and deep tissue massage due to the tendon problems but it’s been pushing daily pain down little by little. There are Chinese herbs for just about everything and they have been a help as well. I also get regular chiropractic adjustments and that’s been a help, I’ve seen a chiropractor for years.
Stretching daily helps with tightness, ice goes a long way to reduce inflammation and is very underrated. Epsom baths with essential oils are very relaxing and can at least cut back on some of the pain. I look for every tiny bit of improvement and count it as a small victory.
And for many different infections be them viral or bacterial Chuan Xin Lian which is Isatis root, dandelion, and andrographis has kicked every UTI I have had over the last 12 months. As far as pain goes, nothing beats cannabis. No, it doesn’t make me pain free but it makes most days manageable. I have found that personally smoking it doesn’t come close to the benefit of eating it.
I find that mental well being effects all of the symptoms that I have. I have cut away extra stress in all the ways I can. I have had to cut off many people to focus on getting better. Finding something cathartic for yourself has done so much for me. I love gardening, I can lose myself and shut out all else. It’s a good problem solving tool as well. Fresh air! Not being kept up within four walls is cleansing, even if you’re just sitting. I have to limit physical exertion but when that’s the case I turn to succulents, little outdoor tasks. Pick up a hobby, when I’m confined to rest I crochet while listening to the TV. It helps with restlessness, it makes time spent inactive worthwhile, you’re getting SOMETHING accomplished. Reading can be great, exercise your brain when you can’t exercise your body.
Keep your home bubble calm, as it’s your daily retreat from the world. Believe in yourself, you can get through this.
I think there is hope.
So over the years I have experienced:
Widespread muscle spasms
Severe pain at muscle attachments
Chronic dry eye/mouth
Strange sensations in extremities
Sensitivity to hear/cold
Tremors and spasms
Sudden onset of contact allergies