I wanted the opportunity to tell my story because it is the story for many, many, many people worldwide and it seems so many of them have no voice because they don’t even know or they don’t understand what ails them – they are denied even that dignity very often by the medical fraternity.
In June 2012, I was given a 5 day course of Cipro for a mild UTI. At that point I was 51 years old, in excellent health, walking around 45km per week, practicing Bikram yoga up to 3 times per week, slim, agile, flexible with an active practice as a Leadership and Executive Coach, renowned for my excellent memory and cognitive skills and my high energy. Very conscious about my nutrition, I was very concerned about taking any chemicals especially medications and so as a rule did not.
When I sought assistance it was because I was due to travel from South Africa to the United Kingdom to attend a training course and I felt I needed to resolve the mild UTI under the circumstances. I was very clear with the general practitioner (not my regular doctor, she was away on vacation) that I was very active and that I did not take medication. At no point was I warned that this antibiotic could harm me certainly no mention of tendons and I was not told to stay away from exercise or anything of that nature whilst on the antibiotic.
After the first tablet I developed a fever but I put that down to the infection I had sought help for. By the next day, I felt excessively tired and unwell but again put it down to the infection. By the third day the UTI was greatly improved but I felt awful. However, I completed the course as I had been taught not to stop in the middle of a course of antibiotics and also because the UTI was improved and I needed to get overseas. The day after I arrived in the UK, things went horribly wrong – this was 2 days after I completed the course of Cipro. I had searing pains in my Achilles and calves, my knees were swollen and very sore and my heels and soles of my feet were agonizing. My feet were hugely swollen and the pain was just horrific. I could not walk, could not put any weight on them and neither could I even rest my heels on a bed. It was awful. Even with crutches it was hard to manage as both my left and right legs and feet were affected although my left was worse.
I had no idea what was happening. I sought medical advice, the doctor on call who came to the hotel, had no clue but referred me to a specialist unit in the Royal Chelsea Hospital. They could only see me days later – no help at all as I was only there for a few days and needed help urgently. As soon as I could manage, I went for X-Rays to check for stress fractures – nothing showed. Nobody had any ideas on this although a nurse at the Northampton General Hospital outside of London hinted to me that this was not the first time he had seen something like this and he warned me not to take any medication!
All of this cost a great deal of money – I was in a foreign country and using travel medical insurance!!!!! The doctor on call alone cost R2700,00.
On my return to South Africa I went straight to see my regular doctor. When she saw me she was shocked by my appearance, haggard from pain and muscle wasting and struggling to move. She knew immediately – she simply said, “please tell me you haven’t had any medication I don’t know about”. When I said Cipro, she put her head in her hands and said “I am so very sorry for you Debbi” and then she told me that I had probably been floxed. However nothing she told me that day was even close to the reality of what was to come, for in her mind it purely affected tendons! And worse she had no solution for me, did not know what to suggest other than physical therapy.
For the next year I struggled along alone, trying to find my way. I would not consult any medical doctors as I knew they would try to give me drugs and my gut said that was the worst possible thing I could do. I have learnt to totally disrespect Doctors, for so many of them simply choose to believe everything that medical reps tell them and they act negligently and ignorantly as a result. So I lived in constant pain and misery as it cycled around the body, predominating in my feet and Achilles and calves but now also in my wrists, shoulders and elbows and worst of all my thumbs and hands. It was difficult to do things like blow dry my hair or cut things but I persevered. I spent thousands on physical therapy, and supplements. I was determined not to be disabled so did what little exercise I could. I had to buy a whole new wardrobe of shoes with heels, I bought inserts for them to help cushion my terribly painful heels. I attended very expensive Physical Therapy twice per week. I battled UTI’s. For the longest time I could not do Yoga or walk very far. Standing was horrid, not only did it hurt but I also felt like I could not stay upright for long – I literally had to lie down. It seemed like my blood pressure could not regulate itself and my balance went from fantastic to very dodgy.
Using stairs was risky, I often misjudged where to step. I felt weak and tired and lethargic, very emotional and most of all terrified that this was going to be my life…. Coming from the place I had been, it was too awful for me. My sleeping was impaired, I woke at 3 in the morning in the grip of terrible nightmares – something that I had never had before and filled with anxiety and feeling as if I could not breathe. My hearing seemed diminished for a period of time. My vision was weaker, I struggled to focus and stopped even trying to read as seeing double and triple at times was just exhausting and totally depressing. My scalp was terrifically painful to even touch and felt weird…
I became sensitive to everything. Allergies to food, chemicals of any sort – make-up, shampoos, face creams, cleaning products for the home, smells. I was unable to eat things without getting really ill – it was just a nightmare to even think of going out and enjoying life as I had. These allergies meant increased tendon pain and neuropathies in the hours and days and even weeks that followed exposure.
Around 13 months out, things improved a lot for me around the pain. I found some supplements that really eased the pain – however they caused cysts in my breasts and so eventually I had to give them up. I returned to Yoga and struggled and worked through the frustration I felt at only being able to do a fraction of the postures that I had been doing for the best part of 35 years of my life. But I persevered and learnt to trust this body of mine all over again. I had horrible times – once when I was doing a handstand against a wall, my right shoulder literally caved in and I fell crashing to the floor, hitting my face and head and stunning myself (and everyone else in the room). I had no warning, no sense of feeling weak or tired, it just collapsed. Aware of how frail I was, I lost my self confidence. But I am a fighter so I dug deep and started walking a bit each day. Sometimes it was so painful I felt nauseous and often it exhausted me so that a few hours later I would have to rest or go to bed but I knew that I had to keep moving.
I still endured regular pain and discomfort but mostly I managed well and felt better. Then I became very stressed through work and grew super fatigued all of a sudden. Suddently my self confidence was low, I needed to build it up as my cognitive functioning was declining dramatically at around 2 years and 4 months out. In October 2014, I was exposed to other medication following a porcupine quill penetrating my finger and this set off an incredible chain reaction which was to continue unabated for 9 months. Now I struggled to read, I could not remember from one line to the next what I had just read (I have always read and had a photographic memory, was a strong reader) and felt bewildered at times and overwhelmed easily. I noticed that I no longer took things in my stride. I became reluctant to go out as driving was intimidating – it almost seemed that I could no longer judge how close cars where to me and I felt anxious about that. Increasingly I stayed at home, lacking the confidence and energy to get out and about. I often could not find words when I was speaking (I am considered very articulate with an extensive vocabulary) and I seemed to do things so much slower. I felt very old. My skin losts its tone and as did my body, my muscles felt really weak, my core strength was a fraction of what it had been.
This was all very alien for me. As a rule, I am singularly confident, very outgoing, very independent and very motivated. Here I was feeling old before my time, exhausted, scared, vulnerable and no longer willing or really caring to do much. Unable to make even the simplest decision at times and feeling overwhelmed and confused about nothing.
Worse – I felt ashamed of this new person and totally disconnected from her. I felt even more isolated than not just going out, as I did not want to share my cognitive issues with even those closest to me fearing that I had something degenerative such as Alzheimers. I tried to hide the pain I was in, how I felt, my fears and terrors and how I was struggling. I told no one…
It truly was terrible.
People started commenting more and more about how tired I looked. I was asked continuously if I was ok. In the mirror an old woman looked back – prior to this people had thought that I was at least 10 to 15 years younger than I was – a youthful skin, no lines or wrinkles, thick hair no grey etc. Now my skin colour was grey, wrinkles were everywhere, my hair so ugly and dry and thin, I felt I moved differently, so carefully so slowly… I had lost my sparkle my friends said, my eyes were dull, I was uncommunicative or seemed angry and abrasive.
I found work very tough, I had a high pressure project on the go and it was taking all my energy just to get through a basic day. Eventually I resigned from my own project – a dream project that I had initiated and got approved with a major Auto Manufacturer. It was worth R12 million and was a culmination of my life’s work and I felt I had to walk away from it – exhausted, unable to cope with even the smallest upsets and suffering and when my partners were difficult, I could not see my way to managing the admittedly difficult relationships.. Previously I would have taken it in my stride and managed them all!
I took me months after I left the project to get back any energy. By November / December 2014 things got really bad for me, the cognitive decline was tremendous. I was suffering terrible dry eyes, headaches, at times I was unable to stay upright for more than a few hours, I found myself in bed more often than not – secretly as I did not want anyone to know.
We have a housekeeper – she has known me for years. She became so alarmed one day at my deterioration and condition that she called my best friend and told her I was truly ill and needed help. She pleaded with me to do something as she said she saw how weak and tired I was.
By November my light sensitivity had developed into full blown photo sensitivity. I could barely handle any light and going out in the bright South African light was impossible. My skin burnt so easily – never had that before ever! In December after just 15 mins in the sun I had such a severe sunburn on my body that it took 3 weeks to heal.
I was very emotional and found it difficult to concentrate. I felt increasingly isolated and disconnected from those I loved. I was no longer affectionate to my partner and was not interested in physical contact. I just did not care frankly. My once perfect home was now not so perfect as I struggled to find the energy to do anything and things just got ignored. Paperwork piled up. Financially I suffered as I just did not have the energy to chase work or actually do it. I did the bare minimum of client contact and even then was totally exhausted.
By January 2015 I decided that I had to heal myself and get beyond this otherwise I was going to kill myself. Thoughts of suicide were in my mind daily at this point and I developed a self hate. My hair had become so brittle and was falling out by the handful, my nails were no longer growing and looked strange. I had strange swellings on my body especially my ankles. My veins were super enlarged and bulging – previously you could not even see my veins. I was clearly retaining water and had put on 7 kg’s that no matter what I did would not shift. The pain in my shoulders, rib area and forearms was horrid and unrelenting….
I got online, found the support groups, read up as much as I could manage considering my cognitive decline was great, made some notes, got really mad as I read how these drugs have just taken people”s lives apart and finally found a way forward for myself.
I decided to consult a Functional Medicine specialist, I found a Yoga teacher who specializes in healing Yoga and decided to spend whatever it took to get well. It has cost me thousands since January alone – probably in excess of R70 000,00 all told – special blood tests to find out what was going on – they showed my Vit D was non-existent, my ferratin terribly low, my homocysteine out of control, I had major thyroid antibodies – almost 300, consistent with Hashimotos, low cortisol and on and on it went. I did genetic testing – I have MTFHR with COMT and other mutations which might explain why I was so susceptible to this horrid chemo therapeutic drug being touted as a safe cure all for everything. I did allergy testing – it showed sensitivities to 27 out of 70 foods tested!
I started a process of rebuilding my body – the Yoga helped a lot with stress and getting some confidence back but also caused terrible pains in my tendons at times. It was awful to actually go to Yoga as mostly I could not do even basic flows as I could not remember what the difference postures were and had to be reminded step by step. I despaired totally at times. My neuropathy intensified as we tried different supplements – there were many I simply could not tolerate whatever I did. Gradually we made some headway but just as often I went backwards, suffering terrible side effects from new vital supplements. Headaches of epic proportions, neuropathy everywhere including my face, feeling freezing cold for hours at a time, horrid night sweats, agonizing pain in my muscles and joints for days at a time, inexplicable bruising. My energy level slowly improved and I started sleeping better not having as many of those terrifying nightmares. I started to feel hopeful. Once we started on a mitochondrial renewal programme I really felt the improvement – my brain fog lifted, my memory improved a lot, I was able to make decisions again, my judgement slowly improved. I felt a little less anxious about doing things and more able to cope with life.
I live on a severely restricted diet – no wheat or grains at all including oats and spelt, no dairy at all of any kind, no eggs, no beef, no pork, no cinnamon, no coffee or black tea, no soya, no msg, no chilli, no beer, no spirits – no nothing really. I am super careful about what chicken I eat – fluoroquinolones are given to chickens and also farm grown fish…. As you can imagine going out is an issue and as we travel a lot and entertain this has put a great strain on me and my partner often. If I do unwittingly eat something bad it results in days of suffering – terrible neuropathy, blinding headaches, horrendous tendon and muscle pain!!! And sometimes those flares lead to sore throats and chest infections which lead to bigger flares that last weeks and months. I have also lost my sense of taste to the larger degree. I have got used to being hungry as sometimes there is simply nothing safe I can eat… Contrast this with visiting top restaurants all over the world and in South Africa and eating the very best variety of food – that was my life before… Now I am a picky, difficult guest! But I need to do this to have a quality of life in terms of energy and suffering.
Despite having Hashimotos diagnosed, based on blood tests for antibodies – my thyroid shows as being truly perfect according to my scans, really in great condition according to the specialist who could not explain this anomaly. I can – the fluoroquinolones cause such chaos in our bodies we end up with symptoms that actually mimic auto immune disease – there are plenty of us who can tell you about that.
The reality is I don’t know what is going to rear its head next as a symptom and I don’t know from day to day or week to week how my health is going to be. It can hold steady for days, weeks even months and then suddenly a flare. Why, how – always leaves one frustrated and baffled and frankly just plain angry.
These drugs kill and maim our mitochondria. Our very DNA is altered and we bear the consequences of this forever more it seems.
I live in fear truthfully, fear that I will have a flare that will send me back to that stage when I was reclusive and living as a stranger to myself, cognitively impaired with no sense of purpose and no energy. I live in fear that this destruction of my mitochondria will give me cancer, I live in fear that my tendons could degenerate and I end up bedridden as so many fellow floxies have…. Or that the pain from neuropathy will take over….
Mostly I am enraged that just 5 days of these tablets took away my youthful, playful, healthy, self and cost me thousands of rands, many opportunities in the prime of my life, much sorrow and very nearly my life as I contemplated ending it. I am devastated that having lived my live so carefully, so healthfully and so mindfully as I had always envisaged a very active and healthy old age that this company was allowed to just take that away from me with no repercussions. Worse they have done it to so many and many have no idea what has hit them. Even worse, I live with the fact that my late father was probably poisoned like this and died from it following surgery, brain surgery…
May my loved ones never have to endure this.
I deserve recognition for my suffering – I want an acknowledgement from the manufacturer that this drug is lethal and that they knew that from the start. I want the assurance that others will not have to suffer this and that they will be protected from that fate by the FDA and other bodies globally. I want to be compensated financially for the money I have had to spend to try to contain and repair this damage that has been willfully inflicted on me by an industry that is not involved in healthcare but in sickcare as they seek a recurring stream of revenue and I want to be compensated for the money that I have lost as a result of my inability to earn the money that I am capable of. Mostly I want to make sure that people all over know how dangerous these medications are and why they should never ever take them as a first resort.
Thank you for reading this. Because we are so unacknowledged in our suffering, it is deeply important for us to have the chance to be heard and recognized.
I do this not just for me but for all my fellow floxies whose lives are blighted by this and who live in fear and pain most days, please, please act to stop this suffering being perpetuated on others.
Sincerely
Debbi K.