The tale of my broken heart – Part 1

This is a story, not of a love that was won then lost, but of an unexpected and life changing series of events that literally broke my heart.

I'm 47 years old and have lived a pretty clean life of which I had always been fairly proud of. I've never smoked, never taken drugs, consume a couple of alcoholic drinks a year at most, eat a healthy diet and have been generally pretty active. There have been periods where I have been pretty darn fit going the gym 5 times a week, cycling and even did a bit of Kung Fu and Tai chi. I've been a keen motorcyclist for decades and even enjoyed a bit of adventure bike riding and travel which is in itself requires a reasonable level of fitness. I've enjoyed sailing, kayaking, swimming and even a bit of scuba, all things I want to do more of. So what I'm trying to paint is a picture of a relatively healthy guy who has lived clean and tried to be fairly active.

My reaction to Cipro 2 years ago kind of blew that out of the water unfortunately and the damage done to my muscles, connective tissues, joints etc… left me with really rather limited mobility for quite some time. It was only really in the early part of 2017 that I had increased my walking distances to be several kilometres although still at a rather slow pace. The kick in effect if all that was my fitness has plummeted and it really showed. The Cipro aged me, visually it can be seen in the rapid changes to my skin, the increased moles, age spots and wrinkles that literally appeared in weeks post Cipro. But also my muscles have shrunk drastically and I've lost considerable weight recently that may be both a good and bad thing I guess.

So to the point if this post, I had already been struggling through life somewhat since Cipro. I had a much more limited social life and had been unable to do a majority of the activities I enjoyed. But I could still drive for short trips and I could get out and do most day to day things that I needed to. In mid 2016 whilst the Cipro rollercoaster was in full effect I went through a continual cycle of weird health issues which seemed to have no rhyme nor reason. I was already under the care of a consultant rheumatologist for the musculoskeletal issues but I also noticed increased palpitations which I wasn't hugely concerned about because I've experience them for the last 15 years, the only difference was the increased frequency of them. So in September I visited my GP and raised my concerns and as expected he wasn't too worried. He had already been somewhat reluctant to believe the whole Cipro reaction scenario until he found the FDA reports and spoke to his colleagues from Germany, then he finally accepted it.

I was referred to Peterborough hospital for a cardiology appointment, something you would expect would come pretty quickly but no, 3 months later in December 2016 I get to see a Registrar (trainee consultant) who tbh wasn't particularly interested. Again the feeling I got was he suspected anxiety or stress as the culprit. Now by this point I already had a number of ECG done by the GP and they were all OK, so I do understand their lack of concern, plus I'm low risk, lifestyle wise at least. On the NHS heart disease calculator used by the doctors to calculate risk I am 3.1% risk of developing any heart related issues in the next 10 years, as my GP put it, my risk is minuscule. Anyway I told the registrar my story and he agreed to order an echocardiogram to be in the safe side.

Again there was a 3 month wait and I finally went to have the echocardiogram done in Peterborough on 25th March 2017. The test went smoothly and the chap doing the test was a researcher and very thorough. The end result of that was that my heart was in good shape and no obvious areas for concern at all. I left feeling some relief and confidence that anything I had been feeling was likely stress and of no concern as it would pass.

After this my partners mother booked a holiday for us all, sadly having lost her mother in January she wanted to do something nice to cheer everyone up after what had been a tough couple of years. So suddenly we are booked on a surprise holiday to Florida leaving on the 11th July! Obviously that was a fantastic surprise but I had concerns over my general fitness post Cipro, I knew I would struggle to walk around theme parks all day. I decided to try and increase my walking and at least get enough strength and stamina back to be able to slowly wander around and attempt some of the slower rides. We started planning the holiday, setting up all the Disney web accounts, booking fast Passes, booking meals etc… everything looked great.

Then 2 weeks later whilst driving home from Norwich I had a car drive almost on my bumper in the dark with their lights blinding me. For no reason it just sat there and didn't over take even when I slowed down. I gradually felt my adrenaline increase and heart rate start to shoot up and suddenly I had a tight clamping pain across my chest and I had to pull over. For a good 10 minutes I experienced a lot of discomfort, sweaty hands, lightheadedness. Again I didn't know what it was but it didn't feel like anxiety to me. Caroline took over the driving and got us home and I staggered off to a bed feeling quite unwell.

The next day I went to my GP and explained what had happened and once again an ECG was done that was completely normal. I was told to go home and try to relax and that nothing was physically wrong. So I left and based on that advice I continued with my goal of improving my fitness by doing longer walks and increasing the pace a little. The problem is I started to get some chest discomfort once I walked just a little bit faster. However my ECG was fine right? My blood tests were always fine, so it must just be lack of fitness or maybe the Cipro effects?

I started some light swimming but again developed some chest discomfort on exertion. I kept track of all these events in a diary and started to monitor my heart rate and blood pressure. As the next couple of weeks passed I ended up with multiple visits to my GP and the tests returned normal each time. Then I had another bad episode triggered by emotional stress after a minor incident with some kids and a football! This time I ended up very unwell, my blood pressure went up to over 150/100, my heart rate sitting was over 120 and I felt very sick. An ambulance was called and I was taken to the A&E department of the local hospital. So began what ended up being 8 nights in Hospital over a number of weeks, each time the ECG and blood results were completely normal.

During this time I had requested that my GP contact the cardiologist again and get me an urgent appointment. Urgent ended up being almost a month away and I had to push the hospital to see me 2 weeks later. They decided to order a CT Coronary Angiogram to rule out any underlying issue since it was looking very much like I had Angina. The problem was that it was still felt that nothing was wrong and the CT scan wouldn't be completed until after we were due to go to Florida. Of course I was now in a situation where I couldn't risk flying even though it was suspected nothing sinister was going on. So I decided to investigate private hospitals that could do the CT scan more quickly and found one, St Josephs hospital in Newport, Wales. They could do the scan in 2 days and get the ball rolling.

So I started on beta blockers, Bisolporol, which didn't totally agree with my Asthma unfortunately. Monday 12 June came around and Caroline drove us all the way to Wales so I could have the CT Angiogram done. I wasn't feeling on top form by any means, I had shortness of breath and a weird head. On arrival we went in and the hospital itself was quite nice as most private hospitals tend to be. I signed in and waited… About 15 minutes later I was called in to get changed into a gown ready for the scan. Then I waited again… Another 10 minutes or so passed I was called into the scanner room where a group of people were stood around, nurses, a doctor, the scanner operator and director of scanning. I was told to climb onto the scanner bed and lay down whilst they inserted a canular in my arm. That would be used for two reasons, firstly to inject additional beta blockers into the body to slow the heart rate, then a pump would be connected that would pump in a contrast dye just before the CT scan so that all the blood vessels would be highlighted and clearly visible.

The doctor injected me with one vile of beta blocker but the effect was negligible. Ideally your heart rate needs to be around 70 bpm or lower for a really clear scan and mine was still around 80. So he injected a second, then a third. They paused a while, it was now beating between about 73 and 77. So he injected a forth and then a fifth. By this time I wasn't feeling great but the show had to go on. So they decided to proceed. The first scan was to obtain the calcium scoring, used to identify the amount of calcium in the arteries, the second scan would produce the 3D image of my heart. As they prepared the second scan an automated voice told me to take a deep breath and hold, this was followed by the whir of the pump and gurgling of the dye as it entered the canular. A sudden flush of heat all over my body and a feeling like I'd wet myself followed! Then the CT scanner spun into action and it was over. We drove home, stopping briefly to grab a sandwich but I felt pretty awful. The beta blockers having taken their toll on my breathing.

The next day I contacted the cardiologist secretary as I didn't want to take the beta blocker anymore and needed an alternative. I couldn't get to talk to anyone and the following few days were spent chasing anyone who could prescribe me some medication. Although the report was sent to Peterborough by the private hospital after 2 days it took 4 days before I heard anything from the cardiologist at which point things changed quite dramatically.

The phone rang and I answered, the registrar was on the other end. Firstly he apologised for not answering or replying to any of my calls/messages I'd left for the previous 2 days, he'd apparently been quite busy. However he'd finally looked at the report and unfortunately it showed some quite worrying narrowings in the left major artery, so much so that they wanted to book me in for an Invasive Coronary Angiogram, the traditional way to get a highly detailed image of the heart and arteries. This is actually a medical procedure where a small tube is inserted into an artery on the wrist or groin and fed along until it reaches the heart. Once there a dye is injected and a series of x-rays are taken at all angles to get a detailed image. This again was urgent, but in NHS terms that's weeks away. Again, not until after the holiday we had planned! The problem was my Angina pains were becoming more frequent and less predictable. I had as mentioned multiple trips to hospital in the back of an Ambulance, hours and hours laying in beds in corridors, dozens of blood tests etc… I chased the appointment for the angiogram and stressed how my situation was becoming worse daily. It took a few words from Caroline to get them to jump into action when she asked them if they would take responsibility if I had a heart attack. Suddenly I was offered an appointment on the Friday, 4 days later. Half an hour later I get a call saying can you come Wednesday instead please, 2 days sooner.

So on the 21st June Caroline drove me to Peterborough for the Angiogram appointment. I was nervous but feeling so unwell I just wanted to know what was going on. After a short wait I was lead into the treatment area and prepared for the procedure. The cardiologist arrived and had a brief chat before I was taken into the theatre and final preparations were done. I climbed on to a bed, a bp cuff was placed on my left arm and a SpO2 sensor, my left arm was held out and the wrist shaved ready to have the canular inserted for the tube. Two large screens were positioned to the left which were hooked up to a mobile x-ray device which was attached to the ceiling on some sort of motorised crane like contraption. The cardiologist injected local anaesthetic into the wrist and after a short wait inserted the canular. She then started to push the tube into the artery quite quickly and forcefully. It wasn't a pleasant sensation and after a short period the x-ray machine started bobbing and moving taking various images. Then there was pain, and I suddenly felt incredibly nauseous, my head started to hurt, I felt dizzy. The cardiologist stopped and they checked my blood pressure which had suddenly dropped. They hurriedly put another canular in my left arm and a saline drip trying to boost the blood pressure which gradually increased. By this time the artery in my right arm had constricted and the cardiologist couldn't move the tube any further, the only options was to complete the angiogram by making another attempt via the groin. So they pulled out the tube from my arm, which hurt! Then proceeded to insert a canular in the groin and fed a new tube in all the way to my heart. The required images were taken and I was wheeled out, tired and in some pain. I had to lay down for an hour to give the groin artery (femoral) time to stop bleeding. This was followed by a nurse having to press down for 10 minutes hard on the incision. After a couple of hours the cardiologist appeared with results, looking rather down and a little upset. She pulled out a diagram of my heart and began to explain that the angiogram unfortunately confirmed the findings of the CT angiogram and there were 3 very serious narrowings in the left major artery, the main artery that delivers 2/3 of the blood to the heart. To make matters worse, the narrowings were positioned in really bad places, right were arteries divided and as such they could not be fixed with stents, I would need what was suspected to a triple heart bypass.

The doctor called Caroline in and explained the situation, a shock for her as well. I looked at Caroline and the emotions took over and we both got a bit watery eyed. I looked at my girl and all I could think of was our future, the things we had planned, the places we wanted to visit. I felt sad that she was going to have to deal with all of this alongside me which I knew was going to be tough and potentially a long road ahead even to get my health back. This on top of the fact I was already trying to recover from Cipro damage which had left me very unfit and weak.

The cardiologist explained that I would be referred to Papworth Hospital as an urgent request where I would be operated on and fixed. She hoped they would arrange an appointment pretty quickly due to the severity of the narrowings they had found. She then left and I lay on the bed contemplating what had just happened holding my girls hand never wanting to let it go. A short time passed and I was allowed to get up and get dressed. Additional medication was prescribed and I was allowed to leave and go home. It was a surreal experience, my mind was number oddly after the initial shock I felt calm and very matter of fact. Sure I had some anxiety about what this meant, I knew as much as these operations are fairly routine now, things can go wrong and I'd still have to wait for the appointment anyway.

The week after was slow and difficult, my angina pains continued to become more frequent and more sporadic catching me at all times and under all activities. As soon as I knew the name of my consultant at Papworth I contacted his secretary with a summary of what had been going on and how I was feeling. She replied back and later called me offering a private appointment. I explained again my situation and she suddenly told me to wait whilst she checked the booking systems. A few moments later she had tagged me on to the end of Mr Large's patient list for the following Monday. Unfortunately a day later I'm rushed into hospital again after a bad Angina episode and I'm kept in hospital for 2 days, however the hospital doctor was willing to let me out the next day as he didn't want me to miss my Papworth appointment with Mr Large.

Monday July 3rd 2017 arrives and I'm discharged from the Queen Elizabeth hospital, tired, feeling unwell but hopeful that I might get some direction regarding the operation, in particular timescales. Caroline picked me up and drove me to Papworth Hospital for the 3.20pm appointment. I didn't feel great all the way there, my chest was uncomfortable and my head wasn't in great place. We went in to the clinic and waited to be called in, however before that could happen I had to have a number of blood tests and a meeting with a cardiac nurse to go through my history. Linda, the nurse, took my details down covering existing and historic medical procedures and illnesses. She then explained the next steps and once we had finished took us back to wait to see Mr Large.

About 15 minutes passed and Mr Large popped out of his consulting room and called me in. He seemed a very nice man and I felt at ease, clearly years of experience and dealing with patients were a huge factor. We sat down and he proceeded to pull up the angiogram movies of my heart. This was the first time I'd seen them and again it was a pretty weird feeling knowing that was the muscle keeping me alive. He started to examine the video and point out the issues to me and it was clear from his expression and tone of voice that things were urgent. He looked at me and said, I think I need to make some calls immediately. Caroline was already feeling a bit off colour having listened to his explanation of my issues but we held hands and waited. Mr Large called his secretary and another person and between them they cancelled another operation and booked me in for a week later, the quickest he could manage. He told me the situation was pretty serious and needed fixing asap, without it I would die. I was told to go home and do nothing for a week! We left, again feeling numb and in my case still feeling unwell.

Caroline was amazing, she ran around after me and did everything she could to keep me comfortable and happy. But 2 days later I had another sporadic Angina attack and ended up in the back of an Ambulance on my way to the Queen Elizabeth once again. This time however things were different, my Angina was constant, the hospital now knew I actually had a heart condition and they were more cautious. The decision was made to keep me in hospital until the operation to make sure I made it! I was put in to a GTN infusion that drip fed me a constant supply of GTN which held of the majority of the angina pain.

GTN being pumped in through canular

I spent the next 2 days on the Medical Assessment Unit, followed by another 2 days in the Cardiac Care Unit (specialist cardiac ward)

My home in the Coronary Care Unit

I was transferred on the Sunday 9th July by ambulance to Papworth.

In the back of an ambulance trying to look happy but feeling pretty dire.

I felt some relief at reaching Papworth, I had finally reached the place my heart would be operated on, no more waiting, no more ambulance trips. The trip there hadn't been hugely comfortable in the back of a private ambulance for an hour or but it could have been worse. At least I was there and now just 2 days away from operation day.

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Two years have passed

It’s now two years since I took Ciprofloxacin for a suspected prostate infection, two years since my life was turned upside down, two years I’ve in many ways lost. Yet still, after two years I am not fixed, not back to my old self and sadly still suffering daily with issues. So I wanted to blog an update and also some thoughts and ramblings related to all this.

A couple of weeks ago I provided an update and that was largely focused on the repeated heart palpitations and pain episodes. Things have continued to go up and down although I do feel a little better in recent days. My GP has written to the Cardiologist to try and get me in more quickly to do a few more tests and I have a 24 hour ECG booked for 2nd June.

So what do I think is going on? The reality is it could be many things or indeed a combination of many things.

  1. The worse case scenario is that there is some underlying health condition related to the heart or arteries causing Angina like pains however I’m not really sure that’s the problem.
  2. Another plausible option is that I am having sporadic problems with the Vagus nerve and the heart is getting random electrical triggers caused by some completely unrelated benign episode elsewhere in the body. That is a real possibility as there are many accounts in the “Floxed” community of similar symptoms caused by the Vagus nerve.
  3. Another again contributing factor will be stress of which I have many and varied! There’s no doubt the anxiety caused by on-going health problems feeds into this causing a cycle of more anxiety and more stress.
  4. Floxing itself may well be a contributor and I tell you why, the muscle degradation and collagen depletion that I have experienced all over my body could quite easily have affected the heart, which is of course a hugely important muscle! Maybe the Cipro damage has simply weakened the heart as it has all of my other muscles.

Unlike the doctors, we are the only people who can monitor ourselves 24 hours a day 7 days a week. Now it is true that our perceptions can be affected by our emotions and worries so it’s important we are cautious in our judgements and also that we don’t let ourselves be skewed by stories of others symptoms or conditions. However it is important to take note of the mental and physical symptoms we get, try to come to some distinction about their origins and triggers and relay that information to our doctors.

Now many of us struggle in that last aspect, taking the information to our doctors. Often it is the case that the doctors fail to listen or take our evidence seriously. It’s clear many frown upon self diagnosis and individual research and I accept to some degree that it is too easy to latch on to one symptom then the next and self diagnose cancer or a tumour or some other horrendous condition. That being said, a doctor should also not rule those conditions out without thorough investigation. If I go to the doctor with frequent heart issues then you expect to have that investigated, and to be honest fairly quickly! Luckily my GP has been good in that respect although It does sometime feel like he would rather I went away and didn’t keep turning up with more issues!

And herein lies another problem with people with unexplained illnesses and conditions, the word “unexplained”. Why do we keep going back to our doctors? Because we don’t have a satisfactory explanation and treatment option. Often the doctor will focus on one aspect, perform some tests for that, the usual scenario is doing a full blood count because they are not sure what to do with you! If you do have specific symptoms then you might be referred to a specialist in whatever discipline seems appropriate. If after those tests and consultations the conclusion is… “inconclusive” then you are left no better off both physically and mentally, often left with no direction and no help, thrown back on the heap of despair!

In my case, having been “damaged” by a therapeutic drug, I am immediately outside the realms of normal doctor investigations. I don’t have an illness as such, what I have is lots of symptoms of lots of illnesses. Being “Floxed” is a particularly bad reaction to end up with because of the level of damage caused and what gets damaged… our cells. The cells and in particular the Mitochondria, are crucially important in the health of our bodily ecosystem. As a result of this, the most common issues post Floxing are generally “autoimmune” in nature as our bodies natural state of affairs has been knocked out of the ball park. The resulting self harm the immune system does to us can be devastating leaving many with long term damage to multiple systems in our bodies. The scary thing is that the damage can come along later, much later and not necessarily at the time of taking the medication. In my case I had an immediate reaction which appeared to improve over many months only to explode almost 6 months afterwards having taken Ibuprofen, a commonly documented trigger amongst the Floxed community.

So for me it’s two years into this battle and I don’t feel significantly improved if I’m honest. There are many symptoms which I now only get fleetingly and some which have gone altogether it seems but others have held on tight and won’t let go. I’m not as bad as many out there which I am thankful of but I am sufficiently bad that my life is no longer normal and there are many restrictions on what I can do now.

On a good day I can wander slowly and maybe cover 5km or so but not without pain and not without consequences after. On a bad day I have acute burning and pains in my knees, ankles and feet and even wandering 50m is hard. It’s the nature of this condition, it’s not constant and not predictable.

The damage done is subtle and hard to detect in scans and x-rays, requiring surgery, arthroscopy and biopsies to actually check the internal condition of joints, tendons and muscle fibres. Each of those procedures in itself carries additional risks and I have first hand accounts of long term additional pain and suffering after having some of these. So that leaves us in a difficult place where there are often “indications” that there may be something going on but it’s all a bit fuzzy in nature.

In my case I have many indications but no hard diagnosis:-

  1. I had a back MRI that showed 3 slipped discs, another MRI show a thickening of the tendons in my foot that could indicate tendonitis yet pre-Cipro I had no symptoms or indicators for these issues.
  2. I have re-occurring joint pains, joint weakness, burning in joints that could indicate arthritis yet the blood tests don’t indicate that (although my consultant believes I have arthritic symptoms now). Again prior to Cipro I never experienced any joint pains or stiffness at all.
  3. I have had significant worsening of my eyesight although the eye health itself is fine, but this is another well documented Floxing issue.
  4. Nerve issues come and go with tingling, pin prick sensations, muscle spasms, teeth numbness, twitching, skin burning and weakness. Again my nerve conduction tests did show some nerve damage but it wasn’t felt to be overly significant and may well improve… once again something I have never had prior to Cipro.
  5. Insomnia comes and goes but in the beginning it was horrendous!
  6. The collagen depletion has left me with foot atrophy and loss of padding around ankle joints, knees, my backside and elbows. It hurts to sit on a hard surface or walk barefoot on concrete or lean on a table with my arms because it feels like I’m putting weight on bone with nothing in between.
  7. My most debilitating issues are musculoskeletal, in combination with the weakened tendons and ligaments I have lost large amounts of muscle. I can actually feel the difference in the structure of my arms, legs and back, the lumpy muscle has been replaced with soft flesh as if the muscle simply vanished. I struggle carrying a single bag of shopping now as I can feel the weight go right through my arms, down my back, down my legs and into my feet and it hurts. I used to carry 3 or 4 bags in each hand! My mobility is massively reduced, leaving my ability to do things around the house, do my hobbies, travel, go out, live life! massively restricted.

I am staying positive and I still intend to get some or all of my life back but I realise the timescales are longer than I had hoped for. It may be a year, two or more before I can look back on this and feel like I am well again but that’s what I intend to do somehow.

Remember, don’t take Ciprofloxacin unless you really have no other choice!

 

 

Difficult week

The last week has been pretty tough having to deal with increasing health issues and my partners grandmothers funeral. Unfortunately it seems that I’m having some problems with my prostate again which is what I was given the Ciprofloxacin for almost 2 years ago. If that is the case then all the Ciprofloxacin damage, the ill health, the continued attempt to recover and impact on my life have all been for nothing. Having spent a large proportion of last Saturday emptying my bladder, well over 20 visits something is clearly not too happy. Added to that is the uncomfortable feeling when I sit and fairly constant discomfort below all seem to indicate a problem in that area once again. 

I’ll see an emergency gp this afternoon to get it checked out but I know something is wrong it’s just not clear what. If it’s an infection then all I have available is antibiotics but most of them don’t help with prostate issues and there’s no way I’ll take Ciprofloxacin or similar again, not unless it’s life or death. 

The other possibility is BPH or an enlarged prostate but why? I know age makes this more likely and I am heading towards that age where things start to have issues. Of course the Ciprofloxacin ADR has aged me, physically I feel 10 to 20 years older and struggle to do what most 60 years olds seem to be able to do.

I have another gp appointment already booked for Friday to discuss my recent MRI results and what options there are for treatments. That on top of running over the situation with the ADR symptoms and how I tackle improving from them. I had already decided that I need to get more structure and routine into doing light exercise in the hope it strengthens the muscles and connective tissues that have been depleted since Ciprofloxacin. My consultant is fairly adamant that I will be fine and it takes a lot to damage your body but as I know from other people’s stories, our bodies are very much weakened and those connective tissues are prone to damage. So I’ll be taking it easy and using the swimming as a supportive way to exercise with minimal impact along with walks a few times a week or as I feel able.

All I need is a break to get on with life for a bit! Every time I plan to start something like an exercise routine of sorts another health issue pops up or my FQ symptoms flare making it difficult to be mobile. It drives me nuts!

Update on MRI and EMG

So after months of waiting I saw my consultant last month who was as always very reassuring and understanding. After a run through of my situation she ordered an MRI on my lumber area, x rays and some EMG testing of the legs. Finally the dates for these came around and on Friday I had the MRI performed at Worthing Hospital, some 4 hours from home. The experience wasn’t terrible but it also wasn’t the most fun I’ve ever had! The scanner was in the back of a lorry trailer which gets moved around various hospitals as required. Unfortunately the radio in the trailer wasn’t working and since I had no CDs with me I had nothing to listen to whilst the 15 minute scan took place. Why do you need music you might ask? Well if you never had an MRI you won’t appreciate the noise the machine generates as it performs the various scans. A mixture of buzzing, banging, tapping and a constant thumping which eventually gets on your nerves! Even with ear plugs then the non working headphones on I could still hear the noise. Then there’s the size of the MRI tunnel you get rolled into, it’s pretty tight. I literally had a couple of inches max between my face and the surface of the scanner. Being that I’m not too keen on tight spaces I opted to keep my eyes shut during the entire scan! Once it was over I left and now have to wait a few weeks for the results.

Then Monday I once again took the 4 hour journey to Worthing for what was a half hour appointment. The EMG testing was used to test if my nerves were working as expected and if my muscles appeared to be working normally. Since I get frequent leg issues, burning, painful joints, muscle weakness etc.. then this would possibly help prove if there was any physical reason. The initial tests on the nerves involved having a number of electrode sensors stuck on various locations on the leg before an electric pulse was zapped into the leg further up. The time the pulse took to travel etc.. would indicate if the nerves had any issues. Once this was completed the muscles were then checked in one of the legs only. This was a slightly more uncomfortable test as a needle like probe was inserted through the skin into the muscles so that the could be listened to! The activity in the muscle was measured again providing an indication of possible issues. I did get some feeedback at the end of the EMG that confirmed I have some damage but the important factor is that it’s not “significant” damage and therefore he hopes in time it will improve.

I now wait a couple of weeks before going to see the consultant to go over the results. In the mean time I’m waiting on an appointment to see a cardiologist to check out the increased palpitations I have been getting. My life now revolves around hospitals and doctors!

UK Newspaper Article

Finally a UK paper has written a story about Fluoroquinolone Toxicity. Focused around a fellow UK floxie the story gives some background and details about the potential effects of these medications. Sadly the story is a bit wooly and vague and although I along with others were interviewed our stories were not included and so could not bolster the credibility of the story.

Unfairly comments were made insinuating that Jane, the floxed interviewee, had some financial compensation desire when the truth is she simply wanted to spread the word and hopefully stop others suffering as we all do now. It’s better than no story at all but in truth it could have offered a lot more information and more statistics.

So it may not be perfect but it’s a start.

http://www.dailymail.co.uk/health/article-3593515/Antibiotics-got-rid-chest-infection-Jane-says-destroyed-health.html

Hope at last!

After 5 very rough months and almost a year of cipro related issues I finally got to see a specialist who has given me something I had lost, hope.

The appointment went very well,  she went through the history, frequently talked about the cipro causing my issues and was very realistic about the whole situation. She did a brief examination including my gout which she confirmed looked pretty typical for acute gout.

So finally there’s a plan, something I was lacking and something that gives direction. She thinks that in time I’ll get much better, she doesnt believe I’m about to kick the bucket or that I’ll get worse but she can’t guarantee that of course. She wants me to have a bunch of tests checking things like autoimmune profile, RA, liver and kidney function etc. .

The initial plan is to take a round of  Colchicine to try and rid the gout from my foot. Then get the tests done so I can start a “baby dose” of Prednisolone which she hopes might produce some relief whilst my body tries to deal with the problems. I know there’s mixed feelings about Prednisolone  but if it stabilises my inflamed muscles, joints etc.. and allows a better standard of life then it is worth trying.

She will review the various tests when they are back and in about 6 weeks we will catch up to see if the Prednisolone has helped at all. So I feel a bit more positive and just having a plan of sorts is a big mental boost.

Gout still not gone :(

So my foot is in agony still.. I’m not even sure if it’s 4 or 5 weeks now. I can’t walk on it, another weekend I’m going to be stuck in bed. I can’t stand this anymore… I’ve been trying natural paths, but nothing is helping and this 24/7 pain is just taking away what little life I had left after cipro. My joints in general are stiff and that was already a concern but now I worry about long term high uric acid levels and gout. My foot and toe joints will get damaged if I can’t stop this swelling and my kidneys and other organs will suffer if I can’t get this under control.

I’ve no choice but to look at medication, I wish there was another option. I was prescribed colchicine to deal with the inflamed joints so I’m going to try it. I’m not keen on the idea of long term or life long meds though.. that with the potential for nasty ADRs with them worries me. I at least need this attack reduced or gone.

So I’m sadly waving a white flag, my body couldn’t fight this alone, probably due to being floxed and not at full strength already. I just hope these meds will work without issues, I need this vice like pain gone.

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