My Story

So what happened that made me want to write a blog? It started in 2012 when I developed a suspected urinary track infection (UTI). I visited my local GP who prescribed a course of antibiotics. A couple of weeks passed, the UTI subsided only to return a couple of weeks later. After 3 UTI’s I had already done a bunch of research and suspected it could be a condition called Prostatitis. The problem was that I was in the middle of moving to Norfolk from Reading so I had been seeing various GP’s. I suggested Prostatitis and it wasn’t entirely excluded but since it is a condition that is very difficult to diagnose it was side lined. Over the next 16 months I had another 12 UTI’s, some of which I passed blood, each time I was given a bunch of antibitotics, each time the symptoms subsided. Finally I was referred to a consultant and had a endoscopy performed (very uncomfortable) that found no obvious issues in my bladder but did leave with with on going pains to this day. After that I was sent to have my colon checked and a colonoscopy was performed, again no obvious signs of any issues. I had 3 CT scans done over that time, only some signs of Diverticular disease were found as expected at my age on a western diet.

Finally I was referred to another Urologist in May 2015 and 18 months after I suggested it, he agreed it was likely I had Prostatitis! If they had listened to me before I could have avoided probably a dozen doses of antibiotics which no doubt screwed up my internal biodome. His treatment was to get me to take another stronger antibiotic called Ciprofloxacin, a Fluoroquinolone  (FQ) antibiotic,  for 6 weeks. This was apparently the usual approach and the drugs were much better at dealing with deep rooted infections. What he didn’t tell me was what could go wrong, what side effects I could expect or worse case scenario the long term effects.

As with most people I was desperate after so long dealing with the UTI problems and didn’t really digest the leaflet that came with the pills. I was pretty reluctant to take them, the idea of yet more pills, 6 weeks worth this time, filled me with dread, but what choice was there and the consultant had advised and issued them to me. Just 4 days into the medication I was feeling unwell, I had some muscle pains, nausea, headache and sleeping difficulty. I persevered as I wanted the UTI issue gone but by day 8 I was a wreck, my elbow was in agony, my legs and arms felt weak, my muscles hurt, I couldn’t sleep at all, nausea was coming in waves, my head hurt so I stopped taking them.

About 2 weeks later things had settled down and I felt generally better. What followed then was 6 months of pretty reasonable health, the odd aches, the odd pains and I still had sleep issues but I put that down to stress. During that time I walked in Scotland, rode my motorcycle miles, drove for hours in the car many times, did kayaking, sailing, swimming and generally was fairly active. Then out of the blue I developed a cold at the start of December 2015 and felt the usual pains including quite a bad headache. I rarely used Ibuprofen but this time I decided that I needed something as the paracetamol was not helping so I took one tablet and went to bed.

I woke up the next morning, headache still present and worse, my left calf muscle and leg were painful and tight. I scratched my head, tried to think if I had done anything physical the day before but no, nothing. So I ignored it and figured it would settle down. I carried on getting ready for Christmas which included hobbling around town getting gifts etc… I had a couple of weird “moments” during this time where I suddenly lost all strength and felt twice as heavy as normal. So much so that I ended up having to sit down for a while to recover. Again, I put it down to stress, lack of sleep and general fatigue.

So over Christmas the leg did not improve, insomnia was getting worse and I was feeling generally tired. I carried on as normal, even did a few walks although I had to hobble along a bit. Then by mid January and still no improvement I decided to go to the Doctor as I was concerned about the length of the pain and risk with clots. In the mean time I had started researching on line and looking for links to events that had happened to me over the previous months. Then I found it, a scenario that fitted my predicament completely.

The likely cause was adverse reactions to the Ciprofloxacin taken 6 months before but re-triggered by me taking the Ibuprofen, a drug reported by many to kick of a relapse of symptoms. At first I found it difficult to believe something I took that long ago could still cause me problems until I started to research the drugs themselves, how they work and the plethora of reports of ADRs including death and permanent nerve damage! The drug is part of the Fluoroquinolone family of drugs which are generally synthetic in nature and work by stopping DNA from replicating. They also contain Flourine, a known toxin and the more I’ve read about that the more I’m blown away that we use it anywhere.

My symptoms rapidly exploded not long after this and I developed a whole host of problems including burning skin sensations all over my body, muscle tightness, cramping, pain in joints and clicking joints all over, pins and needles in toes and fingers, pain behind eyes, digestive issues such as burning gut, headache, nausea, fatigue, muscle weakness, terrible insomnia and more. I checked on line and found dozens of blogs with almost identical stories, then support groups on social media such as Facebook, again with thousands of registered people going through the same. So many people have been left with debilitating ADRs that have left them housebound, unable to work and often their lives are permanently changed. I also found sites like Floxiehope which did at least tell stories of those who made it through to the other side.

So here I am, February 18th 2016, 2.5 months since my relapse if that’s the best way to describe it. What are my current symptoms?

  • My left leg is still the same and my right leg is also suffering now
  • My skin has aged with wrinkles and marks that have appeared
  • My left eye is still dry and aching and has the odd sharp pain
  • I get periodic burning skin issues
  • Occasional pins and needles or pain in fingers or toes
  • Insomnia is terrible and sleep is still nearly impossible
  • My joints (I mean all of them) click and feel loose
  • My limbs get tired really quickly from doing light work
  • Stress, Anxiety and Depression are big issues with this
  • I’ve lost 12Ib in weight, some likely to diet changes and some due to muscle loss as I’ve noticeably lost muscle and padding.

So what am I doing to try to get better?

I’ve cut out all processed foods and hardly eat meat except a small amount of chicken and tuna. Eating lots of fruits and veggies and drinking lots of water. I’m also taking a heap of supplements, in particular:

  • Magnesium
  • Omega 3 fish oil
  • Vitamin C
  • Multi-vitamin with A, B, D and E vitamins along with other useful stuff (Wellman Original) I’m considering getting the Immunace ones next time as they seem to have higher doses of specific vitamins that might be useful.

I’m trying to carry on as near to normal as I can, working from home, getting out for short walks and a bit of fresh air when I can or feel able. I even managed a trip to see Star Wars at the cinema! But some days I simply can’t focus on anything or my leg or joints might be particularly painful or as today, my eye is sore and blury and I’m fatigued.

For the foreseeable future my life has changed for the worse sadly.  I can’t ride a motorcycle at the moment, I can’t run or risk putting pressure on the tendons and causing a rupture in my Achilles. I can drive short distances but my arms and legs get tired and I may have to swap to an automatic car for a while to try and reduce that. Trips I had been hoping to go on are now unlikely this year so I watch from afar as friends plan those holding on to the weakest hope I might feel better in a few months. Life carries on all around me and I do feel like I’m a bystander to much of it.

Every day has it challenges, whether they are physical or mental in nature. I’m lucky to have my partner Caroline supporting me through this, she tries to keep me focused on the goal of getting better when sometimes I feel like everything is falling apart.

You can find good support groups on social media, blogs online and google will no doubt bring up a million links but beware of reading the horror stories. I have to remind myself that thousands use these drugs and likely have ADRs but get better so you never hear about them. Many more get ill, join the groups then vanish when they are well again. Most of those left are either going through it now or have had long term damage done or other medical conditions either as a result of the FQ drugs or because they had them already. It’s very easy to get overwhelmed with all the possible outcomes.

Don’t expect your GP to be forthcoming with help either. Most people find their GP’s dismissive about the chances of this being a reaction to the FQ medication, especially those like myself with delayed onset ADRs. Even though there are thousands of people documenting the same symptoms having taken the same drugs it seems only a few doctors have looked outside the box, outside their medical checklists and really read into the reports and studies out there already. And even if you are lucky enough to get your GP to acknowledge that the FQ drug was the likely source there are no direct tests or treatments for the damage done which is sadly at the cellular level. You have to hope your body can fix itself with the right diet and time.

So here I am, in the middle of my own personal nightmare, waiting to see my GP for the second time to discuss my lastest blood tests and my ongoing symptoms. He wasn’t particularly responsive to the whole ADR diagnosis on my last visit and was reluctant to view any research I had done. The reality is you have to research and weed out the junk. You have to try to find out what is going on with yourself because they simply don’t have the time. We get a 10 minute appointment and if I’m lucky that would be every 3 to 4 weeks, what can you really diagnose in that amount of time?

This blog will be a way for me to continue to track my health and dump my feelings as I walk along this road of recovery.

 

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5 thoughts on “My Story

  1. Hey Chris,

    I finally had a chance to read your story. I wanted to read it earlier but as you know, days of clarity are few and far between. Anyway, I’m all caught up on your situation (read all your posts too!) and there’s some things I wanted to share with you.

    First of all, I’m sorry that this has happened to you. It’s a painful experience, one that I don’t wish on anybody, and it really bothers me that we have to endure this kind of pain on a daily basis. For what? Because we went to the doctor for treatment?

    Circumstances aside, our stories have a lot in common. For example, I too had an endoscopy and colonoscopy performed (I agree, they are uncomfortable as hell) and a bunch of imaging tests like MRI, ultrasound and x-rays. However, these procedures were done on me post-antibiotics. The reason I had them done is because I didn’t believe an antibiotic could cause me all this pain. I was convinced that I had contracted some sort of disease or that I had cancer. All results came back negative and I began to confront the antibiotics head on (something I did not want to confront out of fear) only to find out that they in fact, are the culprit.

    In your case, as it happens all too often, they (doctors) chose not to listen to your initial suggestions and sent you on a carousel of antibiotics. Then, to make matters worse, they hand you Cipro and it causes your ADR. No warning about possible side-effects either. I’m willing to bet that this doctor had knowledge of the things that could go wrong but chose not to disclose it to you, just as was done to me. Sadly, it’s profits over healthcare. Welcome to 21st century medicine. It’s wrong on so many levels.

    Here’s where our stories connect. I too consumed Ibuprofen for a headache the night ALL my symptoms began. Seeing as I didn’t experience any symptoms prior to the Ibuprofen, I am now convinced that the trigger for these delayed reactions (mine was 3 months delayed) is Ibuprofen itself. Your story seems to confirm this theory. There must be some sort of interaction with the antibiotic which causes this plethora of symptoms.

    You mention having moments where you felt you lost all strength, heavy feeling, tiredness, etc. I experienced the very same feelings in the days and weeks after the onset of symptoms. This followed a period of incredible pain (inflammation), tightness all over my body, huge weight loss, basically everything you described. Then the neurological symptoms started up and the rest as they say, is history.

    Re: your life and the new reality. This is something that I have been grappling with too. Most people have no clue how difficult it is to live with this condition but man, what alternative do we have? We have to KEEP GOING until we see better days. We have to trust that our bodies ARE capable of repairing themselves and be incredibly patient with ourselves in order for this to take place. Last year, I felt like throwing in the towel but my New Year’s resolution was to fight on until I get better.

    Like you, I love travelling. I didn’t include this in my recovery story but I was fully booked to travel through the continent of Africa, Kenya down to South Africa. I had 7 months left until my departure when, THIS happened. I was devastated. I had spent the past year and a half working hard towards this trip. I saved up every penny I could to make this dream a reality. I was so close. In the months ahead I was trying to convince myself that I could still embark on this adventure. I didn’t want to give up on something I had been looking forward to for so long. Alas, there came a time when a decision had to be made and it simply wasn’t possible due to my deteriorating condition. I cancelled my plans, lost thousands of dollars in airline tickets (I didn’t take out insurance) and wanted to end it all. Then I got thinking, what if someday I can make this trip happen? What if one day, I am recovered and able to enjoy my life again? Isn’t that day worth fighting for? So I made myself this pledge and I hope that you can do the same. That one day, you are well enough to enjoy your motorcycle rides, hikes, trips, all that good stuff! I’m going to fight this thing for as long as I can and I hope you will too.

    My newest motto is:
    Trust The Process.

    One final thing, in one of your recent posts you mention feeling particularly bad in the mornings and evenings. The same holds true for me. I have these strange occurrences in the morning after the lack of sleep which make me want to stay in bed and not get up. It’s a kind of dizzying effect. A lethargy of sorts. In the evenings, my batteries are completely drained. Same sort of tiredness and lethargy. I believe this is occurring as a result of our immune system being severely compromised. The immune system is located primarily in the gut and we (now) know the kind of damage antibiotics do to our guts. Immune systems become weaker in the mornings and evenings, and it is this reason, I believe, that we feel so awful in the mornings and evenings.

    Anyway, let’s just keep the battle going.
    One day, we will be stand on top again.

    All the best to you and your partner in crime (Caroline),
    -Lukasz

    • Hi mate, thanks for taking the time to read my story and blog. It’s clear that there are many similarities in our stories and the resulting side effects. I have learnt much in the time I have dealt with this and one of the main things is the suffering and anxiety we all deal with as part of this fight. Day to day we deal with different issues, sometimes a new one, sometimes a reoccurring one. The way this drains us mentally and physically is difficult to describe. Some days you feel progress and can actually smile, walk a bit, go out and feel the air and sun on your face then 2 days later you collapse in pain or depression kicks in. I wouldn’t wish this on my worst enemy (not that I have any!)

      I am sorry to hear about your cancelled trip, it’s heart breaking to have those things hanging in front of you only to realise now you can’t do them.

      I’ve a big list of places to visit, I’ve route 66 to ride or at least drive! I had planned for 2016 to be a year of change, physical fitness, new hobbies and in some ways it is a year of change just not what I had planned. My entire list of things to do in 2016 are on hold as they all require me to be fit and healthy.

      But like you I’m determined to get better and ride the roads again. I just have to hold on to that when my body turns against me and I have a bad spell.

      It would be good to keep in touch, let me know if you want to exchange email address or social media etc. Keep plugging mate, we will get there!

      • Indeed, there is so much information out there that it sometimes becomes overwhelming. On one hand, it’s good to be informed, but on the other hand, you begin to feel like this is taking over your life completely. I think we need to find a balance between educating ourselves on this condition and making the best of our life.

        You’re right. Just when you thought you dealt with every symptom under the sun, a new one comes along and makes your life miserable. This is very taxing. To be honest with you, I have not felt any joy in over a year now. At best, I have felt neutral. As far as happiness is concerned, it’s been suppressed by this damn drug.

        As far as the trip is concerned, I am holding out hope that one day in the future I can undertake this or another trip but at the present moment I have no time frame. Like you, I used to plan my life in advance and since this happened, all I do is try to get from day to day. Like you said, everything is on hold for an indefinite period of time. What a goal-destroyer this thing is, eh?

        Anyway, I hope you continue to make good strides in your recovery and are able to accomplish your goals in the same manner you would before the antibiotics.

        Starting in March, I am going to throw everything I got at this and see how far it takes me. I have new supplements I want to try out and after taking a month off from the gym, I plan to do a bit of lifting/cardio/sauna. I also want to experiment with IV therapy to see if it helps. I will keep you in the loop regarding any progress. I’m not on facebook but you can reach me by e-mail.

        E-mail address is:
        changestartswithone@hotmail.com

        Take care for now,
        -Lukasz

  2. I have the same issues with sleep. The insomnia / abrupt wake-up does slightly improve over time though. At least, it did for me. Try Epsom Salt Baths right before bed.

    Btw… I know reading comprehension is difficult, but you should check out these articles on the Mercola.com website. Lots of useful info for us regarding gut restoration.

    Links:

    1) http://articles.mercola.com/sites/articles/archive/2013/01/02/digestive-system-gut-flora.aspx

    2) http://articles.mercola.com/sites/articles/archive/2012/03/18/mcbride-and-barringer-interview.aspx

    3) http://articles.mercola.com/sites/articles/archive/2011/07/31/dr-natasha-campbell-mcbride-on-gaps-nutritional-program.aspx

    4) http://www.gapsdiet.com/

    ———————————-

    Story at-a-glance

    Your gut serves as your second brain, and even produces more serotonin—known to have a beneficial influence on your mood—than your brain does. It is also home to countless bacteria, both good and bad. These bacteria outnumber the cells in your body by at least 10 to one, and maintaining the ideal balance of good and bad bacteria forms the foundation for good health—physical, mental and emotional.

    Most disease originates in your digestive system. This includes both physical and mental disease. Once you heal and seal your gut lining, and make your digestive system work properly again, disease symptoms will typically resolve.

    The GAPS protocol is designed to restore the integrity of your gut lining by providing your body with the necessary building blocks needed for healthy enterocyte reproduction, and restoring balance to your gut flora. Basic dietary details are included.

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