Fluoroquinolone Toxicity Syndrome

Hi Clix

I can't tell you how sorry I am to find you here and suffering so badly, with what is clear to me, quite a severe adverse reaction to the Cipro.

Your story is very common. I have heard of Cipro being used often to treat Prostatitis and it doesn't work for this.

It's good that you've managed to report your ADRs on the Yellow Card Scheme - It's hard work when you've got brain fog and everything else.

Chronic Fatigue Syndrome has been linked with and mistaken for FQT very often. I would go so far as to say that you haven't got CFS but it's the FQ poisoning, though I'm no medic. Having said that, the majority of doctors don't recognise FQ Toxicity syndrome. They can't believe that one could have so many side effects from the FQ, as many are listed as 'rare' or 'very rare'.....which they are not! Nor can they understand that FQs have an ongoing reaction, cascading throughout the body. It's systemic and the docs think that after a few months the antibiotic will be out of your system; wrong, it's action becomes a chain of reactions. Also because ADRs can be delayed, not manifesting for maybe months after stopping the FQs, the patients and doctors, don't make the connection and therefore don't realise they've been 'Floxed'. We all join up the dots in the end...us who have taken these sledgehammer antibiotics, not the doctors.

Many Floxed people end up doing the rounds of all the various health departments, searching for concrete evidence of something and usually to no avail. I had an ultrasound of my Achilles and feet and it did show abnormalities which couldn't be explained. The Consultant Radiologist asked me whether I went running regularly, or a keen walker, as this would explain the things he could see that were wrong. I have never gone running or been a keen walker and told him it had to be the Levofloxacin. He didn't argue at all; I explained the action the drug has on collagen and he asked why it was being prescribed so inappropriately and was appalled at the ADRs.

You need some hard facts and information about FQs to,take to your GP and so I suggest that you try to follow links to info. Start with Floxie Hope (the link is above in the Moderator's post) Lisa explains the action of FQs very well and makes it easier to understand but she also backs up what she says with links to Scientific papers etc. You need to get your GP to understand that all your symptoms are ADRs. So print off stuff to leave with him but first try to explain it yourself. Take all the time you need too and don't worry if your appt overruns, is my advice. I have met hundreds of FQT sufferers over the last two years and I know of thousands. You can tell your GP that ther are Class Action Lawsuits going on in the U.S. but don't let him think you are going to sue. Also there have been a few dozen items on the major US TV News channels over the last few months. Each time a story ran, the stations were inundated with people getting in touch because they had been poisoned too. FQs have two Black Box warnings on the labels in the U.S. and this is what happens before a drug is eventually taken off the market.

Sorry I have waffled a bit here.

Rest and sleep when you have to. Get some Epsome Salts to bathe in and take Magnesium too.

Let us know how you go on and please ask if there's anything you want to know and I'll try to help if I can.

Take care...oh and btw you will get better, though it may take a while.

Carol

 

So sorry you have been poisoned too, I was floxed April this yr and feel like I'm in a living hell. This drug is so dangerously toxic and should not be prescribed. As carol said floxie hope is a great site for support and information. I too have the dizzy lightheadedness, I also have widespread tendon pain and creaking, my knees are agony and I find it hard to walk, I have developed tmj and tinnitus aswel as digestive problems and cns damage. I have been unable to work for 6 weeks now. Please do keep in touch and look on floxie hope.

Hi Ploddingon

Thank you so much for the prompt reply and information. So reassuing to know that I am not alone and there is someone who agrees with me and that it's not just some figure of my imagination. 

I will have a read of the website you mentioned to gather some proper information on FQT. 

Question if by some miracle my gp does take into account what I have to say. What then? Everyone talks about the side effects of cipro etc but i havent really read of any get well stories and what they did? 

Since this whole saga recently I have been complaining of lower back pain and testicular ache so I had another ultrasound done of the groin area about 2 weeks ago. I expect everything is ok otherwise I would have heard from my gp. I suspect this is epididymitis. 

I also think my ibs is back with avengance after a few years of restbite as I am unable to retain any food. 

I was doing so well in the last year after recovering from the shoulder injury. Everything has just gone to shi*

I'm not sure  I can keep up work for much longer in this current state. I am at breaking point at the moment because I am literally kicking myself for listening to the consultant and trusting him. Usually I look into things before committing but I guess with everything in the last 6 months I was desperate to get better. Sorry for the rant. 

I too regret not looking into what I was taking, but we trust our Drs and never even in a horror story could I imagine that a drug like this could exist. I have never suffered from digestive problems but since being floxed I can't retain food either and am not digesting it. We can only hope that with time healing will come. I am on Magnesium and other supplements but not sure they are helping.

Hi Clix

You're welcome :-)

No you aren't alone - there are hundreds and thousands of us, all over the world (I've talked to FQT victims from many countries) and you're not imagining it, or going crazy either, though you probably feel you are.

It's a massive shock in so many ways, to realise what's happened. I was in shock and disbelief (apart from the severe pain and other weird symptoms, which would appear daily) when I joined up the dots on about the 5th day on Levofloxacin. Even then I continued taking it, as I couldn't believe it was true. My GP was visiting me at home because I was so unwell and I couldn't walk and she was met with a hysterical and frightened woman in bed, surrounded by iPad and loads of printed material about FQs and completely freaking out. Neither of us knew what to do but at least she didn't doubt for a minute what was happening to me and I have had her total ongoing support.

I never took or did anything specific to help my recovery, apart making a huge mistake and going to a Physio for a few weeks, once I could walk a bit, after 5-6 months in bed.bI had tried to explain to the Physio that this tendon damage wasn't like a sports injury and that the collagen was breaking down all over the tendon and it's structure had changed; it was a case of whether the collagen could repair faster than it was breaking down and also that the strands of new collagen would grow back higgledy piggledy and not in an ordered way, as before. Long story short, I was given different strengths of resistance bands to use, over a period of time but it was a disaster and I made everything worse, plus there is always a risk of the tendons rupturing. I was better left to my own devices and moving a little but rearing a lot. 

In the end it was time and listening to my own body that helped me and reading stories of people recovering too. There are many horror stories out there and it's easy to start to think you will never get better; then the panic sets in. You will find stories of recovery on Floxie Hope :-) Lisa Bloomquist (Floxie Hope) has an ebook by the same name, on Amazon and it is very inexpensive, easy to read, short and full of hope. I recommend it.

Many people say they are helped by taking Magnesium and also Glutathione IV (I think it's spelt like that) seems to be gaining favour in the US but I have no idea how one would go about getting that treatment here in the UK.

You need to try and eat healthy but there are some who say that Soy products and Dairy should be avoided. I lost my appetite completely and also much weight and two years on I'm still very underweight with muscle wasting too (I am still about 70/80% better though) You may find that you can't tolerate certain foods that you normally have no problem with and digestive problems are common. In your research you will discover that every system in our bodies can be affected, ranging from physical to neurological.

Look for The Flox Report; it is worth reading.

We all feel stupid for taking the poison and me especially, for continuing to take it for a further 4 days, after I began to learn I had a big problem with it but still couldn't believe that an antibiotic could do this. We are not to blame though, as we put our trust in the health professionals who prescribed it for us. My GP had been advised to prescribe it to me by a Specialist Nurse. Unfortunately, they don't know what they should about FQs ie that they are never supposed to be used as a first line defence. There is even a UK government directive to this effect! 

If you can make your GP understand what is happening to you (and I'm sure you can with the back up info) then she should be able to sign you off work, because it sounds like you are getting to the point, as you say, when you feel you can't continue working. Many FQT victims have to take time off. I wasn't working, so didn't have that added stress. 

You need to rest and try and avoid getting over stressed, even though anxiety is another ADR.

Btw, if on Floxie Hope you can find a ' Letter for a Doctor'( It's been written for FQT sufferers to take to their Docs) it's worth printing off, also a letter from a Doctor to Michelle Obama, explaining about FQs. I have these if you can't access them, so let me know and I'll search for them and send them to you, if necessary. 

Don't beat yourself up for taking the Cipro. You should never have been prescribed it and from now on you'll look everything up first but when we are very ill, we rely on our medics to do the right thing and not to harm us further.

Rant away as much as you want.

Carol

 

Hi Gayle

It's good to hear from you again and my heart goes out to you, as I can imagine how bad you feel. It is hell but you just have to keep going through it, with the belief that you will get better.....eventually.

I've lost two years of my life to this and I'm still not out of the woods yet. Trying to explain to people becomes a nightmare too and some friends have virtually given up on me now, as I've had to refuse so many social occasions but I haven't the energy to go anywhere or do anything really. Even though I can now walk a bit, my Achilles and all the original tenons affected still ache and also my bones and muscles too. I haven't been able to wear a normal pair of shoes or snappy little boots for over two years now. I live in slippers and can only wear wide, soft suede boots to go outdoors in...not great in the sunshine and heat.

I still have insomnia and I forget what it's like to sleep for more than a couple of hours at a time. If I get 3 straight hours, I think it's a good night! I have given up even trying to sleep at night now and tend to drop off as it gets light. I fall asleep all the time during the day though.

I'm depressing myself now!

At least we can talk to each other here. I've given up on the FB groups; they were useful at first for info but they are toxic now and best avoided.

We are in this together. Hang on in there Gayle.

Carol

I think the letter to give a doc is titled 'Dear Doctor'.

Perhaps I should list all of my ADRs here too, then we could direct disbelieving GPs and other docs, to these discussions. After all, they use the site and direct patients to the site for info. Maybe it's time they looked at the forums also......

Sorry for all these additions...wish we could edit posts!!!!

A big thing to get across to docs et al, is that just because a side effect is listed as 'rare', or 'very rare', it doesn't mean we haven't got it and why should it be assumed that we can't have more than one side effect (I use the words in the Patient info leaflets)? Many of our ADRs are actually listed as possible reactions in the packet inserts but they are written in such a tiny font and without highlighting the most common ones, they are easy to miss.

Many of us (I was) were given steroids or NSAIDs concurrently and both are listed as contraindications with FQs

I must stop rambling....I get angry!

Carol

Hi Ploddingon

Apologies fo rthe slight delayi n replying but my computer was playing up and after the last reply I didnt have any energy so fell asleep. I will have to read over what you have said in the thread a couple of times for me to absorb it in. 

Today is a really bad day unfortunatley. My stomach has been really bad since this morning so had to take an immodium tablet. Feeling very unsettled and was hyperventialting earlier so I checked my blood pressure which was 114/72 which I read is within the normal range but usually im a little higher. 

So other than taking magnesium is there anything else I should do in the meantime? 

Based on my symotoms what is the best course of action in getting better. I know  there is no magic bullet as everyone has different ADR's i.e. you had achilies tendon. Mine is more hormone and neurological based I guess. 

If you have that letter to hand you mentioned I would be greatful. 

Thanks

Clix

Thankyou for your reply Carol, it is a lonely dark place being floxed, it is hard for me to believe it has really happened let alone anyone else. My Dr believes me about the tendon and joint pain but doesn't want to acknowledge the other adrs, like you I am already of slight build and can't afford to lose the weight I am. My head today has been somewhat clearer at times but I have a new adr of my heart racing for no reason. We need to support each other and get the word out there as they have started to in America.

Clix - Please don't apologise for not replying sooner. I only have short bursts of energy, when I feel I can do something.....and that's usually doing something on my iPad, whilst lying on my bed. Most of the time I haven't the energy to do even this. Maybe that's why I write such long posts (sorry) to catch the wave, whilst it's here; also I keep thinking of more things to tell you about and it all just pours out in a bit of a jumble I'm afraid.

I will find the letter and anything else that could be useful to show your GP and send them to you as a private message, or if you want to message me your email address, I'll send them that way. As soon as I find the letter, I'll send that alone though, as all my notes and research is all over the place and it might take me a while to sort.

Whilst the major ADRs for me were all the tendons on both legs and feet, from the knees down and the pain was so massive (I am no stranger to pain either), it was impossible to be aware of anything else for a long time. My legs felt like huge, dead tree trunks but were throbbing and on fire at the same time..so weird and my feet and I couldn't move either. They looked no different from normal. It wasn't till day 14 that I got effective pain relief ie liquid morphine; there was a Bank Holiday and a Dr who didn't really know me and didn't understand the amount of pain I was in..that was the worst 4 days ever.

Anyway, I digress again. On the 3rd day of Levo, I felt weak, breathless and very lightheaded, plus my legs were aching and I began to get cramp every few minutes, in my calves, toes, thighs, hands and even in my side. This was continuous. The 4th day I had the most terrible backache and although I have a bad back anyway, this was a different pain. That night I began to cry and didn't stop for 3 days and nights. I had no idea why I was crying but it was uncontrollable 24/7 and I just couldn't stop.

Every day something new happened and the general pains started to become more specific. I also started getting peripheral neuropathy in my feet, with strange tingling and pricking sensations, plus two numb toes, which still are.

I also had about 3 panic attacks during the next few months; I've never experienced these before.

My concentration went to zilch and I still can't focus well. I can't think of the word I need often and forget what someone has just told me. My brain feels like it's fine to mush really.

I didn't sleep, except for the odd hour in the day for about 3 months but thankfully even though I still am awake all night, I do get a few hours in the early hours or in the day but I'm permanently exhausted. It is true Fatigue that we are experiencing and not just feeling tired, like ether you or Gayle said, there's no feeling of being refreshed after any sleep.

I lost my voice for 3 months and the ENT Specialist said that my vocal chords were very dry. I had disastrous consultations with him because he thought I was mad for thinking it was due to the FQs, though it was. They dry out all mucus membranes. Eventually, the hoarseness went and I got my voice back but I had been scared that it would never return.

I was photosensitive and still am; I couldn't bear the light at all and often the iPad screen is too bright and I have it turned low anyway. When I last had my eyes tested 18 months ago, the optometrist asked me if I squinted a lot in the light, because my eyelids have suddenly drooped and now cover part of my pupil. This is also due to FQs, with squinting but also losing muscle tone. I need surgery to lift them but am too scared, so have done nothing yet.

My body thermostat has broken and I was choked to the bone for the first 6 months. All through the hot summer of 2013, I had the heating on and hot water bottles. Now I am still often very cold but can suddenly become really hot (not menapausal flushes) and permanently feel I'm running a low level fever.

I didn't mean to write all this but I suppose that I've tended to dwell on the more musculoskeletal ways in which I was affected, because the pain was so severe I guess and all consuming and it's only in the last year that I've been more aware of my other ADRs.

I wish I could give you an answer and tell you what to do to help yourself recover and I'm frustrated that I can't. A good healthy diet, with lots of fruit and Veg. Some people go completely organic and avoid meat (it contains hormones and possible Quinolones). You could cut out Gluten. Take Multivitamins, especially Vitamin C....I seem to remember reading early on that it can block the FQ from settling in the GABA receptors. There is strong evidence to show the FQs have a detrimental effect on our Mitochondria and FQs cross the blood-brain barrier. Vitamin D might help the Fatigue. In fact I would ask your GP to test you for mineral and vitamin deficiencies.

You will find articles on Floxie Hope, with explanations about the chemo type reaction of an FQ and also some suggestions of things you might be able to try. Avoid anything with Fluoride if you can, as it's the Fluorine molecules in FQs that allow them to penetrate so deeply at a cellular level.

I apologise for yet another lengthy post and for rambling all over the place.

Look up Glutathione...again you will find info on this on Floxie Hope. I really can't recommend too strongly that you get onto that site and begin to read. Lisa has organised it well and you can see a menu of her various pieces of research and writings, quite clearly. There are personal stories of people who've recovered. Lisa was Floxed herself.

I need to shut up and look for that letter...probably be tomorrow now though, unless I get lucky.

Carol

 

 

Now I see the length of what I've just written, I want a delete button. Sorry 

You're right Gayle, it is a lonely hell being Floxed but I'm here with you and Clix and anyone else here too :-)

That's horrible for you to have your heart racing now. Can you do anything to slow it?  My heart rate is fast a lot and I get a bit trembly, plus recently I've noticed a slight tremor in my hands.

We do all need to support each other and I agree, it'd be good to work towards getting the word out. I've got the message out to my family and friends, till they're sick of hearing it! If I can prevent even a few people from taking an FQ, then it's something. Awareness needs to go wider though..

I hope you feel better soon

Carol

Hi Carol, and Gayle, and Clix,

I've only just found this thread, thanks for signposting it,Carol - and I have to say you're a marvel of support and good advice to victims who desperately need help.

I'm joining these discussions because my husband, who has MS, was floxed a couple of years ago, and I really want to help get the word of warning out there.

My only offering here is that, when we realised what was happening to Phil, I read that the toxins are fat, not water, soluble, and that he should take extra oils to help flush them out.  I gave him 3 large capsules of evening primrose oil a day plus one of cod liver oil at night (not in the day - fishy burps!!).  Warning - you have to be careful not to overdose on Vit A, as there is usually the max RDA in each fish oil capsule. I think I was very generous with good olive oil in salad dressings as well.

If I can remember anything else we did, I'll post it later!

Keep going!

M

and another thing - raw virgin coconut oil.  It's usually a jar of white stuff and can be found in Sainsburys.  Quite dear, but a jar lasts for ages.  We use it instead of butter/spread, and it tastes really good with most things. You can also cook with it, just like olive oil.  It has loads of health benefits (and I swear it healed my husbands bed sores when all the stuff from the nurses didn't help at all!).  Or use it as a skin cream/ moisturiser.  Give it a go!

I read your post with interest,   Am now going through what you described,  It is my brain that is the biggest worry, no one in the NHS seems r

to take my concerns seriously . all I know is what I am finding out myself, scary .

Hello onecrop 

I'm really sorry you are going through this and yes, it is very scary.

Have you been Floxed recently and what with?

It can be very frightening, especially with more neurological symptoms; you are bound to worry about your brain. If it helps, please tell us what you're feeling.

It makes it so much worse when the medics don't take you seriously. Believe me, more don't know about FQs than do.

Take care where you read, as you can get so easily freaked out and think you'll never get better. Most people do but it can take a long time. Try to hang on to this fact. I didn't know two and a half years ago, whether I would ever walk again but I did and although some things are still a problem, I do feel much improved.

I was awake all last night and have just woken from a deep two hour sleep. I feel like I've been drugged (which I haven't). This feeling seems to be common.

You might feel very alone but you're not; there are many of us and those of us here will stick by you.

Let us know how things go...please. Keep talking!

Try not to panic

Carol

Hi M

Interesting what you say about the fat soluble stuff.

I drink gallons of Coconut Water but haven't tried the oil. I have heard oils being mentioned before though.

I sent you a private message last night but it says you've not read it yet. Maybe you haven't got your account settings to notify you when you have one. It might be worth checking your settings...just click on your own name.

I'm going to send another.

Carol

Hi Clix 

I know we've been private messaging and I've just sent you one but I thought for the benefit of others here, you might like to tell us all how you've been getting on. It's been a while and I really hope things haven't got any worse for you.....hope you're feeling better....

Carol

Hi, Yes, I did see you'd PMd me last night but was busy looking for another email so I didn't actually open it til just now.  My settings all work very nicely, and I've just got the hang of finding all my discussions from the box top right under the banner - I used to try and remember the name of the threads then search for them - a bit long winded!!!

Dear Carol

I am so appreciative of all that you have written because it is exactly what I have and still am experiencing.

I can honestly say that I can identify wiith absolutely everything you have described. It is incredible.

The emotions, signs and symptoms are identical to mine.

I just  cannot express myself because I cannot think of anything more scary.

Now that I have seen that someone else has been through or still going through these horrendous signs and symptoms I feel that I can bear the unbearable things happening to me. I hope that that doesn't sound selfish.

Obviously I just wish that no one has to go through these horrible signs and symptoms/experiences.

BTW could you possibly send me a copy of the letter for the GP?

Lucy

Hi Lucy, so sorry you are going through this too, are you in the UK?? I found the site floxue hope to be a great source of support and advice.

Hi Miriam

I read what you had written i.e you 'had read that 'the toxins are fat, not water, soluble, and that he (meaning your husband) should take extra oils to help flush them out[u].'[/u]

I do not know if you can answer this question or not but I wondered if removal of the gall badder had led to fat soluble toxins being unable to be removed from the body hence triggering off the floxing.BTW my gall bladder was diseased and had to go!

Thank you for the info , I shall certainly be buying some of the cooconut cream.

Lucy.

Really I wish that you couldn't identify with my experience; I wish there were no need for this particular forum. None of us should be here!

That said and before I go into a rant....I'm glad that you are here and at least know now that you're not on your own, with this terrifying and chemically induced toxic syndrome. There are many of us and as we aren't getting any support from the medical profession, or even recognition in most cases that these adverse reactions are real and not imagined, we have to be here for each other. 

It was connecting with other Floxies, that helped me through (you asked me earlier how I have) and knowing I was not going mad and having somewhere to have a good moan or ask questions and acquire info etc. 

If you can identify with me a bit, you should keep in mind that I am probably about 70% 'recovered' now, still have relapses and flare ups though. I'm not out of the woods and maybe never will be but it's better. It has been a long hard slog (over 2 and a half years) but the general trend has been upwards. Sometimes new health problems have added themselves to my already long list and I still have ongoing  FQT problems. I have no idea what's to come either, as the action of FQs is one of cascading through the system and cyclical things happen. We all have that uncertainty though; none of us know what's to come....

Remember, I did nothing, took no extra supplements, just let my body dictate what it needed to do and time has done the rest.  I am lucky that I have not had to try to hold down a job (I don't know how floxies do- many can't they are so ill) and could rest and sleep whenever I needed but the human body is an amazing thing and can repair itself - I know there are some who don't recover and my heart goes out to them. If I can then so can you. Try to hang on to that. 

I would recommend that you read up something about FQs and how they work. There may be times when you need to explain to a doc what you know is going on in you and it does help to make that approach, from a base of having some sound scientific knowledge. Look at Floxie Hope for easy to read info.

I will search for the letter; I did see it recently and there is some other stuff I'll PM you.

Sorry, I got into a bit of a ramble. 

Please stay in touch...check you have your settings to send you email notifications of various discussions and posts. Even if you are not part of a discussion thread, you,can click on 'follow this discussion' at the top of the original post.

I'm sure more people will be in touch with you now you've posted - glad you did :-)

Carol

Nothing to apologise for.

I have just taken some vit C and revised my food shopping list.

Lucy.

Hi Lucy, well that's an interesting question and I have no idea of what the answer is!  I can't even remember exactly where I read about the toxins being fat-soluble, although I think it was on floxie hope.

From what I understand of having one's gall bladder removed, the body can still deal with fats but I think I heard you're supposed to cut down on them.  My theory is that presumably most floxed people do have their gall bladders intact (my husband has his, for example), so I don't think not having one would make any difference.  If there's a rush of floxed people saying their gall bladders have been removed then we'll have to think again!

Keep in touch!

Miriam

Thanks for your nice comments. I would be grateful if you could possibly find the letter for the GP. Hope you don''t mind my asking you again? Kind regards

Lucy.

I will search for that letter and anything else that might help you explain things to your GP.

This could take a while though; don't forget that although I am much improved, I am still Floxed and suffer form fatigue, brain fog, pain amongst other ADRs. My notes are in a jumble and I have to look for what you need, so please bear with me and be a bit patient. You can ask all you want, that's not a problem but it won't make me find the stuff any faster...I sometimes move at a slow pace and have to take care of my own stress level too, as I am not in good health either. I do what I am able and nothing more but I have my limits, so I hope you can understand this:-)

I'll be in touch 

Carol

 

Hi Carol AND Lucy,

I have a copy of the Dear Doctor letter in my hand!  As the new UK Ambassador for QVF (!) it's one of the things that they sent me.  However, being in my hand won't get it on here - and I'm not sure if we can attach things to these posts?  Maybe I'll try and cut and paste the document this evening.  If I can't, I intend to have it on the new FB page anyway, so why don't you join us there Lucy?  It's quinolone toxicity support UK.

Thanks Miriam. That saves me from searching my system!

Has anyone heard from Jean? I hope she's ok

Carol

Gayle, If you use Facebook, do you want to join the new UK group that Miriam mentions further down this discussion?

Hope you're still in one piece

Carol

Onecrop, are you interested in joining a new Uk group for floxies? If you are on Facebook, it would be great to see you there. Miriam gives the name of the group here...this post will probably now move to the bottom of the page I think.

How are things going for you?

Carol

Hi Clix

Sorry to write to you here; I was/am going to message you but I thought I'd just invite you to join this new group for floxies in the UK. The only problem is that you have to be on Facebook to access it.

I hope things are improving since we spoke. You can reply to me by message if you prefer. Forgive me for not being in touch for a little while.

Carol

Dear Miriam

Thank you.

I will consider what you have said.

Hope you are well.

Lucy.

 

Hi Onecrop, the FB site for Uk floxies is called quinolone toxicity support uk.  It's a closed group so you have to click the 'join' button (on the main header picture), then we'll let you in!  Let us know it's you in a message (next button I think) if you have a different FB name!  It's only just at the beginning but we hope to have a lot of info and support on there.

This goes for Clix and Gayle as well of course - also anyone else who is gaining something from this page and is Uk based.  (There are many sites for the USA which is why we're keeping it to UK).

Hi Carol

Thank you for your supprt.

I tink that I am going through nother flare up.

I washhed my hair four days ago and got a headache. Today I had a shower plus washed my hair again and i have had a severe nauseating headache all day long. I have not known what to do with yself. It is as though everything is starting off all over again but why?

My joints are throbbing, both achilles tendons are equally as tight, rigid and stiff. I just hate tthe sensation of tingling around each ankle.

It is like psychological as well as physical torture.

I cannot believe that medication could do this.

I have read some postings on flare ups, detoxifixcation of this vile fllourine fro the body but I am at a loss to know which way to turn to get any relief from the signs and symptoms.

End of rant. I hope that you are feeling a lot better.

Lucy.

That's ok Lucy. I remember the fear and confusion very clearly and if I can help in any small way, then I'm glad.

Sorry to hear you are having a flare up.

Yes, it is both mental and physical torture and I hope you've managed to find a way through.

Forgive me but I forget things and you've probably said already but how long ago were you Floxed and what with? I can't remember if you said your ADRs were delayed or not. Apologies if you've already said but it could be on another thread and I'm just being dumb!

Carol

 

Thanks Miriam,  I am all over the place at the min, not sure if I had replied or not. I received a reply from my GP re my complaint  at me being prescribed Floxicin. At first glance they are telling me they prescribed the Floxicin and saw no problem that I already had Neurophy diagnosed years previously and do not seem to be considering abnormal. I also complained about the care I received no or never as the case was and is,  I am so Ill and still cannot get examined. I was told by my HIV consultant I gad an extreme reaction at the rare end, and that was that.

I had my gallbladder (filled with stones and infected) removed when I was 15 years old and from virtually the moment that happened I have been unable to tolerate most fatty foods.  No really spicy foods, either.

I have only taken Cipro once, for 5 days, and I'm still "evaluating" some strange symptoms I can't remember having before. 

Hi Sandra, I've met you on other threads! 

If you've only taken Cipro once it may not have had a bad effect on you as the toxins are cumulative and some people can tolerate one or more courses - some even never seem to be affected.

I would always advise playing it safe and not risk taking it again (or any other quinolone).  Your 'strange symptoms' might well be to do with it (or might not!), also, sometimes things happen like aches and pains (or worse) moths after you've taken it.  Which is why not all that many people realise how bad it can be.

keep well!

 

Thanks to you getting me up and reading about this family of drugs, Miriam, I've had my doctors enter into my chart that I'm to never be prescribed one of them (because I won't accept it).

The symptoms I speak of seem to focus on my joints, particularly my left knee and the tendons behind it.  I also have "restless legs" at night and I *never* had this in the past.

Not enough people (medical professionals or us, the common patients), realise how devastating the affects of this group of drugs can be. 

I think they're mostly prescribed out of laziness - a GP knows they will knock out anything, so no point prescribing a more targeted antibiotic - right?  Fortunately, so much fuss is being made about antibiotic resistance at the moment that these quinolones are being put back in the 'last resort' box - which is where they should always have been kept, for dealing with life and death cases.