Floxed

Dear Doctor Sameer and others,

This is quite a difficult and challenging problem, I think, so I don't know whether anyone will be able to advise. I have been “floxed”, i.e. seriously affected by a fluoroquinolone drug. (You can read about this if you google for fq research org and if you then search for Noroxin, that's the drug I took.) To make matters worse, I was prescribed Iboprofen at the same time; also, I'm over 60 and had a previously existing condition and, anyway, the quinolones and fluoroquinolones are supposed be reserved strictly for last-resort use, when nothing else can be used or succeed.

I only had cystitis! Normally, I wouldn't take an antibiotic or even go to a doctor about cystitis and I wish with all my heart that I hadn't and that I'd used homeopathy instead, but regrets won't help now. I did try herb teas and drinking more water, but I think I waited too long and didn't drink enough, the weather was (and is) very, very hot and i was out driving and travelling, so the cystitis got very sore indeed, my urine smelt bad and I was feeling ultra-tired from it, so on the sixth day I gave in and went to a doctor. He said he was giving me an antibiotic and asked whetehr I was allergic to any, I said only Tetracycline, he assured me that this wasn't Tetracycline and I believed it to be some variety of pennicilin or similar, which I usually avoid but which I know I can take without any violent or drastic reactions.

I already had M.E., which I've had since 1961, at first violently but sporadically and later (from 1991) badly and all the time, until seven months ago when I came to southern Spain and the climate and air made an enormous difference and I've been much, much better and very, very happy. Well, that's come to a sudden stop!

One trouble with floxing is that, by the time you realise, it's too late, as opposed to a reaction to the usual types of antibiotic, when you know that in nearly all cases, once you stop taking them, you get over the reaction, with or without some help from probiotics or homeopathy or other. The quinolones and fluoroquinolones don't just kill bacteria – they combine wiith and disable their DNA; unfortunately, they also mess with all sorts of parts of our own systems, but I leave it to others to read more as I'm not a scientist and might make a mistake if I try to tell it. They also cross the blood-brain barrier. You can see why they're so toxic and so dangerous, but none of us knew that, of course, in fact most doctors don't know it either.

I took 400mg od Norfloxacina twice a day for six days and 1800mg of Ibuprofen daily for three days.

The ADRs didn't start at once; they came gradually and by the time i realised what was happening and why, I'd taken them for six days. At first, the reactions weren't too bad an di hoped i'd be one of the luckier ones, but they're getting worse and I know that they're likely to continue to get worse and that more may dvelop; i know because now I've read hundreds of other people's stories and hundreds of information pages. However, I can hope and I can try.

This is a list of what symptoms I have and when they started. It may nt be quite accurate, as i feel so tired and stupid and didn't note things each day, as they happened.


Day started (counting from first day took Norfloxacina)
Appearance of symptoms

21st July
Took first Norfloxacina in the evening I had had cystitis for six days.

22nd
Cystitis almost gone! If only I'd stopped and not taken any more.

23rd
No symptoms that I remember

24th
Twitching upper right eyelid but only a couple of tijmes. Very seldom have flickering eyelid and jave never had upper lid flicker.
Felt fine otherwise, spent 4 hours at Manolo's, from 5pm-9pm, saw him with other man. Fine but suddenly very tired.

25th
Sudden cramps in calves, not habitual.


Felt very, very tired, too tired to go to Manolo's at two 0'clock, tried but coulkdn't, felt worried that couldn't contact him to say, felt a bit less cheerful and happy.

26th Sunday
Terrible tiredness


Weakness, general


Tremors


Jerking, involuntary movements


Losing motivation and interest, feeling disconnected from my life, or more as though I still wanted to be connected but something was stopping me. Felt very “spaced-out” but not unhappy, quite drunk as though on morphine. Coudn't go out or do anything much, just lay down most of the day.


A kind of buzzing or faint vibration in my brain and in my body.


Skin and deep underneath skin felt on fire, the sun affected me as it never has before. Even in half-shade I felt it.


Metallic taste in mouth and losing senses of taste and smell

27th Monday
More cramps, more twitches, but mainly felt sooo tired and starting to feel rotten; cystitis seemed not be quite gone, either.


Sudden flushes of heat
Skin and all of me on fire, but nothing visible


Have completely and suddenly lost libido


Anxious, irritable, starting to lose interest in other people and in everything, losing joyousness, people annoyed me


Looked on internet to ask whether antibiotics can make you feel very tired. Decided to stop taking them, as only one day left.
Discovered what I'd been taking and what had happened to me, but still had no idea how bad it was or that it'd get much, much worse. Hoped I'd be one of the luckier ones.


Pain under right shoulder blade
Back of neck very stiff


Later - unbearably depressed, dizzy, stupefied, confused, sick, can't see properly, my head aches horrifically, my arms and hands are half-numb, my tendons, arms and calves are painful and cramping and many other symptoms.

Felt rather mad and as though evil worms in brain. (I don't mean i had hallucinations, just that that's how it feels.)


Fuzzy vision


A warm shower is too hot.

28th Tuesday
I think it was today that I went to see a friend and his horses, but I only stayed five minutes – felt so tired and somehow less interested in the horses, my emotions (sad or happy) were slowly slipping away, but especially the happy, life-loving ones.

29th
Arms tired, aching and half-numb, but prickling


Very dizzy, falling over

30th
Pain in jaw

31st
Weaker, dizzier, stiffer, more pain
In evening, was able to go for a walk.

1st August
As above

2nd August Sunday
Much, much weaker, dizzier, stiffer, more pain
Feel very sick

Lungs hurt (but they often did before this and i lareday had heart arythmia, and borderline congective heart failure, mainly because of M.E. Didn't take anything for those, just hoped for the best!


My brain feels poisoned – I can feel the poison and the alien substance acting in my brain.
I can feel it poisoning my body, too, but it's worst in my brain. It's frightening.

3rd
Forgeting how to talk

4th
Taxi to get shopping, coud only just get in and out of taxi, managed to walk round supermarket and unpack shopping afterwrads.
Took ten minutes to walk to Reception, difficult to walk and very, very tired and painful.
This was the last time I managed to walk that far or to go outside or talk to anyone.

5th
Tidied my plot on campsite in the evening, otherwise couldn't walk or do anything, but did manage a shower at bedtime
Pain in back; also, I think, in kidneys, liver


Sore throat

6th
Arms, legs, very painful, especially forearms and calves. Sacro-iliac suddenly clenches if not careful.


Don't want to go outside, as I live on a campsite at the moment and I can no longer face seeing other people or being seen by them – it feels too exhausting to contemplate, but also it feels as though I'm so fragile that even a look or a voice could damage me somehow and I can't bear to have to try to speak to anyone. I wait until after midnight when it's well dark and there are fewer people about and they're winding down and won't take any notice of me.

7th

Green flashes in eyesight, like floaters but huge, amoeba-like, lime green, first bright then more shadowy


Shocking pain, weakness and stiffness – can hardly stand or walk
Prickling and numbness all over
All symptoms worse


Earache


Feel sick from drinking water
Tummy-ache

8th
All of above, all worse, plus worse nausea


Even more dread of going outside when it's daylight and there are lots of people; also, I dread the sunshine, which I used to love. Stay in half-dark until late at night.


Arms now numb, tingling and uncoordinated from shoulders down to fingertips.


Feel very confused, disoriented, removed from my previous life.


Have decided that I will definitely commit suicide by winter. I think i need to wait until then, as it'll be too hot to do it with barbecue fumes. How sad – I loved my new life here and it was all so lovely, like a miracle. For such a short time. But I even feel quite resigned andnumb about that.


Sudden, much worse, pain in lower back from sitting; can't sit up for long. Very weak arms and hands, too.
Spread to middle and upper back


Too tired to do anything useful and too ill to care – but I'm managing, bit by bit, to finish this, which I started several days ago


Mouth, throat and earache worse and metallic

9th Sunday hasn't arrived yet.

Before I was floxed, I was very loving, generous in all ways, very trusting, very empathetic and compassionate, very loyal, with a joyous personality despite a lifetime of troubles and abuse. I loved horses, goats, trees, stones, streams, stars and sunshine, nature, poetry, literature and my children and family and friends. I suffered from persistent innocence syndrome, as i call it – I just kept on and on trusting poeple, even when it wa sobvoius that I shouldn't. I loved sex, but only in the context of love. Loved to laugh, too. Now, I feel nothing for anyone, except irritation and dislike for some. I know I do still love the same people and things, but I can't feel it, I can't care.

I have never liked heavy, starchy foods and can't stand butter or greasy things, but I love olive oil and I love most spices and herbs. I don't much like rice, whole or white. I like sea salt, but in moderation. I don't eat meat but sometimes eat and do like white fish. I mainly eat semi-skimmed milk, as yoghourt or soft cheese or in tea, lots and lots of fruit (several kilos a day is fine for me) and some wholegrain crispbreads or sometimes bread, also vegetables but less often and prefer them raw. Hardly ever eat white flour or refined foods, don't like sugar, sometimes eat chocolate if it's the very plain, pure cocoa kind, like the 99% ones. Sometimes eat soy desserys for a treat. Don't drink alcohol or soft drinks. Since floxing, I find it difficult tod rink much water and have to remind myself and be disciplined, although that seems to be improving – a few days ago, I had to force myself to drink even half a glass and it made me want to throw up, as it seemed to swill around. Never took coffee well, but sometimes drank it, decaf or whole. Now I can't stand it (which is a good thing, in my opinion.)

I have two adult children, who live in another country.
I hate being touched or breathed on by anyone I find unappetising or feel has a bad or hideden character; the unappetising people are usually the skinny, floppy, white ones, usually with bad breath or a silly laugh and often they have beards (but that's not always a sign!) or else they have a sort of crassness and unaliveness that repels and alarms me; barmen and reps are often like that.

I was very artistic and creative for a long time, though I'd rather given that up after too many things got destroyed.

That's all I can think of.... Oh yes, I'm small, dark (but hair's grey now) and did have very shiny hair and sparkling eyes and a ready smile. (Not at the moment, though.) Tended to smile a lot when happy and cry a lot when sad; cried a lot for other people and for the destruction of the world, more than for myself. Am not good at humans, don't understand them as they are seldom truthful to themselves, let alone other people; understand animals and plants when they talk, though, and they understand me. Dislike crowds. Not interested in having a lot of “mates”, just a few good friends.

Don't like dogs much, although would always help a dog in need. Used to like cats, but went off them. Love birds of all kinds.

Am right-handed, have high I.Q.

Tendency to blame myself for everything, though I think I've been getting over that lately. Love dancing, whistle (well) when happy, would like singing if weren't so very bad at it. Don't like modenr stuff – cars, cities, comnputers, televisions, etc. Like peace and quiet, like streams. Like breezes but not blustery wind. I love to be on chalk land; I was born and grew up on chalk land with beech trees.

When i have any kind of shock, I never react at once, but then it hits me hard after quite a long delay.

Fingernails neither horny not soft. Have always been supple and still was, until floxing.

There's other tsuff I can think of about me, but it's probably orrelevant and this is starting to seem egotistical, although I'm only doing it because I know hoñeopaths usually want a lot of information.

I think my personal remedy is pulsatilla, from a long-past successful treatment by a good and experienced homeopath, now deceased, but I could be wrong.

That's all I can think of about me.

I'm afraid this is a very long post. It's taken ages, as I have to keep correcting everything because my coordination is so bad.

My idea was that perhaps, as I've been damaged by noroxin, a homeopathic dilution of same might be a good idea ( I have two tablets left that I could use to prepare it, if you tell me how) but now think that may be the wrong approach; perhaps it should be a symptomatic treatment. I'd really appreciate some advice.