Floxie Talk Jun 20, 2013 | Homepage | 26511 Join The Conversation For over a decade this page has been dedicated to enabling the conversation for floxies to talk with one another. Sign up and subscribe to get all the latest comments. Share:
Thank you so much for this, any hope that my twin will get better is worth staying positive. I’ve shared Lisa’s story with him.
I’m really happy to visit a page that is focused on the good parts of this, instead of the bad. -Lauren
Hi Lisa! Great beginning! i’m looking forward to seeing more and more content. It’s great you shared your story with us. We need understanding and compassion so much.
Great job Lisa!! I love the clouds of hope!! How perfect! Clouds are always changing and so will the hope that you give to others. Clouds also hold rain and rainbows–things not controlled by men!! Keep going my friend!!
Thanks for this inspiring blog! Please feel free to use my story I sent you via fb. 🙂
Thanks for this website. I am newly floxed 10 days ago and suffering horribly. So much info on the website is terrifying, so your stories of recovery are a lifeline.
I want to take magnesium and glutathione. Can anyone recommend a good brand/make of these to take, which I can obtain here in the UK?
Thank you so much for making this site. I was becoming so frustrated with reading old forums and the general hopelessness everyone exuded – I just wanted some positivity. You have brought me that, and thank you for providing the link on People’s Pharmacy. I have also emailed people on AskaPatient about how they’re doing after the fact, and almost everyone was much, much better.
I took my 3 day prescription starting on July 25th of this year – I already feel loads better, not perfect but I do hope to one day share my story on here as well. Every day does get better.
If anyone is interested, I’ve been taking magnesium, kelp (for iodine), a daily vitamin, probiotics, drinking distilled water, juicing, then avoiding fluoridated toothpaste and NSAIDS. Plus taking in lots of love, positivity and gently exercising! We can beat this!
The fact I’m posting a response @ 4am may be indicative of my desperation for some glimmer of hope. Please post survival stories – right now hope is all I have to go on. Bless you and all who are or will be affected by this terrible affliction.
To all recovered floxies – did you find your recovery was a steady progression, or did the symptoms come and go for a while? I was first floxed 7 months ago, but didn’t realise what was causing the symptoms, and took a further 5 day dose of avelox 6 months later. Consequently, I am now very ill indeed. I have recently had 3 days of sleeping better, being able to eat and no anxiety, but the anxiety and panic have now come back. I am still confident that I will recover from this. I have ME/CFS and Lyme disease too. Did anyone else find that their symptoms waxed and waned before they went completely? Thanks
check out the video on you tube called “certain adverse events”. you can heal…it is just not an overnight fix….I healed but it took close to three years….CNS effects
Five years ago this week, I landed in the hospital with my first and only kidney stone, along with sepsis. I had had a hellish few weeks leading up to it, trying to get my house ready for houseguests and my daughter’s wedding. I was put on IV cipro for the entirety of my 4 days there, and sent home with a prescription as well. In the days that followed, I broke out in a head to toe rash, the most severe you can imagine. Then, I was given Cipro again when my stent was removed a few weeks later! At my follow up appointment, I asked about the rash, wondering if the Cipro could be causing it. The nurse practitioner said no way, it was probably from the morphine I received in the hospital. Of course, she gave me another prescription to “help” with the rash. When I got home, I started googling both the Cipro, as well as the new drug, and found all the negative information about Cipro. I started taking vinegar to help with the UTI I was suffering, which worked just fine. Since then, I have suffered so many health issues, from neuropathy, to severe muscle cramps, memory loss, skin rashes and joint swellings, to name aa few. I never even associated most with the drug until the last year or so. About 2 years ago, I began to have high blood pressure – sometimes 220/120, resulting in a couple of visits to the ER. Ultimately, I have suffered diminished kidney function, with only about 20% function. No one in the medical community will even discuss the idea that it could be the Cipro, but I feel that is the cause. I have always been a healthy weight, and pay close attention to my diet. What has finally begun to make a big difference in my health is daily magnesium/calcium, lots of sunlight or vitamin D3 supplements, and exercise! Although I have lost muscle which even after months of exercise still aches with exertion, at least my BP can be controlled (with only 3 drugs) – something that before just wasn’t happening. At the end, it is hard to comprehend that all these troubles could be attributed to the Cipro, but I believe that to be true. Now, I list myself as allergic to that class of drug, just to make sure I am never again exposed to it. The biggest help is to try and continue to think of myself as doing OK. I wish there was a way to get the information to the general public – I try in my small way to educate people. (And I am unable to post the link to this article to fb…?) At any rate, I feel myself getting stronger every day…
Has anyone recovered after being floxed twice? I was floxed in February this year, but didn’t know what was causing my symptoms and was given another 5 days of avelox 6 months later, which has obviously made things much worse. I was feeling quite positive until today when I read that if it happens to you twice your prognosis is not very good. I could really do with hearing stories of people who have recovered after more than one floxing, to help me get my hope back.
Do any of you floxie hopers live in the UK? I would like to see a doctor/specialist who has a knowledge of fluoroquinolone toxicity if possible. I know there are a few in the US, but can’t find any details of anyone in UK. If you know of anyone, I would love to hear from you.
Oh, and also wanted to thank all who have replied to my previous emails. Your support and encouragement help a lot. I have recently had a big flare up of symptoms after a few days of feeling a bit better. My nutritionist thinks it may be in reaction to a vitamin supplement she had started me on. I’m wondering if it was a detox reaction? Have others reacted badly to vitamin supplements? It’s hard to tell if it is just the normal ups and downs of the disease.
Your thoughts are greatly appreciated!
Another question I’m afraid!
Has anyone else lost the ability to sweat after being floxed? I have been waking up in a hot sweat, but have now started waking up burning hot but no sweat at all. Skin is bone dry all over – even under arms, which makes it harder to cool down, and am worried I won’t be able to detox if I can’t sweat.
Has anyone else had this, and has it got better again?
Hi Catherine I am in the UK, I have been floxed 5 times. the last time 3 years ago.I was first floxed way back in 1988,after taking two FQ pills for a UTI . which resulted in Toxic Psychosis/delirium. Did not know anything of this until I obtained my medical records last christmas. After going through them, found the fluoroquinolones 4 more times ! I Also found I was misdiagnosed with M.E/CFS after my run in with IV levaquin in 2000, I note that you have this diagnosis too, you may wish to check your medical records to see if you have any fluoroquinolones lurking in the past, as It is mine & many others opinion that the “invisible illnesses” are actually FQ toxicity in disguise. many of these first appearing /increasing substantially around the time these drugs were first marketed. FQ toxicity can mimic many diseases/conditions. I too am searching for a Dr in the UK, one who specialises in Integrative medicine, but as of yet, have not had much luck. As far as prognosis goes, everybody’s recovery/improvement is unique, to them, and depends on many variables. Myself I would like to say that, even after being floxed 5 times, although I now have ongoing kidney issues I have improved immensely from when I was last hit. Some of my symptoms have gone, and not returned, many have improved & continue to improve. I do get “cycling of my symptoms”, this is normal for us.
There are a few things things that I say to every fellow floxie I come across , 1/ Once you realise you have been floxed you must NEVER take another fluoroquinolone antibiotic 2/ Make sure you obtain some form of medical ID & state on it that you are severely allergic to ALL fluoroquinolone antibiotics.( mine also states NSAIDS & steroids) 3/ Obtain copies of your medical records.
And Lastly : The one thing to keep in mind, & never lose sight of is HOPE, the meaning of which is: HOPE = Hold On Pain Ends.
We WILL get there fellow floxies,
I do so understand your concern, trying to make sense out of all the myriad symptoms associated with being floxed.
I would like to say, the stress of worrying over the strange goings on in your body can be its own source of trouble. One symptom of stress is the dehydration of skin, which may account for your seeming lack of perspiration. Be sure to stay hydrated, and you might want to try body brushing with a medium bristled skin brush as a method to aid detox. Have you tried meditation? That helped me as much as anything trying to keep my calm over the whole mess of symptoms.
You will get better. Focus on wellness. You will have some unwelcome reactions to supplements – as even the most healthy do. I found I could no longer take fish oil – it made me break out in a terrible body rash. No one could understand why – I just couldn’t tolerate it any more. Over a year later, I’m still a bit nervous to give it another try, but think I’ve recovered enough to try again. Two steps forward and one step back is frustrating at times, but still progress. Best wishes 🙂
Another question! Does anyone know how important it is to avoid fluoride after being floxed? I have been drinking a lot of red bush tea, but have just discovered it contains fluoride. Should I avoid it?
Have switched to fluoride-free toothpaste, but it’s not easy to avoid fluoride in the water supply. I’m thinking of getting an under sink filter, but they’re very expensive and I’m not sure how necessary it is?
Your thoughts are greatly appreciated.
Hi Catherine, don’t know if you are aware, but there is a main facebook group set up recently for us UK floxies ,fluoroquinolone antibiotic toxicity UK, if you are interested.
Hi Catherine, yes I am a member, In fact i am a member of quite a few of the groups. The UK group is quite new, Only been going a few months and we are in the process of putting together a documentary at present.
Obviously ,everybody has their own opinions, theories, beliefs & understanding of this whole unbelievably complicated condition, and what works for some does not for others as we are all obviously individual, this is borne out actually by the way the FQs actually are tolerated by different people, some reacting to just one pill, others being able to take many courses before being hit, It all depends on our bodies individual make up.as does healing. As such, anything i contribute anywhere, is only my personal opinion, based on what i have learned in my recently realised, rather longer than I thought, floxing journey.
I notice that you say you have had M.E for at least 17 years, the fluoroquinolones were first approved and marketed around 1986, so have been out there for around 30 years, So this may not mean that their is not a connection to your M.E diagnosis, The amount of people with various diagnoses of “invisible illnesses” on the boards is unbelievable. I would seriously recommend obtaining your records back until then to see if you have any lurking, I thought I had only been prescribed them once,… until I looked at my records.
I notice you are very concerned about avoiding fluoride itself as much as possible, this when taken as a whole for everyone is only sensible, but I would try not to become absolutely overwhelmed by looking for it everywhere, in everything. I do not believe that it is conductive to healing, as you are always frightened, on alert, this raises your stress levels immensely, and therefore impacts on any immune function you still have & makes things harder to heal, people however have different opinions regarding this.
As far as fluoride being added to the water in the UK I do not know where you actually live , but at present only certain areas in the UK have extra fluoride added to the water. I am lucky as I am in the south of England, and we do not have it yet. I know it is in Ireland and the North west of England.
Many people with lyme are also then floxed, by otherwise invaluable LLMDS, who are unfortunately FQ illiterate, it happens far too often, they are not the drug of choice & should never be used to treat lyme infections.
At first I was terrified about joining any groups,for the very real reasons you state yourself,It is understandable when you are only very recently floxed, but then myself I also realised that i had to become informed, Like you stated in an earlier comment I desperately needed to understand what was happening to me, I realised in my case it was best to know my enemy, I could not fight what I did not know so to speak, it is usually when we don’t know,what is going on that everything becomes magnified, & often it then just becomes out of control, & terrifying I wanted that control back. it took a while, I became very lonely, I felt i was on my own, but when I felt ready, I took the plunge & it was the best thing i did however I do honestly understand that everyone is different regarding this.
I would just like to say there is so much information out there in the groups, I have learnt so much, and met some wonderful people along the way, I pick & choose what i take on board, If sometimes I feel a bit vulnerable I just back off for a bit, until I feel a bit stronger.
If, or eventually when you feel able , it would be really nice to see you there, in the meantime, if I can help further in any way, please do not hesitate to ask me here.
((( HUGS )))
Today I’ve lost the ability to produce tears. Does anyone have any advice on how to help with the symptom of dry eyes?