Symptoms started appearing 1 months after taking antibiotics and it is progressive

Hi tim91877

 

Thanks for sharing your story and giving me comfort...

 

I am glad that your symptoms are almost gone! I wish everybody poisoned by Cipro could get off it.

 

I really really hope that mine are related to Cipro and they go in couple of months.

 

Again apprecaite your help and comfort,it really fill my heart how ppl who have never met me help me through this :-* Stay in touch !

 

Sarah

I have virtually no doubt it's Cipro related

Cheers Ploddington, i figure somebody else is always worse off, i'm already much more compassionate for people in constant pain and severe illness, atleast with Cipro there is a good chance you will get better, i have a friend with muscular distrophy, very difficult to moan about what i'm going through to him.

Got to stay positive! there is a definately a mental element to Cipro, it's just another symptom like everything else it does.

I would also avoid all medications as far as physically possible, it will just confuse your body and it's healing process! The body has amazing ways of healing but it takes time................sometimes a long time!

Hi Sixxdog/Alex

Please stop taking the Cipro!

you don't sound crazy at all and it sounds like you are definitely having Adverse Reactions to the Cipro. They are very common and not rare at all.

Read the conversations about Fluoroquinones.

They are NEVER supposed to be prescribed as a first - line defence, except they are and I have met thousands of people online, who have been severely damaged by them. I am one. Took Levofloxacin 2 years ago and after the 3rd tablet I began to get more unwell. By the 7th day I could no longer walk as both Achilles and all tendons in both feet and ankles were damaged. I was bedridden for the next 6 months.

I had other ADRs too but luckily I can now walk a little and other effects are improving. the affected tendons still hurt but this is not surprising as one ADR is for all Collagen to be destroyed and if it grows back, it does so in a higgledy piggledy way; not the same aligned structure as before it was attacked.

Look up these antibiotics and if you go to the MRHA site, which might come under the Govt (.uk) umbrella now, you will find a Drug Safety Update from 2012, stating when these should not be used. Problem is, that doctors don't seem to have read it and the drug companies have 'hidden' the ADRs in their patient info leaflets, also making out that these are rare. Believe me they are not! I know people who have been crippled permanently by them, in many various ways....often after just one tablet.

The main thing is to STOP taking them.

I wish you well

Plodding on

 

Hi There,

OMG , what the hell have they given me?

No way I'm taking any more , is there anything I can do to stop the onset or to rid myself of the dose I've just taken before reading this?

Im terrified now , I feel better than I did earlier , but am now scared to death this is just the start. :-(

What can I do! , should I contact my ER now?

Blind panic has now set in.

Please Advise.

Alex

 

PS Alex. If you are on Facebook, there are support groups and much info too. Also look up the Quinolone Vigilance Foundation...they have a website, so you don't have to go through FB. 

This a very user-unfriendly site to be on. I have seen people answer or ask questions, from others, that were posted over a year ago and don't revisit.

Conversations can get very fractured and lose chronological order.

good luck

Plodding on

Scared to death about sums it up right now. :-(

Look at the post above yours.....Floxie Hope website is very good!

Will do that now.

Hope I haven't discovered all this too late.

Thanks for the advice.

Sorry to scare you but there is no other way to start to inform you of the dangers.

Don't go to A & E, as they most likely won't believe you and there is nothing they can do...honestly!

People say that taking Magnesium helps but if you go to one of the sites mentioned, you can find more help and info.

I'm afraid that you will get freaked out by what you read but bear in mind that I have improved by about 80% and I took nothing to help. There are many scary stories though, so try not to panic. 

There is stuff to print off, including a standard letter to give to your doctor. 

In the US, over the last 3 months, various TV news channels have been airing stories about Fluoroquinolones and the stations are being flooded with responses from people who are only just realising they are having Adverse Reactions. The ADRs can be delayed too, so that 6 or 7 months after stopping the tablets, people are suffering with an array of symptoms but they don't link them to the antibiotics.

Plodding on

I will try to answer any questions you have but anxiety and panic attacks can also be caused by FQs....I know it's hard but try not to blind panic. Keep breathing...you might feel like you are going to die but it's all part of the Toxicity Syndrome

Plodding on

I'm assuming by what I have read so far that there is a build up effect with these drugs , so stopping at once is the first course of action and making sure I never take any in this family of ABs again?

obviously I will now feel every side effect that I read , as the mind is a powerful thing

im guessing just taking care not to damage myself physically is important as tendon damage seems to be a regular problem.

ive just read the the AD Mirtazpine reacts badly with Cipro as well! Nice that the GP checked this as I'm on Mirtazpine for depression.

should I refrain  from physical exercise for a few weeks or months to avoid damage?

Will stopping Cipro now help or am I doomed to pain and suffering for months and years?

how long did it take you to start to feel better?

sorry for the hysteria and the flood of questions , obviously I'm quite freaked out.

regards,

Alex

No apologies necessary. I was completely hysterical when I realised what was happening to me...everyone is (we call ourselves Floxies - we've been Floxed. 

You are correct when you talk about the cumulative effects. Some take one or two course of these and feel fine.nthey are already being damaged but they just don't know it. Everyone has their own individual tolerance threshold and these people may only need one more tablet for the explosion to manifest. 

They contain Fluorine molecules, so the drug penetrates deeper into every cell.nut is believed that they cause Mitichondrial damage.

I would say to be as mobile as you can but be very careful with you Achilles Tendons, as rupture is a possibility. All tendons can be affected, plus joint problems are very common.

i didn't know if I would recover but at 18 months I noticed a real change for the better. 

I already suffered from a Rheumatoid arthritis though and took/take a daily anti-inflammatory. Both these are contraindications! After the 3rd tablet of Levofloxacin, my GP prescribed Prednisolone (steroid) also contraindicated!!!

Some recover faster than others, as we are all different but you have no reason to think you won't. Don't feel doomed to pain and suffering for years...I know it's the mind that takes us to the 'worst case scenario' but as long as you don't take any more....EVER, of any Quinolone, you may not suffer as badly as you fear :-)

Floxie Hope is full of stories of peoples' recovery.

Have hope.

Try to keep things in perspective, though I really do understand how difficult it is.

Plodding on

Report your Adverse Reactions to the MHRA, under the Yellow Card Scheme and also to the dispensing Pharmacy..they will report to the drug company. Your doctor should do the same.

You can also look up the list of ADRs that others have reported there, not many have bothered but I urge you to do this...when you feel calmer.

Plodding on

Hi All,

OK so I'm one day Into this thing and today I've not had any Cipro ,

I'm a bit foggy headed and my right ankle is clicking a touch.

My kidneys don't hurt as much as they did yesterday.

I spoke to a a doctor friend of mine who hadn't heard of CTS unsurprisingly.

Obviously it's too soon to call , but hopefully I've dodged the bullet , I take some solace that I feel markedly better, but of course only time will tell.

One thing I have learnt , if you are taking Cipro (Don't) , but if you have no choice Never Ever take it with strong coffee , the reaction is horrible.

Will keep you posted as the weeks and months progress.

Take Care,

Alex

Hi Sixxdog

I  had just logged in to ask how you are today and saw your post! The email notification takes a while to come through.

I'm so glad you are feeling a bit better 😀

i read further up the posts before your first and saw some of mine from months ago...I posted all over these forums about FQs, trying to 'catch' people. My story is somewhere.

I have just read that there is now a 'post Ebola' syndrome. People are coming down with a 'chronic mystery illness'. Millions of pounds worth of Cipro was sent to Africa.....I think we know what they are suffering from! I did wonder at the time whether they would throw Cipro and other FQs at Ebola....it was useless of course. 

It's also strongly believed that Gulf War Syndrome is actually FQ Toxicity too. The military were given Cipro as a precaution. It was designed to fight Anthrax and other Pandemics.

ME or Chronic Fatigue Syndrome is also very likely due to FQs too.

It is mind-blowing.

I hope you don't have further problems but don't be too surprised if you do have some weird changes in how you feel....it can continue for a while and it is hard to think that everything might be due to the Cipro but it is very possible.

I shall keep my fingers crossed for you and let me know how you go on.

Take care

Plodding on

 

General info about Cipro and Ebola from Collective Evolution

Post-Ebola Syndrome Emerges In West Africa – Links To Bayer ExploredMay 10, 2015 by Lisa Bloomquist. No Comments.

  Share on Facebook   Twitter 

 82

SHARESSelect Language ​ ▼

[FILE - In this Sept. 30, 2014 file photo, nine-year-old Nowa Paye is taken to an ambulance after showing signs of the Ebola virus disease in the village of Freeman Reserve, about 48 kilometers (30 miles) north of Monrovia, Liberia. The World Health Organization said on Tuesday, April 28, 2015 that it aims to identify all new Ebola cases in West Africa by the end of May to stop the spread of the lethal virus before the rainy season. (AP Photo/Jerome Delay, File)]

 advertisement - learn moreA year after the Ebola outbreaks in West Africa, many who survived infection with Ebola are now suffering from “post-Ebola syndrome.”  Post-Ebola syndrome is characterized by severe joint and body pain, headaches, traumatic flashbacks, vision problems, hair loss, impaired hearing, extreme fatigue, insomnia, memory loss, anxiety attacks and more.

The cause of these symptoms is unknown. According to Dr. Margaret Nanyonga, a psycho-social support officer for the WHO, we need to “understand why these symptoms persist, whether they are caused by the disease or treatment, or perhaps the heavy disinfection.”

While it is easy to assume that this syndrome is a result of the Ebola virus itself, given the dangerous nature of the virus and the destruction it causes, I applaud Dr. Nanyonga for noting that the “treatment and heavy disinfection” of the patients afflicted with Ebola may be the cause of the ongoing syndrome.  Once a virus is out of one’s system, ongoing health problems do not typically plague the person who has fought off the virus. Post-Ebola syndrome is being reported as a disease that appears to be autoimmune in nature, and pharmaceuticals that are cellular poisons can damage cells in ways that lead to autoimmune (or autoimmune-like) illnesses.

The medicines given to Ebola patients included acetaminophen, ciprofloxacin, and oral rehydration salts  (source). The rehydration salts likely were necessary, as “in most cases the biggest threat is dehydration, which can be addressed by clean water and basic drugs.”  The acetaminophen and ciprofloxacin, on the other hand, are drugs that are toxic to mitochondria, the energy centers of eukaryotic cells. And when mitochondria are damaged (past their threshold for damage – everyone has some tolerance for mitochondrial damage), multi-symptom, often chronic, often autoimmune, diseases can result.

Ciprofloxacin is a fluoroquinolone antibiotic.  All fluoroquinolone antibiotics, including Cipro/ciprofloxacin, Levaquin/levofloxacin, Avelox/moxifloxacin and Floxin/ofloxacin, can cause Fluoroquinolone Toxicity Syndrome – a multi-symptom, often chronic illness that includes the following symptoms (source):

Peripheral Nervous System: Tingling, numbness, prickling, burning pain, pins/needles sensation, electrical or shooting pain, skin crawling, sensation, hyperesthesia, hypoesthesia, allodynia (sensitivity to touch), numbness, weakness, twitching, tremors, spasms.

Central Nervous System: Dizziness, malaise, weakness, impaired coordination, nightmares, insomnia, headaches, agitation, anxiety, panic attacks, disorientation, impaired concentration or memory, confusion, depersonalization, hallucinations, psychoses.

Musculoskeletal: Muscle pain, weakness, soreness, joint swelling, pain, tendon pain, ruptures.

Special Senses: Diminished or altered visual, olfactory, auditory functioning, tinnitus (ringing in the ears).

Cardiovascular: Tachycardia, shortness of breath, hypertension, palpitations, chest pain.

Skin: Rash, swelling, hair loss, sweating, intolerance to heat and\or cold.

Gastrointestinal: Nausea, vomiting, diarrhea, abdominal pain.

Note that all of the symptoms of post-Ebola syndrome are also symptoms of fluoroquinolone toxicity syndrome.

If ciprofloxacin was effective at treating Ebola, perhaps it would be excusable to give such a destructive drug to the Ebola victims of West Africa.  After all, Ebola is a dangerous, and often deadly, disease.  However, ciprofloxacin has never been approved for treatment of Ebola, or any other virus.  Ebola is a VIRUS and ciprofloxacin is an ANTIBIOTIC that is only effective in treating BACTERIAL infections.  The fact that Cipro has never been shown to be safe or effective in treating Ebola didn’t stop Bayer from sending 3.7 million euros worth of Cipro/ciprofloxacin into West Africa to “help” the situation.

Cipro/ciprofloxacin is a dangerous chemotherapeutic drug that depletes mitochondrial DNAand leads to chronic illness.  It should only be used to treat life-threatening bacterial infections. It should NEVER be prescribed or used without a confirmed bacterial infection present.

Bayer is, of course, aware of fluoroquinolone toxicity syndrome and the myriad of adverse effects of this dangerous drug.  There are more than 200 peer reviewed journal articles about the deleterious effects of fluoroquinolones on human cells listed HERE and many news stories have gone over how fluoroquinolones lead to multi-symptom, chronic illness.  (Some examples can be found in these links – story 1, story 2, story 3, story 4.)  The horrific adverse effects of Cipro and other fluoroquinolones aren’t a secret.  Decision-makers at Bayer know that Cipro is a dangerous chemotherapeutic drug that should only be used against life-threatening bacterial infections, yet they gave it to thousands of West African’s who were already weakened by the Ebola virus.  It’s an inexcusable crime against humanity to give a dangerous, unproven, unnecessary drug to unsuspecting people under the guise of philanthropy.

Sadly, I doubt that the Ebola victims in West Africa had access to the 43 page warning label for Cipro/ciprofloxacin, or the hundreds of patient reports about the deleterious effects of fluoroquinolones, or the 200+ articles about how these drugs damage human cells.  They were never given information about how these drugs damage mitochondria, or how mitochondrial damage is linked to both autoimmune and neurodegenerative diseases (source).  The people of West Africa trusted that they were being given appropriate medications to treat Ebola, not cellular poisons that do nothing to treat viruses, but do cause mitochondrial destruction and chronic illness.

Informed consent is a bedrock of medicine. The Hippocratic Oath and doing no harm are also bedrocks of medicine. Too many doctors are ignoring them at the peril of the entire medical system.

My heart aches for the victims of post-Ebola syndrome. Not only did the people facing it have to go through the horrors of Ebola, they now are living with a multi-symptom, chronic, possibly iatrogenic, illness.  Those suffering from chronic, “mysterious” diseases often have little support or hope for healing.  As S. Kelley Harrell wisely said, “Miraculously recover or die. That’s the extent of our cultural bandwidth for chronic illness.”  The WHO doctors rushed in to “cure” Ebola victims with ciprofloxacin (again, an antibiotic that has shown zero effectiveness at treating viruses like Ebola), but will have no way of treating the drugs’ adverse effects, and the now chronically ill people will be left to suffer.

Post-Ebola syndrome may be fluoroquinolone toxicity syndrome, but that has not yet been proven.  It would be an easy thing to figure out. See if all the patients who are suffering from post-Ebola syndrome took Cipro/ciprofloxacin. See if those who recovered from Ebola who don’t have post-Ebola syndrome took Cipro/ciprofloxacin. Compare health outcomes of groups of people who were exposed to Cipro/ciprofloxacin to groups who weren’t. It shouldn’t be that hard. I hope that Dr. Nanyonga and her colleagues are working on it.

Plodding on

Oh almost forgot.....

Add terrible diarrhoea and weird tingling in my hands to the list of ADRs , but I can cope with those.

Regards.

Alex

That tingling is peripheral neuropathy.

Anything 'weird' is likely to be the Cipro. It's action cascades through the whole system....so be prepared for odd things to happen.

Please report to the Yellow Card Scheme....you'll find it on the Patient part of this site. If more people reported then there would be a truer picture, so the docs might understand.

my husband went to hospital to have a camera down his throat (he is fine) and he told the nurse he didn't want to be given FQs if he had to have antibiotics. She said 'what are they? No we don't use them'. I told her my story and about the FQs. When I mentioned Ciprofloxacin, she looked surprised and said 'is that one of them? We use it often. I didn't know'

So be careful if you are in hospital...they do use it widely here in the UK.

Plodding on

Hi , 

Just a quick update, tingling in hands has gone now  , I had a few hot flashes in my lower left leg today , like a warm patch that passed after a while.

But hey ho, today's symptom of note is , incredible pain in the muscles at the top of my legs both sides , like I've waled up 1000s of steps , and sweats.

Damn this stuff is evil , how they still keep prescribing it is a mystery.

Yellow card report will of course be completed.

Thanks as always for your continued support.

Alex :-)

So sorry to hear of your muscle pain. I know that one :-(

My legs began to ache and then the pain moved down them, into my calves. Then moved down into my Achilles and feet. My legs felt like heavy dead tree trunks but with screaming pain too. Really hard to describe. Within a couple of days, I couldn't lift my right foot off the floor when I got out of bed in the morning and was limping. The next day it was both feet I couldn't lift off the floor and my feet felt like they had rocks under them. The pain was indescribable too. So I have some idea what you are feeling...hope your pain doesn't spread!

You could try bathing in Epsom Salts...people have said it helps. I didn't know that at the time and wrapped both legs in as many of those wheat filled bags, you heat in the microwave and rested them on a folded single duvet, as they needed something soft under. I also got liquid morphine prescribed by my GP, who has been onside the whole time...I was lucky in that respect.

Hoping things plateau for you soon.

Keep talking here if you can.

Plodding on

yes,you can take magnesium but not citrate

Hi Alex,

Just wondered if you're still around and how you're getting on?  We did set up a closed UK group on Facebook but I don't think you found out about it (unless you have a different name?).  Many of the names reading through this old thread are very familiar but not you!  If you still suffer (and many still do), I can't give the link here but look at the moderator's pinned post here:

https://patient.info/forums/discuss/fluoroquinolone-toxicity-syndrome-427305

you will see our UK website and link to the FB page.  It is a closed group and we do offer privacy and discretion (the whole world, literally, can read this forum!) but there are rules for joining so read the group description.

 

Hi I took Ciproflox  for  10days, 20 tablets for Prostatatis pelvic pain. It improved but while taking I was feeling shaking and tremor. Still I finished 20 tablets.

Again after 20 days I took another 10 day course, I was feeling shaky, tremor for infection I had the idea that it will go after I stop.  Now six days I stopped. Lot shaking and tremor. Hard to live normal. I cannot sleep.

Will it go in  future?  Can any body help?

Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

Hi Abdul,

I have just replied to your other comment.  These discussions are very old but luckily I was alerted to your posts!

Hi  miriam

You can reply me in my email   

Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

Hi Abdul,

You'll have noticed that you are not allowed to give your email address on this site - this is to protect YOU - the site is accessed by people from all over the world and someone may find your email address useful!

I wouldn't email with you anyway.  I am happy to share what information I have on this site but do not contact anyone privately.  If you want to ask me something about fluoroquinolones you can ask me here and I will try to answer - and then other people may benefit from the conversation.

Basically it is a diabetic problem. It dismanaged d body setting Now no body is helping me

Which country are you in, Abdul?  Different countries have different ways of dealing with this problem.  The USA announced recently that Cipro must be used with caution in diabetic patients as it is well known it interferes with the way the glucose is absorbed.  You will need expert advice on how to manage your diabetes and I am not an expert!