I need help - just left hospital with deadly drug

[Eeyore]

Based on the antibiotic sensitivity testing, there are other antibiotics that would work - including at least one oral antibiotic and numerous IV antibiotics.

Each UTI is different - but the antibiotic sensitivity testing suggests that in this case at least there are other options for you besides cipro.

 

[starlily88]

As ME patients, our experiences with docs are SO different. For us, it's generally expected that the doc will not understand our problems, and even with a lot of time and money spent, will not be able to figure them out. We expect they will dismiss our concerns as unimportant, crazy, illogical, or even made up, possibly for drug seeking. We don't expect to be treated with respect or compassion. It's very sad that it has come to this, but that's just how it is for us.

I totally agree with you, it is very sad. I feel like most docs see most patients as horses but ME patients are zebras. When my Internist used a drug for gout, only to be used 7 days on me for over one year, I ended up in isolation for 8 days - had a bone marrow biopsy, and put on a drug that is just awful. Cancer patients hate this drug - it makes the bone marrow grow white cells. It was a horror! He never ever apologized, never to this day even acknowledged it - yet my doctor cousin was
yelling at me on phone "who in the heck gave you that drug, it causes leukemia"
I was shocked he knew this - he said "we learn it in 2nd year med school"
Sure enough, my oncologist told me I probably would be diagnosed with leukemia due to this drug.
The FDA had black boxed this very thing - the drug was NOT to be taken after 7 days - if so, leukemia would probably result.

Since then my 3 cousin doctors have told me the "truth" about what care or non-care I am getting, and what is so wrong about what my GI told me after doing an endoscopy. I had a serious operation when I was younger.
After the endoscopy, this GI told me I never had the surgery because the "cut" was not there. My cousins laughed at this, told me she was wrong, and that the cut used in the surgery lasts for your lifetime.

Sure enough, my next endoscopy with a new GI - was different. He declared how well the surgeon had cut me so very long ago. They told me that if 12 GI's were looking in your tummy thru a scope, there would be 12 different opinions.

 

[Kati]

I have read the black label for Cipro. i can't read anywhere it causes mitochondrial dammage, can anyone point out to the reference?

I also wonder if those harmed by these drugs (Levaquin, Cipro) belongs to a particular genetic profile?

Third question, are ME/SEID patients more prone to adverse reaction to Cipro and Levaquin than the regular population?

(These would make interesting research questions)

 

[Eeyore]

@starlily88

Do you remember the name of that drug? I'm very curious as to what he would have given you. Usually acute gout is treated with NSAIDS and colchicine, possibly steroids - none of which, as far as I know, causes leukemia. Longer term, allopurinol or the uricosurics are used to keep uric acid levels down and prevent future attacks.

I am scratching my head as to what he would have prescribed for a year that causes leukemia...

 

[Eeyore]

@Kati -

I know an ME specialist who frequently prescribes cipro and does not feel that it causes any particular problems (I'm assuming, or he wouldn't routinely prescribe it). Virtually his entire patient population is ME/fibro/MCS/etc.

My mom had a bad ME-like illness when she was a teen, and developed POTS at that time (although no one knew what it was - they just saw she kept fainting, ran fevers for a year, etc.). She recovered well, but she still has some mild manifestations but is in overall excellent health and does not have exertional intolerance. She did lose a year or 2 of school though and spent a long time hospitalized in the 1960's. Anyways, she has taken cipro and not had any reactions to it. She has no joint or tendon problems and is very active at her age. She's not hypermobile and generally not chemically sensitive, though any smells tend to bother her a lot more than is normal, and doesn't like loud noise or bright lights.

I have not taken cipro, and don't plan to if I can avoid it. I just think there are safer meds for most things - but I'd be more scared of gent than I would of cipro. It's always a balance. For a UTI I'd probably go with nitrofurantoin. I've never had bad reactions to macrolides, and nitrofurantoin usually works well for UTI's.

 

[Tunguska]

I have read the black label for Cipro. i can't read anywhere it causes mitochondrial dammage, can anyone point out to the reference?

I also wonder if those harmed by these drugs (Levaquin, Cipro) belongs to a particular genetic profile?

Third question, are ME/SEID patients more prone to adverse reaction to Cipro and Levaquin than the regular population?

(These would make interesting research questions)

A lot of what you ask has been covered in the FQ groups. I don't have many links on hand, but quite a few linked off this site, some on this page: http://floxiehope.com/2015/01/23/fluoroquinolones-damage-mitochondrial-lipids/

Last I knew the prominent black box warnings were for tendinopathy and permanent neuropathy, both common. Each becomes a larger set of symptoms when you look into them. These are the most visible/publicized. They're not accurate either, tendinopathy is reported as tendinitis but it's mainly form of tendinosis (and extends beyond tendons).

The drug affects healthy people and athletes are told to avoid it. If someone has ME you'd want to be extra careful, the damage shares some mechanisms, like NO/ONOO cycle, except tendons/cartilage where it's never been clear to me.

Where I live the drug is popular, black box warnings are not required printing on pharmacy handouts and were not listed, but curiously diagnoses of fibromyalgia are high.

 

[Kati]

@Tunguska i think we need careful about making associations without statistical analysis (fibromyalgia diagnosis in relation to use of Cipro) and further research.

@Eeyore personally I tend to stay away from blogs when it pertain to make decisions about my own care.
what I would like to know is the complication rate following Cipro, who is more at risk, whether there are safer and just as effective alternatives.

 

[Tunguska]

i think we need careful about making associations without statistical analysis (fibromyalgia diagnosis in relation to use of Cipro) and further research.

It's not a statistical issue, it's procedural. Over here if you come in with symptoms associated with FQ toxicity following a course you get a few standards tests which all return normal. If tendons are the only issue they assume it's reactive arthritis. If you have anything else you're sent to be evaluated for fibromyalgia, which is our popular catch-all, so misdiagnosis is inevitable. I went through it.

 

[Tunguska]

personally I tend to stay away from blogs when it pertain to make decisions about my own care.

I might suggest you do read the resources the blogs link to, when they answer the questions you were asking. Sample: https://drive.google.com/file/d/0BzLMHZg5q0Y3VkVJUmhxSlQtbWs/edit

Ciprofloxacin has been found to affect mammalian topoisomerase II, especially in mitochondria. In vitro studies in drug-treated mammalian cells found that nalidixic acid and ciprofloxacin cause a loss of mitochondrial DNA (mtDNA), resulting in a decrease of mitochondrial respiration and an arrest in cell growth. Further analysis found protein-linked double-stranded DNA breaks in the mtDNA from ciprofloxacin-treated cells, suggesting that ciprofloxacin was targeting topoisomerase II activity in the mitochondria.

 

[Eeyore]

@Kati - As for efficacy, it all depends on the infection. Sensitivity studies on your infection are always better than any statistical study of what is usually effective. If it's sensitive to the antibiotic, then the antibiotic will work fine. For UTI's, the 3 meds they use are all pretty effective, and each has its own side effects - cipro (or other FQ), nitrofurantoin, and trimethoprim/sulfamethoxazole.

In my personal opinion, nitrofurantoin is probably the safest, but it can also cause fibrotic lung disease in rare cases.

Obviously many people use all of them w/o effects or they wouldn't be given out regularly by doctors...

 

[Ema]

I also wonder if those harmed by these drugs (Levaquin, Cipro) belongs to a particular genetic profile?

Third question, are ME/SEID patients more prone to adverse reaction to Cipro and Levaquin than the regular population?

(These would make interesting research questions)

I think so because of the interactions between FQs and GABA and therefore glutamate. It's been pretty well documented that there's an imbalance and excess of glutamate in ME/CFS which can be responsible for symptoms.

 

[Gingergrrl]

I have no doubt certain genetics come into play but in my case I got severe FQ Toxicity Syndrome and near tendon rupture two years before I got mono and almost three years before I got ME/CFS.

I was able to participate in a research study by Beatrice Golumb at UCSD re: FQ antibiotics and her group also studies gulf war syndrome. I believe the study is still ongoing but I would have to find the link if anyone is interested.

 

[Kati]

@Gingergrrl I got sick with EBV in nov 2008 and in March 2009 I was admitted with acute gallbladder disease, I stayed in 2 weeks because I was very sick with fever and pain, and they gave me Cipro, among other drugs. 3weeks after surgery I started having my first symptoms of OI, photosensitivity, depth perception, and so on. A few month later, chest pain and shortness of breath.

i am not necessarily blaming Cipro for that because I don't know at all what happened, why I never recovered. The gallbladder complication definitely stemmed from my EBV infection because at the same time I got sick with EBV I got liver involvement so it was brewing all along (I had mini attacks). I did not recover from mono from November to March. Was it the surgery? Was it the course of the disease? Was it the Cipro?

Each case is different. Some are very sensitive to drugs, and others are not at all. i hope we get answers to all of this mess.

 

[Eeyore]

@Kati - That doesn't really sound like the types of side effects that are a concern with cipro. We do know that people who get EBV never clear the virus, and that it alters your immune system for life (a number of genes are designed to alter/evade the immune system). On some level, it's not surprising that people who get EBV have altered health thereafter - what is surprising to me is that most people who get EBV do not have long term symptoms, or ever notice infection.

I probably don't actually have EBV and almost certainly not CMV. I don't know why this is the case. I had a positive test for EBV antibodies once (but I think just the VCA) and many other negative tests over the years. I suspect the one was a false positive.

EBV is a much more interesting virus and probably has many more health effects than is realized. We should probably be vaccinating against it or something - it should be possible. I know some people are working on a CMV vaccine.

 

[Kati]

@Kati - That doesn't really sound like the types of side effects that are a concern with cipro. We do know that people who get EBV never clear the virus, and that it alters your immune system for life (a number of genes are designed to alter/evade the immune system). On some level, it's not surprising that people who get EBV have altered health thereafter - what is surprising to me is that most people who get EBV do not have long term symptoms, or ever notice infection.

I probably don't actually have EBV and almost certainly not CMV. I don't know why this is the case. I had a positive test for EBV antibodies once (but I think just the VCA) and many other negative tests over the years. I suspect the one was a false positive.

EBV is a much more interesting virus and probably has many more health effects than is realized. We should probably be vaccinating against it or something - it should be possible. I know some people are working on a CMV vaccine.

Hi @Eeyore,

i am a registered nurse (well I was) and I am 100% sure I got EBV from a saliva exposure from a patient with cancer. (Saliva lamded straight into my mouth, I was starting an IV (Either stomach cancer or prostate, can't remember). Knowing that EBV may or is implicated in the genesis of cancer, it makes you wonder how virulent that strain was.

 

[Eeyore]

EBV is a DNA virus and it's a pretty complicated one at that - all the herpes viruses are - and there isn't much strain variability because of the complexity and because it doesn't have sloppy replication. I don't think that's the issue.

A large exposure can, however, matter - if you get a lot of infectious virions in you at the same time, you're much more likely to develop a severe infection before the body can control it.

I don't think EBV is tied to prostate or gastric cancer, but many people with cancer are receiving meds that have a major effect on immune function (e.g. cyclophosphamide, methotrexate, cisplatin, steroids, etc. - I'm sure you know this if you are a nurse). This immunosuppression can frequently cause EBV reactivation as immune surveillance is reduced. EBV mostly infects B-cells, and is tied primarily to hematological cancers (in particular, hodgkin's lymphoma, burkitt's lymphoma, and other blood cancers as well).

Unfortunately, nurses do have a lot of risk of exposure to toxic and infectious agents. Most nurses I know report at least one needle stick - fortunately most don't get anything horrible from them, but that happens too sometimes. Doctors get less of this (with the possible exception of trauma docs or surgeons) because they mostly write orders and nurses are at the greater actual risk of exposure.

 

[Kati]

EBV is a DNA virus and it's a pretty complicated one at that - all the herpes viruses are - and there isn't much strain variability because of the complexity and because it doesn't have sloppy replication. I don't think that's the issue.

i believe one paper recently mentioned EBV virus variation. Here is the other thread I started about the paper.

http://forums.phoenixrising.me/inde...tiple-tumor-types-and-normal-infection.37002/

 

[SOC]

I probably don't actually have EBV and almost certainly not CMV. I don't know why this is the case. I had a positive test for EBV antibodies once (but I think just the VCA) and many other negative tests over the years. I suspect the one was a false positive.

Are you saying you've never been exposed (no antibodies of any sort), or you don't have active infections? What about HHV6? It would be pretty unusual for an adult to have never been exposed to EBV or CMV, and extremely unusual to have not been exposed to any of the three. I'd wonder about your antibody production if you don't have antibodies to either EBV or CMV. OTOH, it would be extremely common to have antibodies, but not an active infection.

 

[Eeyore]

Yeah there are some variations, but not huge ones - compared to viruses with very sloppy replication like Hep C or HIV-1, which have extremely complicated phylogenetic trees, it's pretty stable.

I think that study isn't focused on increased risks as much as the need to accurately classify the virus so that vaccines are effective.

 

[Sushi]

I woke up crying due to my physical pain I have been going through for the last month. I can't bear to have another UTI

So very sorry. I hope someone is able to find a way to help you soon.