Tag Archives: Quinolone

Study Shows that Quinolone Ear Drops Increase Rates of Eardrum Perforation in Children

A recent study published in Clinical Infectious Diseases, “Quinolone Ear Drops After Tympanostomy Tubes and the Risk of Eardrum Perforation: A Retrospective Cohort Study” found that children who were prescribed quinolone (fluoroquinolone) ear drops were significantly more likely to experience perforated eardrums than those who used an alternative, non-fluoroquinolone, antibiotic ear drop – neomycin.

In the study, researchers tracked Medicaid data for almost 100,000 children who underwent ear tube surgery (tympanostomy). The researchers then compared post-operative eardrum perforation rates after kids were given either quinolone or neomycin antibiotic ear drops.

The researchers found that children who received quinolone ear drops were 60% more likely to suffer eardrum perforations than those who received neomycin ear drops, and the rates of eardrum perforation were even higher in the children who were given quinolones together with steroids.

One of the study’s authors, Almut Winterstein, noted, “Evidence on quinolones’ detrimental effects on soft tissues, animal studies, clinical trials and observational studies overwhelmingly point to the possibility that quinolones could contribute to the development of persistent eardrum perforations.”

Comments from Victims

When a story about this study was posted on The Fluoroquinolone Wall of Pain Facebook page, several people noted that their children had suffered adverse effects of fluoroquinolone ear drops. The comments included:

“My 14 year old was prescribed Cipro drops multiple times when he was younger for ear infections and after tubes were put in twice. Last month he had surgery to repair a hole in his eardrum. Now I know better…10 years ago I didn’t know.”

“Our daughter was prescribed these for years–always had a bottle on hand to start if we suspected an infection (as per her doctor) Now at 17 she’s had two progressively invasive surgeries to repair an ear tube hole that keeps popping open. She also has hearing loss due to surgeries. Next up is a specialist and a more invasive graft to get it to close. Definitely going to follow up on this research and results……”

“My daughter had two sets of tubes with these drops prescribed both times. At 6, the doctors determined she needed a 3rd set but would not give them to her due to severe perforations of her ear. They dismissed the perforations as caused by ear drum ruptures from ear infections. Now they are telling me that she may always have pressure related problems and may never be able to scuba dive. I refused the drops for her after I was floxed in 2015 by taking Cipro.”

It is absolutely heartbreaking to hear of children being hurt by fluoroquinolones. My heart aches for the parents of these children as well. They are victims of these drugs too.

Quinolones/Fluoroquinolones Damage Connective Tissues

I’m really glad that this study was done, and I commend Doctors Alrwisan, Antonelli, and Winterstein for conducting it. I hope that pediatric ENTs will hear about this study and understand that quinolone/fluoroquinolone ear drops are dangerous, and that they can lead to perforated ear drums and other health complications.

I understand that the alternative to quinolone/fluoroquinolone ear drops, neomycin, has adverse effects as well, but it does not damage connective tissues or lead to eardrum perforation at near the rate that quinolone/fluoroquinolone ear drops do. Quinolone/fluoroquinolone ear drops are dangerous, and they’re not only dangerous to ears. As Bill’s Story on www.fqwallofpain.com notes, other connective tissue problems can occur after using quinolone/fluoroquinolone ear drops. Bill states:

“I went to see my doctor and was prescribed ciproxin eardrops for an ear infection.They didn,t seem to help my ear so went back to doctors and told him my shoulders were very sore and I had a strange rash on my back.He suggested I may have tendonitis.”

Another “floxie” friend stated that:

“Ofloxacin Eardrops have ruined my life. It has left me disabled in horrible pain totally bedridden.”

Fluoroquinolones, in any form, are dangerous drugs that adversely affect all bodily systems–from tendons, to nerves, to hormones, to the gut biome, and more.

Fluoroquinolones should never be used unless a person is facing a life-or-death need, AND there are no safer alternatives. For all the children in the study who were given quinolone ear drops after ear tube surgery (tympanostomy), there was an alternative. Though the alternative, neomycin, is imperfect, it is safer than quinolone/fluoroquinolone ear drops.

Delayed Effects

Fluoroquinolone adverse effects are often delayed for weeks, or even months, after administration of the drug has stopped. This makes recognition of fluoroquinolone adverse effects difficult, to say the least. Retrospective cohort studies, such as, “Quinolone Ear Drops After Tympanostomy Tubes and the Risk of Eardrum Perforation: A Retrospective Cohort Study” are a good way to identify delayed adverse effects of fluoroquinolones. The researchers who conducted “Quinolone Ear Drops After Tympanostomy Tubes and the Risk of Eardrum Perforation: A Retrospective Cohort Study” looked at years of medical data (from 1999 to 2006) to determine that the rates of eardrum perforation were higher among those who were prescribed quinolone/fluoroquinolone antibiotic ear drops than those who were prescribed neomycin antibiotic ear drops. The eardrum perforations didn’t happen immediately upon administration of the quinolone/fluoroquinolone ear drops, rather, they were a delayed effect that was only uncovered by looking through medical records.

Fluoroquinolone toxicity resembles many recognized illnesses, including all autoimmune diseases, many neurodegenerative diseases, fibromyalgia, ME/CFS, psychiatric illnesses, digestive problems, autonomic nervous system disorders, diabetes, and more. It would be fascinating, informative, and useful if studies were conducted that looked at medical records of people who had been prescribed antibiotics, then compared future health outcomes to see if those who were prescribed fluoroquinolone antibiotics were more likely to be diagnosed with autoimmune diseases, fibromyalgia, ME/CFS, psychiatric illnesses, digestive problems, autonomic nervous system disorders, diabetes, etc. than those prescribed non-fluoroquinolone antibiotics. I would certainly bet on a strong correlation between fluoroquinolone use and many illnesses, but my bets mean nothing until the studies get done. I am hopeful that more studies examining the long-term effects of fluoroquinolones on multiple areas of health get done. It is only with research, data, and science, that the harm that these drugs do will be adequately recognized.

 

Study citation:

Adel Alrwisan, Patrick J. Antonelli, Almut G. Winterstein; Quinolone Ear Drops After Tympanostomy Tubes and the Risk of Eardrum Perforation: A Retrospective Cohort Study. Clin Infect Dis 2017; 64 (8): 1052-1058. doi: 10.1093/cid/cix032

Fluoroquinolone Toxicity Video of News Stories

Chris Jones made this WONDERFUL video –

https://www.youtube.com/watch?v=XgTiGhFrBgc

He posted it with the following instructions:

Over the last year there have been many news stories about fluoroquinolones. I made a video to highlight these stories. I am asking you all to please help me do a few things.

1. Watch it many times to get the view count up.

2. Like the video.

3. Leave a comment on it in YouTube. ( the news stories comments helped a lot, but once the story is gone it is a lot harder for new people to see them). These comments will help people who get floxed years from now.

4. Share as many time as possible.

After the comments and views are high. I will be emailing it to major news stations, talk shows, politicians, the FDA, and I recommend you send it to the doctor who rx you this poison.

Thank you everyone who had the courage to do a news story. I know how hard it was. And thank you to everyone behind the scenes who put them together.

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Fluoroquinolones and Mercury Poisoning

I recently received a message from a floxie friend that raised an interesting question. My friend asked:

Have you ever heard that FQ antibiotics can release stored toxins like mercury into the body? It has been two years since Cipro for me, and one month ago they found out I am highly mercury poisoned. But before I took Cipro, I was okay. The doctors are guessing that I have been mercury poisoned for a long time but somehow it is showing up in my blood now. Since the symptoms of Cipro toxicity and mercury poisoning are about the same, I’m wondering if they’re related.”

Over the years, several people have raised the question of whether or not fluoroquinolone toxicity is related to mercury poisoning, but I hadn’t heard of test-documented increases in mercury levels after taking fluoroquinolones until my friend sent me the message above.

The symptoms of mercury poisoning are similar to those of fluoroquinolone toxicity. The symptoms of mercury poisoning are:

skin rashes and dermatitis; mood swings; memory loss; mental disturbances; muscle weakness; nervousness, irritability, and other emotional changes; insomnia; headache; abnormal sensations; muscle twitching; tremors; decreased cognitive functions; peripheral neuropathy and more.

According to Dr. Thomas Nissen, “ Symptoms of mercury toxicity are many and varied, since mercury can both reach and affect nearly every cell in the body! Systemic (overall) effects can occur for this reason. The particular symptoms you experience first depend on your own genetic weakest links and on other toxic suppressors.”

Similarity of symptoms does not necessarily mean that two disorders are one in the same. For example, Chronic Lyme Disease and AIDS have similar symptoms, but that doesn’t mean they’re the same diseases. But it’s still interesting to explore the possibility of fluoroquinolone toxicity being related to mercury poisoning.

I searched for journal articles about the effects of quinolones on mercury. Unfortunately, I didn’t find much information. Most of the information I have is anecdotal and stems from me attempting to understand fluoroquinolone toxicity (with zero background in biochemistry), so please take this information for what it’s worth.

Fluoroquinolones have been documented to chelate magnesium and iron from cells. I wonder if mercury in the body is bound by these minerals, and then gets released into the body when the fluoroquinolone chelates the necessary mineral from the body (or when the quinolone binds to the mineral, stealing it from whatever it’s currently bound to).

Dr. Nissen points out that mercury can displace other minerals in the body, and that mineral displacement can cause serious health problems:

Replacement reactions, also called fight for site, occur when mercury (usually with a +2 charge) grabs the biological spaces which should be filled by necessary minerals. Symptoms that can be caused by a deficiency of minerals displaced by mercury include:

  • Magnesium: irregular heartbeat, receding gums
  • Iron: anemia
  • Copper: anemia, thyroid dysfunction, impaired digestion
  • Zinc: anorexia nervosa, loss of taste and smell, loss of appetite, low libido, PMS
  • Iodine: thyroid dysfunction”

For floxies, I wonder if the fluoroquinolone begins the cycle of mineral replacement. Fluoroquinolones chelate minerals, then mercury binds to the site that was vacated by the mineral, then mercury toxicity leads to chronic health conditions.

There are many “drug muggers” out there – drugs that deplete vital minerals and nutrients from the body. I wonder if all the drugs that deplete necessary minerals from the body are opening people up to mercury poisoning.

There are a variety of factors that determine how well one’s body can deal with mercury. Genetic factors such as MTHFR mutations (which play a role in determining how well a person deals with toxins) certainly play a role, as do an individual’s antioxidant levels. Many floxies have MTHFR mutations, and fluoroquinolones have also been shown to deplete glutathione and other antioxidants. Some floxies, including Richard and the author of Say Friend and Enter, have dealt with mercury poisoning issues as well as fluoroquinolone toxicity issues. Obviously, people who suffer from fluoroquinolone toxicity are less adept at metabolizing and clearing fluoroquinolones than those who take Cipro, Levaquin and Avelox without ill effects. Perhaps floxies are less able to handle other toxins, including heavy metals, as well.

There are a variety of mercury detoxification protocols that you can find online. Dr. Mercola’s protocol seems like a good place to start – http://www.mercola.com/article/mercury/detox_protocol.htm. He suggests:

  1. Avoid sugar, milk, grains and processed foods
  2. Eat foods that increase glutathione
  3. Take probiotics and eat probiotic rich foods
  4. Supplement magnesium
  5. Supplement chlorella
  6. Supplement MSM
  7. Eat garlic and cilantro
  8. Supplement minerals
  9. Make sure that you have sufficient hydrochloric acid levels to absorb minerals from your food
  10. Supplement vitamins C and E
  11. DMPS therapy

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Please note that chelation therapies (DMPS) can be dangerous and they should not be done without the direct supervision of a doctor. They can be hard on the kidneys, so they should also not be done unless absolutely necessary. Be careful, please!

As I noted earlier, this post is about possible connections, not established facts. Fluoroquinolones are not documented to have anything to do with mercury toxicity according to the journals I could find. The symptoms of fluoroquinolone toxicity and mercury poisoning are similar though, and given that fluoroquinolones have been documented to have profound effects on cellular mineral homeostasis, I think that it’s a hypothesis that’s worth exploring.

Post-script – If anyone reading this gets their mercury levels tested, please let me know what the tests say – I’m quite curious. Thank you!

Post-post-script – I wanted to point out some comments that Jason recently made on the floxie hope home-page about mercury. He has done extensive research on the topic and what he has to say is certainly valuable:

Toxic Metals and other Toxic substances (like Cipro…) are a HUGE issue, and as I guess you have gathered a mouth full of Mercury is bad situation to be in, and a major potential cause of Brain Fog and many many more issues for someone. This can be grossly exaggerated with someone with a MTHFR Gene issue, since they will NOT be able to detox Metals, Fluorides, Chlorine’s, and all the other Toxic Waste/Toxic Metals/Chemicals that we are subjected to on a daily basis properly, thus they will build up in the body and make the person more and more unwell. Since you are in the USA, for $99 the 23andme test is definitely a “no-brainer” in my opinion if you have not done it already, to find out if you do have these issues or not, on top of potentially being toxic in Mercury and other Metals.

Pretty much every living person has a toxic burden, Metals, Halides, and more; many people are able to keep it low enough to be healthy because their Methylation pathway works properly, actively detox, etc but others are not so lucky, and are even more unlucky if they do not realize this is the cause of most/all their issues. There was a whole bunch of discussion on Genes and the 23andme test last page starting from post 2 if you are interested in finding out more about this important part of someone’s health.

I would suggest to find a good ND, but be very careful with “Challenge Tests”. Many of them will want to give you a dose of DMSA or something else like DMPS, EDTA, etc and often the doses are VERY big, and quite dangerous (a big dose will ensure high levels show up on test, ensuring more money for them since you will “need” treatment = dangerous greed tactic). DMSA will mobilize several toxins in the body all at once, and if a person’s toxic load is large enough the body will not be able to handle all the poison being in the system at one time, and terrible damage can result. If you google Andy Cutler you will see he recommends not doing a challenge test at all, many people are following his advice and his Protocol for detoxing the body of Metals, he believes it needs to be done is slow safe fashion, which makes sense to me.

I myself am a little torn on the “testing issue”. I had a hair test done for Metals and Minerals which is what many people recommend you do to find out your toxic load. The things is it does NOT give you the whole picture, it is really telling you what the body is “expelling”, it is NOT telling you what your body is potentially harboring, since many of the Metals are hidden/stored in the body in Fat Cells, like the Brain, and if not mobilized they just sit there and screw you over, and will not come out in the hair, thus your hair test could say you are “low” in Uranium, or Nickel, but in fact you are not low, you are just not efficiently expelling/detoxing it at the time of the test. However, if the test shows you are high in something, there is a good chance you are actually too high and your body is trying to detox the excess of which some of it ends up in the hair. So these levels that show up, are somewhat dependent on if someone has a Methylation issue also, since poor Methylators are poor detoxer’s potentially skewing the results.

Having said all that, it is one of the best tests to do for this, and highly recommended to do regardless to find out what your Mineral profile looks like, though I still think there might be some viability of a “safe challenge test”, which would be as described above only with a smaller safer amount of a Chelator given right before a Urine test. Yet the reliability of the Hair test for Minerals is too somewhat questionable, out of the 100 or so labs around the USA that do these tests, 98 of them WASH the hair before doing the test. The trouble with this is many of the Minerals are water soluble, so washing the hair with a mild detergent and acetate like most do can skew the results of many of the Minerals. Google “Dr. Wilson Hair Test” and you will see more of what I am talking about. You will also find recommended ND’s on his site that use the one good lab in the USA that do not wash the hair.

This is all my opinion, one that is shared but none-the-less where I stand on the whole thing. I apologize for not giving a “Clear” solution, but this is frankly because in my opinion there isn’t one. As a result, for many years I did “nothing”, I now regret this and don’t recommend that course of action either. For yourself, my unprofessional recommendation is to “not” have a challenge test done, especially with Mercury still in your mouth, also do NOT take any chelators, and avoid Cilantro too, as this crosses the Blood Brain Barrier and taking this can bring Metal from the Mouth/Body right into the Brain. Doing the Hair test is a good idea, it will give you at least some idea on what is going on in your body, and if we are to believe Dr. Wilson, a VERY good idea, he has written a very long book on Hair Tests (his Mentor invented the idea) and how to interpret them, one I wish I had, but there is a lot of info on his website and ARL Labs website (the one he recommends) about how to interpret the results, and a good ND will hopefully be educated on these methodologies. Regardless of the results, if you can afford it if I was you I would find a good Huggins Dentist (trained in removing Mercury fillings safely) asap and start getting those removed. I had one that was “cracked”, and have no doubt it has caused me issues. Good luck, if you do have a heavy toxic load please be patient in its removal.

AND

I think the most popular is the Andy Cutler Protocol, which is a very slow/safe but PITA method, and uses synthetic Amino Acid Chelators DMSA, DMPS and also ALA all in small doses on a very strict time schedule due to their half lives. Lots of info on net about this you will see, chelators are bought from company out of Africa IIRC, there is a good Yahoo support group/forum where people answer questions etc (poorly organized unfortunately)

There are some others of note, and some are opposed to Cutler method such as Dr. Lawrence Wilson http://drlwilson.com/articles/chelation.htm (very good website with a TON of info on everything health). EDTA can be used, Dr. Mercola has made some suggestions like using Cilantro and others, funny enough Cutler warns against using EDTA and Cilantro, for potentially valid reasons, confusing the issue further. 😦

I think the best course of action for someone depends on many things. Do they still have Mercury fillings? Do they have the MTHFR & other mutations in their Genes? (found out with 23andme test) How big is their toxic load?

The first course of action is always to get fillings removed safely, and then getting a Hair metal/mineral test done. To me getting the 23andme test for $99 should be done too, for reasons I noted on FH. Then with that done, and with that information a suitable course of action can be recommended (I sound like a bluddy Naturopath here….) If someone has a huge toxin burden, I think the Cutler method makes sense, but the MTHFR could complicate this. If someone is moderately toxic, Cutler method might still be good, or a combination of ideas might be good enough, again depending on the MTHFR issue. If someone is only mildly toxic, they should for sure address the MTHFR issues first and foremost, which would help the body alleviate the burden on it’s own (of course with a MTHFR issue someone is likely NOT going to have small burden, depending on their age and exposures of course). Also with smaller toxic burden, things like Cilantro, Wheat Grass and regular exercise and Saunas should be enough to bring the burden down, assuming they limit their future exposures.

I hope that helps, unfortunately the waters are a little muddy on this, not unlike Cipro poisoning.

Just a final note that these are only my “untrained” opinions. Toxic load is a serious wide-spread issue, causes very serious health issues, and removal has to be taken very seriously and not “toyed” with, someone needs to put their trust in a professional or do a whole lot of research. There are many complicating factors, such as Candida overgrowth (something DMSA potentially stimulates), MTHFR & other Genes, current past/health problems of the person and things like condition of Liver/Kidney’s, Cancer, FQ toxicity, etc. (Emphasis added by Lisa.)

I also forgot to mention Spirulina & Chlorella, although I did mention Dr. Mercola, and this is 2 things he advocates. They are also something Dr. Sircus recommends (along with a few others, see link), here is a good article on the whole topic here: http://drsircus.com/medicine/essentials-natural-chelation

He actually gives a LOT of accurate advice in this article in my opinion, like his notes on ALA which are important, and note what he says about Magnesium too, which applies 10 fold to a Floxie with Heavy Metals. He notes that some studies found Chlorella on its own, did not seem to chelate anything effectively. However when used with Cilantro, it does, and this makes perfect sense to me because Cilantro is a “mobilizer”, it irritates the Metals stored and Chlorella is a “binder”, it is extremely absorbent and will bind to Metals to help them exit the body and not be “re-absorbed” once they are mobile, which is critical. Done wrong, the Metals from one area can mobilize and then be re-absorbed in other areas causing great oxidative damage like to the Brain.

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Don’t take Cipro, Levaquin or Avelox if….

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Post on Hormones Matter –

http://www.hormonesmatter.com/dont-take-cipro-levaquin-avelox-fluoroquinolone-toxicity/

In an ideal world, fluoroquinolones would be reserved for use in life-or-death situations. Until then, and until medicine can be completely customized and individualized, these groups of people should avoid fluoroquinolones:

1.  People who have reacted badly to a fluoroquinolone in the past.

2.  Athletes.

3.  People on steroids (corticosteroids).

4.  People who need to take NSAIDs regularly.

5.  Immunocompromised Individuals.

6.  People with Mitochondrial Dysfunction.

7.  Children.

 

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I’m a little overwhelmed – it’s okay (xoxoxo) – I just want to let you know

I’m feeling a little overwhelmed.

This isn’t an altogether bad thing.  I’m overwhelmed because so many people are reaching out to me to ask me questions about fluoroquinolones.  This is great – it means that word is getting out about the dangers of Cipro, Levaquin, Avelox and Floxin.  It means that people are reading what I write and connecting their pain and/or chronic illness to their prior use of fluoroquinolones.  Though it’s scary and infuriating for anyone to realize that they have been poisoned by a prescription antibiotic, knowledge is power and I’m pleased to be part of anyone putting together the pieces of their health puzzle, and realizing the cause of their pain and suffering.

There are a lot of you who I need to get back to.  There are multiple emails in my inbox that need responses.  You deserve a thoughtful response and I promise that I’ll get to you as soon as I can.  I’m trying to answer FQ related questions and emails, while also trying to keep my job, maintain my relationships and continue to write.  It’s hard to balance it all.  I’m not doing a very good job at finding a balance right now.  I’m overwhelmed.

My main goal in starting Floxie Hope was to help people through their Floxing experience.  Part of doing that is responding to people when they reach out to me.  I will get back to all of you.  I promise, I will.  I really am sorry for my less than timely responses.  If it has been more than a week and I haven’t responded to you, please re-send me your email – or just send me a note saying that you’re waiting for a response.

When I do respond to your emails, please keep in mind that I really don’t want people to think of me as an expert.  I’m doing my best to put the pieces together.  I’m doing my best to be right.  I’m doing my best to rely on credible research.  But I have been wrong about many things in my life and I don’t want people to take what I say as gospel.  I promise you, I am quite fallible.  (I’m right about fluoroquinolones being dangerous, over-used, ill-understood drugs – that is well established – but I may certainly be wrong about some details and some of my assertions.)  My perception that others are thinking of me as an expert is somewhat adding to me feeling overwhelmed.  It’s pressure.  It’s pressure that I brought on myself, but I do ask that you keep in mind that I’m just a Floxie who is trying to put together the pieces and I don’t know all the answers.

To all of the people who are helping me – THANK YOU!  Thank you to everyone who responds to comments on Floxie Hope.  Thank you to all of those who take time out of their busy schedules to support fellow Floxies on the facebook support groups.  Thank you to my family, friends, coworkers, allies and associates for your support.  You are all appreciated!

I encourage all of you with fluoroquinolone related questions to join a facebook support group.  There are lots of friendly people in the groups who can answer your questions and help you out.  Here are a few of them:

Fluoroquinolone Toxicity Group:  https://www.facebook.com/groups/floxies/

Fluoroquinolone Poisoning Group: https://www.facebook.com/groups/616904631689613/

Surviving Antibiotic Adverse Reactions: Avelox, Cipro, Levaquin, Floxin:  https://www.facebook.com/groups/261231253984443/

That’s enough for this post.  I need to get to some emails.  Or work.

Thank you all for your patience!

All my best,

Lisa

Thank you for reading Floxie Hope!  I hope that all who read Floxie Hope gain insight, support, understanding and, most of all, HOPE.  If you would like to support Floxie Hope, all contributions will be greatly appreciated!  Click HERE to contribute to Floxie Hope.  Thank you!

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Bring on 2014 – Happy New Year!

NYE 2013-2014.

HAPPY NEW YEAR!

Congratulations!  You made it through 2013!  For those of you who were sick in 2013, there were probably moments that you didn’t think you’d make it through.  You made it though.  You made it to 2014.  Congratulations and may there be many more years for you to look forward to!

I wish you all hope and healing in the new year!  I have no idea how long your road will be, or if 2014 will be better or worse than 2013 for you, but I sincerely hope that it is better in every possible way.  I hope that it is a year of healing for you.  I hope that your pain subsides.  I hope that you get the support you deserve.  I hope that you either gain back what you have lost due to your illness, or that you come to appreciate what you still have.  I hope that you are able to access the people, methods or techniques that help you to move on from your illness.  I hope that you find peace, healing, love, happiness, patience, hope, etc.

For myself, I haven’t thought of any specific New Year’s resolutions quite yet, but I hope that this picture sums up my 2014:

Always wondered

2013 was an empowering year for me.  I started writing about FQ toxicity in June of 2013.  I truly had no clue that anyone would want to read the things that I wrote, but it turns out that people like what I have to say.  I don’t think that they like what I have to say because it’s pretty or because I’m anyone special (I’m not).  I think that they like what I have to say because what I write about is important.  It’s important that the word get out about the dangers of fluoroquinolones.  It’s important that people stop being hurt by the frivolous and foolish over-use of DNA damaging chemotherapy drugs that are being pushed as “safe” antibiotics.  It’s important that people make the connections between many of the mysterious modern diseases that plague us and fluoroquinolones.  Fibromyalgia, Chronic Fatigue Syndrome, all autoimmune diseases, anxiety, depression, dietary intolerances, autonomic nervous system dysfunction, mitochondrial dysfunction, diabetes, Gulf War Syndrome and even autism can be tied to fluoroquinolones.  These are not little problems.  They are serious concerns and it’s important that they be addressed and fixed.  In bringing attention to the role that fluoroquinolones play in each of these diseases, I’m bringing attention to something important.

It’s quite empowering and, though I’m sure that what I just said sounds egotistical, I am humbled by it.  The over-use of fluoroquinolones is a big problem that leads to multiple levels of other serious problems.  The problems are systemic and difficult to bring attention to, much less solve.   Paradigm shifts and systemic changes are needed in order for meaningful change to come about.

It’s a big task, but someone has to do it.  That someone may as well be me.  It may as well be you too.  Even better, it should be all of us together.

We can do this.  We can make change happen.  We can stop people from getting hurt by fluoroquinolones.  We may not be able to save everyone today or even tomorrow, but we can try.  And in trying, we are doing something.  We are making the world a safer and more just place.

“Trying” can be something little or something big.  It can be handing out cards warning people about FQ toxicity, it can be attending the FQ Awareness Rally in Washington D.C., it can be starting a blog, it can be talking to your friends about what happened to you, it can be filing a lawsuit, it can be enacting legislation, etc., etc.

In 2014, I resolve to DO SOMETHING about fluoroquinolone toxicity.  I hope that change comes about.  But if it doesn’t, well, I have my 2015 resolution set, and I’ll keep trying until people know about the causal links between fluoroquinolones and chronic diseases, until the frivolous over-use of fluoroquinolones is stopped, and until they stop giving these poisonous drugs to children.

If you feel inclined, I hope that you feel empowered enough to do something about fluoroquinolone toxicity in 2014 too.  It will take all of us to bring about change.  We can do it though.  We have to be able to.  No one else will and it’s important.  So, bring on 2014.  Let’s get ‘er done.

 

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Truth Seeker or Conspiracy Theorist? You Decide.

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The disbelief that we face when telling people about our reaction to FQs is frustrating beyond belief. People assume that we’re wrong, or lying, or crazy conspiracy theorists when we tell them that an antibiotic caused our body to go completely hay-wire. We’re not wrong, crazy, lying, etc. The human body is just exceedingly complex and, unfortunately, poorly understood, and the effects of fluoroquinolones on our body are devastating. Here is an essay that I wrote about the topic of being thought of as a conspiracy theorist for shouting about the dangers of FQs. As always, shares are greatly appreciated. Thanks so much for reading it!

Truth Seeker or Conspiracy Theorist, You Decide

 

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Seeing through the Matrix

Do you remember that scene in The Matrix where Neo (Keanu Reeves) is offered the pills by Morpheus (Laurence Fishburne)?  He has the choice, he can take the red pill and see the real world, or he can take the blue pill and remain in the façade world, the Matrix.  He takes the red pill and he breaks out of the fantasy façade world and enters the real world – a place of destruction and suffering.

I took the red pill.  I actually took 14 red pills.  I’m not sure which one triggered the reaction in my system that changed my perspective entirely, but I see the world differently now, as a result of being floxed.  It would be horribly narcissistic for me to say that I see the “real” world now and that few others do, and I don’t mean that.  What I mean is that I see the world differently now than I did before, and that there are some things that I believe to be true that never even occurred to me before.  I broke out of my own personal Matrix, with those pills; those 14 fateful, life-altering pills.

This perspective shift is not unique to me, or to being floxed.  Whenever people experience a betrayal, whenever something that they assume is safe and protective turns out not to be, their perspective changes and they see the world differently.  Usually this is a bad thing.  People become jaded and bitter, assuming that they are going to get hurt again because they got hurt in the past.  I would like to think that this hasn’t happened to me.  I’m still pretty trusting.  But I do see things differently.  I’ll let you judge for yourself if these things that I now believe are jaded and bitter or if they reflect the “real” world.

I now see:

  • No one is looking out for patients.  The FDA isn’t (duh).  Doctors, Pharmacists and the other people directly involved in the medical system aren’t.  The legal system isn’t.  No one is.  The medical system doesn’t get to be the 4th leading cause of death of Americans by having the proper checks and balances that focus on patient safety and protection.  (Of course, there are plenty of individuals who are looking out for the best interest of patients, but the system, as a whole, is not.)
  • Much of medicine relies on magic, not science.  Officially, the mechanism by which fluoroquinolones cause tendon, CNS, kidney, liver, etc. damage is unknown. (source 1)  Scientists and doctors state, most of them truthfully, that they have no idea how these drugs mess people up.  It is also claimed that much is unknown about the way these drugs work to kill bacteria – the thing that they are supposed to do.  If the mechanism by which a drug works, and sometimes doesn’t work, is unknown, the reliance is on magic and faith to get the desired outcome, not science.  Doctors claim that their pills and potions are backed up by science, but they’re not.  They’re backed up by faith in a broken system.  BTW – the mechanism by which fluoroquinolones both kill bacteria and damage every cell in a person’s body is by forming a poisonous adduct to DNA.  This was found, then immediately ignored, in 1998.  Here’s the article – http://www.jbc.org/content/273/42/27668.full (source 2)
  • Doctor’s rely on anecdotal evidence all the time, but patients aren’t allowed to.
  • No matter how many peer-reviewed, scientific journal articles show the danger of a drug, doctors will believe that the scientific evidence supports its use until it is removed from the market.  Similarly, no matter how sick a drug makes people, it won’t be taken off the market unless…. I’m not sure…. Because flat-out causing cancer isn’t enough to get Humira (source 3) and Enbrel (source 4) removed from the market.  Perhaps damaging the DNA of humans will be enough to get fluoroquinolones removed from the market (read source 1 and 2), but I doubt that it will be.
  • Fluoroquinolone damage is everywhere.  A large portion of the people who are diagnosed with autoimmune diseases, fibromyalgia, chronic fatigue syndrome, leaky gut syndrome, anxiety, depression, dementia, arthritis etc. are actually suffering from fluoroquinolone toxicity.  (Of course, those diseases are real on their own, and there are many factors that cause them, but fluoroquinolone toxicity is one of the causes that isn’t even considered.)
  • If enough people repeat a mantra enough times, it will be seen as true, no matter what the evidence against it.  It almost makes me laugh, reading articles that point out the damage that fluoroquinolones can do to mammalian cells that follow that presentation of damning evidence with the conclusion that they “have an excellent safety record.”  (source 5)

I could go on, but I’ll leave it at that.

I have largely healed from getting floxed.  I fluctuate between 95-100% of my pre-floxing capacity.  Life has continued.  As I live my normal life, and feel fine while doing so, the memories from being sick fade.  Sickness is no longer my reality.  It is no longer shaping my day-to-day life.  It is no longer warping my perspective and shattering my trust in the medical system.  Normalcy has resumed and the trivial has, again, taken over.  It would be easy for me to go back into the Matrix, the façade world where I don’t understand how “mysterious” ailments occur, and to think that the systems that are in place to protect and sustain us are working as they should.  Undoubtedly, it would be healthier for me to leave my “Floxie” world behind and to go back to what everyone else considers to be the real world.  As a healthy person, I can do that if I choose to.

But I’m choosing not to.  I’m choosing to stay in the “Floxie” world.  I am choosing the version of reality, of truth, that I had when I was sick.  It may not be the healthiest thing in the world for me to do, but it feels like the right thing to do.  People are sickened by these drugs every day.  Their world is shaken to the core when their health, their pain-free, happy, trusting existence is brutally stolen from them.  It seems like the right thing for me to do to continue to see their pain, to acknowledge their struggles, and to fight the broken systems that are perpetuating the sickening of innocent people.  It feels right to stay in the dark and gloomy “real” world and fight the Agent Smith’s of the world who want to keep us trapped and sick.  So I will continue to do so.  The Matrix, with its niceties wrapped in naiveté, is enticing, but I prefer to know the truth.

Sources:

  1.  Sarah H. Elsea, Neil OsheroffST, and John L. Nitissll,  Cytotoxicity of Quinolones toward Eukaryotic Cells: IDENTIFICATION OF TOPOISOMERASE II AS THE PRIMARY CELLULAR TARGET FOR THE QUINOLONE CP-115,953 IN YEAST* Vol. 267, No. 19, Issue of July 5, pp. 13150-13153, 1992 THE JOURNAL OF BIOLOGICAL CHEMISTRY 0 1992 bv The American Societv for Biochemistrv and Molecular Bioloev. Inc. Printed inn.’S.A.  http://www.jbc.org/content/267/19/13150.full.pdf+html
  2. Arkady B. Khodursky and Nicholas R. Cozzarelli, The Mechanism of Inhibition of Topoisomerase IV by Quinolone Antibacterials*  10.1074/jbc.273.42.27668 October 16, 1998 The Journal of Biological Chemistry, 273, 27668-27677.  http://www.jbc.org/content/273/42/27668.full
  3. FDA warning label for Humira – http://www.accessdata.fda.gov/drugsatfda_docs/label/2012/125057s232lbl.pdf
  4. FDA warning label for Enbrel – http://www.accessdata.fda.gov/drugsatfda_docs/label/2012/103795s5507lbl.pdf
  5. Stahlmann R., “Safety profile of the quinolones,” Journal of  Antimicrobial Chemotherapy. 1990 Nov;26 Suppl D:31-44. http://www.ncbi.nlm.nih.gov/pubmed/2286589

 

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Lessons Learned from Getting Floxed

1980-08 #15 - Version 2

I’m going to start this post with a disclaimer – when I say I “asked for” this, I don’t mean that I deserved to get sick.  It is not my fault that I got sick.  I have made plenty of mistakes in my life, and plenty of the mistakes that I’ve made have to do with taking those Cipro pills.  But still, the bomb that went off in my body as a result of taking Cipro was not my fault.  Those of you who are sick from fluoroquinolones or other Rx drugs, it is not your fault.  The disproportionately horrifying adverse reaction that you are going through makes any responsibility that you have in creating the problem miniscule in comparison to the responsibility of those who are at fault.  There are people who are to blame for your illness, but you are not one of them.  You are a victim.  So, when I say that I “asked for” the things that have come into my life after getting Floxed, I mean those words literally – I asked for them.

I’ve always wanted:

  1. Purpose
  2. Direction
  3. Passion
  4. Righteousness
  5. Something to say that was important/interesting
  6. To be heard/validated
  7. A spiritual outlet
  8. An identity
  9. To be a fighter – to be strong
  10. To lose 10 pounds

I asked for those things.  I sent those desires out into the universe in whatever form I sent them – vague thoughts, wishes, desires, prayers, etc.  If you had asked me at any point in my adult life if I wanted any of those things, I would have said yes.  There would have been no hesitation.  Without a doubt, I wanted each of those things to come into my life.  I didn’t have a plan of action for how I was going to obtain any of them, other than the most trivial of them – to lose 10 pounds – I always had a theory on how to do that.  I wanted all of the more important things too, but I had no idea how to get them.

I vaguely looked for purpose, direction, passion, righteousness and an identity through my education and career choices.  I got a Masters in Public Administration with the hope of finding a way to make the world a better place through public policy.  I had every intention of finding my purpose and passion through my Master’s program but when the program ended it was a struggle to pick a topic for my thesis because I hadn’t discovered anything that I really cared about.

I work for a non-profit.  The non-profit that is my employer does good work in the community by lending money to developers of affordable housing.  I like that I do something that is generally helpful, but I don’t feel passionate about what I do.  I admire the people who feel passionately about their careers and their lives.  I wished to live like them, to have something that got me riled up, something that I really cared about, something that made a difference in the world and that made me someone important.

I never thought that I was particularly tough or strong.  I have always been strong physically, but emotionally and mentally, I was sensitive and (I hate to admit it) weak.  I would sacrifice myself so that others could win, or not feel bad.  I needed validation and was torn down easily.  I never had much will-power, thus the fairly constant unfulfilled wish to lose ten pounds.

Despite not having passion, direction, etc. my life wasn’t bad.  In fact, it was quite good.  I had my health.  I had a family and friends who loved me immensely.  I had enough money (everyone wants more, of course, but I had enough to get by).  I had a job.  I owned a home.  Life was good, it just didn’t have the “oomph” that I wanted it to.  I wanted more “oomph” and, over time, never specifically consciously, I wished for the things listed above.  I wanted them.  I asked for them.

I got all of those things.  I survived getting poisoned by Cipro and in doing so I learned that I’m not only a survivor, I’m a fighter.  I gained passion, direction, righteousness, etc. through screaming that it is NOT OKAY for people to be poisoned by prescription antibiotics.  I found that I have something to say and a surprising number of people are listening to me.  I found spiritual outlets (you can read about that here http://www.collective-evolution.com/2013/09/14/a-journey-through-pharmaceutical-induced-illness/) and I found my soul.  I found my purpose.

I got exactly what I wanted.  Through getting sick.  Through recovering.  Through Cipro.  Out of all the things in the world, fucking Cipro, brought me those gifts.

I asked for them.  I asked and I received.  They just didn’t come in the packaging that I was looking for.

It’s kind of funny, isn’t it?  In a shoot-me, horrifying kind of way, it’s funny.  Be careful what you ask for, because you just might get it.

There are some other things that I gained from getting sick.  If I had been a more wise person, I probably would have wished for them ahead of time.  They are:

  1. Empathy
  2. Compassion
  3. Patience
  4. Tolerance

I gained those things from being knocked down, from being sick.  When I was healthy, I didn’t even realize that I was lacking those things for those who are not healthy.  I now see the world in a way that enables me to have empathy, compassion, patience and tolerance for those who are struggling and sick.  In gaining those things, I have become a better person.

To wonder if it was the right thing, to wonder if my health and longevity should have been sacrificed so that I can have a purposeful and passionate life, is futile.  That choice, if it was a choice, was not made on a conscious level.  I certainly know that I will never sign up to get poisoned again and that I will do everything in my power to keep others from going through what I went through.  But the experience of getting sick, the experience of recovering, and now the experience of fighting, have made me a better person.  It’s good to be empathetic, compassionate, patient, tolerant, passionate, determined, righteous and even skinny*.  These are not bad cards to be dealt.

* Do NOT even think about taking a fluoroquinolone for weight loss.  I could list the ways that that’s a stupid idea, but I’ll just leave it at – don’t be an idiot.

 

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Legal Compensation for Fluoroquinolone Toxicity

I was floxed in the last months of 2011.  (I took the Cipro in November but didn’t react until December so my flox-iversary is debatable.)  For most of the time that I have been a “Floxie” the general word among fellow Floxies was that lawyers weren’t accepting fluoroquinolone toxicity cases.  It was only after the August, 2013 adjustment to the FDA warning label accompanying fluoroquinolones, that added the warning of permanent peripheral neuropathy, that I even heard of lawyers accepting fluoroquinolone toxicity cases.  Now there are at least 2 law firms that are taking fluoroquinolone toxicity cases.  I appreciate them both so I’m going to plug them:

Red Law, LLP

(310) 917-1070

http://www.redlawllp.com/

and

Nidel Law

(202) 558-2030

http://www.nidellaw.com/

There are a million personal reasons why you may or may not want to pursue legal recourse and I respect all of them.  It’s a very personal decision and I am not trying to pressure you in any way.  I do want to make sure that you know that the option is available though.  Both of the firms listed above are taking cases.

I have no reason to think that either firm is better than the other.  I have been in contact with both the Red Law attorneys and Chris Nidel, the principal at Nidel Law.  They all seem competent and professional.

Legal pursuits are probably the only way that the system is going to change; that people are going to stop being needlessly poisoned by fluoroquinolone antibiotics.  It’s not your responsibility to be part of the change in the world that keeps others from getting hurt, but it may be some consolation as you go through the pain of a lawsuit.

I could complain ad nauseam about how the legal system isn’t set up to compensate victims of fluoroquinolone toxicity, but I’ll refrain because it’s pointless.  We have to start with where we are, with the system as it is.  I wish you all the best of luck in getting your cases accepted, getting the compensation that you deserve, and changing the world for the better.

 

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The Silence Around Fluoroquinolone Toxicity

I posted this – http://www.hormonesmatter.com/epidemic-silence-adverse-drug-reactions/ on Hormones Matter on October 17, 2013.  It was originally similar to the post below but I changed and edited it until it became what I submitted to Hormones Matter.  I still like the earlier draft and since it’s more Flox focused, I thought I’d share it on here.  As always, thanks for reading!

The Silence Around Fluoroquinolone Toxicity

One of the more bothersome feedback loops that keeps the dangers of fluoroquinolones from being recognized is that people stay silent about their pain and suffering, and therefore their pain and suffering is not recognized or appreciated, and everyone in the medical field gets to continue to think that these drugs are safe and that adverse reactions are rare. Seeing is believing and they don’t see it, in part because people aren’t screaming. Of course, there are people who are screaming at the top of their lungs about the pain and suffering caused by fluoroquinolone antibiotics who are systematically disregarded, and that’s a problem that has bothersome consequences and feedback loops as well, but it’s a topic for another post. This post is about people suffering in silence about the pain that Cipro, Levoquin, Avelox or Floxin has caused them.

People stay silent for a variety of reasons. There is a lot of shame associated with getting sick. People feel bad about what they can no longer do. They feel responsible for the role that they played in taking those pills, or insisting on them from their doctor, or administering them to their child, and they hide in shame. Also, a lot of the adverse effects of fluoroquinolones are CNS related, meaning that they can adversely effect many areas of mental health. People are notoriously ashamed and silent about mental health issues. It is easier to deal with anxiety, memory loss, depression, panic, etc. alone, in silence, than it is to speak up about what happened. After all, if you speak out about experiencing mental health issues, you run the risk of being labeled as crazy. Additionally, Fluoroquinolone toxicity takes its toll on every system in the body and therefore it is difficult to describe what is going wrong. How does one explain, to anyone, that EVERYTHING is going wrong? It’s too difficult and people sound and feel crazy, so they stay silent. When people ask their doctor about the possibility that the drug that they took caused the myriad of symptoms that they now experience, and the doctor denies that it’s possible that the drug that they prescribed could do what it has done, people assume that their doctor is right, or that they at least aren’t entitled to question their doctor’s expertise. After all, their doctor went to school for a long time and knows what they’re talking about… right? So people assume that they are wrong, their doctor is right, and they stay silent. There are a variety of other reasons why people stay silent about the travesty that is Fluoroquinolone Toxicity. All of them feed into the real risks of these drugs being under-recognized. The silence is, sadly, as much of an epidemic as the pain.

A friend of mine went to a Psychologist to help her to get through the mental and emotional trauma of being Floxed and she told me that, as she was telling the Psychologist her story, the Psychologist started to cry because a few years ago her (the Psychologist) knee swelled up and she experienced over-all tendon inflammation after taking Levoquin. When she asked her Doctor about it, her Doctor told her that the Levoquin couldn’t possibly be the cause of her pain. She knew differently but didn’t say anything. She recovered and didn’t think much of the period that she went through with painful, inflamed tendons much again. My friend’s experience and story validated the Psychologist’s pain, suffering and notion that Levoquin was the cause of her tendinitis, and it freed her to be able to acknowledge that she too was a victim of fluoroquinolone antibiotics. Before my friend visited her, the Psychologist thought that she was wrong, or the only one, or that her Doctor must know better, or that her story didn’t matter enough to scream about it – after all, she did recover – and she suffered in silence. She didn’t get the support that she deserved. She didn’t get the acknowledgment that she deserved. No one saw her pain and suffering because no one, including her, acknowledged that it existed.

I went out on a date a few months ago with a guy who was clearly Floxed but he didn’t know it until I told him my story. He had been treated with multiple types of antibiotics for a “chest infection” that was really acid reflux that was making him cough incessantly. He kept going back to his doctor for more and more powerful antibiotics because the mild antibiotics that he was given didn’t get rid of his cough – of course, because it wasn’t from an infection. His doctor eventually prescribed him Cipro and he had an adverse reaction to it. Most of his adverse reaction was mental (but he also lost his endurance and had an increased heart rate that he struggled to get down). He had a severe anxiety/panic attack and he thought that he was about to die. His sister flew to the U.S. from Sweden to be at his side because he thought he was dying. He lost his memory. He lost his composure and was barely able to do his job in software sales. He was clearly sick. But he stayed silent because he was ashamed of having mental issues. He never connected his sudden onset of mental health issues and the antibiotics that he took, and thus his doctor got to continue to think that he was a healthier than average person and that Cipro was a perfectly safe drug.

I have always talked about what was going on in my body and mind. Silence is not something that I have ever been afflicted with. I have always felt the need to be understood, to be recognized and for my pain to be acknowledged. I am lucky enough to have friends and family members who listen to me. Despite being a talker, I still felt like I lost my voice for a while. I felt like I couldn’t really explain what was going on. I felt like there was a wall between myself and those that I was trying to talk to. I think that feeling socially isolated is a symptom of being Floxed and that it’s really difficult to explain something like Floxing to people. It is ABSURD that a prescription antibiotic that is used all the time could cause my body and mind to explode like it did. I knew that what I was saying sounded absurd, and that people didn’t understand what was going on, so there was that barrier to my voice being heard. It didn’t stop me from yapping though. 🙂

I hope that all of you who are afflicted with silence start screaming about your reaction soon. It’s not okay that you were hurt by a prescription antibiotic. It’s not okay for these drugs to take away your ability to walk, your ability to think, your ability to speak, etc. I hope that you all gain your voice back, that we are all heard, and that this absurd situation starts to change.

 

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Fluoroquinolone Antibiotics and Nerve Damage/Malfunction

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This post about how fluoroquinolones are associated with Central, Peripheral and Autonomic Nervous System Damage was published on Hormones Matter on 09/09/2013.  

http://www.hormonesmatter.com/fluoroquinolone-antibiotics-associated-with-nervous-system-damage/

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Permanent

I really appreciate that the FDA has put the word “permanent” on the warning labels of fluoroquinolones.  “The nerve damage may be permanent” is now stated under the peripheral neuropathy section of the side-effects listed.  Permanent.  Physicians may take note; they can do permanent damage to their patients with these drugs.  It may make them think twice.  It may make them realize the severity of the adverse effects of fluoroquinolones.  They may see that they can do damage with these drugs that they can’t fix.  Permanent damage.

While it is wonderfully validating to see the words “The nerve damage may be permanent” on the updated label for Cipro, there’s a part of me that hates that word – permanent.  It’s a word that steals people’s hope.  It’s a word that feeds into fear, hopelessness and suicidal ideation. It’s a word of doom.

You are not doomed.  There is nothing about you that is permanent.  Nothing is permanently damaged.  Nothing is permanently perfect.  We are all in a state of flux, all the time.  Sure we’re all decaying a bit, it’s the nature of living things, but we are also growing and healing.  People recover from this.  They do.  I did.  Lots of other people have recovered too.  There are stories of hope and healing on this site.  Sure, it’s not a huge number of stories right now, but the site has only been up for a couple of months and, well, the people who have healed have moved on with their lives.  If I may be so audacious, I would say that MOST people recover, with time.  It’s a really long, rough, painful, scary road, but people get down it.  People get to the end.  They recover.  I hope that you can find the strength to believe that you will recover too.  If you can’t find that strength today, I hope that you can find it tomorrow.  Because this life is worth fighting for.  Not only your health, but your hope and your spirit are worth fighting for as well.

As someone said in one of the fluoroquinolone victim support group sites, “no side effect can be proven permanent until you’re dead.”  True.

So hang in there folks.  I know that it’s a trite thing to say, and I apologize for that, but I mean it.  Just take one breath at a time.  You can get through this.  Bayer and Johnson & Johnson may have kicked you, but they didn’t kill you.  You’re still here.  You can recover.  Have hope.  Try.  ‘Cause it’s only permanent if it kills you, and it didn’t.

 

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Is Fluoroquinolone Toxicity Rare?

I’ve come to hate the word rare. As in, “your reaction is rare,” or “those side-effects are rare,” or “it’s rare for someone to suffer from adverse effects from fluoroquinolones.” It’s such a dismissive thing to say. As if it’s okay for this to happen as long as it’s “rare.” As if it’s okay for a certain number of people to be collateral damage as long as the devastation that they experience is “rare.” As if it’s okay for there not to be any research or resources or justice or answers to questions because the problem is “rare.” As long as what you experience is labeled as “rare,” it doesn’t matter. Your experiences, your pain, your health, stops mattering. You become statistically insignificant.

It’s not a very nice thing to say to people. People who are trying to tell their stories. People who are trying to be heard. People who are trying to get answers, justice and cures. People who have been attacked and who need their pain and suffering to be acknowledged. Telling them that they are insignificant, rare, is just mean.

And is it true? Are adverse effects of fluoroquinolones really rare? How, I wonder, would anyone have a clue? Seeing as there is no recognized diagnosis of (name for) Fluoroquinolone Toxicity Syndrome / Floxing, most people who suffer from it are misdiagnosed. They are either told, as I was, that there is nothing detectable wrong. There was definitely something wrong with me, but “I don’t know” is the most benign wrong answer possible, so I’m thankful for it. Other people who have doctors who are less willing to admit that they don’t know are diagnosed with fibromyalgia, arthritis, chronic lyme disease, leaky gut syndrome, chronic fatigue syndrome, bipolar disorder, depression, anxiety, rheumatoid arthritis, M.S., lupus, sjogren’s disease, or, in children (shudder), autism or autism-like symptoms.  Plenty of people who are floxed end up with one of the diseases listed, and fluoroquinolones may (um did, but that’s a bold assertion when I have no proof) have even caused those diseases to emerge.  (All of the diseases listed are complex diseases with multiple causes – fluoroquinolones are NOT the only cause of them and they are not the only cause of symptoms like those of the diseases listed above.  I’m just saying that sometimes, possibly often, people who are suffering from Fluoroquinolone Toxicity Syndrome are misdiagnosed with those diseases, and for some of the autoimmune diseases, fluoroquinolones may contribute to them.)  So people who should have at least a partial diagnosis of Fluoroquinolone Toxicity Syndrome / Floxing / whatever it ends up being called, end up being put into a different disease category and everyone gets to remain willfully ignorant, thinking that adverse effects from Cipro, Levaquin and Avelox are “rare.”

The fact that adverse effects of fluoroquinolones are often delayed makes the connection between the cause (fluoroquinolone antibiotics) and effect (bomb in body and mind) difficult to see. Patients and doctors alike are failing to make the connection between fluoroquinolones and the symptoms that are the manifestation of an adverse reaction to them.

As far as I know, there has never been a study of fluoroquinolones that takes into account the delayed adverse reaction to them that many people experience. Another thing that I have never seen taken into consideration is the fact that there seems to be a threshold for fluoroquinolone tolerance. Some people react negatively to their first pill, but most people tolerate fluoroquinolones for a while (some people can take 5 pills, some can take 500 pills) then, once their threshold is reached, they have a severe adverse reaction. If neither delayed reactions nor thresholds (nor cumulative effects) are being studied, how in the world would anyone have a clue how often adverse reactions truly occur?

The less noticeable adverse effects of fluoroquinolones, effects like mild insomnia, memory loss, urgency of urination, painless muscle spasms, etc. (a list can be found here – https://floxiehope.com/2013/07/10/warning-signs/ ) can even be mis-attributed to aging, dehydration, etc. Though these effects are mild and nothing compared to the triggering of an autoimmune disease-like reaction like full-on floxing is, they’re still adverse effects and they’re still damage done to people by fluoroquinolones. I doubt that these effects are rare. They probably happen to most people who take fluoroquinolones. But they are rarely reported and rarely connected to fluoroquinolones, and thus, everyone gets to continue to think that adverse reactions are rare.

No one really knows how frequent adverse effects of fluoroquinolones are because no one is looking at the full picture and no one is asking the right questions.

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Of course, I’m a bit biased, but I see adverse effects of fluoroquinolones everywhere. I don’t have a large number of friends – I’m certainly not a “connector” – yet I have 4 friends (not including facebook friends) who have been adversely effected by a fluoroquionlone. I also went out on a date with a guy the other day who was telling me that he had a rash, an irregularly high heartbeat, loss of endurance, an anxiety attack and leaky gut syndrome after taking an antibiotic. I bet you a buck he was floxed.  He didn’t know, his doctor didn’t know, the FDA didn’t know and the pharmaceutical companies didn’t know, so everyone gets to go on thinking that his reaction didn’t happen, and the number of reported adverse reactions remains lower than the number of actual reactions.  A lot of people have been adversely effected by these drugs. Most of them recover, thank God. But suffering from any adverse effects from a drug when there are safe alternatives that will get rid of the infection, is wrong. And it isn’t RARE.

 

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Communicating With Doctors about Fluoroquinolone Toxicity

As soon as I realized that a pharmaceutical had hurt me and that there was nothing that doctors could do to cure or fix me, I stopped going to doctors. I figured that they could hurt me and they couldn’t help me, so I wasn’t going to consult with them any more. I was angry with the system that hurt me. I was angry with the doctors that prescribed these drugs. I was angry with the doctors who told me that my symptoms couldn’t possibly be from the Cipro that I took. I figured that they were wrong (they were, the Cipro caused all of my problems), that they didn’t know anything useful (I don’t know because I didn’t ask), and I opted out of the system.

I don’t think that my reaction was entirely unreasonable. The anger and bitterness probably weren’t helpful, but I don’t think that they were unwarranted. It made me pretty angry to get seriously damaged by a pharmaceutical then dismissed by doctors when I asked about the possibility that the Cipro was what was making my body go hay-wire (it was). Opting out of the system that caused me harm seemed like a fairly reasonable and rational decision, especially since alternative medicine, acupuncture and supplements, were helping me.

But now I’m starting to see that I didn’t help the system at all by opting out of it. None of my doctors have any clue what Cipro did to me. They have no idea that it caused me to barely be able to walk for several months. They have no idea that it sucked out all my energy so that I could barely stay awake through the day. They have no idea that it caused me to lose important parts of my mind – my memory, my reading comprehension, my ability to connect with other people, my ability to communicate verbally, etc. They have no idea that Cipro caused a syndrome in me that did severe damage to all systems of my body. They have no idea because I didn’t tell them.

So I can’t really blame them for not knowing, for not noticing my pain. I can’t blame them for not doing something about the travesty that is the system that let fluoroquinolones be a first line of defense for minor infections, if they don’t know about the consequences of their actions. I can’t blame them for incorrectly assessing the frequency and severity of adverse reactions to fluoroquinolones if a sizable portion of the population who has an adverse reaction to a fluoroquinolone does exactly what I did, opt out of the system and fail to communicate with them. They have no idea. And that’s partly my fault.

Even if I had felt inclined to continue to go to M.D.s for treatment, I suspect that it would have been an uphill battle. The system isn’t set up to recognize, or to treat, issues like Fluoroquinolone Toxicity Syndrome / Floxing. First off, “Floxing,” or even Fluoroquinolone Toxicity Syndrome, isn’t even in the doctors’ handbook of recognized diseases/syndromes/things. So, if it doesn’t have a NAME, it’s not going to be recognized. Second, it would have been a waste of everyone’s time and energy for me to keep going back to the doctor with each new symptom, and new ones kept popping up for a few months, just to let them know, when there is nothing that they could do about any of them. The Western medical system is set up to name and fix things. Naming diseases and fixing people is important, and I want both, but when neither are available really bad things tend to be done – labeling patients as difficult or crazy, or, worse, throwing random treatments at them with the hope that they’ll get better – though sometimes they get worse as a result of the treatments. I didn’t want either of those things so I didn’t go back to my doctor. Seeing as I’m largely recovered, I think that my strategy was a good one for my health. However, it kept doctors from noting what was going on with me and thus, it didn’t get put on their radar that change is necessary.

I should tell them. I should tell them my story. We should all tell our doctors our stories. Not to get an answer from them. They don’t have the answers. We should tell them just so they know. So that they can know about the devastating effects of the drugs that they prescribe. If they know, maybe they’ll change their actions. Maybe they won’t prescribe fluoroquinolones in inappropriate situations. Maybe they’ll recognize the symptoms of Fluoroquinolone Toxicity Syndrome / Floxing in someone else so they will at least know how to avoid doing more harm to that person (they can avoid NSAIDs, steroids and, of course, other fluorouqinolones in the future for that person).

As for how to do this, I think that Dr. Rob has some valuable advice in this post – http://www.prohealth.com/library/showarticle.cfm?libid=18247 . Approach the good ones like they’re humans, they are, and leave the jerks behind (they’re humans too, just not humans that you should deal with).

So, it’s now on my to-do list to respectfully and kindly talk to my doctor about what I went through and how she may avoid putting another person through similar pain. I wonder if Kaiser will waive the co-pay for an informational session where the information goes from patient to doctor. I doubt it. It’s worth asking though.

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Ciprodex – Poison Marketed to Children

Ciprodex Ear Drops

Ciprodex is an ear drop that is used in children, especially children under the age of 3, the main people who get ear infections, that contains Cipro, a fluoroquinolone antibiotic, and Dexamethasone, a steroid. Let me list the ways in which this is HORRIFYING:

  1. Fluoroquinolones are dangerous drugs. Their adverse effects include DESTRUCTION of all connective tissue throughout the body. This includes tendons, ligaments, fascia and cartilage. Destroying the connective tissue of a growing child is a REALLY BAD IDEA. Fluoroquinolones also adversely effect the nervous systems – central, peripheral, and autonomic nervous systems. Destroying a child’s central nervous system, its BRAIN, is also a REALLY BAD IDEA. A child’s brain is not fully developed and to damage it with chemicals is unconscionable. Fluoroquinolones are so dangerous that many have been removed from the market due to serious adverse reactions and safety concerns. The fluoroquinolones that have been removed from the market include gatifloxacin, repafloxacin, temafloxacin,trovafloxacin and afloxacin. Cipro (ciprofloxacin) may be formulated in a way that makes it slightly less strong, or, if you’re feeling cynical, it may be formulated in a way that adverse effects tend to be delayed, and thus it is not perceived as being as dangerous as other, recalled, fluoroquinolones, but it’s still REALLY DANGEROUS. Hell, it messed me up pretty severely, and I was a strong and healthy 32 year old. I can only imagine what it would do to a child. I shudder at the thought.
  2. Fluoroquinolones should NEVER be co-administered with a steroid. They are contraindicated with steriods. Yet Bayer, in all its glory and brilliance, decided that it would be a good idea to combine a fluoroquinolone and a steroid in a single medication then market it to children. Awesome. Steroids weaken tendons, fluoroquinolones weaken tendons, putting them together is a toxic cocktail. Steroids also intensify the toxicity syndrome that is “Floxing.”
  3. Because Ciprodex is an ear drop, it doesn’t carry the same warnings as orally administered Cipro. I’m sure that a drug that goes into the digestive tract is metabolized differently than a drug that goes into the body via the ear. However, I am also sure that people can be floxed by ear and eye drops because I’ve talked to people who have been poisoned that way. To take the warning labels off of ear and eye drops is absurd. The drugs are still going into the body. Eyes and ears aren’t disconnected from the rest of the body just because they’re not directly connected to the digestive tract. I’m not asking anyone to believe in homeopathy or to go to a holistic physician, but I am saying that it is crazy to think that drugs that go into the ear and/or the eye don’t go into the body. Ears and eyes actually are part of the body, not separate floating entities completely disconnected from the rest of the being. Yet the FDA treats them this way and doesn’t demand the same warning labels on ear and eye drops. So parents are completely uninformed of the dangers of Ciprodex when they administer it to their children.
  4. Again Ciprodex is specifically marketed to children – what is wrong with these people? And what is wrong with the FDA? Children, the most inherently vulnerable people in our society, the people who are depending completely on others to take care of them, are being endangered at the least and permanently damaged at the worst, by pharmaceutical companies and a medical system that isn’t looking out for them. This is disgusting.

Here is the package insert for Ciprodex – http://dailymed.nlm.nih.gov/dailymed/lookup.cfm?setid=0ed518de-4ae1-43d1-84ff-26872d9e6a0f . Some things to note in the insert are:

  1. The amount of Cipro in it is low. This is good. Seriously, thank God.
  2. It is approved for use in patients 6 months of age and older. This is appalling.
  3. CIPRODEX® Otic is contraindicated in patients with a history of hypersensitivity to ciprofloxacin, to other quinolones, or to any of the components in this medication.” So, if your baby starts having seizures, you may want to discontinue use of this drug because it turns out that your child now has a history of hypersensitivity to Cipro. Too bad they don’t mention that an adverse reaction isn’t reversible. And how, other than poisoning their children, are parents supposed to know whether or not their child has a history of hypersensitivity to these drugs?
  4. Serious acute hypersensitivity reactions may require immediate emergency treatment.” This implies that there is a treatment. There isn’t. If your child has an adverse reaction to this drug and you take him or her to the emergency room, he or she will likely be pumped full of steroids which will make him or her worse. Then the child will have connective tissue and nervous system issues for a while, possibly for the rest of his or her life. But sure, tell your doctor immediately if your child experiences a hypersensitive reaction. They won’t be able to do anything about it, but they may realize that they poisoned your child and may avoid doing it again in the future.
  5. If the infection is not improved after one week of treatment, cultures should be obtained to guide further treatment.” Cultures should be obtained before the administration of any antibiotic, period. Fluoroquinolones should not be used as a first line of defense against verified bacteria, period.
  6. The systemic administration of quinolones, including ciprofloxacin at doses much higher than given or absorbed by the otic route, has led to lesions or erosions of the cartilage in weight-bearing joints and other signs of arthropathy in immature animals of various species.” Yup. And I wouldn’t trust that the amount absorbed by the otic route is too small, especially seeing as everyone’s tolerance for fluoroquinolones seems to be different. Some people die after 2 pills, others take 90 before they have a reaction. Besides, the people who are testing these drugs are the ones selling them. Don’t trust the bastards.
  7. Guinea pigs dosed in the middle ear with CIPRODEX® Otic for one month exhibited no drug-related structural or functional changes of the cochlear hair cells and no lesions in the ossicles.” Well, it’s nice to know that their ears looked okay. Could they run though? Could they still find their way through a puzzle (or do whatever cognitive things guinea pigs can do?) How did their brains look? How did their tendons look? You don’t know because you weren’t looking? Oh…. I see.
  8. It is very important to use the ear drops for as long as the doctor has instructed, even if the symptoms improve.” It is very important to stop using fluoroquinolones as soon as possible after you start having an adverse reaction. Even after stopping administration of them, the adverse reaction can continue. Since we’re talking about children, it’s really important that you stop giving your children drugs that are poisoning them. Discontinue use immediately.
  9. Specific drug interaction studies have not been conducted with CIPRODEX® Otic.” I’ll tell you that NSAIDs and steroids trigger adverse reactions.
  10. Ciprofloxacin and corticosteroids, as a class, appear in (breast) milk following oral administration.” This is bad.
  11. No clinically relevant changes in hearing function were observed in 69 pediatric patients (age 4 to 12 years) treated with CIPRODEX® Otic and tested for audiometric parameters.” Your child will still be able to hear. That’s good. He or she may even be able to hear constant ringing (tinnitus), a common effect of fluoroquinolone toxicity. That’s bad.
  12. All of the adverse events listed are things involving the ear. Of course, adverse effects on the ear should be noted when studying ear drops, but the rest of the subject should also be noted. Of the 937 babies poisoned by Ciprodex, how many suffered from subsequent tendon pain? How many had cartilage, tendons, ligaments or fascia that were mal-formed? How many of these children subsequently read at a normal level? How many of these children displayed symptoms of autism? Could they run? Could the jump? Could they think? Could they concentrate? Did they have GI problems? ALL of these things are problems associated with fluoroquinolone toxicity, and if none of these questions were asked, then the researchers were LOOKING AT THE WRONG THINGS. THEY WERE ASKING THE WRONG QUESTIONS AND THE SAFETY AND EFFICACY OF THIS DRUG HAS NOT BEEN ESTABLISHED PROPERLY.

Even if all of the 937 children who were part of this study (side-note – don’t put your children in drug studies, just don’t) were fine, (and I doubt that is the case), effects of fluoroquinolones appear to be cumulative. So, even if these children didn’t react to these drugs the first time they were administered, they may react horribly to them when they get a fluoroquinolone in the future. A ticking time-bomb in their little body has been triggered, and it may get set off by future fluoroquinolone use, steroid use, NSAID use, or maybe even vaccines. (I’m not trying to vilify vaccines any more than I’m trying to vilify ibuprofen, the culprit is the fluoroquinolone, not the triggering toxin.)

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Ciprodex and plain Cipro ear drops are given to children constantly. A very good friend of mine brought her then 9-month old daughter to an emergency services clinic with a suspected ear infection. The doctor never cultured the bacteria in her ear, he simply prescribed her some Cipro ear drops. Thankfully I was with my friend when she went to pick up the drops and she never filled the prescription (because I flipped out). The infection went away on its own.

The following was recently posted in a Facebook group that I belong to – “My 20 month old grandson is visiting from GA. He had a follow-up appointment at Vanderbilt for his ear tubes. The physician prescribed Ciprodex Otic Suspension for an ear infection. This is a combination of Cipro and corticosterod given via the ear. The insert does not disclose all the potential side effects. The insert states there are other potential risk and if you have concerns get additional information from your health care provider (which we know how that goes). After watching my wife go from a normal life to a life with disabilities…..I am concerned. In my personal research, children are at high risk of floxing. Does anyone know of floxing via the ear drop forms of quinolone antibiotics?”

Children are being given this poison every day. A child has probably been given a dose of Ciprodex in the amount of time that it took you to read this post. I hope and pray that they are okay.  

 

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Is Our Meat Floxed?

My favorite theory about the pathology/cause of floxing (of course, fluoroquinolone use is the CAUSE of floxing, but not all people who use fluoroquinolones get floxed – something goes horribly wrong in the bodies of the people who do), is that a neurotoxin is produced by the damaged bacteria within the body and that neurotoxin is the actual cause of the health problems that Floxies experience. More information on this theory can be found on https://floxiehope.com/2013/06/20/test-post/ and at the bottom of this page.

This theory, that neurotoxins are produced when fluoroquinolones mess up the bacteria, makes me think about a lot of things. One of these things is our meat.

Fluoroquinolones are used rampantly in agriculture, even though there has been some regulation limiting their use. If fluoroquinolones cause the production of neurotoxins, could it be possible that these neurotoxins are in the flesh of the animals that are exposed to fluoroquinolones – the meat that we eat? If so, what are the health consequences of this to the humans who eat that meat?

I believe that meat is tested for antibiotics and other agriculturally utilized pharmaceuticals before it goes to market, but if the meat is actually contaminated with a neurotoxic byproduct of the pharmaceutical, as opposed to the pharmaceutical itself, then maybe the wrong thing is being tested for. Is our meat contaminated with neurotoxic byproducts of fluorquinolone antibiotics? I don’t know, but it’s something that is definitely worth looking into.

Admittedly, this line of thinking involves a lot of unproven jumps and assumptions, but I don’t think that I’m being completely unreasonable. The theories described below seem more than reasonable, they seem right, and I think that looking into the health consequences of eating meat that is from animals that have been floxed is something that we should do. Question everything. It’ll keep you safer and make you smarter.

There are many good reasons not to use fluoroquinolone antibiotics on livestock animals. Antibiotic resistance is becoming a bigger and bigger problem and the thought that we may be breeding antibiotic resistant bacteria in our feedlots is appalling. This problem, though not without controversy, is generally acknowledged and some regulation is being put into place to try to prevent an atrocity from happening. However, humans are slow to change the status quo unless there is an emergency and I doubt that real, meaningful regulation will come about until an antibiotic resistant bacteria is bred in feedlots and that bacteria infects people. Antibiotic use in livestock also enables ranchers to keep their animals in dirty, unsanitary, inhumane conditions – something that is also appalling. Even though I haven’t done a whole lot of research into the topic, I think that with the research that has been done, we can add potential contamination with neurotoxic byproducts to the list of reasons that antibiotics generally, and fluoroquinolones specifically, should not be used in livestock.

I like meat and I eat it, but I’ve tried to exclusively consume organic meat since I got floxed. I’m going to try harder now. I suggest that you do the same.

From https://floxiehope.com/2013/06/20/test-post/

Is a neurotoxin produced by the damaged/bad bacteria after exposure to fluoroquinolones (or the die-off of the “good” bacteria that keep the bad ones in check)?  There are several interesting things noted in Beyond Antibiotics by Michael Schmidt.  Dr. Schmidt points out that both tartaric acid and tricarbalyte are noxious compounds produced by bad gut bacteria when good gut bacteria in the gut are not available to keep them in check.  Tartaric acid “is a known poison of the energy system of mitochondria,” and tricarbalyte “binds to magnesium and may reduce the availability of dietary magnesium.”  (pages 28-29) Dr. Schmidt also says that antibiotics cause the production of clostridiam which is a known neurotoxin producing organism (p. 44). And, on page 47 he says, “Whever a CPY enzyme is blocked or slowed, its ability to detoxify other drugs can be impaired.”  My thought on this is that the fluoroquinolones slowed our CPY enzymes then the NSAIDs, steroids, other toxins in our system, did other damage – and maybe that’s why each of us have so many different symptoms.

Also, John Travis reported in Science News (July 2003;164) that research performed by John F. Prescott found that certain antibiotics, such as the fluoroquinolones, the class of antibiotics that includes the name-brands and generic brands of Levaquin[R], Cipro[R], Tequin[R], and Avelox[R], actually are known to trigger a type of virus called bacteriophages (viruses that can infect bacteria) to change the genetic sequencing of the bacteria, causing the bacterium they have infected to start producing toxins. These viruses can act as genetic delivery vans, invading bacteria, such as spirochetes, often lying dormant, until activated by a change in the host (your body’s) environment. Once activated, these viruses insert their toxin-generating genes into the bacterial chromosomes. These viruses can turn basically harmless bacterium into killers through this genetic sequencing of toxins (Travis 2003).  Not only are these toxins released through bacteria die-off and not only can antibiotics actually increase the production of the toxins, but these viruses can cause the bacteria to rupture, spilling their toxins into the body (Waldor 2004).  http://www.benbrew.com/lb/lyme5.pdf

* I haven’t had the time to do a whole lot of research into this theory, so if anyone has any articles about it, please forward them on to me.

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Taking Supplements After Fluoroquinolone Toxicity

Supplements After Fluoroquinolone Poisoning

“I am not a doctor and none of the advice contained in this site should be seen as a replacement for the advice of a doctor or other medical professional. Please be careful with all supplements and treatments that you self-administer. Trusted supervision by a medical professional is a good idea.”

That’s the disclaimer that I have up on the Stories page of Floxie Hope. I have no idea how solid it is as a disclaimer. I’m not a lawyer either. Please don’t hurt yourself or sue me.

The disclaimer is understood. Sure.  Fine. We all know that each individual’s experience is different, their biochemistry is different, no one on here is doing a controlled scientific experiment because it’s IMPOSSIBLE to do a controlled scientific experiment on yourself, and we even know that we should probably avoid getting medical advice on the internet.

Fine.

But can you blame us?  What are we supposed to do? The doctors, the people who prescribed us a poison that MESSED US UP, could chat with us, but most Floxies are understandably wary of listening to their doctors. Doctors also have no answers. They have no advice, no course of action for us to take, and no cure. I don’t blame them for not having answers.  They just don’t know. They have no idea what is going wrong in our bodies or how to fix it. It would be nice if they tried to understand, explored different theories, answered the questions in my “What is going on???” post (https://floxiehope.com/2013/06/20/test-post/) compiled a database of what helps and what hurts, looked for a cure, etc. But seeing as we’re fighting to even get our ailments acknowledged and linked to fluoroquinolones, it’s pretty far-fetched to think that meaningful research into a cure is going to be done any time soon.

So we seek answers on the internet. We try different supplements that have helped other people. Luckily, unlike pharmaceuticals, supplements have an excellent safety record. But the combinations that any of us try may hurt us. We may inadvertently harm ourselves while trying to heal ourselves.  We don’t intend for that to happen, but it may.

I’ve had two minor mishaps with supplements. I took a niacin supplement and got a “flush” that scared the $*&% out of me. I recently started taking Magnesium Malate / Malic Acid (same thing, two names). It’s given me a nice energy boost, but it’s made it difficult to sleep.  Having a little more energy is not even close to worth insomnia – for me. Neither of these mishaps caused me any real harm. They were learning experiences. Taking Cipro was also a learning experience, but a lot of harm was done and the lessons learned came at a ridiculously high price.

I think that most of the supplements that I take help me in one way or another. I wouldn’t take them if I didn’t think that they were beneficial. Yeah, I see the benefit in each of them, but my attachment to them and the money that I spend on them isn’t completely healthy. I spend way too much money on supplements and I am only sure of the benefits of some of them. Iron, magnesium and chlorophyll help me immensely. I eat beets and brewer’s yeast daily and I think that something in them (probably the uridine) is helpful. What helped me may not help you so only take that for what it’s worth, not a lot, only a teensy bit more than your doctor’s advice, seeing as he/she knows nothing about this. (I say that tongue-in-cheek – but don’t take my advice as medical advice, seriously, don’t.)

It would be really, really, really nice if our doctors could acknowledge what happened to us, note that they don’t know how to fix us, and explore alternative treatments with us.  Hahahahahaha, I know, pipe dream, hahahahahahaha – I crack myself up.

I’m sure that it’s frustrating for doctors to hear from patients, “I heard about this remedy on the internet,” but if they can’t give any answers, seriously, what are we supposed to do?

I see the people who look for answers to their ailments on the internet as hopeful. We HOPE that there is something out there that can help us, that can cure us. We hope that someone else has found the magic combination of supplements and diet that will lift our brain-fog and cure our connective tissues. I don’t care if this hope is entirely false, hope is a good thing. I hope that the stories of hope and healing in this web site are helpful to you and that what worked for others works for you as well. Please don’t hurt yourself with supplements or diet, and especially don’t get hurt with pharmaceuticals again. And as always, have hope.

 

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Warning Signs of Fluoroquinolone Toxicity

Almost every time I mention how Cipro messed me up, I get the response, “Oh yeah, I’ve taken that – it doesn’t affect me.”  To which I respond, “I took it several times before I reacted to it too. My body went completely hay-wire the second time I took Cipro. Don’t take it again.”

Adverse reactions to fluoroquinolones aren’t allergic reactions, they’re something else. The pathology of adverse reactions to fluoroquinolones is unknown – to anyone (or, if someone knows, they’re not publishing research papers about it). My guesses to the pathology can be found at https://floxiehope.com/2013/06/20/what-is-fluoroquinolone-toxicity/.

Unlike allergic reactions, adverse reactions to fluoroquinolones often occur long after the fluoroquinolone use has stopped. Antihistamines do nothing to stop an adverse reaction to a fluoroquinolone (though they may be able to help with some of the inflammation symptoms and they don’t seem to hurt most Floxies).

Though some people react to their first dose of a fluoroquinolone, many don’t, which leads them to falsely believe that these drugs are safe and that they won’t react to them in the future. Unfortunately, an adverse reaction to a fluoroquinolone can occur even if (maybe especially if – because there is (anecdotal) evidence that fluoroquinolones accumulate in the body and that there is a “tipping point” at which the body overloads) they have been taken with no adverse reaction in the past.

Looking back, I had some of these warning signs after I took Cipro the first time, in 2010. My eyelid twitched and I developed strange, but passing, abdominal cramping.  I experienced a “weak bladder” that I attributed to genetics and age. I had itchy legs at times and just thought it was dry skin. I didn’t connect any of these things to the prescription antibiotics that I took to treat a urinary tract infection.

If I had connected those symptoms to the fluoroquinolones, I may have been able to avoid taking Cipro again, and I may have avoided the pain and suffering that I went through starting in December, 2011.  (https://floxiehope.com/lisas-story/). I hope that this list of minor symptoms serves as a warning to you.  Please don’t take any fluoroquinolone antibiotics no matter what, but especially if you are experiencing any of the following, heed your body’s warnings and stay away from these drugs!

What FQ can do (HINTS AND CLUES THAT MIGHT SAVE YOUR LIFE)

Perhaps you have taken quinolones in the past and you think that they worked well and that you did not react negatively to them. Check the following subtle symptoms of the beginning stages of a quinolone intoxication from an earlier treatment and the normal interpretations that people make of them.

* You had a strange bout of tendinitis, for instance in the outer tip of the hip, normally diagnosed as trochanteric bursitis caused by tight belts or resting on you side at night. The same applies to other areas of the body, like the elbow (epicondylitis) diagnosed as an overuse of your tennis racquet or gardening practices, but you remember that you had never had it before.

* It takes you longer to recover after exercise. It is not alarming and you have not paid much attention to it.

* You sleep worse than before; it seems normal as you have a lot of pressure at work.

* From time to time you have some small throbbing pains in different parts of the body. They last only for a few seconds, so there is nothing to worry about it.

* It is strange- but you have occasional twitching in an eyelid, or any other part of the body. It is not painful.

* Some nights you feel some mild itching migrating along your body. One brief itch here, and another there. It is more intense in the scrotum or groin. Instead of identifying it as a peripheral neuropathy, you conclude that your clothes, your perspiration or the new brand of soap that is more irritating must be causing it.

* You feel some stiffness, and your range of movement is not as full as before, especially in one or both legs, but it is normal because you are getting older.

* You do not tolerate coffee as well as before. Now you have to reduce the amount of coffee that you used to drink.

* Your memory is not as good as it used to be. The cause may be too many things to think about and too much stress. And you are no longer a young person.

* There is an urge to urinate when the bladder is partially full. When you feel the need to urinate you have to rush for the toilet. Most urologists think that it is due to a dysfunction associated with a benign enlarged prostate but in reality it is a neurological deficit caused by the prescriptions of quinolones that they gave you.

* You cannot flex fully, or strongly, your big toe (one or both), or sustain the flexion for more than a few seconds. This is an indication that your large nerves (anterior tibialis) have started to fail due to the toxicity. This sign is a strong warning that your body will not tolerate more quinolones.

* Sometimes, you have nightmares while falling asleep that scare you. How strange you think. They are toxic panic attacks that reflect toxic damage to your brain.

If you have experienced some of these symptoms since you took your first quinolone, perhaps you have reached your first threshold of tolerance, that -once surpassed- can result in the destruction of your life soon thereafter if you take more quinolones.

 

 

Wish List

Here is a list of things I want. I figure that it can’t hurt to state my wishes. People generally try to give you what you want, if you ask for it. So…. hereyago –

  • I want them (the doctors, pharmacists, etc.) to stop giving fluoroquinolones to children.
  • I want for fluoroquinolones to only be prescribed/administered after all other viable options for cures of infections have been exhausted.
  • I want the FDA to do independent investigations and studies on every one of the top 10 drugs that are complained about in their adverse event reporting system.
  • I want there to be a process through which accurate and complete information about all of the possible risks associated with a drug are communicated to patients in a way that ensures that true, honest INFORMED CONSENT is given prior to the administering of any prescription drug.
  • I want pharmacists to truly be gatekeepers and to refuse to fill prescriptions that are unnecessarily dangerous.
  • I want doctors to listen to people other than other doctors.
  • I want nurses to speak up when they see something in the system that is wrong.
  • I want all Floxies, and Floxie friends and allies, to rise up and fight these pharmaceutical companies that have hurt us, who have disregarded our worth as humans so that they can have profits, and I want us to bring them down to their knees, to force them to change.
  • I want everyone who is suffering from an adverse reaction to a fluoroquinolone to find healing, peace, hope and happiness.
  • I want a cure.
  • I want to know what makes some people more susceptible to being floxed than others.
  • I want floxing to be acknowledged – by everyone.
  • I want for the attitude of – if it can’t be tested for, and if there isn’t a cure, then the problem doesn’t exist – to go away.
  • I want all of the victims of fluoroquinolone toxicity to win lawsuits against Bayer and Johnson & Johnson and for all of us to be compensated for the damage that they have caused us.
  • I want studies to be done establishing whether or not there is a connection between fluoroquinolone use and fibromyalgia, chronic lyme disease, chronic fatigue syndrome / Myalgic Encephalomyelitis, Desert War Syndrome, anxiety, depression, suicide, plantar fascitis, autism, leaky gut syndrome, rheumatoid arthritis, M.S., Lupus, carpal tunnel syndrome, etc. Then, once a connection is established, I want a study to be done that firmly establishes a causal relationship between fluoroquinolone use and fluoroquinolone toxicity (in all its various incarnations and misdiagnoses) to be done.
  • I want the stock of Bayer and Johnson & Johnson to crash.
  • I want this anger that I feel to serve a purpose for both me personally and for humanity generally.
  • I want an article in The New Yorker to be written about fluoroquinolone toxicity.
  • I want to do a TED talk about floxing.
  • I want to make a living advocating on behalf of victims of the pharmaceutical industry.
  • I want the pharmaceutical industry to have a lot fewer victims – zeroish.
  • I want an apology letter from Bayer.
  • I want to know the pathology by which these drugs messed me (and others) up.
  • I want pharmaceutical companies to have a lot less power.
  • I want people to take side-effects of all drugs seriously.
  • I want everyone to treat everyone else with compassion, caring, respect and love. I want everyone to treat everyone else as if their health matters – because it does. I especially want doctors, nurses and pharmacists to treat everyone that they see as if they matter – because they do – regardless of their disease, their mental state, their hygiene, etc.
  • I want there to be a societal shift away from thinking that it’s okay for people to be sacrificed in exchange for money.
  • I want universal sympathy for those who are suffering.
  • I want this blog to go viral.
  • I want my mind fully back – my memory, my reading comprehension, my concentration, my ability to connect with others – I want it to be back completely.
  • I want a boyfriend/husband, good sex and a baby – in approximately that order.
  • I want a fully loaded, brand new Tesla.

Okay, so those last four may be a bit selfish. Seeing as I’m able to live a normal/good life, while other people who have been Floxed are bed-ridden for years and only want a normal/good life, I feel a little bad about asking for those things. But I do want them… 🙂

 

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The Shame of a Pharmaceutical Induced Illness

I have noticed some shame associated with floxing.  I have felt plenty of shame.  I haven’t wanted people to know that I was sick.  I haven’t wanted people to know how I got sick.  I haven’t wanted people to know that I’m dwelling on being sick or that I’m participating in support groups.  I certainly have felt some shame associated with having mental health issues – a lovely part of floxing.  I have felt shame at how I dealt with getting sick – badly – something that I can at least partly attribute to my mental health issues that were caused by getting floxed.  I have felt shame about the fact that I can’t do the things that I used to be able to do.  I have felt shame about my anger.  I have felt shame about not getting better more quickly (and I am a fast recovering Floxie).  I have felt shame over the fact that I’ve changed, that I’m just different now.   Lots and lots of stupid shame.  I have noticed that other people seem to feel shame about being floxed too.  They use a pseudonym when participating in the support groups, or they ask for things not to be shared with their friends or family members.  Shame, it appears, is part of being Floxed, for many people.

I wonder where this shame came from.  For me, in some cases it was justified.  I really did deal horribly with getting sick.  I was anxious, had psychotic thoughts and sought validation of my sickness and thoughts of my impending death.  My family was worried – justifiably.  And maybe it’s okay to feel a little ashamed of the fact that I’ve dwelled on being sick.  It’s not healthy to have a sickness form your identity.  More importantly, it’s not helpful.  But I really shouldn’t have been ashamed of getting sick, or any of my symptoms.  It’s not my fault.  And the fact that you got sick is not your fault.  And I shouldn’t have felt ashamed at the pace at which I recovered.  My body, mind and spirit healed as fast as they could.  Yours will too.

Shame, I think, ultimately stems from fear that you won’t be loved.  That you won’t be loved as a sick person.  That you won’t be loved as a person who can’t run, or play football, or dance, or whatever.  That you won’t be loved as an anxious person.  That you won’t be loved as a person who isn’t as smart as you used to be.  That you won’t be loved as a tired person.  That you won’t be loved as a Floxie.  So you hide your sickness, your anger, your pain, and you feel ashamed.

I’m not sure what to say to any of you who can empathize with this post, other than stop it.  Stop feeling ashamed.  Stop hiding.  Stop being afraid.  And you may just find that you are loved just the way you are, busted tendons and all.

You are sick.  You are not broken.  You are not less.  You have nothing to be ashamed of.  You have no reason to hide.  You are loved.  Even if you are sick and scared and can’t move or think, you are loved.  You are loved by your friends and family.  Even if you don’t feel the love from them, don’t believe the love from them, you are still loved because love is within you.  You are loved.  You just are.

 

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Fixing Fluoroquinolone Toxicity is IMPORTANT!

Your health is important.  Fight for it.  Because it matters.

Your voice is important.  Scream for justice.  Because it matters.

Your life is important.  Live life like it’s important.  Because it is.

Showing others that their life matters is important.  Because it does.

Doing something, anything, and I’m honestly not sure what direction to go, about the problems associated with fluoroquinolones, is IMPORTANT.  It’s not okay that any of us were hurt by a prescription antibiotic.  There is nothing okay about that.  We are not collateral damage, we are not small numbers (of people) (of people is in parentheses because it barely matters to some – we’re numbers ) who are adversely effected by an otherwise good drug – we’re PEOPLE whose lives matter.  And it’s important that we scream and let the people and the system that is disregarding us know that WE MATTER!  It’s important for us to change the medical (and maybe the American, and maybe the world) culture that views it as okay to treat people as if they don’t matter, as if they’re collateral damage.  It’s really important.

There are children, even babies, who are given fluoroquinolones – typically in the form of ear and eye drops to treat ear infections and pink-eye.  It is our biological and moral imperative to protect our children.  And by our children, I don’t just mean our biological children, I mean all children.  IT IS REALLY IMPORTANT THAT WE PROTECT CHILDREN FROM THESE DRUGS!  The knowledge that fluoroquinolones are contraindicated in the pediatric population is as easy to access as a Wikipedia article, yet kids, innocent babies that are depending on us to protect them, are being given these drugs because their doctors are not heeding the warnings.  We MUST protect the children.  We must.  Because it’s really, really, really IMPORTANT.

In prescribing a fluoroquinolone in a situation that was not life threatening, and where other, safer drug alternatives were available, our doctors disregarded their Hippocratic Oath.  THE HIPPOCRATIC OATH IS IMPORTANT.  We need to scream at our doctors, nurses, pharmacists, etc. until they start following their Hippocratic Oath again.  It’s the moral basis of our medical system, or at least it should be, and it’s really, really important.

Another basis of our medical system that has been lost is INFORMED CONSENT.  It’s also quite important.  When drugs have dangerous, and sometimes permanent, side effects, as is the case with fluoroquinolones, it’s really, really important that informed consent be obtained before the drug is prescribed.  This rarely happens.  Patients are prescribed what they assume is a benign antibiotic.  They probably don’t even think about the side effects.  It’s an antibiotic, people take antibiotics all the time.  How could an antibiotic be harmful?  The sheet listing the side effects is included in the baggie when the prescription is filled, but the pharmacist doesn’t take the time to go over the side effects.  No one ever says, “This can damage your CENTRAL NERVOUS SYSTEM” or “This may permanently weaken all of the connective tissues in your body to the point where you become bed-ridden” or any number of warnings that can describe the horror of fluoroquinolone toxicity.  It is really important that a protocol be established when prescribing and filling prescriptions for fluoroquinolones.  All gatekeepers, at all steps in the process, should be informing patients of the possible consequences of taking these drugs.  To not obtain real informed consent is WRONG.

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It is important for side effects to be relevant.  It is important that doctors, nurses, pharmacists and especially patients know the RISKS associated with every drug.  Everyone involved in the system, including the patients, are guilty of disregarding warnings of side-effects.  Warnings are disregarded because they’re seen as arbitrary and unimportant.  They’re seen as arbitrary and unimportant because the FDA puts one-size-fits-all rules around what is said on drug packaging instead of adequately communicating REAL RISKS of each and every drug to doctors and patients alike.  If warnings are seen as arbitrary, if they’re not seen as real, they will not be heeded and people will get hurt.  It’s important that proper information be given to patients and that they know the risks associated with every drug that we put into our body.

The system let us down.  It’s important that we try to fix it so that it doesn’t let other people down.

Sometimes I wonder if fighting Bayer and Johnson & Johnson is possible.  I know that it is the right thing for me to do, but I get tired.  Fear takes over.  I wonder if I’m getting stuck in the past and stuck in a time in my life when I was sick, when I’m largely recovered, and that’s not a healthy thing to do.  Winning is borderline unimaginable.  Bayer and Johnson & Johnson are huge, powerful and have resources beyond my comprehension.  But then I think, who am I not to fight?  Not that many people see that there are some REALLY BIG PROBLEMS in the medical system, but I do, because of what I’ve been through, so I should take this (unwanted) gift of insight and use it – to scream.  Injustice is being done, people are being hurt and the system needs to be fixed.  So I will scream.  I will find a way to scream.  This blog is a start (maybe it’ll go viral – you never know (yes, that means share this post)), but bigger, better, louder ways of screaming are possible and I will do my best to find them.  BECAUSE BABIES ARE BEING POISONED.  Until they stop giving Cipro ear drops to 1-year-olds, I will scream – because it’s IMPORTANT to keep babies from being poisoned.  The fact that that needs to be said means that we live in a crazy world.  Let’s try to make it a little more sane.

 

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What is Fluoroquinolone Toxicity???

Cipro Molecular Structure

What is the pathology and what is the cause of floxing???  I’ve jumbled up theories of cause and pathology in the following list:

Is it an autoimmune disease/reaction?  ‘Cause that makes sense.   Many of the symptoms are similar to those of known autoimmune diseases like Rheumatoid Arthritis, Multiple Sclerosis or Lupus.  The connective tissue, tendons, ligaments, fascia, etc. of Floxies is being attacked.  If it’s being attacked by the immune system, well, that’s an autoimmune disease.  Which leads me to – AN ANTIBIOTIC TRIGGERED AN AUTO-IMMUNE REACTION – ARE YOU EFFING SERIOUS???  But it may not be….

Is it a serum sickness?  ‘Cause that makes sense.   My uncle who is an orthopedic surgeon thinks that it is.  This article describes floxing as a serum sickness – http://www.ncbi.nlm.nih.gov/pmc/articles/PMC171716/

Is it a toxic reaction?  ‘Cause that makes sense.  A drug is a toxin, right?  So if we get it out of our systems, we’ll be fine, right?  Unfortunately, this, the simplest of explanations, is the easiest to dismiss.  If it was a toxic reaction, people wouldn’t have delayed reactions.  When I went to the doctor, two weeks after I finished taking Cipro, and asked her if my symptoms had anything to do with the Cipro, she said no because (she didn’t know any better and) the Cipro should have been out of my system by then.  She’s probably right.  The Cipro had been metabolized.  But while it was there, it did something horrible to every cell in my body.  Maybe there are lingering pockets of toxins that we can just clean up and be cured…. But I don’t think so.

Is it an inhibition of the CYP1A2 enzyme?  ‘Cause that makes sense.  Fluoroquinolones inhibit the CYP1A2 enzyme in the liver, according to http://www.pharmacytimes.com/publications/issue/2007/2007-11/2007-11-8279.  Cures include smoking tobacco and eating broccoli.  You don’t want to start smoking, I wouldn’t/don’t…. But if it will enable you to walk, well, I can’t blame you.

Is it mitochondrial damage?  The general consensus among Floxies is that their mitochondria is damaged.  Another Floxie blog goes into this theory – http://www.floxedbylevaquin.com/p/mitochondrial-disease.html.  This may be an entirely false line of logic seeing as cellular energy and how energetic you feel are different, but mitochondrial damage may explain the exhaustion that Floxies feel.  Harvard researchers seem to be on this track – http://www.worldpharmanews.com/research/2481-dodging-antibiotic-side-effects

Is it dna damage?  Fluoroquinolones “prevent bacterial DNA from unwinding and duplicating” (according to http://en.wikipedia.org/wiki/Fluoroquinolone).  Do they also prevent our DNA from unwinding and duplicating?

Is it an inability to absorb magnesium and other minerals?  Given that magnesium and other mineral supplements are the only supplements that seem to reliably help most Floxies, and that many floxing symptoms are similar to that of magnesium deficiency this explanation seems pretty likely.  Unfortunately, popping a magnesium pill every day doesn’t seem to fix the problem.  Also, according to “Musculoskeletal Complications of Fluoroquinolones: Guidelines and Precautions for Usage in the Athletic Population” by Doctors Hall, Finnoff and Smith (do I have to site it correctly on a blog?), “Results of studies have shown that magnesium-deficient diets are capable of producing cartilage changes similar to that caused by fluoroquinolone exposure in both canines and rats, and dietary magnesium supplementation was able to reduce the histologic changes in rats exposed to fluoroquinolones.”  More information regarding the relationship between floxing and magnesium can be found in the article which can be found in Musculoskeletal Medicine, Vol. 3, pages 132-142, February 2011, published by the American Academy of Physical Medicine and Rehabilitation.  Email me for a copy. Also, here is a list of drugs that deplete magnesium from the body.  Cipro and Levquin are on it –  http://www.jigsawhealth.com/resources/drug-muggers-suzy-cohen-magnesium

Is it a methylation issue / MTHFR gene mutation?  A lot of Floxies have been tested for the MTHFR gene mutation and all who have tested and reported back have had the mutation.  I honestly don’t know enough about this line of thinking to comment much on it.  Here’s some info – http://www.methyl-life.com/index.html.

Is it something to do with blood? Iron, chlorophyll and beets are all supposed to help production of red blood cells, and those are the things that help me the most.  Maybe our blood doesn’t carry oxygen as well as it did.  Why/how did fluoroquinolones effect my blood’s ability to carry oxygen?  I have no idea.  I don’t even know that the above statement is true.  I do know that blood tonics such as iron, chlorophyll and beets help me though.

Is it something that inhibits our absorbtion of uridine?  Beets make me feel better, and I’ve been having Brewer’s Yeast daily for about a year.  Maybe the uridine in those things is helpful.  http://www.spanimax.com/index.php/omega-3-and-uridine

Is it something hormonal?  I know that my symptoms get significantly worse just before my period and during my period.  Hormones have some effect on floxing – I just don’t know what it is.  Hormones may explain cycling too.

Is it something going hay-wire in our Gaba receptors?  Dr. Flockhart, a doctor who has seen many Floxies, believes that floxing causes interference with the Gaba receptors throughout our brains and bodies.

Is a neurotoxin produced by the damaged/bad bacteria after exposure to fluoroquinolones (or the die-off of the “good” bacteria that keep the bad ones in check)?  There are several interesting things noted in Beyond Antibiotics by Michael Schmidt.  Dr. Schmidt points out that both tartaric acid and tricarbalyte are noxious compounds produced by bad gut bacteria when good gut bacteria in the gut are not available to keep them in check.  Tartaric acid “is a known poison of the energy system of mitochondria,” and tricarbalyte “binds to magnesium and may reduce the availability of dietary magnesium.”  (pages 28-29) Dr. Schmidt also says that antibiotics cause the production of clostridiam which is a known neurotoxin producing organism (p. 44). And, on page 47 he says, “Whever a CPY enzyme is blocked or slowed, its ability to detoxify other drugs can be impaired.”  My thought on this is that the fluoroquinolones slowed our CPY enzymes then the NSAIDs, steroids, other toxins in our system, did other damage – and maybe that’s why each of us have so many different symptoms.

Also, John Travis reported in Science News (July 2003;164) that research performed by John F. Prescott found that certain antibiotics, such as the fluoroquinolones, the class of antibiotics that includes the name-brands and generic brands of Levaquin[R], Cipro[R], Tequin[R], and Avelox[R], actually are known to trigger a type of virus called bacteriophages (viruses that can infect bacteria) to change the genetic sequencing of the bacteria, causing the bacterium they have infected to start producing toxins. These viruses can act as genetic delivery vans, invading bacteria, such as spirochetes, often lying dormant, until activated by a change in the host (your body’s) environment. Once activated, these viruses insert their toxin-generating genes into the bacterial chromosomes. These viruses can turn basically harmless bacterium into killers through this genetic sequencing of toxins (Travis 2003).  Not only are these toxins released through bacteria die-off and not only can antibiotics actually increase the production of the toxins, but these viruses can cause the bacteria to rupture, spilling their toxins into the body (Waldor 2004).  http://www.benbrew.com/lb/lyme5.pdf

Did we have something in our system that “supercharged” the fluoroquinolone antibiotics?  Maybe we had trace amounts of silver in our system that made the FQs many times stronger – http://www.scientificamerican.com/article.cfm?id=silver-makes-antibiotics-thousands-of-times-more-effective.  Or, maybe we had some grapefruit juice in our system and it produced that enzyme that kept us from metabolizing the drugs.

FQs are topoisomerase inhibitors and that the primary cause of our issues is likely DNA and mtDNA damage from massive transcription errors as a result of the chemical inhibition of proper cellular replication. That is the effect of a topoisomerase inhibitor, after all. They simply affect both prokaryotic AND eukaryotic DNA, despite what the literature states.  Recent research has proven this about FQs. That is why you get the delayed effect. It takes weeks to months for those damaged cells to replicate.
http://biology.about.com/od/cellanatomy/a/eukaryprokarycells.htm

Further, “FQs are currently being investigated for their chemotherapeutic properties. This research would not be possible if FQs didn’t affect eukaryotic cells.  FQs damage DNA by via inhibition of topoisomerase enzymes. This causes the DNA to not unwind, replicate, and then rewind back into the double helix structure correctly. This introduces transcription errors into the DNA itself. The body then recognizes these errors and attacks. This process should be over in a relatively short period of time. Unfortunately, I also think FQs alter the DNA of long lasting immune cells (killler B and T cells for example) which normally remain in the body for years or decades. I think once this happens, the body then develops the autoimmune issues. Also, it is a fact that once you cause the DNA and mtDNA damage, then you see a huge spike in the amount of ROS in the body. There was a study done of Indian men given Cipro for UTIs that proved that. What would you expect the body to do if you damage the ability of the mito to efficiently turn food into energy? You would get an increase in the amount of reactive oxygen species causing a cascade of cellular damage.  Also, it is well known that the human body would simply fall apart without many types of bacteria. Now what if you introduce a chemical into the body that destroys and/or causes mutations in the DNA of said bacteria? I think all of what I previously stated combines to cause our issues.”

Did Fluoroquinolones cause us to become Histamine Intolerant or to have excess histamine?  Here are the ways that this makes sense.  First, drugs can inhibit the enzymes that keep histamine levels in check.  Fluoroquinolones aren’t listed as drugs that can do so, but NSAIDs, one category of drugs that can trigger a reaction to Fluoroquinolones, are – http://healthypixels.com/?p=1044.  Second, “Histamine is versatile–it helps to regulate body functions as diverse as digestion, sleep, sexual function, blood pressure, and brain function.  How does this one molecule do so many different things?  The secret to histamine’s multi-faceted nature lies in which type of cell and which type of receptor it binds to.  For example, when histamine binds to special cells in the stomach called parietal cells, they respond by producing stomach acid.  When histamine binds to receptors on the surface of blood vessel cells, blood vessels dilate, dropping blood pressure. Small vessels called capillaries become leaky and fluids ooze out of them, which can lead to runny nose, watery eyes, and puffy skin/fluid retention.  In the brain, histamine acts as a neurotransmitter, carrying chemical messages between nerve cells.” (from http://diagnosisdiet.com/histamine-intolerance/)  Also, estrogen and histamine reinforce each other, which may explain why menstruating women have flare-ups of their floxing symptoms when they experience PMS.  BUT, histamine doesn’t adequately explain a lot of other things.  First, Fluoroquinolone Toxicity is NOT an allergic reaction, at least not in the sense that we think of allergic reactions, with an immediate, severe reaction that can include anaphylactic shock and ceasing of the reaction when exposure to the allergen has stopped and an antihistamine is administered.  Adverse reactions to fluoroquinolones can begin weeks or even months after exposure to the drug has stopped; after it SHOULD be fully metabolized and out of the body.  Also, antihistamine drugs like Benadryl, Claratin and Zyrtek don’t seem to do much for those who are suffering from Fluoroquinolone Toxicity.

Do fluoroquinolones damage the myelin sheath that protects nerves?  Fluoroquinolones damage or disrupt the Central Nervous System, the Peripheral Nervous System and the Autonomic Nervous System.  This leads me to believe that they damage or disrupt nerves over-all.  Perhaps the myelin sheath that protects nerves is attacked by fluoroquinolones.

Do fluoroquinolones cause a massive amount of oxidative stress on the body and does that oxidative stress cause the damage?  A 2011 study published in the Journal of Young Pharmacists found that, “There is significant and gradual elevation of lipid peroxide levels in patients on ciprofloxacin and levofloxacin.”  They also found that “There was substantial depletion in both SOD (superoxide dismutase, “a free radical scavenging enzyme”) and glutathione levels” and that “On the 5th day of treatment, plasma antioxidant status decreased by 77.6%, 50.5% (and) 7.56% for ciprofloxacin, levofloxacin and gatifloxacin respectively.” The study also notes that administration of fluoroquinolones leads to a marked increase in the formation of Reactive Oxygen Species (ROS) and that “reactive free radicals overwhelms the antioxidant defence, lipid peroxidation of the cell membrane occurs. This causes disturbances in cell integrity leading to cell damage/death.”

All of these theories make sense and it would be really nice to know which one is correct. Basically, what the hell is going on in our bodies?  Why are we falling apart?  Why do some people get better and others don’t?  Why do FQs effect some people and not others?  It’s all so confusing and frustrating.  If some research on where to even start could be done… that would be helpful.

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