He Died
He died… four months after my November 2015 post… basically, I lost heart… and trying to keep this blog up became, quite suddenly, a huge chore. I know the problems still exist. A friend just asked me for some old research on it and she, as so many others, are still suffering.
I never developed the problems my beloved spouse and so many others did. Even so, I remain unconvinced that I actually have “gout”… it doesn’t go away with the typical treatments… so… is it really “gout” or Cipro-Toe?
Keep fighting, people.
Deb
February 9, 2023
Fluoroquinolone Associated Disability (FQAD) and the FDA
It is disturbing to me that the FDA’s Antimicrobial Drug Advisory Commitee is focusing FQAD on people who were healthy prior to the exposure to FQs and and received it for a “minor” infection … They are basically saying that if you were “already sick” you don’t have FQAD. Their criteria:
- Patients who were previously healthy
- Patients who took a fluoroquinolone to treat a urinary tract infections, bronchitis, or sinusitis
- Patients who experiences adverse events in two or more body systems, including peripheral neuropathy, neuropsychiatric, musculoskeletal, senses, cardiovascular, and skin.
- Patients who had a substantial disruption of their normal life functions.
Unfortunately, the first two criteria don’t preclude having the last two criteria. In my spouse’s (Joe M Johnson) case, his diabetes was well controlled and he was not experiencing symptoms such as PN. The instant the massive dose of Cipro hit his system via IV he began to experience pain. He told his nurse, his doctor and the associated people floating in and out of his hospital room that he was in severe total body pain. They told him that “cellulitis hurts” even though the cellulitis was located in his lower left leg ONLY. Then they upped his morphine. Since that fateful day in 2009, he has had a cascade of symptoms including PN tendon tightening over his entire body, exacerbated cardiovascular problems, exacerbated diabetes problems, skin problems, and neuropsychiatric problems that essentially peaked within three months of his exposure and have not gone away. The pain syndrome he experiences daily has not abated in any way and most likely has not peaked. There has been, indeed a “substantial disruption” of his normal life… going from a man who in the course of his job walked 2-4 miles a day, operated heavy machinery, welded, cut metal with hand shears, to name but a few of the physically taxing activities of his daily work.
Today, he mostly sits with his legs raised, waiting for the next time he can medically take another pain pill. I’d say his normal life was substantially disrupted.
For the FDA to suggest that only people who were previously healthy prior to their exposure to this poison could possibly be affected by adverse events and thus have FQAD is outright mendacity.
His daughter, nephew and father also all had immediate reactions to these drugs, but because of Joe’s experience, they stopped taking them and got better. The fact that they all had a reaction to the drug seems to indicate a genetic component to the sensitivity and predisposition to damage.
These drugs need to be removed from the market immediately and new testing started with the REAL groups the drugs are used to treat… MOST people are not “completely healthy” and have some kind of underlying health issue that these drugs have an ability to “switch on” … their ability to work at the genetic level is a large part, I believe, of the damage potential. The manufacturers and the FDA have absolutely NO IDEA how a drug that operates on a genetic level works in someone with a genetic anomaly that might predispose the individual to the potential array of adverse reactions these drugs can cause.
References:
Federal Register Announcement of the Committee Meeting
November 2015
Lessons from Entrepreneurs
This is an important idea in the fight to raise fluoroquinolone awareness.
No News is No News
Hi everyone. It has been a long time since I’ve typed and anyone has read. And I have no real good news. As a friend of mine once said “No news is good news? Naaah. No news is just no news.”
Joe is still in pain. In my opinion it is worse than ever, but that is just a loving wife’s perspective. When he hurts I hurt. A couple of weeks ago he was completely out of pain medication because the doctor’s office miscalculated when his Rx was due. He went 5 days without his meds… with the doctor’s office telling him he’d taken too many. He had not. They thought they’d given him a 4 week Rx, when they’d really given him only 3… they told him he had to wait until Monday to get his drugs, even though the pharmacist had confirmed that he could get the Rx, they wouldn’t give it to him. On Friday, I found the prescription bottle. He called the doctor’s office and straightened them out. The nurse apologized. Yeah. Thanks. Five days of pain and she says “I’m sorry.”
In the last three years, we’ve met a lot of people who have been floxed. We’ve joined several Facebook groups and found lots of support there… I’ll post the links at the end of this post and in the links. We’ve met people in our own town harmed by the same doctor who harmed Joe. And yet, he is still out there slinging this poison.
The FDA declared Peripheral Neuropathy such an adverse reaction threat, that it placed it in a black box. We could have told them that long ago. In fact we did.
Joe’s never ending foot wound: have I mentioned that? I’m not even sure I’ve written about it. Three years ago, he developed a foot wound that would not heal. Typical problem of diabetics right? Sure it is. And it continues to be marked as a “diabetic foot wound” but had he never been floxed, he would have had better flexibility in his foot, better circulation and better healing ability. He had surgery to lengthen 5 tendons in his left foot. I am hopeful that he will heal soon. But then, I’ve been hopeful for three years.
On this 4/20/14, I want to sing the praises of Medical Marijuana. Without it, Joe would be in worse pain than ever. It has been a valuable tool in his pain management, and yet, it is still illegal in our state and that is just plain wrong. People with chronic pain do not get “high” from MM, or narcotics. They get relief. The time is now to legalize Medical Marijuana.
I vow to keep this blog a little more active. There is much more to say.
Debora
April 20, 2014
Facebook groups:
Some of these are closed groups because closed allows us to be more forthcoming about our issues. To join a group, just ask to join.
Fluroquinolone Toxicity Group
Fluroquinolone Twilight Zone
Flox Cannabis
FQ Awareness and Education
Fluroquinolone Antibiotic Poisoning
Fluroquinolone Toxicity 24/7 Live Chat Group
Long Time Floxed
Always ASK When Your Doctor Prescribes an Antibiotic!
Joe has recently been told he needs cataract surgery. No biggie right? We went in to the Doc’s office yesterday to see the ophthalmologist who will be performing the surgery on Joe’s eyes. Her assistant handed us an Rx for Vigamox.
Now, Joe’s chart quite clearly says that he is sensitive to Penicillin, Levaquin, Cipro, and cephalosporins. I had never heard of Vigamox. Later, when the Doctor came in to talk to us, I asked if it was a version of amoxicillin. No, she said, it wasn’t. Then she flipped over to the pages of Joe’s drug sensitivities. She said that it wasn’t related to penicillin but it was related to Levaquin and Cipro and asked what Joe’s reactions were to these drugs. Joe explained in as few words as possible what had happened and said he really didn’t want to run the risk of using an eye drop that might affect the nerves or tendons. She said she’d never heard of any adverse effects of this drug but she did switch the drug to a non-FQ.
So, I came home and checked… Vigamox is just another version of Avelox. The generic is moxifloxacin. Now, whether or not the drug might possibly have an adverse effect for an average patient is not applicable here, as far as I am concerned. What is applicable is that the patient, Joe in this case, had previously reacted to ANY fluoroquinolone.
So, EVEN if you have listed that you are sensitive to FQs, or that you refuse to take FQs… if someone gives you an Rx, ASK … it could be an old FQ with a new name.
© 2011
Two Years Since the Floxing and Still in Pain
Recently, we have been in touch with some local folk who have been floxed here in our town. These folk are from every walk of life. All are suffering from various forms of side effects … Peripheral Neuropathy, muscle weakness, brain zaps, tinnitus , and the list goes on. One of our friends let us know about the PBS News Hour piece on Fluroquinolone poisoning. We hadn’t seen it. Much to our surprise, at about 3:30 seconds into the piece there is a screen shot of the Facebook page Wall of Pain on which Joe’s picture (accompanied our dog Sophie) appears. Joe’s five minutes of fame — to go along with his lifetime of pain.
By way of explaining why there have been so few posts from me this year, Joe has been fighting a series of infections. Infections caused directly by the peripheral neuropathy that he did not have prior to his poisoning by Levaquin and Cipro. In the summer of 2009, Joe was on IV Cipro for 4 days, and either oral Levaquin or oral Cipro for a total of 7 weeks. We have had more than one doctor tell us “that is too long… but I won’t testify to that.” Of course they won’t. Never mind that one of their kind harmed an innocent person by overdosing them on a dangerous drug, they’ve got to stick together.
This year, in early February, Joe developed a sore on his foot — typical of diabetics with peripheral neuropathy — he began treating the sore with a podiatrist. By June the sore was in such bad condition that the podiatrist recommended we go to the Wound Healing Center here in town. They began much more aggressive treatment, did MRIs and discovered that there was bone involvement. Joe then went through 8 weeks of hyperbaric treatment along with intravenous infusions of our good friend Vancomycin… plus another hospital stay due to septicemia in the left arm PiCC line, removal of the infected line and insertion of a new PiCC line in his right arm.
The good news is next week he will have a skin graft on the wound because it is healing nicely and they are wanting it to close up faster.
The piss-me-off-I’m-so-angry-I-could-chew-nails-in-two news is that NONE of this would have been necessary if he had not been floxed in the first place because he would not have developed what could only be termed “rapid onset” of peripheral neuropathy. The doctors can try to make this all about his diabetes because it covers their asses… but the fact is that he did not have PN before the floxing, he devloped PN during the floxing and the drugs were not withdrawn , and his PN has continued to get worse and all while his diabetes was/is under control.
One of the many problems with these drugs is that they do not test it on people with underlying health conditions… say people with diabetes… who might develop side effects that they don’t want to see because they would make it more difficult, if not impossible, for them to get approval of the drug. A person with diabetes, or even a person prone to diabetes, simply should not take this drug.
As I mentioned a few months back, Joe’s daughter developed side effects after one dose, Joe’s dad had a similar reaction. A few weeks ago, Joe’s nephew was given Levaquin for a chronic wound and developed side effects almost immediately. Joe’s dad has a mild form of diabetes; his daughter and nephew do not. In my humble opinion, and with no medical training, just an ability to research and observe, I believe there to be a clear possibility of a genetic component to the reactions to these drugs. This is not to say that if no one else in your family has had a reaction to them you won’t, but it is clear to me, anyway, that the possibility exists that if one member of a family has had a reaction, other members are more likely to react as well.
For myself, I believe that the numerous dosings of Avelox, Cipro and Levaquin (as recently as March of 2009) have caused me to develop fibromyalgia-like symptoms… in fact, I believe that this is where fibromyalgia came from. Can’t prove it, just a wild-assed guess… nonetheless… I believe the connection is there.
So that is the End-of-Summer update from here in the Wilds of NE Kansas…
© 2011
New Post from Dr. Jay Cohen
Greetings all! Sorry for the delay in getting more stuff out on this blog, but life intervenes whether you want it to or not. Two weeks ago our daughter called to say she had strep throat and they’d given her an antibiotic. Her Dad, Joe, asked her what it was and she replied Levaquin and she didn’t feel so good. He told her to immediately stop taking it, because that was one of the drugs that hurt him. She had remembered “no Cipro” but didn’t realize that it was the entire class of drugs she needed to be wary of.
I think it is really interesting that Dr. Jay Cohen’s newest post starts out with a very similar story. Why is it when you tell a doctor “no Cipro” that he/she thinks that Levaquin or any of the other FQs are OK?
Dr. Cohen has long been on “our side”, writing articles, books and medical journal articles about the dire effects of fluoroquinolones. He has a new article out in his Medication Sense newsletter.
Thanks to Dr. Cohen for his continued vigilance.
© 2011
Coming Out…
I decided today was the day to “come out”. Today I am putting my real name on the blog. I have been semi-anonymous — if anyone really wanted to know who I was they could find out — but today that seems, what? Disingenuous, perhaps. I am asking you, my reader to share your experiences of floxing while hiding … ok … behind my middle name … but still … I need to own this experience fully in order to continue to move through it.
I write about what I know and what I have an opinion on. I know what has happened to Joe and what I have experienced. If you’ve read any of this blog you know that I haven’t candy coated. If you’ve had the experience of being floxed, you know I haven’t exaggerated.
Sorry for making this about me today – but this blog is as much about me as it is about Joe. It is, as I said in an earlier post, about how this thing, the floxing, changes the space around you — alters your universe for ever. So one more little alteration won’t really harm things now will it? One more little tweak.
© 2011
Yesterday, Today, and Tomorrow
Yesterday
Well, I promised an update on Joe’s birthday and suffice to say, it was wonderful and he had a good day. He was able to cook dinner and celebrate his day with family and friends. This, as you may well understand, was an unexpected treasure.
The following days, however, brought more pains and ever increasing and even new side effects.
Curling Toes:
Joe has noticed that his toes are curling more now than ever before. No one will acknowledge that the curling toes have anything to do with tendon damage, but my question is: “How could it not?” Tendons connect the toes to the feet and his toes NEVER curled before. But over the past year his toes have become more and more bent to the point that they rub inside his shoes. He always had very narrow feet for such a tall (6’3″) man wearing narrow width New Balance shoes for work and play. Then he had to start wearing the average width and now, the last pair of shoes he bought in December, wide width — just to feel comfortable in his shoes.
Memory issues
We were married a seven years ago in a civil service, but had never had our marriage blessed by the church. Joe’s mom really wanted that to happen and last December, I was able to clear some obstacles and we were able to have our marriage blessed in a nice little ceremony with some of Joe’s family present. A couple of weeks ago, we were at church and the priest was talking about the sacrament of marriage. Joe looked at me and said “We really need to schedule the marriage blessing with him.” Frankly this little “memory blip” terrified me.
Joe has had memory blips before — sometimes he forgets where he put the keys or his cell phone or wallet – or he forgets that he has already been to the grocery store – these aren’t so frightening – but a big event – we had a ceremony, dinner and the event lasted pretty much all afternoon – just seemed like WTF?
I reminded him of the day and then he remembered – the event safely stored in his cells, but the fact that for probably two – three minutes, he didn’t remember having done something that had been such a big issue was frightening.
The Latest: Nosebleed
Last night, quite suddenly, Joe developed a nosebleed. I am particularly affected by nosebleeds because my Mom used to get them due to her chronic suffering from Hepatitis C. As her liver degenerated due to the disease, she began to develop more and more nosebleeds. I have, for some time now, been concerned over the amount of acetaminophen that Joe is prescribed in conjunction with his Lortabs… the doctor has refused to take him off the combined hydrocodone/acetaminophen drug and just give him the hydrocodone for pain relief, saying that the acetaminophen “controls” the amount of hydrocodone Joe takes. For what it is worth, that is true, because Joe doesn’t want any further damage to his already-ravaged body so he watches closely to make sure he doesn’t overdose on acetaminophen. I belive that it is just laziness on the part of the physician that he “controls” the hydro by running the risk of liver damage. This new development makes me all the more concerned that liver damage is in our future.
Emotional Stress
Over the past month, Joe has lost several people who were close to him… first, my uncle Herb passed away at the end of December at the age of 93 of complications from prostate cancer. We had not been able to travel to see him for several years and this first death hit Joe pretty hard. It made him start thinking about his own mortality and the quality of his life between now and the end of life. This set the stage for his 56th birthday on January 16. He, like so many people do when they pass the mid-point of the fifties “did the math” and realized that he had far fewer days in front of him than he had behind. This sent him into an emotional tailspin that lasted until the second death in our family… Joe’s uncle Ron. Uncle Ron died last week (at 83) after having shoveled his snow-covered drive and sidewalks and suffering a heart attack. Although Joe had talked to his uncle many times, we hadn’t seen him in several years, despite the fact that he only lives 40 or so miles away. The second tailspin began – the primary reason, over the past couple of years, we haven’t seen either of these now-passed uncles was because we really couldn’t because of Joe’s health issues.
Within a day of Uncle Ron’s passing, another extended family member – a brother-in-law of one of Joe’s brothers – died of ALS – he was 63. This only continues the tailspin – someone so close in age passing away of such a terrible disease. Today is Don’s wake and Joe doesn’t feel he can attend because he is in such pain.
This is the kind of thing that has been happening for the past two years – some family event – good or bad – wedding or funeral – picnic or wake – happens and Joe is having a bad day and can’t attend, despite all his good intentions and desires. This not only add stress to his life, but it tears away slowly but surely at the quality of his life.
Tomorrow
We have a number of things planned over the next few months. We want to make a trip to see my aunt and my brother, a dear friend has a milestone birthday in June, we want to visit our daughter, we want to go to the family reunions planned for the summer… The saddest part is that we aren’t even sure if we can go to the funeral tomorrow. Not only will it depend on Joe’s overall condition, but it will depend on weather conditions as well – we’re slated for another snow/ice storm to come in tonight.
The only real relief we have is of our own making – hope. Hope that it will be a good day tomorrow and not a bad one.
All Our Tomorrows
The terrible truth of these horrible drugs – ciprofloxacin and levofloxacin and all the other “floxins” – is that they affect the quality of one’s life. A drug that is supposed to “cure” you of an infection isn’t supposed to take your living life away from you. I understand that many drugs have side effects that are unpredictable. I have read the flames coming from people who are too cowardly to put their names on their flames. These flamers would have you believe that if we don’t want to be “cured” we can just not take the medicine and “just die”. They would blame the victim as so many other victims of other crimes have been blamed. The thing is, my husband didn’t have a choice. No one, not the doctors, the nurses, the hospital pharmacist, or the retail pharmacist warned him about the possible side effects. The first time he received these drugs was in the hospital thus there was no package insert to read and contemplate and agree or object to… just a bag of poison appearing on the IV rack. No one listened when he told them he hurt. And no one listens even today as he tries to get his doctors to understand that he was not an unhealthy, pain riddled, toe curled man when this started in spite of his diabetes! They all want to make this about the diabetes ONLY.
Well… I believe it is about the diabetes. It is about how fluoroquinolones react with the underlying health conditions of a patient. It is about how Big Pharma didn’t do their homework to understand how this class of drugs could damage an individual with the underlying health condition of diabetes.
Please understand that I am not saying that these drugs will only damage people with underlying health conditions – I am not! These drugs are dangerous and should only be used as the last line of defense against an infection. Too many have been harmed by just a pill or two to deny that they are harmless. Too many more have been harmed by the direct infusion of these poisons into their blood stream. (I have only recently discovered another person’s blog about this type of damage.)
Please if you are reading this or anyone else’s blog, if you or someone you know has been poisoned by this drug, do something! Start your own blog. Join the Facebook pages. Most importantly, post your experience with Med-Watch. (see links below) We must raise the consciousness of the public about this horrible toxin that is being handed out like mints in our doctor’s offices and pharmacies. We must raise the consciousness of the public that you can be given this drug without your knowledge of its side effects. You may, like so many of us, feel like we are waving our lanterns in the darkest night – but someone else will see it – and then someone else – and then someone else…
© 2011
Today is Joe’s Birthday
Well, Happy Birthday Joe. Today he awoke with pain only on his left side — go figure. But he’s awake and moving around so this is good. The sad thing is that in just under two years he’s gone from a robust and active 54 year old man to the 56 year old pain filled man I’ve introduced to you on these pages. I’ll post more about the birthday later, but for now, I’ve gotta go — We have a birthday party to attend!
© 2011
No Cipro Please 