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
Good days and bad days…
So many of our friends and relatives call and ask “How’s Joe?” And the answer is always “Well, he has good days and bad days. Today is a …”
Well, today is a good day. He is actually feeling pretty good today and that always makes me feel better. Hah! Today is actually a “bad” day for me since I feel like a cold is about to catch up to me. Must eat more grapefruit.
The past several days have been the same pattern for Joe – good day/bad day. A lot has to do with the weather – we live in the Midwest and currently have about 8 inches of snow on the ground and have just today crept up to 32 degrees F. There’s nothing like a below-0 temperature outside to make your everything hurt.
So I asked him today what he’d done differently that made him have more energy and less pain. Aside from just consciously keeping himself calm – by that I mean cut the stress at the start and not let the stressful reaction take hold – he has been “working” his meds.
Joe is on 20 mg Oxycontin (twice daily as needed), 10/500 Hydrocodone (up to 2, 4 times daily as needed), and 1200 mg Gabapentin daily (400 mg 3 times daily). These are the drugs that are most effective for his pain. Lately he has been spacing them out over the morning: Oxy early – around 6:00 a.m., then the Gabapentin along with his other drugs around 8:00 or 9:00 a.m., and then an hour or so later a Hydro if he needs it. This has been working quite well. Previously he was just not really paying attention to what was working when. We knew they all made a difference – he simply cannot go without any of them. What is interesting though, is that the Gabapentin is probably as critical to his pain control as the Oxy. He found this out the hard way recently because he ran out and since they aren’t “known” as pain killers, he figured he could wait a day or so to get them – well the day ran into four days and finally when he got back on the Gabapentin, he realized how much help the drug really was.
Good to know that there are good drugs — ya know.
He is monitoring this all much more closely but he may well have found the right mix. This is not to say that he no longer has pain – he does – what it does mean is that he can control it and not be loopy because of the amount of hydrocodone in his system. Yay. Maybe the days of his sitting here and snoozing for 4-6 hours are past.
© 2011
Why Does it Hurt So Much Update
Just a quick post today and then I promise I will get back to more regular posts here…
In a comment on my Alone and Yet Not, post, Lori (her blog is Down the Rabbit Hole … and in to chronic illness) reminded me of the name I was looking for in my Why Does it Hurt So Much post. Bob Grozier (there’s lots of Google stuff on Bob – here’s a brief intro to him on John Fratti’s site Death By Levaquin.) She also gave me the link to the video I was talking about. A word of warning: It is very difficult to watch this video — Bob is in so much pain it is painful just to see it. Lori said in her comment that she’d been in that much pain and I am here to tell you I have seen my husband in that much pain as well – he is just much more — stoic — about it, no screaming but tears — it really doesn’t matter though because, when someone you love is in this much pain it just hurts you as well. FYI you may want to turn your speakers down a bit — Bob screams in pain a lot.
© 2011
Alone and Yet, Not
As I sit here, thinking up today’s blog entry, reading news articles, thinking about the state of the world in general, my husband, Joe, sleeps rather soundly in his chair next to me.
It is 3:00 in the afternoon on a Tuesday.
As I started to think about what to write for today, I came up with the idea of being alone. Because, I am … alone … mentally anyway. He is asleep, so are our dogs. And I am here, standing watch, if you will.
Why is he asleep? If I am “alone” or “lonely” why don’t I wake him up. I do – occasionally. He has to wake up and take medicine. I have to change the dressing on his leg from his knee surgery. I have to add ice to the Polar Care device that is wrapped around his knee – so there are times he’s awake. Some days, he’s awake all day. But on days like today, when he sleeps so soundly, I just let him do it.
See, when he’s asleep, he isn’t hurting.
It is as simple as that.
And as complex.
The sad complexity is that sleeping means you aren’t living your life in real time. You aren’t experiencing a higher quality of life that we all wish we could have back from these dreadful drugs that we willingly took so that we could be “better”.
Joe is not “better” and the thing that makes me so very angry is that the Cipro and Levaquin were not the drugs that made him “well” – those drugs were the older, conventional antibiotics that cured his cellulitis. NOT these terrible, life-altering, drops of poison that took away his living life.
I know many floxed persons have insomnia – so I guess we should be grateful that Joe doesn’t. But, sleeping too much is just as awful as sleeping too little. Both take away your living life.
Both make you just a little less alive.
Yesterday was an alive day for Joe. He cooked dinner for his parents. He hobbled around their kitchen and made his Mom’s favorite goulash. He was in pain yesterday. Lots of pain, the shooting neuropathic pain, the hot irons pain and “real” pain from recovering from his knee surgery. But he still did something that he loved to do – cooking.
Today he is paying for it by sleeping all day.
And today, I pay for it by my heart breaking just a tiny bit more.
© 2010
Why does it hurt so much?
Well, today is one and one half years since my husband’s floxing began and I have to tell you it has been hell.
I don’t know how he stands it because when I see him in pain, I don’t know how I stand it. The last couple of days, what with the real onset of the cold weather here in Kansas, his pain has been significantly worse. Some of you may have seen the video of one of the fathers of this cause — sorry — I’ll remember his name and include a link later — in this video, he and his mother are in the same room and he is absolutely beside himself in pain. You can see that his mother is beside herself too, but trying valiantly to hold it together while her beloved son loses it. The video is long and quite painful to watch. I have watched it once — way back in August or September of last year and thought at the time, “Please don’t let it get that bad.”
From time to time I think for Joe it gets almost that bad. He stoically holds on, but sometimes he does indeed cry. I am not as good at holding on to my emotions when he loses it and I have, unfortunately, at times lost it right along with him. Of course this doesn’t help.
Years ago, when I was still trying to nail down a subject for my dissertation, having just directed a production of Joined at the Head, a play about a woman dying of cancer, I considered a topic studying plays that address disease, both the chronic type and the terminal type. What I was interested in — having only then recently gone through my mother’s death from a chronic and terminal disease, Hepatitis C, which she had contracted from a blood transfusion in the mid 1960s — was how the ill person changes the space around them and the ways that all their family, friends and even strangers have to change their lives to accommodate the unwell person. Ultimately, I was talked out of writing that dissertation by my advisors — too depressing — not interesting — not life affirming — basically they didn’t want to read it.
Today, I am still interested in this subject — I have lived through those changes so many times – with my father, my mother, a grandparent and an aunt who lived with us for a time, and now my beloved.
This thing - this floxing - this torture – foisted upon us causes us to change our world – rearrange our world – not just the furniture so it is easier to walk through a room or the bedside table, now covered in medications to treat the symptoms and the pain – but everything about who we are, what we do, how we think, even where we live (we’ve even considered moving out of the cross roads of every front that moves through the USofA – but not for Joe’s family – well, who knows).
And all because – as my dear spouse pointed out in abject frustration – because someone paid too much attention to the pharmaceutical rep and not enough attention to him.
We did what we were supposed to do. We told the doctors, nurses, pharmacy techs, phlebotomists, everyone we came in contact with at the hospital, doctor’s office and the pharmacies “something is wrong” - and no one – no one paid attention.
I wish I could end this post on an up beat – but today – I’m having a hell of a time just staying level – up is a long way from here.
© 2010
