Sunday, June 3, 2018

It is an absolutely beautiful day, today! The sun is shining and it is not too hot; the birds are singing; and all of the plant life has burst into bloom! While I already shared my beautiful iris plant, that is double blooming like crazy, I cannot help to think that it is not the only gift that keeps on giving.

It has been many years since I my body was permanently damaged by the antibiotic Cipro. (a commonly prescribed antibiotic for bladder,  sinus infections, and UTI's) I am grateful that the reoccurring pain, due to the damage caused by Cipro, is no longer constant, and that I have periods of time, that I actually forget that it even happened, but boy, oh boy, let me tell you, when it flares back up, I am reminded just how life altering a "simple round" of the antibiotic Cipro, can be.

I believe that this latest flare is directly linked to the night of dancing, a week ago. It was the third time that I had been dancing since my shoulder surgery, and since my pleural effusion has improved, due to a change in leukemia medications, and I am sure that I just over did it. My heart and soul,  just do not know when to say, when! lol

The nerve pain in the bottom of my feet began as soon as I stepped out of the car; after arriving home. I was a bit annoyed, yet hopeful that it would be gone by morning; of course, as my luck would have it,  that did not happen. The nerve pain has just continually gotten worse, and I am hobbling, with every step.

Two days ago, the nerve pain started traveling up the back of my left leg; It is so severe that it makes, sitting, standing or lying down miserable. Ibuprofen seems to bring some relief and today I am trying heat. UGH!

My reason for sharing this information is purely,  to warn you; warn you against taking the risk of ending up with side effects from an antibiotic (Cipro or Levaquin or any florquinolone)that may be permanent. I swear I would not wish this pain on anyone; it SUCKS!

I know that it is very hard to believe that an "antibiotic" can cause permanent nerve, tendon and muscle damage, to name a few,  and I know that most medical professionals just do not believe the severity of the side effects, or the number of people damaged by them, but what I can tell you, from my personal experience, and from speaking to others who actually realize where their unexplained pain has come from, is that it just is NOT worth the risk.

For those of us that have been damaged by this class of antibiotics, we know how life altering, that decision has been, and I know we all wish we had been "warned", or at least counseled, like the Black Box Warning states. (this rarely happens)

I know that people probably think I am a bit obsessive about this subject, but every single time I am physically reminded how my body has been destroyed, I want to save others from the same fate.

I believe in my heart of hearts, that a large number of people that have tendon tears and ruptures, and others that are diagnosed with Fibromyalgia, are actually suffering from Cipro or Levaquin side effects; sad, but true. I believe that the FDA recorded number of cases, is grossly under reported, as I believe that few actually correlate their pain, and/or tendon ruptures to an antibiotic that they are currently taking, or have taken in the past.

If you suffer from unexplained pain, or tendon ruptures, or any of the side effects listed below, delve into your medical history and see if you have taken Cipro or Levaquin. Best case scenario, is to avoid it, unless it is your LAST drug of choice!

Side effects include, and are not limited to: (remember, some of these may be permanent)

Swelling or inflammation of the tendons
Tendon rupture
Tingling or pricking sensation (“pins and needles”)
Numbness in arms or legs
Muscle pain
Peripheral neuropathy (nerve damage)
Depression
Hallucinations
Suicidal thoughts
Confusion
Anxiety
Abnormally rapid or irregular heartbeat
Ringing or buzzing in the ears
Vision problems
Skin rash
Sensitivity of skin to sunlight
Fatigue
Worsening of myasthenia gravis
Aortic aneurysm
Aortic dissection

On a side note; as I was looking for the side effects of these antibiotics, I was FLOORED to see  how  "hidden" the possible permanent damage is, on the internet. You really have to dig, or search; Black Box Warning. Truly unbelievable, and absolutely infuriating.

At this point, who is responsible? The pharmaceutical company? The prescribing physician? The pharmacist? Or the person who trusts, all of these people?

Related Links: https://www.cbsnews.com/news/class-of-antibiotics-gets-stronger-warning-due-to-dangerous-side-effects-says-fda/

https://www.fiercepharma.com/pharma/fda-amps-up-black-box-warnings-antibiotic-class-includes-j-j-s-levaquin-bayer-s-cipro

https://www.drugwatch.com/news/2016/05/16/fda-black-box-warning-for-levaquin-cipro-antibiotic-risk/

https://floxiehope.com/2016/08/19/updated-black-box-warnings-for-fluoroquinolones/

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Friday, November 8, 2013

Was Sprycel Keeping My Peripheral Neuropathy at Bay?

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In April of 2010, a little more than three and a half years ago, I suffered extreme side effects from an antibiotic called Cipro, also known as Ciproflaxin. This antibiotic is in a class of antibiotics called floroquinolones; Levaquinn and Avelox are also in this class of antibiotic. Apparently in 2010 there were over 20 million prescriptions written for Cipro, and its’ popularity has increased.

Cipro was designed as a powerful, last drug of choice, antibiotic to be used in extreme bacterial infections that did not respond to prior treatment; it has become a first choice antibiotic for many, many physicians and dentists, despite its’ Black Box Warning status.

So, what’s the big deal? It’s an antibiotic, right? All antibiotics come with some risk and side effects, right? If you’re sick, you need an antibiotic, right? While all of these answers may be “yes” I will tell you what three doses of this antibiotic have done to me; they have apparently caused a permanent, peripheral neuropathy; with my feet being the hardest hit.

I suppose that I probably take in excess of 10,000 steps each and every day; imagine excruciating pain every time that you put weight on your foot; that is 10,000 jolts a day. And imagine that after you experience the jolt, your feet just throb in between each jolt. That is what Cipro did to my feet. I had/have many other issues as well, but my feet are my greatest challenge.

Fast forward eleven months from my second floxing; I was diagnosed with chronic myelogenous leukemia. During my initial treatment I received a chemotherapy drug called Cytarabine. Within days of receiving these chemo treatments, my foot pain began to subside; eventually it became almost non-existent. I began to be able to walk normally and I began to be able to use and bend my toes, my knees and my hips without pain. I was ecstatic! I had found a golden lining to having leukemia; my daily pain was much improved; I began to move, and dance like my old self. To me it was miraculous; to the doctors, they simply shrugged and said that they often heard that people’s RA and other peripheral neuropathy improved after chemotherapy.

I cannot tell you how happy and excited I have been without this daily pain. I was released from the hospital and began a daily medication called Sprycel. Sprycel is a drug used to treat CML. Apparently it also has kept my peripheral neuropathy at bay, because for two and a half years, my pain level has remained stable.


That is until I developed pleural effusion, a side effect of Sprycel, and had to stop my treatment for three weeks until the PE resolved. During this time, the pain in my feet has returned. It began slowly but has continued to progress; it is depressing and I swear I would go in and have a round of chemo if I knew that it would help. I am hoping and praying that by resuming my Sprycel treatment the pain will begin to subside once more, but I also wonder if the Sprycel was strong enough to hold the peripheral neuropathy at bay, but not strong enough to stop it. 

Something to ask at my next doctor's appointment....

Monday, September 30, 2013

Sprycel Vacation: The Good, the Bad and the Ugly!!

Interestingly enough, I have noticed many different things that Sprycel does, and doesn’t do, to my body. After a nearly three week vacation, it has been difficult in some ways to return to my CML treatment, but comforting and even helpful, in others.

The major disappointment in returning to treatment is my missing “spark”; Sprycel seems to have a way of diminishing my inner “happy” glow! I know that sounds silly, and I am still an extreme optimist, but the bursting-over joy, that I have when I am not on Sprycel, just is not the same. This coupled with the fact that when I am not on Sprycel, the leukemia has an opportunity to kick start its engine.

That being said, there is a comfort to returning to the battlefield. The most difficult part being the return of the side effects; I have suffered greatly from muscle spasms in my back, am extremely tired, and once again, my hair is starting to fall out! Ugh, it was finally beginning to grow again. The afternoon, flu-ish, fever-y feeling has returned, along with the headaches.

The Good news is that the peripheral neuropathy, from the Cipro damage, is beginning to subside again. I still cannot believe how taking Sprycel keeps the pain in my feet, and joints in my legs, at bay. I suppose this really is the golden lining to living with a chronic cancer; totally strange!

My belief and hope is that it will not take as much time, as it did when I first began taking Sprycel to adapt to the medication and for the side effects to seem less severe. I often wonder whether the side effects actually lessen, or if we just learn to better adapt to them.


What do you think?

Wednesday, September 18, 2013

Peripheral Neuropathy, from Cipro, Returned; Not Good!

As many of you may already know, four and a half years ago, I suffered severe side effects from an antibiotic, in the floroquinolone family, called Cipro. The first time it happened, I suffered a ruptured tendon. I did not correlate the ruptured tendon to the antibiotic, Cipro.

Eleven months later, I was nearly crippled by the drug. I was given it a second time for a urinary tract infection; I took five pills and my body was destroyed. I mean literally destroyed; I suffered from the worst pain I have ever felt, in my entire life. It was mostly located in my hips, legs and feet. The pain was constant, excruciating, and never subsided. This time I DID realized that it was caused by Cipro.

I also suffered from light sensitivity and total brain fog. This is not something that you would wish upon any one, not even your worst enemy. There is no way to reverse these side effects and doctors simply shrug their shoulders when presented with a floxed patient.

Oddly enough, I suffered with this destruction and peripheral neuropathy, right up until I received chemotherapy treatments, after being diagnosed with CML. Oddly enough, there is something in the chemotherapy that can reduce symptoms in RA patients, and now I have experienced the same thing; pain relief. I was ecstatic and figured that this pain relief was the golden lining, in having leukemia.

Fast forward two and a half years; the peripheral neuropathy and the light sensitivity have improved drastically, although I cannot say the same thing about the brain fog. All was well until I developed pleural effusion and bronchitis last month; I had to go off of my Sprycel treatment, until my lungs were functioning properly, again.

 Within ten days of ceasing the Sprycel, the peripheral neuropathy began to return. I started getting extreme pain in the balls of my feet and toes, (my hardest hit area), skin sensitivity and the feeling that my Achilles and other tendons could rupture if I was not careful. I was horrified and angry. It really makes me ponder the correlation between the peripheral neuropathy and the TKI’s, as well as the chemotherapy; AND just how damaging this class of antibiotics, really are.

Moral to the story; I am actually blessed to have CML because living with that sort of pain is truly unbearable. It literally made me wish I would die; I would rather have cancer than the pain associated with the damage from those drugs. How sad it that?


In my opinion, unless it is an absolute, last resort, life or death situation, the floroquiolone, antibiotics Cipro, Levaquinn and Avelox, should be avoided like the plague!

Tuesday, September 10, 2013

Living in Chronic Pain? Create Your Own Brief History

Recently I was talking to another CML buddy about my pleural effusion. He has also suffered from pleural effusion as well as many other side effects, which many of us deal with, too. I thought that I was pretty darn good at keeping tabs of my medical issues and records, but when I saw his “Brief History” I was very impressed.
He actually encouraged me to start my own brief history quite some time ago, and I am not really sure why I never got around to it. Now, I have to go back through my “thick” medical records that I DO have, and create a wonderful “Brief History”, like his!
I would encourage each and every one of you to do the same; even if you don’t go back to your diagnosis, you can begin documenting your important data now, as we all will be managing and living with CML, for the rest of our lives.
My friend has kindly allowed me to share his Brief History, with you, as an example.

DX CML 12-23-2008
MDA Protocol: Tasigna-400mg; 2xday-1/09
On Flecainide for AF...still had frequent episodes
Q PCR bone@ MDA…0.17 on 7/09
Acute Pancreatitis-7/5/09
Stopped Tasigna-7/13/09
Q PCRU blood @ Baptist…undetected-7-29-09 !
Started Gleevec-400mg/day-7/31/09
Developed rash ~ 8/19/09
Rash treated with Steroids..improvement
Rash worsens~9/22/09
Stopped Gleevec-9/28/09
Restarted Gleevec @300mg/day-10/8/09
Stopped Gleevec-10/13/09-toxic rash\
AF returned infrequently
Q PCR bone-0.05
Started Sprycel @ 100mg/day-10/20/09
Some AF...increased FLecainde..1, 2x/day
Q PCR bone @ MDA..0.07
Stopped Alcohol…no AF, ½ Flecainide 2x/day
Q PCR Blood @ Baptist…Non Detectible-12-13-10
Q PCR Bone @ MDA..0.01--2-25-11
Q PCR Blood @ Baptist…Undetectible-5-19-11
Reduced Flecainide to 1/2 per day
Pleural and pericardial Effusion: stopped Sprycel-12-6-'11
Prednisone 50mg /day to combat PE; 12/14/'11 gradual reduction
Pleural Effusion clear 12-21-11
Started Sprycel 70mg/day..12-23-11
QPR bone @ MDA.. <0 .01...2-16-12="" span="">
Started Sprycel 50mg/day..3-10-12
Chest pains...slightly more PL Eff 4-19-12
Steroid Dose pack to alleviate:.still on 50mgs
Change to 20 mgs/day Sprycel..4-26-12
Chest clear, effusion gone-5-14-12
Q-PCR Blood @ Baptist-Undetectible-6-13-12
Neuropathy moving up legs, some weakness noted--12
Q-PCR Blood @ MDA..<0 .01="" span="">
Q-PCR Bone @ MDA…<0 .01="" span="">
Q-PCR Blood @ Baptist….Undetectible..6-19-13

Wednesday, September 4, 2013

FDA Announces New Black Box Warning!

Apparently there has been a change to the Black Box Warning for Floroquinolones. The FDA announced on August 15, 2013, that fluoroquinolone drugs such as Levaquin, Cipro and Avelox will be required to change packaging inserts to contain a warning for severe, permanent and disabling peripheral neuropathy. The FDA states that the damage may occur very soon into the administration of the drugs and the damage may be permanent.

If you are wondering what peripheral neuropathy is, this is the description from the FDA: Peripheral neuropathy is a nerve disorder occurring in the arms or legs. Symptoms include pain, burning, tingling, numbness, weakness, or a change in sensation to light touch, pain or temperature, or the sense of body position. It can occur at any time during treatment with fluoroquinolones and can last for months to years after the drug is stopped, or even be permanent.

Permanent: I cannot even imagine the pain that I suffered during the first two years, after being floxed, lasting forever. I swear that I would have jumped in front of the bus, if I had not begun to see a slight decrease in pain, during the first six months. This pain relief was minuscule, yet gave me hope.


I am telling you that the pain was the absolute worst pain, I have ever experienced. It is not like a cut or a bruise, it is not like a broken bone or a migraine; it is like you are walking on burning glass. It is constant and never subsides; even the air hurts the affected parts of your body.



I was unable to touch my feet or toes; I could not wear socks or shoes and could bear absolutely no weight, on the front part of my feet: for years. My hips, knees and Achilles felt as though they would burst at any moment. This pain is indescribable. Not only did I have pain in my legs and feet, I was unable to open my eyes in the morning, because of the light, for hours, and even then I had to keep the house dim. I couldn't remember things, I was easily confused and literally just wanted to sit in a dark corner and cry. The skin on my body hurt to the touch and wearing anything other than really, really soft material, was excruciating. This is not something I would wish on anyone!

There was not a doctor, or pharmacist that had any advice on how to control the pain, or if it would ever go away. The only person that gave me any sort of advice on how to try and detoxify my body, and rebuild the damage was Dr. Leland Carroll; a chiropractor. I believe that it is with his help, my persistence and a round of chemotherapy, (due to my leukemia diagnosis) that I am much improved. It absolutely floors me, that once you have suffered the toxicity of these drugs, that there is absolutely no protocol on how to stop, or reverse the damage. No one can tell you that someday, you MAY get better.


I will bet you that the orthopedic surgeons that are repairing torn tendons and the Fibromyalgia doctors that are treating tons of patients with chronic, unexplained pain, are thanking these drugs; all the way to the bank. You can bet that they never even ask their patients if they have taken a floroquinolone. This is disturbing and unconscionable.




I am certain that many physicians are completely unaware of the Black Box warning placed on fluoroquinolones in 2008; and I am certain that most have never seen the outcome of those of us that have suffered these side effects. Probably the biggest reason for this, is simply the lack of correlation, to the pain and the antibiotic; not many figure out what has caused their pain, therefore, it goes unreported. 

Fortunately, the internet is bringing these issues to light, and hopefully our voices are being heard. We need to report these side effects to the FDA and the drug companies, and once made aware of the risks, we must refuse this class of antibiotics, unless there is no other choice. Trust me, you do not what to take the chance, that you will become the next victim.

I do not believe that any doctor or dentist would knowingly prescribe an antibiotic that is so dangerous; unless they were completely unaware of the consequences, or there was no other option. I also understand that all drugs come with their own list of precautions and warnings, risks and side effects. These must be carefully weighed; and you must decide if the result, outweighs the risk. Believe you, me; if I had had a choice of diarrhea or a rash, over being crippled and in chronic, extreme pain, I would chosen the diarrhea or rash; every time. Usually, there are alternative antibiotics, but you must ask.

I believe that it is the pharmacist's responsibility to inform a patient of the Black Box Warning, prior to filling the prescription; I know that this was not the case on the two prescriptions that I filled. What good is a Black Box Warning if no one knows about it? Education is key here, for physicians and pharmacists, not to mention the patient, We, as patients need to take these warnings seriously.

Thanks to the internet, the dangers of Cipro, Levaquinn and Avelox are finally getting the wide spread attention they deserve.There are petitions and lawsuits, and there was even a march on the capital lawn, in Washington, bringing awareness and looking for retribution for victims. Victims are tired of being victims and they are realizing that they really are not just one in a million, but one of many. 

Do not fall prey to the antibiotics Cipro, Levaquinn or Avelox; it is not worth the risk. If you have suffered peripheral neuropathy you may wish to contact the Floroquinolone Victims Advocacy Network. 
New class action suits are being prepared.



Monday, September 2, 2013

Black Box Warning: May Cause Permanent Nerve Damage

I have been harping on this for years! So glad that it is finally getting the attention it deserves! I truly believe that thanks to the internet, people are not only becoming more informed, they are also sharing their experiences, finding similarities and putting two and two together.

The over "abuse" and "over-use” of this class of antibiotics puts me into a rage; I cannot believe that they are so freely prescribed when in truth, Cipro was originally "designed" to combat Anthrax. It is a powerful antibiotic, that when used as prescribed; as a "Last Drug of Choice", can be lifesaving.

When over used and abused to treat UTI's, kidney and sinus infections, the medical field is inadvertently creating an entire population that will learn what it is like to live in severe, chronic pain; some of these people will be crippled for life, others will just require surgery to repair torn tendons and ligaments.

I certainly wonder how many people have been diagnosed with Rheumatoid Arthritis or Fibrolmyalgia or had an unwarranted Achilles tear that are actually suffering from the side effects of these antibiotics; without ever realizing it, I mean who in their right mind would ever think that an antibiotic could cripple you? When you think of a reaction to a drug, you think, stomach ache, diarrhea, rash, can't breathe, not: "I cannot walk."

People are often given these drugs prior to dental work, or after developing a fever, following surgery. 
Many of these people begin to experience extreme pain and have no idea why. Typically they go to a doctor who typically prescribes a cortisteriod, or cortisone, which inadvertently exasperates the damage done by the antibiotics. Of course, the doctor does not ask if the patient has possibly taken a floroquinolone; which would explain the extreme pain; and hopefully change his plan of attack.

Even orthopedic surgeons that repair all of these tears rarely ask whether or not a patient has taken this class of drug; they do not care about the "why" an injury happened. I often wonder how many top athletes injuries are caused by these drugs. Kidna' like Kobe Bryants; “I didn't do anything I haven't done thousands of times before" maybe he had recently taken a floroquinolone.

Of course, then these same people have more dental work and the cycle continues. These drugs have DESTROYED my mother's life and body. It wasn't until a few years ago that I actually put two and two together, and yes, she had seven, almost empty bottles of Levaquinn in her medicine cabinet. I was infuriated and stunned!

Anyway, it is with the birth of the internet and the grace of all who have shared, as well as have searched for "cures" that the damage that these drugs can cause, is now becoming more recognized. I implore each and every one of you to read the following information and to store it in your memory bank. The pain that these drugs can cause is excruciating, and may be permanent.


Posted Wednesday, August 28, 2013 at 11:03am EDT
Certain antibiotic drugs cause permanent nerve damage. Here is what you need to know about the risks and what you can due to help your body heal naturally.

Black Box Warning: May Cause Permanent Nerve Damage


A certain class of antibiotics have been issued a new black box warning because they cause serious nerve damage. Black box warnings are the most serious and often deadly side effects of drugs that are literally outlined in a black box on the package insert. Fluoroquinolones, such as Cipro, Levaquin, and Floxin were prescribed to over 23 million people in 2011 alone. They are commonly prescribed for respiratory and urinary tract infection. These are relatively simple conditions that have many natural and safe treatment alternatives. However, antibiotics are one of the most commonly prescribed drugs in America. Those hoping to find health from a pill are in for a very serious and very dangerous surprise.  These drugs cause peripheral neuropathy within a few days of starting the medication. The nerve damage may last for months or it may be permanent even when the drug is stopped. They do not cause this nerve damage in every person who takes them; however, you are playing Russian Roulette every time you take most prescription drugs. You may be the one who is permanently affected. Is it worth the risk simply for a possibly quicker recovery from an infection?
Peripheral Neuropathy Explained
Peripheral nerves are nerves that run from your spinal cord to every muscle and organ in your body. They are the lines of communication between your brain and the rest of your body. Neuropathy is a general term referring to nerve damage; nerves that no longer work properly.
While peripheral neuropathy is commonly diagnosed in the arms and legs because those areas are easier visualized, it also occurs in the nerves that control your organs. Pain and numbness are common early signs of peripheral neuropathy in the arms or legs. It then progresses as muscle problems such as weakness and loss of muscle control.
Ever wonder how something as simple as an antibiotic can cause death? One of the many ways is their effect on the autonomic nervous system – nerves controlling the organs that keep you alive. Peripheral neuropathy nerve damage affects these nerves as well. This causes problems with digestion, heart problems, breathing problems, and kidney and liver dysfunction. Ultimately, this can lead to death due to organ failure.
Other Side Effects of These Antibiotics
This particular class of antibiotics also carries another black box warning issued by the FDA in 2008. That warning was for sudden rupture of tendons, the tissue that connects your muscles to your bones. As if this two side effects are not enough, antibiotic drugs, like Cipro, have pages and pages of additional side effects from allergic skin reactions to deadly anaphylactic shock. Antibiotics also cause deafness in infants, children, and adults alike. Cipro causes sensitivity to sunlight that makes it difficult to be in direct sunlight. Of course, this reduces your body’s production of Vitamin D, further weakening your immune system, which allowed the infection to develop in the first place!  We could go on and on about the various, dangerous effects of antibiotic drugs. However, I think that we have already covered enough ways that they can kill you. See Drugs.com for more.
Healthy Alternatives to Antibiotics
If you have a bacterial infection, what can you do to heal without the potentially deadly side effects of antibiotic drug treatment?
1. Wait it out.
While most infections are not pleasant, they usually pass with few problems and no permanent damage.
·         Side note: Your child’s pediatrician may have told you that certain infections may cause deafness in your infant child if not aggressively treated with antibiotics. The truth is that there is no research comparing the risks. There is, however, ample research documenting that aggressive antibiotic treatment does cause deafness in infants. The vast majority of cases of deafness associated with childhood illnesses are in those who were treated with high doses of antibiotics.
2. Get some sunshine.
Vitamin D is a strong immune system supporter. Adequate vitamin D levels are essential for a healthy immune system. Your body’s only natural source of vitamin D is sunshine. If you are in an environment where this is not possible, it is easy and inexpensive to supplement your diet with vitamin D3.
3. Eat more Antimicrobial foods.
Many foods are designed with the natural ability to kill off dangerous bacteria. These include Coconut products like coconut oil, coconut milk, and coconut butter; raw, unpasteurized honey; and vegetables such as garlic, onions, and cabbage.
4. Eat fermented foods.
Raw, fermented foods, such as raw sauerkraut, raw pickles, and cultured vegetables contain probiotics that strengthen your body’s normal immune response.
5. Consume antimicrobial herbs and spices.
Many herbs and spices have antibacterial properties. A few antibacterial heroes in this category are turmeric, ginger, and chili peppers.
6. Exercise in short, quick bursts.
While an infection may cause you to feel tired and rundown, exercise – especially in short bursts – actually increases your energy levels and stimulates your immune system to speed natural healing.
7. See your chiropractor.
Stress on your nerves weakens your immune response drastically and increases your risk of most infections from UTIs to the flu. Receiving chiropractic adjustments regularly – especially when you are sick – removes this nerve stress and dramatically increases your rate of healing.
The best thing about these natural alternatives to antibiotics is that none of them will kill you and they will actually make you healthier!  Including all of these as part of a wellness lifestyle creates a strong, disease-proof body that has no need for antibiotic drugs.
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Thursday, December 13, 2012

Yet Another Cipro Side Effect



Thanks to a reader for sharing this information: This is yet another reason to avoid taking the antibiotics Cipro, Avelox and Levaquinn. These are very powerful antibiotics that are listed as a "not first drug or choice" yet are prescribed like candy for urinary tract infections, bladder infections, prostatitis and respiratory infections. They are very powerful and have extremely severe side effects associated with them. Often these side effects linger on for many years after ceasing to take the drugs. PLEASE be careful and request an alternative antibiotic if you are prescribed a floroquinolone.

A common class of antibiotics was linked to a higher risk of so-called retinal detachment -- when the light-sensitive tissue in the eye separates from gel that fills the eyeball, in a new Canadian study.

People treated by ophthalmologists for the emergency condition were five times more likely to be taking drugs known as fluoroquinolones, which include ciprofloxacin (marketed under names including Zoxan, Proquin and Cipro) and levofloxacin (Levaquin, Cravit), than those who didn't have retinal detachment.

"We know that these drugs are toxic to connective tissue and cartilage," said Mahyar Etminan, the study's lead author, noting past studies linking fluoroquinolones with damage to Achilles and shoulder tendons.

"We wanted to see whether this damage also may translate in the eye, because there's lots of connective tissue in the eye," Etminan, from the Child and Family Research Institute of British Columbia in Vancouver, told Reuters Health.
Retinal detachment, which starts as the appearance of lines, dots or "floaters" across the eye, can cause permanent blindness in some cases if it's not surgically treated within a few days.

Etminan and his colleagues used data from doctors' treatment records for everyone in British Columbia who saw an ophthalmologist between 2000 and 2007 -- almost one million patients. That included about 4,400 people diagnosed with retinal detachment when they were an average of 61 years old.

Prescription records showed that one out of every 30 patients with retinal detachment was taking a fluoroquinolone at the time, most commonly ciprofloxacin. Most antibiotic users were taking the drugs for respiratory or urinary tract infections.

Among a similar group of patients who visited an ophthalmologist but didn't have retinal detachment, just one in 167 had been recently prescribed the antibiotics.

The researchers couldn't be sure why the drugs were tied to an increased risk of retina problems, but said the most likely explanation is that they damage fibers and connective tissue attaching the retina to the eye's vitreous gel.
There have been "lingering concerns" about the possible effects of fluoroquinolones on the eye for a while, said Dr. Terrence O'Brien, from the Bascom Palmer Eye Institute at the University of Miami Miller School of Medicine.
He told Reuters Health the new study suggests an association between fluoroquinolones and retinal detachment, but doesn't prove that everyone on the drugs will be at extra risk.

For example, it may be that people who are already prone to tendon problems -- such as older patients -- will be the ones who could be affected by certain drugs, said O'Brien, who wasn't involved in the new study.

The extra risk due to the antibiotics was small. Etminan and his colleagues calculated that 2,500 people would need to be taking fluoroquinolones for any reason for one to have retinal detachment.

Another class of antibiotics that includes penicillin wasn't tied to more retina problems, the researchers reported Tuesday in the Journal of the American Medical Association.

Non-drug risks for retinal detachment include a past cataract surgery, being nearsighted or having an eye infection.
Retinal detachment is rare, Etminan concluded, "but because the condition is quite serious, I don't think it would hurt to let someone know... if you notice these flashes of light or floaters, be sure you get it checked out."

O'Brien agreed. "This study should alert both patients and physicians to the possibility of retinal detachment, and any patient developing symptoms or signs of retinal detachment while taking a fluoroquinolone would be urged to seek immediate ophthalmic care," he said.

"It's not something where you'd want to wait or defer seeking attention."


Read more: http://www.foxnews.com/health/2012/04/04/common-antibiotics-tied-to-eye-emergencies-study-says/#ixzz1rIVALndr

Tuesday, December 11, 2012

My Mother's Life Destroyed by Floroquinolones


My Beautiful Mother!

While recently reviewing my mother’s medical history, due to the ulcers on her leg, I am 100% convinced that floroquinlones have destroyed the past eighteen years of her life. Eighteen years ago my mother suffered from a torn rotator cuff. I thought that it was odd that she had a torn rotator cuff since she did not ever “overuse” her shoulders. She did not golf; play tennis or regularly life heavy objects. She was fit and in great shape. I chalked it up to a fluke. Shortly after she had surgery on her right shoulder, her left rotator cuff tore requiring a second surgery.

No one found this odd except for me. When she returned twice more for additional tears in each of her rotator cuffs, I was appalled at the lack of interest as to “why” my mother suffered from four torn rotator cuffs, which required surgery. I had no idea “why” it happened; I just knew that it was not “normal” and that there must be a “reason.”

As my mother’s shoulders continued to heal, she began to suffer from an all over the body pain and achiness that would not subside and could not be controlled with medication. She saw doctor after doctor and they treated her with many drugs including mass doses of cortisone. She was monitored closely while on the cortisone (prednisone) and was eventually weaned from mass doses, to a therapeutic dose after suffering from the side effects from the mass amounts of cortisone that she had been given.

Since she was in such chronic and excruciating pain, the doctors continued to try medications and remedies, including intravenous Remicade (Humira). She was “loosely diagnosed with first, Fibromyalgia and them poly-myalgia-rheumatic. Yes, they were convinced that she had an auto-immune disease and Rheumatic Arthritis. She was often in so much pain that I would hear here crying and chanting, in private, praying for relief from the pain.

I remember her trying to describe the pain, in her feet, to me. She said that they felt as though they were on fire; like she was walking on broken glass; that even the air hurt her feet so badly that she could hardly breathe. It wasn’t until I suffered the same pain in my feet ,that I realized that what she was describing was floroquinolone poisoning.

I immediately asked her if she had taken Cipro; of course she had, many, many times; and Levaquinn and Avelox, for years and years. I expressed my theory and of course was met with doubt. She cannot even fathom that it is possible that her entire condition was not only caused by floroquinolones, but exasperated by the continual usage of them, combined with her cortisone treatment.

It was the ulcers on leg that led me to her medical records and the confirmation that she has been prescribed all of these antibiotics throughout this slow and painful destruction of her life. I am 100% convinced that this has been the cause of all of her pain and suffering. I literally took 6 bottles of Levaquinn out of her medicine cabinet the last time that I was there. I have called her doctor and told him of my suspicions. After almost causing her death, from a near heart attack while on Avelox, they have finally listed floroquinolones as an “allergy” on her chart.

I do not know how I will ever “prove” all of this, but what I do know, is that it is a crime that not once, has a medical professional ever even considered that her rapid and painful deterioration might have been caused by one of their “cures.” The over use of these drugs, is criminal.

I was very lucky that it only took me one ruptured tendon in my foot and 15 months of rehabilitation from crippling pain to realize that my conditions were due to Cipro, so fortunately I will not suffer her fate. I am so infuriated that it has stolen my mother's life and I shall continue with my crusade to warn others. 

Monday, December 10, 2012

Cipro; I Want to Ring the Prescriber's Necks!

Once again, I am appalled. My father, who is 78 years old, and a diabetic recently had a bout with diverticulitis. His doctor prescribed Cipro. Now, considering my father falls into the "high risk" category, of the Black Box Waring on Cipro, why in the world would any physician prescribe Cipro.

When I found out what the doctor had prescribed, I immediately called the doctor and the pharmacist, and of course my father, who believes that doctors' are Gods. The doctor's office "took a message" and told me that the doctor would return my call; yeah, right! The pharmacist, who has known my father for many, many years, totally agreed with me and said that she would prefer my father ingest a "different" antibiotic.

My father filled the prescription, stubborn man that he is, and immediately started having pain in both of his feet. My mother, finally took charge and forced him to call his doctor and insist on a different prescription. I think that we managed to dodge a silver bullet, but what will happen next time?

What is wrong with these freaking stubborn, or ignorant medical professionals? I want to ring their necks!

Sunday, December 9, 2012

Four Months After Being Floxed


It is now 4 1/2 months since I was floxed by Cipro for the second time. I am happy to report that after hitting a 2 month plateau on improvement, I have reached a new plateau. I was almost afraid to admit to myself or anyone else, that I felt as though I am experiencing a slight improvement in my feet. A VERY important improvement for me, as my passion is dancing. I passed my true test after a week of dancing every night. 3 nights of classes and 4 days at Palm Springs Summer Dance Camp. Yes, my feet were swollen, but I could still walk and they have since returned to their original shape and size!

My actual daily improvement is: A bit less pain in the balls of my feet and A bit more flexibility in my toes. Two mornings in a row now, I have been able to bend my toes, just a bit, but a great feat considering that they have been locked up for 4 1/2 months. My knees have improved more than my feet, but my pots and pans, and tupperware cabinets are still a disaster as I still cannot bear any weight on them in a squatting position....yet! I can now almost bend them to within 6 inches of my buttocks while lying down, which is miraculous, as when I was first floxed I could not bend them at all. I am also now able to maneuver stairs, both up and down, like a normal person. Slower than most, but still able to go up and down. In the beginning I could barely get up and down the 2 stairs into our living room. I had to use the railing and take them one step at a time, pulling myself up the stairs and holding my weight in my arms while going down them. I remember my chiropractor telling me that I would know when I was getting better when I could go up and down those stairs without having to think about it. Right now I think about it every time, in awe that I can now actually go up and down without the railing! Wow, the simple things in life!

I find that the more I move the better off I am, even if it is painful. The more I sit or lie down, the stiffer I am. I have continued to take the supplements and vitamins listed in another post, but have also increased my vitamin C to 2500 mg per day to increase my collagen. I actually began to notice the improvement 2 weeks after the increase in Vitamin C. I also am continuing to see a chiropractor every 3-4 weeks for therapy. It seems that this whole floxing episode has caused both of my arches to fall, which has led to increased pain. Custom Orthotics have helped tremendously. I am not a medical doctor and am only wishing to share what is working for me.

My best wishes to you all,
Michele

Thursday, December 6, 2012

Another Sufferer...

In 2007 Cahan bought one share of Johnson & Johnson's (J&J) stock so that he could attend the shareholder meeting and ask shareholders to:

1. Have J&J sales representatives discontinue the incentive program for selling Levaquin and Floxin so they can tell the truth about its toxicity to doctors.
2. Add to the Levaquin label that permanent delayed reactions can lead to chronic pain and the medication must be stopped at the slightest sign of reaction.

At the end of his speech, Cahan (who was in a wheelchair) asked William Weldon, J&J CEO, to "stick with your company credo—to help people," and he was given a standing ovation. "At the reception, the chairman of their pharmaceutical group came up to me and said she wanted to help me," says Cahan. "She asked me to sign up as a research candidate and said, 'My people will get back to you; these drugs should never be used for common infections.' I wrote to the board of directors and phoned several times, but I heard nothing back from her or anyone else at J&J."

A few years ago Cahan bought more J&J shares so that he could file a Shareholder Proxy for Johnson & Johnson's next Annual Meeting for shareholders—in April 2011. "I want them to vote on forcing the company to put a warning on the Levaquin label, stating it can cause permanent tendon and nerve damage, with permanent pain, differentiating it from the type of tendon injury that can heal when brought about externally by way of a sports-type injury. Internal damage that causes this much cellular destruction is permanent, and shareholders will hopefully have a chance to force the company to be honest and upfront about this information…"

Since 1998, Cahan has suffered permanent damage from taking Floxin, Levaquin's predecessor, which he took for just 10 days. "My calves and ankles became increasingly swollen to the point where every step hurt," Cahan says. "I saw a number of doctors but no one was aware of these drug reactions, although one doctor admitted that the swelling was from Floxin and he prescribed anti-inflammatory meds. He also told me to avoid stairs.

"About a month later, both Achilles tendons ruptured—a complete fraying of the small tendons. I was on disability for about four months, at home in a cast. I returned to work on crutches but was still in so much pain that one day I broke down and cried. I didn’t want to lose my job; I didn't know what was going on with my body. I was given prednisone; I was going to physical therapy and taking lots of sick days. This went on for years. Instead of using stairs on the subway I had to take a taxi; I had to prop up my legs at meetings and during the day I had to elevate them. It was a desperate time of my life.

"The problem was that doctors didn't know how to stop the inflammatory process and pain. (Science doesn't know how this happened so there isn't a cure—so far.) Quite honestly, I became suicidal. I couldn't sleep from the pain. I got help online and found through discussion groups that many other Floxin and Levaquin users had the same problems. I met John Fratti online and then in person; like me, John also bought J&J shares and went to a shareholder meeting."

Levaquin sufferers are counting on people like Paul Cahan and John Fratti to help them take this dangerous drug off the market. And they may help others, including prescribing doctors, to only take quinolone antibiotics as a last resort.

Here is the Floroquinolone FDA Black Box Warning!


FDA BLACK BOX

The Food and Drug Administration imposed the government's most urgent safety warning on Cipro, Levaquin, Avelox and many other flouroquinolone antibiotics. The FDA orders a prominent "black box" warning and the development of new literature for patients emphasizing the risks. The most prominent risk is tendon rupture causing long term disability, possibly permanent.

This is an important first step to ensuring these antibiotics are only used when the patient faces a potential fatal outcome, and only after the use of all other antibiotics have been ruled out. This is not due to the probability of risk, but rather severity.

To those who have been affected, prognosis is normally not good. There is no cure. Often repeat exposure through food and water cause a continual never ending cycle of symptoms. Many victims face the fact that their lives have been completely destroyed. Many face loss of job and income, some face breakup of the family. Some have even committed suicide because of the pain inflicted by these drugs.

Unfortunately, physicians currently give these prescriptions out like candy. To emphasize the ignorance of physicians, Cipro is often prescribed post-op for tendon repair surgery. The physician will often prescribe a drug known to cause tendon rupture as a preventive to infection after tendon repair surgery. There is an obvious neglect on the part of the physicians who simply do not known the potential dangers of the drugs they prescribe. So where is the breakdown of information? Unfortunately many physicians mistakenly rely on pharmaceutical drug reps to point out any potential side effects rather than investigating it themselves. Further implicating the physicians, they accept gifts from drug companies and in return will prescribe unnecessary and dangerous substances. Drug Reps, paid on commission, find themselves making more sales by not disclosing the dangers, or make light of potential side effects. Making the problem worse, the drug manufactures trivialize and distort the potential risks.

A pending U.S. Senate bill would require drug companies to report gifts to doctors of more than $25. New York State's legislature plans to hold hearings this year on the relationship between doctors and drug companies. One congressional critic has even compared the drug industry with the tobacco industry, and Senator John McCain has called drug makers the "bad guys."

Antibiotics known as flouroquinolones have been associated with some or all of the following adverse drug reactions:

Tendonitis, Tendon Rupture, Tendon, Ligament, Joint and Muscle Damage
Vision Damage, Hearing Loss, Taste Perversion
Peripheral Neuropathy (Tingling, burning sensation)
Insomnia, Nightmares, Anxiety Attacks, Depersonalization, Cognitive Disorders
Brain, Heart, Liver, Kidney, Pancreas, Blood and Endocrine Disorders
Severe Psychotic Reactions, Suicidal Thoughts or Actions
Gastrointestinal Damage

Compounding the problem, there are numerous drugs which should not be taken in combination with this class of antibiotics. There are increased risks of injury when they are taken in combination with corticosteroids (e.g.: Prednisone, Flovent, Nasarel, Azmacort, Advair Disku, Methylprednisolone Dospak, Elocon Cream, Desoximetasone Cream, and Sterapred) and when taken in combinations with non-steroidal anti-inflammatory drugs (NSAIDs) (e.g.: Motrin, Pamprin, Aleve, Advil, and Ibuprofen, among others). Physicians are frequently not aware of these contraindications and prescribe dangerous combinations of drugs which cause severe injuries to their patients. Physicians may also not be able to identify that their patient is suffering an adverse reaction and instruct them to continue to take more of the antibiotic resulting in very serious and perhaps preventable injuries.

Wednesday, December 5, 2012

Cipro Poisoning is Worse Than Leukemia!

This has been a pretty good week; the bronchitis seems to have finally found its’ was out of my body. The coughing is minimal and the low grade temp is gone. I finally have enough energy to start dancing again. This is a good thing as we have three brand new routines to learn and five additional dances to work on for our next dance competition at the Portland Dance Festival, in July. God willing, I will be well enough to keep practicing and to compete.

As we were practicing the other day, I had a surprising realization; it is much easier to dance with leukemia than it was when I was poisoned with Cipro. Cipro is an antibiotic in the floroquinolone family. It is a very powerful drug that was originally used to treat anthrax. They currently prescribe Cipro, Avelox and Levaquin at an astonishing rate, despite black box warnings and severe side effects. At the very top of the black box warning it states that Cipro is “Not a first drug of choice.” With the rampant illnesses floating around out there, I thought that now would be a good time to throw this information out there. I am not a doctor; only a victim.

It seems as though doctors and pharmacists alike do not “believe” the damage that is actually occurring to patients. They can be life changing and permanent.  They often state that the side effects are very rare. Truth be told, “Reported” side effects are very rare. Few people taking the drugs correlate a ruptured tendon or extreme all over muscle pain to their antibiotic. Many people are diagnosed with Fibromyalgia when in fact there pain was caused by their antibiotic; they just don’t realize it.

For me, it was a yearlong battle that was nearly crippling for several months with continued excruciating pain throughout a years’ time. Oddly enough, after going through chemotherapy, the muscle pain in my feet improved drastically. That improvement is what makes dancing easier with leukemia than dancing after being severely debilitated by an antibiotic that I should not have been prescribed unless absolutely necessary. That is the crime in the floroquinoline prescriptions; they should only be prescribed as a last resort, not as an easy fix. The risks just are not worth it. I could not have prevented my leukemia, but the Cipro poisoning could have been prevented. I am still angry about the stolen year of my life caused by that drug. Read more about Cipro poisoning here: Beware of the Antibiotic Cipro

Tuesday, December 4, 2012

Chronic Pain is the Worst!


Living with chronic pain does not only affect your body where the pain is located, it affects you entire life and well-being. It causes you to be chronically fatigued and often short tempered. It affects your ability to think clearly and to stay on task. Chronic pain robs your quality of life and can make you wonder whether or not your life is worth living.

I often wonder if a Pain Care Center, such as Pain Management NJ, would be able to help those of us that have been poisoned by a floroquinolone. Cipro, Levaquinn and Avelox have left thousands of people in constant chronic pain. If Pain Management NJ were able to help those of us in pain through their therapeutic treatment options, they could educate others on their methods thus helping the thousands of us that suffer from the muscle, joint and tendon pain that we all live with on a daily basis.

Pain Management NJ has helped many patients with neck and back pain due to injuries resulting from injury, deformity or degenerative conditions. Do you suppose that our muscle, joint and tendon pain and ruptures would be classified under the “degenerative conditions” category? Or, do you suppose that our pain is simply categorized as “other” with no help at all? I would like to hope that someday, someone, somewhere will have an answer or regime that will help all of us to regain our previously healthy lives.

Saturday, December 1, 2012

Too Many Have Suffered from Floroquinolones

In 2007 Cahan bought one share of Johnson & Johnson's (J&J) stock so that he could attend the shareholder meeting and ask shareholders to:

1. Have J&J sales representatives discontinue the incentive program for selling Levaquin and Floxin so they can tell the truth about its toxicity to doctors.
2. Add to the Levaquin label that permanent delayed reactions can lead to chronic pain and the medication must be stopped at the slightest sign of reaction.

At the end of his speech, Cahan (who was in a wheelchair) asked William Weldon, J&J CEO, to "stick with your company credo—to help people," and he was given a standing ovation. "At the reception, the chairman of their pharmaceutical group came up to me and said she wanted to help me," says Cahan. "She asked me to sign up as a research candidate and said, 'My people will get back to you; these drugs should never be used for common infections.' I wrote to the board of directors and phoned several times, but I heard nothing back from her or anyone else at J&J."

A few years ago Cahan bought more J&J shares so that he could file a Shareholder Proxy for Johnson & Johnson's next Annual Meeting for shareholders—in April 2011. "I want them to vote on forcing the company to put a warning on the Levaquin label, stating it can cause permanent tendon and nerve damage, with permanent pain, differentiating it from the type of tendon injury that can heal when brought about externally by way of a sports-type injury. Internal damage that causes this much cellular destruction is permanent, and shareholders will hopefully have a chance to force the company to be honest and upfront about this information…"

Since 1998, Cahan has suffered permanent damage from taking Floxin, Levaquin's predecessor, which he took for just 10 days. "My calves and ankles became increasingly swollen to the point where every step hurt," Cahan says. "I saw a number of doctors but no one was aware of these drug reactions, although one doctor admitted that the swelling was from Floxin and he prescribed anti-inflammatory meds. He also told me to avoid stairs.

"About a month later, both Achilles tendons ruptured—a complete fraying of the small tendons. I was on disability for about four months, at home in a cast. I returned to work on crutches but was still in so much pain that one day I broke down and cried. I didn’t want to lose my job; I didn't know what was going on with my body. I was given prednisone; I was going to physical therapy and taking lots of sick days. This went on for years. Instead of using stairs on the subway I had to take a taxi; I had to prop up my legs at meetings and during the day I had to elevate them. It was a desperate time of my life.

"The problem was that doctors didn't know how to stop the inflammatory process and pain. (Science doesn't know how this happened so there isn't a cure—so far.) Quite honestly, I became suicidal. I couldn't sleep from the pain. I got help online and found through discussion groups that many other Floxin and Levaquin users had the same problems. I met John Fratti online and then in person; like me, John also bought J&J shares and went to a shareholder meeting."

Levaquin sufferers are counting on people like Paul Cahan and John Fratti to help them take this dangerous drug off the market. And they may help others, including prescribing doctors, to only take quinolone antibiotics as a last resort.