February 2014 - Page 2

Fluoroquinolone Neuropathy Feels Like Acid Burning and Electrocution

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My name is Janet Murray, I am 57 years old. I do not even know how to put my health story into words so that the human mind can understand the pain I have lived with. I lived in Canada and had been given many courses of Cipro for various illnesses over the last 30 years. Sometime ago, I began developing a lot of strange problems that no one could diagnose. I had GI difficulties, body pain, migraines every week, severe interstitial cystitis – so severe they wanted to remove my bladder. Thankfully, they did not. I was given many diagnoses too, including Chronic Fatigue Syndrome (CFS) and fibromyalgia. My cognitive abilities became so impaired. I loose words and my memory is shot.  I had to leave my job with the Federal Government and work at home, at my own hours. I have been extremely fatigued for the last 25 years, but I never connected the dots between my health issues and the fluoroquinolone antibiotics like Cipro, Levaquin, Avelox and others until I blew out my forearm tendon, a classic post fluoroquinolone adverse reaction. It was only then that I began to learn more about the chronic symptoms that fluoroquinolone antibiotics evoke. I had them all and more.  These symptoms didn’t appear all at once, and so it was difficult to identify at first, but over time, my illnesses became readily apparent and progressive to the point that it was no longer a question of if I was poisoned by a fluoroquinolone, but how badly.

Let me back up a little though and give you some more details. For years, I was fatigued and suffering from post fluoroquinolone reactions, but I didn’t know it. During that time, I had a long distance relationship with the love of my life in NJ.  He waited and visited me back and forth for 10 years and I visited when I was well enough. When I was finally was well enough to immigrate to the US, I he asked me to marry him and so I stayed and had two wonderful years. We are jewelry designers and did the large shows. I functioned, at very low level and had to rest always, but I was living my dream. Even functioning at such a low level, I was happy after many years of hell.

One year, I kept getting bronchial issues and went to a walk in clinic. I was given Levaquin with Prednisone with NSAIDS and was on small dose of a benzodiazepine. Fluoroquinolones should never be used with steroids and NSAIDS, something I did not know at the time and apparently neither did the doctors.  I took this combination again and again and again across that year.

Janet Murray - Before and After FQ
This is me before and after fluoroquinolone toxicity.

My reaction to these drugs was delayed and so it did not occur to me to link the Levaquin or my past Cipro use to my strange symptoms. I have since learned that delayed adverse reactions are common post fluoroquinolones. After my first script that year I was more tired, could not walk far and something was not right. I didn’t know what though. During the second year I woke up with acid pain in the shoulder and could not lift it. I was told I had frozen shoulder. It was really a tendon rupture, common post fluoroquinolone.

The pain in my forearm and shoulder was horrific. It took 8 months before I could move my arm again. Then I woke up one morning and the same thing was happening on my buttock tendons. I had the same horrific, acid-like pain. Those tendons ruptured. I crawled for 4 months and tried to stand when I could. I could no longer walk, the pain was unbearable.

One morning I woke up and my entire body felt like it was beaten with a baseball bat. I had a shot-like feeling in the base of my neck. I sat up, vomited and shook. The next day my entire body started to shake. I felt like I had been electrocuted. I had sharp pains of electricity though my entire body. My skin felt ripped off of the bones with electric jabs and jolts. I had large jolts of electricity cursing through my body. I sat for 5 months frozen, feeling like I was living in a body of large, angry hornets, stinging me all over 24 hours a day, 7 days a week. The electrocutions were never ending.

My stomach almost shut down almost. Every joint in my body popped and cracked when I moved.  My legs would not hold me. I lost the vision in my right eye due to a macular tear. I lost four teeth due severe periodontal damage. Other symptoms include:

  • Up to 40 mouth sores at a time. The doctors say they look like burns or lesions. I wonder if it’s not a form of Steven-Johnson Syndrome.
  • Swaying, if walking, dizzy, feeling of being “stoned” in the head.
  • Sensory chills so severe with stinging that it takes 4 hot water bottles and wearing then down top as well.
  • Arms and hands go dead and numb
  • Constant feelings of being electrocuted
  • Severe bowel constipation
  • Intolerance  to most foods
  • Body hair stopped growing
  • My skin has become very thin and transparent with enlarged veins.
  • Pin prick sores on my legs and what looks like burns all over my body.
    Post fluoroquinolone skin reactions
    On the right, the burn-like lesions all over my body. On the left, the pin-prick sores on my legs.
  • I experience severe changes in body temperature.
  • Feelings of terror and anxiety, not related to any surrounding, that come out of the blue
  • Severe depression
  • Hyperthyroid

And the strange symptoms go on and on. No one seemed to understand. I was almost dead. I dropped 40 pounds in three months. My heart pounds non-stop. Terrors and jolts surge through me. I was hysterical and crying.

The doctors keep saying I have fibromyalgia. FIBRO, I am being electrocuted..!! It couldn’t have fibro. I sat and thought this is NO normal illness but nothing showed up much on my tests. I have seen 50 doctors and no one can find anything.  I feel like I have been poisoned.  I soon learned, I was not alone.  It was the Levaquin, a fluoroquinolone antibiotic that I have since learned, causes severe peripheral neurophathies, mitochondrial damage, and all of the seemingly unrelated symptoms that I have experienced over the last couple of years.

Right now, I am in so much pain, I cry daily. I wake up with night terrors, heart pounding. My feet feel frozen, as if they are dying due to extreme hypothermia – the kind mountain climbers face when their fingers and toes turn black. That’s what my feet feel like. My tongue burns like a hornet’s nest, day in, day out.  It has been a year now, living with all over the body hornet stings and large tree like branch zapping about 40 at a time. I had the EMG and nerve biopsy that shows axonal swelling.  I had an MRI showing two white matter lesions in the frontal lobe, the doctors say are consistent with MS or Lyme disease.

I should mention, I also tested positive for the MTHFR mutation that makes methylating vitamin B’s difficult.  Even with the axonal damage, no one knows what to do. They tried to give me painkillers but I cannot tolerate them and vomit them back up. I have been on Paxil for years, more because I cannot seem to withdraw from it than anything else. Gabapentin, even at a high dose, does nothing and so I suffer.  I cannot take this much longer. I cannot live with the nerve pain. Please help.

A few other clues that might be helpful for understanding this mess.  When I tried acupuncture to relieve the nerve pain, it made it worse. The hornet’s nest sting lit up. Ditto for niacin. When I was given niacin, my body reacted very strongly.  If there are doctors, researchers, patients, or anyone out there that can help reduce the pain I experience, who can help heal, reverse, or even just slow what seems to be a progression of increasing pain, please leave your comments here. Thank you.

Participate in Research

Hormones MatterTM is conducting research on the side effects and adverse events associated with the fluoroquinolone antibiotics, Cipro, Levaquin, Avelox and others: The Fluoroquinolone Antibiotics Side Effects Study. The study is anonymous, takes 20-30 minutes to complete and is open to anyone who has used a fluoroquinolone antibiotic. Please complete the study and help us understand the scope of fluoroquinolone reactions.

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Is it Time to Include Inactive Ingredients in Chemical Safety Testing?

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The answer to that question is an unequivocal and very loud YES. For generations, the industrial chemical companies, whether they be pharmaceutical, agricultural, energy or from other sectors, have maintained that only certain ingredients in their products must be measured and accounted for – the so-called ‘active ingredients’. The adjuvants, those chemical compounds that dilute, preserve or in some way maximize the delivery of the primary chemical, are considered inert or inactive by regulatory agencies. As a result, and much to the benefit of the chemical manufacturers, those adjuvants fall outside the purview of testing and regulation. That is, not only are most of these chemicals not identified in the primary product, but they are not tested for safety – ever.  Only the active ingredients are tested, singly, and never with the entire chemical cocktail that is the product itself.

As one might suspect, the inactive ingredients are far from inactive, either when tested alone or when combined with the active ingredients. In chemistry when compounds interact, it is not always a simple, linear, one to one relationship; sometimes 1+1 = 10 or more. That is the case with adjuvants. Indeed, that is their function – to maximize the strength of the active ingredients, and so, by definition and by design, failing to test adjuvant safety represents the height of scientific dishonesty.

Slowly and despite the chemical industry’s promulgations to the contrary, independent scientists are demonstrating just how active, inactive ingredients really are. In the field of agricultural chemical safety testing, one lab stands out – the Seralini Lab in France. Over the last several years, researchers from the Seralini Lab have conducted and released a series of controversial studies on agricultural chemical safety. Here are just a few that we have covered on Hormones Matter: Controversy, GMO Research and Women’s Health and Inert Ingredients in Glyphosate Herbicides are Toxic Too.

Adjuvants Matter

Just recently, the Seralini Lab published another damning set of experiments showing just how toxic the cocktail of chemicals found in common, presumed safe, pesticides, herbicides and fungicides really are. The study: Major Pesticides are More Toxic to Human Cells than their Declared Active Principles, demonstrates clearly the egregious inanity of testing only manufacturer declared active chemicals.

In the present study, researchers measured the toxicity of nine common, commercially and consumer available formulations, three from each category, pesticides, herbicides and fungicides, against three types of human cells, embryonic-kidney (HEK293), placental (JEG3), and young adult liver (HEPG2).  What they found was striking. Eight of the 9 formulations tested were several hundred to several thousand times more toxic than the active chemical alone and at levels significantly less than currently allowed by regulatory standards and used commercially. The single formulation that was not more toxic than declared, contained no adjuvants.

Fungicides were found to be the most toxic chemical formulations at levels 300-600 times lower than currently accepted agricultural dilutions. Next in line was Roundup, one of the most heavily marketed and used herbicides, worldwide. Roundup toxicity ranged from twice to 10 times that of the other herbicide and pesticides and its total formulation was 125X more toxic than its declared active chemical, glyphosate.The placental cells were most sensitive to the toxins, followed by embryonic and liver cells, respectively.

Mechanisms of Toxicity

The most common mechanisms of toxicity were cell membrane disruption and the interruption of mitochondrial respiration rather than an immediate initiation of cell death or apoptosis. The authors note that apoptosis was difficult to measure because cell-death occurred via a necrotic progression rather than an immediate apoptosis reaction. This is important for a number of reasons.

The job the adjuvant is to maximize the insect, fungal or weed killing properties of the active ingredient. Seralini’s work shows us that these adjuvants work as designed, even in human cells. They maximize the killing properties of the active ingredients by weakening cell membranes (all the better to absorb the poison intracellularly and leak cell contents out into the extracellular space) and disrupting mitochondrial respiration (impaired energy and nutrient processing, make surviving the toxin that much more difficult).

Adjuvants increase toxicity by specific mechanisms that call into question, not only, their absence in testing, but the nature of toxicology testing in general. Specifically, these adjuvants evoke cell injury versus cell death. They increase the permeability of the cell wall and decrease mitochondrial respiration. These mechanisms evoke complex and chronic health conditions that are difficult quantify in standard dose-response toxicology curves with humans. Here is it is not the dose per se that increases death rate, even though higher doses would expedite the process, but the time lapse required between the exposure and the necrotic reactions in cells to reach critical mass to be clinically relevant. Imagine a slow and painful death versus the immediate and easily recognizable death.

In lower organisms like bugs, weeds and fungi, where mass is smaller, life cycles are shorter and chemistry simpler, the time frame is quicker, the injuries are more obvious and death more expedited. A standard dose response curve may appear appropriate because with the expedited time frame of the organisms life cycle e.g. the critical mass of necrotic cells can be reached more quickly to initiate death.

In contrast, however, those same deleterious mechanisms activated in higher animals and humans, would not be so easily detected, within the short time frame generally allocated for these types of studies. Initiating mitochondrial dysfunction in humans and large animals would be unrecognizable at first, and perhaps chronically, making connecting the dots between exposure to these toxic chemicals and ill health particularly difficult. When the mechanisms action of the poison evokes a process that is time dependent, larger doses appear safe, at least in the short term and with lower organisms.

In humans, the effects of the formulation would also be dispersed across multiple tissues and organs systems but how and where the toxins wreak the most havoc would be inconsistent and dependent on other factors such as previous exposures, genetic predispositions, other illnesses, medications or stressors that would modulate the current exposure. All factors that are not accounted for in toxicology in general, but especially in toxicology studies that ignore all but the manufacturer’s declared active principle – the active ingredients.

Final Thoughts

Any toxicology study that purports product safety but does not test the entire chemical formulation, adjuvants and other presumed inactive ingredients included, should be thrown out. Simple, dose-response curves are inadequate for all but most preliminary investigations. Long term studies must be conducted to evaluate the onset of disease and cumulative exposure effects, including endocrine disruption. Finally, Seralini points out, that his research is among the first to test the safety of these chemicals in human cells. This is beyond unconscionable, particularly considering these products have been on the market for decades. Regulatory agencies must test product safety against human cells. Otherwise, why even bother.

A Buffer Zone for Abortion Patients or Free Speech?

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Recently, the Supreme Court heard McCullen v. Coakley, or the Massachusetts Buffer Zone case, in which pro-life activists claim that their right to free speech is violated by the standard buffer zone (35 feet) around Massachusetts abortion clinics. The buffer zone allows anti-abortion protesters to picket behind the line while ensuring the safety of patients and staff. Now, anti-abortion activists are seeking to remove this buffer zone.

Staff and pro-abortion activists are concerned that the removal of the buffer zone will endanger the physical safety of patients and staff at clinics, not to mention the emotional toll that abortion seekers will face entering a clinic. Currently, women seeking a termination to their pregnancy still have to pass the buffer zone, where protesters may verbally interact with them or use graphic signs to intimidate them. With the buffer removed, patients will have to interact directly with people whose goal is to prevent their entrance. Whether that is achieved through verbal intimidation, spitting, preventing the patient from exiting their car, or starting a fight, seems not to matter to some fanatical protesters.

There have been many instances in which patients and staff, especially staff who escort patients to their cars, have been verbally or physically assaulted by anti-abortion protesters. This piece in Mother Jones features several interviews with family planning staffers who have witnessed instances of intimidation and the physical prevention of women entering the clinic by protesters looking to start a fight. In very rare instances, clinic workers and volunteers have been shot and killed by anti-abortion activists, and some people fear that the elimination of the buffer zone may lead to more intense violence and loss of life.

To see what entering and exiting a clinic without a buffer zone would be like, read the second half of this piece in Think Progress. Protesters can trail patients to and from their cars and pass them flyers and videotapes. That in itself doesn’t seem terrifying, but the breach of personal privacy causes patients to turn back simply from the intimidation. Clinic staff can call the police if protesters break any physical boundaries, such as physically touching a patient, but some protesters feel they have nothing to lose.

If the Supreme Court rules in favor of these activists, the consequences would reach further than family planning clinics, it seems. Other politically motivated activist groups would be free to confront their targets with impunity, as long as outright violence does not take place. Take, for instance, these gun rights activists carrying assault weapons who waited in a Texas parking lot to confront a small group of gun control activists. That kind of behavior is not only menacing, but downright threatening. The line between free speech and aggressive scare tactics could become very thin if it’s federally protected.

Free speech is one of the cornerstones of citizenship in the United States, and it’s vital to the existence of good journalism, political debate, and political protest. However, when the protection of free speech trumps the physical safety of other citizens, there is cause for concern.