Tag Archives: guest post

Deciding Which Treatments to Try

The following is a guest post from Stephanie. If you are interested in writing a guest post for FloxieHope.com, please let me know

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I really get bombarded all the time with, “go get stem cells how could you not?” I get so anxiety ridden from it. I know people mean well but it’s so hard on me. It feels like harassment and not love at certain points–like they can’t handle me being sick so I have to heal for them to be okay.

I just want people to know that whatever they do to heal is their own decision.

I’m constantly deciding–how much do I want to be tested on, and what treatments do I want to try?

I’ve been floxed for almost five years and it’s a 5 steps forward and 4 steps backwards dance where I hold onto the one step forward as best I can–because it’s better than the times where it’s 6 steps backwards and I fight just to get back to where I was.

The crazy part is that it all becomes a matter of how much I want to be tested and treated, AND how much I want to pay for it.

There still isn’t enough data to answer one simple question: Will this procedure help me or hurt me?

Because these side effects feel like a bomb went off inside my body that made things crazy, it feels like it’s impossible for any doctor–western or natural–to give me a straight answer of, Will this treatment help or hurt?

People can list out what helps but no one can know for each person. How I look at it is we are all being tested on to get more data and to pay for it.

So, I constantly have to weigh out, do I want to risk what I have for an unknown promise of healing?

That carrot is so tempting and so hard to answer.

For me, I weigh everything on what happens if it goes wrong how much will it mess up my life. How much can I afford this to mess up things?

My husband has medical issues too and he needs to be made to take care of things too.

So, it’s a dance that is never ending.

When people ask me why don’t I try this or that it’s because I don’t like to be poked and prodded and tested like a guinea pig.

I have to feel like the odds are somehow going to be in my favor because I’ve seen various experimental treatments make people so much worse, and I often think that it’s not worth the risk.

It’s easy to talk when it’s not your life and you are not the test bunny.

Why we have to pay for everything is beyond me.

Why we have to constantly be told yes these are side effects and you get to pay to maybe get your health back is beyond me.

So, for anyone out there that is pressuring someone like me to try something, please understand it’s really easy when you are not the one being poked, prodded, and tested–when it’s not your body and your life that may come crashing down if the treatment doesn’t work as-anticipated.

It’s not easy to pick what to do and how much you are willing to spend to go through treatments that haven’t been proven to work for everyone, much less everyone.

*****

The A to Z of Fluoroquinolone Toxicity Syndrome

The following was written by Kim Jansen. You can read Kim’s story of fluoroquinolone toxicity HERE

If you are interested in writing a guest-post for floxiehope.com, please let me know. Here is a post with more information about writing for floxiehope.

Here is a version of this post that is easier to read and print. It’s a great overview of fluoroquinolone toxicity to give to your loved-ones. The A to Z of Fluoroquinolone Toxicity Syndrome

The A to Z of Fluoroquinolone Toxicity Syndrome

A. Antibiotic. Fluoroquinolones are a family of broad-spectrum antibiotics that are commonly used to treat a variety of illnesses such as respiratory and urinary tract infections. Types of fluoroquinolones (along with their brand-names in brackets), include: ciprofloxacin (Cipro); levofloxacin (Levaquin); moxifloxacin (Avelox); gatifloxacin (Tequin); ofloxacin (Ocuflox/Floxin/Floxacin); norfloxacin (Noroxin). These antibiotics have serious side effects, with the term ‘fluoroquinolone toxicity syndrome’ being used to refer to the condition experienced by those who suffer from these side effects.

B. Bayer. Bayer is a pharmaceutical company that manufactures Cipro and Avelox. Bayer is currently facing a new lawsuit from a complainant, who has been diagnosed with peripheral neuropathy (see ‘Nerve Damage’ entry below) since 2011. She alleges that Bayer knew that Cipro could cause chronic or permanent peripheral neuropathy soon after receiving FDA (U.S) approval in 1987. By 1988, the drug companies possessed at least one published case report that constituted a safety “signal” that fluoroquinolones were associated peripheral nerve damage and that further investigation and study were necessary to protect patients. Since then, numerous other studies have affirmed this connection. This complainant’s Cipro lawsuit joins hundreds of other fluoroquinolone toxicity claims pending against manufacturers of fluoroquinolone antibiotics.

C. Central Nervous System Damage. Fluoroquinolones are able to penetrate the blood brain barrier, thus also able to damage a person’s central nervous system . The FDA in America acknowledged this fact and placed a warning about potential CNS damage on fluoroquinolone medication (see ‘FDA Warnings’ entry below). Some of the side effects of CNS damage include insomnia, restlessness, seizures, convulsions, and psychosis. An extensive collaborative investigation by scientists and member of a social network in 2016 found that 93 of 94 respondents of a survey reported fluoroquinolone-associated events including anxiety, depression, insomnia, panic attacks, clouded thinking, depersonalization, suicidal thoughts, psychosis, nightmares, and impaired memory beginning within days of fluoroquinolone initiation or days to months of fluoroquinolone discontinuation. They also discovered that mice treated with ciprofloxacin had lower grip strengths, reduced balance, and depressive behaviour compared with the controls.

D. DNA Damage. Fluoroquinolones work by inhibiting the replication of bacterial DNA. Tests have shown that these antibiotics also damage healthy DNA, including mitochondrial DNA. This is one of the likely reasons why the damage caused by fluoroquinolone toxicity affects multiple body systems and is persistent.

E. EMA. Public Hearing. In June 2018, the EMA (European Medicines Agency) held a public hearing to discuss the serious health concerns surrounding side effects of quinolones and fluoroquinolones. On 15 November 2018, EMA finalised a review of serious, disabling and potentially permanent side effects with quinolone and fluoroquinolone antibiotics given by mouth, injection or inhalation. The review incorporated the views of patients, healthcare professionals and academics presented at EMA’s public hearing on fluoroquinolone and quinolone antibiotics in June 2018. Here is an excerpt from the press release of their findings:
EMA’s human medicines committee (CHMP) endorsed the recommendations of EMA’s safety committee (PRAC) and concluded that the marketing authorisation of medicines containing cinoxacin, flumequine, nalidixic acid, and pipemidic acid should be suspended. The CHMP confirmed that the use of the remaining fluoroquinolone antibiotics should be restricted. In addition, the prescribing information for healthcare professionals and information for patients will describe the disabling and potentially permanent side effects and advise patients to stop treatment with a fluoroquinolone antibiotic at the first sign of a side effect involving muscles, tendons or joints and the nervous system.

F. FDA Warnings. The U.S. Food and Drug Administration has issued a series of warnings over the last number of years regarding serious and potentially permanent adverse side effects of fluoroquinolones, including a ‘Black Box’ warning (its strongest warning possible) in 2008, which it has upgraded numerous times since. A summary of the warnings is below:
a. 2008 – increased risk of tendinitis and tendon rupture.
b. 2011 – fluoroquinolones may have neuromuscular blocking activity.
c. 2013 – the potential for irreversible peripheral neuropathy (serious nerve damage).
d. 2016 – disabling and potentially permanent serious side effects that can occur together which may involve the tendons, muscles, joints, nerves, and central nervous system.
e. 2018 (July) – may cause significant decreases in blood sugar, potentially resulting in coma, as well as certain mental health side effects, including disturbances in attention, disorientation, agitation, nervousness, memory impairment, and serious disturbances in mental abilities called delirium.
f. 2018 (December) – the risk of aortic aneurysm and dissection.
Fluoroquinolones are now deemed to be a ‘drug of last resort’ in the U.S for most infections. The clinical guidelines in Australia, whilst not quite as strong, clearly indicate that fluoroquinolones should be reserved for serious bacterial infections for which an alternative treatment is not available. The reality of over-prescription and lack of physician awareness of the side effects of fluoroquinolones indicate a significant disconnect between the official regulatory bodies and current medical practice.

G. Glutathione. Glutathione is an important antioxidant. It is comprised of three amino acids (cysteine, glutamic acid, and glycine) present in most mammalian tissue. Glutathione also acts as a free radical scavenger and a detoxifying agent. A 2011 study found that the fluoroquinolone antibiotic Ciprofloxacin causes a significant decrease in glutathione levels in the body (a 25.5% decrease in levels by the fifth day of treatment.) . The reduction of glutathione in the body caused by fluoroquinolones is likely to be a contributing factor to the oxidative stress (see ‘Oxidative Stress’ entry below) caused by fluoroquinolones. Tests conducted on rats also revealed administering Ciprofloxacin resulted in a significant decrease in glutathione content in the liver.

H. Heart Damage. Due to its collagen-depleting mechanism, fluoroquinolones can cause serious damage to the heart. The U.S FDA released a warning in December 2018, stating that patients should avoid fluoroquinolone antibiotics due to an increased risk of heart-vessel tears. ‘These tears,’ it stated, ‘called aortic dissections, or ruptures of an aortic aneurysm can lead to dangerous bleeding or even death’.

I. Income loss. One of the all-too frequent associated impacts of fluoroquinolone toxicity is the sufferer’s inability to continue in paid employment. There are many media and online stories where people share the devastating impact this drug has had, not just on their health, but on their family relationships, their livelihood and their ability to be financially independent. One such news story is footnoted here.

J. Johnson & Johnson. Johnson & Johnson’s Janssen Pharmaceuticals unit discontinued production of the fluoroquinolone antibiotic Levaquin in December 2017, amid growing concerns over the serious side effects and complications potentially associated with the use of fluoroquinolone antibiotics. Another likely reason for this discontinuation by Johnson & Johnson is due to its having lost millions of dollars in previous lawsuits over Levaquin, (including settling 845 lawsuits over Levaquin in 2012) . There are still hundreds of individuals waiting to have their cases heard over debilitating injuries caused by Levaquin and other fluoroquinolones, which is another likely reason for Johnson & Johnson’s decision. Johnson & Johnson’s decision to cease manufacturing this drug does not constitute a product recall, with the drug still being available with the J&J brand until 2020 and generic versions of the drug continuing indefinitely at this stage.

K. Kidney Damage. Fluoroquinolone antibiotics can cause kidney damage including renal failure. A 2013 study found a twofold increased risk of acute kidney injury requiring hospital admission with the use of fluoroquinolone antibiotics among adult men.

L. Levaquin. Levaquin is the brand name of a type of fluoroquinolone antibiotic manufactured by Janssen Pharmaceutical (see ‘Johnson & Johnson’ entry above). The drug’s scientific name is levofloxacin. Levaquin has been the subject of hundreds of lawsuits by patients who have suffered debilitating side effects from this drug.

M. Mitochondrial Toxicity. The mitochondria are rod-shaped organelles that are the ‘power generators’ of cells, ‘turning sugars, fats and proteins that we eat, into forms of chemical energy that the body can use to carry on living’. Fluoroquinolones damage mitochondrial DNA, resulting in a range of disabling symptoms in sufferers, including pain, weakness and fatigue.

N. Nerve Damage. Many sufferers of fluoroquinolone toxicity syndrome experience nerve damage, often resulting in peripheral neuropathy. Peripheral neuropathy is a condition in which the nerves in the peripheral nervous system become damaged. Usually the disorder affects the nerves that provide sensation, which causes pain, tingling, and burning symptoms of the nerves affected, frequently, but not limited to, the hands and feet. The U.S. Food and Drug Administration enhanced its warnings of fluoroquinolone side effects in 2013 to include ‘the potential for irreversible peripheral neuropathy’.

O. Oxidative Stress. ‘Oxidative stress occurs when excess oxygen radicals are produced in cells, which could overwhelm the normal antioxidant capacity. [Oxidative stress can lead to damage of] proteins, lipids, and DNA, which could lead to cytotoxicity, genotoxicity, and even carcinogenesis when damaged (mutated) cells can proliferate.’ A scientific study conducted in 2011 demonstrated that fluoroquinolone antibiotics are a significant cause of oxidative stress, with tests revealing this stress was ‘greatest 5 days after exposure to ciprofloxacin and levofloxacin therapy, which indicates the formation of reactive oxygen species as in previous studies with fluoroquinolones. These results [were] further supported by [a] decrease in plasma antioxidant status by 77.6% and 50.5% for ciprofloxacin and levofloxacin respectively’24. They concluded their report with the finding that ‘[t]here was a considerable increase in lipid peroxide levels indicating an enormous oxidative stress’ in patients taking fluoroquinolones and suggested that increase in oxidative stress may be responsible for the pathological mechanism of tendinitis (see ‘Tendon Ruptures’ entry below).

P. Pain. Pain is often (but not always) the first symptom fluoroquinolone toxicity sufferers experience. This can occur after the first dose taken. The pain usually begins in the legs or feet before spreading to other parts of the body. The pain will often be constant and remain for months or years. Pain in joints, hands, feet, tendons and nerves (see ‘Nerve Damage’ entry above) is common, ranging in severity from a dull ache to, extreme, sharp, unbearable pain. Many case studies document patients living with extreme, ongoing pain that cannot be medically managed.

Q. Quinolones. Quinolones are an earlier generation of the current fluoroquinolone family of antibiotics (although quinolones are still in limited use). A fluorine atom was added to the quinolone’s central ring system, thus creating fluoroquinolones, which have proven to be more effective in disrupting bacterial DNA than the quinolone form of the antibiotic.

R. Relapse. Many sufferers of fluoroquinolone toxicity syndrome report (often multiple) relapses of their symptoms, sometimes years after the initial onset of their illness. This is likely due to the multi-system, cellular and oxidative-stress nature of this toxicity. Sometimes a relapse can be caused by a specific trigger, such as the subsequent use of NSAIDs (such as ibuprofen) or steroid medications.

S. Suicide. There have been thousands of reported cases of deaths linked to fluoroquinolone toxicity (over 6500 to the end of 2015 in the U.S alone). This number, however, does not include the large number of people who have taken their own lives after experiencing sudden and extreme mental health side effects from fluoroquinolones. A group of doctors wrote an article for the European Journal of Internal Medicine in which they report on the concerning number of suicides or attempted suicides by patients on fluoroquinolone antibiotics. They cite that in the United States, 40% of reported fluoroquinolone-related suicide events occurred within two weeks of taking fluoroquinolone medication. Many of these patients had no previous mental health issues.

T. Tendon Ruptures/Tendonitis. One of the most common adverse side effects of fluoroquinolones is tendon damage, including tendon ruptures, frequently to the Achilles tendon. This is due to a combination of factors, including fluoroquinolones being responsible for destroying collagen (collagen is a major component of tendons). A study in 2015 investigated the impact of fluoroquinolones on collagen and discovered that fluoroquinolones ‘were associated with almost a tripling of the risk of tendon ruptures—a recognised collagen-associated adverse event induced by these medications.’ Perhaps of even greater concern was their finding that ‘fluoroquinolones were associated with a similar increase in the risk of aortic aneurysms.’

U. Under-reporting. It is almost certain that fluoroquinolone toxicity is under-reported. Drug safety professionals estimate that only 10% of adverse events (across all drugs) are reported to the FDA every year, in part due to physicians having no requirement or incentive to report adverse reactions. It is highly likely that the rate of adverse reaction reporting for fluoroquinolone antibiotics is lower still, for the following reasons:
a. The noticeable symptoms of fluoroquinolone toxicity can take months to manifest, thus making it more likely that the patient does not connect their ‘new’ symptoms with a course of fluoroquinolone antibiotics they took previously.
b. Many medical practitioners are still unaware of, or refuse to acknowledge, the damage that fluoroquinolone antibiotics can cause. This is evidenced in the frequency with which these antibiotics are prescribed for uncomplicated (suspected) infections when safer alternatives are available. As one report states: ‘Despite these seemingly significant numbers and overwhelming reports from patients, physicians continue to prescribe fluoroquinolone antibiotics unsystematically, against US Food and Drug Administration recommendations. Thus, adverse reactions to fluoroquinolones are often not reported by physicians, nor by the patient themselves. Even though significant under-reporting is extremely likely, there are over 200,000 reported cases of adverse reactions to fluoroquinolone antibiotics in the U.S alone, tens of thousands of these being serious and over 6,000 reported deaths. 1,498 cases of adverse reactions to Ciprofloxacin have been submitted to Australia’s Therapeutic Goods Administration (up to 18 January 2019).

V. Vitamins and Minerals. There is no quick cure or treatment for fluoroquinolone toxicity. Healing plans usually focus on rest and a diet/supplement regime which aims to replenish those essential elements that have been depleted or damaged by the drug. One of the most important mineral supplements is magnesium. This is because fluoroquinolones deplete magnesium from the body and also because toxicity from fluoroquinolones is reduced by the supplementation of magnesium (as proven through tests conducted on both humans and rats).

W. Weakness and Fatigue. Alongside pain, muscle weakness and fatigue are often the first symptoms fluoroquinolone toxicity sufferers experience. The weakness is likely a result of the cellular damage caused by the drug, including damage to the mitochondria in the cells (see ‘Mitochondrial Toxicity’ entry above). As a consequence, many sufferers are (mis)diagnosed with CFS/ME (Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis).

X. The X Factor (the unknowns). Scientists and medical professionals are still discovering all the ways in which fluoroquinolones adversely affect the body and mind. Much is still unknown about the long-term impacts of this drug. One of the more frightening discoveries in recent years is the likelihood that fluoroquinolone toxicity sufferers are at a significantly higher risk of developing Parkinson’s Disease and Alzheimer’s due to the long-term oxidative stress caused by this drug and by the damage it causes to the cells’ mitochondria (see ‘Oxidative Stress’ and ‘Mitochondrial Toxicity’ entries above). In 2014, A U.S. medical practitioner, Charles Bennett, who has conducted a great deal of research on fluoroquinolone toxicity, filed a citizen’s petition with the FDA seeking to expand the black box warning to include mitochondrial toxicity as one of its side effects, with the concern that it can lead to Parkinson’s Disease and Alzheimer’s.

Y. Years. People who suffer from fluoroquinolone toxicity often take years to recover, whilst others experience little improvement in their symptoms, even years after first suffering toxicity (as evidenced by some of the speakers at the EMA public hearing in June 2018).

Z. ZZZZ (sleep). The European Medicines Agency’s 2018 public hearing and investigation into fluoroquinolones concluded that sleep problems (including nightmares and insomnia) were among the many long-term side effects of fluoroquinolone toxicity. Sadly, much of the medical profession world-wide seems to have no trouble being asleep to the dangers of fluoroquinolones, with doctors continuing to prescribe this drug in the millions each year for uncomplicated health conditions where safer, as effective antibiotics are available. Patients also continue to report having been prescribed fluoroquinolones without being given any information about the risk of serious, potentially permanent, side effects.

References:

  1. The Marshall Protocol Knowledge Base. “Fluoroquinolone Antibiotics”: https://mpkb.org/home/othertreatments/antibacterials/fluoroquinolones
  2. Arentz Law Group. “Cipro Lawsuit Alleges Bayer Actively Concealed Irreversible Peripheral Neuropathy Risks.” https://arentzlaw.com/defective-drug/cipro-lawsuit-peripheral-neuropathy/
  3. Dr Joseph Mercola. “Antibiotic Alert: The Drug the Doctor Ordered Could Cause Deadly Side Effects.”
    https://articles.mercola.com/sites/articles/archive/2012/10/20/fluoroquinolones-side-effects.aspx
  4. Oncology Practice. “Fluoroquinolone-related neuropsychiatric and mitochondrial toxicity: a collaborative investigation by scientists and members of a social network.” https://www.ncbi.nlm.nih.gov/pubmed/26955658
  5. Nucleic Acids Research. “Ciprofloxacin impairs mitochondrial DNA replication initiation through inhibition of Topoisomerase-2.” https://academic.oup.com/nar/article/46/18/9625/5088042
  6. European Medicines Agency. “Quinolone- and fluoroquinolone-containing medicinal products – European Commission Final Decision.” https://www.ema.europa.eu/en/medicines/human/referrals/
    quinolone-fluoroquinolone-containing-medicinal-products
  7. FDA Drug Safety Communication. “FDA updates warnings for oral and injectable fluoroquinolone antibiotics due to disabling side effects.” https://www.fda.gov/drugs/drugsafety/ucm511530.htm
  8. U.S. Food and Drug Administration. “FDA advises restricting fluoroquinolone antibiotic use for certain uncomplicated infections”. https://www.fda.gov/Drugs/DrugSafety/ucm500143.htm
  9. U.S National Library of Medicine. “Glutathione.” https://pubchem.ncbi.nlm.nih.gov/compound/glutathione
  10. Journal of Young Pharmacists. “Oxidative Stress Induced by Fluoroquinolones on Treatment for Complicated Urinary Tract Infections in Indian Patients.” https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3249743/
  11. Drug and Chemical Toxicology. “Ciprofloxacin‐Induced Glutathione Redox Status Alterations in Rat Tissues.” https://www.tandfonline.com/doi/abs/10.1081/DCT-120037504?journalCode=idct20
  12. Medical Xpress. “Certain antibiotics tied to deadly heart vessel tears: FDA.”
    https://medicalxpress.com/news/2018-12-antibiotics-tied-deadly-heart-vessel.html
  13. Al Jazeera. “Left paralysed from Fluoroquinolone antibiotic toxicity.”
    https://www.aljazeera.com/indepth/features/2017/09/left-paralysed-fluoroquinolone-antibiotic-toxicity-170919135407632.html
  14. RX Injury Help. “Janssen Discontinued Levaquin Production as Concerns Over Fluoroquinolone Side Effects Grow.” https://www.rxinjuryhelp.com/news/2018/07/18/janssen-discontinued-levaquin-production-as-concerns-over-fluoroquinolone-side-effects-grew/
  15. Drug Injury Law: Medical and Legal Information. “Johnson & Johnson settles 845 Levaquin Lawsuits.” https://www.drug-injury.com/drug_injury/2012/11/johnson-johnson-settles-845-levaquin-lawsuits.html
  16. Arentz Law Group. “Levaquin pulled from market to avoid lawsuit.”
    https://arentzlaw.com/defective-drug/jj-stops-levaquin-sales/
  17. Canadian Medical Association Journal. “Risk of acute kidney injury associated with the use of fluoroquinolones.” https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3708027/
  18. Thomas J Henry Law. “Johnson & Johnson Settles Levaquin Lawsuits”. https://thomasjhenrylaw.com/blog/dangerous-drugs-devices/johnson-johnson-settles-levaquin-lawsuits/
  19. Mitochondrial Biology Unit. http://www.mrc-mbu.cam.ac.uk/what-are-mitochondria
  20. Oncology Practice. “Fluoroquinolone-related neuropsychiatric and mitochondrial toxicity: a collaborative investigation by scientists and members of a social network.” https://www.mdedge.com/hematology-oncology/article/106661/patient-survivor-care/fluoroquinolone-related-neuropsychiatric
  21. Journal of Investigative Medicines: “Permanent Peripheral Neuropathy: A Case Report on a Rare but Serious Debilitating Side-Effect of Fluoroquinolone Administration.” https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4528905/
  22. Medicine Net. “Peripheral Neuropathy Causes, Symptoms, and Treatment Medications.” https://www.medicinenet.com/peripheral_neuropathy/article.htm#peripheral_neuropathy_definition_and_facts
  23. Science Direct. “Oxidative Stress.” https://www.sciencedirect.com/topics/neuroscience/oxidative-stress
  24. Journal of Young Pharmacists: “Oxidative Stress Induced by Fluoroquinolones on Treatment for Complicated Urinary Tract Infections in Indian Patients.” https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3249743/
  25. Journal of Pain & Palliative Care Pharmacotherapy. “Intractable Acute Pain Related to Fluoroquinolone-Induced Peripheral Neuropathy.” https://www.ncbi.nlm.nih.gov/pubmed/28358229
  26. US National Library of Medicine. “Fluoroquinolone-induced serious, persistent, multisymptom adverse effects.” https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4600819/
  27. US National Library of Medicine. “Fluoroquinolones interactions with nonsteroidal anti-inflammatory drugs.” https://www.ncbi.nlm.nih.gov/pubmed/15176310
  28. European Medicines Agency. “EMA public hearing on quinolones and fluoroquinolones.” https://www.ema.europa.eu/en/documents/other/public-hearing-quinolone-fluoroquinolone-written-interventions_en.pdf
  29. Nature. “When antibiotics turn toxic.” https://www.nature.com/articles/d41586-018-03267-5
  30. European Journal of Internal Medicine. “Fluoroquinolone-associated suicide.” https://www.ejinme.com/article/S0953-6205(18)30284-X/fulltext
  31. The Journal of Clinical and Aesthetic Dermatology. “The Risk of Fluoroquinolone-induced Tendinopathy and Tendon Rupture.” https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2921747/
  32. BMJ Journals. “Fluoroquinolones and collagen associated severe adverse events: a longitudinal cohort study.” https://bmjopen.bmj.com/content/5/11/e010077
  33. PSQH: Patient Safety and Quality Healthcare. “A Closer Look at FDA’s Adverse Event Reporting System.” https://www.psqh.com/analysis/a-closer-look-at-fdas-adverse-event-reporting-system/
  34. Oxidative Medicine and Cellular Longevity. “Treatment of the Fluoroquinolone-Associated Disability: The Pathobiochemical Implications.” https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5632915/
  35. Journal of Investigative Medicine. “Permanent Peripheral Neuropathy: A Case Report on a Rare but Serious Debilitating Side-Effect of Fluoroquinolone Administration.” https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4528905/
  36. Therapeutic Goods Administration (Australia) Database of Adverse Event Notifications – medicines https://apps.tga.gov.au/PROD/DAEN/daen-report.aspx
  37. American Society for Microbiology. “Diminished Ciprofloxacin-Induced Chondrotoxicity by Supplementation with Magnesium and Vitamin E in Immature Rats.” https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1803142/
  38. ME Association UK. “Update: MHRA issues new restrictions and precautions for Fluoroquinolone antibiotics 29 March.” https://www.meassociation.org.uk/2019/03/update-mhra-restrictions-and-precautions-for-fluoroquinolone-antibiotics-28-march-2019/
  39. CBS Chicago. “Safety Advocate: Powerful Antibiotics Being Overprescribed.”
    https://chicago.cbslocal.com/2015/03/11/safety-advocate-powerful-antibiotics-being-overprescribed/
  40. European Medicines Agency. “Public Hearing on quinolone and fluoroquinolone antibiotics” .
    https://www.youtube.com/watch?v=1vao8o5NGUc
  41. European Medicines Agency. “Disabling and potentially permanent side effects lead to suspension or restrictions of quinolone and fluoroquinolone antibiotics.” https://www.ema.europa.eu/en/news/disabling-potentially-permanent-side-effects-lead-suspension-restrictions-quinolone-fluoroquinolone

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The Last Time

Melissa’s Bio – I write from northeast Ohio where I live with my husband who is an attorney and with our two sons, 16 and 21, and our labradoodle, Luna(tic). In 1990 I graduated from Kenyon College with a B.A. in psychology and in 1996 I graduated with an M.A. in Counseling from John Carroll University. I recently survived 8 years of homeschooling with my sense of humor and some brain cells intact. I have been recently published in the 2017 Poet Haven’s Digest, Strange Land and The Poet’s Haven’s Digest, The Distance Between Insanity and Genius. My work also appears in issues 6, 7, 11, 12 and 14 of the Blue Nib Literary Magazine and The November issue of The Write Launch Magazine.

This is a guest post written by Melissa. If you are interested in having a guest post published on www.floxiehope.com, please contact Lisa through THIS LINK

Intro

Sixty to seventy percent of Americans take at least one prescribed drug during a time when new drug approvals have reached a 19-year high. Prescription drugs are the 4th leading cause of death in the USA with conservative estimates showing that 128,000 people die each year from taking prescription medications as prescribed. Properly prescribed drugs cause 1.9 million hospitalizations with another 840,000 patients hospitalized after being given a drug or drugs that cause serious adverse reactions. Here in the USA there is a 1 in 5 chance a drug will cause a serious reaction after approval.

There are 45 pages of side effects for the Fluoroquinolone antibiotic, Ciprofloxacin, on the website, Rx List. That’s 11,442 words describing potentially devastating side effects. Cipro was made in 1981 by Bayer, a German company. In 1987 the drug was approved by the FDA. By 1991 Cipro was available for intravenous therapy. Cipro was meant to treat serious life-threatening conditions. Instead the antibiotic has been overprescribed for simple sinus infections and the suspicion or presence of uncomplicated UTIs. Today it is widely prescribed along with other Fluoroquinolones.

Cipro was Black Box Labeled in July of 2008 because the drug was causing tendonopathy and tendon rupture. In February of 2011 the risk of worsening of symptoms for those with myasthema gravis was added to the Black Box Label. In August of 2013 a mandate was added to update the labels to describe the potential for serious irreversible peripheral neuropathy. In May of 2016 the FDA Advisory Committee advised that Fluoroquinolones should only be reserved for serious life-threatening conditions and only after other antibiotics were no longer an option. This advisory was given specifically to limit potentially permanent disability due to side effects occurring together. This group of side effects is called Fluoroquinolone Associated Disability (FQAD).  Cipro damages not only tendons but connective tissue and cartilage as well causing complications that result in painful disability. There are no accurate numbers on how many people are suffering with permanent disability due to FAD. When the last Black Box label was announced the FDA admitted that it had no intention of disseminating this information to physicians instead they commented that the onus is on doctors to stay abreast of prescribing related issues.

In 2012 I was given Cipro even though I had no infection and despite my objections about being given this antibiotic for purely preventative purposes I was persuaded by the physician who insisted that I take it. When I complained to the nurse explaining that my father in law had suffered a ruptured achilles tendon after just days of taking Cipro I was told that patients do not get to decide about what medications are acceptable and what medications might not be. I took it. About 3 weeks after taking it I started having intense pain in both hips. By late 2012 I was in surgery to repair a tendon rupture and muscle tear in my right hip. By the beginning of 2013 despite 8 months of targeted physical therapy my right leg had become weak and unpredictable in its ability to support me. It had become unresponsive and painful when I was attempting to stand or walk or even turn over in bed. By 2014 every activity in every aspect of my life had become compromised from tendonopathy, muscle weakness, and pain in both legs and hips. The tendons in my wrist hurt to weight bear. I have muscle spasms in my legs and hips. I have nerve pain in my fingers and feet. It’s permanent and disabling.

Like many people harmed in some way and unable to find answers from the medical community available in my area I have spent time meeting folks like me online. There are thousands and thousands of people online in closed groups, including physicians, looking for answers. The information has been valuable for me from those who have survived with FQAD although there are no cures and physicians and pain management doctors, including my own, mostly dismiss patients with various suggestions such as lose weight, eat better, and exercise. It helps to know I was dismissed in the same way others have been. It’s not me.

The interactions online have been devastating as well as helpful to me. When there are no answers, when people are cut off from appropriate pain medication, when people need to self-eject because days and nights are unacceptably horrific it is hard to experience this over and over and over. Losing friends while they lose their lives to FQAD feels like looking into a broken future. It is important for the medical community and pharmaceutical industry to understand that these people are committing suicide because their FQAD diagnosis came on top of other conditions already debilitating and largely untreatable and because there is no way to treat the damage from Fluoroquinolones. These folks have lost their marriages, their jobs, their homes to bankruptcy, their independence, their ability to sleep, their ability to love anything in life because of the pain and the loss. And because no one is listening and right now there is little hope that prescribing guidelines will change there will be more ‘eventualities’ and ‘acceptable casualties’ That is unacceptable.

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The Last Time

The first time I was born I came from Nowhere and Nothingness, undamaged, tended, cradled in the warmth of the inviolable vow of the Keepers of the hands that caught me and kept me and held me. From their places of knowing and despite their own scars their hands were soft and hard and supportive and real in their releases while I was just a Coming, a Going, a Staying, a Leaving, a Resident of a perdurable world which of course was a comfortable lie or miscalculated sentiment or just inexperience on my part. Those who labored for me also labored with me and I was bound up in a hope unfading that the dishonorable or unethical would not touch me or mar me. The foolish and unscrupulous dissected choice into gains and losses without care for consequences I knew but I was undaunted, naïve.

The first time I was born I was asleep in the warmth of the unknown, protected and sheltered, swaddled in my life untouched by the harsh. I was found and believed and defended and immersed in my unknowing. Clean air coursed through my lungs while pure sunlight bathed my retinas and the bitterness of unfixable injustice was only a storyline not any reality that would brush up against my sensibilities. Just an idea that tasted uncomfortable for the duration of a conversation. Just a sensation for consideration. All important things in life seemed changeable, controllable, knowable.

This birth was prolonged and lingering in its yearnful craving for logic or feeling in all things.

The second time I was born I clawed my way through a blanketed web of sticky greyness. My legs heavy and disconnected suddenly seemed so incredibly important in ways that I had never considered before and I experienced a violently urgent longing for every exquisite movement they had ever given me. My leg, when the tendon tear was complete, was useless and unable to carry my weight or the weight of the Last Times that I had no idea were actually Last Times.

A night time of regrets descended. A towering waterfall of Last Times rushed past me icy, impossible to grasp, oblivious of my needful wanting. When was the Last Time I ran? Give me a bucket to scoop up these memories. The Last Time I walked up steps with both legs? Carry me away to places I cannot see now. The Last Time I walked without pain? Give me back the steps taken from me. The Last Time I stood knowing my leg would respond when I told it to? What has been taken from me? Pouring itself into endless miles of new geography unmapped and darkly shadowed my waterfall gushed itself endlessly until it was a trickle of useless dirty water and the landscape around me was flooded with silty, mucky, old woulda beens. Debris from shattered relationships with myself drifted dismembered, mutilated, and lost to the pitch that swallowed the run off.

The Last Time I held what I thought was the manuscript to my life I was, as it turned out, only holding some damn preface. And what had been me, dammed up, wished upon, struggled over, picked apart, surgically carved up, taken down, worked over, out beyond past, in love with, dedicated to, resolutely advocated for in full view of every rough draft of myself, was washed away in a tsunami of wretched despair.

My head was clouded and thick with denial, clogged and dragged down with an anesthesia like kidnapping, congested with a paralyzing realization that resistance was futile but contractually obligatory. The seconds bled over into one another lost and wandering and stumbling as if time and space around me could not bend to this traitorous reality selling cures masquerading as magic in the forms of compromised elixirs one hundred percent legal and available and fillable all on the same day.

The entire place flooded and fortified with loneliness and then left abandoned and untended, desolate in its palpable ending, reeked of permanence. And something else too. Lies. Everywhere the stench of fatalities from lies. Lies believed and nurtured and loved into a bastion of respectability. “These things just happen. No one is to blame.” Lies trained specifically to bring down high value targets like strength and fortitude. “Get up. Your tolerance for pain is turning into shit.” Lies groomed for deception and misdirection. “If you fight hard enough you can leave this place whole again.” Lies meant to ambush and stalk and take hostages. “You should be able to do this. You are weak.” Lies deadly enough to squash up hope and dispense with it immediately. “He will leave you if you are this physically broken.” Lies programmed to go straight for the heart because after all that is where my truth lives. “Strong people tolerate quietly physical things that hurt them.” The truth is a dangerous thing. It is the most treacherous of all treacherous things. It will kill you when you have it and it will kill you when you don’t.

I am fine,” the lies panicked in my head drowning out any chance for rational thought. The intense pain, tore into every corner of me obliterating my barricades set up for safety and security. Dwellings completely my own, private places kept carefully organized were blown wide open, ransacked, my personal stuff raided, strewn far and wide. “You are lost and disbelieved and undefended, but I’ll keep you safe,” the lies crooned oily and certain, “until the situation stabilizes.” My confidence hung shredded like the tendon in my hip with little bits of myself left minced up trailing along behind me in a sad slick of denial. “Keep fighting. Be a warrior. Fight like a girl. Your plan of attack just needs some recon,” the lies encouraged. “You get what you deserve. Don’t surrender.” They led me, these lies, in little vicious, nasty circles of forgeries and falsehoods that started long ago on some researcher’s white board in some lab somewhere with words like ‘eventualities and acceptable causalities’ bantered about. They reached with dishonorable and shortsighted malice into the recesses of my reason and into the core of my psyche interrogating me under scorching lights and torturing me with questions that had no answers until I surrendered, until I gave what they wanted but not without a last sad gasp of hope whispered in desperation, “I’m not the one you are looking for.”

Unprincipled and perverted the lies infected everyone instantly, begging them to believe the untruths they coaxed so easily from their lips. After all this time, I have learned that some were just never meant to handle another person’s truth at all. The truth is loudly persistent and exhaustively complete in its ruthlessness.  Shrinking from the rebellious heat of the siege and the deafening rail of the formidable weaponry that comes with the minute by minute struggle of fighting something horrible in its permanence, something relentless in its ability to execute a flawless attack is normal. “You’ll be okay,” was the refrain always uttered with eyes averted meant with compassion but delivered with the kind of solemnity reserved for times when you really mean to say, “Sorry. There is nothing anyone can do about this.” Pain is always exquisitely, breathtakingly new to the person experiencing it. It so quickly loses its originality to those observing it.

I thought it would take so much more to drag me away from myself but in reality, all it took was a little pill loaded up and rattling hollow in a brown prescription bottle capped and labeled all official like so unassuming in its white purity and so mundane, so familiar to everyone, and raised to such heights of expectation for curative properties that it really almost seems impossible that something meant to save lives can slowly end them too.  What was needed in the end was the method of delivery: overprescribing, ignorance, and an entire industry corroded with the backwash of greed content to offer a whole category of antibiotics via random bullet spray rather than with thoughtful consideration. Weaponized formulas lurk waiting to be dispensed to a public that truly has no way of knowing who will be a casualty and who will escape harm. An industry primed to shape cures into tablets to silence the call of uncertainty, designed to produce capsules to ease the burn of anger, to crank out lozenges to numb the trivia of daily life, to manufacture gelcaps to remedy the longing for the past, to press tinctures to blunt the sting of the truth, to push potions to fill in the gaps of emotional and intellectual weaknesses, and to dispense antibiotics inappropriately to patients  without life threatening infections or any infection at all is an industry profiting off of  our physical and emotional livelihoods.

These antibiotics need to be aimed before they are fired. It is unethical to prescribe Fluoroquinolones with the potential for permanently painful disability to people who do not require them. I have taken any Fluoroquinolone for the Last Time but there are others out there who are targets awaiting a bullet. They will have no idea if their medication is locked and loaded. The truth is I was collateral damage. Dispensable. Just a person caught up in the humongous machine that is our healthcare system currently. Physicians who see patients struggling to live in shadow of FQAD need to know the truth about what it is like to cope with being permanently disabled by something that should never have been prescribed or what life is like living in constant pain from a medication that ruins tendons, connective tissue, and cartilage. It is dark where we are. It is lonely and ever changing as new symptoms emerge. Anger stirs here constantly with no place to go. And for those with few financial, emotional, and familial resources FQAD is fatal very quickly.

Questions abound here echoing off the walls of what is left of ourselves as we canvas for new paths, new ideas, any hope at all. I cannot ask the corporations making these antibiotics if they are aware of the high cost they have exacted on millions of lives but since corporations are people too I would like to. Do you know what you are taking from us? How many Last Times are enough for you? Could you tilt your head up a bit, so I can see your eyes before you answer? I need to see your eyes. The truth is always in the eyes. While I am waiting for answers, I’ll search the internet for new research and articles. I’ll hope for people with the courage to meet my gaze on my worst days because when I leave myself I need other people to understand where I go and how hard it is to make it back.

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A Plea For Doctors to Believe Us

This is a guest post written by Stephanie. She has faced disbelief, and even abuse, from people in the medical fields. Sadly, I think that her experience will be familiar for many of you. Know that you are not alone in your frustration, fear, or anger. 

Dear Doctors,

Let me start by saying I have more friends than I can keep up with. That I am loved and in a such a healthy relationship more so than most. I am not a hypochondriac.

When I say I am fine it means that I am managing my pain with cannabis. When I have attacks please try to understand that I have been abused by the medical system to the point where it is terrifying for me to go to a western medical doctor. I had a doctor look into my eyes while I was pleading with him to help as I was choking say I do not know what is happening to you maybe we can wrap you in a blanket. The nurses asked him if he was going to do any tests. He said no I don’t know what’s wrong with her. I will write up her paper work offer her some pain medication and release her once she is calm. I am not exaggerating that really happened.

I have been told, “you are tachycardic you need to go to the ER right now.” The nurse who “helped me” rolled her eyes at me and said, “so you have pain.” My arm was curled up by my chest from the pain and she said, “you’re going to need to pull that arm down for the x-ray.” I said, “it hurts when I put my arm down.” Her response, “well do you want an x-ray?” Nothing was found she said, “you’re fine go home.” No other testing was done because the Doctor who sent me was an integrative doctor and I could hear them making jokes about my doctor from outside the room and I was changing.  They never checked my blood pressure I kept saying I was dizzy everything was ignored because the x-ray was “normal”.

I have sat and told doctors about being poisoned and been told, “well, you would know more about that then I would.” This is coming from two movement specialists who you would assume would be familiar with side effect s from medication. The last one proceeded to tell me about all of his degrees he proceeded to tell me about how he trained the doctor who I wanted a second opinion from as she made me cry and told me I was making it up. I said I really don’t care what you think of her and would like you to please look into my illness on floxie hope maybe you can help me. He then proceeded after 15 minutes of telling me mostly about himself probably five minutes of having me move and watching me have attacks. He said I needed friends and my naturopath was stealing money from me. This is after admitting he knew nothing about side effects of the medications I took. I sat in the car and cried for about 15 minutes. I said to myself that day no more abuse. No matter how bad the pain gets, I am done with western medical doctors unless I know they will believe the side effects that are listed on the side of a pill bottle.

I write this as a plea for those who cry in their car as I have, for those who lay in their bed or couch day after day when you feel like your heart is pounding in your chest as I do. When you do all the breathing exercises you are supposed to. where I sit there and say at least I have a roof over my head and food in my tummy so even if I have nerve damage in my heart and this is my lot, it’s better than most.

Please understand we are very ill. More ill than most could ever take. We fight every day to live with a thirst for life that most take for granted. That it’s scary when the only covered forms of help try to tell you that you are cry or lonely.

That there is no way to fight back but stop going to western medicine doctors unless you are told they are “safe” and will listen. That we need to change this system of bowing down to the almighty pill. Pills can cause harm. For those like me who live every day in pain we need the help of the healthy. We need you to hear us and see we are not crazy we are not lonely, we have simply been abused by a system that is bought and paid for by the pharmaceutical companies. The healthy are the ones we need your kindness and support. We need you to question we need you to love us and be kind to us. To hear our stories not with judgement but with love. Please read our stories, please ask your doctors if pills are really the first needed step or the easy way out for them. Ask your doctors if you have a bacterial or viral infection.

Please join us in our fight. Please stand by us because it is a very scary world once you have been abused by the medical system. We need to end this abuse and we need your help to do it.