antibiotic neuropathy Archives

From Healthy to Barely Functioning After Taking Bactrim and Keflex

Published on May 10, 2023

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Up until July of 2014, when I was prescribed Bactrim and Keflex, I was truly in amazing physical condition. I was a 36-year-old male, who would run at least three miles every other day. Many times, I would do squats or some form of leg resistance training before my runs. I would sometimes do up to 400 push-ups throughout the day. I weighed 205 pounds, and was 5’10.

That July, I would get a tattoo. I had been to the parlor many times before, so it wasn’t such a big ordeal for me. I did have a new, different artist this time though. Shortly after getting the tattoo, I knew something had gone wrong. My arm was red, warm, and swollen. I contacted my doctor the next morning, and he called in a prescription for Keflex (500mg 3x/day). I took the medication for one full day, but it seemed to be getting worse. I decided to visit my pharmacy and speak to a pharmacist to get their opinion. When I told him what my doctor had prescribed, he told me that would not be enough to do the job. He recommended that I visit the ER. immediately. I did just that and was given Bactrim. I was also given a prescription that would double my original Keflex dosage.

I began taking everything right away and thought the ordeal would be over quickly. I went to bed that night and was woken up at around 2 am by an indescribable jolt. It felt a sudden weakness centered in my spine, but it radiated throughout my body. I knew something had gone very wrong. I woke my wife up from a deep sleep and told her I was feeling funny. I was probably too shocked to relay how terrible I actually felt. How could she know? “I think the medication is making me feel funny,” I uttered. She thought maybe I was adjusting to it. I thought of surprising her by saying I should visit the ER again, but I just lay there for the rest of the night. I was in awe at how I felt, and wonder to this day why I made this decision. “It’s only antibiotics,” I thought.

Somehow I went to work the next day. I was so weak that I had a hard time turning the steering wheel on my car. I struggled to pull doors open at work. I had taken the drugs again that morning. No matter how bad I felt, I never thought anything would be permanent, and I was tired of dealing with the infection. I then noticed that my heart had slowed down, and it seemed it never varied in speed. If I forced myself to strain in any way, it wouldn’t speed up; it would simply thump at that speed. I was also getting lightheaded, and I had dizzy spells. This wasn’t anything I was used to, so I paged a cardiologist I had seen in the past at a prominent Boston hospital. The doctor told me that Bactrim and Keflex were “benign,” and could not cause me any harm. The next thing I experienced was a toxic feeling in my head. I felt as though I had been poisoned. I had brain fog, and my ears and head felt like they were full of cotton. As I tried to sleep, I saw flashes of light and felt as though I could go into convulsions at times. I knew at that point, I had to revisit the ER.

“Tough It Out,” They Told Me

I went to a different local hospital to get a different point of view on the issue. In hindsight, it was another mistake that I didn’t visit the prescribing hospital. I told the doctor everything, and the infection still hadn’t made any remarkable improvements yet. I told him I could not afford a problem, and I was afraid to take either Bactrim or Keflex any longer. Although my WBC was low, he told me to “Tough it out” (literally). He told me I must have been a tough guy considering I had tattoos. I thought this was a ridiculous comment, but there were many more to follow. I stayed on the meds for 5 more days, completing the course. By this point, I had pins and needles in my feet, a sore in my mouth, a sore on my stomach, immediate weight loss, bladder pain, dizziness upon standing, and burning during urination. I was dropping weight quickly. I was visiting my PCP, trying to see a neurologist at a Boston hospital, and visiting ERs locally, as well as in Boston.

One morning, I woke up in cold sweats. I noticed I had urinated a fair amount in bed, and visited the ER yet again. I had completely lost the urge to urinate for six weeks or so. I was so lightheaded that I felt drunk constantly, day and night. Nobody had any answers at all. By that point, I was researching the drugs online. I found a site dedicated to Bactrim reactions. It was an old site, and I believe it was from England. It wasn’t good news at all. Bactrim seemed to be a total poison. I was reading reviews before, during, and after work. I was starting to panic. I was unable to cut grass or do anything at all other than force myself to work each day. I had lost 20 pounds within two months. My heart was fluctuating like crazy. It seemed to be missing beats and stopping at times. I was put on a monitor, and by the next morning, I was told it had stopped for 4.1 seconds. It was in constant fluctuation. I was starting to get sharp pains in my feet, hands, head, eyes, chest, and everywhere else. They would go from dull to sharp. They varied in length or duration, but it was intense.

Post Bactrim Autonomic System Dysfunction

The tattoo was healed, but everything else was now a problem. Eventually, after being told I was a crazy person by my neurologist, he gave me autonomic testing. He had given me a brain and spinal MRI, but they proved to be normal. I also had other neurological tests that were unremarkable. However, the autonomic testing was abnormal. I failed the “Tilt Table” test, as well as the QSART sweat test. Although the doctor thought the whole Bactrim thing was a coincidence, he admitted he was eating some “Humble Pie” at the moment. He diagnosed me with POTS (Postural Orthostatic Tachycardia Syndrome).

On the horizon symptom-wise, I was experiencing massive constipation fluctuating with diarrhea, loss of bladder function, and underactive bladder to leaking, with overactive bladder. My weight was still dropping, I was getting prickly sensations everywhere, and my hands were blue. My ears ring, my eyes are dry, and I even smell smoke or other scents that are not there.

Eventually, another neurologist gave me a skin biopsy, checking for small fiber neuropathy. That test was abnormal as well, and it appears I was not sweating at all.

To this day, I deal with many of the same symptoms. Overall, some have improved to a degree.

Six Year Later: Still Struggling

I now struggle to keep my weight at 167, which is about forty-five pounds under my normal. My appetite is very good the majority of the time, but I still struggle. My muscles are smaller and don’t recover quickly. I have some symptoms like periodic numbness in my small fingers due to ulnar nerve damage, eye floaters, and severe spinal pain. I experiment with many diets considering my ongoing food sensitivities. I take LDN (Low dose Naltrexone), CoQ10, L-Carnitine, creatine, fish oil, and alpha lipoic acid. I wear compression stockings at times, take salt pills, and keep a jug near my bed at night to urinate in so I don’t get dizzy when I stand. Situations like these affect all aspects of your life. Some doctors recommend IVIG, and others tell me to steer clear. I still do my research regularly. I wonder if an autoimmune condition was triggered, or if my mitochondria/nerves were damaged. I wonder why no doctor has any idea what to say. I wonder if deep down they really know, or if it goes over their head and only the “higher ups” know. I have a feeling that someone in the field is familiar with the poisons being prescribed. Everyone is reluctant to admit that there is an issue. Nobody wants to be sued or to have to pay for the development of another antibiotic.

When my father was 36, he had the flu. He was put on a fluoroquinolone. He has had severe brain fog, major fatigue, restless leg syndrome, and a plethora of other mysterious symptoms ever since. He even had trouble with his Achilles tendon. He had an abnormal muscle biopsy that showed red-ragged fibers. My doctors would not agree to give me a muscle biopsy. He’s sixty-eight now. When he asks doctors what the chances are that it was the antibiotics all along, he typically gets the shoulder shrug and an “Anything’s possible.”

Antibiotic Reactions Are Real

Anytime you explain this to the average person they think you are a crazy hypochondriac. Unless your illness has a name, you will be in for a rude awakening when it comes to people’s reactions, including most physicians. If there was one thing I could say to someone who is taking any medication and feels like there is a problem, I would tell them to trust their gut. It took me years to forgive myself for not going back to the prescribing hospital or at least standing my ground at the one I visited. I should have gone in right away and demanded another drug. Six years later, after the initial Bactrim reaction, I’m still “toughing it out,”

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This article was published originally on September 9, 2020.

Repeated Use Doesn’t Make Fluoroquinolones Safe

by Lisa Bloomquist

Published on March 22, 2018

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“I’ve prescribed fluoroquinolone antibiotics to hundreds of patients and I’ve never seen problems like yours. It’s a good drug with an excellent safety record.”

Some version of that statement is said to many patients who approach doctors with the many symptoms of fluoroquinolone toxicity syndrome. Fluoroquinolones (Cipro/ciprofloxacin, Levaquin/levofloxacin, Avelox/moxifloxacin and Floxin/ofloxacin) have been shown to damage connective tissue (tendons, ligaments, cartilage, fascia, etc.) throughout the body, damage the nervous systems (central, peripheral and autonomic), and lead to multi-symptom, often chronic, illness. Most of the symptoms of fluoroquinolone toxicity are listed on the 43 page warning label for cipro/ciprofloxacin. However, disregard of patients with fluoroquinolone toxicity syndrome is, unfortunately, common. Statements like the one above are wrong-headed and foolish – here’s why:

The statement of, “I’ve prescribed fluoroquinolone antibiotics to hundreds of patients and I’ve never seen problems like yours” and implying that therefore fluoroquinolones are safe, is an illogical argument based in ego, not fact. Prescribing a drug hundreds of times does not make it a good, or safe, drug. The fact that something has been done millions times before does not mean that it’s the right way to do things. As an example, millions of people were given Vioxx before it was taken off the market because it causes heart attacks and strokes. If a physician never saw a heart attack result from Vioxx use, that doesn’t mean that they didn’t happen. They did. Thousands of people had heart attacks and died because of Vioxx. A history of doing something wrong does not make it right. Implied in the statement that a physician has never seen fluoroquinolone damage is the assumption that what a physician sees is factual and without bias. If a doctor regularly prescribes a drug, he or she is going to believe in its safety and efficacy based on a desire to see him or herself as one who helps patients, regardless of its actual safety and efficacy. Doctors have bias and ego just like the rest of us. Anecdotal evidence, even anecdotal evidence from a doctor, is not able to trump experimental evidence. Drugs need to hold up in scientific experiments and controlled trials – not in the opinion court of doctors. In multiple experiments, fluoroquinolones have been shown to damage cells (by depleting mitochondrial DNA, magnesium, lipids, enzymes, etc.). Science wins every time, and the scientific evidence comes down on the side of fluoroquinolones being dangerous drugs.
It shows an unwillingness/inability to connect pharmaceutical drugs to multi-symptom diseases. Fluoroquinolones deplete mitochondrial DNA and lead to mitochondrial dysfunction. When mitochondria aren’t functioning properly, cells aren’t functioning properly. Mitochondria are the energy centers of eukaryotic cells – the engines. If cellular engines are malfunctioning, many systems shut down. This shut-down can lead to a cascade of damage – much of it self-perpetuating and difficult to repair. The details of the biochemistry behind this are incredibly complex and difficult, but the basic concept of drugs that cause mitochondrial damage lead to multi-symptom, chronic illness, isn’t so difficult that someone who went through med school shouldn’t be able to grasp it. But many doctors are loathe to admit that the drugs that they prescribe cause mitochondrial damage. Many studies have shown that fluoroquinolones damage mitochondria (HERE and HERE). Even the FDA acknowledges that the mechanism through which fluoroquinolones do damage is through mitochondrial toxicity. Mitochondrial toxicity = multi-symptom, often chronic, illness. It’s not that hard. But if doctors admitted that fluoroquinolones cause multi-symptom, chronic illness, they may have to look at the relationship between all mitochondria damaging drugs (statins, SSRIs and even acetaminophen are on the list along with fluoroquinolones) and the rise in mysterious multi-symptom illnesses. If they did that, they may have to admit that the drugs they prescribed, ‘hundreds of times’ are hurting people – and who wants to do that? It’s much easier to repeat the lie of, “these drugs have an excellent record of safety and efficacy,” than it is to admit to inflicting harm (even inadvertently) on patients.
They’re not looking at delayed reactions or tolerance thresholds. Despite the fact that both delayed adverse reactions and tolerance thresholds for fluoroquinolones are documented (it all goes back to how mitochondria respond to damage – more HERE), reactions that occur after administration of the drug have stopped are not connected to the drug by many physicians. “It should be out of your system by now,” is repeated often. That may be the case, but the drug set off an intracellular bomb and now the damage is self-perpetuating. Delayed reactions and tolerance thresholds may make recognition of adverse drug reactions difficult, but it doesn’t make them go away. Unfortunately, cells don’t always act as they “should” – they act as they do – with messy things like non-linear reactions, negative feedback loops, etc.
The specialist model keeps many doctors from seeing the damage that fluoroquinolones cause. For example, ER doctors often prescribe fluoroquinolones because they’re powerful broad-spectrum antibiotics. But when people have an adverse reaction a week later that looks and feels a lot like an autoimmune disease, they’re not going to the ER for treatment because autoimmune-disease-like symptoms are for a rheumatologist or general practitioner to treat, not an ER doctor. This disconnect keeps many doctors from seeing the harm done by fluoroquinolones.
Statements like, “I’ve prescribed fluoroquinolone antibiotics to hundreds of patients and I’ve never seen problems like yours. It’s a good drug with an excellent safety record.” communicate to patients that a physician’s anecdotal evidence is more important than a patient’s pain. It communicates that it’s okay for side-effects of a drug to be devastating as long as the doctor perceives the adverse reactions as rare. It’s not okay for a doctor to disobey his or her Hippocratic Oath and hurt patients – even inadvertently. And I would argue that adverse reactions to fluoroquinolones are far less rare than anyone would like to believe (arguments HERE and HERE).
It shows that doctors don’t believe the warning labels on drugs. The warning label for Cipro/ ciprofloxacin is 43 PAGES long and lists many musculoskeletal and nervous system adverse effects of cipro and other fluoroquinolones. Do doctors think that the FDA is just kidding when they put all those adverse effects on the warning label?
The mantra of, “fluoroquinolones have an excellent safety record” has been repeated so many times that it is assumed to be true. It is not true. There are hundreds of studies showing that fluoroquinolones profoundly damage cells and there are zero studies that show that people are immune to the damage caused by fluoroquinolones. The perception of safety is based on an unwillingness to recognize tolerance thresholds for fluoroquinolones, delayed adverse reactions to fluoroquinolones and the connection between fluoroquinolones and multi-symptom diseases.
It shows that they’re afraid. Some of the fear is legitimate. Antibiotic resistance is on the rise. If fluoroquinolones are restricted to only being used appropriately – i.e. in life-or-death situations after all other antibiotics have failed – doctors will have fewer tools at their disposal and they may not be able to fight a nasty infection without inflicting cellular damage that results in chronic illness. No one wants to have to choose between an infection and multi-symptom, chronic illness. It would be better to have neither. But if there aren’t any options of antibiotics that don’t cause the cellular damage that leads to oxidative stress and multi-symptom illness… well, that’s a possibility that is too frightening and daunting to think about.
Too many doctors are attached to lazy medicine – throwing strong, broad-spectrum antibiotics at everyone who comes in the door with an infection (or just a high white blood cell count). If the adverse effects of fluoroquinolones were acknowledged, the pros and cons would have to be careful weighed before administering them. A long discussion with patients about tendon ruptures, peripheral neuropathy, increased chance of diabetes, central nervous system damage, etc., would have to be had along with every prescription for Cipro, Levaquin or Avelox in order for an obligation of informed consent to be met. If broad-spectrum fluoroquinolones couldn’t be thrown at every infection, bacterial cultures would need to be done to figure out exactly what antibiotics would work best. That takes time and money and it’s easier to do things as they have been done – even if it involves denying the damage that fluoroquinolones do. Those pesky tests to make sure that the Hippocratic Oath is upheld may get in the way of business.

Adverse drug reactions don’t stop happening just because they’re inconvenient; or because they’re unrecognized or misdiagnosed. They don’t become rare or insignificant just because they are complicated and difficult to recognize.

Fluoroquinolones are dangerous drugs that damage cells on multiple levels. This has been shown in laboratories many times. The cellular damage caused by fluoroquinolones (along with the destruction of the microbiome) leads to multi-symptom, often chronic, illness. This has been shown by multiple patient reports.

Many doctors haven’t read the memo about how dangerous fluoroquinolones are though. Shouldn’t they know the dangers of the drugs that they prescribe? Shouldn’t they have learned about adverse drug reactions in school? It doesn’t seem like too much to ask for. There are hundreds of studies showing that fluoroquinolones damage eukaryotic cells. Shouldn’t they have read them, or at least been told about them by the FDA?

You’d think so. But the mantra of, “Fluoroquinolones have an excellent record of safety and efficacy” has been repeated so many times that it’s thought to be true just because it’s been heard over and over again. Let’s change the mantra. How about, “fluoroquinolones are dangerous drugs that should only be used in life-or-death situations?” That mantra sounds much better. It’s more appropriate, and it’s closer to the truth. If we keep on repeating it, maybe doctors will start to listen.

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This post was first published on October 1, 2014.

Information about Fluoroquinolone Toxicity

Information about the author, and adverse reactions to fluoroquinolone antibiotics (Cipro/ciprofloxacin, Levaquin/levofloxacin, Avelox/moxifloxacin and Floxin/ofloxacin) can be found on Lisa Bloomquist’s site, www.floxiehope.com.

Photo by karatara: https://www.pexels.com/photo/male-statue-decor-931317/