Bactrim reaction

From Healthy to Barely Functioning After Taking Bactrim and Keflex

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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 prior to 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 2am 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 really 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 actually 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 literally 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 in order 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 those 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 ER’s 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 own research on a regular basis. 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 there 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 a 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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3 Comments

  1. Hi Christina. Sorry to hear about your terrible experience. Its so frustrating to hear doctors tell people to stay on drugs when they have no idea how bad we’re feeling at the time. I can’t believe they prescribe some of these medications although these reactions seem to be somewhat rare.
    Just like Stevens Johnson Syndrome affects skin, I presume these antibiotics can cause damage to any other organ, or your nerves, etc.
    Some say an autoimmune response (molecular mimicry) can be triggered, and others say it’s mitochondrial or DNA damage.
    I hope you get some answers tomorrow on your teleconference.
    I know it’s very difficult to do, but I feel like it helps to take one day at a time. It’s easy to get overwhelmed by thinking too far ahead, or thinking of too much at once.
    I hope you stabilize, and a healing process begins for you.
    LDN has helped my pain and fatigue to a degree but it all takes time.
    God Bless, and please keep me posted on your recovery!

  2. Hi Chris;
    I am so sorry for what you are going through and can certainly relate. Although I have not struggled with this for as long as you have, I have gone through hell for the last 10 months. The reaction I had is from another antibiotic (Macrobid). I have been admitted to ICU 3 times during this time as I could not breathe. The last time, a little over a week ago, they were discussing with my family about putting me on life support but they did not give much hope as my condition was so severe. Luckily, they managed to stabilize me in the nick of time. As unfortunate, this is for us who are going through this, I am happy to be sharing with others who understand this hell. I am enclosing my original post.
    I am so glad I found this article and would love to share my experience with Macrobid. In November of 2019, I felt a UTI coming on. I went to my doctor and was prescribed Nitrofurantoin (Macrobid). Before taking my first dose I felt well. One hour after taking the medication I became extremely short of breath, temperature rising fast, my head felt like it was going to explode and my feet were burning. My daughter was going to call an ambulance but I pleaded with her not to as I felt too sick to move. In the back of my head, I thought that maybe things had to get worse before getting better. I had a rescue inhaler in the house (Ventolin) that helped me breathe during that time. I discontinued the drug on day 4 and on that evening I went to emergency. Before seeing the doctor, I was being lectured by at least 3 different people about how unwise it was to stop taking the medication. I said to my daughter that I would have a fit if the doctor would start to lecture me as well. However, when the doctor came in to the room, the first thing he said was that he knew exactly what was wrong. He said that I had a very rare reaction to Macrobid, he said he had not seen a case like this in years. This was 10 months ago and I have not been the same since then. I was off work for 3 months. My feet are still burning, to the point that I can’t sleep at night and I have to use rescue inhalers regularly to help me breathe. For some reason, I lost the sense of taste and smell and lost over 20 lbs. in a short time. Doctors told me that the med is out of my system so my symptoms are not caused by that. My family and I have done a lot of research and realize that my symptoms are consistent with the lasting effect from Macrobid. The last 3 weeks has been hell. I ended up in ICU 3 times. The last time, they were discussing putting me on lifesupport as I could not get any air. My blood pressure went through the roof causing a leak in one of my heart valves, leaking in to my lungs so I was literally drowning. Luckily they managed to stabilize me. I just got home from the hospital 3 days ago. I have gone through a lot of tests, including signs of Macrobid effects. They did find several things on my heart and lungs, including some unexplained scarring. I do believe that if you have an underlying condition, the reaction to Macrobid could trigger many conditions. It is so strange, my blood works has been perfect during the 10 months since my acute reaction to the drug. My breathing, my burning feet and severe fatigue is what has plagued me the most. I am still very weak after this horrible experience. As I am typing this, I just had a call from the lung specialist’s secretary who set up a teleconference for tomorrow. I guess they have all the test results in. Needless to say, I am very scared. If my experience can help someone else who is travelling this journey I will be happy. Hopefully, this is readable. I am still suffering from brain fog.

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