Hi, my name is Dana. I am 29 years old and in December of 2017, I suffered an adverse reaction to the antibiotic Macrobid. I walked into a minute clinic to treat a urinary tract infection (UTI) the night before Christmas Eve and the doctor gave me 100mg of Macrobid twice daily for 7 days. I have suffered from UTI’s quite a few times in my life and have ended up with a severe kidney infection and so I felt taking an antibiotic was my only option. I have taken Cipro 3 or 4 times in my life and never experienced an adverse reaction that I was aware of. However, I did take Levaquin around age 12 and remember having a horrifying reaction to it. I believe now that I may have been floxed at that time but was unaware of it then. All I could tell my parents was that I felt ‘weird’ and didn’t know what was happening to me. I laid on the couch in the basement for weeks remembering having vivid nightmares and an overwhelming sense of fear, heaviness in my arms and legs, and vision problems. I did recover from that, but Levaquin has been on my charts since age 12 as a drug I experienced horrible side effects from.
The Progressive Adverse Reactions to Macrobid
Within two days of starting Macrobid, I noticed some unpleasant side effects such as severe night sweats, constipation, spotty vision, dry mouth. None of it was affecting my everyday life, so I carried on as normal. Two weeks after stopping Macrobid, I began to feel extreme bouts of vertigo and noticed severely spotty vision and bad digestive issues. This was just the beginning of the nightmare that has unfolded in the past over 4 months.
I was driving my car for work in Chicago and started to feel extreme digestive distress. It was so bad that I had to pull over and wait for it to pass. A few days later, I was driving and the same thing happened. My mom rushed to the city to pick me up so we could go to urgent care. I had a complete blood panel done and everything came back normal. In fact, the doctor told me I had “beautiful blood.” When I questioned whether or not the recent antibiotic I took could have anything to do with it, he assured me that Macrobid does not affect the GI tract and sent me on my way with a prescription for antacids, some liquid to take with meals to coat the lining of my stomach. I never filled either prescription.
Weeks passed and my symptoms grew worse and worse. I began to experience severe bone and joint pain. I was running on the treadmill at the gym and after only two minutes I had to stop because the pain in my legs was so intense I couldn’t take it. I went from someone who worked out 4-5 times a week to not even being able to lift a 2 pound weight. I lost all strength in my arms and legs. I couldn’t even hold my arms up to wash my hair in the shower. I developed a severe sensitivity to sunlight, burning in my arms and legs, loss of feeling and tingling in my arms and legs, severe joint pain, severe digestive issues, anxiety to the point of feeling psychotic, shortness of breath, chills, extreme vision issues – seeing black spots, ringing in ears, 20 pound weight loss, overwhelming fear, crying spells, depression, abrupt wake ups in the middle of the night, confusion, hallucinations, loss of time and dates, and the list goes on.
Connecting the Dots: Macrobid Reactions Look Like Fluoroquinolone Reactions
At this point, I knew this drug was responsible for causing all of these symptoms, and I began to research. I came across the Facebook page Floxie Hope. A lot of these people’s stories sounded exactly like what I have been experiencing. Even though Macrobid is not in the fluoroquinolone class of antibiotics, it is fully able to cause the same horrific symptoms because I am living it. While reading their stories of recovery can be terrifying, I also find a lot of them hopeful. I hope to one day recover like a lot of the Floxies have. I hope and pray for these people every day, no one deserves to have this happen to them. Some people completely lose their ability to walk for months, and some people never fully recover. But, these stories are inspiring and recovery is possible.
In these past four months I have had to quit my job, lost my ability to drive, and for about two months, I lost my ability to function at all. I am slowly regaining function again, but the struggle is not over. I still cannot drive or work, but am noticing daily small improvements. A month ago I could not go for a five minute walk, but today I can go for 15 minutes.
My younger sister was married this past weekend. Even though I was able to be at her wedding, I wasn’t able to dance like I would have loved to or partake in most of the activities surrounding the day. I had to sit down a lot because even the smallest amount of physical activity tires me. I wasn’t able to go to her bachelorette weekend getaway, or even help her with simple tasks getting ready for the most important day of her life.
This nightmare is far from over, but with each day I hold onto the hope that I will one day return to my normal self. I love to exercise and I hope to one day be able to run again. I hope to one day be able to eat the foods I love again. I am a musician and I love to perform. Losing the energy to sing has maybe been the hardest part of this all. I hope to one day be able to perform a song again.
Another hard part has been trying to explain this to people that do not understand. A lot of people are unaware as to how often these adverse reactions to antibiotics and other meds have been happening. I can’t tell you how many people I’ve had undermining me or doubting my condition. I have had a handful of people telling me to get other opinions. People don’t want to believe this happens and won’t believe it unless it happens to them. I am making this my life goal to spread awareness to others of these dangerous drugs.
Recovery and Learning
I began working with a functional medicine doctor a month and a half ago, and I do believe it is helping speed up the process of recovery. Macrobid destroyed my gut, and I am on a strict diet and supplement protocol to try and repair my gut health. I had several labs done and stool test analysis of my gut flora. The test results showed I have severely elevated cortisol/DHEA levels, putting my body into an acute stress response. My hormones were also completely out of balance, with elevated levels of testosterone and progesterone. I am currently taking natural supplements to balance back out and take the stress off my adrenals working overtime. I also have gut dysbiosis, which is when the bad bacteria overrides the good bacteria and causes a plethora of health issues (chronic pain, fibromyalgia, arthritis, anxiety, depression, etc.). A lot of people end up with the deadly C-diff parasite after antibiotic use because it completely kills all of your guts healthy bacteria. So what do doctor’s offices and hospitals do? Give people MORE antibiotics!
Working with a doctor in functional medicine has, however, opened up a whole new door to cracking the code to my own previous issues prior to taking Macrobid. So maybe through all of this suffering, there is light on the other side. While I have been suffering immensely for over four months now, I have also been doing a ton of research on gut function and overall health.
For most of my 29 years, I have suffered from anxiety and digestive issues. I began taking prescription drugs at age 14 after suffering a panic attack in an 8th grade class, and that marked the beginning of living a life with anxiety.
From ages 15-25 I was seeing countless therapists and psychologists to try and correct my anxiety issues. I also was on a plethora of prescription drugs (Xanax, Busbar, Lexapro, Zoloft) but nothing seemed to help and I was a zombie. I also have suffered from acid reflux for most of my life, to where I would pop Zantac to relieve issues. My whole life I have been told that my anxiety was caused by an imbalance of serotonin and that it was ‘all in my head.’
Making the decision to see a functional doctor after my body started falling apart from Macrobid these past months has been one of the best decisions I’ve ever made. Within 15 minutes of meeting this doctor, he asked me if I was born via C-section. I was confused, but replied “yes” and that my mom had quite the traumatic delivery with me. I got home and what I started researching was mind-blowing to me. When we are born, our initial inoculation of healthy gut flora comes from our mothers birth canal. When babies are stripped of that and born via C-section, we aren’t properly inoculated with the healthy gut flora we need for a healthy functioning body, and the bad gut bacteria overrides the good. Not only has my life long struggle of panic attacks been real, but the shakiness, palm sweating, heart palpitations I have experienced are a result of having reactive hypoglycemic episodes due to low blood sugar caused by a poor functioning gut.
I have also learned that through being born by traumatic delivery, I have a poor functioning vagus nerve. The vagus nerve is the main nerve stemming from the brain that is responsible for many things, main one being control of your parasympathetic nervous system or ‘rest and digest system.’ People that have a poor functioning vagus nerve may deal with symptoms such as anxiety and poor digestion. There are a lot of new articles coming out about how to strengthen your vagus nerve and doing some of these exercises has helped a lot of the Floxies. My doctor has me stimulating my gag reflex before meals, gargling water several times a day, and humming or singing if I’m able to.
This information may not be as shocking to some people as it was to me. But the most shocking part of it all is that no doctor or psychologist EVER told me this information. Not because they are negligent, but because most of them do not even know. Who would consider that my poor gut function since birth and being born via C-section could be the cause of my lifelong struggle with panic attacks and anxiety? Look to your gut and you may find the root of all disease.
I urge people that struggle from digestive disorder, autoimmune disease, hormone imbalance, endometriosis, arthritis, osteoporosis, etc., to visit a doctor in functional medicine and get a complete panel done of your gut microbiome. As we age, our gut flora becomes compromised. Things like stress, standard American diet, and antibiotic use completely alters our gut flora causing premature aging and a whole list of health problems. For some of us, we’ve been compromised since birth. Life doesn’t have to be that way. We don’t have to live a life of pain and prescription drugs.
Had I had known this information sooner, my life would’ve been a lot different. I am now receiving natural treatment to restore my gut health, and hopefully, be able to live a normal life at some point. I also do daily exercises to stimulate my vagus nerve to improve digestion. I may have fallen apart from Macrobid, but I am seeing the light and hope in this nightmare I’ve been living the last 4 months. I only hope that full recovery is possible and that I will one day feel like myself again, maybe even better than I ever have before. I hope and pray for all these sick people and people who have been negatively affected by an antibiotic. All of your stories are inspiring and give me hope that recovery from this is possible.
We Need Your Help
More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.
Yes, I would like to support Hormones Matter.
Share Your Story
If you have experienced a medication adverse reaction, please share your story. Contact us here.
Image by 5187396 from Pixabay.
This article was originally published on May 15, 2018.
Hi Dana,
Thank you for your story. It really helped me feel like I was not alone. Ive been going on and off of antibiotics since 14 as well… Im a nurse in the ER and i am passionate about discharging my patients properly and not left in the dark like i was at 14 with UTIs… The nurses just gave me antibiotics and said I have a UTI and need to finish them. They didnt explain to me what it was, any protocols or what to do to prevent…over the years I learned on my own…and even when I followed protocols, I still would get UTIs every 4 years them down to 3 years and down to every 6 months and now every 3 months… My body has become resistant to almost all antibiotics at 31 years old, and I’m so scared. I finished nitrofurantoin after 1 week of taking it… It left me with chills, headaches, stiff neck, lethargy, lung issues and a sore throat… I also have bouts of crying or depression… Im glad I’m not alone and I’m growing everyday…even as a nurse about how the gut coincides with UTIs and what not… I will have to be on a strict diet from here on out…i dont want to be 42 years old with a Foley catheter ?
I think that you all should read the many posts on Hormones Matter that indicate energy metabolism as the major cause of disease.
Dana,
I am having a very similar reaction to Macrobid, which I was prescribed around a month and a half ago for a UTI. It’s really frustrating because my body just doesn’t feel right and there is no actual medical reason for any of my symptoms. They are SLOWLY going away but I feel hopeless and frustrated. How long did it take for you to recover fully? Any advice also?
How do you deal with the muscle and joint pains along with the burning pains from the nitrofuration. Been on this for 10 days and after on week I am having serious muscle and joint pains along with the burning pains from the nitrofuration. Any help is appreciated.
My Dr. said that after the macrodantin gets rid of all the Ecoli and we keep taking it, it will circulate in our system and attack muscles and joints since there is no ecoli to attack. On my 7th day of Macrobid, I had debilitating muscles and joint aches ,pain and soreness. And low grade temp. Macrobid is very good good for uti, but there’s a fine line on how long to take it. I will never take it over 6 days again. My rx from a NP was for 10 days .
Hi Dana, how are you now? I was also floxed in 2014 , recovered but suffered a set back after taking one macrobid.
I had a very similar story, minus the gut issues. Four years ago, Macrobid changed my life, leaving me with arthritis that began after just a couple doses. Two weeks bedridden with a serious serum-sickness-like reaction. Two years crawling, using a cane or walker (on good days), or being lifted from place to place due to extreme arthritis stiffness and pain. Two more years slowly gaining more ability to use my arms and legs again. I was 39 when this happened. People think—you don’t look sick, and 39 isn’t old. It’s not a real problem. Our entire family is overwhelmed with problems that I have not been able to keep up with because I have been incapacitated for the last four years. People look at our problems and just think we don’t have it together—because it doesn’t make sense to them that a young person could have an arthritis reaction to a drug and then be unable to function. I have been to numerous doctors and they all dismiss the involvement of Macrobid, but they can’t figure out what is wrong and they can’t even agree with each other. I am scared to ever take another medication again that I’ve not already had. I’ve had doctors say that Macrobid is safe and arthritis isn’t a reported side effect. Well, guess what? If no physicians report it, there won’t be any statistics about it!
How long did it take for you to fully heal?
I am so thankful that I found your article! Up until three weeks ago I was a completely functional normal person. There was nothing wrong with me. Upon taking these meds for only three of the 7 days prescribed to me, I had to stop. I was weak, constantly exhausted, nauseous all the time, and generally very unwell. After i stopped taking it the tension headaches started, back and neck pain I have never experienced before has cursed me. And then I had a panic attack, after it had been at least 4 years since I last had one due to birth control hormone fluxes. Its just getting worse. The confusion, the spaciness, the pains, the headaches, and worse yet is the constant anxiety and fear that I feel like im dying all the time. I was fine just a few weeks ago and I am getting so sick of this. I really hope this clears up soon because its make me house and bed-ridden. I dont want to be like this. Im glad I am not alone
How long did it take you to reconver?
What does one take if they can’t take
Macrobid or Cipro or sulfa drugs for a bladder infection? I hate taking anything but sometimes I’m forced too and I react to almost everything.
Email me with info please.
Antibiotics do not need to be taken for acute infections like UTI’s or bladder infections. There are plenty of supplements out there that can eradicate the condition. I’ve heard a lot of good things about D-Mannose and Uristatin. If you suffer from recurring UTI’s as I have, it’ll help to be on a good quality multi-strand probiotic (Bio-Dolph 7 plus is a reputable one) I never knew before this year that gut health plays a major role in urinary/bladder infections. It’s hard because I would rush to take an antibiotic if I got a UTI because I’ve had it spread to my kidneys, in which case an antibiotic may be necessary, but there are much safer alternatives than FQ’s or Macrobid. Especially if you’ve taken any FQ’s in the past, it’s possible to have a reaction to most common antibiotics. Hope this helps!
Dana I’m so sorry to hear of your situation thank you for writing this article.
I have crohns disease and get frequent UTIs as well as have a propensity to anxiety and depression – oh how western medicine is so ignorant of how the gut and mind work together.
For treating a UTI it depends on what pathogen causing the infection.
Dmannose with cranberry is a supplement that I have found useful BUT ONLY for gram negative bacteria.
You find out what bacteria causes the infection by having a urine culture.
You could try it and if it doesnt work go see the dr for a culture and antibiotics.
Just be careful, I took D mannose and it took away the infection
2 months later I had another infection and took it again but this time all the symptoms went away except the foul smell to the urine ( only first urine of the day – bc it’s most concentrated) . I’m a nurse and at that time I wasnt aware that D mannose was only effective for gram negtive baccteria and I had foul urine on and off for about a month and I ended up having to take macrobid. If all the symptoms do not go away do not ignore them because as Dana mentioned the infection can go to your kidneys and cause kidney damage if you don’t treat it.
Hugs all
Hi Dana,
I read this article and find that I am going through a very similar experience. I had also previously been floxed by Cipro 7 years prior and had since fully recovered. Recently I took macrobid for a UTI not realizing it could potentially have the same effects as Cipro and I have been having a re emergence of symptoms, though seemingly on a milder scale.
I am wondering if there has been any progress in your recovery and if there has been anything you have done since this post that has helped you?
Hi Jessica,
I’m so sorry to hear of your struggles. It’s been 6 months since I took Macrobid and while I have seen slight improvement, a lot of my symptoms still persist. Over the years I’ve taken Cipro 3-4 times to treat UTI’s and never had a reaction to it. I’m currently seeking out treatment from a doctor in Beverly Hills that specializes in Fluoroquinolone Toxicity, as he was paralyzed for 6 months from Cipro and recovered after stem cell therapy.
What I’ve learned from him is that my previous exposure to Cipro is what caused the Macrobid reaction. So once your body is exposed to fluoroquinolones, it reaches a certain threshold before the bomb goes off. Even though I never had a ‘reaction’ to Cipro, my body reached a breaking point from Macrobid because of my exposure to fluoroquinolones previously. So maybe this is what’s happening with your recurring symptoms.
I start treatments with him at the end of July so I’m remaining hopeful of full recovery. I also have been receiving treatment from a functional medicine practitioner which I believe is helping also. He’s working on repairing my gut and I had a stool test done which showed a high level of bad gut bacteria in my microbiome. One major one being a high number of Clostridium, which is a gut bacteria known to cause neurotoxic symptoms. This makes sense because of all the psychosis, hallucinations, and visual disturbances I’ve been experiencing. We’re working on correcting that with herbs and a heavy dose of probiotics and S. Boullardi. I’m also on a lot of supplements (magnesium, Omega 3s, mitochondrial support, and anti oxidant support)
I started acupuncture last week and it seems to be helping immensely after only 4 treatments. I already struggled with anxiety and panic disorder my whole life before the devastation the last 6 months so I do believe it’s helping to manage stress and seems to be bringing my body back into balance and helping it heal itself faster.
A lot of Epsom salt baths and light walking and stretching when I have enough energy has been helping also. I try to meditate and do deep breathing and also keep up with my daily stimulation exercises (humming, gargling a full glass of water several times a day, hot/cold showers, activating gag reflex before meals)
Hopefully this helps and I hope and pray for a speedy recovery for you! The devastation of these antibiotics is awful and I hope to one day recover from this nightmare.
Hi
I to have had a severe reaction to macrobid which put me in the hospital. They said I was having a heart attack and treated me for that also. This has been the most horrible ordeal I have ever been through. I really don’t know what all they did to me in the hospital but I do know that now I hurt in every muscle and joint I have severe migraines and am so dizzy it’s sickening. I have been very healthy before this. I was not on any medicine at all. I just went in for a UTI and now this. I have only been out of the hospital a few days and I feel like I don’t know what to do now. I am so weak and sick and do not know who to turn to for help.
This is a horrible drug and needs to be taken off the market. Any advice you can give me I would welcome it. I hope you continue to get better.
Hi Kathy,
I am so sorry to hear of the horrible symptoms you’ve been experiencing from Macrobid. It is such a horrible drug and is equally as dangerous as Fluoroquinolones. My symptoms have continued to worsen over the past year, but now seem to be staying stagnant. It’s been a year since I took Macrobid and over the past 2 months I’ve been in the hospital twice for severe breathing issues. I have severe respiratory muscle weakness from the reaction I’ve had Macrobid. I failed the pulmonary function test and they ran every test imaginable and can find nothing wrong with me. EKG’s, MRI’s, EMG, Echocardiogram, every autoimmune panel imaginable. They thought I had Myasthenia Gravis or Lyme but everything came back negative. They had no explanation as to why a previously healthy and active 30 year old has severe respiratory muscle weakness and can barely walk.
Needless to say, western medicine is not going to help the devastation caused by these antibiotics. I read some amazing things about ozone therapy (autohemotherapy) and started treatment a few months ago. I am noticing slight improvement and I think this may really help you. I’m only on my 4th session and I’m going to need about 20 to start. It helps boost mitochondria and activate your bodies inner healing capabilities. It also helps your body to detox the drug if it’s stored on a cellular level and in your tissues. Alternative healing places are the route to go when dealing with antibiotic toxicity. Also you may want to get blood work done at a walk in clinic just to test for any vitamin/mineral deficiencies so you can supplement.
I really hope this helps you and feel free to email me directly if you have any other questions or just need to talk to someone. I know how devastating it can be to watch your life disappear before your eyes just from taking an antibiotic for a UTI. Hold onto hope and know that time will heal. ❤
-Dana
danalynnwold@gmail.com
Dana,
How are you doing now???
I was floxed from levaquin in 2014, recovered completely. Now suffering a severe relapse from macrobid