Before taking those four pills of Ciprofloxacin in 2007 when I had a health issue or injury I’d work through it. I’d exercise and strengthen the muscles to improve the affected area and eventually I would recover. An injury could take days or weeks to heal BUT it would heal and I would be back to my usual routine. Floxing is different in that complete healing doesn’t seem to happen at least for me. (This isn’t to say that you won’t heal as a number of floxies have but rather that it’s not my experience.) For instance I suffered a mild fracture to a vertebra as a child that wasn’t discovered until I was in my 20’s. As a normal (not floxed) this led to some lower back issues during pregnancy so I was a regular at the gym taking Pilates classes for core strength. I believed back then as many normals do that as long as I maintained a certain level of fitness I would be fine. Then I took Cipro.
After my horrible reaction to Cipro my whole world changed. I was now a floxie. It was as though someone had flipped my world upside down. If you’ve seen the series Stranger Things then I was now living in the alternate universe. Everything looked the same (not dark and dreary like the TV show) but life as I knew it had changed. It took me a while to catch on to the changes but eventually I did. As I developed health issues and injuries post floxing I would try to address them as I had in the past often with undesirable results. You see I tried to push through the pain but instead of improving it became worse. I tried to strengthen the injured areas only to make them weaker because what I came to learn is that our mitochondria are affected by fluoroquinolone antibiotics and not in a good way. Mitochondria are the powerhouses of our cells, the energy producers if you will and when they are affected negatively they can’t do their job and everything comes crashing down. I would come to learn that I was damaged at the cellular level and eventually it led to fatigue so severe as to be indescribable to someone not suffering like me. This fatigue was one of dozens of issues but to describe it I would say that it felt like trying to move through a sea of cement and I was in up to my neck and sometimes over my head. I didn’t even need to do anything strenuous to feel that way.
Recovery time after activity of any kind also became a new experience in the upside down world of floxing and it still is to this day 11 years later. Before when I was a normal I would go to the gym, run errands, and do chores and the next day do it again. After Cipro exercise would leave me exhausted for days and sometimes it would be a week or more before I was able to attempt to try again. That heavy mind numbing, muscle aching fatigue just wouldn’t go away after exercise. No longer did a day or two of rest enable me to recover. I continued to slide further and further in strength. My son said to me at one point “I just don’t understand how you can go from being so strong to being so weak so fast”. My reply to him was “I don’t either.” Well after 11 years of this suffering and a lot of research I have a better understanding of it. I’m happy to say that I have improved from my worst with a clean diet rich in fruits and vegetables but am I healed? No I am not.
I know this post is a bit different from my usual posts of encouragement and keeping faith that you can and will get better (which I still strongly believe) but I feel it’s necessary because of posts in the support groups by floxies expressing pain and frustration when their loved ones don’t understand why they aren’t capable of doing more; why they aren’t getting better. A common theme in these posts is when the loved one says to the floxed person – if you’d just get up and do something or exercise you’ll get better. The implication being that we’re not trying. I know these normals are well meaning but they couldn’t be more wrong. Our bodies are screaming at us to stop, and rest. It’s sad but sometimes the people we love the most say hurtful things when what we need is their understanding. In their defense I say that until you experience floxing for yourself you can’t possibly begin to understand what we go through; the chronic unrelenting pain, muscles not working, arms/legs/hands/feet giving out, impaired central/autonomic/peripheral nervous systems, extreme digestive issues, and much more. However I need to say to those that don’t support us or say hurtful things to us; shame on you! Shame on you for acting like we can shrug off our health issues like it's an uncomfortable jacket. Shame on you for thinking that any one of us chooses this way of living! As a friend, family member or loved one of a floxie I ask you to please step back and remember who this floxed person was before they were poisoned. We were productive members of society with jobs, families, friends, hobbies, sports, and volunteering. I was a wife, mother, sister, daughter, aunt and I STILL AM just in a very different capacity. Instead of taking care of others I’m now the one who relies on people to take care of me.
There are no guarantees in this life. I thought I was doing everything right to live a long and healthy life. My one mistake was trust in my doctor to first do no harm. It’s not that he intentionally harmed me but rather the pharmaceutical industry has manipulated medicine for profit at a great cost to the individual. But getting back to Floxies and Normals I will tell you that this isn’t an “illness/injury” that one can just push through and get over. Our bodies have been poisoned because we trusted in the medical system. The floxies that I’ve met are trying desperately to heal from this toxicity where methods used by normals just don’t work. To the normals whose loved ones are floxed I ask you to please treat them with kindness and love. Our lives have changed drastically and that alone is extremely difficult so please be supportive as we try to find our way out of the upside down and make our way back into the world. We need what everyone needs (even normals!) and that is love and compassion as we mourn the loss of our healthy selves and try to make our way and live in our new reality that is floxing.
Thank you for listening to this floxie and God Bless all of you.
Great post Betsy! I am struggling to type this post through heavy brain fog because I have been pretty busy lately and have not had a chance to nap today. I once was a strong active man who worked hard and played harder, but now I am disabled, sitting at home most days and going to various types of doctors pretty often. I have been floxed since 2007 myself, and will never be able to work as a chef again. I can barely keep myself and my sister fed. she is also floxed. There are literally millions of us but most are misdiagnosed with fibro or lupus or ALS or Parkinson's or MS or any of hundreds of other WRONG conditions. Everyone needs to look into this more since fluoroquinolones are some of the most prescribed drugs there are.ReplyDelete
Thank you Mark! I understand what you're going through as I'm living it too. I'm so sorry.Delete
WoW, I could have wrote this! Nearly every single word is me... 2007, me. Only difference? My Dr was a she, and my name is... Rose. Well written Betsy! You told the truth here! Fluoroquinolones are the atom bomb antibiotics meant for life & death use only! Everyone beware & be your OWN best Dr!ReplyDelete
I'm so sorry that you're living this nightmare too. All we can do is tell our stories in an effort to save others.Delete
I couldn't have written this more perfectly! I feel like everything you said were my own thoughts on paper. Being a floxie is a constant struggle. After 5 years of battling the side effects from taking Levofloxacin, I wonder "will the pain ever end?" Nerve damage, tendinitis, neuropathy, GI issues, muscular/skeletal pain, tremors, ear problems, depression... to name a few. I mourn my old self... I was young, having fun and in the prime of my life! (29 years old).... Fluoroquinolones ruined my youth. I aged 40 years overnight from only a couple of pills. I hope one day we can create more awareness of the dangers of Fluoroquinolone Toxicity. Thank you for writing this!!ReplyDelete
Your welcome Kelly! I'm sorry that you're living this hell too. I hope one day we can stop this from happening. The way to make change is to vote with your dollars. Keep the faith!Delete
Bravo. Your story came at the perfect time... I am sitting here wondering why I feel so broken today. Of course I know the answer. There are days when i am just so bewildered, almost surprised at how debilitated I feel. Like its a new reality. I've been living this hell for 3 years. Some days it still comes as a shock.ReplyDelete
I absolutely believe healing is possible, inevitable. I actually felt it two weeks ago. I had it! I lived it! I loved it! And then I did too much and it went away. One day it will come and stay. I truly believe. Best wishes to all of us.
It is mind boggling this new reality in which we live and at times it's overwhelming but hold on to those times when you felt you were healed. Positivity like yours does help! I wish you all the best and hope that the day it comes and stays is soon.Delete
Betsy - my daughter and I just stumbled upon 'floxie toxity' through a posting by Dr. Ben Lynch 2 weeks ago...and the lightbulb lit above our heads. It's been our quest (as is breathing) to find out what caused her deterioration in health during her college years 2009-2013) which seemed to be like a favorite sweater that just started unraveling....slowing...until having no recognizable form to what it was before. She has been through at least 15 different doctors trying to find out what it is/why it happened and HOW DO WE HEAL! Thank you for your writing and the truth in it.ReplyDelete
Barbara - I'm so sorry for what your daughter is going through. It is awful. She is lucky to have such a supportive and caring mom. There are numerous wonderful support groups on FaceBook that can be helpful for those of us enduring this nightmare. The people in those groups helped me through my worst times. Healing from this is a challenge but it can happen. One of the most important things to do is to eat as organic (avoid processed foods) as possible. I've done numerous diets and I've had the best results with a predominantly vegan diet. Avoid chemicals of all kinds including toiletries, cleaners and pesticides. There are numerous alternatives. Work on eating anti viral foods and add alcohol free plant tinctures that are anti viral. I recommend reading Medical Medium by Anthony William for insight into mysterious health issues and healing and I run a group called Floxies for the Medical Medium if you'd like nutritional help. Please reach out to other floxies as the emotional support can be healing. God Bless both of you.Delete
I have also been floxed 11 years ago, it has been an exhausting journey, are there any other antibiotics safe that we can take as when I took amoxicillin after being floxed made my body ache for days.ReplyDelete
I apologize for being slow getting back to you but I do want to let you know that I have had very good success treating infections with natural remedies and herbals such as olive leaf extract, thyme, raw garlic, Manuka honey, oregano oil capsules (I like Gaia brand), etc. For colds and viruses I use elderberry, L lysine, lemon balm(alcohol free tincture), etc. I have found lots of good info googling "natural remedies for... ". I hope this helps! I avoid antibiotics as much as possible as I have had bad reactions to as little as one pill.Delete
Fibromyalgia patients frequently have signs of cognitive impairment that sometimes can be demonstrated through clinical testing fatigue and nauseaReplyDelete
I'm familiar with fibromyalgia. It's a typical diagnosis for a group of symptoms that Drs admit they don't know the cause. Many floxies get a diagnosis of fibromyalgia after taking Flouroquinolone antibiotics which have most of those same symptoms listed as side affects of the antibiotic. While I personally haven't received this diagnosis I know many floxies that have. In my opinion fibromyalgia is a medication induced illness.Delete
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