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.
Yes!!!! I don’t want to step foot in s hospital or allopaths’ Office. I have been demeaned , called hysterical, told there is nothing wrong with me. I have been talked down to, bashed for daring to get any non AMA based info. I have endured test after test after useless test. And I have gotten so much radiation in addition to the cipro for tests that show nothing. A friend asked for a ride to the hospital fir a procedure. I said I would do it as long as she didn’t expect me to step foot inside. I am just so disgusted with non integrative allopaths and big pharma and the AMA and the fda and all their online shills like the bogus quack watch that disseminates lies. I wish every md could read thus and truly understand. But I am afraid that until it happens to them personally it will fell on deaf ears
i did write the other week but it has not been published that the doctors had found in Australia the link with chronic fatigue
it is an inbalance of calcium within the body and they are now able to do more tests
Stephanie, you are so, so not alone. Floxie Hope is the right place to have come. I can tell you that three years after taking one single 750 mg. Levofloxacin pill, I think I am starting to recover. This gives me hope, that time heals. My doctor also abandoned me, and there is no worse feeling. Hang on, know that people are with you and rooting for you. Thank you for writing – it takes courage to speak.
My “unofficial” advice: Tell everyone you meet what Fluoroquinolone poisoning has done to you. Be the ambassador against the evil of this drug so that not one more person suffers the way we have suffered.
Also, after only 4 pills I am finally recovering from being unable to walk, but my knees and ankles still pop, still hurt. I am using a detox tea given to me by a homeopathic doctor. It works. Also, no red meat. None. It works, too. Take Vitamin D3, Magnesium, L-Lysine 500 mg. Have hope. Hunt for a good doctor, even if she/he doesn’t believe Fluoroquinolone did this to you, let them help you. A recent doctor said, “let’s pretend you have rheumatoid arthritis because that’s how it presents…” Okay, let’s pretend…… whatever it takes to get well again… Move forward. Make plans, however small. Feel in control of you again. It is a slow road back, but I do believe with time and the right vitamins, foods, and attitude we can get rid of this terrible Toxicity and harm done to our bodies!
Doctors may never “come around” to the truth…but WE KNOW and that’s really what is important. We do NOT need validation for our pain and suffering. WE KNOW what caused this…now, we can make the choice to do whatever it takes to take back our lives…
Have hope. “This too will pass.” Not in a year, or maybe even two or thee. I know someone who had to wait five years to get better, but you will improve with time…You will. I am. We will….
YES! don’t tolerate more abuse, everyone. be vocal, be adamant, put in complaints about these abusive dangerous drs. on yelp and wherever possible. magnesium seems to be the key. homeopathic treatment initially was horrible for myself and made things worse a few months in. Lots of hot packs, cold packs, movements even if my limbs had to be moved by someone else, the old polio treatment, helped. lots of supplements, “Brain on” was a big help. buying a cushiony electric reclining chair that pushed me out was my biggest savior for comfort, the bed hurt and i couldn’t get out of it, sleep, or out from the blankets. i still keep a heating pad with me all night and in the chair. its 3 years later and i’m left with several things-peripheral neuropathy in one foot that i find the chnese foot massages and nail salon massages help immensely. pain in one forearm, myriad other problems but am mobile, functional, less stamina. keep going, Get a good front man or woman who will speak up since you won’t have the energy. It seemed to disperse i the same order it came on after a year, some 6m month ,but the onslaught until total was actually 2 years. It will pass!
Stephanie, When you say “attacks”, what kind of attacks are you having? i haven’t heard many people talk about attacks, but you can have the panic attack symptoms, along with heat and sweating if your central nervous system is ruined. How long have you been having the attacks? if they are central nervous system attacks, they will come on usually at precise intervals. No doctor is going to figure this out, as no one was warned about the central nervous system damage.
Stephanie, you have just wrote my exact experience with the mainstream medical community since being poisoned 7 months ago (on Cipro). Every point that you made or every paragraph was me. I have worked in the medical field for over 20 years and I believed these doctors had most of the answers – until I got sick and then I realized they don’t know anything. If you have something that is anything out of the ordinary, or a condition that they might actually have to think outside of the box to diagnose – then forget it…you are on your own. I have also been told by my physician that “I don’t know what’s wrong with you, but I don’t believe it is the Cipro like you think” – another doctor told me to “check back in with the rheumatologist (who by the way, had told me what was happening to me was NOT an autoimmune reaction) – yet this doctor that wanted me to go back to the rheumatologist refused to refer me back to him. I told him that my knees were hurting severely, and he then asked me if I could “do a couple squats” – Seriously?? The appointment ended with him asking me if I “wanted to pursue counseling” – He was worthless and the whole appointment was a waste of time and I decided that I was done with doctors – as they obviously couldn’t help me anyway. I continued to do my own research and Floxie Hope has been a huge source of information, and hope.
It’s terrible that this happens but every doctor that has treated me have admitted it’s Cipro but are lost on how to help
Unfortunately there are many bad intergrativd doctors as well as western doctors,believe me I have met a few
The card I have had from the qe hospital Birmingham had been excellent,every test I have asked for has been given without question .They also said to me we don’t want to do you anymore harm and steered me away from steroids and anti inflammatory drugs
I am so sorry floxies have to endure this,quins are pure evil
I was poisoned by CIPRO 4 years ago and went into anaphylactic shock. I have advanced Emphysema and am quite elderly. I can hardly walk anymore due to peripheral neuropathy
caused by Cipro. I could no longer use my breathing medicines for my COPD as I developed Toxic Reactions to medications ( and some foods )and was put on oxygen. To make a
long story short I went to the internet for one year and a half to look into every avenue of information concerning all the new symptoms I was experiencing which are too numerous to
mention here. I was able to deduce after absorbing and processing and comparing what was the cause. Two very astute doctors – neurologists – confirmed my suspicions. Both said that
Cipro is the culprit. My G.P / cardiologist also believed me. My gastroenterologist also listened and believed me. My Therapist also believed me. Most doctors gave me credence and respect. My approach was rational and I came with evidences. I presented myself using medical terminologies doctors could relate to, giving results of tests to them. I presented with
a handbook charting the cytochrome P450 pathway – the metabolization of drugs and adverse reactions. I never presented in somatic helplessness nor confusions. I have been placed innumerable times into the hands of doctors in Emergency rooms who prescribed treatments for me that would have likely killed me or put me into a state of medical psychosis
and liver and kidney failure. To those instances I knew, gut wise, I needed To say “no” and leave the building. I have met doctors who patronized me, told me to take a Tylenol.and that it is “just old age” I’ve seen, heard it all. But I armed myself with knowledge. I changed my food habits. I am taking homeopathic supplements that alleviate to a degree what I am physically and mentally still suffering from. I had to take my power into my own hands. If a tree falls in the forest and there in no one there to hear – does it make a sound ? The answer
I give is this “if a tree (me) falls in a forest ( doctors) and there is no one there to hear (believe) does it make a sound ? Yes, it makes a sound – I HEAR IT. That is the assuredness and certainty one alone needs.
My GP told me the other day that he has several floxed patients. Two are like me– in various stages of healing and will recover, maybe even 100%. He said two are permanently and completely disabled and he has no doubt it was from the Levaquin.
I had to see Dr. Glen Toth in Waukesha last week to get some progesterone cream since my usual hormone doctor, Dr. Whitcomb is in India right now working at an orphanage his father opened there. I usually just go to Dr. Toth’s office for FSM (frequency specific mircrocurrent) but he squeezed me in for an appointment.
He said that years ago he actually prescribed FQ’s but he started to see that the risk benefit was not ok with those drugs for simple infections. If you were going to die then that would be a different story. But for everyone else, he concluded on his own, well before “flox” was a word or online forums existed, that fluoroquinolones were simply not safe for outpatient use.
How did he come to that conclusion? He listens to his patients. Dr. Whitcomb listened to me also, when he treated me post flox. He knew that a drug with boxed warnings from the FDA could cause problems and he took that warning and my complaints seriously. Even the doctor who floxed me believed me and quit prescribing FQ’s. She had not believed anyone she floxed prior to me (and I am sure she did flox some people) but my case was serious enough and came on quick enough that she realized it had to be the Cipro. My current GP is a little better in that he recogzines his floxed patients who have come to him– but by now the word is starting to get out– more than it was four years ago.
All doctors have to do is listen to us and this stops. But I think working under managed care they don’t have time. They are rushed. I worked in healthcare. The productivity standards are so unrealistic I would be back in teaching even if Cipro had not temporarily made me too weak to work in physical therapy. Our current healthcare system is all about making money for somebody and not about treating patients at all. You get into this mode of just trying to meet your productivity standard and keep your job and it makes even the best of us make mistakes. Your employer almost brainwashes you into thinking the standard is reasonable and it is your problem for not being able to work more efficiently.
Dr. Toth said there is also an issue of politics though and I should, for my own safety, always just say Cipro gave me a rash and not mention the neurological issues. With medical professionals I do not know and cannot trust he said if I say it gave me a rash they won’t give it to me. If I say it did anything else they might still slip it to me thinking I am just a hypochondriac. To say it caused a rash is not a lie– it did for awhile among the myriad of other symptoms.
I had been feeling encouraged realizing how all my doctors now and many of my friends’ doctors believe us and even have been coming up with some good treatment strategies. But Dr. Toth was more realistic about the bulk of mainstream medicine– for whatever reason, they just will not listen to us.
In your head …they are fighting….its in your head …in your head..Zombie..Zombie…Zombie….famous song by the Cranberries. And their drugs. Weve all been told its in your head…but it very much real…just the same. Alice in Wonderland and this time its what is called legal. Well this one wasnt fun. There was no feel good and the life after has been Hell on earth. There is payment due on this one. God will be asking the questions. I pray for your forgiveness. I pray for your souls. I pray you will repent and be changed and accept Jesus Who will make a way for you….but just in case you do not…remember i will see you. And you will have an eternity to remember.
Well, here I am again to add to my previous story. So stupid me starts to get short tempered with all the Tendonitis pain and the trials of trying to get disability(my poor husband the receiver of all the hostility) and I go to the Pa and I tell her all about it. She says let me put you on something that is tried and true from the 70s. She says, it will calm you down. I’m already on alprazalam. FYI. So she puts me on Lamictal and says: Now don’t be alarmed if you read it is prescribed for seizures ????. So I start on it and less than a week later I think I’m getting the flu. Upset stomach, fever, dizziness, tiredness, muscle pain mouth sores and swollen lymph nodes under my jaw. So I read the warning and side effects and realize I don’t have the flu! I should have known. Because I didn’t have the symptoms that go with the flu. Like cold, cough, throwing up or diarrhea. So I go to my doctor and he says: I can’t say that this was caused by the drug. But, it could have been. I said I’ve never had swollen lymph nodes without having influenza symptoms. He said it can happen but, it’s not common???????????? So the moral of this story is: DO NOT TAKE ANY MEDICATIONS IF YOU DO NOT HAVE TO BECAUSE YOU BODY IS SO OUT OF WHACK FROM FLOUROQUINOLONES THAT IT CANNOT TOLERATE ANYTHING MORE. Thank you for lisrening????
Great explanation of our struggles and the being dismissed by western medicine. Western medicine caused our problems and they refuse to acknowledge an antibiotic caused this and continue prescribing fluoroquinolones despite the warnings.
Wow! Thank you so very much for sharing. It brings me to a place of clarity knowing that I am not the only one feeling this way or fighting for myself with the medical “professionals.” It has been a very long and agonizing journey this far. I still have huge flare ups which constitute resting for most of the day. Feeling so useless and a burden to my family because I want so desperately to do the things I used to in regards to taking care of them but my body often fights against that. Please know that you will be in our prayers and that hopefully together (all of us floxies), we can make a change. ♡
This post was written on my 48th birthday. I am grateful to be reading it today as a prepare to go in for another round of bloodwork tomorrow. I was perfectly healthy in 2015. I only took six pills(Cipro) and my life changed. Most days I count my blessings, I have made some drastic changes to get better. Most things I had to learn on my own. I have heard it all from doctors. I have developed a condition called Monoclonal Gammopathy of Unknown significance (MGUS). My functional practitioner says it a reaction to the Cipro. The Oncologist that I now see annually says it could develop into Multiple Myeloma and was shocked that I had this condition at my age. I have been told that I have an autoimmune condition. Sudden high inflammation since Cipro, positive Antinuclear Antibodies tests. Once positive, then negative they a few years later positive again. I have learned to use food to heal and supplements to help with energy and massage therapy for pain. I don’t want to have Lupus or Sclerederma like my blood tests point to. I want my old body back. I want to feel energetic without my B12 pill each morning. I want my gut to accept more than just meat and most vegetables. I just want to go out to eat once with my patient, loving and kind husband. I will keep praying for myself and all of you. Thank you for your post. It has given me the courage to get these things out.
My story too. I am in an electric scooter now for longer walks. Have to get a scooter to shop. Recently it has been suggested that I want to be sick.