Note from Lisa – This is an unusual story for Floxie Hope. Most of the stories on this site are recovery stories. The people who shared them have been through fluoroquinolone toxicity, and now consider themselves to be recovered. Many people have had ups and downs, but at the time that they write their story they are feeling significantly better than they were during the acute phase of fluoroquinolone toxicity. They are recovered, or well on their way to recovery. Dan’s story is different. It’s not a recovery story in the same sense that the other stories on this site are – Dan still struggles significantly with the pain that fluoroquinolones brought to his life. But it is a story of perseverance, strength, survival, and progress. It is a recovery story in that he has come far. He still has far to go, but his story is so full of wisdom and insight and empathy, that I thought it would be helpful as a story of hope. A full recovery isn’t required for hope. I hope that you gain as much as I did in reading Dan’s poignantly told story.
Dan’s Note – Being in chronic pain begins as a war that requires determination and skill. It is a war with pain, with fatigue, with doctors and insurance companies, with all who do not believe such a well-looking person can possibly be in as much pain as they say. It is also a war with the self. There is an assumption of choice—that with enough effort this pain can be made to go away. But at some point the body is weary and a decision must be made. Continue the fight or surrender. It takes a very long time to make peace with the truth that the pain is not going to go away. Not any time soon. Not with the treatment available now. It takes a very, very long time to accept the irony that winning the war requires embracing the enemy. With the embrace comes a real choice: the choice to fight not against the pain, but for the self. The choice to build a life with meaning, even if that life contains pain. Once this peace is made the war ends and reconstruction can begin.
My journey began in May 1996 when I was dealing with a stubborn sinus infection. I was labelled as a chronic sinusitis sufferer. Five years of many other antibiotics including Ceftin which was considered to be the strongest on the market at the time. The Otolaryngologist who I was working with prescribed Ceftin and to drink 160 ounces of water daily for 10 days. Soon thereafter, he retired and a new, young Otolaryngologist took his place who declared that I indeed had a sinus infection in addition to a very deviated septum. I scheduled a nasal septoplasty surgery on April 30, 1996 and was prescribed 60,000mg of Cipro in 20 days. That order was four times the normal protocol, (3000 mg daily for 20 days.) My surgery also included a cauterization of the opening of my left maxillary sinus to hopefully provide better drainage of the sinus cavity.
My recovery was encouraging because I could breathe equally on both sides of my nostrum, until the 11th day after surgery while still swallowing 3000mg of Cipro daily. On the 10th of May I felt as though I was stricken by lightning and began a torturous ordeal of headache and nausea. Upon reporting this to the ENT, he ordered me to be evaluated by a neurologist who reported nothing unusual. The usual followed, seeing my family physician who did not believe me when I explained the the horror began while taking Cipro and I knew it was a part of the equation. Returning to the original otolaryngologist was a bust too because in his words, “you have a bad bug”.
I made an appointment to be evaluated by another ENT 110 miles away in Grand Junction, CO. He declared that the infection had enclosed itself in a polyp and the solution was a Caldwell Luc procedure, cutting through the skull above my teeth to access the inside of the sinus cavity to physically remove the polyp. That procedure led to the first biopsy of the infection which declared that I had Staph. The procedure was intense, it severed several nerves including my Superior Alveolar nerve and killed two of my teeth. Again, Cipro was prescribed for another regimen.
One month elapsed and I knew I was not out of the woods, I continued to have severe headache and nausea and was also working full-time as a plumbing contractor. I went through an allergy evaluation to allow for any discovery that could have made a difference but that was uneventful. Continuing to struggle with sinus misery plus my headache and nausea, I sought another otolaryngologist at the University of Colorado Medical Center who was the senior ENT on their team. He declared that the previous surgery did not completely remove the staph infection so I received another Caldwell-Luc procedure to hopefully remove the remaining staph. That was in late 1997, and having been prescribed many anti-depressants of which Elavil (Amytryptilene) offered minor relief and allowed me to get fractured sleep.
Soon thereafter, I enrolled in the Page Bailey Institute for 80 hours of curriculum which was established to render support for chronic pain sufferers. The program was helpful by learning coping skills and trying to train the brain to refer to positivity, which I still utilize today.
For five years I toughed it out on Neurontin, Elavil, Ativan, and Indocin and a ten treatment regimen of Iontopherysis Prednisone concentrated on the left side of my face, behind my eye which I had now named “Homeplate”.
The next pain specialist recommended a Spheno Pallatine block which was uneventful and was the first of the nine nerve blocks that I was given. V2 Trigeminal, Infraorbital, Supraorbital, Supratrocchlear, Superior Alveolar, Left Occipital, and three others which were all uneventful. By now it was 2006 and met with the Director of Neurology at St. Judes Hospital in Denver who declared I was a chronic migrainer and prescribed Topomax. After 6 weeks of reaching therapeutic level and managing heinous side effects I discontinued Topomax. Another visit with the St. Jude specialist revealed that I was a candidate for the Michigan Headpain and Neurological Center in Chelsea, MI.
After weeks of waiting, I was accepted and attended that facility under the direction of Dr. Joel Saper who was alleged to be the absolute most knowledgeable headpain specialist in the US. Upon admittance, they confiscated my Elavil and began a daily regimen of machine gunning me with abortive and preventative drugs daily. I had attended a seminar before admittance assuring me that I would be systematically evaluated and diagnosed. Each day, Dr. Saper would visit me with his staff to ask questions about my status and assess his strategy for ongoing treatment. On the fifth day, I had a mental breakdown in the presence of him and his eight staff members, declaring that I was being given powerful drugs randomly without consideration of side effects and contraindications and that I feared for my life. His response after my pronouncement was, “you people from Colorado are just wired differently”. I realized I was trapped there and it took eight more days of meeting with two psychologists to convince them that I was doing better and wished to be dismissed before they allowed me to leave. They neglected to give me back the Elavil which they confiscated from me upon admittance which was a hypnotic antidepressant and the only drug I had benefitted from for over a year. After persistent calls and requests, they returned my remaining Elavil, which I began taking only to find that it no longer had any efficacy and was difficult to endure, so ceased taking it.
In 2007 after eight brain MRI’s with nothing remarkable I sought another Neurologist in Vail who referred me to the Mayo Clinic. By then, I had lost my ability to work and closed my business and applied for disability, which after 3 months I was granted. I attended the Mayo Clinic for 18 days, being placed on a routine series of tests and exams which eventually led me to the brain surgery department where I was told that an experimental procedure that involved a brain implantation which had been performed 12 times with only 2 successes and would not be covered by insurance was an option for $130,000.00. By then, I had had enough of the Mayo Clinic. A doctor’s assistant took me aside and informed me of a clinic in Denver which embedded wires under the surface of the face and connected them to a small electronic device designed to modulate pain. Upon an evaluation at that institute I was informed that frequently the wires would break beneath the skin so I again realized I was chasing my tail.
Soon thereafter I was treated by a Neurological Chiropractor for a week in Houston, TX which was another bust. Then I attended Tufts University Hospital in Boston for evaluation for 5 days which led nowhere. In 2008, I underwent 48 Neurofeedback treatments that led to severe fatigue and offered no relief. By then, in July the FDA had blackboxed Cipro based upon a California study of 4500 athletes who had become crippled after being floxed. The neurofeedcack practitioner received a grant to
attend the US Naval Academy Medical School to lecture before the faculty about the perils of fluoroquinolones. She offered to pay all the expenses for me to attend that forum as a “poster child” and tell my story but I was severely grounded and bedridden and declined the offer. Shortly thereafter, the US Government cancelled its $3 billion dollar per year with Bayer mostly because an average of 34 soldiers per month who served in the Desert Storm ordeal beginning in 1991 who had all been floxed before deployment because of the fear of biological warfare in Kuwait over the course of the next 16 years had committed suicide, while losing 28 soldiers per month on average during the war in Iraq.
Then another modality known as Frequency Specific Microcurrent presented itself which after 10 months left me nowhere.
In March 2010, after 38 years of marriage, having a beautiful son who was then 24 years old, owning my own home and could no longer see light at the end of the tunnel, I attempted to take my own life by mixing dozens of pharmaceuticals in a cocktail and swallowing the contents. By now, my wife and I were sleeping in separate rooms to allow me precious, rare sleep. After saying goodnight to her, I swallowed the mixture.
My body reacted by having a seizure and I fell out of bed and hit my head on the nightstand which my wife heard. I was awakened in an ambulance as the EMT’s were forcing me to swallow carbon while being taken to the hospital. Two days later, I was assigned a psychiatrist and dismissed from the hospital.
Always insisting to every doctor I met that Cipro had done this to me, I met my eleventh Neurologist. He referred me to a colleague of his in Fort Lauderdale Florida who was well known for embedding wires under the facial skin and conducting tests with an electronic device as a study which would allow him to remove the wires after a battery of programs to override headpain. If the protocol had been successful, the wires would have been connected to a permanently embedded device in my neck. After 12 days, the wires were removed and I again returned home battered. By now, Benzodiazapines had become my only means of getting sleep. Before using Benzos I was asked by my next neurologist to see how long it would take me to fall asleep using no drugs whatsoever. After 84 hours of being in a totally dark room, I had not slept fora single minute. Five Benzos later, I discovered that 2mg of Xanax would gift me with up to four hours of sleep.
My next neurologist recommended a motor cortex stimulation implantation to be performed at the Harvard Medical School Hospital. In August 2017, I underwent that procedure placing a cathode plate between my skull and brain and implanting a device under my skin in front of my right clavicle. I was given a remote device which had been programmed which allowed me to raise and lower the amplitude of the micro current to the implanted cathode plate. After 141 days and having the device re-programmed three times in Cheyenne, WY I had positively no pain relief so I had the stimulating device removed, leaving the plate inside my skull. I confronted the neurologist afterwards and reminded him that I had been poisoned by Cipro beyond any doubt in my mind. He scolded me, shook his finger at me and said, “don’t ever tell a doctor that Cipro was the cause of your problem because it will distract the doctor from his analyzation procedure”. My response was, “Shame on you sir, it is onus upon any doctor to understand and explain the potential side effects or reactions which may possibly occur from a prescribed drug to his patient”. His response was, “I am going to remove you from my contact list”.
Now, nearly 24 years later I am back where I started. I have made minor progress along the way by placing myself in the care of a Functional Medicine Practitioner who helped me eliminate five underlying infections and coached me into escaping a very acidic gut which took almost 2 years to become pH balanced by drinking pH 8.0 alkalized water, using apple cider vinegar, many amino acids, a lengthy list of supplements including several Magnesium based supplements, including trans dermal oil and Epsom salt soaking. I began following the protocols included in The Fluoroquinolone Toxicity Solution, connecting to Floxie Hope which has been a gift from Lisa Bloomquist. Most recently, I discovered Zeolite which is the powdered ash from a Norwegian volcano to be dissolved in water and drank twice daily. It is a well known detoxification tool that attaches itself to toxins at the mitochondrial level and because it is water soluble, eliminates toxins into the urinary tract.
I am a 69 year old cyclist who has survived by being proactive and making some endorphins while on my bicycle. I have lived minute to minute for 1/3 of my life fueled by love and support and determination and diligence and the will to outlive many doctors who have swept me aside. I hope I can pay forward to anyone who has had the same misfortune. I am still ALIVE.
The story above is truthful, accurate and told to the best of the ability of the writer. It is not intended as medical advice. No person who submits his or her story, nor the people associated with Floxie Hope, diagnoses or treats any illness. The story above should not be substituted for professionally provided medical advice. Please consult your doctor before trying anything that has been mentioned in this story, or in any other story on this site. Please also note that people have varying responses to the treatments mentioned in each story. What helps one person may not help, and may even hurt, another person. It is important that you understand that supplements, IVs, essential oils, and all other treatments, effect people differently depending on the millions of variables that make each of us unique. Please use appropriate caution and prudence, and get professional medical advice.