This post is meant to inform and educate all my friends but, more specifically, the Floxies (individuals who suffer from reactions to fluoroquinolone antibiotics) about my recent health issues. This post will explain what is happening to me, but also, hopefully make others aware of this new illness and its relationship with fluoroquinolone reactions.
Recall that over the last several years I have suffered a number of conditions, exacerbated and/or induced by a reaction to fluoroquinolone antibiotics. In addition to the fluoroquinolone reactions that I experienced, last year I battled a deadly fungal infection called glabrata. Glabrata infections have become increasingly common with the use fluoroquinolones and other bactericidal antibiotics. Though I survived, I am now battling another infection; one that was likely present all along and misdiagnosed.
I recently found out that I do not have Crohn’s disease, spondyloarapathy or ME as previously suspected. A tick bite to my head left me with encephalitis (swelling of the brain) and meningitis (swelling of the spine). The symptoms emerged one week after the tick bite. I was hospitalized with amnesia, hallucinations (both visual and auditory), unable to put two thoughts together to make a sentence, and had to search for words to try and tell someone what I wanted. My speech also took on a stutter that to this day can be activated by fatigue or emotions.
I had and continue to have seizures that do not respond to usual drug treatments. The seizures would leave me for hours not knowing who I was or even able to recognize my own family. I would be treated with high doses of IV steroids in an attempt to bring the swelling down. It temporarily worked, but it was a double-edged sword because, as it was bringing down the swelling, it was also unleashing a slew of infections throughout my body.
Shortly after this event, I was diagnosed with Borrelia, Bartonella, Ehrlichia, mycoplasma, chlamydia pneumonia and Babesia. For those not familiar with tick borne infections let me let you know that Borrelia is Lyme disease and Bartonella, Ehrlichia, mycoplasma and chlamydia pneumonia are just a couple of the over thirty co-infections that the tick bacteria carry. Babesia, which is the worst of them all, is a Protozoa parasite from the family of malaria. Yes, that’s right, it’s a form of malaria!
Unfortunately, I would quickly learn that a tick bite I had four years ago and that gave me the typical bullseye rash, seen in up to 70% of cases, was my first exposure to several of these infections. Why is this so important? Well, if you do not treat these infections within the first six weeks they become chronic; meaning there is no way to eradicate them from the human body. Unfortunately, the medical profession is quite ignorant about these diseases and many do not even follow the CDC guidelines. My doctor four years ago, saw the rash. I told him about the tick bite and instead, of starting treatment immediately, he decided to test me for the illness first. As many know, the CDC testing for these illnesses is extremely unreliable with very high false negative rate. My tests came back negative, and so, I was not treated. At the time, I didn’t know about the pitfalls with these diseases or that a bullseye rash was a positive all by itself.
Within months of the first bite, I would start to have all kinds of weird things happen to me from ME symptoms, to spondyloarapathy symptoms, to dysautonomia, to MCAD to trigeminal neuralgia, to vasculitis, to Crohn’s like symptoms. As time went on, the problems would only mount, as infections slowly spread from one system to another, causing inflammation, destruction, pain and weird events that even my doctors were confounded by. I lived each day in terrible pain and spent weeks upon weeks in the hospital fighting one serious problem after the next. If I had not lived through it myself, I would not have believed that one person could suffer with so many symptoms throughout their body.
Lyme Disease and Fluoroquinolone Reactions
So, let me quickly step back here for a minute, shortly after the first tick bite, I was given Cipro for a suspected small intestine infection. It was three days into the Cipro treatments that I began experiencing fluoroquinolone toxicity. Since tick infections are neurotoxic too, it is difficult to determine whether my symptoms were tick-related, fluoroquinolone-related or both.
Apparently, when the bacteria from the tick dies, it releases a neurotoxic substance into the bloodstream causing severe toxic body-wide damage. This is known as herxing. Unfortunately, herxing and fluoroquinolone toxicity look exactly alike, so it is hard to say if I was herxing or floxed or even both. Making matters more difficult, many people with Bartonella are treated with the fluoroquinolones and they then go on to get floxed as well.
It is also important to know that the symptoms of Lyme disease and many of its co-infections look and act exactly like fluoroquinolone toxicity. This is because both cause mitochondrial, connective tissue, multi-organ symptoms. So these two illnesses act as one and the same and both are deadly in time. This is why this post is more for the Floxies. However, please know that ticks carrying these infections are located in every state, city, suburb and community throughout the world.
Ticks come in several sizes from the nymph that is no bigger than a period (.) to the size of a small raisin. They live in Chicago, Phoenix, and every other state and city throughout this country. No ONE is safe from them no matter where you live and over 60% of people will never even know they were bitten by a tick because they will not find it in the seven days that it is latched on. Just imagine something as small as a period attaching itself behind your ear, in your hair, in your groin or between your toes. You would never find it! And only 50% of folks with Lyme disease recall having a rash, so many may never know until they start getting sick. For those like me that do get tested, your chances of the test being positive or accurate is very low.
Lyme Disease Stats
This illness has become this century’s greatest plague as the numbers of people infected continue to grow by unbelievable rates. The CDC estimates 300,000 people are infected a year, but the ILADS which keeps better logs estimates the number to be closer to one million a year.
The death rate is in the thousands to hundreds of thousands a year. And those numbers do not reflect those who die from Alzheimer’s, ALS, MS, Parkinson’s, and several other diseases that are now being looked at by Harvard and Duke Universities as being symptomatic diseases of Lyme.
Lyme Disease and Neurodegenerative Disease
It has long been speculated that Lyme mimicked neurodegenerative disease processes, along with over 310 other diseases, but recent studies done on the brains of those deceased by these illnesses has shown a stunning revelation. Autopsy studies have found that a very large percentage (sometimes 100% ) of ALS, Parkinson’s and Alzheimer’s have borrelia in the brain. (These finding were discussed in the movie: Under our Skin. Other good videos to watch on the topic include those by Dr. Richard Horowitz ). Because of these findings, many individual studies have since been done on these groups, by treating Alzheimer’s, MS and ALS patients for Lyme and co-infections. The studies were mind blowing. All groups responded immediately to the drugs, better than they did to any of the standard treatment drugs used to treat those conditions.
Unfortunately, they will never be cured because there is no medicine available today that is able to eradicate these infections from the body. Nevertheless, the progression of their diseases and their symptoms were reduced and that potentially bought them years more with better quality of life. This has been such an amazing discovery that Duke University just built and opened the first building totally dedicated to studying these infections, with the hopes of finding better testing, vaccines, and effective treatments. Seriously though, we are decades away from answers. So for now, those who are not infected must take all precautions with their animals and children, even in your own backyard. Those that are infected must get early diagnosis and better treatment. This means our government MUST look at all the studies and stop following the bought for IDSA guidelines, so that we can educate our doctors everywhere on how to spot it and how to treat tick born infections.
Calls for More Lyme Disease Research
Recently, there were marches across the country that very few news media chose to cover. There were big time athletes, actors, and rock stars that have had their lives nearly wiped out by this illness. Several are still fighting for their own lives, but are also taking up fight for this disease. Some of the more well-known people with Lyme Disease include: Yolanda Foster (the Beverly Hills Housewives), Ashley Olsen (actress from Full House), Avril Lavign (Pop rocker) and the list goes on. Many of these people are also facing the fact that their children are also infected because they were either bitten or it was passed during birth. Yes, that’s right these infections can be passed through the womb, as well as, through breast milk and blood. The CDC is just now beginning to address the nation’s blood supply, because 40% of those infected with Babesia were infected after a blood transfusion. This is a serious plague that is infecting our nation and our human existence. According to the CDC there are more people being diagnosed yearly with these infections than HIV and breast cancer combined!!! And as the global warming keeps ramping up the numbers are growing exponentially each year.
The Cost of Treating Lyme Infections
So, what is the average cost of treating Lyme and its co-infections? Well, it estimated to be around $1.3 billion per year. This situation is being likened to the AIDS epidemic and those of us that are sick and fighting for our lives have to somehow find ways to speak out so that our government changes its attitudes and people lives can be saved.
I am fighting a losing battle at this time. What makes it worse, is that I had underlying conditions that have only complicated the illness and weakened my body. I will never be able to eradicate the Lyme infections from my body. Our hope is to slow them down and buy me some more time, but so far I have been losing the battle. The malaria symptoms appear to be overtaking me at this point.
My only blessing is that I have doctors that are working diligently to find a way to slow them down and keep me going. God bless Dr. Delacruz who even takes time on Sunday to call me and check in and let me know that he is praying every day for me. Unfortunately, every day is an unGodly struggle with pain, and I have been bed ridden now since June of this year.
My entire GI system has now gone into failure and my vascular system is quickly following. The malaria is to blame for this at this point. We are going start, yet another round of treatments, but as this infection grows stronger, the higher the risk of death is from the treatment. So far, the treatment has left me fighting fungal infections and SIBO as well as the herxing. We are forced to do everything by IV at this point, including my feedings. This is going to be a rough week, as we once again start a new regime of drugs. Since I literally just got out of the hospital a few days ago, I’m not looking forward to this. Now you know the fight I’m in and what I’m up against.
Unfortunately, I’m not in this fight alone my husband is also infected, as is my daughter, sons and granddaughter. My youngest brother who was diagnoses with MS almost twenty years ago and who has not responded well to treatments, has now also been alerted to this. He is now looking into finding treatment for Lyme. These infections have swallowed up my family and most who are infected are struggling with trying to get and afford treatment for their children and loved ones. To see what we go through with meds and to understand the cost of these infections, I posted some of the pics of my oral drugs. This is typical for Lyme Disease patients and this does not include the numerous IV drugs that we take daily. There truly are so many drugs that they didn’t all fit on the table. Many need multiple pill carriers to remind them if they took each one. You can see picks like this posted by Avril Lavign and many other Lyme patients. This is common to anyone who gets any of these infections and unfortunately, this is life long and daily, and most, like me, will still remain very ill and go on to lose their life. We need a cure and we can’t wait neither can our infected children wait.
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This story was published originally on November 12, 2015.
How are you Debra? I know this article is a few years old. I’m suffering in the same manner as you, and am unable to treat Lyme. I also have c diff, mold toxicity and roundup poisoning on top of Lyme, SIBO, 2 strains of Bart, and babesia. I hope you have made some steps towards improvement.
How awful. I know the experience of being let down by doctors—about a dozen for flq toxicity–but also, several years ago I had a bulls eye rash. The first derm I saw said they don’t have ticks in my town (which is absurd). He didn’t want to treat it. I went to a second one who did, and I am glad I did because the test came back positive. Now I am dealing with flq toxicity and a good half of the patients that both my naturopaths treat, have lyme. I have heard their frustrations similar to us floxies of not having doctors aware or even believing them. All the ones I see seem to be doing well with nutrient IVs, ozone, etc. Is your doctor a naturopath?
Hi Linda, sorry to hear that you are going through this too, but glad you are finding help. My doctor is an intergrative doctor which means he is an MD but also a naturopath, so he uses both. Unfortunately I just have so many issues going on and have sustained so much damages from the fluoroquinolones that it is making treating me very difficult, but I keep hoping someday I will get better. For now I just keep trying to make others aware of these illnesses, so hopefully I can help others before they reach this point. Good luck to you
This whole ordeal is just dreadful…I am so sorry for you…I am not nearly as bad. I was just wondering if you tried any herbal plant based treatments? I believe that is the path I will take….I have trust issues with AMA.
Hi Cheryl, I’m sorry you are going through this too. I hope one day mainstream doctors understand these illnesses and begin to learn how to treat us. However I don’t think that day will come until the IDSA has new seated members that are not former CEO’s or hold stock shares in any pharmaceutical or insurance company. I too have little trust in the mainstream doctors, but I have so many conditions right now that I still have to be treated by one, however I use an intergrative doctor which is one who us an MD and a naturopath, so it works out well. Unfortunately, due to being floxed I don’t tolerate a lot of things herbal or supplements included, so using them to treat my Lyme has not been an option. I just go slow with any meds and pray I can tolerate them but treating me is a real challenge for any doctor and scary for me. I’m glad though that you have found some treatment to help you and pray you continue to do well.