I would like to start by thanking you for coming here, and taking the time to read my story. I am assuming you or someone in your life has been touched by this illness, which is where your interest stems from. Whatever brought you here, welcome. While each person’s journey with Lyme Disease is completely unique…we all share many symptoms, fears, questions, pain…and hope, whether a drop or an abundance. That too, is unique to each journey…sometimes changing by the day, or with each new symptom or challenge.
I will apologize ahead of time, for I am not one to keep things short. I think you will all understand after hearing my story, that it is necessary to explain every step, every symptom and every diagnosis along the way…because so many have encountered at least one or many of the same diagnoses. So many of us share the same symptoms, similar struggles in finding help, and most likely heard ‘It’s all in your head’, or ‘It’s Fibromyalgia’, a doctor’s go-to diagnosis when they haven’t the slightest idea what this complex case is in front of them. When a doctor hears hoofbeats, they are trained to think of horses…..sometimes they miss the zebra before them. Exotic, and beautifully complicated for just the right doctor…the one who is still eager to learn and make a difference in this world. Thank goodness for the doctors that appreciate something out of the ordinary….if only they weren’t as rare 🙂
Bare with me….it is a 3 year journey, that is almost unbelievable. If I didn’t live it…I may think it was quite an embellished tale, but sadly…it was all too real. Painfully so.
My story actually spans 37 years now, but the part that rendered me ‘disabled’, started in 2012. Throughout my life I showed signs and unusual symptoms that I would finally learn, the hard way, were from a hereditary condition called Ehlers-Danlos Syndrome. ‘EDS’ is a collagen defect, a connective tissue disorder. This will come into play throughout my story, so it is necessary to tell you about this. As a child, I had a deep love for gymnastics. My first dream was to be an Olympic gymnast. Nobody in my family had ever been diagnosed with, or even heard of this disorder. I still don’t know which side I inherited it from, but have an educated guess. It can also be a spontaneous mutation, and I could be the first, and I passed it to at least one of my daughters that I know of, as of now. I first found out after a whiplash injury, that wasn’t even bad enough to go to the doctor for, that set off a chain of events that I never could have prepared for, or would ever wish upon anyone. Having said that however, EDS is not the true source of my ‘pain’, or what was causing me to be incredibly ill. Lyme has devastated me and my family, and I’ve lost years that I can never get back. I am choosing to use my experience to potentially save others a lot of time, energy, money and suffering. I firmly believe in paying it forward….so here is my gift to those searching for answers, or the missing piece to a very complicated health puzzle. No two journeys the same, but the pain, both physically and psychologically…we all share.
So, in 2011, we had purchased a very large Winnebago RV, completely on a whim. My husband and I were never campers….what did we just do? Well, we had just embarked on a year of great adventure, and wonderful memories for our children, some family and friends, and ourselves. Little did we know that we not only needed that year of traveling and bonding, but that our RV would be of great importance for future medical needs. Does everything happen for a reason…? I think so. 🙂 That whiplash that I mentioned, was in June of 2012. Little did I know at that point, that I had this inherited condition, ‘EDS’. So, when I did a flip on a giant inflatable bouncer, I landed on my rear (my gymnastics skills were definitely rusty) and for some reason, it was like hitting concrete. I’m guessing the ‘NO FLIPS’ sign really was there for a reason. Well, I rolled off and took a minute, since it knocked the wind out of me when my chin hit my chest..hard. My husband actually captured this moment on video and you can hear him saying “You’re gonna kill yourself!”, and we’re all laughing. It wasn’t nearly as funny in the coming days. I managed to get up and we went about our night, being tourists in South Carolina. We had been up and down the East coast, from Niagara Falls, to my favorite place..St. Augustine, Florida. My last memory of healthy, and truly happy times, are on that private beach where we could walk right out of our RV and down into the beautiful white sand. It was so private, that you could take your dog off leash, have more than enough room for a soccer game, and the closest beach goer was barely within shouting distance. Weather was perfect, I was suddenly losing weight and actually got into a bikini for the first time in over 6 years. The kids were happy, I was tan and enjoying piña coladas right on the beach, my husband got to kick a ball around and swim in the ocean…he was very happy. We all were. But as they say…’all good things must come to an end’.
In August of 2012, we had wrapped up our travels, had come home to discover some things that brought a beautiful summer to a very abrupt end. I had noticed on our trip home, I was having increasingly worse pains in my stomach/intestines, especially after eating. I seemed to be losing weight steadily, but my stomach would be grossly distended, often. Two bites of anything, and I suddenly looked 5 months pregnant. I started secretly buying gas tablets, and Pepto…the heating pad and I began a very serious relationship. I didn’t say much about it, because I thought I was just having a flare up from one of my two uterine diseases, or maybe it really was just gas. I also noticed that I was starting to experience a little fatigue, and had been extremely stressed due to an addiction issue in my extended family, which nobody seemed to want to handle. So, I took that on with the help of my husband and one uncle, and our already dysfunctional family quickly became even more dysfunctional. While dealing with this issue, the fatigue, the intestinal pain, and just dealing with everyday life as a mother and wife became increasingly harder, so I had paid my doctor a visit and now I’m finding out that my blood work revealed mono, or Epstein-Barr Virus. So, as the visits to rehab continued, and the chances of running into my mother, now….that is a story that is a book in itself, so I’m choosing to wait and have that published some day. Let’s just say, the stress was becoming too much, so I thought between that, and the fatigue, I was shaking as a result. It wasn’t until I unknowingly lost a couple layers of skin on my ankle, from my restless legs, rubbing against the ottoman for hours on end, that I was experiencing things that were becoming a real concern. I still figured it was all from stress, and I was so incredibly exhausted from the EBV. Well, at this point, from the time of the whiplash to this time, I had lost over 25 lbs., in about 4 weeks. Over the next 5 days, others were noticing me shaking, and several suggested I go to the ER, and let them take over with the rehab situation with my family member. Instead of listening, I pushed on and attending the family session at rehab may have been my breaking point. The kids had started school, I was sleeping all day, and when awake, I was worrying about my family member. Then, one morning, I woke up and I was no longer left with a choice. I could barely make it down the stairs. I vaguely remember walking into the kitchen, and my husband and daughters were there, and I was shaking from head to toe. I couldn’t quite catch my breath, which had me on the verge of panic, I couldn’t stand without feeling faint, and although it was very warm, I was freezing. My heart felt like a hummingbird in my chest, fluttering and racing. That morning, my whole world changed.
I finally went to the ER, and while we had been on our RV trip, I was making awareness art in the sand, and elsewhere for someone’s daughter who had fallen ill with something most had never heard of….Dysautonomia & POTS. So, while trying to raise awareness, I learned a thing or two about these conditions. I asked the ER tech if he could do an orthostatic test, and he was surprised, and asked how I even knew what that was. We chatted while he was given permission and obliged, and sure enough, my heart rate went up 64 beats from lying to standing. Right there, the decision was made to admit me. How in the world could it be possible that I just spent a good bit of our travels taking and editing pictures, trying to think of clever catch phrases to heighten awareness for a 10 year old girl, with something I had never previously heard of…..and now here I am. The next morning, the cardiologist came to see me and diagnosed me with Dysautonomia (malfunction of the autonomic nervous system), and at this time, he diagnosed me with Neurocardiogenic Syncope or NCS, because he admitted he was not familiar enough with it to be comfortable diagnosing POTS. Now, I am discharged with instructions to avoid all caffeine, and increase my salt intake, drastically. This is supposed to increase blood volume, sending more blood to the brain, which was currently, kind of being starved of it….leaving me in a fog, or what is known as ‘brain fog’. This was surreal. I just had one of the best summers of my entire life, and now I am getting a diagnosis of something I had recently learned, had no known cure, very few doctors understood, and even less treatment existed. Hmmmmmm….now what?
Well, about a month later, after having worn a holter monitor, and a capture monitor (heart monitors, one to record my heart rhythm and rate, the other to capture any cardiac events), I went to a neurologist at Penn, who couldn’t find anything really wrong other than an unsteady gait, and hyperreflexia (my knees are super jumpy..I’ve always had that trick). I go home, I deteriorate some more, my trouble swallowing progressed, my eyes started shaking back and forth in my head (nystagmus), and I could never get warm enough. Then…..the blacking out started. Up until this point, I had had warnings, and knew to sit as soon as my ears went warm. Now, I found myself tripping, I’d get to a squat and still black out and fall over, and leaving the house was completely out of the question because I could no longer go more than 5 minutes without my heart racing, and feeling faint, or actually doing so. I was put on a beta blocker in the hospital, but it wasn’t a therapeutic dose yet, obviously. It is now October, and after many unreturned phone calls from the neurologist, I went to a cardiologist that specialized in POTS. Postural Orthostatic Tachycardia Syndrome, is a sudden or over several minutes, drastic increase in heart rate, and typically a drop in blood pressure. This combination is what causes the fainting, or if not enough to make you faint, you feel dizzy, confused and just stuck in that ‘fog’. This cardiologist just so happened to have a daughter with Ehlers-Danlos Syndrome, Dysautonomia, POTS, Chiari (the brain herniates down into the neck), and a laundry list of symptoms that were sounding far too familiar. I was very fortunate that he did not ask me to take a tilt table test, which is how they usually diagnose POTS. My vitals and symptoms were clearly a textbook POTS case. What wasn’t so clear….the reason I had lost 48 lbs., and now weighed 92 lbs., was in a wheelchair whenever I left the house, and could barely hold my head up. My cardio saw far too much of his daughter in me, and he picked up the phone to make an emergency appt. with a world renowned neurosurgeon that specializes in EDS cases. A surgeon that I had heard referred to as ‘the EDS God’ or ‘my hero’. People I had met on social media, seemed to share a common constellation of diagnoses, and now here I am once again, waiting to see if I now had what some of my ‘new friends’ had, and had had brain and spinal surgery for. Surely this was not real. I had some very strange and random things happen throughout my life, medically speaking, but nothing that I thought would ever end up hearing an actual name for, let alone multiple, and none of them were considered common or even curable. When was I going to wake up from this nightmare, and go back to volunteering at my daughters’ elementary school, painting children’s murals, running errands, gardening, cleaning, shopping, reading…..where did that person go? Who was this shell, sitting in this wheelchair, listening to my HEART doctor, asking my soon to be NEUROSURGEON to see me URGENTLY…?? That 9 month wait that the surgeon had, was magically waived, and 3 weeks later I was in MD, about to meet this ‘Great and Powerful Oz’ (my name for this mythical man, that as it turned out…was from Oz. He was Australian!). This strangely calmed me a little, that I had this strange, secret feeling before ever meeting….weird, maybe, but it calmed me, so I went with it. I had never had an experience with a doctor, quite like this one. First of all, I still felt like I was going to wake up from this nightmare, because I shouldn’t be in this office, talking to this man about my spine, or my brain, or any of the things we discussed over 5 hours…yes, 5 hours. In those 5 hours, I learned that I did indeed have Ehlers-Danlos Syndrome, I didn’t quite have Chiari, but I did have things that were actually stumping the wizard. After 5 hours, I left there in a bit of a panic, because he wanted more imaging, and to meet me against the next day. Also, if my case was stumping this particular doctor..there seemed to be no hope for me. This man that was so in demand, with a 9-12 month wait, wanted to see me two days in a row, and was really taking his time, methodically checking MRI images, CT images, observing me walking, standing, sitting, breathing, poked me with pins, and did strange tests that even evoked a giggle, they seemed too simple to show a man of his caliber anything medically worth mentioning. Turns out I was wrong. After a total of eight hours with the amazing Dr. Henderson, I was diagnosed with at least 11 EDS complications, at least 3 of which could be surgical. That silly bit where he walks up and surprisingly stabs you with a pin..in the cheek..actually had purpose. I had lost sensation over 95% of my body. It had been that way my entire life, so I never knew any differently. When someone says ‘you can’t miss something you never had’…its very true. When he poked the soles of my feet, and I didn’t even flinch, he knew that I had damaged my spinal cord with that whiplash, and it was because my spinal cord was tethered. It was tethered my entire life, and was actually tugging my brain whenever I put my chin downward. Fun stuff, right? Sure. SO, a tethered cord is a common EDS, surgical complication. Your cord should hang freely, roughly to the center of your back. My cord was attached to the base of my spine, by fatty tissue, called filum, and when my chin hit my chest, I stretched my cord about 20%, causing a cord injury, and some of my symptoms. The tethered cord was causing excruciating low back pain now, deep bone pain in my legs, vision changes, and bladder issues, then gradually my left foot started turning inward….just enough to make me wonder ‘what in the….?’. So, I was sent on my way with a million things to think over, a script for an unpleasant bladder test, called a urodynamics test, and was told to come back in about 8 weeks. In the meantime, I had to wear a hard cervical collar to see if it made me feel any better. Turns out, it improved my POTS a little bit after about 2 weeks. It was taking some pressure off of my brainstem, and kept me from further stretching my cord. Seems he is right about some things….good sign 😉
So, after all of this, I go back, it is now June 13, 2013. I had my bladder test and it confirmed a neurogenic bladder, which was the last clue he needed to confirm my tethered cord, which was considered occult because it wasn’t clearly seen in imaging, and then we sat to schedule surgery. What in the hell was going on? I felt like I was constantly waiting for someone to jump out and tell me this was some sick prank, I think I probably could have accepted my husband slowly poisoning me to death, over the diagnoses that just kept coming now. So, June 13, 2013, I agreed to have a surgery where this man was going to actually handle my spinal cord. Let that sink in for just a second. I’m not saying my spine, I’m saying, he was going to open up my spine, and release my stretched, and attached spinal CORD. In my mind, even now, I think…..that is one part of your body that should truly never, ever, even in a sci-fi flick, be exposed to the light of day, let alone be within slipping distance of a scalpel. Surgery was set for 8-13-13. Anyone seeing the pattern with 13? Not a very lucky number for me. My daughter was also turning 13 that month, and well..its a great age. Ha! So, I was now left with 2 months to just lie around……and panic. The ‘what-ifs?’ began the very next day. What if he didn’t sleep well? What if he had one too many cups of coffee, now he’s jittery? What if I die before cleaning up the embarrassing mess that is my bedroom? What if I don’t make it, and leave my daughters without a mother? What if I wake up paralyzed? Too much. Now, little did I know that I had two things going on in my body, that make the nastiest pair, and I’ll get to them soon.
This is now summer of 2013. Surgery is scheduled. We made the decision to take the kids with us to MD, insurance is great, everything is taken care of. If everything is taken care of…why am I in a 24/7 panic, and wondering which route I would take to the closest bridge. Now, I would never…I have two beautiful daughters, and a man that was actually manufactured to be my husband…he’s that great….but I definitely was not happy, and it went so far beyond nerves over surgery. I also wracked up another shocking diagnosis, at my ripe old age of 34….glaucoma. My grandmother was diagnosed with glaucoma….at 77! I should also mention that I paid a highly respected GI doctor, at Jefferson Hospital in Philadelphia, a few visits. After much discussion, an endoscopy, colonoscopy, nuclear swallow test, etc., I finally found some reasons for all of my GI discomfort. I was diagnosed with SIBO, or Small Intestinal Bacterial Overgrowth, Gastroparesis (a paralyzed stomach), and Proctitis….the proctitis was another missed red flag, but so were the other two GI diagnoses…more on that in a bit. The neurologist I had seen prior, who left my panicked calls unanswered, finally called me back 5-8 weeks later (somewhere in there) after I filed a complaint. Now, his initial exam was really unremarkable…now, seeing me a second time with all of the same scary symptoms, suddenly has him setting me up for admittance to U of Penn Hospital, and my results were deemed ‘bizarre and scary’. Ya think? Thanks doc….I didn’t need a degree to come up with that!
Things then reached an all-time low in the fall of 2013. A dear friend that I had met online, also an EDSer, was in bad shape after multiple brain/cervical/spinal surgeries over the years…ugh, kills me(!), but she is the one that pushed me about EDS. She knew that my symptoms were EDS related, and I ended up in the operating room 3 times. You form bonds with people that can understand a sudden change in the direction of life. You can start a technical conversation about how to fix our MTHFR methylation issues, and actually finish each other’s sentences. You know what it means when they say they don’t have any spoons today, or they’re crying because one big talk show is actually going to talk about one of our rare conditions for a whole 2 minutes! Anyway, the panic continued, I was having issues with agoraphobia, and light and sound sensitivity. I no longer felt like any semblance of myself. I looked in the mirror and had no idea who was looking back at me…the physical change was shocking, but internally, the sick person that I saw externally, didn’t touch the pain of the illness and sadness within me. I’m now a year into this rabbit hole.
Surgery comes, prior to my friend’s visit, so let me back up, and I didn’t sleep for days before, and my anxiety was at a level I didn’t know a human was capable of, without spontaneously combusting, or something else movie worthy. I get to the hospital, then you wait a ridiculous amount of time, which allows the torture to get you just to the point of snapping, and then the goofy juice comes, and all is well. Surgery goes well, I happened to have dystonia while under anesthesia (this is important later), which I realize now that I forgot to mention my daily tremors that I had and had gradually gotten worse, to the point of being daily. Well, not much went smoothly after that. Now given this is a website about Lyme Disease, there are clues forming that led my suspicions there, and they were repeatedly shot down, by numerous doctors and specialists. Please pay attention now, because the majority of doctors in this country either do not want to treat Lyme, for reasons out of their control/political, or don’t really even know how to treat it, or that it can be debilitating, chronic, even fatal. Sad state of affairs….hence the reason for me putting my efforts here.
I was lying in my hospital bed, I believe the day after surgery. I didn’t have unbearable pain in my back, so I was on a minimal dose of IV Dilaudid…1 mg. I felt like I may need to urinate, so I had to ask for a bed pan. My luck, I got a lovely old-fashioned metal tray, cold and hard. The nurse slides it under, and for those of you that have never been hospitalized, or in this position….our bodies have had a lifetime of training, to involve gravity and positioning, to void in any way. So, my rear is higher than my head, and its taking forever. Next thing I know, its been a while and the nurse probably forgot the bedpan at this point….and that’s when the tremors started. Metal bedpan, pressing against the bandage over my fresh spinal incision. I’ve had full body tremors last several hours before, it’s exhausting. To have a 4 hour episode, after spinal surgery, on a bedpan, with 4 nurses staring at you and not knowing what to do, and sometime in the third hour, I passed out and then awoke to myself shaking on the bedpan still. Needless to say, it was a terrifying experience, and I was questioning whether or not I had just made the biggest mistake of my life. (I’ll post video snippet below). Final plan, my surgeon ordered them to push Narcan….he had his reasons, and it wasn’t because I was on too many meds…I wasn’t on enough, really. So, while all of this was going on…it was after the start of anesthesia…then I was given antibiotics and steroids. Pretty standard after surgery. Well, little did I know that what I just had happen…..was the result of Lyme Disease. The very disease I had questioned nearly 10 doctors about, at this point….all met with a resounding ‘NO.’.
So, what you see happening in the video, many Lyme patients have experienced. I know EDS patients, or other patients with several of the same diagnoses that I received, experience this as well…..and have yet to be tested for Lyme, or have been tested by our flawed Lyme testing protocol, provided by our very own CDC. They are supposed to protect us from Infectious Diseases, they are supposed to prevent these diseases, hence their name, the ‘Centers for Disease Control and Prevention’…isn’t that a joke…please, understand that my anger is completely justified.
So, I end up having a relatively quick healing process, when it came to the incision and and getting back up and walking, but when it came to my neurological and psychological state…far from being well. After we had our follow up with Dr. Henderson and I was cleared to head back to Pa, and my own bed (yay!), I was hopeful that this was the start of recovery, and now that my cord was released, I would slowly begin to get my life back. Boy was I wrong!!
Let’s jump back to that visit from my friend, Mari, who had been through this surgery, and about a dozen others. It was about 3 months after my surgery, and during her visit here, to take a trip to Dr. Henderson with me, so I could follow up, and she needed urgent attention. Little did I know, that when I was talking to her, and reaching above my head to hang a plant, I felt a very sharp pain in my skull, like someone had just hit me in the head with a hammer. I quickly sat down, and she noticed the look on my face as I grabbed my head. She asked if I was alright,, and to be honest, I wasn’t sure. A few days went by, and after she left, I went back to resting, and things were about to take a turn that would bring the strongest of men to their knees, begging for mercy.
I awoke one morning to this crushing pain in my skull again, and I sat straight up in bed, waking my husband with my panic, and vomiting. I sat on the bed, holding my head, sobbing and yelling at my ceiling, God, whomever, asking ‘Why?!’. I had been through enough in my childhood, my teenage years, had horrendous, life threatening pregnancies, it just seemed like I was not getting a break, and I was never meant to experience true, sustainable happiness. I was beginning to feel like the universe was telling me to just give up….that I was nothing but a burden. The days gradually got even worse, to the point that I spent the entire winter lying flat, in pain like nobody should have to experience, and vomiting whenever it would rain or snow. I did every bit of our Christmas shopping on Amazon, and found myself setting up another surgery with my neurosurgeon. January 2014, I had an ICP (Intracranial Pressure) monitor/bolt placed through my skull, into my brain. I spent about 36 hours in the ICU, after we discovered that I had negative pressure, that is indicative of a spinal fluid leak (CSF leak). (I explain more about this in my post titled ‘My fight with PANDAS). So, I had a spinal tap to try to repair the leak with a ‘blood patch’, and spent another day in the hospital, in MD, and was then released with yet another diagnosis…PANDAS. This is typically a pediatric diagnosis, but here I was at 35 years old, getting what seemed to be the answer to my relentless anxiety and panic. My neurosurgeon is accustomed to patients complaining about pain, and headaches….for me, I was able to tolerate an incredible amount of pain, because it became secondary to my earth shattering level of panic. So, I was sent home on penicillin shots, to be administered every 3 weeks, into my rear…fun. Well, turns out this is what put me on a new path, or rather, return to a path that I had always had in the back of my mind, but seeing as it was repeatedly dismissed, I had started to think that I really was just losing my mind.
Once my neurosurgeon diagnosed my PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep), I was on a new mission. How do I fight this, and who do I see? Well, I was referred to a pediatric neurologist in NJ, and we had a couple of phone consults, then went to visit him in person. Brilliant man, but not the right doctor for me. He prescribed an antiviral in addition to the penicillin shots, and my panic suddenly turned into a psychotic break one morning. I ended up having to need 911 in March of 2014, because my vitals were anything but stable, and I could no longer fathom another day on this earth, in this state. I have always been fascinated with science, the human body, medicine, and especially the brain. That didn’t mean I wanted to test out every illness, or feel the effects, to better understand it all….reading about it, or watching Grey’s Anatomy and Mystery Diagnosis would have been enough to satisfy my curiosity….this was a true crash course in a lesson that I hadn’t exactly studied for.
So, more extensive testing, including some genetics were ran, and we found some more fun news, but nothing stuck out more to me, than the one thing that this neurologist found to be the least significant finding, and even emailed me with a very emphatic email, in all caps, to tell me once again that I most certainly DO NOT HAVE LYME DISEASE. Alrighty then. He knows best…he’s a neurologist after all, right? But, if I had this one particular Lyme band present on my Western Blot, coupled with a black mass in my brain MRI’s that couldn’t be explained (actually in my jaw), and a proctitis diagnosis which has the leading cause listed as being syphilis (a bacteria so similar, yet so different from the Lyme bacteria), and my immune/central and autonomic nervous systems were all failing, this left me with so many more questions. So, I decided to stop the penicillin shots, and I hit the books and the internet. After explaining my recent findings, and what I was experiencing, on Facebook, this one friend popped up again with ‘Steph, you HAVE Lyme!’. Well, if that was the case, I needed the right testing, and I knew it wouldn’t be cheap, and at this point I was aware that receiving that diagnosis would not make for a quick treatment and recovery…I knew I was in for a fight….with my body, my mind, doctors, insurance, and more.
So, I began my research, and more and more signs pointed towards Lyme, but my anxiety was so bad, I couldn’t even take on this fight, so I made an appointment with a Lyme neuropsychiatrist that was just a few minutes away. Ironic how we’ve been traveling to other states for 2 years, seeking answers, having surgeries, and all along, my answer was literally around the corner. Luckily, this doctor was able to see me the very next day, after hearing the desperation through my tears, on the phone. Within 10 minutes of speaking to this doctor in person, and hearing my particular constellation of diagnoses, she clinically diagnosed me with Lyme Disease, then listened for 2 more hours as I recounted my trip through hell, to get to her. Sadly, far too many have traveled far and wide, and spent many more years than I, to receive the very same diagnosis. She explained how Gastroparesis, Dysautonomia, POTS, anxiety, depression, panic attacks, PANDAS/PANS, etc…were all linked to Lyme. Even my hereditary EDS was being made worse by these burrowing bacteria, invading my connective tissue, joints, etc.. This time, when I left this particular doctor’s office, I knew that I had finally finished my puzzle, and I now had to wait 4 weeks for my official results from IGeneX, to see just how right she was, and what other infections had tagged along for the ride.
I received a call in August of 2014, that my results were in, and she would like me to come see her. So, my husband and I went the following night to get my news. This doctor told me that she wanted to see my face when she gave me the results, but I don’t think she really expected the reaction that I had. The first words out of her mouth after that were ‘You have the most positive Lyme results I have ever seen’. Well, coming from a doctor who has suffered from this very same disease for nearly 30 years, had a husband pass from complications of it, and had 4 infected children….I asked how long she had been practicing in the field of Lyme. She said she had been specializing in Lyme for roughly 14 years. I suddenly burst into tears…and she looked at my husband wondering whether they were tears of, well…what, exactly? I heard him say it was a mix of relief, frustration, fear, just a bit of everything. I guess I was mainly relieved to have finally solved this medical puzzle, but at the same time, I was terrified, because I was already well aware that Lyme is not something you can just go to your primary doctor for. I had a severe case of late stage Neurological Lyme, and the common, and nasty, co-infection, Bartonella (and an inconclusive test for Babesia, a bug in close relation to the one that causes Malaria). She gave me two doctor’s names, and I had heard more good things about one than the other, so I followed my gut, and…..well….my gut is one thing that has never let me down, even if it was diseased too.;)
In late August of 2014, I met my LLMD (Lyme Literate MD) for the first time, and he told me that he never had a patient as sick as me, in nearly 19 years of working with this disease. If you’ve seen the excellent documentary, ‘Under Our Skin’, you’ll understand how severe my case was, when he compared me to the likes of ‘Mandy’. That was a very sobering moment, and left me feeling very vulnerable and concerned that I may be beyond repair at this point. We discussed some options, and although he is a doctor, I advise everyone to be their own advocate. Educate yourself to the point of being able to question any decisions regarding treatment…whether Lyme, Diabetes, or a stroke…you have to be able to be a part of the decision process, or have a loved one who can, because nobody, and I mean NOBODY knows your body like you do, not even your doctors. I respected his decisions and advice, but I knew, that with a history of Cyclic Vomiting Syndrome, and multiple GI diagnoses and symptoms, I could not take on an abundance of oral antibiotics and supplements. I knew that a picc line was used in many Lyme patients, that had chronic, severe cases, and that it was the best and most direct form of treatment. So, after going back and forth about this, he agreed to write the script to have the picc line placed, and I left with a mixed sense of fear and hope. That combination causes much internal confusion. So, after having my picc placed, the home nurse was set up, and on Sept. 17, 2014, I had my very first dose of IV Rocephin pushed by the home nurse. One thing I have to mention. I also pushed for IV Benadryl, because if I was going to be nauseous from the antibiotics, I wanted to be able to prevent trips to the hospital to stop my cyclic vomiting, and the hospital always pushed IV Benadryl to help me, so why not have it handy to prevent further misery, right? Again….we know our bodies, and this method has worked wonders for me over the past 8 months, from nausea to insomnia. The nurse first pushed the Benadryl, making me very loopy and sleepy, then pushed the antibiotics. I think I may have fallen asleep before she even got out of my driveway, but I was now about to start the real fight of my life. I awoke about 6 hours later, to myself shaking. I called for my husband, and as it became more and more severe, I wondered if I was really going to be able to continue this fight. (I will post the video soon, of my very first known/obvious herxheimer reaction, like the ones experienced prior, during and after surgeries). I was so determined to get better however, that I was not going to let this deter me. I texted the video of my reaction to my LLMD, and he told me to immediately stop treatment, because my herxing was too severe. Crushed. One treatment?! Surely, there has to be another answer. Well, I did stop the treatment, but my herxing not only continued, but became increasingly violent over the next few days, until I had no choice but to go to the ER, because I was involuntarily hitting myself in the chest, throat and face. It was much like seeing a violent seizure, except I was fully aware of what was happening, and still couldn’t control it. (If you aren’t sure of what herxing really is, google ‘herxheimer reaction’…its really a histamine response to neurotoxins being released from the bacteria dying off, yet another reason the Benadryl was a good idea…it actually delayed what would have been an immediate herx). Anyway, I had my husband stay with the kids, because they needed him, they’d been through, and witnessed too much suffering, so I had my Aunt take me to the ER. Luckily, I found one of the few ER doctors not completely opposed to the idea that Lyme Disease could cause such horrific suffering, and actually had heard of herxing, and after taking one look at me, he told us that there was no way I was going home, and he had me admitted. Little did I know this was about to turn into a 10 day, miserable hospital stay.
When I say you have to be your own advocate, not only do I mean it, but in the world of Lyme Disease, you actually have no choice. You need to understand the politics surrounding Lyme…how it came about, how the testing and treatment guidelines were set, and how very little doctors are taught, because according to our CDC, it is a simple infection that can be cured in 30 days or less, in every case. Anyone with symptoms beyond 30 days, does not have Chronic Lyme, they have some ‘Post-Lyme Treatment Syndrome’. I’ll let you guess what I think they can do with that nonsense. I’d like an IDSA or CDC member/doctor waste away for over 2 years, miss out on nearly every single thing in life outside of the four walls of their home, or a hospital room, endure countless doctor visits, procedures and tests, have medical bills as tall as myself, and their children witnessing some incredibly unfortunate circumstances. Then we’ll see if they still want to deny the existence of this disease. A disease that they deny because they don’t profit off of healthy people….but they do profit off of patents held for future vaccines, and on the live bacteria itself. As long as they are enjoying their mansions and Porsche’s, what do they care if you or I are dying at home, as long as we keep paying Big Pharma, and they all keep lining each other’s pockets. They don’t care….they love it. If you think the CDC truly cares about your health and welfare…you are sadly, grossly mistaken. From the food we eat, to the vaccines we receive…it is all about money, not keeping us healthy. Read up on GMO’s, and look at the vaccine list now compared to 20 years ago. Wonder why we suddenly have a staggering 1 in 60 children diagnosed with Autism, or are the country most afflicted with chronic illness? Just look at the difference between what our country allows to be added to our foods, vs the rest of the world. That alone is enough to change ones feelings about how we have to protect ourselves, and advocate for ourselves…otherwise, we will continue to be one giant cage of medical guinea pigs. Disgusting.
Anyway, back to my story. So, I was admitted to the hospital, and initially the doctor overseeing my case in the hospital was stating that I had an allergic reaction to the IV Rocephin, and unbeknownst to me, they had switched my antibiotic to IV Doxycycline. The second I heard this, I requested to speak to the Infectious Disease doctor on staff, because I was told that was the only person able to override this decision, but speaking to a doctor that is part of the IDSA, the very people who set the treatment guidelines adopted by our CDC, was about as helpful as asking a man with no legs to carry you from a burning building. I would lie there before countless nurses, the ID doctor, the attending doctor, several revolving roommates, and every morning there was a round of medical students….and every one of them was about to hear and see the true effects of late stage neurological Lyme, and Bartonella at it’s best. I kept my ‘Lyme Bible’ (The Compendium of Tick-Borne Disease) right on my bed, along with my laptop, and all of my research. Every morning when the med students and nurses came around for rounds, and they were consistently misinformed about my case, I immediately corrected whomever it was, even the doctors. I most certainly was not there for an allergic reaction to Rocephin, because if I were, why did they have me on an IV Doxy drip ,and I was still having the same reaction and they let that continue? Oh, that’s right, because it wasn’t an allergic reaction, they knew it, and the ID doctor was well aware of what herxing was, but we don’t dare let these fresh med students hear the truth about Lyme Disease! Ha! Try and stop me. So, every morning, when they came around, I corrected the doctor or nurse giving the report, and told them all to do their homework, because not only can Lyme be chronic, but it can be devastating, debilitating…even fatal. Some thanked me, some looked horrified, and some asked questions…all acceptable. Horrified is fine, if it makes you interested enough to look further into it. So, since I was a good distance away from my LLMD, who barely knew me at this point, and had no privileges at this hospital, my husband and I just kept in contact with him, and kept him out of it as much as possible, because those in the Lyme world know, we must protect our LLMD’s, since they are the only ones who care enough to risk EVERYTHING to give us our lives back. It wasn’t his fault that the ID doc wouldn’t put me back on Rocephin. I knew I had to fight for myself….so I did. I was only about 94 lbs., having tremors or dystonia, some hallucinations, my core body temperature had dropped to below 96 degrees, my vitals were erratic at best, they put an alarm on my bed because I was a fall risk, and for those 10 days I was the mystery patient on the 4th floor. I had a couple great nurses, eager to learn, and fascinated by my case, and several who didn’t care to learn and just wished I would be discharged because they had no idea what to do when my herxing would start. They’d look on, horrified and confused, and I had to muster the two most important words, willing them to escape my lips….’Ativan’, and ‘collar’. It seemed the Ativan took my tremors from a violent 10, on the ever annoying 1-10 scale, down to a slightly less traumatic 8. Having EDS, and cervical instability with measurements that are well within surgical limits, I couldn’t risk my neck being injured while thrashing around, so instead of the nurses communicating this to each other upon shift change, they all just watched me struggle to get that word out, while my cervical collar was hanging on the rail right next to my floppy head. It wasn’t until at least a full week into this stay that I happened to have the mother of all herxes, right during shift change, and a crowd of nurses stood by my door and around my bed, some witnessing their first herx, others now accustomed to them with me, that I finally saw a shift in some attitudes, and even some compassion and sympathy from the most skeptical. The charge nurse held my legs down, while another managed to get my collar on, while yet another ran for Ativan, and the rest just stood watching and whispering. I was drenched in sweat, and once the tremors subsided, I still had to endure about 30 minutes of bizarre, involuntary contorting, every time. I looked possessed….no exaggeration. So, they were all late going home that night, or starting their shifts. You’d think this experience was just awful for me, but really, sadly, it was a breakthrough. If it meant 10+ nurses just learned a thing or two about what this disease can do to the human body….I was happy to take one for the team, yet again.
I’m going to skip over the horrific details of that ridiculous 10 day stay, and how very little our healthcare system knows, or pretends not to know, about Lyme….either uneducated, or self preservation…either way, it’s shocking.
SO, after coming home from this hospital stay, I went back o the IV Rocephin, which I have remained on to this day (June 1st, 2015). Now, let me state again that I am not a doctor, but I will share some things that I credit for getting me to the doorstep of remission. First, doing my homework was key, then getting to the right doctor (LLMD). After I got home from the hospital I reached out to a beautiful young girl who had successfully beat Lyme into remission by going to Germany for treatment. I asked her if she would be willing to share what her treatment consisted of there, and it was really just three key things. IV Vitamin C, IV Ozone and Bio-Photon. She didn’t think I’d be able to legally find these treatments in the US, minus the vitaminC, but little did I know that the construction going on in my own doctor’s office, was for future Ozone treatment! After hearing what got her to remission, I called my doc, mentioned these three things and he asked me if I was truly interested in Ozone. Hell yes I was! Those Germans know what they are doing when it comes to Lyme, and my friend was living a normal life again, and really, what did I have to lose at this point?!
So, I signed up for IV Ozone treatment as a study, and I was my doctors first official IV Ozone patient. I had zero side effects, not even herxing. This was early in October, 2014. By Halloween, Oct. 31st, I had had my 8th treatment, and had a magnesium drip. I came home feeling the best I had felt since before getting sick. I even managed to walk to my daughter’s school and back, which was well over a mile after visiting some teacher friends and enjoying the weather and the joy of not needing my wheelchair!! Could ozone really be my answer?? I had upped my dose of oral vitamin C at home, and my doctor added IV Glutathione. I was nervous about this one, but it is something our bodies produce naturally, and I watched videos of the miracles it worked for Parkinson’s patients, and my tremors looked similar, so I gave it a shot. It initially made me feel slightly tipsy, and my legs would go warm like they do with a shot of alcohol, but sure enough, between my IV antibiotics, IV Ozone and IV glutathione….I was onto something here. My daily tremors, that had been with me for over 2 years at this point, were disappearing. I was starting to feel less sick when I would spend extended periods of time sitting up. I continued to see improvement throughout the winter, mostly with those 3 things that I mentioned, but I also took something called GI Encaps everyday to help with leaky gut (very important), also Glutagenics for the same thing. I also drank water with lemon everyday, in addition to taking milk thistle and my IV glutathione….all great for detoxing…and epsom salt baths a couple times each week. I was taking 500-1000mg of Vitamin C, 3-5x daily (can’t all be absorbed at once, so I would break it up throughout the day). I have been on a beta blocker since my very first visit to the ER, and it is one med I am still dependent on. Not too bad though, considering at one pout, I was up to roughly 14-20 prescriptions daily, 3 blood pressure meds daily, including an emergency nasal spray for when my bp was in the 60/40 range. I’m now happy to report that I am off ALL blood pressure meds, I have only used my wheelchair once since February (!), my POTS, PANS, stomach/intestinal issues…you name it….all improving, or nearly gone! By my 16th Ozone treatment, I had the breakthrough I was waiting for. It was in early February, and I hadn’t had a true fever in well over 2 1/2 years. If I reached a 99.9, that was a very high temp for me, and I felt like death. My core temp was ranging between 95.6-97.7. So, in February, I was SHOCKED when I had a reading of 102.2 on my thermometer, then soon after, 104.4!! I felt too awful to even call my doctor, so I shivered, and had my husband bundle me up with a cool rag on my head, and I went to sleep. I spoke with my doctor the next day, and he and his nurse agreed that this was great news, and seemed to be the immune system breakthrough that I had fought for! Ozone is known to be an immune system modulator, and although I do credit ozone for saving my life, it really was a combination of things, but it certainly got me over the hump sooner than I would have gotten there without it! Many people have asked me if I felt the antibiotics were necessary, or would Ozone have been enough? In my particular case, since I had such a severe, and seemingly endless herx with my first 2 weeks or so of IV antibiotics…I have to give credit where credit is due. The antibiotics certainly did a lot of damage to these bacteria, and probably better prepared my body for the powerful ozone that is capable of even penetrating biofilms. So, for me, the antibiotics were necessary, and thanks to the ozone, I’ve never needed a cyst buster, like Flagyl. Now, I know there are skeptics, and Ive had a man tell me that Ozone is poison, which is nonsense…you can research it yourself, there is even an NIH article on Ozone, and how it is considered safe and has been around long before the discovery of penicillin. It is still considered standard practice in certain parts of Europe, and dentists use ozone here in the states, everyday. As with any treatment, surgery, medication…there are risks with everything. I’m in more danger crossing a street or being in a car every day than I was having this treatment. Having said that, it is entirely up to you to research ozone on your own, whether through the IOA (International Ozone Association), through Dr. Robert Rowen’s website and youtube videos (protected, openly practicing Ozone doctor), and I’ll include a picture here with information from Dr. Robins, another openly practicing Ozone physician, but not for Lyme. Dr. Rowen is in Ca, and Dr. Robins is in NY, and then there is also Dr. Shallenberger in NV. All use ozone, safely and with much success. I have yet to find someone who does Bio-Photon, so if you know of someone who does this, please contact me via the email in the bar at the top. This is wonderful for people who are chronically ill, and for people with Mitochondrial Disease, as it is supposed to reactivate the burnt out mitochondria.
Anyway, I think I can end my story here, but I am open to any questions, especially to fill in gaps, or to help you navigate this complicated Lyme world. We are like a secret society, hiding our doctors, silently suffering, and going broke in the process. it is a depressing and lonely life with Lyme, which is why I chose to make educating and advocating my new purpose in life. When you become disabled, you have to either find a new purpose, and something to fill your time….or lose your mind….it’s really that simple. So, I am near remission, but just had a minor setback as I developed extensive clotting in my arm with the picc line, and had a port placed in my chest about a week and a half ago. I hope to take a break from all treatment in the next 4-6 weeks, and finally enjoy a summer with my kids, husband, and friends…..it’s been too long since I could keep up, and truly enjoy myself.
As you can see, it took me a long time to get my correct diagnosis, not that the others were wrong, they just weren’t the ones making me so sick. That’s one thing I’d like to stress to anyone reading this that has EDS, Dysautonomia, POTS…none of those diagnoses should make you feel like you have the flu everyday, or make you feel like you are dying. EDS may be hereditary, and can cause horrific pain, and surgical complications…but it shouldn’t make you feel ‘sick’. If you are feeling that way, and its not due to EDS/Chiari related migraines, or high or low CSF pressure…then I’d be looking further for answers. Same for Dysautonomia/POTS/Gastroparesis……all caused by Lyme in me, and my 2 daughters. In the past 8 months of treatment, I’ve successfully rid myself of all of the Dysautonomia symptoms, and its subsequent diagnoses, by roughly 80%. Like I said, no bp meds anymore, vitals aren’t perfect, but they’re no longer keeping me in a wheelchair, or keeping me homebound. Even my PANDAS/PANS diagnosis….my least favorite of all, because there is nothing worse than not being in control of your mind…..at least 75% better since finding and treating the underlying infection. PANDAS is always piggybacking an infection….it is not a disease, but an alternative fever response. Instead of catching strep when around someone infected, I developed encephalitis. My brain/brainstem/basil ganglia…all inflamed, and I felt like I was losing my mind. It is a horrific diagnosis, and I discuss more in ‘My Fight with PANDAS’.
I hope that by sharing my story, or most of it anyway, at least one person has gained some kind of hope, or can maybe devise a plan, and find a path to wellness. I should also stress that diet is VERY important. Boosting your immunity through healthy eating, gut healing supplements, vitamin C, and whatever else your doctor recommends, is a big part of healing. Sugar is a huge NO. Lyme thrives on it. There is so much more we could discuss, and so many other options regarding treatment….medical, natural and alternative. I have tried herbals, and am interested in a Rife machine, but unless I relapse, I don’t need them at this time….but I’m always open to anything that has proven to help others. There will be a page devoted to alternative treatments, and so much more.
I am sorry that this site is such a slow work in progress, but between having ‘Lyme brain’ and adjusting to living again after so long….I’m just doing my best. Thank you for taking the time to read my Lyme journey, and I hope you all find success in beating this hideous disease. Help and hope are out there… you just have to be open to accepting what comes your way. We are all in this together….and I hope you will stick with me as I continue to add to this site, and work on healing my two daughters, both recently diagnosed with Lyme and co-infections. Lyme….the gift that keeps on giving..