The story behind, "~7~ SEVEN LYME FACTS THAT COULD HAVE SAVED ME":
My illness originally began (in the summer of...I think 1999) after tent-camping on the Yosemite valley floor, where none of the animals have been wild for generations. They were everywhere, and even those of us who always knew better than to feed them still had them dashing under the picnic table like a family dog whenever our toddler dropped a morsel. Then in the afternoons, coyotes would amble through our campsite with overfed squirrels in their teeth. It was almost a comical scene, except that we both know how devastating this illness is, which makes none of those camping scenarios quite so amusing now.
So, I actually had two experiences with ticks before getting a diagnosis. The first one in Yosemite was as sneaky as the ticks themselves. No tick. No rash. I had come home from Yosemite ill, but not in an acute, undeniable way. Instead, I got a vague, slow-brewing infection with, migraines, progressive fatigue, and "fibromyalgia".
Clueless, we returned to the "scene of the crime" year after year, for our annual summer camping trips.
I have no doubt now that sleeping in a tent among the beasts and their ticks is connected to the illness I came home with, and not surprisingly, when I realized something was wrong, My HMO (which I will not name, but is the most restrictive HMO in the country) diagnosed me with "fibromyalgia".
I was instantly incredulous when they diagnosed me with this new ailment that is diagnosed in a "test" that takes five minutes of a doctor's time, costs nothing, has no known cause, and the treatment is palliative care.
I also knew that I was absolutely powerless. My HMO owns everything. They founded the HMO, built the hospitals, clinics, and pharmacies, and employ all of the doctors. I decided to put it out of my mind and push forward as well as I could, with as little medication as possible.
I only recently realized, that the illness I've fought forward with for all these years was actually Lyme, and the only thing that got me diagnosed was many years later, the two NEW ticks. Don't I have all the luck?
This summer, when I was outdoors for ten minutes (while visiting Missouri), and picked up the two Lyme positive ticks, I got my first clue what I'd really been dealing with was Lyme. By this time, my "fibromyalgia", had progressed to severe degenerative disc disease and a stenosis in my cervical spine. I was disabled from my job in November of 2006, and have been slowly losing my ability to walk for any length of time, even inside my own home.
Here's how and why I ended up outdoors anyway:
SO....On top of the first infection, in May of this year, I piled on the Lyme load of the two NEW ticks! Okay, it creeps me out, but I have since wondered if the two ticks I found were the only ones. Here's why I'm so convinced that there has to be a much bigger Lyme disease problem in the U.S. than anyone is admitting or realizes:
For my second exposure, I was in Missouri, a supposedly non-endemic state, and outdoors for a max of 10 minutes when I picked up the two infected ticks.
We were visiting my cousin and his children, who just had gotten a new (not terribly trained) horse. Adding to the problem was that he was letting it graze his 70 acre property, right up to the house. His home and the he horse were beautiful, and this would have been charming, if it didn't bring ticks ever closer to humans. I watched just outside the window, as the kids tried to corner the horse to ride it. This is about us unwise as it sounds.
I scrambled out to intervene. Until then, my eleven year old daughter's experience with horses was limited to the highly trained ones used by her riding teacher & I feared she'd think she knew how to handle him. Those are circle ponies compared to the beast straining to break free as they held the reigns! Knowing we were hours from help if she did get hurt in this remote place, I rushed right out there in my shorts and sandals. I was so relieved when the horse broke from my grasp, and galloped back into the woods before they could gather up the saddle, etc. Disaster averted...or so I thought.
By an amazing coincidence, I had scheduled this trip to end the very night before a procedure to have steroids injected into my cervical spine. From Mountain Grove, MO, we headed up to a hotel in St. Louis. I was driving home from St. Louis very early in the morning when I looked down and saw the first tick. This is how I knew exactly how long it had been there.
I knew very little about Lyme disease, but felt my adrenaline surge at what might be coursing through my veins at that very moment, and as you know, the journey began.
I kept hoping that the dot on my leg would turn out to be anything else, so as soon as I got home, I used my macro zoom lens to photograph it and see "What is this dot on my leg?" I can't tell you how happy I am to have a photo now that I know how hard it is to convince a doctor we have Lyme disease and get help.
Not knowing how to remove a tick (had never even seen one), and thinking a team of doctors would know what to do, I just headed off to the surgery center with it in my ankle.
In retrospect, this is almost funny, and yet it's not. None of them knew knew as much as I learned in the first month after it happened to me. I realized the level of ignorance when the nurse who'd started my IV, jumped back two feet and said, "Will he get me?". I told her, "No. He's very content where he is."
My husband heard the anesthesiologist outside my room, say to my surgeon, "There's no bulls eye rash. There's nothing to worry about." while the tick was still embedded. Could he really be that ignorant? If not, he would have been that greedy, to think that missing out on the payment for a day's treatment was a bigger concern. Scary thought.
Since the procedure was to involve a spinal puncture and an injection of steroids, I'm eternally thankful for my doctor deciding in the face of pressure, that it would be safer to wait and make sure I'd not contracted an infection from the tick. I now know that steroids given to a Lyme disease patient (see LymeNet) will cause permanent damage, or worse. My doctor sent me to urgent care instead. I had the deer tick removed in urgent care (mostly so it would be established in my medical record that I have had a confirmed exposure). Of course, my husband whimsically noted that all our insurance company will see is that they sent in an anesthesiologist, and started an IV, and then removed a tiny deer tick!
But, this Urgent Care doctor, though he was kind and genuinely seemed to care about what he was doing, made three mistakes:
*He removed it by grabbing the body & pulling straight out with tweezers, and then went back in to get the parts left behind.
*He did not offer antibiotics, and advised that I could seek treatment if I developed symptoms.
*It did not occur to him to check my other ankle.
I brought the tick home in a bottle. Injured, it wriggled its legs, but didn't crawl much. I'd been outdoors on Wednesday, May 27th. This all took place on Friday, May 29th. Then, the next day (Saturday), I was shaving and found a tick in my right ankle! Unable to remove it with tweezers (my Gawd-was this disgusting! ), I went online to learn more about how to remove it.
What's worse, I learned that ticks "PUKE" into you if you use oils or chemicals. Not wanting to touch it, I was disappointed to learn this. Online, I learned of the "Tick Twister" and called to make sure they had it, & went to PetCo with the tick in my ankle, to buy one. Of course, I had my tiny dog in my arms, so the cashier had to ask, "So, your dog has a tick?" and I had to admit, "No, the dog came home with none. It's in me."
Once I got home removed the tick and, I tapped the Tick Twister, on the edge of a tic tac box, dropping him inside. The tic tac box was just the right size, and it kept my sense of humor at a time when I needed it most. I was shocked at how fast it ran. Trying to photograph it, I got about a dozen blurry shots before getting one I could use.
I contacted ILADS (International Lyme And Associated Diseases), and got instructions as to how to get the ticks tested, and where to find a doctor willing to help. Unfortunately, before I even had my first Lyme disease appointment, my kidneys began to fail. My PCP was willing to give me five days of Levaquin based on my advancing UTI, with stage 3 renal failure (a GFR of 54). The pain was indescribable, but by the time my five days of Levaquin were out, I felt about 75% improved. I was certain we were dealing with an infection, yet when I begged my PCP for more Levaquin, I was told this was not an infection because my urine test came back negative for infection, and I then deteriorated over the next five days. By day five, my GFR was down to 52, and my Creatnine was 1.12, and climbing. I was in agony. I was hospitalized and given IV antibiotics, but no further treatment was offered after thee days of hospitalization.
Thank God my LLMD got me in immediately after my discharge and continued my antibiotics. After three more weeks of antibiotic therapy, my kidney function returned to normal, but any time I try to stop treatment or change antibiotics, the cycle repeats itself. I can never take NSAIDS again, and have to avoid any other medications that over tax the kidneys. I seem to have an aggressive and brittle type of infection.
I followed up with a nephrologist, who let me know he'd recently treated an Oak Park, IL woman who'd picked up Lyme while gardening in her back yard, and was very ill with acute renal failure. This doctor was so thorough that he spent enough time interviewing her to learn she'd had a tick embedded three weeks earlier. This case was featured in the Chicago Tribune, and it was noted that she will not even enter her yard without wearing a mosquito suit.
Then, on a day when I felt well enough, I took my daughter to a local gift shop, just blocks from my home. I just had to tell the owner what happened to me, and see what she thought. She was quick to let me know she'd recently pulled about a dozen ticks from her two sons after climbing a tree. She said, "My younger son developed Lyme disease. Does this mean he's immune now?"
I just knew I had to learn more and share as much as I could with others. I wondered if trees could pose a great danger to children now, and the answer is a resounding YES. Trees and leaf piles are very dangerous places where ticks/Lyme disease will be concentrated. There's a great need to inform the public, and do so in such a way as to make the information thorough, and still as brief as possible, and extremely easy to access. This is what inspired me to take what I've been learning and condense it into the "SEVEN LYME FACTS THAT COULD HAVE SAVED ME" video.
I call myself "Ticked Off Literally" because in the words of the late and wonderful Leslie Wermers, (one of the best activists that the Lyme Disease community has ever known), "I am angry that this disease is being ignored."
I am angry that my HMO doctors were willing to shrug their collective shoulders, and watch this happen to me. On a whole new level, I am angry that I spent my career as a licensed nurse in various Northern California psychiatric hospitals for children, where I hope to God, no one knew there was a possibility that we were dealing with infections, in what I now know is one of the nation's most endemic areas for Lyme disease. Lyme disease is highly likely to cause psychiatric symptoms in children, and with California being endemic, it shocked me that I never saw it addressed as a possibility.
At this point, I'm still very ill. My LLMD was brutally honest in his assessment of the situation. He stated that the Lyme infection in the late, disseminated stage, is "malignant and terminal". Of course there's reason to hope that I can survive and prevail, but I'm not yet even at the stage where we could begin to guess if I will.
I have been a brittle and difficult patient for my LLMD, with a static kidney infection that resurfaces every time we try to wean me from my UTI-specific antibiotic.
I need to also mention that as sick as I am, I'm also angry that statistically, my case doesn't count. I have had two negative ELISA tests since summer, and never developed a bulls-eye rash. As a matter of fact, neither bite ever turned into something as imposing as a typical mosquito bite.
Repeatedly, we have heard that the World Health Organizagion has ranked tAmerica as 37th worldwide in our quality of healh care. I don't agree. When we take into account the sheer wealth of this nation, and what we are capable of doing for our citizens, the way I see it, we are dead set last.
I consider this video to be a tribute of appreciation to those who've guided me this far, and an opportunity to pay forward what you've done for me ~ extending life-saving information as far as humanly possible. ~*~THANK~*~YOU!!!
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~7~ SEVEN LYME FACTS THAT COULD HAVE SAVED ME!!!!
