Welcome To The Club Utah

// April 30th, 2010 // Lyme Media, LymeBites Blog

Just an East coast disease?  I think that’s been proven wrong time and time again (ask all my sick friends in CA).  Utah, now the fight starts for you guys to even be recognized as having the disease in your state, let alone to get the help you need.  Check it out.

Lehi, Utah Argument Over Lyme Disease

2 Responses to “Welcome To The Club Utah”

  1. Deena Johnson says:

    Struggling with this right now too. Born an raised in Northern Utah – go figure!

  2. Deena, having trouble responding. I’ve written 3 replies not and I’m not adjusting well to Windows 8 (my former laptop broke and overheated, and then the overheating fan was blowing across the bed towards my leg (it was uploading files and running while I took a nap for a couple hours. I am on 24/7 pain control for severe neuropathy, so having this happen I didn’t feel any pain with it, ever actually, when I got up and went to bathroom and checked the upload I had a warm spot, by time I went to bathroom and came back I was getting ice to wrap around it as it turned into a huge blister. Instead of any financial claims, though it was a 9 month setback in my treatment, it wasn’t worth the time and $ to fight back for the time and $. They were great though in getting it replaced for me, and they also were nice enough to include an equivalent model but it was the week Windows 8 was coming out so they put it on here. And I still can’t figure it out….but when I take the time to write about my 3rd degree burn having nothing to do with tick borne illnesses, then it works fine!)

    What I was saying is when we began the partnership of LymeBites with another website in CA, it was a bunch of people with ID’s. And the creative consultant/grant/producer typee partner was also a certain way with her strengths and abilities that she put together a great group of people each with strenghts the others didn’t have. In 3 months those ideas blossomed into the first ever national Public Service Announcement Campaign. I remember Utah specifically (having lived there for 2 years myself!! What part are you in? I went to BYU Idaho when it was just Ricks College, and served a mission in the Provo mission, so my 2 years were spent from Lehi to St. George. Miss the people and the beauty of it all. But man, even after a year in Idaho it was shell shock! But when we had as many DVD’s of the PSA’s we could produce, and we had people in most of the states to act as liasions in the campaign, I still remember the first day we heard back after the packets begun going out to all the selected news stations and areas in the country. And the first state to respond and use the PSA’s was…you got it, Utah!!! What got me about that is that during the first year of my illness, there was an outbreak of lyme in Lehi. The state said first of all, there is no Lyme in Utah, but second of all, in investigating it we believe each of the infected people had been in areas out of town where they could have come in contact.

    They had 7 confirmed cases in one neighborhood, setting off a bit of panic. I live in the county right now with the most reported cases in NY, one of most endemic areas of the country, and I grew up here (lived north for 14 years where I had my career and home and life, before I had to pack it up to come home and thank God I have family that takes care of it’s own, and so when at 36 I had to choose between my apartment which I was soon going to not be able to afford, or to begin treatment with a Lyme Literate MD, I of course chose the option that gave me a shot at LIFE. But that required moving home. I find myself so very lucky. I am turning 40 this May, and the first signs of illness for me were in 1978 when I was hospitalized across the river, in the same hospital I was born at and where my pediatrician was. I spent 5 days in the hospital unable to walk with what they called a rare hip arthritis. They gave mom the name, a name that few Dr’s now recognize, but in researching it it appears to be the original class cases of Lyme. I probably had a tick bite and/or bullseye rash. But it was 4 years before Lyme, CT made enough noise to get attention. And it was then that Lyme disease went from an unknown bacterial infection to a named monster that over 30 years later is JUST beginning to be recognized for what it is.

    At 17 I was sick again, when my thryoid went completely haywire. I got a splinter in my finger that got infected. I had always had strange health problems that could never be explained (until 2009 when I was diagnosed), but Dr’s always said it will go away and it did, or they gave it a weird name, or told me I was allergic to my own bodie’s infections. And until 2009 I had blind faith in science, medicine and Dr’s. It wasn’t until I needed the medical system in working order, that I realized it was anything but “working”. I also spent hours after diagnosis searching the internet and finding nothing but angry people. I could not get a referral, I could not get Google results for Lyme disease. And there was not the Facebook Lyme community there is now. I remember the day after my first visit with a Lyme knowledgeable physician, I had met someone that same day who saw the same Dr and lived where the Dr was, which luckily is a nice 12 miles from mom’s home (instead of 70 miles from where I lived). Then at 20 on my mission I got sick again, 2 months of tests and being in bed the Mission President called me in and said the Dr’s had done all kinds of tests etc. and asked me if I had suffered depression, I said no…I had been depressed on certain days and certain situations, I was a dramatic teenager flung into the adult world of religious missionary. But I was not depressed, and it was almost a fight to prove that that was not an issue. (On a side note, I’m an only child of my mother, my father had children all over I imagine…but while on my mission she had the opportunity to to take an early retirement and then from there, she was called on a mission herself for one year. My mission ended one week before her, so I was one of the rare missionaries who gets to serve in 2 missions….(and I was spanish speaking in Utah, which there was no lack of in NYC where my mom was sent. (It was always odd how many people go to these exotic locations. The guy who lived next to me in the dorm at Ricks the first year was also called to the Utah mission…and his family moved 10 minutes from the border of our mission, and his nieces actually lived in one of our areas. He and i ended up being companions (and then roommates at college the next year) LOL. But we were both like “utah?” I had spent the last 6 years studying Spanish, and I was sent English speaking until there was a need for spanish speaking. And my mom, who was raised in the Catskill Mountains but spent much of her time in the Bronx with family (from italy, my grandparents settled in the mountains while other parts of the family stayed in or near the city.) So mom ended up serving in Long Island mostly, but I was living in Idaho spending my weekends iin Provo, and my mom was in NY, having spent much of her growing up years in NYC and then I got called to Utah and she got called to NY!!!

    But the only thing the Dr’s told me about my GI issues when I was sick on my mission was that I probably had parasites though I tested negative for most of them. Apparently the water conditions in Utah are not as regulated as they are in NY (for obvious reasons). In addition, I spent 2 years with Mexicans most of the time. Other spanish speakers also, but so many migrant workers. (In a cool twist of the story, when I got sick before I crashed and was unablet to do anything to help the cause, I was on he 5:00 news being interviewed, radio interview, a radio show with another Lymie, and the front page of the Sunday Memorial Day edition of the paper. Well that story was reprinted this year and on the front page of the Spanish edition of the paper, some smart person (this would have occurred to me in Utah, but not in NY as when I turned 18 and left, we didn’t have migrant workers in this area. But the area between here and the city is filled with wineries ad apple orchards, cherries and strawberrries. (Most pick your own, putting you at risk for getting lyme, and this was all in the county across the Hudson River, about 1 1/2 miles long. Dutchess County led the country in cases of Lyme disease for years, it was also the county that bordered along CT. So it made sense ticks could migrate from one point to the other. Yet the Infectious Disease Dr located here that most are sent to who is actually a very dangerous man with a God like ego, in the 90′s was quoted as calming the public concerns (they had given the vaccine to many New Yorkers, including those in my county. We are 100 miles north of Manhattan at the base of the Catskills, perfect area for a disease like Lyme. But people still say did you hike or hunt? And I remember how ignorant I was. How I had my life pulled out from under me and I was living in some of the worst areas in the country for Lyme and still couldn’t get the help I needed. A series of miracles kept me alive and kept me from going blind, until I was safely in the hands of a new integrative Dr with 30 years of experience with Lyme patients. So many people spent so much of their lives fighting for an answer. I spent a lifetime of weird wacky illnesses, but it wasn’t until I got worse and worse until the day I describe in “my story” on the website. But it was 5 weeks from that day until my primary Dr called and said I was positive for ACUTE LYME AND WOULD START TO FEEL BETTER IN A FEW DAYS. That was in June of 2009, it’s been a few days and I’m still waiting! LOL

    But one of the greatest pleasures of my life, has been becoming ill. For so many reasons that I will post soon, as I am slowly beginning to get enough f my mind bac that it takes twice as long to write now, but I can still do it. But remember when I got sick I was so scared. I was so ill that the surgeon for my eyes said I would have gone blind soon. (Once i went on antibiotics my vision improved 50%…and I was one step away from legally blind.) I was furious, how in the heck coudl i love 1 1/2 miles from one of the worse places in the country for Lyme and not know any of this? How is it that all those Dr’s were so rude to me, the final appt for my results and diagnosis was under 90 seconds long, when I said but what about my legs and the excruciating pain…and she stopped me, put her hand to my face and said I won’t discuss anything below your neck because anything wrong with you is in your head, and she walked out. 5 weeks earlier it was her PA who while doing my initial exam and consult kind of whispered to me “sounds like Lyme”. My Dr was from CA and not experienced with it, I had heard one horror story which I was sure was the exception. But at that time I began to meet more and more people as the invisible illness community on FB created, accepted and added on the Lyme Disease community (and Lyme disease no longer means just the Lyme infection when most speak of it, when I say chronic Lyme referring to myself, I include Bartonella and Babesia. And we know of 27 bacteria type infections and hundreds of viral ones. So who knows what else are in our bodies.) Again…how the hell did I not know this? Well I’ll tell you why. Ignorance. The Dr who is a danger in my county, happens to also be on a Lyme disease task force now (which they would not allow a Lyme treating physician to be a part of), but in the 90′s when discussing the fear after the vaccine fiasco and the rumors of all these cases and ways of transmission, he rolled his eyes at the concerned citizen and said to her when you see deer swimming across the Hudson you let me know. Or if they get the EZ Pass and can get across the toll bridge. And now this county has more reported cases. Logically he made no sense. But again, I was as ignorant as the medical community as well as my own community at that time even. I didn’t learn the truth about transmission and about ticks. Ticks have half the DNA as humans, making them so smart. And ticks are often blamed on deer which is very unfair since the tick life cycle begins with mice, which is where they get many of the diseases they harbor. Ticks cling to birds. So this Dr was saying that a bird could not fly across the river dropping a tick on this side. Or the hunter who returns home from another county with his kill on the car, a deer loaded with ticks. Those are the two most obvious things to me now….but when I first got sick and told my story, along with a few dozen then hundreds than thousands of people….attacks on us saying to be quiet, to keep quiet, not to “come out of the Lyme closet” because it was putting us at risk, and all our workwas just confusing people, and that they had organizations working on our concerns and taking care of them, and that they had have and did have everything under control for the last 30 years. I was 31 years old, with at least 26 years of illness and it clicked….no, they couldn’t have things under control. If thousands of people were correctly diagnosed and I had been busy watching South Park and missed this epidemic that would be one thing. So I told this woman that no, she had failed us. Not discounting their work at all, but if things were under control, maybe half the states would question Lyme in their state, but I lived in an area of the most cases in the country, so I should not have been left in ignorance. At the top of Generation X with the next ones behind me, it was clear to me that there were 3 generations of “kids” coming up behind these people with 30 years experience (and I give credit where it is due, I know these people did great things. But the whole story of Lyme and it’s co-infections, testing and even treatment has changed drastically in 30 years. And any attempt at education needed to be changed several times as information changed. But nothing had changed, 30 years later we were treating this intense disease once again as nothing more than a rare thing nobody got and everybody healed with. I rememeber specifically the states of NC, VA and Utah all saying “oops, I guess we do have Lyme here after all.” It sucks for those before us, but it’s hope for those behind us. And I was welcomed with open arms to all the different organizations and support groups for flming the stories of many of these victims. And in 3 years, I feel as if every purpose of being sick has been worth it if I played any rold in the way even a few people see Lyme. And the best is I am a single person with a big dream and a very ill body. So the fact that I am one of many tens of thousands all working for the same goal, but in our way, it makes me proud to stand by such amazing people in order to move forward with this awful disease. But I am so happy that the state you live in at least is recognizing it, even if they’re still ot accepting it in it’s full “glory”. But it’s progress!!! And with people like you who are willing to stand and say I am sick, I have Lyme disease…. and share your story, it will chane lives. My printed story was one in a long series of a local publication telling the truth about Lyme disease, and I’ve heard the series is nominated or up for a Pulitzer Prize (not sure how that works). But that is truly exciting to me, that any Lyme series would be visible enough and controversial enough to spark the public into action with this illness.

    I wish you health and happines, and thank you for taking the time to read my site. I apologize for the delay iin replying, but as you know most days we have little control over what our bodies will do. I am learning though that no day goes by without us having control of our minds, our outlook and our positivity. I pray for those blessings for you too in the journey!

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