Dear Senator and Senate Task Force Members,
As a New Yorker who has been suffering with tick borne diseases for several years, I can’t possibly thank you enough for all of your hard work trying to combat the tick-borne-disease problem in New York State. I sincerely wish I could attend the hearing on Tuesday, and join those with Lyme in calling for much needed change; However, my health keeps me from doing so at this time, and I will be unable to attend.
Instead, I am sending my story to you in the hopes that something good can come from the great suffering I have experience the last 5 years, and that something I share may help the committee combat these illnesses more effectively. I have emailed this to Senator Serino and have submitted a few more places for publication as well.
I am 41 year old mom of 3 who has lived in New York my entire life. In 2010, I moved 10 minutes from where I had spent most of my life in Ulster County to a beautiful home in the foothills of Minnewaska State Park, where I had always wanted to live and raise my children. My entire life I had spent a lot of time outdoors and had taught my children to do the same. We were aware of the dangers of ticks and had always been careful to follow the advice of vigilantly checking for them whenever we were in the woods. Our vigilance kept us safe and free of tick borne disease until we moved here. Little did we know our lovely new home in the woods was in fact a perfect setting for massive numbers of ticks, and that all of the prevention measures we had ever heard of would not be able to save us.
We always checked ourselves for ticks after working or playing in the yard, walking in the woods, or spending time outdoors. Our pets wore preventative medicines from the vet and we checked them thoroughly for ticks when they returned to the house. We also did tick checks every morning and every evening before bed. Yet we began to find ticks on us at every turn. Even when we didn’t go outdoors, we found ticks. We started removing prime tick habitats like barberry bushes and evergreen shrubbery, we kept the lawn well mowed, we applied various products like diatamaceous earth and other botanical products, yet the ticks continued to bite us. Luckily, they seemed to prefer me for some reason and bit me more often than my children. I tried to be vigilant in finding and removing them all, but that proved impossible. I could go to bed at night and not have any ticks on me. Yet when I awoke in the morning and searched again, I would find ticks stuck to my skin, sucking my blood. I removed them promptly and hoped that I was finding them quickly enough to prevent disease.
In December of 2011, a little more than a year after we had moved and began to have this terrible tick problem, I suddenly became very ill. I had a fever, severe nausea, pain and weakness in all of my muscles and joints, a headache worse than any migraine I had ever suffered, chills and sweats, and a terrible stiff neck. I couldn’t even hold down water, and could barely crawl across the floor from my bed to the adjacent bathroom. The pain was almost unbearable. My physician had recently left his practice and I hadn’t found a new one, so I went to urgent care after two days of this illness that was worse than anything I had experienced previously. They were stumped, and apologetically sent me home after examining me and doing some bloodwork. The next day they called and said my white cell count was very high and I needed to go to the nearest ER right away. soo we went to the ER. I reported all of my symptoms, as well as the many tick bites I had in the last year and a half. They kept telling me I did not have a tick-borne disease. Eventually, they diagnosed me with a bladder infection due to my high white blood cells. I was given an antibiotic for the infection and told to follow up with my doctor. I made the follow up appointment with a new physician. He looked at all my paperwork, heard my symptoms, my history of tick bites, and said he agreed with the ER’s diagnosis and treatment and that I would feel better after the antibiotics. So, I went home and tried to take them and go on with my life. My health continued to decline over the next couple of weeks and I began to experience trouble with cognition and thinking. Just a few short weeks after I had been too sick to get out of my bed, I graduated from SUNY New Paltz Magna Cum Laude with a degree in Early Childhood Education. I was excited to be a certified NYS teacher. Instead my health kept declining.
I returned to the new physician. This time, his diagnosis was that I was suffering from allergies and needed a steroidal nasal spray which did nothing for any of my symptoms. This began a search for a physician who would listen to me that something was terribly wrong. My condition deteriorated. I continued to have high white blood cells and platelet counts, multiple vitamin deficiencies, and more and more symptoms. I couldn’t keep down food, and lost over 8o pounds in less than a year. I had trouble finding words when speaking. Once an avid reader, I could no longer read as the words would swim off the page and I couldn’t follow the story. I forgot how to perform routine tasks at work, and some days couldn’t even remember how to get there. Given the opportunity, I would sleep for entire days at a time and still be exhausted. The pain all over my body was excruciating, and never ending, as was the nausea and the headaches. I have excellent health insurance through my husband’s union employment. I thought I would find the right specialist, and they would know how to fix whatever was wrong so I could get back to living my life again. Instead, I saw over 20 different physicians over the first 3 years of my illness and found no diagnosis that fit my symptoms or responded to any prescribed treatment. I was diagnosed with various vitamin-deficiencies, chronic fatigue syndrome, and fibromyalgia. I tried medication after medication and just continued to decline. The doctors all continued to deny tick borne illness, despite my history of multiple tick bites and residence in an endemic area.
Eventually, I was bit by another tick. This time I developed an Erythmya Migrans Rash, and was given doxycycline. I also finally began to test positive for Lyme disease by Elissa and Western Blot. I went through two rounds of doxycycline yet my symptoms were no better, in fact they were worse. The pain and tingling had spread to the point I could barely hold a glass in my weak hands and I had constant tremors in my fingers and toes. My general practitioner did not know what to do for me, and suggested I go to see someone in an academic setting, as they would be more likely to help. At Infectious disease at Albany Medical Center, I again tested positive for Lyme disease, Anaplasmosis, and Rocky Mountain Spotted fever. As well as a reactivation of the Epstein Barr Virus. Yet, the doctor stated that those things I tested positive for couldn’t be making me ill as I had already had doxycycline so therefore they were treated, cleared, and not the cause of my illness. I was sent to neurology for an MS workup as my symptoms now seemed very much like MS. After man trips to Albany and many expensive tests that my insurance company paid for, the neurologist determined I did not have MS but neurological Lyme disease and should return to infectious disease for treatment. The infectious disease doctor reiterated that because I had doxycycline that the tick borne illnesses couldn’t be my problem. He didn’t know what was, but prescribed Lyrica and sent me on my way.
Unfortunately, there is now a vast body of research showing that Lyme can and does persist in up to 50% of the patients. The old idea that Lyme was hard to get, and easy to treat, has been proven wrong over and over. Still, Doctors, in areas where they should know what to look for and how to treat (like mine) missed my condition from the very beginning and then continued to ignore it while I just got sicker and sicker.
I sincerely hope that one of the issues addressed by the committee will be the lack of Physician understanding on how to diagnose and treat tick borne illness properly from the beginning. If they had treated me properly when I first became ill, these infections would not have had a chance to become chronic. I think that physicians should be required to constantly update their educational knowledge, just as those of us in an education field like mine are required to do to keep our credentials. Mainstream physicians should be trained to properly recognize, diagnose, and treat tick borne infections before they become chronic and out of control.
After the Lyrica failed to help, I felt I had run out of options where I could seek help in mainstream medicine with my insurance. I had lost my second job due to too much missed work. Feeding my family was becoming more and more difficult. My relatives agreed to help my pay for a Lyme literate physician. He diagnosed me with neurological lyme, Anaplasmosis, rocky mountain spotted fever, and additionally diagnosed me with babesia and bartonella through a clinical diagnosis based on my symptoms and response to proper treatment. I don’t think any measures that do not include requiring doctors to treat us and insurance companies to pay for those treatments will be effective in stopping the spread of these illnesses, as too many people become chronic and forced to remain ill due to lack of access to care. When I first went to the Lyme specialist, I had had high platelets and white blood cells for over 3 ½ years. I had a constant fever, had been waking every morning for years soaked in sweat, had horribly low blood pressure, constant nausea and stomach pain, joint and muscle and bone pain, severe headaches, and many cognitive symptoms. I could still walk, but only very slowly and in extreme pain. He began treating my Lyme disease and my babesia with various combinations of oral antibiotics. It helped but did not cure any of my symptoms. Then after 5 months of oral meds I got a PICC line in my arm and did daily infusions of IV Rocephin for my neuro lyme and oral atavaquone for babesia. Some of the worst symptoms improved. After about 5 months, my white cell counts and platelets actually went normal for the first time in almost 5 years. The tremors disappeared, and my brain became less foggy. But many stubborn symptoms still remained. When I had been on IV antibiotics for 7 months, my blood sugar suddenly spiked and wouldn’t come down. The IV antibiotics had to be stopped and the line pulled. The Lyme Literate Physician was not sure what else to do for me after that, and I couldn’t afford to keep paying the exorbitant fees. I continue to be horribly ill, and in fact, the symptoms that had improved while on IV medicine are now returning. My white blood cell and platelet counts increased again when the Rocephin was stopped. Now I’m struggling to find a physician who can help me, as not many know what to do with patients like me. Again, access to adequate care is a big problem for Lyme patients here in New York. This is just a shortened version of a very long saga, I can provide many more details if needed.
In addition to the illness itself I have struggled with for the last 5 ½ years, I also had to find a way to deal with all of the ticks that kept finding their way into our home. As I stated previously, we had moved into prime tick habitat. My neighborhood is very rural, with small tracts of land cut out of the surrounding endless forest land. For instance a 2003 report by the University of Michigan found that “In patches less than 5 acres, the risk of human exposure to Lyme disease was almost 5 times greater than in larger forested areas.” The surrounding woods is also heavily made up of habitat shown to promote ticks, including locust trees and barberry bushes. I’ve removed all of those from my property, but can’t remove them from surrounding wooded lots where they abound. Living so close to the 22, 275 acre Minnewaska State Park, wildlife abounds here and there is a constant stream of deer, foxes, black bears, wild turkeys, mice, other rodents, and wild birds all carrying ticks all around the neighborhood, dropping them everywhere they go.
In the Spring of 2014, very ill, unable to find proper treatment, and still being plagued by ticks, I decided to get chickens. We didn’t get guinea hens as we find them to be very loud. The preschool where I worked hatched 6 chicks and in June of 2014, I brought them home, and converted a shed to a chicken coop. We quickly learned that they were indeed voracious eaters of ticks but that the 6 young birds couldn’t keep up with all the ticks on our acre and a half. We expanded, and our daughters began raising and showing chickens for 4H as well. Once we had enough chickens free ranging in the yard, we found that every single tick disappeared. And for the next 3 years, I never saw a tick at my home, and none of my children or myself were bitten. It was amazingly freeing to feel safe within our own home and yard again after several years of feeling unsafe because of all the ticks. However, living so close to a preserve, the local predators quickly showed that they thought chickens were a great snack. We learned we needed to constantly keep breeding our chickens or the predators would reduce our population too low and we would start finding ticks again. We started raising heritage breeds that were historically native to New York but now endangered. A year after we first got chickens, we also got some garden ducks to eat the pests in our garden and the mosquitos as we had found green pest control to be very effective. In June of 2015 we adopted 3 goslings. We were desperate to find a way to protect our free ranging tick eating chickens while they were busy patrolling the yard and eradicating the ticks. We heard geese were good protectors of flocks and particularly good at deterring foxes. It turned out, getting the geese would prove to be very effective at deterring foxes. It also caused a neighbor to complain to our town about our birds for the first time in the 18 months we had owned chickens.
In November or 2016, we were visited by a building inspector, and informed that the zoning laws in our rural town did not allow us to own a single bird. We could own a pig or a cow but not a single chicken, duck, or goose. We explained we had chickens to protect us from the many ticks, and that they were necessary. We visited all of our neighbors until we found our single unhappy neighbor. They didn’t dislike anything expected. They had an issue with the sound the geese made when they honked. (yet our town is named after the Indian word for goose, and it is the school’s mascot, as they are a native species) They said the noise interrupted them when they wanted to entertain on their deck. We assured them we didn’t want to inconvenience anyone and gave them our number. We said if they called us, we would put the geese and roosters in the garage for the day so they wouldn’t hear a sound. We hoped we had fixed the problem. We didn’t hear anything for almost a year. In May of 2016 our landlord received a letter from the Town saying our birds were illegal and we had to get rid of them. I obtained a letter from my physician explaining that I was being treated for many tick borne diseases and that I had not been bitten since acquiring chickens and therefore needed them for my health. I brought this letter and all of my positive tests for tick borne disease to my Town Supervisor’s office and explain why I needed my chickens. He promised me that they weren’t going to take away my birds. He said as long as we didn’t get any more birds, they would work on changing the law so I could keep the birds, and I should return home and not worry.
I listened to that advice. We complied with not getting any more birds. In fact, we rehomed the loudest of our three geese, rehomed some chickens, reduced our roosters to just two. For the next year I worked on treating my infections and we didn’t hear anything else about the chickens.
Suddenly, one terrible morning in April of 2017, the Town Supervisor and Building Inspector knocked on the door. It had been almost a year since I was promised as long as I didn’t get more things would be okay. Instead, they were now standing on our doorstep telling us there had been another complaint, and we had to get rid of all but 15 hens. No geese, no ducks, no roosters. No more discussion. My landlord received a letter from the Building department saying we were continuing to disregard town law and the landlord would be taken to court if we did not comply in two weeks. We tearfully rehomed all of these birds we had been raising for years and reduced our flock to the required 15 hens only. In a matter of days we were seeing ticks again all over the place. Furthermore, roosters are very important to a free-range flock. They function as protectors of the flock, keeping the hens together and warning of predators. Our remaining 15 hens quickly began to be lost to the neighborhood foxes. Even hens that had been raised by my preschoolers at school and lived here for almost 4 years and survived every other predator attack were suddenly unable to fend for themselves without roosters to warn of danger. My son got bitten first. Then my husband, and then me. Then my daughter and then me again. Our home is once again a scary and frightening danger zone. And the only effective measure I had for protecting my family from the very real tick danger has been taken from me. My county has a campaign that says “only you can prevent tick borne disease.” But how can we prevent these diseases when even rural towns are legislating out effective tick-control measures like free-range chickens and guinea hens? How am I supposed to protect my family from the little blood suckers if I am not allowed to use the only effective measure I have found to combat them?
There aren’t any studies in the US on the efficacy of chickens eating ticks, but in other countries, where ticks often impact livestock, chickens have been studied quite thoroughly. For instance, in Kenya in 1991, researcher Hassan found that chickens allowed to scavenge among tick infested cattle could eat from 3 to 331 ticks in 30 minutes to an hour, with an average of 81 per chicken. And that chickens were natural predators of ticks. (references available). And in Pakistan, agricultural researcher Soomro states that “Biological control (i.e. chickens) of ticks is the most safe, effective and cheapest way and encouraged worldwide due to its safety.” Yet here I am in the middle of New York’s Hudson Valley in the middle of a gigantic forest in a very rural area, and I am being prohibited from keeping chickens to eat my ticks. According to the 2000 census bureau data, my town has a population of 12, 889 people and we are spread far and wide through the woods full of ticks. The population density is only 98.6 people per square mile, which leaves lots of woodland for ticks to thrive in before finding their way to my yard.
I believe that in states like mine where tick borne disease is a huge epidemic, it should be illegal for towns to legislate out tick eating chickens and guinea hens. It is the only way we have to effectively protect ourselves in this sort of prime habitat.
I hope that you will consider these important issues at the Public hearing on Lyme on Tuesday. And that the stories of those of us here in New York suffering with these terrible diseases will not be forgotten. We need to make major changes or we won’t be able to slow the tick’s progress.
For more info please feel free to ask me questions, or view my blog on these issues at www.ticksareforthebirds.com
Concerned New Yorker suffering with tick borne disease