9 Things I Want the New York State Task Force on Tick-Borne Disease to Address

As a New York state resident who has been struggling with multiple tick-borne diseases for the last five and a half years, I have been forced to educate myself on ticks and the diseases they carry. I have been incredibly ill, and have lost my ability to be a productive and hardworking parent, have lost a part-time job due to my illness and desperately sought help from over 20 physicians. Meanwhile, I lost my ability to read, my short-term memory, and a lot of weight.

It is a long, sordid tale I have already sent to Committee Chair, Senator Sue Serino because I believe the stories of those of us struggling is a key factor in the issue of tick-borne disease, and especially so in finding measures to combat the problem. Instead of sharing my long story of personal struggling with you, I’d like to instead share some key changes I have learned would be greatly helpful in combatting this epidemic and helping the thousands like me struggling in New York.

 

Dear Sen. Serino,

I thank you for your attention to this matter and your concern for protecting the health of New York State residents. I am excited you are assembling a committee of experts and those struggling with these diseases, and I am hopeful it will bring needed change. But as those of us struggling the most are not able to serve on such a committee due to our poor health, I wanted to share my suggestions I have learned through my own battle with tick-borne disease in New York State, and my own research into the matter.

The CDC estimates there are at least 300,000 new cases of Lyme disease every year, with a vast majority of these cases coming from the northeastern United States. These states need to address these huge numbers. This is a crisis of epidemic proportions that just continues to grow. I’d like to outline the key points I myself dream of the committee addressing.

1. Physician Education

This is a key factor. I live in New York’s Hudson valley. An endemic area where physicians should know how to diagnose and treat these illnesses plaguing so many. Yet, when presenting to physicians and emergency rooms in my area with multiple symptoms of multiple tick-borne illnesses and reporting multiple bites, I was not properly diagnosed or treated for years. I was ignored and assured it couldn’t possibly be anything tick-borne causing my illness with no good reason why.

There are countless horror stories of people who presented with all the symptoms of a tick-borne disease like rocky mountain spotted fever or babesiosis but were not diagnosed quickly enough. Had treatment begun fast enough, they could have been helped; instead they died, or developed chronic illnesses that became difficult to treat because treatment wasn’t started fast enough. This shouldn’t happen in endemic areas where all heathcare providers are properly trained to diagnose and treat the illnesses.

Personally, I am a trained educator. Like so many other professionals, educators are required to undergo a certain amount of annual training and continuing education so they can keep up with changes to their field. Otherwise, they lose their licenses. Why are physicians in endemic states not being required to learn how to properly recognize and treat these infections or lose their licenses? Why are patients like myself forced to see more than 20 physicians before finding help for these illnesses?

2. Proper Statistics

How can people understand the constantly increasing dangers of these illnesses and the risks they face without accurate numbers? Too many of the tests for these pathogens are ineffective tools for diagnosing these illnesses and miss too many cases. Some of us, even meeting the tough CDC criteria to be considered positive for these infections, are still never counted in the numbers.

For instance, I tested positive for rocky mountain spotted fever by CDC standards on multiple blood tests, at the required increasing amounts, and cases are supposed to be reported by county of residence. However, my county still says there are zero cases of rocky mountain spotted fever. If they have missed mine, I am sure they have missed others as well. We need to do better so physicians know these diseases are in NY and so our residents can be properly aware of their risk and danger.

To that same end, we need to stop estimating cases of Lyme disease. The issue is too big to not count as accurately as possible. For example, a September 2016 report by the Zoonoses of Public Health states that “despite the mandatory nature of Lyme disease reporting in NYS, it is believed that only a fraction of the LD cases diagnosed annually are reported to public health authorities.” They did a study of surveillance data from three counties proving their assertion.

In December of 2016, the Poughkeepsie Journal investigated New York’s switch from counting cases to estimating them. They found that in my county, Ulster, estimating began in 2010, when Ulster fell to just 269 reported cases of Lyme. In 2009 before estimation began, Ulster county was ranked 10th nationally with 582 CDC accepted cases. Nearby Dutchess County was ranked first in the nation before estimation began there with an average of 1,145 cases per year between 2000 and 2008. In 2009 they began estimating and cases fell to just 413 that year. These estimated numbers are ineffective and paint a dangerously skewed picture of the risk in a given area.

3. Useful Public Awareness Campaigns

In my county, the public awareness campaigns warning people to be wary of ticks blame the victims of tick-borne disease with the slogan: “You have the power to prevent disease.” This is both insulting and inaccurate. Nobody has the power to prevent tick-borne disease because the ticks are everywhere and can transmit pathogens faster than we can find them and remove them.

It is no longer a matter of simply having to be careful when in the deep woods or thick brush. They are everywhere. In manicured lawns, on paved surfaces, in our homes. People can pick up ticks in their homes like I did, or even while traveling from their car to their home or walking in an urban area. It is time to make people aware of these facts. I contracted all of my tick-borne diseases when ticks bit me in my sleep in my own bed. The truth needs to be told. I know families who won’t even let their children play in the yard for fear of being bitten; meanwhile the ticks are sneaking into their homes while they aren’t looking and biting their families anyway.

Many of the measures we suggest people try are not useful. Have you ever watched a tick crawl on gravel? It doesn’t deter them at all. Yet, we tell people to protect themselves by forming a gravel moat around their property to keep ticks out. If you are considering such a measure, I ask you first to find a tick, take him to some gravel and watch him race across it. One thing I have noticed they do not like is sand. It dries them out and they hate that – they slow right down. Perhaps a sand moat would help, but not gravel. There are many more similar examples of this misinformation.

4. Acknowledge Effectiveness and Necessity of Biological Control Methods in Endemic Rural Areas

Because the population of ticks in each area is always being repopulated with fresh ticks thanks to other animals giving them rides, control measures need to be almost constant to be effective at keeping ticks out of your yard. Chemical methods are proven dangerous to the environment, and pose risks to our safety. Many botanical measures are not effective enough and can only control part of the population.

Biological control methods are very effective and yet seldom mentioned. This includes free range chickens, guinea hens and possibly quail. If they have daily access to the entire yard they will eat every single tick they can find (and many other pests too). At our home, we found them to eliminate every single tick we had. After being plagued in our sleep we saw absolutely no ticks for the three and a half years we had enough chickens. None. Then our town told us we aren’t allowed to have them and made us get rid of all but a few. Almost instantly, the ticks were back, and we were getting bitten again.

Chickens are proven to be voracious tick eaters. South African studies of chickens allowed to roam among tick-infested cattle showed a single chicken could eat up to 128 ticks in a three-hour period, with an average of 28.81 ticks consumed per chicken. Rural towns in endemic areas need to be prohibited from banning such effective control methods. I tried everything before chickens and nothing else was effective. This state needs to embrace chickens as a useful tool to combat ticks rather than legislate them out.

5. Educate Our Children

Our schools and public health officials need to create and implement statewide programs to teach children about ticks, how to be watchful, how to recognize them and what to do if they find them. Even very young children can be taught what is a safe bug and what is not so they can begin to protect themselves.

6. Awareness on the Ground

I live in a tourist mecca where thousands visit annually and many enjoy the outdoors. I would like to see warnings at all such places warning of the dangers, what to watch for and how they can protect themselves from ticks while still enjoying our beautiful environment.

7. Insurance Coverage

I want coverage for more than just one narrow set of guidelines that the National Guideline Clearinghouse no longer even lists (the flawed IDSA guidelines). And insurance companies are driving physicians’ choices for treatment when that should always be physician-driven, as they are the ones educated to do so.

8. Protect the Helpers

Physicians who are willing to help those of us with tick-borne disease should be celebrated for their amazing efforts in trying to help a huge population of very ill people rather than persecuted for their efforts. We need to work to protect them and support them in their efforts rather than persecute them.

9. Better Testing

I’ve run out of words, but no more are really needed. Testing is very unreliable and needs to be improved.

Again, as a New Yorker struggling with multiple tick-borne diseases, this is my “wish list” of things I hope the Senate Task Force might address. I thank the committee for your efforts from the bottom of my heart.

This post originally appeared on Ticks Are for the Birds.

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Thinkstock photo via ViktorCap.