watercolor painting of a woman with long, dark hair

Editor’s note: If you experience suicidal thoughts, the following post could be potentially triggering. You can contact the Crisis Text Line by texting “START” to 741-741.

September 10-16, 2017 is National Suicide Prevention Week. Suicide is a difficult topic for many to talk about, think about or even commit to reading about. For many, I am sure it was easier to pass over this article and move onto something else. It is one of those topics I myself struggle to write about. With any chronic illness, there may come a time when symptoms become overwhelming, when the judgments from those we love can weigh us down and with the large number of psychiatric manifestations that Lyme and co-infections can cause, some days can be significantly harder than the rest.

A recent article written by USA Today in July of 2017 mentions a report done by a New Jersey psychiatrist published in June of 2017. The article mentions how significant suicidal thoughts are among patients with Lyme disease and co-infections, and how this may provide information of unexplained suicides each year. The article states, “More than 44,000 people took their own lives in 2015, the most recent year for which data from the Centers for Disease Control and Prevention are available. The rate of 13.3 suicides per 100,000 people was the highest since 1986. The paper’s author, New Jersey-based psychiatrist Dr. Robert Bransfield, estimates that as many as 1,200 of those suicides – as well as more than 14,000 incidents of self-harm and 31,000 suicide attempts – may be attributed to Lyme and associated diseases each year.”

 

This statistic for Lyme-related deaths is vague, but there is reason for that. Many who have a Lyme diagnosis know it is a rather controversial disease to treat. With the lack of knowledge toward the disease, many people often go misdiagnosed and therefore do not even know that what they may have is, in fact, Lyme disease. Lyme disease is known as the “great imitator” and therefore many people are given a wrong diagnosis for their wide variety of symptoms. The longer the disease is left untreated, the more chronic it can become and the more difficult it may be to treat. This is why it is hard to have statistics for Lyme-related deaths and suicides. There is also the lack of proper testing, so often the symptoms are treated rather than the disease as a whole, which can harbor its own risks. It is a dense and complicated subject that can stir up many conflicting arguments within the medical community and within our own personal social circles.

Statistics are just a part of this equation though. The important message of this article is to help those out there who deal with the psychiatric manifestations, the judgments and the daily struggle of living life with a complex disease like Lyme. It can be heavy some days, and anyone can have dark questioning moments pass through their minds. When those moments do arise, it can be complicated to find someone to trust and to talk to. Quite often, Lyme patients are paying for treatments out of pocket and this does not leave much money left for proper psychiatric help. With the limited time in office visits with our doctors, there is not much time left to talk about how we are feeling emotionally, and our doctors are generally not trained psychiatrists, as much as we wish they were. With Lyme disease being largely unknown, others close to you may judge you and you may feel like there is no one left to talk to. Even if there is, the psychiatric disturbances the disease can cause can make you feel like there is no one out there who can understand you, no one who can listen to you and no one to reach out to, but there is. There always is.

Throughout treatment, when I was at my worst, I would simply do a Google search for the suicide prevention hotline. Even knowing that if the moment came when things got too dark, I would have someone to talk to made me feel comforted. I also took the time to remove anything bothersome or overwhelming in the Lyme community and on social media and found a good, small group of people with my disease to surround myself with. Setting boundaries, speaking up and letting others know when things were not comfortable for me became easier and easier.

The most important thing about getting to where I am today is that I told myself every day I was getting better, I am healthy and I will beat this disease. The more I told myself that, the easier it was to believe, and then it slowly began to become true. Those moments when the dark thoughts did creep in, I would be verbal about needing help, and although it was complicated to say, I learned to use those words.

If you do need help, know there is always someone who wants to help you, someone who will listen and someone to call or talk to. Sometimes this is not the people we want it to be, and help can come in the strangest forms, but you have to be willing to accept help when it does flow to you. I hope in reading this, it helps others with not only Lyme, but other chronic conditions know this is not a topic to be ashamed of, or something wrong – it is something that needs to be talked about, and the more we do, the more we can help others reach out.

If you or someone you know needs help, visit our suicide prevention resources page.

If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255, the Trevor Project at 1-866-488-7386 or text “START” to 741-741.

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Thinkstock photo via berdsigns.

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I’m Romilia, and I have a great idea.

I just graduated and got my Bachelor’s degree for International Business and Languages. And you know what? I wrote my thesis about the benefits of online coaching and support for women with Lyme disease. How cool is that?

 

This whole idea started due to my personal life. My mother was diagnosed with Lyme disease. This had such an unbelievable impact on her life, but on mine as well. A lot of things changed in our family life. I have learned you can’t take simple things for granted, but also that a positive mindset is important in the battle against Lyme disease.

My mother followed an online course. It was “Your Roadmap to Success and Happiness” from Dutch mindset coach Michael Pilarczyk. He said really interesting things about mindset and focus and how to live the best life you can, no matter what.

My mother was really sick, but from her bed or relaxing chair she was listening to him. She knew this was not an online course for chronically ill people, but for entrepreneurs. And even though she knew she couldn’t work at that moment, it helped her to set goals and accomplish them by simply listening to the videos, doing the meditations and writing things down. Some days she could only concentrate for five minutes and then fell asleep. But every day the online support helped her to keep going and find inspiration. It made her small world bigger and she was part of a positive community.

All those months, I was watching my mother from the sideline while I was busy studying and doing exams. I saw my mother, even when she was in bed, opening her computer. She inspired me and made me curious. I saw her enjoying the coaching program and making progress. In the meantime I was thinking about how much I admire her and how brave she was to stay positive even when she felt so bad. This made me dedicated to helping women with Lyme disease the best I can, and that is through online coaching.

And then came the moment I had to tell the professor of my university the subject for my thesis. I told him I had this great idea to write a business plan to start an online coaching business for women with Lyme disease. You can imagine all the question I had to answer. Why women? And why online coaching if you are really sick? You are too young to start this. Etc., etc., etc. All these comments, but that did not stop me or distract me from my personal mission. I am proud of how far I have come since then, but I want to grow the Woman & Lyme movement even more.

woman at college wearing her graduation cap

Well, this was six months ago. Now I have my Bachelor’s degree and more than 2,000 women with Lyme disease follow me on Instagram. I get fan mail every day. Those women are so grateful for my contribution to the Lyme community and I really want to help them. I know how tough it is to fight against Lyme disease. And my mother showed me the importance of online coaching and support.

One plus one makes two.

I am currently raising money to develop the Lyme Lady Lifestyle program in order to help every beautiful woman with Lyme.

Ronald Reagan once said, “You can’t help everyone, but everyone can help someone.”

I hope to be your “someone” and the women with Lyme disease are my “everyone.”

Together we are strong enough to help all these Lyme warriors keep fighting and lead a happy and positive life.

photo of romilia lammerts

Thank you, Mom, for showing me how to stay positive in a difficult and unexpected situation. Thank you for your positive mindset and thank you for introducing me to the online coaching world. Now I understand that everyone deserves a coach to gain improvement and live a happy life.

Visit the Woman & Lyme website to learn more or to donate to the Lyme Lady Lifestyle Coaching Program.

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The effects of chronic illness can be devastating not only for individuals, but for entire families. “Duck Dynasty” star Mary Kate Robertson, the wife of John Luke Robertson, shared the painful reality of her family’s decade-long battle with Lyme disease in a blog post that reveals just how physically and emotionally devastating chronic illness can be on a family.

Twenty-one-year-old college student Robertson, whose grandfather-in-law is “Duck Dynasty” patriarch Phil Robertson, wrote on her blog that her dad was diagnosed with Lyme disease after a family trip to Walt Disney World when she was in fourth grade. “I remember my parents just being glad to be given any diagnosis but none of us really knew what we were about to be in for,” Robertson wrote.

By the time she was in middle school, she, her mom and her sister had tested positive for Lyme disease as well. She said although being diagnosed didn’t really faze her at the time, she remembers fighting with her dad a lot, her parents arguing more and her sister not having the energy to play with her. Her parents searched all over for a doctor, and Robertson said one of the countless treatments her dad tried caused him to be legally blind for a time.

In high school, Robertson started feeling the affects of Lyme — namely, fatigue and depression.

It didn’t matter how much I slept I was tired. I started going to a doctor more regularly then and he told me it was most likely triggered by the stress of transferring schools. So basically stress is a trigger that makes me more tired — when I’m tired I can’t get things done that I need to get done which makes me stressed, which makes me more tired. What a wicked cycle. But I pushed through. Those last years two years of high school I struggled with some depression but didn’t owe it to Lyme. I just didn’t want to believe that Lyme was a big problem in my life. I thought if I ignored it, it would just go away.

 

Today, Robertson said she is healthy enough to be active and do things, but it always comes with a price. “Everything is harder. It can just leave you kind of bed-ridden,” she wrote. “You can have some good hours during the day, where everyone you know thinks you’re fine, but those other 20 hours are where you pay for those few good ones.”

The entire family has been to doctors all over the country though Robertson said no one in her family is much healthier. Lately, she said, there have been “a lot of tears.”

Everyone carries the weight of their own illness, but also the weight of each others’. It’s affected every aspect of life. My parents’ marriage and my own marriage. My dad had to quit working probably 10 years ago now. We wonder if my sister will be able to push through nursing school even though she has gotten straight A’s and honors in all she’s ever done. I’ve heard my dad ask to go on to heaven countless times. I feel like I’m living in a body that won’t cooperate with me…it won’t do its job.

Robertson said her faith helps her cope, and urged anyone who knows someone with a chronic illness to encourage them and let them know you love them. She also warned readers about the importance of taking Lyme disease seriously.

“I hope we’ll all be a little kinder to one another. I hope we’ll consider the fact that we don’t always know what others are going through. I hope we’ll choose to speak kind and uplifting words to everyone and less words that tear down,” Robertson wrote.

full heart❤️

A post shared by Mary Kate Robertson (@marykaterob) on

In recent months, Shania Twain, Alec Baldwin and Yolanda Hadid have also come forward to talk about the challenges they experienced due to Lyme disease. Make sure you know how to protect yourself from ticks; check out our guide to the summer’s Lyme outbreak.

You can read Robertson’s entire blog post on The Little Duck Wife.

Photo courtesy of Mary Kate Robertson’s Instagram


I didn’t choose a life of illness. I didn’t choose to have to fight my own body every day. I never thought I would have to cancel plans because I couldn’t lift my arms or because my chest felt like it was about to explode. I hadn’t planned on spending a large amount of my early 20s in doctors’
offices and planning out this week’s medications. I never saw myself as someone who would have to pass on an invite to the beach because I couldn’t get out of bed. None of these possibilities were on my radar, until I got sick.

The fact is, I can’t escape this life. Believe me, I’ve tried. I’ve tried to push myself beyond my limits so my friends aren’t affected and don’t have to miss the concert just because I’m sick. I’ve tried to skip on medications because I didn’t have them with me and I didn’t want to ask my friends to end our night early so I could go home to take them. I’ve tried to pretend I’m not sick so my friends don’t have to spend time worrying about me.

friends sitting on an airplane

The reality is though that my friends choose to be a part of my life with illness. They choose to miss out on plans when I’m too sick. They choose
to worry about me and ask me how I am. They choose to accompany me to my doctor appointments. Because of them, I have never felt alone. Even when I am physically by myself, I know I could call them anytime if I need anything or just want to talk. I know that even though it isn’t always fun, they are willing to stick by my side no matter what. I know that every day, they choose to live my life of illness with me. For that I am forever grateful.

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I knew chronic illness was going to alter the course of my life. I knew I would have to go to countless doctors to find out what’s wrong with me only to hear, “There’s nothing wrong with you,” and end up feeling like a frustrated fool. I knew I would have an at home pharmacy that would rival the drug store’s nearby. I knew there would be many days I would not even be able to leave the house and showering would seem like the ultimate feat to accomplish. The one thing no one told me is one of the saddest changes of all, losing friends.

Over the course of the last year and a half, I have lost the majority of my friends. It started with having to cancel on several dinner and get-togethers because I was too dizzy to drive or in too much pain to walk. After a little while, I stopped making plans because I had to cancel so many times. When I was feeling so horrible, the last thing I wanted to do was even talk on the phone, so that fell by the wayside too. Before I knew it, I was living in a tiny, lonely bubble feeling like a shell of my former self.

Chronic illnesses, in my case chronic Lyme disease and Babesia, are not the flowers and casseroles type of diseases. No one came by to drop off dinner because I was too sick to cook, or dropped off flowers to brighten my day. No one sent me get well cards. No one even came by really much at all. This is not a sob story because I didn’t need all of those things, but this type of illness is just different. When my former rheumatologist inferred that “it was all in my head” and that I was acting sick for attention, I thought, “Why would I do that?” The pain and symptoms were real but I was getting no extra attention, so what would I have had to gain?

Some friends completely stopped reaching out and it felt like they didn’t care. It was, and still is, extremely hurtful and hard to think about. I don’t put the blame on anyone else but that does not lessen the hurt. However, with all the loss and sadness, also came newfound realizations. I found out who my true friends were. I found out who kept reaching out to me even after I started to close myself off. The friends that texted me everyday knowing talking on the phone was too exhausting. The friends who drove four hours to see me because I couldn’t make the drive to see them as I had planned. The friends who were emailing articles they had found about treatments that could possible help me. The friends who cared and let me know at a time I really just needed support.

All of these feelings are flowing back up as my birthday is approaching next week. For my 30th birthday, I had 50 friends come to a party for me in San Francisco and it was an amazing party that I will never forget. For my 33rd birthday next week, I have chosen not to plan anything. The wounds of the loss are still fresh and I have no desire to invite anyone to a get together. I’m sure I will eat a favorite meal with my family and they will make it special. I will spend time with those closest to me who remained at my side, which is what I need right now.

I have been struggling the past couple weeks with all this hurt, but then I am reminded of the people in my life who have surprised me in awesome ways, and I am thankful. I’m thankful for a new, beautiful friend at my Weight Watchers meeting that brought me early birthday flowers on Tuesday. She obviously pays great attention and brought me a gorgeous bouquet. Along with them she shared insightful, kind words about my success in pushing through Lyme and working on moving towards better health. It was one of the most thoughtful things people has done for me and nearly brought me to tears. It was just what my heart needed – a reminder that people do in fact care.

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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.

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