What’s A Lyme Patient To Do When Fear Hits?
Fear is something that can strangle you. I know – It nearly strangled me.
By Alicia Cashman MS, Lyme patient and Advocate
April 17, 2020
Rewind about 10 years.
It’s a long, long tale, but the shortened version is that after helplessly watching my husband’s health spiral down a dark vortex which seemed bottomless, I was faced with a decision: either figure it out or sit idly by and watch the carnage. Being a (nice) bull-dog by nature, I chose the former and studied everything from chronic fatigue to stress to diet, hoping to pinpoint his unexplainable change in health.
Every single person facing fear has a similar choice – crumple or fight.
Things didn’t turn a corner until frankly I was complaining to my kids’ rifle coach about my husband’s lack of drive. The guy slept most of the day or sat on the couch playing Candy Crush in his robe. I mean – what gives?
After listening patiently, she looked directly in my eyes and said,
“This sounds like a page out of my book. I just got diagnosed with Lyme disease.”
BINGO! Immediately, I sensed I needed to look further into this. Everything she said made absolute sense.
I must depart from the narrative for a brief moment to tell you that THIS, right here, is how most people figure out they are infected – through other patients. As one patient wrote, “This is a do-it-yourself disease.” Truer words were never spoken. Mainstream medicine is still following a narrative that tick-borne illness is a harmless disease solved with a couple of weeks of antibiotics.
So I read, and I read, and I read some more. I actually contacted a local support group, which is unlike me, and boy am I glad I did. They quickly educated me on the continuing polarization within the medical community on tick-borne illness and how I would have to go out-side the box to get help. These people probably shaved 10 years of pain off of our lives simply by educating us so we could bypass fruitless ventures that would have cost us money, time, and self respect. You see, often medical professionals abuse Lyme patients. I could tell you stories….but I digress….
We found what I call a “Lyme friendly” doctor. This is a doctor who isn’t as knowledgable or educated on tick-borne illness as they need to be but at least they don’t abuse you. They listen, they believe, and they treat you the best they can – which is a far cry better than what’s happening to most patients. I got the first hope in years seeing my husband respond quickly to treatment. Unfortunately, he plateaued after about 10 weeks (this is common for those chronically infected and as it turns out research shows we typically are infected with numerous pathogens all requiring different medications). Also, as I started learning and talking with others – I started sending people to our doctor. She actually asked me to stop sending people to her. She was afraid. Two other Wisconsin doctors had come under fire for treating Lyme patients.
Well, this wasn’t going to work. We couldn’t continue seeing a doctor who was afraid to treat – plus there was that nasty plateau issue as well.
So like so many other patients, we had to find another doctor willing to treat us.
The challenge of finding reliable medical help for a disease that causes unbelievable suffering that the majority of doctors don’t even believe, causes untold FEAR. And, I must add, many patients go through this repeatedly when their doctors are held under the magnifying glass of state medical boards for treating outside the CDC’s unscientific treatment guidelines, which research has proven again and again and again do not work. Working inside the tick-borne illness world is like living in a pressure cooker all the time.
Confession: We called a number of offices and the one we chose was due to the kindness of the office staff! Ha! As I look back, I marvel at how inexperienced and emotional we were in our decision making. We were so desperate! Despite our inexperience and illogic, we treated with that doctor for over 5 years and still consider him our primary physician. He knows his stuff and we are blessed to work with him.
We had fear throughout this – but minimally yet because we still didn’t know much.
Fast forward a year or two while we were in treatment.
After reading yet more and finding out that many patients go on to struggle with life-long symptoms, the FEAR hit like a tidal wave. Plus, I started developing symptoms that became undeniable.
I was infected too!
What? Our lives might be forever derailed due to an arachnid the size of a singular piece of oatmeal? You have to be freaking kidding me. My mind began to race in 1,000 different directions simultaneously.
- are we ever going to be free from pain?
- we both need treatment – how can we afford this?
- some of the drugs have nasty side effects – what if they cause irreparable damage?
- how are we going to continue to homeschool 3 teenagers when I can’t focus or deal with any stress?
- how is my husband going to continue his at-home business if he sleeps all day?
- how am I going to cope when my family and friends are clueless and even antagonistic to me (you look fine to me!)?
- the depression caused by well meaning Christians that tell me I don’t have “faith” because I take antibiotics
- my husband and I are outside our minds and fight over trivial matters. How can our marriage survive this?
- we both have horrible insomnia which means we are zombies all day long. How can our family function in this new paradigm?
- it becomes obvious past trauma needs to be dealt with. Childhood memories flash before our eyes. How were we going to navigate uncharted waters to hopefully salvage our emotional and mental health but not kill each other in the process?
I could literally go on and on to infinity. The worries are endless and often have no immediate answers. This journey requires you to suspend reality and accept walking in the dark as the new norm.
I haven’t even mentioned treatment – which is an epic saga in and of itself. Briefly, it’s unlike anything you’ve ever gone through in your life. The pain is indescribable. Symptoms wax and wane making you question your own sanity. What works for one doesn’t work for another. It’s expensive and out of pocket for most since the CDC has continued to promote unscientific and unhelpful guidelines which most doctors follow like the Ten Commandments, despite a plethora of research showing many patients continue to have symptoms. Those chronically infected quickly discover new symptoms emerge – indicating other pathogen involvement which requires an entirely different tactic and medication. You are required to learn on the fly so you can partner with your practitioner for the best possible outcome. Many have to do this while raising families and working. To say this process is stressful and riddled with anxiety & fear is the understatement of the year.
On top of fear, my husband developed unexplained anxiety and rage. It would come and go like the wind – making it completely unpredictable and surprising. We later learned that Bartonella as well as Lyme can cause psychiatric issues and thankfully after treating Bartonella, these symptoms completely vanished. Psychological symptoms & mental health issues can be part and parcel with Lyme/MSIDS despite the complete ignorance of mainstream medicine on this important topic. Because this isn’t widely known – the first time it happens to you, you once again question your own sanity and if you are somehow inherently flawed. It’s only by talking with other patients you discover that psych stuff is actually quite common in the journey.
Being aware and developing coping mechanisms will make all the difference in the world.
For my husband, whenever the anxiety appeared he might have to just cancel appointments – it was that bad. It stopped life. He had to explain it to a few people when he was obviously visibly shaking before their eyes. If it occurred in public and I sensed it I would lean up against him, put my arm around him and physically support his body. I noticed his body quivering and much like a dog that gets frightened by thunder, I tried to emulate an “anxiety vest” by supporting him as much as I could physically. As soon as we were able, we exited stage right and beat it out of there. In a matter of minutes to an hour the anxiety would disappear for no explainable reason. POOF! Gone.
We are not alone with these fears and psychological issues. Thousands of patients navigate this jungle every single day.
Here’s what we learned:
- take it day by day. Don’t worry about tomorrow – it has enough worries of its own.
- learn as much as as possible to make intelligent decisions. This means studying and talking to other patients, doctors, and researchers.
- don’t get overwhelmed with the information. If it becomes too overwhelming, table it for day or two – get a better perspective and then come back to the subject at hand. Remind yourself that this is a marathon not a sprint.
- delegate more – ask for help. Time to admit you aren’t immortal or have a big “S” on your shirt.
- attempt to be patient with family and friends – educating them when possible on what this really is. I remind myself that I had negative, uninformed thoughts about my husband’s behavior before I understood how fatigue can render you useless. People are often just uninformed and ignorant of what this does. Walk away from negative relationships – or at least table them until you can handle them. (Best decision ever)
- work extra hard on your marriage. Talk a lot. Open up and allow each other to have fears, doubts, and struggles. Be best-friends. (I have to tell you that our marriage is stronger than its ever been and I believe this is due to what we’ve weathered together)
- don’t get depressed about being depressed. This was actually advice from a recovered Lyme patient which saved my hide many a day. When I felt depressed, I admitted it and told myself it was OK and that tomorrow would be better.
- embrace insomnia. It is your friend. Get up, quit whining and learn or be productive. I read and read and read. Much of what you read about treatment options and many other topics on this website are a direct result of sleepless nights. You have to find the silver linings. For you it might not be researching and reading – but whatever you choose it should encourage you and enlighten you – or completely bore you so you go back to sleep!
- have conversations – often with each other, with the kids, with those important to you. Talk to them. Let them talk to you. It should be a safe place where everyone can voice what they are feeling. These were tough, tough times and both my husband and I were not the best parents or spouses. Due to a brain infection we lashed out, couldn’t handle stress, said things we never should have, & did things we regretted. We apologized a lot! We asked the kids to pray for us and tried to be humble and open. (I have to tell you – this paid off hugely. We are a very close family to this day)
- work on past trauma. This is hard, hard work – and harder for some than others depending your back-story. There’s something about having a brain infection with loads of inflammation that makes dealing with past trauma even more important when you have tick-borne illness. I’m not saying this isn’t true for everyone, but from my experience, TBI patients can really struggle emotionally and need to address mental health issues. Seek professional help if needed but asked around and get a good referral. Unfortunately many patients are labeled and abused by ignorant yet well-meaning health professionals – and this includes psychiatry.
- detox. This may seem like a strange addition to this list but I found a direct link between how I felt physically and how I felt mentally. Since TBI patients suffer with herxheimer reactions, they have what doctors call a cytokine cascade which essentially means prolific, systemic inflammation. This inflammation can be everywhere and anywhere including the brain. If the brain is inflamed, it does crazy things and can cause crazy behavior. Dealing with inflammation can help mental issues immensely. For ideas on that, just type inflammation and detox into the search bar on this website. Make sure to discuss everything with your doctor. Chances are they have many ideas as well.
These are just some of the things we’ve struggled with and found help from. I’m sure I’m leaving plenty out.
I once heard an acronym for fear:
F-alse
E-xpectations
A-ppearing
R-eal
Regarding the current emotional environment surrounding a virus called COVID-19, it is important to understand that many decisions are being based upon fear, not science and logic.
Fear of course isn’t always a bad thing. Fear keeps you from running out into the middle of traffic. Fear keeps you from touching a hot stove. On the other hand, fear can also paralyze you and keep you from making logical and educated decisions. A healthy fear of COVID-19 for Lyme/MSIDS patients has merit because we have compromised immune systems and are typically more susceptible than healthy people to infections. But, are you doomed? Are you certain you will contract it? Do you know for a fact you will become severely sick? No. None of us can know this with any certainty. This is where unchecked external forces can impress false expectations upon you and make you believe you will become severely ill. This belief will then affect your thought process and your decision making. It’s a fact.
Mainstream media appears to be reading from the same accepted narrative that this is the most deadly virus in the world and will kill and maim everyone it comes in contact with.
In this vein, I recently went through another life-changing experience. Due to continued symptoms we decided to try the new drug being used on Lyme patients called disulfiram. It’s an old drug used for alcoholism but shows promise both in vitro and in case studies in killing borrelia, the causative agent of Lyme disease. I was one of the lucky ones who went into full psychosis due to what they believe is a genetic issue with dopamine. I ended up in the hospital with the worst toxic reaction to the drug on record. I went completely and utterly mad. The doctors didn’t educate my husband at all and he worried he’d never get his wife back. Talk about FEAR! I made sure to contact others and explain my reaction but it would be wrong of me to prohibit others from taking disulfiram due to my experience and even that of some others. That would be a decision based upon fear and would deprive others of potential cure or at least improvement in their plight.
Another example would be prohibiting people from going into the woods due to the fear of obtaining a tick bite. Research shows clearly that ticks are a huge problem and they love tall grass and wooded areas. Should we let fear keep people from enjoying nature due to the fact some will inevitably get bitten by ticks and may become infected?
And so it goes with COVID-19. Due to the fear of the experience of some, decisions are being made for the masses based upon the fear of severe infection for everyone. Both research and experience shows the majority of cases are relatively mild, and that we confer immunity when we move about freely and are exposed to the virus – often life-long immunity. It’s also known that wild viruses often become weaker with time.
Here’s what helps me when I’m gripped by fear:
- If you are afraid – admit it. Being honest with yourself is a great 1st step.
- Begin to learn all you can so you can be educated to make wise choices. This always means reading and studying around an issue. Read pros and cons. Read from those in the box and those outside the box. There’s nuggets of truth everywhere. In the end you will have to make the best decision you can based upon the totality of what you’ve learned. I’ve often found that when it comes to health, paradoxically, mainstream medicine is hopelessly in the dark. This is due to the well-known fact there’s an unholy alliance between Big Pharma and the Medical profession. Things get tainted when money is being exchanged. Once you learn doctors are getting kick-backs to advocate and do certain things and researchers fall pray to following an accepted narrative to obtain grant money, among other many other ugly things, you realize we are no longer in Kansas and things are often not what they seem.
- Talk to others: patients, doctors, and health professionals about it and get their take. I’ve learned the most through the years by listening to others and studying on my own.
- Study the human body and how it functions. When you do this, you learn that the body is marvelously designed and has its own innate way of fighting disease. There are those only push nature and there are those who only push man-made. My opinion is both are needed at different times for different reasons. Don’t be afraid to embrace both and don’t be so theoretically minded that you aren’t practical and vice versa. Again, nuggets of truth everywhere…..if you look and are open-minded.
- Study diet, nutrition, herbs, exercise, supplements – everything that can help you strengthen your body to do what it was designed to do. This is an endless pursuit and one you will never know in its entirety but if you learn something new, by the end of the year you will have learned 365 new things! Again, don’t allow yourself to get overwhelmed. Make this habit just another part of your life. This endeavor should not be a “have to,” but a “want to.” You are after all – the captain of your own ship and the more you know the easier it will be to navigate.
- Put what you learn into practice – knowing and doing are two different things and it takes both to turn your health around. Surround yourself with others that want to better themselves and encourage you. “As iron sharpens iron, so one man sharpens another.”
- You are what you think. The mind is a powerful tool that can help or harm you depending upon your thoughts and beliefs. I’m certainly no expert but I’ve found that learning all I can about the mind and how it can help me is much more productive than developing a helpless mentality dependent upon “experts” who may or may not have my best interest in mind.
- Give yourself and others life giving words. I remember my kids’ martial arts coach tell me one day, “Alicia, you have an indomitable spirit. Lyme doesn’t have anything on you.” You have to understand that I felt absolutely miserable at the time. My life and emotions dangled by a mere thread. But, I found myself meditating on what he said. The result was I began to smile. A load was beginning to lift off my back. My experience hadn’t changed but his words did what no medicine could achieve. He gave me HOPE! There’s a verse that states: “Thoughtless words can wound as deeply as any sword, but wisely spoken words can heal.” All I can tell you is that the words he spoke were like medicine to my soul and I desperately needed to hear them. I still chuckle when I think of it. They still put a spring in my step – years later.
And that is what this post is intended to do. I want to give you HOPE. You are not doomed – you are not helpless – you are not a victim with no power. Much of your future is in your hands. Some of it isn’t, but much of it is. You can’t always change external factors that get spear-chucked into your life but you can completely change how you think about and handle those things. You can continue to grow, develop, and become wiser, so that perhaps one day soon it will be your turn to utter life-saving words to another.
“You have an indomitable spirit. Lyme, COVID-19, cancer, you name it – doesn’t have a thing on you!”
The future is going to require level heads as I don’t believe COVID-19 or viruses in general will disappear. As a friend stated, “This virus may look back and wave at us,” meaning not disappear but remain in the environment as viruses tend to do (just look at chicken pox, EBV, herpes, and all the rest). I encourage you to learn all you can now for the future so you won’t fall prey to fear-based decisions because it’s a matter of civil liberties. Just as it would be wrong for me to prohibit others from using a potentially game-changing drug due to my experiences, so would it be wrong to prohibit the rest of the world from making a living and paying their bills due to fear of a virus. It’s really that simple.
For more: https://www.psychologytoday.com/us/blog/fearless-you/201311/fear-busting-formula-you-can-remember
https://www.awaken.com/2013/01/overcoming-f-e-a-r-false-evidence-appearing-real/
https://pathwaytohappiness.com/blog/definition-fear/
https://releasewellbeingcenter.com/blog/fear-false-expectations-appearing-real/
http://www.debilevine.com/?p=1134
