Lyme Success Stories: Why They Happen and Why You'll Never Hear About Them

It was a little over two years ago, but I remember it as if it were only yesterday. After excitedly receiving my Lyme diagnosis, I went home and searched through every Lyme link that google spit back at me. I wanted to devour as much information as I possibly could, but as I went through site after site it suddenly began to dawn on me the harshness of my new reality. This would certainly be no quick fix. "People still get better though!" I thought to myself. I opened up my browser, and I began my next search. It was a simple search, that to my shock yielded little results. "Lyme Success Stories," would sit in my google search bar repeatedly for the next year. I was desperate to find stories that I could relate to, but I couldn't. I was angry, shocked, hopeless, I started to feel as if there was no way out of this. According to the internet, hardly anyone was recovering from this monster.

As time went on, friends put me into contact with others they knew who had made full recoveries from late-stage Lyme Disease.  Many were willing to talk and even had very uplifting words. When I asked if they spoke to other Lyme patients about their experiences, their voices took a deeper, somber tone. Some relayed to me that I was the first Lyme patient they ever lent advice to, though some had been in remission as long as 15-20 years. I was taken back by this. We're starving for hope, and they choose to look the other direction and pretend as if it didn't happen. I couldn't possibly wrap my head around the fact that they had ignored others afflicted with the same thing that had caused them so much heartache and pain. 

I promised myself that no matter what the circumstance, once I was better I would come back and share my story as much as possible with other Lyme patients.  However, as time passes and you experience the traumatic nature of not only the illness, but society's reaction to it, you start to step back. As I started doing better, I turned my back on the Lyme community. I didn't even utter the word Lyme to others for over a year and removed myself from all Lyme support groups. It was too much, I didn't want to go back and relive what had happened to me. I didn't want to just be this illness, I was tired of my entire self being consumed by just this one thing. My entire identity couldn't be wrapped around only this, I was more than just a Lyme patient. But I would receive calls or messages from people who had a loved one with Lyme begging for any typer of guidance. It brought me back to how scary those times were, how I was in dire need of hope or guidance and it made me realize that I need to be better, we all need to better.

I know many of you are sitting or have sat in the same chair I once was with your new diagnosis. I know many of you are very discouraged with the lack of people reflecting on their paths to wellness. Unfortunately, we don't have our own Lance Armstrong, and one isn't likely coming anytime soon. I will say this though, the odds are on your side that you will get better! I've been to a physician who treats Lyme and has recorded the success of all his patients. He saw a huge improvement with at least 85% of his patients, and a little over 50% of those were able to reach full remission. These results for the most part are typical for all good Lyme-Literate Doctors. With those success rates, there should be thousands of recovery stories littered all over Google and Facebook, there should be tons of memoirs about their recoveries as well, right? If you've searched the internet, or your local library, you likely know this isn't the case.

Many of us are told that their illness isn't real, even those closest to us may not even believe us or think we're at they very least being overdramatic. Not only are we fighting a monster in our body, we're fighting society's perception of that same monster as well. By the time many get well, they're so exhausted of having to explain their stories or symptoms that they just want to move on. Besides, no one took them seriously before, so why is anyone going to celebrate overcoming an illness they believed wasn't even legitimate. If you were to tell a person walking down the street, "Hey I beat Lyme!" their reaction would likely be a very sarcastic, "Good for you." The narrative of overcoming Lyme Disease isn't seen as heroic as it might be with other illnesses. One day when awareness and research catches up with reality, maybe it will be, but that's not how it is now. The majority of patients think of Lyme Disease as a nightmare they never want to look back on. When they reenter back into society as a healthy functioning citizen, they're most likely trying to recuperate finances lost from paying large medical bills, and making up for all the time they lost while recovering from Lyme.

Many have given years to the recovery and don't feel they're in a position to give any more time away. They need to get back to their loved ones, not to a medical community that treated them as poorly as humanly possible. 

I'm not saying any of this is right way to handle it, but it's the reality of the situation. However, I do feel we all need to make a conscious effort to give back and at least put our stories out there for others. If you have recovered from Lyme or know someone who has, put it out there! The hope that it creates for others is certainly worth the time it'll cost you to write it out. So make a promise to yourself, "When I am feeling better, the fight is not over. I still must help others so that no one has to experience what I had to." If you can make this commitment to yourself, the world will be a better place for it.

A Loved One Has Lyme Disease: What to Expect

        It may be a friend, a sibling, a child, even a parent, but if you're reading this, someone you deeply care for has Lyme Disease and you're trying to understand what this all means. It's surely a confusing time for everyone involved. Whether your loved one has been sick for years, or just a short time, your understanding of their situation and unwavering support will be crucial in their recovery. You may not realize it. You may not fully comprehend why someone you thought you knew so well may be behaving differently, but it doesn't mean their feelings for you have changed or they need you any less. When this is all behind the both of you, your relationship will be much stronger for what you've both endured, and for your ability to understand their struggle. But how do you even begin to understand what one is dealing with in terms of this illness? I'll do my best to help.

    Lyme Disease is difficult to deal with, one of the most difficult illnesses someone could be handed in today's medical society. There's a good chance that you were happy when you heard your loved one had been diagnosed with Lyme. They likely had some horrific diseases thrown at them as possible diagnoses before this. But be clear, this is not an easy illness. The person you cared about has just embarked on a very difficult journey, one that will take months, maybe even years. 

Let's get this out of the way right now. Lyme is misunderstood by everyone! Friends, family, even the medical community. To say the general knowledge of this illness is limited would be the understatement of the year. Lyme patients often lack the empathy of those closest to them. This disease doesn't incite the same type of reaction in people as hearing that someone they know has Cancer. You know, the big C word. Cancer is a horrendous disease, one that should have as much resources pumped into defeating it as possible. However, in many cases, Lyme Disease can be just as devastating as a cancer diagnosis. This is not an over exaggeration, this is clearly stating the truth. Please, if anything, acknowledge how scary this is for your loved one. Lyme is also different in everyone's body, so don't compare other patients stories with one another. If you know someone that got well in a few weeks, great for them. However, that doesn't mean that your loved one will have the same outcome. Be aware, that they will be on their own individual path to wellness that will be vastly different from many other patients.

First off, understand that your loved one is not lazy. I can't state this enough. Their inability to get out of bed isn't borne out of some type of depression. They are not leaving their bedroom more often than not because they are physically unable to. Lyme can present itself in many different ways, but the one universal symptom is the devastating fatigue. The illness attacks the mitochondria, which helps energize our bodies. When the mitochondria within our cells are damaged, as they are in Lyme, it creates an inability to produce high energy molecules. In those with Lyme, our mitochondria tend to be at about half of their normal capabilities, creating the chronic fatigue. The fatigue robs you of the ability to maintain almost any quality of life. Your mind may tell you to do things, but your body is physically unable to. It's hard to describe, but it is unlike anything I could've ever imagined experiencing. A vibrant, athletic, teenager can be transformed into someone that looks as if they belong in a hospice. The task of walking down the block could take your loved one the same amount of energy as it does for you to run five miles.

Second, your loved one is not crazy. This distinction manifests itself into two different parts, and I'll touch on them both. The medical community is extremely behind on its knowledge of this illness. It would take me a  short book to describe the reasons why, and then it still wouldn't be enough. Just realize, the research behind Lyme is in its infancy stage. Right now, there is a huge argument taking place within the medical community on whether late stage Lyme even exists (A main factor in why your loved one has a hard time finding a diagnosis). Due to this, those with the illness often feel alienated. They are routinely told they're healthy, when their clearly not. MS was once deemed the crazy person disease before the MRI was invented that allowed physicians to see lesions in the brain. We are now going through this same type of treatment, and after research catches up with Lyme, I'm sure it'll happen to patients with another disease. Since we're told we're healthy, some will be deemed as mentally ill, when their illness is very much physical. Your loved one isn't crazy, they have simply been mistreated by those within the medical community.

However, Lyme can effect some cognitively and emotionally. Depression is common due to simply being isolated from the world with this illness, but it does have the ability to alter the chemistry within one's brain. You may notice that your loved one may start exhibiting some odd behavior or may not be as sharp as they once were. Don't be alarmed, this is relatively normal, and will dissipate with proper treatment but it won't happen overnight. Be aware, if their behavior has changed, it truly isn't their fault. They may become harder to deal with, and may even seem like a different person. It is temporary. If they lash out at you, or do something odd, try not to let it get to you. You may even have to simply ignore these outbursts for awhile. If they seem to be dazed and out of it, don't make fun of them by pointing out how stupid they seem. This once again, isn't their fault and it's best left ignored. Eventually things will return to normal, and you'll have your loved one back and you may even laugh off some of the odd things that happen. Please, just be patient with them.

Third, your loved one's feelings haven't changed for you simply because you no longer hear from them. There are a number of factors why you may lose touch with this person, and it has nothing to do with their affection towards you. For many of us, we have to take a sabbatical from life while we recover, and it's painful. Sometimes, the painful part is watching those close to you move on with their lives while yours is stuck in neutral. I was always happy when one of my friends accomplished something great, but at times it did become hard to connect and relate when you were in bed all day. Your loved one may be in touch less because they simply don't know what to talk about anymore, your lives are much different now. Please feel free to share with them your life when you do talk, but don't list your latest personal achievements extensively, it will create a divide between you two. Also, ask about their illness, but try not to push the questions too hard. They'll open up when they're ready. If anything, when communicating, try to laugh and joke about past memories and reassure them that you'll be doing the same things once they're better. Also don't feel shy to leave a simple message that you're thinking of them. It may not seem like much, but it can really turn a bad day to a good one when someone isn't feeling well. Lastly, don't be afraid to contact them a few times in a row if they weren't the first one to initiate the conversation. You may have to do the heavy lifting in your relationship, and that's ok for now.

Lastly, we'll go through the process of treatment for your loved one. Something that you must understand is that this will get worse for them before it gets better. You may hear them mention going through a herxheimer reaction. You'll probably ask yourself, "What the hell is that?" When we kill the bacteria associated with Lyme Disease or its Co-Infections it releases toxins within our bodies. This toxic build up will have many of us feeling like we have a constant hangover or flu. Unfortunately, there's not much of a way around it. We simply have to tolerate it and push through. But since the disease is disabling on its own, this can do nothing more but pile onto the misery. After awhile they will start seeing improvements but it will rarely be quick or significant. This is a slow race to wellness that involves a lot of steps. They will be on a host of different medication, sometimes one can be taking up to 100 pills per day! Those pills may also carry along side effects that also have us feeling worse. No lyme patients will get better from the same treatment, we usually get better from trial and error. Our doctors will put us on different meds, see our reactions and continually switch them in and out as if it's an act of juggling, trying to discern the right protocol. Your loved one is going to hit a wall where progress won't be made for awhile, hang in there with them. This recovery will not be a straight hike up the mountain, there will be peaks and large valleys they must travel through to reach their desired destination.

If you went into this article thinking this illness would be a breeze, I hope you're coming out with a very different impression. Love and support will make the recovery process ten times easier, I'd even go as far to say its required for your love one to get well. If you're able to understand the seriousness of this illness while being there for them through the tears, the smiles, the confusion, you will be part of their treatment protocol to get well, you will be their medicine! I was recently diagnosed with Type 1 Diabetes, if my quality of life was hypothetically at 100, diabetes would take it to 99. Lyme, well Lyme can and has taken it from 100 to 0. Thats the significance of this insidious disease! So go out there, find your loved one, give them a hug, and let them know that you're there for them!

I Remember

At times, this illness is a blur, a span of nearly three years that feels as if it all happened within the blink of an eye. But at other times, the painful memories consume you. Those moments etched in your memory, likely forever, stretching out time. All of us were much different people before we were struck down with this invader, this alien that maneuvers itself and infiltrates every part of your being. It can leave you handicapped emotionally, mentally, and physically all at once. It will rob you of your soul, and for some, it becomes too much of a burden to even endure. Somehow many of us overcome it all. Many will say they fought it off with iron fists slamming into the enemy. An enemy that is invisible to everyone else, but yourself. I believe them, but I never really fought, I just merely hung on. Somehow I got here, three years later, and I wouldn't recognize the person I was back then. I'm not better, I'm not worse, I'm different. I will forever carry the memories of being at the edge. I will forever remember things that I simply don't want to remember. Maybe, I need to remember them. I don't know.

I remember the pain. I remember the precise moment the pain entered my life. I remember how it felt, it was like two men grabbing my intestines from both ends and twisting them repeatedly with all their strength, as if the end goal were to rip it all apart. It wasn't intermittent, it was constant, never a moment's rest. When it set in I told myself this was temporary. It lasted for two more years. 

I remember the fatigue. I remember suddenly feeling so tired that I collapsed out of my chair. It happened weeks after the stomach pain set in. I thought nothing could render your life more miserable than the pain that had become part of my normal existence, I was wrong. I remember nearly fainting while going for a jog, trying to understand the new state of my body. I remember a month later, the fatigue increasing to the point where my bed became the only place I would exist for that next year. I remember being too tired to even get out and make my own meals. The act of simply walking from my room to the kitchen had transformed from a normal task, to feeling like I was about climb a mountain.

I remember the deterioration. I remember the scale in my room. I remember the numbers dropping as if it were a countdown to something. 185, 180, 165, 150, 140, 130. I remember looking in the mirror and seeing an unfamiliar gray face staring back with its ribs protruding out of him. I remember asking how I got here, in such a short time. I remember looking up to a god I had never spoken to before, and simply asked, "Why?"

Right before I became ill at 185 Lbs.

At 145 Lbs only 9 months later. Still enduring grueling treatments.

 I remember the doctors. Each and every one. I remember when they initially thought I had HIV, then Chron's, then IBS, I could continue on, but the list wouldn't stop for some time. I remember after almost a year being told there was nothing it could be but cancer. Hodgkins Lymphoma. I remember the elation I felt with this prognosis. I also recall the shock on people's faces when they could see the excitement in mine at the prospect of cancer. I felt like I was dying, at least now there was a chance I would get better. Life is all relative, no one wants cancer, but when you're suffering immensely every day, and someone tells you theres a possible solution, you can't help but feel joy. I remember the bone marrow biopsy, the spinal tap, the exams. I remember the doctor coming in and saying it was negative. I remember the words, "Your body is shutting down, we dont know why. Sorry." I remember being handed anti-depressants to help me through my "tough" situation. I remember breaking down into tears.

I remember the Lyme Diagnosis. I remember somehow finding the energy to leap out of my seat and give her the biggest hug I've ever given anyone. I now remember the look on her face, the half smile that spoke to her happiness but also to her fear that I had no idea what I was in for. I remember her telling me weeks later that I would've been better off with HIV, that the medical community was too far behind on Lyme. I remember the fear that had disappeared weeks earlier, suddenly creeping back in. I remember not getting better. I remember feeling like I was back at square one. I remember being hopeless.

I remember the deaths. The people who were too young to die, those that were once in my life, that suddenly weren't. I remember feeling guilty. I remember feeling worthless, I wasn't a good friend, I wasn't as good of a person as any of them. I remember feeling it should've been me, not them. I remember the calls to 1-800-SUICIDE. I remember thinking once again, how did I get here. I remember wanting to end it all, I remember the plans, I remember it all. I remember straggling into my car with all the fatigue, plotting plans, but then simply driving off to admit myself into a psychiatric clinic. "Not yet," I told myself. I had to hang on just a little bit longer.

I remember sitting in the psychiatric ward. Sitting in teal scrubs beside a man repeatedly talking to himself. I remember another man across the room tatted head to toe on the phone discussing it was another drug charge and he assaulted someone. I remember the staff looking at me as if I were vastly inferior to them. I remember agreeing. I remember meeting with the psychiatrist on staff. I remember her eyes filled with empathy, "You dont belong here. You're physically ill, not mentally. They need to figure out whats wrong with you. I really wish I could help." I remember going home, and I remember the worry that ensued within my family.

I remember learning about the stigma behind Lyme Disease. I remember realizing that most doctors thought the illness I was given, didn't exist. I had been duped by quack doctors or I was faking it. I remember the aggression and rage that began to rise within. I remember not understanding, "How could they ignore this, how could they let people suffer like this?" I remember telling friends who were aspiring medical students about my situation and the empathy they felt. I remember after going to classes, some of those same medical students suddenly telling me I was wrong. I should be ok by now, and if I'm not then it's something else. I remember realizing this was a vicious cycle, this wasn't going to end anytime soon.

I remember going to a medical facility called Envita out of desperation. I remember the weird treatments that were making me better. I remember the relief I felt as there may be a way out of this. I remember not questioning that they didn't record anything, and the success rates they'd given me were clearly false. I remember ignoring how uncomfortable I felt when it seemed like the staff felt as if their methods were the best and untouchable, all due to some higher calling from God, and were sent on a mission to make us better. I remember the narcissism in the man who ran it, I remember getting worse after suddenly getting better. I remember pleading with my doctor to help me and him stating, "I don't know." I remember him telling me that I had a spell cast upon me while I was working in Africa and I needed to use the power of Jesus and also get an exorcism if I ever hoped to be well. I remember clenching a fist and a fire burning throughout my body as I was prepared to launch myself at the man I had entrusted my life to for six months. I remember somehow collecting myself and walking out. I remember feeling like it was all over.

I remember the family I met at Envita who was gracious enough to offer their home in Virginia to me and a doctor who'd help me get well. I remember flying out, wondering if it was all worth it, I had endured enough. I remember sitting in a hyperbaric oxygen chamber, and recovering faster than I ever thought possible. I remember hitting a wall in my recovery that I couldn't get past soon after. But I also remember feeling human again, I remember the thoughts of ending it all finally disappearing. 

I remember meeting my girlfriend. I remember the feeling I felt within. My heart raced, my eyes stayed fixed on her. I didn't know exactly what to say. I remember being extremely nervous. I remember the connection that ensued, the feelings that had risen in me that I had never experienced before. I remember questioning it. I remember feeling its too good to be true, I remember the confusion. I remember spending time with someone who knew what I was going through, someone who had experienced it herself. I remember not feeling alone for the first time in years, I remember falling in love.

I remember seeing her healthy, vibrant as ever. I remember the jumping jacks in the room, and the smiles that never seemed to fade away. I also remember feeling her pain. I remember watching her slowly get worse as she didn't have the finances to stay on the medications she needed. I remember screaming to myself, "Why isn't our care covered under medical insurance." I watched her lose part of herself. I watched as I also lost a part of myself. I watched her deterioration as she withered under the fists of this illness. I remember feeling I'd rather it be me, not her. I remember realizing what it's like to care about someone more than yourself.

I remember feeling what it's like to be close to wellness, but not there yet. I remember the PTSD that's followed this destruction, the type that I thought was only reserved for those in the armed forces. I remember still being scared, but knowing that I'm with a new doctor in New York who's pushed me past that wall I hit and that I'll feel wellness soon enough. I remember being hardened by Lyme to the point that the diagnosis of Type 1 Diabetes hardly bothered me. If I could endure Lyme, than Diabetes would pale in comparison.

I remember the vast amount of friendships I lost. I remember feeling out of touch with others my age. I remember feeling like I was 19 and 80 at the same time, though I'm 23. I hadn't matured much after the point I became ill, but I've also been through more than someone should realistically go through in an entire lifetime. I remember feeling like I want to help those with this insidious disease, but I'm also afraid that my identity will always be tied into that guy that was sick. I remember wanting to be more than just my illness.

I remember all this not even being the worse part of this experience.

I remember hearing hundreds, even thousands of Lyme stories ten times worse than mine.

I remember sitting here, right now at this very moment, thinking when will the pain and suffering inflicted to all those with this illness ever stop. I remember thinking, "Life isn't fair."