Apart from the Dysautonomia that I don't have (I have more ALS-like symptoms as you know) and the MCS that I have in a milder form, this post could be written by me...and I believe also by many chronically ill people...I cried when reading it because almost every word of it describes how I feel and gives the information I want to spread out! Please take some time to read it....
"It takes a village."
my doctor said, as my parents and I sat in front of him, my parents wide-eyed and worried, while I slumped in a chair next to them. My doctor had just listed the additional practitioners he'd like on board now that I had just been diagnosed with such a complicated case of late stage lyme disease. I'm sure he could see the dollar signs register in my Dad's eyes, and the wheels turning in my Mom's head, making her mental to-do list. He said, "In order to get a lyme patient well, it takes a village".
I still believe that today, two years later, but to an even greater extent. I do believe that a patient needs a small village of talented practitioners to get well, but I also believe that at the end of the day, if the patient doesn't have their own village of supportive, accepting, educated family and friends to come home to, the puzzle is incomplete. You just can't do this alone.
Unfortunately though, debilitating chronic illness is a recipe for isolation. Every so often you come across a gem or two that will be by your side, learning with you, helping you, and supporting you through your entire journey. A lot of the time though, when you're chronically sick, you're "out of sight, out of mind" because the nature of normal everyday life tends to swallow up those around you. Since chronic illness can be such a challenge to understand, you often also come across what I like to call either "the doubters" or the "me-tooers".
The doubters are the people who doubt the diagnoses and symptoms that you have, and every medical treatment you decide to try. They think that "a person can't possibly be this sick for this long". The conflicting information and controversy surrounding chronic lyme disease certainly doesn't help. The "me-tooers" are the people who do know you're sick, but think that for some reason, they experience the same symptoms that you do. I can't quite figure out the logic in this one, but part of me believes that they might think they're a bit tougher and can handle the average symptoms we're "both" having. What they fail to understand though is, they can't possibly have the same symptoms at the same magnitude, or else they'd have the disease too. I don't entirely blame anyone for this. Until you walk a mile in these disease filled shoes, you can't truly step inside of my world.
I'm very, very blessed to be living with two amazing, compassionate, understanding people who continue to educate themselves and open up their minds and hearts to what I'm going through. Not once have I ever heard them compare the normal aches and pains of daily life to what I'm going through, and they haven't doubted me or my doctors at any point in this battle. But, as I said, "it takes a village". A village can't function with just two people. Having a small support system can be isolating for the patient, but it's also exhausting for the team. I often wish I could write a letter to my closest friends and family members, almost to recruit them and help them to understand, just so I can feel less isolated and my team could feel like they had some back-up.
So, I sat down today to write a letter. I know in reality I'm not going to send it. I figured I'd write it anyway though, in light of lyme disease awareness month, so maybe someone else could use it. If another patient like myself showed it to their family or friends and it helped their "village" to understand them better, and helped them to feel less alone in their battle, then my mission is complete. Whether you have Lyme, Dysautonomia, Multiple Chemical Sensitivity, or are just chronically ill, please, feel free to send a link to this letter to anyone you wish, and use the letter however you find helpful. Maybe one day I'll be brave enough to use it to help myself too.
Dear Friends and Family,http://infectiousoptimism.blogspot.com/
In light of Lyme Disease Awareness Month, I've been encouraged to spread awareness about the disease and how it affects the lives of those infected with it. I thought the best place to start would be with you, since you're directly connected to a Late Stage Lyme Disease patient.
Late Stage Lyme Disease is a neurological disease, much like Multiple Sclerosis, Parkinsons, and ALS are. When a person is initially infected with the bacteria, the disease is not neurological in nature and is easily treated with a course of antibiotics, but if the infection goes unnoticed and is left untreated, the bacteria continues to replicate and spread throughout the body. The systemic bacteria is able to morph itself into a resistant form that can hide itself in places in the body that the immune system cannot easily penetrate, like the joints, eyes, and the brain. The patient then becomes a Late Stage Lyme Disease patient.
I know that this information is controversial, and if you do a google search on it, you are likely to come up with conflicting information. The disease itself devastates a Lyme patient's life, but the controversy surrounding the disease makes it that much harder. Understandably, it breeds doubt amongst other doctors, friends, and family members of a patient. I like to explain it this way though:
The way Lyme Disease is currently being handled is much like the way AIDs was handled when the AIDs epidemic first arose. Patients who were infected with HIV were doubted, because the infection was so rare, understudied, and controversial. The patients were denied treatment and made to feel as though they were crazy, and that it was all in their head, despite their obvious illness and failing bodies. One of the leading Lyme doctors on the East Coast was actually initially an HIV doctor, and diagnosed one of the first cases of AIDs in North Carolina. He stuck loyal to his HIV patients despite the controversy surrounding the disease. He now primarily treats Late Stage Lyme Patients. It is reported that unfortunately, Lyme Disease is shaping up to look like an even greater epidemic than AIDs. This doctor asserts though, that compared to the research that was being done on HIV in the beginning of the AIDs epidemic, Lyme Disease research right now is alarmingly elementary and rather non-existent.
I'm sure that controversy exists in the early stages of any new disease or epidemic, because typically the initial reaction to something that we don't understand is to either fear it and avoid it, or ridicule it. Unfortunately though, as this happens, lives are coming to a screeching halt, much like mine has.
When Lyme Disease moves from it's early stages to its late stages, the symptom list grows exponentially. Initially, a patient may have 2, 3, maybe 4 symptoms that are easily ignored. By the late stage of the disease, the official symptom list expands to over 57 symptoms. This may seem nearly impossible and like an exaggeration, but think of it this way: the brain is the control center for the entire body. If there's an issue in the brain, then virtually anything in the body can go wrong, because the brain is the commander of every organ, cell and function in the body.
For me, the part of my brain that has been most affected by the disease is my autonomic nervous system. The autonomic nervous system is the part of the brain that controls most of your bodily functions that you don't have to think about. It controls your heart rate, blood pressure, breathing, body temperature and stomach function. In the conventional medical community, they call this autonomic condition Dysautonomia. Doctors are seeing it more and more in young female adults, but since Late Stage Lyme has gone unrecognized, conventional doctors "have not discovered the cause". A patient with Dysautonomia is most often bedridden, because when they stand up, their brain forgets to send the correct signals to send blood to the brain. This means a significant drop in blood pressure upon standing, along with an increase in heart rate, because the patient's heart must try to beat overtime to get blood to the brain so the patient doesn't faint. Testing revealed that for me, when I stand up, my heart rate always reaches between 120 and 145 beats per minute, without even having taken a few steps yet. This is often a target heart rate for someone that has been running on a treadmill for over 25 minutes. This is a typical characteristic of the condition. As a Lyme and Dysautonomia patient, I also experience difficulty breathing, as though someone is sucking the air out of my lungs with a vacuum cleaner, my stomach does not contract or digest food properly (if at all), and I can't warm myself up or cool myself down, to the point where my unstable body temperature effects the function of my heart. The room is constantly spinning and unstable, and for duration of the time I've been diagnosed, I've felt like I've been living on a rocking boat.
The conventional opinion about Dysautonomia is that it is a lifelong illness, and that a patient must adapt to their new sedentary lifestyle. Lyme literate physicians believe otherwise though, and believe that it is often caused by neurologically based infection, and that a patient has the potential to get better. I am choosing to believe this too. The unfortunate thing is though, that many undiagnosed lyme patients that have other neurological diagnoses such as MS, ALS, or Alzhiemers don't have doctors that are educated about and open to Lyme Disease. These patients are forced to accept their fatal diagnoses, and the notion that they won't ever regain their lives and strength, when in fact that may not be the truth.
Late Stage Lyme Disease can cause a multitude of symptoms and conditions. One of the most disabling and isolating ones though that I also suffer from is "Multiple Chemical Sensitivity", or "MCS". This phenomenon occurs when a Lyme Patient becomes too "toxic". When the Lyme bacteria replicates and dies, it creates toxins in the body, and some patients have difficulty eliminating those toxins. These toxins are harmful to every organ in the body, but are most detrimental to the brain. They call them "neurotoxins". In a patient with Multiple Chemical Sensitivity, their body has become so toxic inside that it starts reject all of the chemicals that surround them outside of their body. This means that a patient becomes increasingly ill when exposed to perfumes, fabric softeners, hair sprays, gasoline, and just about anything made up of toxic synthetic materials. A healthy body has the capacity to absorb and then filter the chemicals, but a MCS patient's does not. Since my autonomic nervous system is what is most affected by the disease, when I am exposed to everyday chemicals like Downy, lotions, or hairspray, my heart rate becomes erratic, my blood pressure drops to dangerous levels, the room spins, and I begin to lose the ability to do simple things like speak, breathe, or walk. This is why I, and many other patients like me, can't leave the house anymore. When I do, someone typically has to scrape me off of the floor.
"Neurotoxins", the toxins released from the Lyme bacteria, are also responsible for the reason that Lyme treatment is much like treatment for Cancer in that it makes a patient violently ill before it makes them better. This is why it takes a Lyme patient so long to heal, and why they become so disabled instead of stronger on treatment. Treatment brings about horrendous symptoms ranging from dizziness, chest pain, twitching, painfully heightened senses, widespread pain and burning, exhaustion and seizures. For me, treatment has been an uphill battle full of ER trips, days on the couch, and long trying nights. Sometimes when the bacteria is dying off, it makes a patient feel like they're about to go with it. But despite the tumultuous days that treatment brings, and despite how frightened and disheartened they may be, patients still must forge ahead because it's the only way out.
Lyme Disease, Dysautonomia and Multiple Chemical Sensitivity have a way of making a patient's world seem very small. Just knowing though that someone close to me has read this and may understand me a little better makes my world seem so much bigger. Thank you so much for hanging in there through all of the information presented in this letter.
Please be patient with me throughout my battle. I know it can be frustrating when I can't attend things, cancel plans, or fail to keep in touch. I get frustrated with myself and my body too! I also know that a lot of this is hard to wrap your brain around since it's so out of the norm. I ask you though to please hang in there with me through treatment and the ups and downs of this disease, because one day I will be in remission and will be out living life with you once again.
Thank you for taking the time to step into my world for a minute. Take care of yourselves!
Thank you Candice.....