1- Dark Ages: Confusion and Doubt Phase
You are confused you know you have multiple problems and you are going from doctor to doctor. Yet you come back home with generic diagnosis. Fibromyalgia, Rheumatoid Arthritis, Migraine and with prescriptions that is only trying to address your symptoms not the underlying issue. After all the feeling of wanting to lay down, the trouble times of focusing or understanding, the sleepless nights, the fact that a simple cold knocks you out pretty hard aren’t very visible from outside even to the doctors. Doctors in general need proof through test results. So at first they listen to you and take you serious, but the moment you get normal test results they stop taking you seriously. They try to explain to you that it is stress or psychological or even better they tell you that you have some type of disorder (not disease) and that you have to live with it. Then they ask you to come back for a follow-up in 6 weeks. Wait a minute they didn’t prescribe you anything, they didn’t modify anything, yet they want you to come back? What for! So you stop going from specialist to specialist, because at this point they all got in your head and you are wondering if you are listening to your body too much.
2- Helplessness: Giving Up On Medical Community and Accepting The Current State of Your Life
For a while you stop looking for answers. Instead you take Motrin for the headaches, neck pain, shoulder pain and your joint pain. You try to take sleeping pills for your sleep issues and you think if the pain and the sleepless nights go away, your brain will start functioning better. So you accept the current state of the life quality (or there lack of) you have. Guess what though 4 month passes by and nothing improves. So you get angry and frustrated.
3- Research: Determination and Taking Matters In Your Hands
You start reading your eyes out and researching. You might as well put those sleepless nights to use, right? You go back to WebMD symptom checker and try entering different combinations of your symptoms and start reading on the entire list of diseases it suggest to see if any of them fit your symptoms. You even go back to different doctors to get tested for the things you suspect based on your research. At this point you are determined to feel better. That doubt you had at the beginning is suppressed and you won’t let the doctors make you feel like you are crazy anymore.
4- Pre-Diagnosis: Call It Luck, Call it Faith, Call It Whatever You Want
Among all the things you go through, you’ve become more vocal about your problems. You want people to understand that it hurts. Whatever “it” is that day. By chance that one friend, that one doctor you did not expect anything out of or the stranger that you’ve met at the park suggests you have Lyme disease. From that moment on nothing will ever be same again and you don’t even know yet.
5- Diagnosis: Testing and The Waiting For The Results
All of a sudden you find yourself going through ton of different tests. While waiting for results, you start reading on Lyme. If you are like me, you’ve never heard of it before. You have this weird, sour excitement. You don’t know which one is better; whether it is better to still be in the dark and continue the endless searching or to find out that you have Lyme Disease. The wait period is painful. You are scared. You go in for an appointment and find out you do have Lyme Disease. You are not even sure how bad it really is. You have been reading horror stories. People end up in wheel chairs and you think to yourself those has to be extreme cases. The doctor is very calm and she is talking about all the different medications you have to take and explaining why you need to detoxify. You think momentarily if it was as bad as the online community makes it sound like, your LLMD would seem more concerned. It can’t be that bad. Off you go home with ton of medical information and prescriptions.
In reality as bad as it is to have Lyme Disease, it is a relief to find out what you have is Lyme. Because things finally makes sense. Everything you have been feeling has an explanation. It is a weird mixture of regret/anger and relief really. Check out my post about my diagnosis here.
6- First Dose of Treatment: First Herxheimer Reaction
You are hesitant. You don’t know what to expect. (Read my blog post about my first dose here) You call a few friends. Cry some. You feel relieved that you finally know what is wrong with you, however you feel angry that you could have been cured a lot easier, if you only knew from the beginning. You are scared. You still do not know how things will work out. You take your first dose. You wake up the next morning feeling beat, feverish, sore all around – almost as if you got hit by a bus. You find it hard to move. You feel trapped in your own body. You are too weak to talk. And you think to yourself in panic OH MY GOD this is how my life is going to be like from now on. You spend the next few days nailed to the bed. You realize all the things you’ve read online were correct. Your LLMD was just trying to avoid causing panic. Four days (after the initial shock of everything happening) into this agony you remember what your LLMD said about detoxing and you have nothing at home to help you detox.
7- Life With Lyme: The Long Journey To Recovery
You go buy (with the help of a friend, spouse, family member) ton of things. A cane to help you walk. Supplements to help you detox, herbal drops, pills, powder mixes. Comfortable clothes like baggy sweat pants and t-shirts. You are gathering all the tools you can think of to help you feel better. You end up calling your doctor back and forth with questions. You don’t even know how you get through the first few months. Your life turns upside down. As you go along some days you feel horrible and some days you feel almost normal. You learn you have to take things as they come. You cannot determine bad days your entire journey to recovery. You have to be strong mentally. At times you will lose the motivation to even exists, because it will all feel pointless. The excruciating pain will even change your personality and you will become hard to be around. At times over something simple you accomplish, like attend an event after being indoors for weeks, you will be determined to beat this heartless disease. Regardless of the ups and downs of this disease you will have one memorable journey ahead of you and to make it all worth it will be in your hands.
8- Lyme Aftermath: Learning The Who’s And What’s Of Lyme Disease
Lyme is like a giant earthquake that hits home. As bad as the earthquake is the recovery from aftermath is the hardest part. Lyme is a very trying disease. The treatment is very costly that some of you will lose your jobs over it or will lose your home or go bankrupt. It also takes a lot out of a person in the supporting role, so some of you will lose friends or family members or even a spouse. You will see who your true troopers are, which is a good thing in a way. Best of all though, you will become a Lyme Awareness advocate. You will do your best to let the world know what this disease can do to a person.