Life with a Twist of Lyme

Hi everyone,
 I just thought, with the tittle and all, I should probably share my story about my life with Chronic Lyme Disease and not allow it to define who I am. 

  When I was 15 years old I was in my sophomore year of high school and in my 7th year of ballet. I was very active, worked at a local supermarket and very passionate about dance to the point where I was considering making a career out of it. Things became a lot different that fall, October 2008 when I started to develop severe sharp and achy right hip pain. We all figured it was from the dancing and blamed it on my hyper-flexibility when just a couple months after my knee, on the same side began to give me troubles as well. I ended up going to a chiropractor as much as 3x a week to try and figure out the problem, had X-rays and MRI's done as well and still nothing showed up and I was quickly getting worse. I was getting to the point where walking, sitting in any position, laying down, everything would cause pain to my hip area and my knee. After the winter performance at my studio I decided to take the month off to rest and figure out what was wrong. Had electrodes and ultra sound therapy at my chiropractor along with many other adjustments to try and help what was wrong, all the while coming up with nothing. I was still going to each of my dance classes and sitting in to take videos and notes so I wouldn't fall behind. After a month of that I decided to just go back to dancing and work around the pain. After all, the pain always decreased while I was doing the one thing I loved the most, dancing. After all this I also began to have some other strange things go on, I was tired all the time, couldn't seem to ever have enough energy to get through the day, would constantly get random fevers, night sweats and more. Then the rest of my body began to get ache and pains on top of the sharp hip and knee pain I was experiencing. I decided to go to my primary care doctor to see about my hip and knee, he puts me on some pain medication to see if it would help anything then after I went through the entire bottle with no help from it he basically told me, a 15 year old girl, that it wasn't real pain and I'd simply have to live with it. This of course sent me to rock bottom. I became so depressed because no one would believe the pain and sickness I was in. I had also began to loose my appetite as I began to get more and more sick to the point where I was anorexic and you could see each of my bones. 
That May I had an accident at school that left my right shoulder in complete pain. I didn’t think too much of it, just thought I tore something and went on with my life so I went on in pain and unable to move my arm. The very week after I had a show and my shoulder looked as if it were swollen and I could hardly hold it up, I just thought it was from all the rehearsals so I took an anti-inflammatory and kept going. Right after that show I decided to take the summer off so I could give my body a bit of a break. Still not getting better and not wanting to go back to that other doctor my mother decided to switch offices so that July 2009, just a week after my sweet 16 I went in for my first physical. This physical just so happened to have been done by a doctor there who was also a Lyme Literate Medical Doctor. I was open to her about everything. My pains, depression, anorexia and so much more the list goes on and on. She also did some tests and a big questionnaire right there to analyze some things. For one thing I found out I had short term memory loss, that certainly explained a lot! She also asked me a question about whether I had any kind of streak marks, like stretch marks, thinking nothing of it I've had some since I was about 12 after I had lice they suddenly appeared on my body and I just assumed they were stretch marks (of course made no sense on a skinny 12yr old) and she wanted to look right away and basically made the assessment right there I had at least Bartonella Disease which is a co-infection of Lyme Disease which could possibly have turned into Lyme disease when them became Chronic, not from a tick but from lice. She had me get tested for all sorts of things, 10 tubes of blood total, one being for Lyme and sure enough, just minutes before I was to leave for my first physical therapy appointment for my hip and knee I get a call, I had Chronic Lyme Disease and she wanted to see me immediately.
It was a sigh of relief just to know I wasn't crazy, that there really was a reason for all my pain and for what I thought was normal daily things turn into symptoms of this chronic disease. She immediately started me on 2 different kinds of antibiotics and told me what I would be hearing for even years after "you are going to get worse before you get better" and boy did that ring true, this was merely the very first step of my journey or what one might call a nightmare.
After this visit I started my antibiotic treatment and physical therapy. To make a very long story short, I have seen at least 5 different physical therapists, so many X-rays I've lost track, many MRI's on my hip including one with an extremely painful dye injection to the bone, I will never ever forget that day and that pain, at this time I was going up to Children's Hospital in Boston a few times a month for about 3-4 months to try and find some answers and get my life back. It turned into a complete waste of time and brought me down even farther. The only good I think I found from all those visits was the discovery of my shoulder, because of the fall and not getting it put back into place until 6 months after, had developed severe MDI, Multiple Directional Instability, where my shoulder would pop out very easily from any direction with very little force, so bad that the surgery for this would be useless. Meanwhile I'm experiencing rigorous side effects from all the antibiotics I am constantly being rotated on because we didn't want my body becoming immune to any of them so I was never on a combination for too long before it would get switched up. I was also going to Children's Hospital for physical therapy on my shoulder, hip and knee, all on the right side. This proved to be useless as well. 
Also at some point in this mix, my Lyme Specialist at my doctor's office suddenly left with no notice. The providing of treatment for Chronic Lym isn't something a normal doctor would do, because it is considered to not exist, simply because insurance companies do not want to pay for the long term treatment used to treat it. (Note it is the only treatment proven to work, there is not enough research or other treatment options out there so patients have no choice) We knew the office at the time did not believe in the treatment of Chronic Lyme so we understood her sudden leave. A doctor can loose their license for treating this disease, and it's happened even after they have saved the lives of hundreds of Lyme sufferers. So I was left without a doctor to treat me, but luckily I managed to find the last Lyme Specialist on Cape Cod and was able to see him. He took me and has been treating me since.
Not too soon after I started going to him for my treatment I was finished at my dance studio and needed something else to keep me going. Trying to go to college full time and work was getting to be a bit much so I needed an outlet. That's when I started going to the gym. I would do what I can when I could. My symptoms and side effects were still very extreme so I listened to my body and did what it told me I could do. I fell in love with the gym and I thought I could turn this into part of my treatment plan. I used cardio to help with my herxing, herxing is when the Lyme bacteria dies off really really quickly but fights you to stay alive and it can make you even more sick and miserable but, there is good to it because it kills off the Lyme! This will usually happen to me in the summer, the shower and whenever it would get hot, which is why I constantly got fevers, my body was fighting it off and needed to try and sweat it out like any other virus. So I adapted this and worked cardio like crazy so I could herx, and to this day it still helps, I know when I need to do cardio more is when I start to feel crappy! I feel much better after I sweat!
I was also beginning to find things that helped my joints. Many of them I adapted from my years of dancing and others I learned. I learned how to make my shoulder stronger so now it wont come out of place even while I sleep or reach for something behind me and my knee no longer dislocates like it use to either. Somehow I managed to get happier hips. Lyme has recently caused me to have sciatica in both of my legs however and starts directly in the center of my lower back. This too of course I recently tried physical therapy for and did not help. So now, I've began to do dead lifts! This has proven to help my back, I am slowly gaining the muscles I needed for years to help support my lower back and in the end it has also been helping my knee and hip. There's all sorts of good you can get from lifting and lifting heavy! I was eating healthy, taking the probiotics I needed to help fight the disease and of course, keeping up with my obsession for green tea and ginger tea! The natural markets around me have wonderful selections that helped me with many of my symptoms and helped my immune system grow stronger, I wasn't about to simply rely on man made antibiotics! I let nature help me out a lot!
After I started really applying a fitness and healthy eating lifestyle I began to see great improvement in my treatment and after 1 entire year of being told everything is in my head, 4 years of treatment and 5 years of being told "but you don't look sick" I am finally off treatment and in remission. July 2nd 2013, a week after my 20th birthday I was given the OK, around the same exact time 4 years ago I was given the news and started my journey, would have never imagined I would have gone through all I had. I must say through it all it has made me the strong person I am today. People telling me I'm faking it, over-exaggerating, all in my head, "oh something is always wrong with you", "you don't look sick, you look great!" meanwhile I feel like I'm dying and just spent the entire night throwing up due to my antibiotics, trying to figure out what I can and can't eat on certain antibiotics, try my hardest to eat something even though my body is telling me it doesn't want it and afraid it will just throw it up after, wonder if the migraine I've had for a week will ever go away, if these heart palpitations should worry me, whether the sadness will ever go away, when will the nights of sitting on the bathroom floor shaking uncontrollably end?, will my stomach ever decide to stop throwing up what's not in my stomach the pain is too much, if I'll have energy to get off the couch that morning, if I'll end up passing out in the shower this morning, if the skin on my body hurts to even the gentle touch of clothing will hurt the entire day, if I'll ever want to eat again, if I want to bother living this miserable life anymore. These and so much more were daily questions and concerns that were just normal for me to run through my head. That was not the life for me. I did all I could to get out of it, stay positive and get through it. And now I am 4 months free of antibiotics! No more what ifs and needing to take things day by day because I didn't know how I'd feel the next week or worry about taking my pills on time and at a certain time each day and eating before or after and what I could eat before and after taking certain pills. What is a nightmare became my every day life. But I over came it. Yes I can still relapse any day and I'm not 100% better I'm just at a place where I can handle my symptoms and "live with them", but I'm working hard to live my best in that time and doing everything I can to prolong that time by living a healthy lifestyle! If I hadn't chosen this lifestyle I don't know where I would be, I'd be weak, more fragile than ever and no where near the end.

I encourage all of you to better yourselves and heal your body through living well! It's amazing what good it can do for you inside and out! <3

Sometimes it take a little extra effort, research and trial and error and not always relying on a doctor to tell you how to get yourself well! Living healthy and living naturally go a long way for your body's health! 

Here is a list of some symptoms I have encountered during my time with Chronic Lyme and still items on this list I encounter every day in "remission". This does not account for the crazy awful side effects from each combination of antibiotics. 

Raised rash, disappearing and recurring (happened only on my calves thought nothing of it)
Headache/migraine
Stiff or painful neck
Sore throat, clearing throat a lot, phlegm ( flem ), hoarseness, runny nose
Over-sensitivity to light
Ringing in one or both ears
Upset stomach (nausea or pain, usually sharp stabbing) .
Bone pain, joint pain or swelling, carpal tunnel syndrome
Stiffness of joints, back, neck, tennis elbow
Muscle pain or cramps
Shortness of breath, can't get full/satisfying breath, cough
Chest pain or rib soreness (chest pain to the point of unable to move or breathe)
Night sweats or unexplained chills (wake up sweating buckets)
Heart palpitations or extra beats
Tremors or unexplained shaking(right hand constant shake, will get worse and go through body)
Burning or stabbing sensations in the body
Fatigue, Chronic Fatigue Syndrome, Weakness, peripheral neuropathy or partial paralysis
Pressure in the head
Numbness in body, tingling, pinpricks
Increased motion sickness (still can't do elevators)
Lightheadedness, wooziness
Mood swings, irritability
Unusual depression
Too much sleep, or insomnia (both...)
Difficulty falling or staying asleep (up till 3am most nights)
Panic attacks, anxiety (panic attacks on the daily)
Memory loss (short term)
Confusion, difficulty in thinking
Difficulty with concentration or reading
Forgetting how to perform simple tasks
Unexplained weight gain, loss (anorexia)
Extreme fatigue
Swollen glands/lymph nodes
Unexplained fevers (high grade)
Symptoms seem to change, come and go
Pain migrates (moves) to different body parts
Early on, experienced a "flu-like" illness, after which had not since felt well and got worse.