4 years ago today on May 9th I began antibiotics treatment for Lyme Disease.
I celebrated with some gelato with a friend.
I see this picture of me and I see how tired I look. I see how frail I am. I see several frightening months of knowing something was very very wrong but getting no real answers from doctors. I see a glimmer of hope in my eye that maybe things were about to turn around.
My Lyme Disease story is unusual in that I did not find a tick or wake up one day with a bullseye.
It is usual however in how I got stuck in the cogs of the medial system and essentially had to figure out what was wrong with me in order to find the right kind of dr to treat me. Lyme Disease is so common and yet has become a hot button issue in the medical community specifically around whether it is possible for Lyme Disease to become Chronic.
On Monday March 5th of 2012 I got a cortisone injection in my back to treat some lower back pain and the pain in my left foot which unbeknownst to me or my pain dr was actually CRPS.
What I also didn’t know was that at some point earlier in my life I had been bitten by a tick and that a dormant Lyme infection was inside of me. Steroids are powerful and suppress our immune systems which is great when that is needed. The steroid injection in my spine however was able to lower my immune system enough that within a day of the injection very strange things began to happen.
First my skin around the injection began to burn. This seemed like a possible reaction to the injection so I just put some ice on it and took a day off from work. The burning however continued. By that Saturday the burning had spread all the way up my back and around my sides and by the time I left work it was running down my thighs. The pain was bad enough I ended up going to the ER which I had NEVER done in my life.
I was told I had an allergic reaction to the cortisone, given IV pain meds and sent home with some more pain meds. I knew that couldn’t be right because I had had two other cortisone reactions and NOT had this kind of sensation.
By that following Monday I could barely walk. My husband had to get in the shower to help me get clean and dress me. I got an emergency appointment with the pain dr who did the injection who had NO idea what to do. He spouted off that maybe the injection had triggered some kind of reaction in my parasympathetic nervous system and that I needed to take two weeks off of work.
I never went back to that job and would be unable to work full time for the next 4 years.
For the next month more strange things began to happen. The skin burning soon was all over. My joints started to go numb and then started to constantly hurt. I had headaches that lasted from morning until night. My right breast felt like ice was being applied to it. I began to have a hard time remembering things people had just told me or even understanding what people were saying. My reflexes were off and just touching me would send off electrical shocks. I kept losing weight and barely ate.
I went from being a fairly active person with a full-time job to a person who lay in bed all the time.
After two weeks I went back to the orthopedist who had suggested I get the cortisone injection. He was so concerned we did an emergency MRI to look for bleeding in my spine. The MRI showed nothing. My pain dr and PT became worried maybe I had MS although no steroid injection could “trigger” MS. I was given a referral to see a neurologist in Charlottesville to hopefully rule out MS and any other neurological disorders since a lot of my symptoms were neurological.
The neurologist took one look at my history of anorexia and decided I was crazy despite the number of very real symptoms going on.
He told me I needed to see a therapist.
This was a huge blow but I knew I had to keep going to hopefully find out what the hell was wrong so I could begin treatment to get better.
I had a Lyme Test done which was negative. This was another huge blow as so many of my symptoms seemed “Lyme-like”. What I didn’t know at that time was that MANY Lyme tests can have false negatives because the testing isn’t 100% and that you are also not considered “positive” unless you have a certain amount of bands. The state that I live in now MAKES drs tell you this ahead of time.
I saw more drs and had TONS of blood work drawn and other tests like a nerve conduction study. No one could figure out what was wrong.My insurance refused to do another MRI to look for MS because I had already had two in 3 months. I had numerous possible diagnoses mentioned: Marfans because I am thin and have long arms, breast cancer because my breast hurt, fibromyalgia because everything hurt, AIDs etc etc etc. Nothing made sense.
I was terrified.
I should mention that while this all was going on we had JUST lost my mother in law to colon cancer that January and Sean and I were MONTHS away from getting married that July. It was a terrifying time with so much going on. A lot of nights I didn’t sleep because of the pain and I would lay in in bed and just pray to the universe to let me find someone who would help me.
I cried at the thought of possibly being unable to walk down the aisle on my own.
One day in late April I looked up the word cortisone injection and then various disease on Google and low and behold when I typed in “cortisone injection Lyme” I found a few posts on a forum about people who were well and then got VERY sick after and it turned out that the cortisone could trigger the infection due to the immune system suppression. (You can read more about that here and here)My heart started to race. When my husband came home I told him what I had found and he said “well that’s funny because I saw a friend of mine today who had a cortisone injection and then got sick. It turns out he had Lyme too”
I felt like it was a sign from the universe.
Nothing else made sense. The doctors weren’t helping. I kept getting worse and worse.
Thankfully I found a dr who was willing to entertain the idea that perhaps I did have Lyme and to just see what would happen on a month of Doxycycline.
I started to get better. I started to walk more easily. I was able to get out of bed more often. My joints and skin hurt less.
That was how I knew that this had to be the key.
I also had what is called a herxheimer reaction where as the Lyme spirochetes die off, your symptoms get WAY WAY worse. A week after starting the doxy my joint pain got so bad I couldn’t walk at all. I knew what was happening and though the pain was awful I knew my body was telling me I was on the right track.
Exactly a month before I got married I had my first appointment with what is known as a Lyme Literate Dr aka LLMD. This is a dr who believes that Lyme infections often take longer than 30 days to treat and also are willing to treat outside the box. They are well known for understanding Chronic Lyme Disease and use lengthier treatment protocols than other doctors do.
She retested me for Lyme and did more extensive testing than just an ELISA. My test was positive.
I was diagnosed with Lyme Disease with a co-infection of Bartonella as most ticks carry several tick borne illness bacteria in them. Most people who struggle with Lyme have more than one bacteria which complicates getting better.
It has been a long journey.
I have taken countless antibiotics sometimes 4-5 different kinds at once. I have spent more money than I ever imagined on my health due to LLMDs not being able to accept insurance. I have done crazy things like Hyperbaric Oxygen treatments and cupping and terrible tasting herbs. I have been in the ER multiple times sick with side effects to various medications or in terrible pain. Its been up and down and down and up.
It’s changed my whole life.
A lot of days I never thought I would ever get into remission. I thought maybe I would forever be sick. Some days I felt like there was no point in living. Some days the pain was so immense I wished I would just drop dead already.
Today I found out that my latest Lyme test is negative.
This is a new VERY sensitive test done through urine. According to my dr it is the MOST sensitive test we have. As some of you know I had a spinal tap done last year when I was going through extensive testing with a very knowledgable neurologist who deals a lot with Lyme patients. The spinal tap showed no signs of spirochetes but I was always uncertain if that was really the end of things.
I still struggle with a lot of joint pain and some wide spread nerve pain. Thankfully due to that incredible neurologist I know that the Lyme did A LOT of damage to my brain, small fiber nerves, stomach, and immune system and what I am feeling isn’t Lyme but the damage that was left behind.
This test result shows that to be true.
I have spent the past two weeks worrying that my test would be positive. My dr made it clear if it was that I would be starting IV Rocephin immediately. All I could think about was herxheimer reactions and how sick I would feel during grueling treatment after treatment. I have been scared to find out the truth for this very reason.
It seems odd and lovely to find this out 4 years ago TO THE DAY that this journey began.
What a funny coincidence.
I wish I could travel back 4 years ago to where at this time I was probably sitting in this very spot at my mom’s house. I wish I could tell old me that a very hard journey lay ahead and it wouldn’t be ANYWHERE as easy as I thought in the beginning. I wish I could tell myself that things would get harder than I ever imagined. I wish I could tell myself so many things.
Even though things are still very hard with my CRPS and even though I am still in a wheelchair and still struggling, I just want to say that I made it.
I freaking beat Lyme Disease and I am here to tell the tale.
Many people don’t and it kills me to hear of people who die from it or kill themselves from it. I know someone who did and it breaks my heart that she is no longer here.
If you are sick with Lyme and you are reading this…KEEP GOING. If you are reading this and you think you might have it, GET TESTED and don’t accept that a negative test is the only result. There’s a lot of controversy about Lyme and I am unsure sometimes where the truth lies but YOU know your body. Listen to it. Thats what I had to do to find out what was wrong.
Listen to your body and it will never steer you wrong.
So… Lyme you were awful and terrible but I know you made me a better person. You showed me strength I didn’t know I had. You pushed me to be a fighter. You gave me tremendous empathy for those who are sick.
You taught me to never take stuff for granted.
Thank you for that.
**Sadly as of December 2016 my Lyme Disease is back out of remission and I am once again beginning the long ardous process of trying to get better**