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The 2 Year Journey to a Chronic Lyme Diagnosis

*It is important to note that this was just my journey yours may be much different but I'm hoping this can help those that are also struggling or don't even have a diagnosis yet.


While reading through my journals to write this article I feel so grateful for how far I’ve come. So if you are reading this and feel like crud with or without a diagnosis, keep trying, keep going to doctors, keep advocating for your health.


Looking through the journals of the early days before my diagnosis; The confusion and self blame stand out so strongly, I kept blaming myself for my lifestyle, if I was just more positive then I would feel better. I thought I was going crazy.


It all started with a horrendous migraine that rendered half of my face numb and my lip droopy, my speech slurred. I had to use furniture to steady myself, I could barely make it 2 feet out my door to take my dog outside. I was petrified, I’d never had a migraine, I rarely get headaches and this left me feeling like I got hit by a bus. Sounds like a stroke doesn’t it? So I thought too so after 3 days of this I took myself to the hospital and they gave me a migraine cocktail. Thankfully the pain subsided but that’s when all of my symptoms truly became apparent.

Before this I was feeling tired, a bit out of it, but this was the turning point in my diagnosis journey. I never had a tick rash and 50% of people with lyme never do. And that is just the diagnosed population who knows how many more are suffering.


After this my symptoms were:


  • Exhaustion

  • Extreme weakness

  • Migraines

  • Headaches

  • Period coming every 2 weeks

  • Weight gain

  • Brain fog

  • Hair falling out

  • Joint pain

  • Depression

  • Panic attacks

  • Night terrors

Before these symptoms I was very active, I could ride 6 horses a day, go to hot yoga at 6 am and make it through the day. I noticed there was a problem when I had to stop riding all together, which is what I did for work and I couldn't do yoga my muscles were so tired. I couldn't push myself off of the mat. I had to stop doing everything that made me happy, I still wanted to but I physically couldn't make it through a class. I knew something was seriously wrong but sadly it's been a long journey to have doctors that figured it out. I'm hoping this article can help people get an earlier diagnosis.


I went to my first doctor and told her my symptoms. She said many things that all dismissed me and confirmed this was my fault. Mind you at this time, I was eating a very healthy diet, I was exercising, and quit drinking.


After 2 years of this, and a lot more doctors telling me my blood work was for the most part normal, my liver enzymes slightly elevated but they kept moving me around. I was seeing a neurologist to test me for MS because my weakness got severely worse, rheumatoid arthritis specialist who told me I was depressed, and the list goes on. Of course I was depressed. I was chronically fatigued and so physically exhausted some days I couldn’t get out of bed because I felt like my joints were 1000 pounds. It’s also important to note that even though at this time I did not know this; lyme affects your mental health drastically, panic attacks and depression are very common symptoms.


During all of this the joint pain continued to get worse and then my right hip was in excruciating pain, one doctor told me that I was probably noticing the pain because some other symptoms were subsiding a bit. I was infuriated at this point I was done questioning myself. I finally found a doctor 2 YEARS into the journey who did a right hip X Ray and MRI and told me I had a hip impingement and labral tear because my cartilage was worn down. At the same time I found Doctor Motley who sent me to DNA Connexions to do a urine sample. Finally a confirmed diagnosis of lyme. ( I will link those both below.) The hips are a common area to be affected by lyme, I won’t get too much into the science here Doctor Motley is much better for that so definitely check out his page! He's also very understanding because he has lived it.

It is important to note that up until this point my blood tests came back negative. Chronic lyme hides in the tissues and is a stealth infection.


That brings us to now, I am so grateful to have an answer. I do need surgery for my hip and IT WAS NOT IN MY HEAD. A labral tear is extremely painful and it would keep me up for nights on end in agony. I had to stop riding and doing everything that I loved to do.

Lyme is serious and can precursor many serious diseases, unfortunately not many doctors know about it so it is important to do your research and find doctors that are willing to think outside of the box. I do not write this article healed or cured, and it is possible that I will live with this; but I am on the route to managing or even better curing it.


I blamed myself for the mental health portion and thought I was just a mess. For those struggling with lymes that I have spoken to, the mental portion can be the worst of it. So please hang in there, it will get better and there are educated doctors that can help you.


Please reach out to me if you are struggling with lyme and I will do my best to share my resources or just be a supportive ear. Lyme gets dismissed by many, and hides in many other diagnosis’ but the effects are serious so don’t minimize your pain. There are so many different types and different symptoms this was just my journey.


I will continue to add to the resources link below and please feel free to share your resources.


Resources:


Unlocking Lyme - Dr. Rawls






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