Sometimes getting a diagnosis can be the hardest part of any health journey. I spent years trying to find out what was wrong with me and I’m sure a lot of you have been there too. Most of my life I was the “sick child” in the family but I didn’t really seriously start trying to find out what was wrong with me till around the age of 15 or 16. I guess my mom was right when she called me an infested little critter. I had to miss so much school from being sick that I almost wasn’t able to graduate. I was so desperate I went from doctor to doctor, trying conventional medicine, natural medicine, pretty much anything that got recommended to me to get better.
Around the age of 24 I found an integrative doctor who diagnosed me with candida, heavy metal toxicity, ANA and chronic fatigue syndrome. I thought I finally found my answer and dove head first into all the treatments he recommended. After 6 years of doing I.V. therapy weekly, prescription medications, herbal medicines, diet changes, and probably a hundred other things I can’t even remember now, I still wasn’t getting better. In fact, I was getting worse. He recommended I go to a rheumatologist to see if there was an underlying autoimmune disease that could be causing all my symptoms. Well the rheumo did find something called Mixed Connective Tissue Disease. Once again I thought I found the answer. I felt so much relief once I was told what I had. She said it was a mild case and that I should come back in 6 months for another test to see if it progresses before putting me on medication. Well I waited 6 months and during that time I got much worse. I was getting fevers everyday, couldn’t walk much without having to use a wheel chair, had trouble breathing, and tons of other symptoms I won’t bore you with. I went back 6 months later to the rheumatologist and my blood test showed that the MCTD stayed the same, hadn’t progressed any, and yet I was getting sicker everyday. She told me the only answer to all my symptoms would have to be some sort of infection so she told me to see an infectious disease doctor.
I went back to my regular doctor and told him what the rheumatologist said. He said he knew a list of all the things I didn’t have but couldn’t tell me what I did have. His next plan was to send me to a clinic in Arizona where they check for rare diseases. I was preparing myself mentally for the fact that I could have a rare disease but before we got that far, he said we should check for one more thing to rule it out before sending me off on a plane- Lyme disease. I told him, there’s no way I have Lyme. I’ve never been bit by a tick. Little did I know you could have been bit by a tick and never see a sign of the bite or you can even get it from mosquitoes, and who hasn’t been stung by a mosquito in their lifetime? So I went into the test with an attitude that this is just one more disease I’m checking off the list before going to the clinic in Arizona. Little did I know that the test would come back positive, and not just for Lyme but for multiple co-infections that go along with it like Babesia, Bartonella, West Nile, HHV-6 and more.
I was officially diagnosed about a year and a half ago. My life literally changed from that day forward. I didn’t realize what kind of giant I was about to start fighting, or how drastically my life would change. There was the moment of relief, of finally knowing the answer to why I was sick and that I wasn’t just crazy. My husband and I actually went out to eat that day to celebrate finally having a name for my disease. I felt like the episode of Golden Girls when Dorothy finally found out she had chronic fatigue syndrome. You’re so relieved to have an answer for what’s wrong with you that it doesn’t quite hit you yet that you have a life changing disease. That moment of relief was quickly replaced with despair, fear, anxiety and depression of not knowing where to start. How do you fight a disease that the medical community doesn’t recognize? What treatment will work for me since I hear so many things that others are doing with mixed results? How will I pay for this since it’s not covered on insurance and I had to quit my job because of my illness? Will I die? Will I ever be “normal” again? Why me?
I’m sure there’s a lot of you out there with chronic illness who have felt the same way. Just remember you’re not alone. Getting the diagnosis is half the battle. Now that I know, I can fight. And I’ll keep fighting until I’m better even on the days when it feels like I’m losing the battle.
I’ll discuss more about treatments I’ve tried, doctors I’ve seen and more about my mental and physical battles during my Lyme journey in another post so be on the lookout. Follow me on Facebook, Instagram and don’t forget to subscribe and follow me so you won’t miss a post!
I’d like to hear your stories as well, so please share them with me in the comments below!