Health update — Lyme disease diagnosis

Hi everyone, it’s been a long journey since I was struck with seemingly random, intensely painful and debilitating, arthritis — coming and going every few weeks to months, affecting all different joints from my knees to my wrists to most recently my ankle last August.

I have seen three different doctors and had my blood taken twice since August. My first doctor told me it was most likely rheumatoid arthritis but the blood work came back negative, even though you can still have this disease without a positive test (seronegative rheumatoid.)

My primary doctor was not very proactive about my health issues, especially after the negative test results. I had an overall good experience with her, but the fact that she was very quick to ignore my symptoms was extremely frustrating. I’ve learned that that’s how it is in the modern American health system. You have to beg your doctors to take you seriously.

Thank goodness to my blog readers like you, my family, even co-workers who pushed me to keep on fighting for answers. It was all of you who saw my pain and understood it. Thank you.

I sought out a rheumatologist back in September, but the soonest available appointment was not until November. The rheumatologist had me do further blood work which was just a week ago.

I tested positive for Lyme disease. I spoke with the doctor on the phone today to confirm the results. She prescribed antibiotics for me that I will be taking for the next month.

Lyme disease, if not treated immediately, can lead to devastating long term symptoms. This includes debilitating episodes of arthritis. It also includes lethargy, constant muscle aching, brain fog, neurological issues, and heart problems. Some say it can also cause psychological and mood disorders.

Lyme disease is more clearly understood than RA, but there is still a lot of unanswered questions. We know that it is caused by tick bites who carry the disease. But why are some people more susceptible to it than others? We all spend time outside and we are all exposed to ticks. Is it random, is it luck? Are some people predisposed? Does it all come down to possibly having a weaker immune system?

Along with my Lyme disease diagnosis, I have still not ruled out rheumatoid. There is some controversial research surrounding the two diseases and their connections. Some say Lyme disease mimics rheumatoid and other autoimmune diseases, some say Lyme can be the causation for rheumatoid.

Another theory proposed by medical professionals is that Parvovirus B19 can eventually lead to RA. My test showed that I have had this virus before (although it is not currently active.)

I am content to finally have some clear answers. I feel validated and heard in my chronic pain. And I am hopeful that I will find relief through this treatment. However I am continuing to monitor and pay close attention to my health and symptoms. I am still watching out for signs of RA. I am continuing to research. I still feel it is very possible I have an autoimmune condition, or at least a more weakened immune system.

When the first doctor I saw brought up autoimmune, she asked if I was often sick as a kid. My immediate response was “no” quickly shaking my head. And then just a few days ago I felt repressed memories come back to the surface. I remembered my mom saying “you were always getting so many viruses.” I remember a lot of doctor visits, never figuring out what was wrong with me but saying it must be some type of virus. I did get sick a lot as a kid, and I suppressed all these memories until just now.

It’s crazy as you get older, you completely accept and tolerate symptoms. How did it take me over a year of arthritis problems to finally seek professional help?! I have been living with Lyme disease over a year, probably several years… that means for years I’ve been managing chronic pain and lethargy… and accepting it as normal. You feel sick for a length of time, and you just normalize your symptoms. How crazy is that?!

What I have seriously learned is that we all have to quit normalizing our pain. I know I must not be the only one who does this. Talk about your struggles. Stop trying to be “strong” — admitting your weakness takes true strength, actually. Go to the doctor — they may not take you seriously — but don’t stop pushing them until they finally do. Keep taking those tests. Keep doing your research. Keep talking to professionals. Do not stop until you find your answers!