Ankylosing Spondylitis With A Twist of Lyme
Chronic illnesses are a lot like potato chips, you can’t have just one!
If our bodies allowed us to deal with chronic illness one at a time, a lot of lives would be a lot more manageable. If you wake up in pain, you can say for certain you know why.
“My joints hurt! Must be ankylosing spondylitis”
We take our AS meds and if we feel better...Fantastic! If we don’t, we know our current treatment plan isn’t moving us in the right direction. However, when you have more than one condition that causes similar symptoms, we can never say for sure what’s causing us to hurt and if a treatment is working.
This is my daily struggle.
Spondylitis with a twist of Lyme
In June of 2000, just 6 years after my AS diagnosis, I woke up unable to move, with a level of pain and stiffness I couldn’t have ever imagined. My fever spiked at 104, my eyes were bulging out, my head was full of angry bees, and I thought I was on my way to death.
It was really bad!
Three weeks after symptoms started, I was diagnosed with Lyme Disease. This was not surprising because I was living in rural New Jersey and had just returned home from school in Connecticut. Both areas were literal Lyme hot spots. And for the record, I never saw a “bulls-eye” rash, so fortunately I had a doctor who knew what else to look for.
Much like my ankylosing spondylitis in my teen years, I sorta forgot about my Lyme in my 20s. Or, at least, I didn’t think it played a major factor in my health. I continued to treat my AS, but nothing I took really seemed to help.
I wonder why?
It wasn't until I watched the Lyme Disease documentary “Under Our Skin” that I even considered that my Lyme was still active. And by “considered” I mean, it was 100% obvious that I didn’t defeat my Lyme back in 2000. I looked at the patients in the film, and saw a whole lot of myself.
I decided to get treatment.
Fighting on two fronts
The treatment for Lyme is a whole lotta antibiotics. So many that I was taking similar prescriptions to someone with HIV or Malaria. A hospital pharmacist who became aware of this treatment plan told me that if I have an infection so bad that I need to take a certain drug, I should be in the hospital and not at home. I couldn't tell her I was treating Lyme disease. The reasoning I don’t want to go into here, but if this sparks your interest, please look up why Lyme is taboo.
There is a lot of trial and error, namely because Lyme is caused by several different strains of bacteria, and each strain requires a different treatment.
However, once I found the correct treatment protocol, I started feeling better than I had in years.
I always thought I had AS with a twist of Lyme, however, I began to realize that my Lyme might be my primary diagnosis, and AS came second. Which for someone like me, is quite an identity crisis. But, I managed to embrace them both.
The problem here lies...
What’s causing my pain?
Now that I am fully aware of at least two conditions that cause me pain, stiffness, and feverish flares, I can never truly put my finger on which disease is active, or if they are flaring concurrently.
This makes having an educated conversation with my doctor all that more difficult. Is the new NSAID not worth my time? Or, has the antibiotic I'm currently on run its course and it's time for the next?
The only way I can come close to figuring it out is to go off one for a week, and see how I feel. Then go off another and take note of the difference. It’s a long and painful process that doesn't always provide answers. But, until a test is developed, it’s the best I can do.
The hope I have is that I can find a combined treatment plan that will take care of both conditions simultaneously. It’s happened once or twice, but it doesn’t always last.
What can I do?
The more the miserable
Having one chronic illness is terrible. Having more than one is torture.
Not only does it double, or triple, or quadruple your chances for physical pain, it also takes a toll on your mental wellbeing.
This is a topic for a much longer post, but the mental strain from having multiple diseases is often worse than the physical strain. Along with the unknown discussed above, the feeling that the whole world is against you dives deep into your soul.
Why me? Why this? Haven’t I suffered enough?
They say we aren’t given more than we can handle.
I don’t know who decides this, but I think I have handled enough.
Do you use the word disability to describe your AS?