Lyme Awareness Month

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A quick sketch of my chest port in honor of Lyme Disease Awareness month!

My Lyme diagnosis came almost 10 years after I was bit by multiple ticks while hiking.

What do I wish I knew then?

  • Many people do not get the bull’s-eye rash, and you can absolutely have Lyme without presenting a rash (contrary to what my Dr told me at the time.) I could’ve saved myself from years of pain and cognitive dysfunction if I had been treated immediately after my bites.
  • Routine blood tests for Lyme are not reliable and could prove deadly (link)
  • Also, be sure to research Lyme CO-INFECTIONS, these can be even more harmful than Lyme itself- I also have Babesia and Bartonella.
  • 80% of ticks in Europe carry Bartonella and if you happen to be in NY over 40% of ticks in the Hudson Valley are positive for Lyme AND Babesia (and these rates are increasing all the time).
  • Also, because this is a picture of a port, I’d like to warn anyone with a PICC line to be aware of the symptoms of blood clots. I had a picc for ONE week and developed DVTs (aka blood clots) almost immediately, but doctors thought my symptoms were from an allergic reaction. It wasn’t, and I almost died. Ports require major surgery with anesthesia but can safely last for years and there is way less risk of infection and clots. (I’ve had my port for almost 4 years now with absolutely no issues, one of the best medical decisions I ever made! It has also allowed me to treat my dysautonomia with a liter of saline everyday since no other medications helped!)
  • Lyme almost always appears alongside other chronic illnesses like dysautonomia/POTS. I believe this is because our immune systems are compromised and therefore we are more susceptible to infections like Lyme and co-infections.
  • Lyme is commonly misdiagnosed as Chronic Fatigue Syndrome, Dementia, Arthritis, or Fibromyalgia.
  • Bartonella (which greatly affects your brain) is commonly misdiagnosed as an emotional or mental disorder such as depression, anxiety, or even Bipolar Disorder and then you are often prescribed psychopharmaceuticals, which do not help since they can only mask the Bartonella symptoms for so long before it’s obvious they aren’t alleviating symptoms…and then of course you’re even worse off because the root cause has been ignored and once you’re labeled with a psychological condition it is nearly impossible to get doctors to believe you have a serious health issue and not be brushed aside and treated as if it’s “all in your head”!
  • Babesia is known as a “blood parasite”- it is almost impossible to eradicate because to do so, you’d have to kill yourself (literally- since it is in your blood cells). (link)
  • If you think you might have Lyme, you really have to be your own advocate, don’t let a misguided doctor brush you aside or misdiagnose you like I dealt with for a decade!
  • Interested in why Lyme or Chronic Lyme has become a “controversial” topic? This article (link) sums it up nicely

Feel free to comment  with any questions!

PS- It’s also Ehlers-Danlos Syndrome (EDS) Awareness month (shout out to the zebras!)

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Another painting in progress with a little bit of lime green in honor of Lyme awareness (and it shows my hand which frequently experiences severe joint pain that sometimes prevents me from painting at all).

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