In 2013 I began treatment for Borreliosis (Lyme), Babesiosis, and Bartonella. After years of health problems and misdiagnosis, I had already been cataloging and recording my prescriptions and medicine. But I began to keep my empty bottles after I was finally accurately diagnosed with what is commonly referred to as, Late Stage Lyme Disease or Chronic Lyme.
I thought it would be a good visual of how far I had come, if I had a pile of pill bottles to show for it – a warped prize I guess you could say. I was hoping I could “mark the moment” and give hope to the Lyme community. I wanted a picture of what I had to go through just to get my health back. Pictures tell a story that we simply can’t articulate with words. My only thought back then was that a couple of boxes of bottles would bring some awareness to this awful disease and maybe it would make someone do a tick check or keep a friend from going through a lengthy battle of their own.
As many of my readers know, by 2014, as my neurological symptoms got progressively worse, I had to get a PICC line, then a port… and yet another port. I did IV medication for over 9 months. My husband and I decided to continue keeping the empty medicine bags, vials, and containers as much as we could. We didn’t keep everything obviously, simply because we lacked the space, but we kept the most important. This week my husband helped me sort and count.
240 bags of Vancomycin
268 bags of Primaxin
79 syringes of Cefotaxime
218 syringes of Zofran
194 syringes of Vitamin B12
83 prescription bottles – oral antibiotics, kidney meds, migraine meds, pain meds, etc.
8 bottles antibiotic eye drops
(Also pictured: heparin, saline and other misc push syringes.)
They say a picture is worth a thousand words…
These pictures don’t include my vitamins, supplements, and natural remedies or all of the things we didn’t keep which would have probably filled our entire living room and kitchen. I think these pictures get the message across. Lyme and co-infections are serious, but they are not being taken seriously until it’s too late. When I went to my doctor in 2007 with a mile long list of strange MS-like symptoms, I wasn’t taken seriously. But even if I had been, there isn’t an accurate way to test someone who has been bitten years before and is still suffering symptoms of an aggressive bacterial infection. I didn’t get a CDC positive result until 2014. My immune system was shut down by the infection. I would not have shown positive on a Lyme test that is made for people who have just been bitten and that tests for their immune response to a recent bite. Why is there not better testing? Why is there not a cure? Why are people still suffering and having to spend thousands out-of-pocket for treatment?
Tick borne diseases are at epidemic numbers. The CDC reports that the number of Lyme cases is 300,000 and climbing. I believe this number is actually much higher because of the thousands that are misdiagnosed like I was for years. It is only a matter of time before you or someone you love is affected by this disease. Don’t shrug off that tick bite you had last summer and now that bone aching fatigue and joint pain that won’t go away. Don’t let your doctor tell you it’s all in your head. If you know something is wrong, you just know – fight for your own health, no one else will. Take a few extra seconds and do a tick check on you and your kids when you come inside. Do tick checks on your pets. Educate. Be an advocate. Spread Awareness. It is that important.
Please don’t let this become your story.