Chronic Lyme pt4 – The results and the plan

All my results came in, blood, MRI, spinal tap, and I made the appointment to see my primary doc again to go over them about 2 weeks after the initial visit. In the meantime, the pain was still around. The severity ebbed and flowed, but it always made its presence known. I had also gone over the informational packet the doc had originally given me and checked off just about all of the symptoms listed as possibly Lyme related.

The doctor sat me down and went over each thing.

Spinal tap came back negative: I did not have MS or any other detectable neurological disease.

MRI came back negative: I did not show signs of any detectable neurological disease.

Blood test for Lyme came back negative: I have Lyme disease. What??

My doc explained that the available tests for Lyme, Elisa and Western Blot, are not very reliable. Also, they test for antibodies not the disease itself. If you remember his teenager-in-a-theater/my Jedi comparison form my earlier post, since I’d had Lyme for so long, it had already convinced all my antibodies this is not the disease you are looking for and they just didn’t exist, so therefore could not be detected by a test. Besides the blood tests are more for confirmation than diagnosis. He had already diagnosed me based on symptoms.

I feel like I need to take a moment here away from this story and explain a few things. At the point in my life when I was diagnosed with chronic Lyme, I wasn’t even thinking about my health journey. I lived in a world where doctors know everything, and can always, always be trusted to tell the whole truth because they are armed with all the information that is out there and only act on behalf of their patients. I had lived in that world all my life, and would continue to live there for many years beyond this diagnosis.

Doctors always give you the tests you need, always read the very precise, government approved results accurately, and always give you treatments and/or medications that will best heal the underlying problem in the quickest, safest, most efficient way possible. Always. I totally believed that and so totally trusted everything I was told then.

I don’t live in that world anymore.

My doc told me the best course of treatment would be to get a Peripherally Inserted Central Catheter, or a PICC line put in to facilitate IV antibiotic treatments. He strongly recommended to have it put in my chest, technically making it a Central Venous Catheter (CVC), rather than the more common upper arm locations of the PICC, since I had two small children (ages 5 and 3) and they might tug on it, or it could get more easily caught on something. He also explained that the IV treatment would be for a while, and insurance may not cover the treatment, but he would help as much as possible in working with my insurance company for the care that I needed. He gave me the referral for a hand surgeon to install my PICC line, and recommendations for a company for my IV meds and supplies and home nurse support. Lastly he gave me a prescription for Tramadol, a non-narcotic pain reliever, and suggested I look up supplements which might help deal with other symptoms and general support.

By this point, my head was reeling. A home nurse? Twice daily IV treatments?? A tube surgically put into my chest??? But that’s what the doctor said I needed to do, so by golly I was gonna do it all and as soon as possible because this Lyme thing was scary.

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