Living as a Lymie #LymeDisease (approx. 8½ - 9½ min. read)

In late December of 2018, I started getting some pain in my body. Most of it was in my hips and shoulders, but it kind of “jumped” around my body giving me pains that felt like one would expect a hot poker to feel when piercing human flesh. After approximately three months of living with excruciating pain, and five panels of blood tests, and some x-rays, I was diagnosed with Lyme disease in March of 2019.

My first Lyme serology, called an ELISA was done on March 8, 2019 and it was positive, but the infectious disease specialist, my physician spoke to said they wouldn’t speak to me unless I tested positive for the ELISA again; which I did. Keep in mind that the tests they do for Lyme are pretty antiquated and a lot of people get a false negative, but it’s quite rare to get a false positive on the ELISA, and I got two positive results.

I waited just over a month after my first diagnosis of Lyme’s to see an Infectious Disease Specialist (IDS), and if you know anything about Lyme, time is of the utmost importance and if it’s not treated within the first thirty days, it can turn into chronic Lyme, or PTLDS …but they’re the specialists, so I waited.

The day came when I was finally going to get a diagnosis, as well as be treated for the disease that was destroying me insidiously and I was so pumped. Unfortunately, when I met with this person, my excitement dissipated quickly because they told me I couldn’t have Lyme disease because there were no ticks where I lived. Furthermore, they told me that we needed to “close the chapter on Lyme disease,” so I ended back in limbo.

Limbo was really scary because while the medical community were setting up appointments for MRI’s, rheumatologists, EMG’s, etc., my symptoms were getting progressively worse.

By the end of April 2019, I could barely walk without a cane, my left hand wasn’t strong enough to grip and hold things any heavier than a piece of paper without dropping them, and I honestly felt that my right hand wasn’t far behind.

The worst part of my symptoms were my brain fog and cognitive dysfunction...

I started stuttering first and I really had to concentrate in order to put sentences together. Then I started having trouble finding the words for things that were part of my everyday life and when I was really tired, I couldn’t form a sentence. It was petrifying.

Not to mention that my short-term memory was so altered that I was having trouble remembering what I did yesterday or the day before and sometimes I couldn’t remember what I had said five minutes after I’d said it.

The whole ordeal was absolutely terrifying because I’d read that if Lyme was left undiagnosed and untreated, it could mimic all kinds of other like Amytrophic lateral sclerosis (ALS), chronic fatigue syndrome, Alzheimer’s disease (AD), depression, insomnia, as well as autoimmune disorders like Rheumatoid arthritis (RA) and Multiple Sclerosis (MS) and I was worried that I was experiencing symptoms of AD, and I’m not even sixty yet.

Another month went by and still no one was treating me, and I was deteriorating before mine and my husband, Gary’s, eyes and I knew I had to do something - fast!

I had no idea where to start because I’m not a physician, so I went to Google, typed in something like “Lyme disease in Canada,” and I found a group on Facebook called, “LYME: OHOH CANADA.” It was a closed group, so I asked to join in and after filling in some questions about my story, they allowed me to join.

I was over the moon, but as I started to read over all the stories that sounded identical to mine, I started to cry. There were so many people like myself that were being dismissed and the worst part about that was a huge portion of the members were parents of children suffering from Lyme and like me, they couldn’t get help. Honestly, it was heart-wrenching because I just can’t imagine being a child and living with the symptoms of Lyme disease.

The first signs of Lyme are flu-like symptoms and about 30% of the people that are bitten by a tick get a rash that looks like a bullseye, but the rest of us just feel like we’ve got the flu. If left untreated, the bacteria, called borrelia bergdorferi can lie dormant until it’s host goes through a deluge of stress and for me, most of it was caused by certain members of my family attacking me once again, and on Christmas!

…but that’s a story for another time.

Once Lyme is triggered, it’s then called chronic Lyme or PTLDS and that’s when it starts mimicking all those debilitating illnesses I mentioned earlier, so I felt like I needed to act quickly.

As I was searching through the group, I saw a post about bee venom therapy (BVT) and after doing extensive research decided I was going to be my own advocate and try to eradicate this disease on my own.

Follow along as I tell my story of healing. Stay safe, stay strong and remember to BEE your own advocate!

P.S. This is new to you as well as myself, so please don’t hesitate to ask questions along the way.

Resources:

https://canlyme.com/just-diagnosed/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5872223/

https://igenex.com/ticktalk/2018/01/12/whats-the-real-source-of-your-symptoms-common-misdiagnoses-of-tick-borne-diseases/

https://www.cbsnews.com/news/kris-kristofferson-misdiagnosed-alzheimers-has-lyme-disease/

https://www.healthline.com/health/alzheimers-disease/signs-of-early-onset-alzheimers