I can’t believe I haven’t written in 4 years. I stopped writing after St. Georg. I was better and free from Lyme. I didn’t want to be a part of the Lyme community any longer. Sure I’d post comments occasionally on my Lyme groups but even with those I tried to limit exposure to Lyme talk. Lyme was so hard and consumed all of my life for so long that I just wanted to close that chapter and move on. I didn’t want to look back in any way.

Unfortunately life had other plans. Lyme had re-entered my life.

It was some of the hardest news I’ve had to face. Lyme destroyed my life once. I thought I was done with it. I thought I could have a new shot at life. I could forget the damage, forget the hurt, forget the treatments. All of it I wanted gone. Now here I am staring down the same barrel as before.

After St. Georg I needed my healing time and rest which unfortunately I didn’t get because of health issues with my husband. Despite that I was healing just not as fast as I had hoped. I spent years trying to recover from the damage Lyme and treatment had inflicted on my body. I was left with so many battle wounds that I needed to heal and it was going to take its time.

Flash forward to 2023. I had moved from Maryland to Maine. I was living in such a beautiful place. Life was life. I was still struggling with my mental health. After years of having my brain eaten by bacteria and a strong familial history, and the career I had been in, my brain was wrecked. I tried as hard as I could but I just wasn’t getting better and I didn’t know why. I had been reinfected. I found a tick buried in my throat and I had prayed so hard that I wouldn’t get Lyme again. I was wrong. I tried to find treatment and all I could come up with was a mostly holistic practitioner. We tried to stabilize my system and then did 30 days of 5 different antibiotics daily. It was horrendous. My mental health took a hard hit. I wasn’t making sense, I was crying, I couldn’t function during that time. That tick, that stupid little tick had turned my world upside down again.

I continued on through life. Praying the antibiotics had worked this time and things would be different. Had I caught it and treated it early enough to not get it? How wrong could I be? I kept going on with my normal everyday life pretending I had escaped Lyme this time.

2024 came and after a near death infection, my husband and I made the decision to move to South Carolina to be close to my in laws in case my husband got another infection (he’d had 2 previously) so I didn’t have to make the call saying their son was dying. I wanted them to be close for their son. Even though I had sworn to never live in the south for a plethora of reasons. I did and still do hate it here.

Throughout 2024 my health continued to decline. I was racking up new diagnoses again. Getting back on more and more meds. In the back of my mind I knew it was Lyme but I was still in severe denial. I didn’t dare speak to anyone about it or even confide my fears because that would make it too real. It put Lyme back in the forefront of my mind. I didn’t know what to do this time because I’m just too tight with money to fully treat it again. Germany, as of this writing, is not an option.

Let me say that I was never CDC positive with Lyme. I had 4 out of 5 bands on the Western Blot. But after seeing 2 world renowned specialists I was diagnosed with Lyme. There is no one definitive test for Lyme. The accuracy on the Western Blot and ELISA is not effective. There are over 300 bands for Lyme and the CDC only tests for 10 of the 300. Instead Lyme needs to be diagnosed by a Lyme Literate Medical Doctor (LLMD.) It’s a collection of different tests, symptoms and ruling other things out. I have not been tested for coinfections this time. Even those tests (generally most tickborne tests) for coinfections is not accurate. Previously I had 3 Bartonella tests done in 3 weeks and 2 came back positive and one negative came in the middle test and I’d had no treatment at that time.

All the signs and symptoms are there again. Everything from the first time. I haven’t been officially tested again as I don’t trust the tests but everything is pointing me in the same direction. I’m still very educated about Lyme and its coinfections. Despite my protests about remaining in the Lyme community, I always kept a foot in the door to be able to help others. I stayed in touch with new treatments.

My brain and my body are slowly deteriorating. My mental health is the worst I think it’s ever been, although I’m not hallucinating yet. It’s like I’m stuck in this crisis with my CPTSD, anxiety and depression and I can’t pull myself out this time. I feel like since Lyme spent many years building and growing and burrowing itself in my body that this Lyme is just going back the “good old hiding spots.”

It’s time to find treatment again. Nothing I get in the US will at all be comparable to Germany and the results I could and did have there. But I have to do something. I can’t bury my head in the sand any longer and just hope it away. It’s going to be difficult in the south. There aren’t many LLMDs here in South Carolina and even in the surrounding states. I don’t have a LLMD pointing me in the right direction this time. It’s like pulling straws and hoping I don’t get the short one.

This is soul crushing to me. I lived with Lyme for 14 years before I got my diagnosis. I will not go through that again. I can’t do it all over again, the way things happened the first time. I”m scared in a way I wasn’t the first time, when I had no idea of what was to come. This time I know in some way, shape or form what is coming for me and what I must endure again.