I’m wondering if I have Chronic Lyme. I was diagnosed with Lyme in June 2020 when I was 57 years old. I had a bulls eye rash on the back of my leg which was growing. I had an unbelievable headache, burning knees, nausea, brain fog and flu like symptoms. I recalled pulling a tiny deer tick off the back of my leg about a month earlier in May. I was treated with a month a doxy which helped but I haven’t been the same since. I recovered enough to go back to work after 8 days but had to eventually stop working last August. I was too sick to do my job well.

The weird thing for me is, in June 2021 and again in June 2022 and now again going on year three of this hell, I have the same Lyme symptoms returning. Burning knees, swollen glands, headache, nausea, fatigue and brain fog. That tick bite changed my life! I always feel lousy, but this time of year all the heavy Lyme symptoms slowly come back at once.

My PCP didn’t think my symptoms were related to reactivated Lyme and thought I was rather depressed instead. I saw an infectious disease specialist who ran a couple of tests but assured me I didn’t have Lyme and said I should see a psychiatrist. I saw a neurologist and she said I should see a psychiatrist as well. I couldn’t believe it. Nobody was listening to me.

In August 2022 I passed out, hit my head and ended up in the hospital for two days. They explored for heart issues but whenever I brought up the Lyme that fell on deaf ears. I was sent home and told I was fine even though I still felt awful. I followed up with Gastro and they did diagnose me with SIBO and I was prescribed antibiotics which didn’t work.

I have now discovered I have leaky gut from the antibiotics. No one would believe me when I said I felt like my body was fighting an infection! I actually went ahead and met with two different therapists for a while because I thought I was loosing my mind. Both agreed that my symptoms didn’t seem psychiatric but appeared to be physical. Can I get a doctor to listen to me or help me? Nope.

Out of desperation I paid to consult with a Functional Medical doctor in March who ran tests that showed two markers for active Lyme. She also tested for EBV and the numbers came back really high. 150, 600, 750 when they should be under 11. I had mono as a kid and was told Lyme could have reactivated the EBV which usually stays dormant after mono. I’m working with Functional Medicine trying to heal my gut with probiotics, supplements and diet. I feel like I’m doomed as I keep finding more things out. I have had no life and have lost a ton of weight since that tick bite three years ago.

Lyme disease seems to be something extremely unusual that doctors don’t understand. I’ve read quite a bit about what people who have been infected go through and wonder if I’ll ever feel good again. It occurred to me that I might have Chronic Lyme which I didn’t even know was a thing. Getting a yearly flair up on the anniversary of the bite feels cruel. It’s such a strange and misunderstood disease. Has anyone here ever experienced this type of yearly flair up? I didn’t make the connection until today. I thought I had COVID. That’s what I thought was going on in 2020 because Lyme feels like the flu.

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