Diagnosed with Chronic Lyme Disease: Anyone else?

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.

New research may reveal why Lyme disease causes chronic symptoms for some-Check this out on YouTube. I couldn’t post the link.

Hi @tricia7, Welcome to Connect. You certainly have had a major struggle with Lyme disease. I have a niece that it took a long time before being diagnosed also. Hopefully you will get some answers and help. You should be able to post links after a short period of time. New members are not able to post links to prevent spamming and advertising. I thought I would share the video I think you were trying to share along with some new information from LymeDisease.Org.

--- New research may reveal why Lyme disease causes chronic symptoms for some:
https://youtu.be/K0Uu2nQmgrc
--- New treatment options for chronic Lyme patients: https://www.lymedisease.org/members/lyme-times/2023-summer-features/new-treatments-chronic-lyme-disease/.

It isn't unusual to be misdiagnosed at all. Some people go for years to dr's without any resolution despite wanting to get a diagnosis. Early on (30 years ago) there were no good tests and it was so easy to say that symptoms were caused by something else. It is still an issue and patients are still being told they are depressed or that they have some other pronlem that is causing their symptoms. My early 90's tick bite followed by flu like illness was diagnosed as a virus. I remember visiting the dr's office and my husband literally dragging my weak body up and down the stairs to his office. I left there feeling so unhappy about the diagnosis because I knew I had Lyme even then. I have not been cured and right now I have painful knees. They are not swollen and little is seen on x-rays but it is hard for me to do stairs and walk around as if all is well. Of course there are many more things that are a part of the disease that make life difficult. It is good that you are trying to use supplements to get healthier. It probably will help you but is not likely to permanently eradicate the bacteria. For that you could look at herbals and such. I do get constant flare reminders and not just annually. The days when I feel good enough to forget about Lyme are rare but appreciated.

Lyme put me in a wheelchair. My cerebellum shrunk. So many problems. I have bands 58 and 93.

It will take awhile for the abx to start working in your bloodstream and you may experience what is called a herx. I hope this has been explained to you. And you may need a different cocktail.
As far as neurologists are concerned, be prepared for testing and certain meds that are used routinely for neuropathy.
I’ve been on my own journey with Lyme disease since 1979. Finally properly dx’s 12 yrs later. I was a Guinea pig for non lyme literate doctors far too long. I suggest you get in touch with ILADS on the web and call whomever you want to zero in on your particular needs.

I am very sorry to hear about your diagnose. I was bitten twice in the last 3 years by a tick. I have a super dumb question if they couldn't get the tick out does this mean the tick is inside me spreading eggs all the way? I am on my first week of antibiotics but my entire body cracks and pain everywhere soecially my joints. Do we have any home made remedies. I have advance arthritis. Thanks a lot

Welcome @soniaole26, The only dumb questions are the ones we don't ask when we are trying to learn what's going on with our bodies. Hopefully this will provide some answers for you.

"Ticks don't burrow completely under the skin, but parts of their head can become lodged under the skin as they feed. They will attach to a host for up to 10 days, falling off when they are too full to cling on any longer. Tick bites are most dangerous not from the bite itself, but from the diseases ticks can transmit."
--- Bugs that Burrow Under Skin, and What to Do About Them: https://www.healthline.com/health/bugs-under-skin.

Have you been diagnosed with Lyme Disease?