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My Lyme Story

Writer's picture: Jami JoeJami Joe

Updated: Nov 6, 2024

It seems like yesterday when everything began, well ended really. In January 2009 I went to the doctor for pmdd symptoms. I had been struggling with severe cycles since high school and the dr thought that putting me on birth control would help ease the pain. She put me on Yaz (which was later pulled for killing women) but at the time I didn’t know any better and did what the dr suggested. (We’ll come back to why this is relevant later) 


In February 2009, I went to Grand Cayman with my boyfriend and some friends and while there I ended up collapsing in a shower with my muscles atrophied. At the time we had been out in the heat snorkeling all day and since we were visiting friends who were in med school, they checked me out and dismissed it as low sodium, and dehydration. They fed me some saltine crackers and electrolytes, and I went to bed. Overnight into the next day I had extreme vertigo. Fast forward to our return home, I got the flu really bad. Only time I ever had the flu actually.



Fast forward a few more months and I began having aches and pains in my joints. Mainly my wrist and knees…both of which had been injured when I was younger and I thought maybe the stress of late nights at work and breaking up with aforementioned boyfriend were just causing the issues until…October 27, 2009 when I woke up to my left knee completely blue and the size of a small basketball. I couldn’t walk and it hurt to move it at all. I was living in Tallahassee at the time and I called my ex-boyfriend, who was at work just up the street to take me to the hospital. When we arrived at the hospital, they immediately questioned my exercise routine, ordered x-rays to see if I had torn my meniscus and then they drew fluid off my kneecap. If anyone has ever had fluid drawn off their kneecaps I can assure you it is not a pleasant experience. All the tests came back negative and there was no infection in the fluid so they sent me home to ride it out.

*Similar google photo. Not my actual knees.

The next day my right knee matched the left one and then the swelling begin jumping to other joints like my elbows, wrist and my neck. They sent me to a specialist in Panama City. At this point no one seemed to know what was going on. I was in a wheelchair. People were really concerned about the big C word…


But we still didn’t have any answers. It was now the second week of November and I had to go out of town for an event. I accidentally left the birth control medicine that I mentioned earlier back at my apartment in Tallahassee. I was without it for about 2 weeks and suddenly the swelling started to subside. I got back home after the event and started taking it again and the swelling started again. The only logical conclusion to me at the time was the medication was causing this. So I stopped it again and spent the next few months back and forth to specialists. I was put on multiple medications including a chemo pill even though no one knew what the issue was. I spent my 25th birthday puking on the couch and waited for my appt at Shands. 


When I finally made it to Shands they were focused on diagnosing me with Rheumatoid Arthritis. They x-rayed my hands and wanted me to return for more x-rays if the swelling episode happened again. At this point I was mentally, physically, and emotionally exhausted from all the back and forth so I asked the Dr. if I was dying at a faster rate than anyone else. She replied that she didn't think so and it was then I informed them I wouldn't be back.


Over the next year I struggled with muscle and joint pain, mysterious morning sickness, extreme fatigue, swelling, and skin infections. I just assumed it was something I would have to live with forever so I just dealt with it. When I was finally able to function somewhat normally, I needed a change so I decided to move away from the FL Panhandle and go north to a place I had never even been before...Nashville, TN.


When I arrived in Nashville I didn't have a job but I figured I could wait tables to get by. I pulled into my apartment at 10:30 on a Thursday night. I got on Facebook to post that I had made it safely and I saw an ad that Puckett's Grocery, a local restaurant was hiring. I went in the next day, got hired and started training that Sunday. Fun fact...The first person I met at Puckett's (outside my interview) was Craig, who as you know became my husband 2 years later!


After being in Nashville for a few years, and getting married, I still had some ongoing fatigue issues so I joined some Natural/Holistic Facebook groups. I kept seeing posts about Functional Medicine and a place called Sanctuary Functional Medicine in Franklin, TN. I scheduled an appointment and became a patient of Dr. Potter sometime around 2016/2017. He ran soooo many tests but I cannot explain how different it was. The first time I met him, he asked to start the appointment with prayer. From that moment on I knew I was in the right place.


Over the next 2 years we began observing and supporting all of the systems of my body. If you know anything about Lyme it completely attacks every system in the body. Among others, my digestive, endocrine, nervous, lymphatic, reproductive and even skeletal had been affected but keep in mind at this time we still didn't know what I had. We knew everything was out of whack but still no idea what was causing it.

It was now around 2019 and I was suffering from severe headaches and back pain. This had been going on for several years too. While the joint and muscle pain could be attributed to the Lyme, I had always thought the issue was from a high school cheerleading injury. The pain was progressively getting worse so I began seeing a local chiropractor. When he ran the initial x-rays he asked if I had been in a serious car accident or had a major fall...in his words..."like off a roof?" I'm sorry what? I had never had either happen and I explained the old cheerleading injury but he insisted that couldn't have caused what he was seeing. Regardless of the cause my neck and lower back were definitely damaged. I began spinal decompression therapy immediately.


At my next visit with Dr. Potter I mentioned the chiro visit and showed him my x-rays. He instantly said "It's Lyme". He then said he had another test that he wanted to run and that the reason he hadn't ran it yet was because it was very expensive and not covered by insurance. As soon as the results came in it was positive for Lyme, and the co-infections Babsesia and Bartonella. Lyme eats soft tissue in the body so when Dr. Potter looked at my x-rays and saw the tissue between my vertebrae depleted, it clicked.


I have never been so excited to be diagnosed with a disease. It was freeing and validating. All the years of being told it was in my head, or I just needed anxiety medication... now I knew I was right. Something WAS wrong. As happy as I was, I was angry because I had been tested for Lyme disease 6x prior to this final test. ALL of them had came back negative. Lyme is known as the 'great imitator' because it mimics so many other diseases but regardless of that, mainstream testing like the Western Blot or ELISA are often unreliable and don't always detect the disease. Furthermore I don't know how multiple doctors missed it as I had told them from the beginning I was bitten by a tick back in 2008/2009, and if you google knee swelling or nearly any of my symptoms one of the first things that pops up is Lyme disease. All of that aside, it was now time to work on healing as best I could.



I was placed on a plethora of supplements and 16 weeks of amoxicillin and azithromycin. This was not an easy task. Shown below is just my morning haul. I had more to take at lunch and then again at dinner. There were charts and spreadsheets, schedules, and alarms. I had to learn to show some grace to myself because there were days I simply could not keep up. Lyme had depleted so many vitamins and minerals and it seemed like I would never get back on track.


It took over 12 years for me to get a diagnosis. Lyme Disease is the fastest growing chronic illness in the US. I encourage everyone to educate themselves on this disease. It's now 2024 and while I am not 100%, my toxin levels have improved greatly. I go in for labs multiple times a year and while I am still required to take several supplements a day its nowhere near what it was right after I got diagnosed. I can tell a major difference in where I am today and where I was a few years ago. There's still a hill to climb but I'd like to think I'm at least halfway up it now.






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