Lyme Disease: Stories From the Front Lines of an Epidemic – Jesse H.

Jesse speaks:::

As far back as my teenage years (early 1980’s) I remember feeling “sickly” & having mental confusion. In my early 20’s these things got worse & I wondered if I was going crazy. Landed a career as a jeweler in a jewelry store setting stones, soldering gold- jewelry repair. I would have outbursts of anger when I didn’t get something right. This was not my nature. I am a meek, quiet person. I remember some weekends being so tired that I slept on my couch until I had to go back to work Monday morning. Over time these things got worse & I started having chronic sinus infections, muscle pains, cognitive problems (started repeating things without realizing it) , nerve problems. I went to a Dr. to find out why I “didn’t feel good”. After 2 months of tests & bills with no answers, I got mad at the Dr. & quit going. This cycle was repeated about every other year. Each time a different Dr. They would do more tests, send me to their specialists & no one could find anything. Every time one of them would give me antibiotics for one of the sinus infections I would get a little better but it would always slowly come back.

  Over the years more problems developed. I knew things didn’t feel right but it was all over & I couldn’t explain it to the Drs. I would feel like the flu was coming on & told Drs. it feels like my brains are scrambled. I really thought I was going crazy & thoughts of suicide began to enter my mind. I developed social fears & phobias. It interfered with my social life. I had a few friends but I didn’t get out & do much like other people. There would be things they wanted me to do with them or places they wanted me to go with  them. most of the time I wouldn’t go. I missed out on a lot. It made it almost impossible to try to date because girls could tell something was wrong & would avoid me. I grew distant from my family because I didn’t think they understood me. I grew distant from my church. I spent many lonely years feeling like I didn’t fit in with this world & would pray to God to let me die in my sleep. I would try to drink to drown my sorrows but it always made me feel deathly sick. Thoughts of suicide tempted me often during these times.

  Went to one local Dr. who told me that one blood test showed that I had been “exposed” to Lyme disease sometime in my past. He jarred my memory & I did remember a large bullseye rash on my lower left leg.  I was given a few weeks of antibiotics & told that was it. I knew nothing about Lyme disease. This was back before everybody had home computers so I didn’t learn anything about it. I just trusted what the Dr. said. The C.D.C. called me from Wash. D.C. I felt better! I thought it was finally over. Began to open up a little & began being more social & just being more of a normal person. My co-workers could tell a difference. Now I was playing catch-up on life. Going to the beach, rafting, fishing, trying to date, etc. I met someone & entered into a long on again- off again relationship that even became an engagement. It seemed like I might get to have a normal life after all.

  Within a few years, I could feel it all coming back. I tried to ignore it but over time I slowly drifted back to the way I was before as all the symptoms were returning. It wasn’t long after that I began the process of going back to Drs. to find out why I didn’t feel good. I would tell them about the Lyme but they would always dismiss it with a bad attitude about it. People began to not believe me. My relationship with my fiancee ended after 12 years. My friends stopped coming around. I became a loner & work became very stressful for me. I had more angry outbursts. My cognitive problems were very bad. A few Drs. found nerve damage but couldn’t tell why. I was feeling like something was slowly killing me & one Dr. even tested to see if someone was poisoning me. I became very isolated & only one friend got me out some.

  At around 38 years old I met someone on an online dating site. I think it was around 2003. We married & she became my advocate with this battle. I was ready to give up & let whatever it was killing me but she wouldn’t give up. I got more sick more often. It became difficult for me to go to work. Then it hit me hard. I would get lost driving. Places I know like going to see my grandfather & going to work. It was very scary. I began to have bad pain in my muscles & joints. Cognitive problems worse than ever before. We had been to several different Drs. One sent me to a Neuro-Psychologist in Chapel Hill. He found severe nerve damage & I was a cognitive mess. He told my Dr. this was all real, that I was very sick & even agreed with me that the symptoms seemed like Lyme. My Dr. angrily dismissed this. I got worse & thought I was dying again. I started having trouble walking & keeping my balance. Around 2007 my wife got on the computer & found Dr. Jemsek who was here in N.C. at the time. She called & got an appointment & took me there. That day I had to be helped into the building. I could barely walk, was shaking with tremors. By this time I was so sick my mind didn’t always know what was reality. I remember the horrified look on the faces of the staff when they saw me. Dr. J. was alarmed & told my wife I was dying & that she got me there just in time. He had a PICC line put in me right away.

   I had to quit working. It was hard to leave a job I had held for 21 years. Began about 6-7 months of aggressive antibiotic treatments. I thought I would die from the herxing. My wife had to learn how to be my home nurse. After 8 months I did get better- not well, but better. He brought me from my death bed to a point where I was sick & disabled but fighting the disease. This Dr. was very good & educated us both about Lyme disease & it’s co-infections. The costs of this Dr. & the treatments were so high we were tens of thousands of dollars in debt. My wife hid a lot of it from me because she knew I would freak out & have tremendous stress over it. We went bankrupt & couldn’t continue to see Dr. J. This depressed me tremendously & I felt like I had been abandoned before my treatments were even finished. I did get approved for Disability but had to wait 2 years to get Medicare. I went these 2 years with no Dr. at all, getting sicker again. I could no longer drive, walked with a cane or sometimes had to use a wheelchair. 

  Now we began to search for a Dr. again. No LLMD takes Medicare & they are too expensive for us. I became very distressed over this & thought that there was no hope for me again. We found an Infectious Disease Dr. in Greenville who was Lyme literate. He helped me a little bit at first but began putting appointments off so long I couldn’t see him but once or twice in a year. Then we got a letter saying his patient load was too high & he was trying to drop a lot of his patients. Again we had to start this impossible search for a Lyme Dr. we could afford. Went without a Dr. again for a while. Tried one local one again But he turned out the same as all the others in the past & wouldn’t believe in Chronic Lyme. We finally found a regular Dr. nearby who had been there all along but I didn’t know about him. He understands Lyme because his sister has it. He helps me the best he can but he is limited because he is not a Lyme specialist. My church recently raised money & bought me a Rife machine.

  I now am trying to survive. I suffer chronic pain. I am prescribed morphine & I still hurt. I can”t walk without a cane or walker. I am only 47 years old but feel like a sick 97-year-old. I am trying to learn how to use the different settings on the Rife machine & going through the herxes from these treatments. I feel like the walking dead. Sometimes life feels like a living nightmare. I feel like I have the flu & was is a plane crash all at the same time. Mornings & nights are horrible. It’s hard for me to travel. I miss family events. I have some family & some of my wife’s family who don’t understand & don’t believe me. This hurts a lot. Many nights I pray that I will die in my sleep. My family doesn’t understand this. I just want the pain & suffering to end. My faith in God has kept me from ending it all & has helped me learn to reach out to others who are suffering & help them with moral support if I can. I now try to focus my efforts on awareness & helping others to keep their faith strong through this.

 I forgot to add that I can’t get a positive test result on a test anymore but Dr. Jemsek clinically diagnosed me & explained about how unreliable the tests are.

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