Meanwhile the pain in my sternum spread into my entire rib cage and into my hips. I could barely endure the mattress touching my torso and I started sleeping in a recliner. I started getting painful, crippling hips spasms that would make me scream and writhe in agony. It got to the point where my legs were so wobbly and weak it was sometimes difficult to walk. I started sleeping sixteen to twenty hours at a stretch. It took eight months for me to get a diagnosis of psoriatic arthritis. I started on enbrel and methotrexate. The pain never went into my fingers, hands, feet, or toes. I never got the bone deformities that psoriatic arthritis can cause, but I did have some of the spinal issues. I often wondered if I had received the correct diagnosis.
Since 2005 I have been hospitalized twice for lung infections that would not go away; cytomegalovirus, that made me extremely ill for two weeks; and I tested positive for EBV (Epstein Barr Virus). I was teaching in a juvenile justice detention facility and was exposed to TB at some point, so I also went on lsoniazid monotherapy for nine months through the local health department. I never stopped taking my Enbrel injections or my methotrexate. My rheumotologist said it was fine to keep taking auto immune suppressant drugs while I was in TB treatment. So, my body was under a great amount of physical stress from many different internal avenues.
I was fortunate in that I had a very good internist doctor in my hometown and he (the most caring doctor I have ever had), at my behest, kept me working full-time with help from Ritalin for the extreme fatigue and pain meds for the bad, bad days of rib/sternum pain. This was in addition to the weekly Enbrel injections and methotrexate (both which lowered my immune system responses) prescribed by my rheumy. I wanted to work. I wanted to teach. I was fighting every single day to stay in the game. When I was given the chance I even took a teaching job overseas, but two things: my father’s worsening Alzheimer’s and the very real possibility of my not being able to continue receiving my Enbrel in the Middle East, forced me to return stateside after five months. Back home I was lucky and got a teaching position in a small school in
By October 2014 I was hearing soft music in my right ear whenever I tried to go to sleep; my brain started getting foggy like I was thinking through a wall of mist; my emotional state got to where I had a difficult time dealing with my high school students; and the pain in my rib cage was, on some days, so bad that I would sit at my desk at lunch and cry once the students left for the cafeteria. I would forget to do tasks that my admin had told me to do (it's not like I forgot and then remembered when I was told- the information was simply not retrievable). I started crying easily over nothing and I became very depressed. I have always read voraciously, but all of a sudden I was having trouble comprehending long passages of texts. Never a great typist, my typing skills became even worse. I think the depression was secondary to the fact that, by this time, I was in pain almost 24/7. Constant pain will break even the strongest person. My right leg and left arm started going numb and throbbed and burned. I was still stubbornly walking three miles about three or four times a week, and I can remember several of these late night walks where I sobbed in pain with each step as tears rolled down my face. But I kept pushing myself.
I am now able to function at about 40% to 50% of my normal level. The extreme fatigue is often off the charts (think of how washed out you felt when you had the flu and you have an idea of how very very crippling the fatigue can be- it’s not just being “tired”) and many nights I cry myself to sleep from the constant pain in my sternum and rib cage. It hurts to breathe and I become frustrated after a few days and have to let off steam so I can keep going. No medication or pain pill or hot shower makes the pain ever go away- it only dulls it enough so I can endure.
Doctors who specialize in Lyme disease are far and few between due to CDC and insurance restraints on treatment methods. The closest LLMD (literate Lyme doctor) I have found is a doctor who comes to
Due to the absence or presence of co-infections, how long the patient has had Lyme, and various other factors, treating Lyme disease can be extremely tricky and vary wildly from one patient to another. There is no one-size-fits-all medical protocol. I have not gotten to the point where I am quite ready to see a LLMD ( I really do like my rheumy and I can see where he is trying to help me), but if I don’t see some improvement by September I may have to consider that option. It would mean traveling and incurring a great deal of expense, but my health, my peace of mind, and having my life back would more than balance out the inconvenience and costs that are not covered by insurance.
Lyme disease can carry a life time of serious implications for people affected by it, especially when the disease is not treated in a timely manner. Lab tests now available for Lyme are, at best, only about 60% reliable. That’s not good enough. Not when it’s people’s lives that are being gambled with. I was lucky, in a way. When I was finally tested my results showed Lyme immediately, but I often wonder what my life would be like if I had been tested in 2001. Would I still be teaching? Would I be this sick? Would I have so much day to day pain? Lyme disease is the fastest growing vector borne infectious disease in the