Not all my posts will be so long, but this is an overview to let others know what Josey is going through and has in the past. Too many others are suffering without support and information. We're documenting and if
even one person will find something familiar, some hope, some support, something, it's worth it. So, read on....
Josey is my daughter and she's 16 years old. She's beautiful, witty, smart, a hard worker, athletic, and a good friend. Or she used to be all those things. Athletic is off the list for now, as is hard worker. Surviving is her main
focus now. Instead of focusing on school, church, friends, boys, part-time jobs, softball, and general teenage life, she is in bed or in a wheelchair trying to survive the pain and misery of Lyme disease. She has been sick for about four years - since at least 7th grade - but got a diagnosis of chronic Lyme at the end of 2013 after being told by doctor after doctor that she wasn't sick. Her pain was dismissed, she was accused of
avoiding school, and told by overweight practitioners that she needed to lose weight because this would solve all her problems. She had more tests run than we can count: CT scans, MRIs, x-rays, blood tests. She was subjected to treatments that were supposed to help her with her back pain, when it was
taken somewhat seriously: special stretches, physical therapy, kinesiology, spine re-alignment, massages. Nothing helped. I took her to the doctor for sore throats, ear aches, nausea and vomiting, fatigue, stomach
pain. She was diagnosed with kidney stones, UTIs, flu, viruses.
Eventually, in November 2012, she had her tonsils out and quickly developed a case of thrush. The pain medication she was given to help with recovery didn't work. Really. Lortabs by the handful wouldn't touch her misery but we realized they made her goofy and when she came off them she didn't remember anything. Then over Christmas break she came down again with what looked like the flu but just couldn't recover. One doctor was condescending to me, calling me "an anxious mother," and sent us home with a motion-sickness patch and orders to do a stool sample. No relief and lots of pain followed, so I took her back to our favorite family nurse practitioner and told her I thought Josey's gallbladder was the cause of the mystery disease. She sent Jo for a sonogram and eventually a nuclear medicine test that determined her gallbladder was functioning at about 35%. We quickly saw a surgeon and in February 2013, she had her gallbladder removed. It showed signs of chronic irritation but no stones and no sludge. Once again, recovery was hard. Lortabs were the only medication the doctor would order to help with her pain and they still didn't help. When I called to ask for stronger meds, I was told Lortabs are the only thing the doctor would consider. In other words, mom is drug-seeking and/or the doctor didin't care. Our school district offers home-bound teachers to kids who can't attend school for long periods of time, so she was able to take advantage of that but ONLY because our great nurse practitioner was willing to get her supervising physician to sign the official paperwork.
Moving on to summer 2013, Josey was still achy and having digestion problems but these were attributed to her gallbladder recovery. During July she began having severe abdominal pain so we took her back to her NP and she was sent for an ultrasound and referred to a gynecologist. Two appointments and two ultrasounds later, she was put on birth control pills in an attempt to control what were thought to be ovarian cysts. No pain meds were ever offered. Any other woman I've ever known who experienced ovarian cysts was given SOMETHING to help with the pain.
Then in the fall of 2013, she kept getting what looked like debilitating stomach viruses, and missed almost three weeks of school between August and Thanksgiving. On one of our visits to the NP, more medical history was taken and since she was having lower back pain and had kidney reflux as a small child, we were sent to a pediatric urologist. More tests. CT, x-ray, ultrasound. Guess what the diagnosis was?? Constipation. She flipped out. Begged me not to believe them. (I didn't, but couldn't convince her and figured she may as well try their meds.) By nightfall after receiving the diagnosis, she was in excruciating pain and with the help of my nurse buddy (Kristi is awesome to put up with my questions and me in general!!), I decided to take Josey to our local children's hospital emergency department. Short form: the ED staff was super and gave her a dose of Toradal, told us her abdomen was full of swollen lymph nodes, and decided to keep her overnight for observation and more tests. Once upstairs and in a room, the usual dismissing began. Six residents came to the room, mashed all the painful spots, and decided she was trying to avoid school. No tests, nothing. Sent us home mid-afternoon even after I was begging for help.
By nightfall, the pain was again at an excruciating level. Josey tried taking a warm bath to relax and instead of helping, she got worse. Sitting in the recliner in our living room, she began to weep and weakly told me she couldn't move her arms and legs. I tried to tickle her toes, kid her a little, encourage her to move, hoping she COULD move but was in too much pain to try. Not the case. She felt me touch her feet but it didn't tickle, she didn't move, and nothing would make her move. My husband and I managed to put her in my SUV and take her to another emergency department. A few blood tests and another Toradol shot later, we were sent home with a suggestion to see a rheumatologist. Josey was in despair.
I began searching for another doctor who would be willing to follow her case until the cause was discovered. The next pediatrician I took her to promised to do just that. More blood tests, a staff hard to get in touch with, and two more weeks of pain. This doctor did agree to sign the home-bound paperwork to access this service like the year before, but she diagnosed Jo with chronic fatigue. Once I did get the blood panel back, the doctor told me nothing is wrong with my child, gave her a prescription for Cymbalta, and basically told me she was done with us. Thanks. She did try to refer Josey to a psychiatrist. Now, I'm a private practice counselor and I refer to a select few psychiatrists that I trust. The one this doctor gave us is my favorite but she doesn't see pediatric patients. I knew immediately that this was a brush off and the doctor didn't even know where she had referred us. After asking for a rheumatology referral, I was given a name and called that person only to find this practitioner also doesn't see peds patients.
Desperation and what I call "poltergeist crazy mama" set in. Luckily no one saw me have my fit! I called our favorite NP group again and told them about the journey we'd been on over the last few weeks and asked if they could help at all. Thankfully, a nurse who knows us answered the phone. She asked me to get a paper copy of the lab results and any other records from the most recent pediatrician and come over ASAP. I told her the serology Lyme test for Josey had come back positive but when the western blot test was negative, we were completely dismissed. The lead NP is "out for treatments" but until arriving at the office, I didn't know she is out for chronic Lyme disease treatment. I've never been so thankful for another person's illness. Sounds mean, I guess, but if she hadn't been sick we wouldn't have a diagnosis. All the office visits, symptoms, referrals, and surgeries suddenly made sense. Putting all the pieces together made it easy for her to confirm a Lyme diagnosis. We left with a list of LLMDs (Lyme Literate MDs), a prescription for doxycycline, and orders to come back in two weeks to have blood drawn to be sent to iGenix, the premier lab for testing for Lyme. This was the third week of December. Needless to say, to those of you with Lyme experience, the Herxing began.
As a side note, the NP asked us to take Jo for a CT scan of her brain because of the awful headaches, hallucinations, and inability to sleep associated with her disease. They recommended, due to the proximity to the holidays, we go to the emergency department and tell them what's going on. The NP group called ahead to tell them we were coming. Once back, the attending physician told me none of those symptoms are associated with Lyme, she wouldn't give Jo any pain meds, and insinuated - again - that I was drug seeking. Ignorance must be bliss and rock hard, because it's so difficult to penetrate.
In the meantime, I let family and friends know we had hope and a legitimate diagnosis. My sister let a friend of hers who has Lyme know about this via facebook, and within minutes this woman called me with the name of a LLMD in Mississippi who accepts insurance. (Note: most LLMDs don't take insurance. If you aren't familiar, try to find one online.) Most Lyme patients have to travel long distances to get treatments, but we're just over an hour from this guy and we think he's pretty great so far. Right now, Josey is finishing her first month of oral antibiotics, herbals, and special diet. Two more months to go before another doctor visit, but we've called several times for information and have gotten wonderful responses from the nurses and even a phone call from the doctor.
I'm thankful for finding a doctor, a local NP who understands, and friend and family support. It's just that Lyme disease and the treatments are hard. Really, really, freaking hard. Pain, brain fog, nausea, depression, isolation, tons of meds, and now a restricted diet, combined with what will likely be at least a year and a half of trying to get better, make this so difficult for her. We're working hard to support her, encourage her and keep her focused on the goal.