I started to have additional unusual problems about 2.5 years ago, neurological problems, fingers and wrists twitching. My joints (hips) also started to ache more, but for me that was nothing that raised an eyebrow. I have dealt with chronic pain since I was 16 years old. I developed osteoarthritis at a very young age, and have since had several hip replacements as well as revision surgeries, so my hips always hurt. But this was different.
I went to my primary care doctor about the twitching, and he sent me to a reputable Neuro doctor. I met with the neuro guy and went over all my symptoms, particularly the wrist and finger twitching. I spent a lot of time at work back spacing because my fingers would fire as I was typing and I was hitting the wrong key all day. I also described terrible memory problems, headaches in the morning, as well as severe migraines on and off. I also told him the terrible fatigue was unbearable. I literally had to drag myself out of bed every day.
The Neuro doctor wanted me to have a sleep study as soon as possible. I had that done, and it revealed obstructive sleep apnea (OSA). I went for a consultation and was told that the memory issues, twitching and fatigue, and everything else were related to OSA, and I would be as good as new once I started CPAP. So I was off to be fitted for a mask, and would be back for a follow up in three months.
I complied with the CPAP therapy 100% and when I went to my follow up, I was pretty agitated with the Neuro doctor because I didn’t feel better, at all! Not even a little bit more energy. I guess I intimidated him, because he also wanted to put me on Prozac to help with my rage. I explained that if I felt a tad better, I wouldn’t be raging out right now, reminding him that he assured me that I would be feeling much better in the three month period. He sent me back for another sleep study to make sure of what? I didn’t have a clue; they adjusted my pressure 2 degrees and sent me on my way. I was completely devastated with the way I was just shrugged off, and was asked to make a follow up in another three months.
I did some through research on the internet trying to locate a doctor that specialized in Chronic Fatigue and Fibromyalgia because I was told by previous doctors that I had both. The Neuro guy that I had just seen laughed at the Fibromyalgia diagnosis, telling me that doctors will call it Fibro when they can’t find anything wrong with a patient. I located a very good doctor and waited the three and half months to see him with great anticipation. My time finally arrived and after discussing my symptoms and history for about two hours, the doctor brought me into his office and explained that he thought I had Lyme disease. I can remember to this day, my response was “what kind of a pill do I take for that?” Boy was I wrong. The doctor wanted to send blood work to a special lab in California called Igenex. I agreed. The results came back and revealed a positive on bands 31kda and 41. Band 31 is so specific for chronic long term Lyme that it was the band that was originally used for the failed Lyme vaccine.
Things went down hill from this point on, because I was so naive about what was involved in treating Lyme. I was also positive for the co-infection Babesiosis, which required a completely different group of antibiotics. I immediately started an oral antibiotic protocol along with numerous other supplements. My system was completely out of whack, there wasn’t one day that I ever woke up from sleep feeling refreshed, and I felt like a zombie that never slept. I was getting adequate hours of sleep, with none of the restorative benefit. My LLMD (lyme-literate medical doctor) prescribed numerous sleep promoting agents to try and achieve a restorative sleep. This process continued for over a year. One med. would leave me hung over feeling more tired and drugged; another would work for about two hours, and then I would be up the rest of the night. Some of the sleep agents that I took were the following: Risperdol, Klonopin, Melatonin, Lunesta, Flexeril, Zanaflex, Neurontin, Lyrica, Ambien, Seroquel, Trazodone, and I’m sure more that I can’t remember.
This period of time was my darkest days; just imagine waking up day in and day out without feeling like you’ve slept. I was going crazy, I don’t say this lightly, but the only thing that kept me in this world was the thought of my wonderful wife and five great supportive children! About six weeks after trying my last sleep med. with no noticeable benefit, I had an appointment with my LLMD. I think he realized that this appointment was different, that it was critical, that it was my last attempt to ask for anything that would help me feel restored, refreshed and a little like a human being. I had also been on Provigil for about two years. Provigil promotes wakefulness. Provigil worked great for about five months, then it lost its effectiveness to a certain degree, but I still continued to take it. It was better than nothing. I also took several prescription grade supplements to produce some energy to try and make it through my day. Often I would leave work wondering if I was going to stay awake long enough to drive the 32 miles home.
My LLMD took me into his office and told me that he was prescribing a powerful medication that he thought would definitely provide some benefit. The drug was called Xyrem. There was only one pharmacy in the country that was allowed to distribute it. Xyrem is also known as Sodium Oxybate. This is one of the popular date rape drugs of previous years. The patient takes it twice a night about 3 – 4 hours apart. I was initially very worried about something so strong, but was determined to try something to feel better, plus I had total confidence in my LLMD, so I went through the authorization process for approval.
This medication proved to be the answer to my prayers, as well as the prayers of everyone that knew me! I was literally brought back from the dead. It improved the quality of my life like nothing else had. I had less hip pain, I had more energy, and I was feeling more like myself than I had in 2.5 years. It appeared that I was on my way back!
My improved quality of life would be short lived; it seems that I caught the eye of the ever powerful insurance company. They stopped covering this prescription after five months, sighting the fact that the FDA has only approved this medication for Narcolepsy, and EDS caused by Narcolepsy. I was not diagnosed with Narcolepsy, but I did have several verifiable sleep disorders including EDS, non-restorative sleep disorder, Fibromyalgia and Chronic Fatigue, as well as OSA. It seems that it didn’t matter if I fell asleep driving killing myself or others because of EDS, but if I were diagnosed with Narcolepsy, I would be allowed to get the medication that had helped me so much.
It is interesting to point out that Xyrem is in its final approval stages with the FDA for patients with Fibromyalgia, but that didn’t help me now. Then there is the argument about allowing a medication for off label use. This happens every single day, it’s just that my off label medication costs the insurance company about $ 1.800.00 per month. I went through two different appeal processes, one with the insurance company, which surprisingly enough, I lost, as well as one more with the Maryland State Ins. Administration. I was very hopeful about this appeal, because my LLMD had provided years worth of my treatment records, as well as the LLMD’s records and notes regarding the indisputable benefit of me using this medication. I was wrong again; the bottom line has nothing to do with the patient, and has everything to do with the people in the position of power, black and white decisions. I do not have Narcolepsy, so I do not get the one medication that has helped me in my fight against Lyme disease, end of story.
I am eternally grateful to my extended family for rallying to my side and splitting the cost of this expensive medication so that I can continue to benefit from this miraculous drug. I hope and pray that the FDA recognizes the benefit of this medication and approves it for the treatment of Fibromyalgia, Chronic Fatigue as well as for people with Chronic sleep disorders brought on by Lyme disease.
I have been back on Xyrem for more than a month now, and I am able to function at work better, and feel more empowered to fight this horrible disease. I am continuing with my antibiotic supplement protocol, and pray that at some point in my life, I will beat this disease! When someone asks me, what is Lyme disease, I kindly reply, how much time do you have?
-- Dana Rolander, Virginia