Maybe I Am Crazy--Eric Rutulante

 

Seven months ago was my 36th birthday. Plans for dinner with a friend, followed by a softball game. I was looking forward to a nice relaxing birthday. Before dinner I suddenly got a bloody nose, something I hadn’t had in a while. I could feel my sinuses and ears hurting. I told my friend I was sure I’d wake up with a sinus infection the next morning. I also said that something just didn’t feel right in my body.

As predicted the next morning I woke up with a real monster of a sinus infection. I called my doctor’s office (this was the first in a series of communication breakdowns with the doctor’s office staff and my doctor) and was told to go to Urgent Care because there were no openings. I made my way there and was diagnosed with my second or third sinus infection of the allergy season, which had only just begun.I spent the next two days in bed, crawling out on the third day for my birthday celebration at the city’s annual Tulip Fest. I was very weak, and had to sit through most of it, but it was nice to be out and with friends. I ended up throwing up before we left. I figured it was the antibiotics, and so much physical exertion after being sick.

On Monday I went back to work, and slowly recovered from the sinus infection while finishing my antibiotics. They had given me a z-pack for the infection. What I didn’t know was that starting the antibiotic was probably creating a herx reaction, long before I would ever find out what a herx reaction was. Zithromax is one of the antibiotics used to fight Lyme disease, so the medicine probably began to kill the Lyme bacteria. (When the bacteria die, they release toxins into the body, causing symptoms to worsen.) At the end of the five days, I didn’t feel all that great, but figured with time I would.

Tired of Complaining--Melisa Hodges-Young

My name is Melisa; I am a daughter, a sister, a granddaughter, a niece, a cousin, an aunt, a wife, a mother and a friend. I could be someone that you know.

People tell me all the time I "look good" but they aren't there in the morning shower when my day is greeted with the handful of hair that comes out while I shampoo - and that's only the shower; not the drying and brushing or the loss during the day. I know so many other people are losing or have lost so much more than this and every day I tell myself, "Melisa, it could be so much worse," it doesn't stop the pain of seeing the change though. The other external change I have is with my veins and thinning skin. Many of the symptoms are internal though; you don't see them and I get tired of complaining.

This started 8 yrs ago for me. We are in Southern Ontario and I was out pheasant and turkey hunting with my husband. Although we wore bug spray, each time we returned home and took off our outer clothing, we would find moving ticks on each other - sometimes as many as 4 each. We knew nothing about Lyme disease or what ticks and other biting insects could carry. In May 2002 my husband noticed a rash on my lower back after I'd showered one morning - it was about 2-3 inches long by about 1-2 inches high (it gradually spread out over the next months). I do not recall it being itchy or really bothersome - just thought I should go see the Dr. I started feeling very unwell and then had some very painful pelvic pain. I didn't associate it with the rash but, we had been trying to get pregnant and that was my first thought.

Waltz of the Regiments--Lindsay Culbert

Thirty-four bottles in all line the top shelf of the desk where I am typing right now. Omnicef, Levoquin, Septra, Minocine, Flagil, Rifobutin, Adderall, Paxil, Neurotin. Orange relics of my disease, plastered with red and yellow warning labels. Do not crush. Do not take on an empty stomach. Take with a glass of water. May cause dizziness. It is an endless, regimented waltz of pills, like those dance marathons in the 1930s where contestants were competing for a decent meal and some cash to live on but instead had to be carried off on stretchers from exhaustion.

My case of chronic Lyme Disease is not really as serious compared to other peoples’. I at least have some hope of relief from the monthly cycles of poison ingested into my body, others are not so fortunate.

Imagine Being Sick for Years and Years--Donna Falcone

Imagine being sick for years and years, like having the flu … almost but not quite. Imagine having widespread muscle pain, and pain that moves from joint to joint. Imagine routinely forgetting your own phone number, and having to look at an envelope you received every time someone asked you to verify your address. Imagine sudden explosive fits of rage and uncontrollable bouts of crying, neither of which are typical for your temperament. Imagine that you cannot remember your wedding or your best friend from college or whether or not a relative you loved has died or not. Then imagine that your doctor tells you that you there is nothing wrong. You must be depressed. You must not be getting enough sleep. After a few years things change in him. Your doctor says you have fibromyalgia, and you are happy to finally have a reason for all of your suffering… but you soon realize that from that moment on everything that goes awry is attributed to the mysterious fibromyalgia.

Now imagine that you finally accept this diagnosis called fibromyalgia. They convince you that it won’t progress… that it is a cluster of symptoms caused by over active nerves. But you do get worse… you lose you hearing, you lose your career, your pain increases and decreases randomly. Imagine crushing fatigue, stabbing nerve pain, and the feeling of glass stuck in the soles of your feet. Imagine your forearm shaking uncontrollably. You think you must be crazy. You think you must be dying. You think you just need more sleep. You do everything you can… you eat right, you exercise, you avoid chemicals and over use of medications. But you keep feeling worse. Doctors test you for thyroid, RA, and a host of other diseases, but your labs are always normal. It must be the fibromyalgia. Knuckles swell and hurt and they say you have osteoarthritis, but suddenly the swelling and pain goes away from your hands… seems to move from knee to knee, elbow to elbow, without reason… seems to invade your hip on the right but by the time you get to the doctor it is now on the left, or in your foot. You cannot bear to be touched or tickled, and some days you avoid hugs. Everything hurts. Imagine you are talking with someone who is looking at you cockeyed, as if they were waiting for something, and you realize that YOU must have been talking because it’s now your turn again. Imagine wondering if you are officially insane. It must be the fibromyalgia.

Fighting With Insurance -- Dana Rolander

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

I Don't See My Friends Anymore--Caitlan Tiszai

In our last post we heard from Jennifer Tiszai. Today we hear her 12-year-old daughter's Lyme story.
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One and a half years ago I got Lyme disease without even knowing it. I was a very nice, and energetic 5th grader who was new at school. I’ve moved 9 times in my life and have never been to the same school for two years until I moved to Plymouth, Indiana.

I was so happy… until December. I started feeling so weak and tired all the time I had to go to the doctor almost every other week. Finally I got so sick I had to drop out of the fifth grade and had to be home-schooled for the rest of the year. The doctor thought I had mono and that’s when I got my first blood draw. I went to the doctor more and more times because I still wasn’t feeling better, it even felt like I was feeling worse. But more doctor visits also equaled having more blood drawn. One time I had so much blood drawn I almost fainted which has never happened in my entire life (I am not a fainter) and on top of that I almost threw up. Yuck!

Finally a test came back that said I was positive for Lyme disease. I was on so many medications and it felt like I didn’t help, but when the next school year came around I thought that I would give school another try. It felt like I was cured when I started the sixth grade. I even tried out for volley ball and got in and I loved it. But as I started it got tiring and hard, but I tried my best to stay in there.

But eventually we found out that my mother had Lyme disease too. It was even harder and we got so sick that we had to go out to California and stay with my grandparents for 4 months from November to February. But at least it was always warm and we went swimming every week.

I can barely go outside anymore. I don’t see my friends anymore. We’ve had to move and that’s been hard. It affects my activities and what I can eat. I had to quit my first job picking strawberries because I was too weak to keep working. It scares me thinking about the future and wondering how long I’m going to be sick. With my mom being sick too, sometimes I feel like I’m on my own.

I still have to take my medication and I am being home-schooled again, but at least it is for the best. And that is my story for Lyme disease. I know sometimes it feels like no one knows how you feel but no matter what God will always be with you because he loves you and created you for a purpose in life. It will be a challenge to get through this but nothing is impossible when you have God at your side.

-- Caitlyn E. Tiszai, Michigan