I have had several requests for a post that is “Just the Basics.” Here goes.....
I was bitten 25 years ago by a tick carrying Lyme Disease. We had no idea at the time because we lived in rural Pennsylvania and ticks were a part of everyday life. The disease went into a sort of remission and never really bothered me. I would have weird little symptoms now and then, but nothing that was conclusive or that could be really nailed down.
In October of 2006 I was bitten by a brown recluse spider twice. Both bites became infected with MRSA staph infections and I was hospitalized for five days. I was treated with heavy antibiotics. It took me six months to recover. This is what, Dr. Jemsek, the specialist I am now seeing, thinks brought the Lyme Disease out of remission.
In February of 2007 I was diagnosed with bacterial meningitis and again hospitalized for five days and treated with antibiotics. Dr Jemsek believes that this was Lyme in my spinal fluid causing the meningitis. Again it took me quite a bit longer to recover than most. Being so sick, I finally had to quit teaching Yoga and Pilates at Fitness Edge after having been there for 6 years.
In August of 2008 I gave birth to a baby girl. After her birth, it again took me a very long time to recover. We were beginning to think there was something wrong.
I started going from doctor to doctor trying to seek some answers. I was told everything from, “it’s all in your head,” to “you are just getting older.” There were even doctors who thought I was just a junkie trying to get my next prescription and refused to see me anymore. We spent thousands of dollars. We sought help from a neurologist, a counselor, our family doctor, my gynecologist, a pain specialist, a naturopath and even a faith healer. We finally ended up at Mayo Clinic. We were desperate for an answer. We walked away with a diagnosis of Fibromyalgia, a list of prescriptions, and basically no hope of ever living a normal life without pain again.
Charles, me and my family just weren’t going to settle for a life of pain with no hope. We began doing research about other possible diagnoses. My mom did research around the clock, and without her, we may have never reached the conclusion that we did. We became fairly certain that I had Lyme Disease and my mother began calling doctors, friends, strangers, anyone who had any connection with the disease to find out who knew about this disease and who was treating it. By this time I was so sick I could barely function, much less care for the kids, and Charles was working full-time, so all details were left to her. She found a doctor named Dr. Jemsek who was a specialist in this area. At the same time we were introduced to a man here in Myrtle Beach who had been treated by Dr. Jemsek. After talking to him and researching the doctor, we believed that this was the doctor I needed to see.
My first visit at Jemsek Specialty Clinic was April of 2010. After examining me and sending my blood to a specialized lab in California, I was positively diagnosed with Lyme Disease. Although Lyme Disease is not a curable disease, we were just so very relieved to have a positive diagnosis, at that point we hardly cared.
Dr Jemsek is a very well respected doctor in his field and a specialist who has made great strides in treating this and many other diseases.
The treatment consists of three phases. The first phase is the optimization phase. This phase goes on as long as it takes to get a patient optimized. This means no pain and great sleep. Since I had experienced neither for six years, you might say I was very skeptical. For me, it took about 2 months of trying different combinations of prescriptions and supplements, but with their protocol I was out of pain and sleeping through the night. It was completely amazing. During this time I had several scary seizures. Dr. Jemsek’s opinion was that the Lyme Disease was already beginning to fight back against the medications that I was on.
The next phase is the IV Infusion phase. This phase can go on 6 - 18 months, depending on how a patient’s body reacts to the medication. The treatment usually begins with an appointment in DC where a central line is placed in a patient’s chest and a trial Infusion of the first antibiotic is administered. Dr. Jemsek and his staff monitor the infusion closely to make certain that there are no allergic reactions. I had surgery to place the central line on June 17, 2011 and then my first trial infusion was June 2, 2011. After that first appointment, I was sent home with instructions and prescriptions for the following month. My protocol for the first month was 3 weeks on the antibiotics and 1 week of “vacation” during which I took no antibiotics.
During the vacation week the plan is too travel back to DC to trial a new antibiotic drug and the whole process began over again. Each month we trial a new drug. Each month Dr. Jemsek looks at my progress and my symptoms report and tailors a program just to suit me. I am currently on two different IV antibiotics, three oral antibiotics and about 75 other pills.
From what we understand, the final phase is the maintenance phase. Dr. Jemsek will wean me off all the IV antibiotics, but I will stay on the orals for awhile. Eventually, I will take the orals once a week, once every 2 weeks and so on until I reach once every quarter. Since the disease has no cure I will continue on maintenance oral antibiotics about once a quarter for the rest of my life in order to keep the Lyme Disease at bay.
I am actually one of the lucky ones. There are so many out there who have Lyme Disease and don’t even know it. Lyme Disease is known as the “Great Imitator.” It attacks the brain, and therefore can attack any of the systems in your body. For me, it has damaged my joints, my muscles, my eyes, ears, digestive system, emotional, comprehension, memory and word retrieval, among many others. It has caused seizures, balance issues, and strange allergic reactions. I am currently in a wheelchair and use a walker to get around the house. It is a very frustrating disease in that you can wake up each morning with a new symptom or side effect to one of the medications. The treatment is extremely arduous, with many more discouraging days than encouraging ones. Being thankful for the good moments are what get you through the bad. Dr. Jemsek is hopeful that I will return to 85% - 90% of my old self in one to two years, but, because it has been in my body for so many years, I will never be entirely back to myself.
It is also an extremely expensive treatment, with expenses reaching $40,000 - $50,000. We have been very blessed in that our insurance company has agreed to pay a portion of the expense, and we have many friends and family who have given so sacrificially to help towards the astronomical fees, but we are still left with the majority of the cost.
So - for those of you out there who wanted the basics - I hope I answered all your questions - in a nut- sorta -shell :)
My morning began with my sweet Finley tip-toeing into my room, all dressed for school, cute as a button. She was chowing on a baggie of cheerios. I was sound asleep, the type of sleep that borders on unconsciousness, with my back turned to her. Then she whispered “mommy.” Who can resist that? I mean even the Grinch would wake up if Finley whispered to him the way she did to me. I pried my eyes open and tried to turn over to face her. I put my hand out to touch her sweet, smiley face, and she dropped half a cheerio in it. She asked if I wanted it. I said I couldn’t. (My kids are very used to the food restrictions from Lyme’s.) She said, “save it till you get better soon.” I said “when is that?” Looking over her shoulder as she left my room she responded matter-of-factly, “In 4 hours.” (She did come back later to give me the other half a cheerio.)
A few days ago I had a major episode while Robyn had a friend over. Melody and Charles were hovering around me, Robyn and Rosemary peeking over their shoulders trying to see what was going on. Robyn, so blaisé after seeing it so many times, explains to Rosemary that, “my mom’s brain is broken for awhile.” a very apt and simple explanation. You could write pages on this disease, but it comes down to that one fact - my brain is broken.
