Search This Blog

Thursday, March 24, 2011

Relapse and New Treatment- Pulse Therapy

Since the fall, I have been feeling the brunt of the first true Lyme relapse that I've encountered. i ignored the pain and fatigue and ran through it, and skied through it, and raced through it, and just kept pushing. Then I embraced the Ovarian Cyst surgery, and I just haven't recovered from that. i have been on Rifampin, Amoxy, and Minocin since the fall, and I'm not getting any better. i've exempt myself from a diet and sleep and overstressed about schoolwork and projects and running for student council president for next year. Now my whole body is breaking down and I'm at the end of my rope. I've dealt with depression, passing out, nausea, cysts, inflammation, fatigue, pain in joints and muscles, sleep issues, cramps, tingling, brain fog, euphasia (forgetting words), and so much more. My headache is back full force, and with all the New Hampshire snow storms I'm suffering from the barometric scale dancing around. I have schoolwork shooting out my ears from honors courses and I find it hard to last a full day. I've only run four days since the weather has started to permit it and I feel like I've killed my legs. I'm just sore, tense, and sick. I know other Lymies feel my pain and discomfort, and I've been so concentrated on looking and acting normal and embracing opportunities that I never had when i was home schooled from the Lyme that I just wish I could be 100% forever. I'm very distressed from the depression and I'm let down at the relapse. I've tried to have a positive opinion on things, and I've relied on books and bible studies and friends and family and quotes and positive feedback and praise to keep me going this whole time. Now it's just dissolving at the seams and I feel like crying. I try not to show this side of me to the world, I don't want them to think I'm weak. I push through a lot and this is something that whether I like it or not, I will push through as well. When I returned to the Lyme Doctor a few days ago I told him this, and we decided on a new treatment plan. Dr. Burrascano from NY treats Lyme patients with Pulse Therapy. The idea is that Lyme hides in the body, and by starting med.s for a few months and either switching antibiotics or stopping, then starting again you can kill multiple forms, stages, and types of Lyme Disease. I stopped all my medicines that are pushing the Lyme into hiding, and we are waiting for me to get as sick as possible. When the bugs are out of hiding in a few weeks we won't worry about slowly building up, we will start all four abx (Rifampin, Plaquenil, Minocin/Minocycline, and Amoxycillin) at once and hit this bug like a nuclear bomb. I have hope that this will work, even though I have a feeling the herx reactions will be tough. All I need now is prayer.

Coccyx or Tail Bone Problems

Last year in January I was exempt from horseback riding due to tail bone pain that we called pilonidal cysts. The cysts and glands were all surgically cleaned out and removed and i dealt with additional hyper trophic scarring issues. Basically the skin scarred irregularly, probably from the Lyme, and was raised and painful, pulling at the tissue around it. I proceeded to seek Cranial Sacrael Therapy which massaged the tissues to soften them up, and keep a silicone 'scar away' scar patch, kind of like a band aid, on the scar which led to it ultimately softening up. By the end of summer I was still suffering from deep tail bone pain that was located at the tip of the tail bone, or the coccyx. I tried to work through it to horseback ride, but it wouldn't work. It was far too painful and I found myself consciously leaning to one side or the other when I would sit to avoid or reduce pain. I attempted to snowboard this past January, and after a few falls on the hard snow, right on my tail bone of course, I changed back to skis and gave up. After the snow boarding I had such bad pain from sitting or moving around that I returned to the surgeon. She said I could have broke or bruised the bone and sent me to an orthopedic specialist to get it looked at. We took ex rays and conclusive bone CAT scan which proved no visible break. He was not willing to do a Coccygectomy or surgery to remove the coccyx bone because he claimed it was unnecessary and would cause additional issues. I am still suffering with pain, which my Lyme Doctor claims is just Lyme Inflammation. So After my most recent Lyme Doctor Appt I picked up some Capsaicin .1% Arthritis cream made of menthol and chili peppers to try a new idea. basically i'm applying the cream twice a day to my tail bone area, and the extreme burning sensation is supposed to exhaust the nerves after a few days and reduce the pain. I have to apply it four times a day, suffer from severe burning, and wait for possible relief. It has proven to work before, but will it work for me? We will have to see. it's very uncomfortable, and painful, but not unbearable to return to horseback riding (if it works). I may be skeptical but it seems like a worthy idea, and I'm willing to try anything while i wait for my Appt. with a pain specialist.

Ovarian Cysts

Through the ski season I felt a strong rib pain that i thought was fr4om a tumble I took at a race practice the week before. It turned out this 'rib pain' that we thought was a fracture, then pleurisy, was actually a tennis ball sized (6 cm) ovarian cyst on my right ovary. It was large enough that it led me to the ER, thinking it was appendicitis, and then shocked an ultrasound technician when we discovered it was offsetting my uterus. In early February I went in for a laparoscopic cystectomy to remove the cyst. Everything seemed alright and the GYN said my ovary should be fine. In two weeks I was cleared to do whatever I wanted and had the stitches taken out, and I returned to school the following Monday. After taking it slow for awhile i was able to go skiing and my abs started feeling 100% again. I have three small incisions, one invisible one in my bellybutton, one on my lower left side along the pant line that might be the only visible one, and one in the center on the bikini line. The surgery may have been small, but was still a surgery, and threw my whole body off. I suffered with pain for a little while, and dealt with nausea and swelling at the site of the surgery. After the two week mark I tried to return to school once but couldn't make it and instead waited until the following Monday so I had the weekend to rest. I suffered with a lot of bleeding after the actual surgery, but it went away within a week and I was only left with cramps. A month later I had the worst period cramps ever, but they were followed with 7 days of heavy bleeding and then they cleared up after that. You may be asking why mine was removed when most people's burst or are reabsorbed. Mine had plagued me with symptoms for two months, was fairly large, and keeping me from school. Therefor we decided not to take the step of waiting to see if it would reabsorb. I thought I felt multiple cysts since then, and upon returning to the GYN we decided it could have been, but since she did an ultrasound and didn't see anything more, we would keep an eye on it. An option for me would be to go on birth control because it helps reabsorb cysts and reduce how many arrive. However, birth control and antibiotics both reduce each other's effectiveness and we decided instead of throwing my body off, we would treat the Lyme and put my on a diet. A few natural things we are now going to try to keep the cysts at bay- keep my weight in the lower range of my BMI, apply progesterone cream to my inner forearms mid-cycle to assist with hormone regulation, reduce caffeine, sugars, lactose, and increase exercise. We shall see overtime how this will work.

Alpine Ski Racing

Joining the Alpine Race team was one of the biggest steps I've ever taken in life. An amazing article in the newspaper one January led me to my first lesson with full rentals at Gunstock Ski Resort in Gilford, NH. I was scared, but it came completely natural to me and after my first run down the beginner's slope I was hooked on the adrenaline rush and speed. I only hit the slopes two more times that season, once with a professional to give me additional pointers and once with my aunt who lived nearby the resort and was a life long lover of skiing. The season ended with my promise that I would improve enough, no matter what it took, to race the following year. When fall hit I started talking with the school's alpine coach and getting pointer's for what it would take to be on the team. She asked me if I could stand on skis, and when I responded with the obvious answer, she informed me that was great, and I could count myself a new member of the team. It was my sophomore year now, in High school, and I'd dealt with Lyme Disease long enough to know what a great opportunity this was to push through my illness. Within my first year of ever skiing, and over three years of being plagued with a disabling disease like so, I found myself at the Gunstock Ski sale buying equipment for the upcoming race season. My family scraped our piggy banks to buy me a season's night pass, boots, a helmet, and snow pants and we were blessed to have skis, poles, and goggles given to me. I had passion for the sport that was indescribable, and a month in advance I started long distance running to build stamina for the races. Our on-ground practices showed I was also a fast learner of roller blading down the paved hill behind the school. The day of our first snow practice we all buckled our gear on, hopped on the chairlift, and climbed to the summit of Gunstock's face, greeted by a gorgeous view and even a water color sunset. Three weeks later I had my first race, a small race, and I was scared. Out of a little over 60 girls, I placed about 40th, and was surprised at my natural ability (other then a small slip half way up the course that slowed me down). People were asking for my name and when they heard I was a first timer to racing there jaws dropped. I was a superior natural. In between practices and races I had major issues with Lyme Disease, and even Ovary problems that could have led to me to lose my ovary at one practice, but I pushed through with determination and love for the cool air. The highlight of my season, a time when I knew all my hard work and passion boiled down to raw talent, was the lakes region invitational race at Gunstock. Being my third race ever, and plagued with a 6 cm ovarian cyst, I expected it to be possibly my last race of the season. I carved up the slopes that day, and placed within the top 25 for the GS race, and number 19 for the SL race. Never did I think I'd accomplish such a break through that day. If it wasn't for the opportunity just a year before, where Gunstock provided me with the opportunity to try the sport for free, a full Mountain Magic Pass in that 'Learn To Ski Free Week', then I wouldn't have experienced such a miracle. Gunstock provided me with the most incredible accomplishment I have felt so far, at just 15 years old, and I hope to pass the encouragement on to many others. From bed ridden to racing down an icy slope, Alpine Skiing is the best thing that has ever happened to me.

A Relapse in Time

The fatigue came a few weeks after I had hiked to the second tallest mountain in NH one day in Mid-August. The first week in September I returned to school after a long five day weekend in Upstate New York which was utter paradise and a dream come true. Then the headache started a week later, and my stomach began to beat me up. My neck started to ache, and my whole body wanted to sleep. I spoke with my economics teacher about joining the High School Alpine Race Team, and I set my mind to train for that. My Lyme Doctor encouraged the exercise, but my body didn't. However I stopped coming off my med.s and stayed on the final one with a plan to go back on them since I was feeling worse. Before I even started to go back on the second antibiotic again, I developed severe depression. All the classic symptoms, fatigue, mood swings, random bouts of tears, wanting to give up, etc were pounding me into the ground. I was told to exercise, saw a chance to train for skiing, and started running daily with a friend. That was difficult, because i hate running, but i'll save most of that explanation for another post. I knew I was relapsing, but skiing was coming, and I had to train, and school was full swing, there was no way I was going to accept it. I stayed in denial.

Catching Up

I have not been on here in a little over a year, and I'm sorry to my followers for that. The next series of posts will be an attempt to catch everyone up on what I've been dealing with. I haven't had the brain power to post but I'm going to suffer through it for now. Here goes, starting with a quick run over of last summer. Basically, last year at this time, so around March, I started on four antibiotics. I had been on three of which I don't recall which ones (I think Plaquenil, Biaxin, Amoxy) for three months since the beginning of January, but they didn't seem to really do too much more than any other treatment I'd been on. That March was a big month for me. I started on Amoxy, Minocycline, Rifampin, Plaquenil and the usual Cat's Claw, Artemesia, and Andrographis herbs. My pills numbered in the sixties per day, but I just kept chugging. By May, I had never felt so well in my life. I was back to a full swing teenagers lifestyle, the tail bone surgery was healed 100% and the hyper trophic or raised scarring I had was softening up (I still have tail bone pain), even my headache that I'd had for 2 1/2 years with no relief, had subsided. On return to the Lyme Doctor in June we decided I was cured, the 'C' word, and started to take me off med.s two months later. That was sure great, and I felt amazing, even accomplishing a hike to the top of Mt. Lafayette, the second highest mount in NH, in August. As golden as things felt with full time school around the corner, a new boyfriend who took the cake, and health, things started to go back down hill that fall. At first I didn't want to admit it, but I have accepted now, month's later, that I've fully relapsed.