May Is Lyme Disease Awareness ~ Here’s My Story

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In 2007 I was awakened from a dead sleep with dizziness, nausea, extreme anxiety, and a strange buzzing or vibrating feeling all over my body. Within 12 hours I began throwing up and couldn’t find the energy to do much outside of my bed. I was running a low grade fever. My body could barely relax and I kept getting startled awake hundreds of times a night. It was like my nervous system was on fire, mixed with a severe case of the flu.

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Finally, someone suggested that I had vertigo and to go to the emergency room. They gave me a pain shot which made me feel worse. I have no idea why they treated me for pain. They ran lab work for what… I don’t know. Then proceeded to tell me that the nausea was “stress”. After about 2 hours, she finally checked my eyes and diagnosed me with vertigo and sent me on my way but not before telling me in a somewhat comical voice, that her best friend was on her 6th month of extreme vertigo. That irritated me and terrified me. How do you live your life with extreme vertigo?  It also worried me because I just knew in my gut that something else besides the vertigo was going on. The weeks went by and no one could figure out what was wrong with me besides the vertigo. Not the ER, not my MD, not my PA, my OBGYN, or my Naturopath. Test after test was inconclusive.

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The vertigo eventually subsided, but not 100% and it took 6 months before I felt anywhere near like myself. I had to stop volunteering several hours a day at my son’s school, something I had been doing for his entire life. I began to change my diet by eliminating dairy to see if that would help with the nausea. I also had my hormones checked and found out my progesterone was very low and started bio identical progesterone cream. I slowly started to feel somewhat “normal” again, but over the next two years began to deal with a lot of joint pain, severe neck issues, my feet were sore when I got out of bed in the morning, my hips hurt, I was still dealing with that nervous feeling, and I just never felt completely healed. Kind of like I was living on that cusp of just coming down with something.

I was run down, tired, and worried.

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In 2009 two years later, we were on a big family camping trip in Montana when I started to get the chills. Earlier that day, I had had a cupping session so we figured I was having a difficult time with detox. I was seeing a naturopath and we were having problems treating my liver. It seemed everything detox related we tried, made me very ill. By the next morning, I woke up in our trailer severely ill. My entire lower back was on fire, all of my joints hurt. I was in enough pain to cry and to have to be taken home. By the next morning, I knew immediately that I was having a relapse of whatever happened to me in 2007. Except this time I was worse. Way worse. I was bed or couch ridden the majority of the time for about 3 weeks in the beginning. I lost 25 pounds in a month and a half. I had all the same symptoms as I did in 2007 except the list was growing. Now, half of my face felt tingly and slightly numb. When I touched it, it caused my ear on that side to ring loudly. Both of my ears ringed horribly at night. I was sweating profusely all the time. We tested my adrenals and they were taxed as well. I had to quit my job. I began getting shingles. I had shingles every two months for a year and a half. In fact, I felt sick for an entire two years.

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During that time I increased my vitamin D3 which seemed to help build my immune system slowly. Quitting my job and trying to eliminate as much stress as possible also helped. I not only had eliminated dairy, but I stopped eating gluten as well. When I was able to get rid of the dizziness, I got immediately out of bed. I couldn’t stand it. So I hiked. Even when I felt like death, I hiked. I wore headphones and sang along with my iPod as I hiked. Sometimes I cried all the way up to the cedar forest. When I couldn’t hike I used the treadmill and I often prayed non-stop the entire time I was on it. I’m a fighter. Even when I don’t know what I’m fighting. I just knew that I had to focus on anything and everything that made me feel even slightly better. Again, I never felt completely healed, but  I was able to live life in a way that I could live with as somewhat, “normal”.

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Fast forward to the summer of 2013. We had moved to New Hampshire and several months later were enjoying a summer evening on our neighbor’s porch. Although I used bug spray, I went home with at least 15 mosquito bites on each of my legs. Within 2 days they were oozing down my leg and I was throwing up. The bites had taxed my immune system. I figured I had the flu. The second week, I woke with vertigo. Again. I was terrified because I knew what was coming. I could feel it. And if you’ve ever been severely ill and had absolutely everyone test you and poke you and prod you and tell you, “I don’t know,it’s a mystery”…you know the dread and fear I was feeling. Plus, we were 3,000 miles away from home and anyone we knew. My husband’s job was very demanding and we only saw each other maybe 7 days a month.

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After calling two doctors who wouldn’t see me because I was a new patient and didn’t have all of my medical records, I finally got a hold of one who agreed to take me on that day. She treated me for vertigo and sent me on my way, but not before I explained to her that I had been sick since 2007 and something was very wrong. I told her I needed someone who would try to get to the bottom of it with me, and she was happy to do it. I cried floods of relief all the way home.

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By week 3, I was seeing a physical therapist for vertigo exercises, which made zero difference. My blood pressure was through the roof. My doctor wanted to try Xanax for my blood pressure to see if it was stress. That didn’t work either and after 3 days I stopped because the last thing I needed was a life spent on pharmaceuticals. I felt dehydrated regardless of what I drank, had ringing in my ears, severe morning nausea and diarrhea, major muscle fatigue, severe heart burn, heart palpitations, anxiousness, ongoing headache, numbness in toes, high pulse. She started me on blood pressure medication.

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By week 4, all my symptoms remained. I stopped the PT because it wasn’t working and the PT therapist kept telling me all I needed was to go walk by myself without my dogs. Enter a bunch of questioning trucker swear words here. I was infuriated. She was an idiot. She laughed at me twice and patted me on the arm when I told her my symptoms. I called my doctor and told her I couldn’t stand the PT and I was done. My knuckles were like big knots and my hands were incredibly weak. I began having severe migraines. Week 5, symptoms still remained except the BP meds were finally beginning to lower my blood pressure. I began having shingles outbreaks again. I had terrible deep chills and sweats that only a hot bath would stop temporarily. The anxiety started to subside a little. The doctor tried to diagnose me with Fibromyalgia or Rheumatoid Arthritis but I wouldn’t allow it. I knew something else was wrong.

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By Week 6, the dizziness subsided but I began having severe joint pain and bone pain. My shins felt like I had shards of metal sticking into them. They ached like the most severe growing pains I had ever felt. My whole body felt like it had severe period cramps. I could no longer hike or go on long walks. It took all my energy to walk up the long flight of stairs to our bedroom. I could only accomplish a few tasks a day, sometimes getting ready for the day was all I could handle. Then, I would turn on the fire and lay in front of it for most of the day and sleep because I was freezing and had a level of lethargy words cannot explain. Maybe it was a blessing that my husband had to travel so much. I simply would not have been able to keep up with everything had he been home all the time. I started getting blisters on the roof of my mouth. My toes on both feet were numb. My hands were tingling constantly. I had such severe neck pain I rotated between a heating pad and ice packs all night, every night.

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During this time I was in contact with my husband’s cousins wife. She was diagnosed and struggling with severe late stage Chronic Lyme Disease. At that point, she was in a wheelchair and doing intravenous antibiotics. We had an online pen pal relatioship and talked daily. When I listed my symptoms she said, “April, you have almost every single one of my symptoms. You need to call your doctor and get tested for Lyme Disease.” So I did. The doctor look startled. Like she was upset with herself for not considering it earlier. The test came back positive.

Hallelujah! I didn’t know whether to weep because I was so thankful that I wasn’t completely crazy and the world’s worst hypochondriac, or feel absolute dread because I knew how dangerous and even more debilitating Lyme Disease could end up being for me. Finally, an answer to what I had been battling for the last 6 years of my life.

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On week 8 the doctor started me on antibiotics and I believe my first wave was three weeks. By week 10 I felt a pretty significant difference in energy level and although all of my symptoms remained, they were reduced in intensity. Then I did another three weeks which eliminated many of my worst symptoms like major fatigue, chills, nausea, and migraines. Still wasn’t feeling back to normal, but at that point, those improvements felt like a miracle! During those several weeks I buried my head in my computer for endless hours researching everything I could get my hands on concerning Lyme Disease, Chronic Lyme, and chronic illness. It was a real eye opener. I joined several private Lyme groups which were also tremendously helpful with information and support.

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A few months later we decided to move back to our home town where it turned out that my doctor’s new physician’s assistant was from New England. That was a major blessing because she is more schooled on Lyme Disease than the average doctor in this state. We did more testing with a  very expensive lab that specializes in Lyme Disease testing and I received another positive test. With all of the controversy over the CDC providing inaccurate testing and test results, lying about the incidence and prominence of Lyme Disease, it was important to me to spend the extra money to make sure I knew what I was dealing with. We also tested for co-infections in which I tested negative. She said it’s unlikely that I don’t have some co-infections, but like the Lyme bacteria, they aren’t always easy to find.

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The Lyme Bacteria is a super bug. It forms a bio film or cyst to protect itself. This is why it’s difficult to test and difficult to treat long term. The best defense to lingering issues is to seek treatment immediately upon being bitten. If a doctor argues that the infection isn’t passed until after 48 hours or even 24, the doctor is wrong. They have now done studies that prove that once the tick is attached, it begins transferring.

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I sat with the new PA and discussed the research I had done. She was patient and truly listened. She said she would read anything I brought to her, including books. We discussed options and she is completely open to following my lead. My choice over the last two years has been to only treat with antibiotics when I have a flare. I wait until it’s at its peak, and then we pulse with antibiotic treatment for 3 weeks. I believe I’ve had to treat 2-3 times in the past two years. It works very well for me. I also added high quality fish oil, extra probiotics, curcumin, digestive enzymes, and took the majority of grains,nuts and seeds, white potatoes, and legumes out of my diet. I’m able to indulge now and then, but in the beginning I completely abstained from those things for more than a year. It made a tremendous difference in joint pain, headaches, and fatigue.

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There are many Lyme Disease treatment options and philosophies. They are different when dealing with a new infection or an old infection. While I had and have many common Lyme symptoms, each person’s experience and how their body deals with it can vary. I have been unable to find any concrete proof that people who weren’t treated immediately can be healed completely with antibiotics or any other treatment.

The agreed upon goal for most people who deal with Chronic Lyme is to get it to go into remission by boosting the immune system and battling the side effects daily.  After working in a Naturopathic clinic for many years, I know the importance of gut health and how it is the epicenter of our immune systems. I didn’t want to ruin it further by taking multiple types of antibiotics and other pharmaceuticals for a minimum 3-5 years straight, which is a common late stage Lyme treatment. I know that there are tried and true natural options for healing the body and boosting the immune system and I am willing to experiment with that along with pulsing with antibiotics only when I feel it is absolutely necessary. At this point in time, I have no plans to do long term antibiotic treatment or intravenous antibiotic treatment and I also keep my supplements to a bare minimum. I have found that many of my health issues can be managed well with diet, exercise, and simple supplements.

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Fast forward to today…9 years after my first flare. Over the past 5 months my health has improved greatly. I have my wonky feeling days when my body raises red flags and says, “Slow down and rest!”  I’ve taught myself to understand my body and to listen to it carefully.

Over the past year I’ve placed a large concentration of my efforts into my immune system, lowering inflammation, and eliminating as much controllable stress as humanly possible. The rest, I leave up to God. I am a fighter, I work hard to keep a very positive attitude, and my goal is always to focus on the good while fighting the bad.  I’m taking each chapter as it comes. I no longer worry about the “what ifs” because no one can control that and it stops me from enjoying the now and living my life to the fullest. People often tell me they admire my attitude and my strength. It pleases me immensely that they can see that and that I can provide support and hope to others who struggle.

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I chose to share this story with you during this month of Lyme Disease Awareness because had my friend not shared her story with me, it’s very possible that I would be in a very bad  and deadly place with my health right now. People can end up paralyzed, unable to speak, in cardiac arrest, in wheelchairs, bedridden for years, and eventually die from complications of Lyme Disease and we rarely ever hear about it. Lyme Disease mimics 300 different diseases and it is usually the absolute last thing, if at all, that is considered when testing for illness.

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You can visit this page where I list many links I studied while researching about Lyme Disease, Chronic Lyme Disease, and treatment.

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