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Lyme Disease Support Network

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#1

Hello everyone! My name is Alyssa and I am 18 years old. I got bit in 2006 but wasn’t diagnosed with Lyme until 2013. The day after i was bit, my mom took me to the doctor. I did blood work and was put on an antibiotic. A few days later I broke out in rash across my stomach and went back. The doctor said I was allergic to the medication, and told me to stop taking the pills because the tests came back negative anyways. We listened to him, but my mom knew there was something wrong, but couldn’t figure it out. In the beginning, I only had fatigue and muscle soreness so the doctors said it was just growing pains. In 2010 my left heel started to hurt after I got pushed in a soccer game. Several doctors could not figure out why it felt like I was stepping on a knife every time I put pressure on my heel or why I could tolerate a sock on my foot for only 2 hours. I eventually got use to the pain, because no doctors would help. Then, my right heel and my joints started to hurt in the beginning of 2013. In September of 2013, we reached out to a Lyme specialist in Connecticut. The blood tests he did came back positive and I started treatment. In October, I got a migraine that still hasn’t gone away yet. Yes, I have had a migraine every single day in 2013, I wake up with one and go to sleep with one. Eventually we stopped working with this doctor and tried many infectious disease doctors and neurologists. They all denied Lyme existed, that I had it, and did not accept the positive test results. We finally found a neurologist that would help, despite not believing in chronic Lyme. He helped for a few months, but nothing fixed my issues. And somewhere along the way my memory started to fade and I would forget what I was doing, where I was going, what I wanted to say, and memories of my life. Going to school with these issues was very difficult. Freshman year was painful, but not too bad. I had tutors for all of my classes my sophomore, junior, and senior years because of the constant migraine, joint pain, chronic fatigue, muscle soreness, and brain fog. If I did go, I would only go for 3 classes, 2 or 3 times a week, and was in too much pain to talk to anyone or go to school events. Also, I have been in and out of physical therapy for the last 5 years, which was about the only socialization I experienced during high school. Somehow I was able to graduate, and now I am trying to navigate college with my mental and physical health issues. Last year I found a doctor in Pennsylvania who seems to be working. I am on 2 antibiotics, some pain medication, lots of supplements, and I am trying Low Dose Immunotherapy, LDI, shots and Gamma Globulin shots. Hopefully all of these things will help and I will finally get some relief. I have been in constant pain since 2010 and I just want it to end. Although I have a supportive family, I have a hard time opening up and letting them see how I really feel. I only have a few friends that are away at college, so i don’t talk to them anymore. I need a place to open up about my issues and I hope I can on here.


#2

Alyssa, I’m so sad to hear what you’ve been going through. I’ve had lymes for over 10 years now, that I know. I am older than you but I’m trying not to give up. I’ve changed soooo many doctors, drugs, and supplements. I believe there will be some relief for us soon. Hang in there. My next step is to see a nutritionist because when I eliminated sugar, wheat and some dairy…mostly sugar from my foods…diet I did feel much better. I’m not overweight. .never have been. But eliminating sugar from my diet brought me back…more than 50%. So much more to say…


#3

Hi, I am so sorry to reply so late. I hope the nutritionist can help you!! That sounds like a good idea to try, especially because it has helped you before. I’ve been on the Paleo diet a few times, which is similar, but I never saw a change. I might try it again, just to see if it’ll help. And it doesn’t hurt to try either. I hope you are feeling better and staying hopeful. Its hard to keep trying, but I know we can get through it!


#4

i just joined today and saw your story. I certainly identify with parts of it. seven months ago I got very sick while on vacation. I was treated with short term antibiotic for pneumonia and uti. it took several doctors to make a diagnosis of lyme as per western blot… I would like to share with you a few things. many times in the middle of this time period, I didn’t care if I lived. I figured that this must be what it feels like to have a terminal illness. i realized that if i just forced myself to work on my hobby that i am passionate about… even for a few minutes… then rested… i was on my way to recovery. please cultivate a hobby. mine is quilting. making something beautiful with my hands is a great distraction from pain and being out of breath!


#5

Hello Alyssa! i have much to say to you, so let me start from the beginning. I was diagnosed with lymes 20 years ago when they still didn’t know much about the disease. they sure as heck didn’t know how to treat it. as a very athletic dude and outgoing person it was terrible to have experienced the changes in life that i did, and they are very similar to your own. home tutoring, pain, extreme mental and emotional imbalance, migraines. I had no rash so they got to me late, and i was allergic to the amoxy, so i had rosephrin iv’s for years; they had to put an aortic shunt in because all my veins had collapsed. this was at age 14. two years away from school and i went from everyone’s friend to the freak mental case. i’ve had social anxiety ever since, but also the depression and litany of symptoms have never truly abated despite a stupid variety of treatments. you’re lucky for all the medical care, you can stay on your parents ins for a lot longer than i could then. but listen, this is what you need to be aware of, and take steps to stay ahead of:
Nutrition is more important than medicine. Research, and spend your medical care in this direction. You may find that you have picked up a shitty friend for life, and the emotional damage can be crippling.
the health of your intestines is incredibly important, as well as your mental balance. if the antibiotics don’t work, they will make the spirokete stronger, lymes is notorious for this. don’t expect people to understand, they just won’t, even those who wish to. the best many chronic sufferers can hope for is to find a level of persistence, because this economy is turbulent and chaotic, and doesn’t wait for the infirmed. sad but it’s just how it is, and you have my sympathies for this. Support your emotional strength with therapy if you can, but supplements are wondrous (I use Sam-E). This is critical, especially for you at such a young age. Here’s the thing: time is precious. Depression will steal this commodity from you. You must get a career that will sustain your condition, and it is something that will change over time; there may be days to weeks that you just won’t be the best person to be around. staying ahead of your attitude with a good plan of action can mitigate consequences.
insurance insurance insurance. good dental habits and dental insurance is a must, since this cost can destroy your ability to support the important problems you will face, and i can’t stress that enough. doctors, even specialists will not do what they say they can. I haven’t met a one who has been able to help for long, and i’ve seen some of the best on the subject here on East End Long Island. but listen, you aren’t alone, even when you are. i have climbed up from the depths of extreme despair, multiple times, and i know i will face it again. you can do the same. and i have a feeling we are in the right place. speaking to people on these forums, even just reading about those who suffer as i do, feeling alone and rejected, even by family, had helped so much. if you can be cured, i am joyous for you. but if you’re like me, don’t let your disrupted expectations of life ruin your potential, and cause failure to drive you to hopelessness.
stand in the light, alyssa, everything truly is going to be all right if you hold on for the better days, and endure.