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Hello all. I’m new to this forum, and am hoping to get as many responses as possible, because I am in dire need of insight and help. I’ll start from the very beginning.
It is now February of 2018, and in July of 2017, I was bitten by a deer tick. I found it attached to my lower back, although there was no rash or redness. I pulled it off with tweezers, flushed it down the toilet and thought nothing of it. I never felt sick afterwards. A couple months went by and I started to have intermittent pains in both knees. Sometimes it was excruciating to the point where I couldn’t sleep, others it was slight. It came and went. I then had extreme pain shooting down my buttocks and back all the way through my legs, although this lasted only a few days. I soon began to have extreme dizzy spells, to the point where I almost fainted a couple of times. All of this happened randomly and were usually short lived, and never severe enough to where I thought it was anything serious.
Flash forward to December of 2017. I woke up one day and was extremely dizzy. All day. The next day, same thing. Day after day after day I was horribly dizzy and couldn’t figure out why. I began to have strange sensations happening with my vision. Not spots, nor blurriness, something just seemed off. After a couple weeks of this nonstop dizziness, my anxiety began to slowly spike. One night, I became so extremely dizzy and lightheaded, as well as my heart racing and feeling like my vision was darkening and I couldn’t see, I went to the ER. My blood tests came back normal, as well as my EKG. I was given Xanax and sent on my way. The symptoms continued. After consulting with my doctor, I was sent to another hospital and had a CT scan done, which revealed nothing. I was, again, sent on my way, this time being told I had vertigo, and given medication. I knew it was not vertigo, but gave the medicine a go anyways, ultimately with no success. I began to have extreme trouble reading things. I couldn’t comprehend what I was reading or writing, and continually had to repeat them before I fully understood what it was I was taking in, and even then it was fuzzy. I began having trouble with my memory. I couldn’t remember things from the day before, or the day before that. The previous weeks seemed to have never existed. I was scared. Very scared. The day before Christmas, I woke up feeling awful. I was in a fog, my joints hurt, my muscles ached and I felt overall like complete garbage. Nobody believed I was sick because I had no fever and was showing no physical signs of any illness. I thought I had the flu, but had no fever, no stuffiness or runny nose, no vomiting and no nausea. This sick feeling lasted almost 2 weeks, before ever so slowly subsiding, along with the dizziness, vision and comprehension/memory problems. I was better! For a very short time.
3 weeks went by, and everything was normal. One night I was laying in bed attempting to fall asleep, and a sudden electric wave rushed from my forehead all the way though my body down to my feet. It jolted me awake and frightened me. I was shaken up for a few minutes, but calmed myself down and attempted to try and fall asleep again. Boom, the same electric shock, this time running through my arms, hands, legs and feet. Now I was scared. Throughout the course of the next 6 hours I received countless of these ‘electric shocks’ along with a buzzing feeling in my forehead. Around 6AM, I was so exhausted and fell asleep, but only for about 3 hours as I was awoken by another electric shock. The next 3 weeks were hell. I had a massive headache that radiated around my skull and down through my neck every single day. My entire body was weak and slow to the point where I could barely move. I was having pains behind my eyes. Any sort of little light or sound was too much for my eyes and ears. Natural light was excruciating, and even watching videos on my phone with the lowest volume was hurting my ears. My legs began to feel extremely weak and heavy, feeling like I couldn’t even walk. Something was NOT right. I got into a new doctor right away, with help from my father who is a previous patient of hers. She listened to my symptoms and immediately told me she thought it was Lyme. I told her I had previously had a Lyme test, about a month before all of this, and it came back negative. She told me the tests cannot be trusted as they will give false results many times, and told me if she suspects Lyme, she will treat for it. She wrote me a script for 100MG of Doxycycline, twice a day, for 4 weeks, and told me I would be fine. I began to take the medication, and not only 4 days after, I felt AWFUL. A complete magnification of all of my symptoms seemed to appear. I felt like I was dying. I went back to the office, and she agreed to see me, telling me that I was most likely having a “Herxheimer” reaction to my medication, and explained what that was exactly. I convinced myself that I had to buckle down and get through it, thinking I would be better soon. A couple weeks after that, I began to feel slightly better, although having EXTREME pain and tenderness in my thigh and calf muscles. I expressed this to her, she again told me it was the Lyme. This was 2 weeks ago. It is now February 22nd, 2018 and I have 6 days left of doxycycline. I am still feeling absolutely awful. I cannot remember one minute to the next, I can’t think straight, I can’t comprehend any conversation, any sort of dialect. I can’t think of the right words I want to say, I can’t remember how to do simple tasks, and those simple tasks take an extremely long amount of time to complete. I feel dizzy and lightheaded, and my hips and knees still hurt. I feel completely depersonalized from everything. I feel like I am going crazy, or stupid or both, and I am extremely extremely scared. I went back to my doctor today, to express these concerns with her, but she was busy and I was seen by her partner. He spent a long amount of time with me, and told me that he was going to start from scratch and run many blood tests, looking for anything he possibly could, as well as the western blot test.
I am scared that all of my tests will come back showing nothing, and I will be delayed the proper treatment further. Neither my doctor or her partner know if I truly do have Lyme, but I do believe that I do. Thinking back to the random pains and dizzy spells I had months after I was bitten, coupled with everything that’s happened since and is happening now, I don’t see what else it could be. I’ve also had an MRI done, and that also came back clear. Is this Lyme? Is it neurological and late stage? It seems as if it is! But I need opinions from people who know this first hand. And if so, what should I do if my tests come back showing nothing? Should I demand to be put on an IV for antibiotics? I’m scared they’re going to write it off as my anxiety or mental health, which I have successfully dealt with in the past, and I KNOW that this is not that. I know my body, and something is attacking it. I’m scared I’m going to lose my mind and I’m scared I’m going to be sick for the rest of my life, or until I can’t take it anymore and I end up hurting myself! That thought alone scares me!! Someone please help!!
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