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My experience with chronic Lyme Disease

2022.01.07 20:17 Jrusso545 My experience with chronic Lyme Disease

Hey all, This post is not so much of a cry for help as it is an attempt to add perspective to those looking into Lyme Disease for whatever reason. However, I would appreciate any comments on which treatments have worked for those experiencing this unfortunate disease as I’ve found that everyone’s experiences have varied quite a bit.
Back in the winter of 2018, I was starting my second semester of my junior year in college studying civil engineering in New Hampshire. Keep in mind that I am most certainly not naturally smart. In fact, I am almost always the space cadet of the group. Nonetheless I work hard and although school does not come naturally, I figure everything out one way or another. Plus, I tend to be a pleasant person to work with, so that gets me pretty far in life. There came a time during this semester that I began to experience brain fog, which clouded my ability to read, listen and remember the fine details about each day. I started sweating profusely and my hair started falling out. Naturally, I tend to ignore things till they go away. However, things only seemed to worsen as the month progressed before I reached out to anyone. So surely enough I got tests done and the western blot scale revealed that I did in fact have Lyme disease. At this point, the last time I had gotten bitten by a tick was a year prior. There was a rash after I had removed the tick but it was not the typical bullseye. I asked multiple doctors once the rash had not gone away after a month. They told me to let them know if I started experiencing symptoms, but didn’t feel the need to test me. So there I was a year later, experiencing symptoms. In the prime of my young adulthood failing every exam I took and losing my social life, my sanity and any confidence that I had prior all this. I was put on multiple types of antibiotics (doxycycline, minocycline, zithromax, some antibiotic to treat malaria) which helped a bit, but never all that much. Even so, I continued to see doctors of all specialties and they all came to the conclusion that Lyme disease was most likely the issue at hand. My MRI on my brain came back normal, so fortunately nothing seemed all that permanent at the time. To fast forward a bit the remainder of my college career consisted of putting my head down and pushing through unfortunate circumstances. My professors were willing to work with me, but only so much. In the end I just accepted my fate and figured out how to make everything work for the time being. So I did. It was not graceful, but I did get my degree and with only having to take two extra courses in the summer to make up for lost credits. For those of you reading that are looking to see if you are experiencing symptoms of Lyme disease, here was every symptom I experienced then.
Brain fog Blurry vision Hair loss Migraines Rashes around the scalp and nose Vertigo Dissociation Anxiety Depression Irritability Memory loss (short term and long term) Slowed processing speed Joint pain Fatigue Issues with word finding Racing thoughts Sleep paralysis Lack of focus Inability to read
During my senior year of college, my primary care doctor suggested looking into a psychiatrist and a therapist to see if maybe all my issues were a result of poor mental health. Being the open minded person that I am, I gave it a go. I think the therapist helped with certain issues. She mainly just helped me adjust my thoughts to be more on the optimistic side of things, like telling me to think that I’m going to be okay instead of thinking I’m not okay. I must admit that this helped a bit with working through some rough patches. Unfortunately, going to the psychiatrist did not help so much. I was prescribed antipsychotics for two months and to this day, I still don’t feel the same. I became stuck in a dissociative state, which I still have issues getting out(4 years later). Anyways, I got off of those.
After graduating, I backpacked around Europe for a bit and then moved out to Seattle. I’ve mastered the art of tricking people into thinking I’m a healthy and intelligent person. Meanwhile, I think my brain has aged probably an extra 40 years in the 5 years that I’ve been sick. In fact, I’ve never related to my grandmother so much in my life who’s most certainly “losing it.” My friends never managed to notice any of these changes in health except for when I’d get vertigo and start falling over. That was pretty hard to hide. My mother however knew as mothers do that I was not myself. My soon to be employer fortunately did not notice. I actually did wonderfully during my interviews. To this day I still don’t know how, but I managed to land a job working for a very large contractor. They moved me out to Seattle, WA but only for me to disappoint them. I was god awful at that job. With the mass amounts of stress, my Lyme diseases worsened tenfold as I literally could not remember anything that I was doing each day. But as always, I figured it out just enough to get by. But it damn near killed me. I didn’t end up going to a new Lyme doctor until a month after working in Seattle. One thing I did like about the Lyme doctors in Washington is that they do use supplements as well as antibiotics, which my doctors never did. After my first visit, I had to get 45 bikes of blood taken for blood tests. The main thing that was discovered was that I had Lyme disease, which was known, Rocky Mountain spotted fever, babesia, some sort of bacteria and mold issues and also that my liver was about to fail. With all this fun new information I was presented with, I got right back on antibiotics and began treatment. This consisted of all different variations of 2-3 different types of antibiotics mixed with 20-30 different types of supplements taken twice a day. It turns out that my body is not so good at detoxing, so a good amount of the supplements helped with that. For the firsts time I did actually see some improvements. I was not feeling good ever, bet I felt good enough to go about my day and tread water basically. After a year, I quit my job and took time off because it became too much and I felt my self slipping away even with proper treatment.
I now work for a new company doing electrical inspection. I have no idea what I’m doing but I am learning as I go. I am still taking about 100+ pills a day and I can function somewhat normally for probably 60% of the day, which isn’t too bad. I like my coworkers and they seem to like me. I do sometimes feel like I’m being ripped off by these doctors sometimes, but if I go off my treatment, I very quickly disintegrate as a whole. So I take my medicine and continue on with my life as if I have a choice. But I will say that I’ve plateau’d during my healing. There is often inflammation in my brain and I’m not entirely sure about what causes it. Sometimes stress. Sometimes food. Sometimes I just sort of crap out after exerting too much energy. But I do have issues doing the things that I actually live for. I love to rock climb and backpack, but I can’t do anything more than a day trip because I can’t bring all of my medication, which needs to be refrigerated. I’ve tried and I feel terrible when I do. So I am now here asking for what worked for others. What made you all symptom free. Cause all of my solutions seem to only be temporary. Let me know and also let me know if you have any questions.
If anyone actually read this, thank you and just know that you’re not alone in whatever situation you’re in. We’re all in this shit show together :)
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