Posted 6/18/2019 6:50 AM (GMT 0)
So when I was 15 I had a tick bite, bullseye rash and a horrible fever and flu like symptoms that left me couch bound for 2 weeks at my best friends house. I tested negative and neither my dad and I can remember if they prescribed antibiotics. Honestly I was a punk kid who felt invincible and had always hated taking pills. So if they prescribed em I doubt I took em. Unfortunate but I guess most of us have been there in one way or another.
I’ve worked mostly labor jobs, concrete, roofing, five years at a dairy in the shipping department throwing 300 lb stacks of milk and loading tractor trailers all day. Point being my joints have always hurt. My ankles snap 50 times a day, my hips pop in and out just turning my torso ( I was born with both of them dislocated so I’ve never thought much of it either) and my shoulders sometimes feel dislocated for no reason. I can roll them and they just grind at every point in the rostation. My knees pop each and everytime I bend a certain way and my neck clicks if I turn my head even slightly. None of these things really cause me too much pain.
Now onto things that do hurt. My teeth at times. They aren’t in good shape but the pains never constant. My feet will itch and burn when I’m trying to sleep at times. Even in my early 20s maybe younger I’ve had certain bouts of not being able to sleep because I feel a constant need to pee. But when I try to go I just stand there holding it. Other times I get an itching burning tingling feeling in my ankles feet and shins when I take a “had to get out of bed pee” ( this I’ve found zero reference to online. I’ve been a shift worker for awhile and I always wrote off my insomnia to that and just a general comfort of sleeping when I can.
Side note I’ve climbed the ranks over the past 6 years and have gotten to a point where I’m widely considered a semi pro Pool player. Having won multiple pool tournaments in multiple states and tens of thousands of dollars. Not much but that’s the billiards scene these days.
A little over a year ago I took a job at a construction management company and was doing a lot of renovating and remodeling banks. I started to notice some pain in my ribs and chest. Scared me enough I knew it was time to quit smoking ciggerettes. I think I also noticed some odd things starting to happen during the past year. Dropping things I would pass to someone. Just letting go before I reached there hand. Or not registering they had passed something to me. My relationship at home in the past 6 months has been loving but stressful times. Our cars both broke down. I attempted to do replace the ball joint in my girlfriends suburu and it turned into an absolute nightmare due to a broken bolt. So I spent a week laying in the snow trying to fix something well beyond me at that point. And then there was her knee surgery. And I got switched to a job in the city where I was robbed and had someone try to steal my car parked right in front of the bank I was working. They were obviously homeless and had something written on the back of a jacket about bedbugs. Anyway this person was clearly not well mentally or perhaps on drugs. Hard to say. But there was a brief physical interaction when I had to shove them away after they tried breaking into my Jeep. Other than that no physical contact. Following this episode we finish the job in the city and I get transferred to another job up in the mountains about 2 hours away. Middle of winter northern pa and I hate driving in the snow plus my company vehicle has no heat. Middle of March comes around and I haven’t slept much all week due to working night shift and trying to be around during the day to be supportive to my girlfriend she’s just having a bad week. 3/16/19 I take a bong hit ( I’m a regular cannabis user, heavily and have been for years) and I have a panic attack. The pain in my ribs is back, i can’t seem to catch my breath. I have a spot on my ribs I think is internal bleeding. I’m having a real freak out. My Fitbit is up to 110. I end up throwing up twice with the tiniest bit of blood mixed in. Not surprising in hindsight I’ve smoked ciggerettes and cannabis for 10 plus years. My girlfriend convinces me to go to patient first which I do reluctantly. My weight is 169 lbs blood pressure is normal. I complain about trouble breathing and a doctor comes in about 20 minutes later. I’ve had 20 minutes to sit on a doctor’s table with a blanket I asked for and some comforting classical music from the speaker. I’m feeling relatively normal by this point. He has me blow into something to measure the force of my breath and listens to my breathing. Unbenounced to me still he says I have bronchitis and prescribed me a medrol pack. I return home and my girlfriend tells me I better take my medicine and not be such a man about it. So I do as directed. 24 mg of methylprednisone. Followed by a daily taper. After day 1 man I feel great. My lower back pain is gone that I’ve lived with for the past 5 years. I feel great. Day 2 I feel good. Take the 20mg dose as directed. That night I fall asleep as normal and I wake up at 3 am sweating like crazy. Hmm wierd side effect I go back to sleep. Day 3. March 19th 2019. The day that changed my life. I take the 16 mg as directed. Spaced out through the day. It’s a Monday so I head to work around 8 pm. I arrive around 10 do what I need to do to get the crews started and I take my last pill around 11 30. I lay down on the couch in my office and I start to drift off to sleep. Suddenly I wake up sweating like crazy. My hr is 42 according to my Fitbit. I message a nurse friend and ask if that’s normal and she says I have corticosteroid induced bradycardia and I need to go the nearest ER. While waiting for her response I notice that my heart is just pounding. I’m sweating like crazy but I feel freezing cold. And I can’t stop pacing. I’m just doing laps around my table in my office. So I call the crew off, tell em I’m sorry but I’m havjng a wierd reaction to a new medication and need to go to the hospital. I drive myself there about 15 minutes away. By the time I get there I am feeling a bit calmer. Much better really. I figured I’m here better get checked out. So I go in register and sit down. Everything looks normal upon check in and I sit and wait to be seen. about 45 minutes goes by and by this point I’m just bored wondering what I’m doing here. There’s nothing wrong with me. Finally I get called back and am sat on a bed in the hallway. A nurse comes to ask what’s wrong and I tell her I feel really cold. Like really cold and she says oh your temperature is normal. I tell her about the prednisone and the previous mentioned expierenced. She says oh stop taking that and writes me a prescription for another cortico steroid inhaler. This I never used because I haven’t complained about asthma once.
The next day I still don’t feel right so I call of work. I can’t sleep and I’m getting night sweats.
The next day I call my mom and I say hey can you come take me to the hospital you work at. I think I have some kind of steroid induced psychosis. I can’t seem to feel my thoughts, I don’t really recognize or feel comfortable in my own house. I go to a different er and my mom meets me there. They talk to me about what’s going on and I tell them how I feel like I’m on the jake train but I’m not driving. My personality seems similar to everyone around me but I don’t feel right at all. I can’t seem to put simple thoughts together. They tell me it’s anxiety and offer me a shot of something I’ve never heard of before Ativan. It calms me down a little bit but doesn’t make me feel any better. Half an hour passes and I get discharged and I’m told to follow up with psychiatric outpatient services. All of which are months booked. The next few days are hell. I can’t eat anything I can’t stop pacing. I can’t sleep and can’t watch tv or focus on anything at all. I can’t read. All I can do is listen to the same anxiety music on YouTube and lay in bed and close my eyes or walk laps around the outside of the house. I haven’t smoked weed or ciggerettes this whole time so I wonder if I’m just expierencing an intense withdrawal. I find google and I start to wonder if I’ve done some permanent damage with the prednisone. I start to wonder if maybe I crashed my adrenals because I didn’t finish the taper. It makes sense. The fatigue. The weakness and the insomnia. I’ve been throwing up daily and having a fun bout of constipation like I’ve never expierenced. A few days later my heart just feels like it’s not working right. Something must be wrong. Back to the ER. This time they do a a bunch of standard bloodwork. A thyroid panel. Cat scan. EKG. A thorough workup. I’m completely healthy here’s a laxative for the constipation and some zofran for the nasuae. Despite being glued to a toilet for a few hours terrified to even think of constricting s muscle for fear of more diarrhea I still don’t feel right. I suffer for a few more days. Now I’m breathing shallow and I have some odd spots appearing in my hands. Slightly brown. Back to the er they check for bowel obstruction nothing. They write anxiety and depression on my form and all other bloodwork is normal. Except for my cortisol level. That’s slightly elevated beyond the standard range. Which I had to beg them to test for ( maybe I’m over reacting but I’m still a babbling mess and I’m well aware I just keep repeating myself and not making much sense the past few days). I’m also really considering killing myself at this point because something is very wrong with me and no one can seem to figure it out. I start taking benedryl every night to sleep and for a little while it works. I meet with a ew family doctor in town. ( I haven’t been to a doctor since I was a teenager, so I have no relationship with one). I explain what’s been going on. How I feel. She says it sounds like anxiety but she’s going to run some tests. I ask for her to check thyroid again as well as a full std test and a Lyme test because I’ve always been curious. The results come back my tsh is way low and my other thyroid tests are not great. My Lyme test is negative for a old infection bust positive for a recent infection. Igg 23 and 41 ign 23 and 41. I get 10 days of doxy. A quick google search tells me that that isn’t right so I find another doctor as well as an endochrinologist. The endo reruns labs 4 weeks later and everything is trending back to normal she is not concerned. My new doctor tells me a read a book called life after Lyme, gives me 28 days of doxy 200 mg a day, tells me to take a probiotic and gives me a note to stay out of work for the rest of the month.
Finally I start to feel better. Not great but I can focus on a video game. I can watch a movie. The fatigue is crushing but I’ve also lost almost 30 lbs in 3 weeks time. My dad comes up from Virginia to stay with me for a week to help out. Slowly but surely I’m eating normal again. My bowel movements are regular. Healthier than all my life. I was always a go once a week guy and it was painful at times but I figured that’s how everyone must poop or I’m just unlucky. Never thought of it as a health concern. I digress. So I’m feeling better. No more er visits, just a follow up at the end of the month with the new family doctor.
In the first two weeks after starting doxy I’ve read life after Lyme, why can’t I get better by dr Richard Horowitz, healing Lyme by Stephen Buhner and Unlocking Lyme by Bill Rawls. Hmm I better find an llmd 28 days of 200 Mg doxy isn’t going to do it.
I find a llmd northern pa. Find a few patients on Facebook and they all say he’s old his staff sucks but he’s great so I set up an appointment. I’m feeling better but I still have almost no energy, insomnia and the rib pain is worse as well as new pains in my arm and elbow. And my knees hurt that’s new. Pretty tolerable beats diarrhea and dry heaving for weeks on end.
So I go and see the Lyme doctor. I’ve brought copies of all my bloodwork and myriad of recent visits. He looks st my western blot. Says you have Lyme disease and prescribed 600 mg of doxy, 500 mg of flagyl, 1 gram of valtrex. Low dose naltrexone, b 12 injections, probiotics, an herbal tincture, Xanax, and some diabetic neuropathy vitamins. Methylfolate I think but I could be wrong. He says do the herbal tincture for two weeks then start the meds. I read about the meds I’m going to be taking. Flagyl sounds scary. Ldn sounds scary. Xanax sounds scary. Even the neuropathy vitamin sounds scary.
1 day before starting the protocol the same thing as when it started happens. What is going on. Horrible diarrhea my stomache both burns hurts and is in knots at the same time. I can’t focus on tv of reading. It’s the exact same thing as the start. I was really excited to start the meds but now I just can’t eat and I need to take them with food. 3 days go by no eating. Down another 5 lbs. back to the er I go. Worst visit of them all, I’m told to follow up with a gastro doctor. At this point I’m ready for the psych hospital. I can’t go thru this again. I tell em I wanna admit myself. They come I. With security and a nurse and it’s way to serious a vibe. So I’m standing there in the psych outfit. Already feeling like a prisoner I change my mind and just sit in the er waiting room holding my stomach. I can feel it pulsing, my bp was 158/98. My family doctor didn’t like it when it was at 126/84. She said that’s high for a fit 27 year old. Er doctors said they always see high blood pressure. Umm no I’m used to the emergency room routine at this point.
I get home after 8 hours of contemplating jumping to my death of the roof. If I live maybe I’ll get to stay in the hospital where I won’t feel like I’m going to explode any minute. I sat **** it worst thing that can happen is I’ll die and I force myself to eat and take the abx. A day or two later I’m srarting to eat again. A week later back to normal. Same deal I canread watch tv play video games. Everything’s better. I can make love to my woman, everything in that department is working better. Stamina and energy are non existent but at least everything’s functioning again. I don’t take the flagyl every day. By this point I’ve officially been fired despite doctors notes and I’m told I’m moving in with my dad. He’s gonna get us an apartment and we will figure it out. I really want to kill myself at this point. And the anxiety of waiting for my bartonella test is killing me. I almost need it to be positive to explain the suicidal thoughts and anxiety and depression. I’m a pro Pool player I’m suppose to excel at the most focus and inner calm demanding sport there is.
So now I’m living with the woman I know I want to marry, she’s starting a new job on July 1st. Same day I’m going to see a doctor j in Washington DC. At the end of July I’m moving to Virginia and she’s staying in dc.
Around rolls June 17. Today. Coincidentally another full moon. I can’t sleep till 8 30 am, I wake up with the same stomach discomfort the same awful feelings of depersonalization. I can’t focus I can’t play video games. I’ve been dreading this day because every 30 days is so rough. Past week has been the best I’ve felt. I’ve noticed that when I smoke canbabis I get panic attacks. Even on low thc high cbd. I think it makes me herx. Or maybe it’s just close to the moon. I’m still figuring it all out. I feel nuts forveven saying that. I’ve been not myself almost 80 days and I don’t even remember who I was before. My girlfriends distant and I don’t know if she hates being with someone sick like this or if she’s just preparing for when I move. She says she wants to try to make it work but she isn’t promising anything.
Between not sleeping. Having two species of bartonella and Lyme disease. No job and no joy Can I really expect to have a life after Lyme. It’s been 11 years since infected but I’ve only had neuro stuff since March 2019. I see Dr j in 2 weeks I hear he’s on of the best and I liked his style in under our skin. I’ve also heard horrible things about his staff and that he doesn’t have as high a success rate as he claims.
I don’t want to kill myself I wanna live. But I need a life worth living. Otherwise I’d rather just take the amazing 27 years I had and leave it at that. I don’t know up from down with my body anymore between the twitches spasms and what not. Haven’t woke up rested in 3 months.
Someone tell me it gets better. Sorry if I left any holes in the story or broke any rules. I didn’t read them and I’ve never posted on a furoum before. Also I took a Xanax and haven’t passed out got some reason. Probably won’t even remember sharing this with you all so tommorow should be fun sifting thru the typos and stream of consciousness. To anyone still reading I consider you a good friend and thank you.
TLDR
My life has fallen to pieces in the 3 months I’ve found out I have neuro Lyme after 11 years off oddball things but nothing that prompted me to seek medical care. I need hope. Encouragement. People to talk to who understand. None of my friends care beyond asking me how I’m doing but how do I tell them all this. They would not understand or have the time to deal with it