eolhcydal

I usually don’t post much about myself, but I wanted to tell some of my story to finding out I had Rocky Mountain Spotted Fever. It will be missing a lot of information and jumbled slightly (with grammatical errors to boot), but I will do the best I can from memory. I should have wrote it all down, but I sadly didn’t.

This (almost) 3 year long journey began in June/July 2014 and I decided to finally go to a doctor that August. I was having terrible pain all over my body that was similar to the feelings that fibromyalgia would give. I had nerve pain all over my body, and it felt as though I was tingling, burning, and numb in most of my body. Also, I had headaches that were all over my head that occurred everyday. I couldn’t stand anymore, so I went to a local doctor. I told her what was going on, and she did a “routine” depression screening. As soon as I admitted to having depression, she chalked my pain up to that and was sent away with a prescription for Amitriptyline, which I didn’t fill because I knew that depression wasn’t what was causing my problems. (Also take into account that she had once said that my strep throat was depression too).

I decided to get a second opinion from another doctor at a different facility nearby. This doctor thought that the first doctor was wrong with the depression, and she sent me to see a neurologist. I finally felt like someone was listening to me. I spent 9 months with the neurologist, and was sent to have many different tests done. I had blood work, a CAT scan, an EMG (nerve conduction test that was actually pretty fun to experience), and a sleep study done. The only thing they found wrong was low Vitamin D and B12, and that while sleeping I’m restless. The male nurse that was doing my sleep study got a kick out of watching me not sleep during most of the study. I slept maybe 3 1/2 hours of the 9pm-5am testing period. I was told to take some vitamins to bring the levels up, and she also prescribed Gabapentin to me, which was later changed to Lyrica because I couldn’t handle the anger Gabapentin caused me to have. She also had me start keeping a symptom journal and I noticed that occasionally I would have a couple of days (occasionally a week) without any symptoms. She was still baffled because I was “too young to have fibro”. After a few more visits, she admitted that she couldn’t figure out what I had. All she knew is that I most likely didn’t have fibro, and that stress was most likely causing my symptoms. She wanted me to come back for a routine checkup 3 months later. I knew she had given up.

I felt defeated after spending a year with this doctor, and she being unable to tell me what was causing my pain. I took a hiatus from going to see any doctors, because I felt like I was really crazy. I started doing little things for family and friends to try and earn some money for a trip to Japan, and I noticed that more symptoms were starting to pop up. When I looked down or got too excited, it felt as though someone was someone was stabbing and ripping my head open right above my neck and up almost to the top of my head. I had electric shocks go through my arms causing me to drop stuff, and horrendous spells of dizziness quite often to boot. I had to stop watching my little cousin because I had a huge fear that I would have one of my spells and end up dropping him. I really loved watching him, but I didn’t want to put him in potential harms way. I was able to do quite a bit of stuff (slowly) without more symptoms popping up for quite a few months. I was 2 years into this journey by now, and another rather ugly symptom pops up. I started getting diarrhea everyday, and I didn’t want to admit this to anyone. I went back to my second opinion doctor and she said I had a stomach virus. I was told to take some prescribed medicines and to come back if nothing changed. Nothing changed, but I didn’t go back because I was too scared to admit I was still having that problem. It took about a couple of months after going to Japan to realize that it was partially cause by a newly developed dairy allergy (and a little under a year later I also realized it is caused by a red meat allergy). What was funny about this is I didn’t have the same problems eating ice cream in Japan that I did in the states, so that’s why it took a while to realize it was an allergy.

I was starting to hurt worse and worse after my trip, and was staying in bed way too much. My dad tried to talk me into going to a different doctor that he knew and really liked. He told me to just give her a chance, even though she worked where the first doctor also worked (I had been refusing to go back to any doctor there because I didn’t want another doctor saying it was depression). After about 2 months of intense pain, I finally broke down an agreed to let him set up an appointment for me. (I was too scared to do it myself; I blame it on me being an introvert). I went to this doctor and told her everything I had been through, and she agreed that it couldn’t be depression. She said I would most likely have something like fibromyalgia or MS. I had thought of both scenerios, so I was happy that someone else had vocalized that they are possibilities. I didn’t care what kind of diagnosis I had, as long as I finally got an answer. She decided to send me to a new neurologist. Spoiler alert, I didn’t like this neurologist either.

I had a total of 3 visits to this neurologist. My first visit, he went over my paperwork from my past doctor visits. He saw that I didn’t have a MRI done, and he was thinking I might have MS. I was hopeful at this point, because he seemed like I was going to finally get some answers. He scheduled me for an MRI in 1 or 2 months (I can’t exactly remember how long after the initial visit) and prescribed me a muscle relaxer. I went back and had the MRI, and a visit with him immediately after. He came in to give me my results. I had no signs of MS, tumors, cancer, etc. You would think this was good news, but from me, it wasn’t. He said that he was pretty sure I didn’t have fibro either and said that everything was caused from stress.  Before I left, he prescribed me, wait for it, AMITRIPTYLINE to “help me sleep” he said. He said to take 2 pills a day, up my Lyrica to 2 pills also, and come back in 3 months so we can go over how I was feeling. Well, I decided to give it a try and stop being so anti-antidepressant. I was pleasantly surprised with how much happier I felt. Yes, I know that it regulates hormones and is it job essentially, but I didn’t want to admit to myself that I really need an antidepressant at that time. 

During the 3 month wait period for my next appointment, I had changed insurances. With the new insurance, Lyrica went from $25 to about $370 ($240 with a coupon). That was just for 1 month’s prescription. There was no way in hell I could afford that. I had to stop taking it because I couldn’t get help paying for it, and detoxing from it (and the muscle relaxer because I had to save money up to afford it too) was one of the worst weeks of my life.  I thought the pain was bad, but detoxing from those had it beat surprisingly. I was off the medicine for a little over a month (I did try calling doctors and seeing if there were other things I could take and it never got worked out), when the appointment date finally rolled around. I asked him about different medicines and he wasn’t willing to try anything else. He told me to just keep taking what I had and that there were no other ones he could prescribe (other than Gabapentin which I couldn’t take). Here I was again, with another doctor who was just going to keep having me come back every 3 months without any trying to help. I decided then and there I was not going back, and I was defeated once more.

It took another small break from going to the doctors. I thought about what could be making me hurt so much, and I thought about mold, ticks, fibro, the possibility of a false negative for MS, and more ailments that I had saw on WebMD (I highly suggest not to go down the rabbit hole of looking up your symptoms online because it will freak you out). I spent a while trying to talk myself into going to the doctor, but I just couldn’t. What finally made me go back to the doctors was I needed to get an okay to refill my allergy medicine. While there I had told her about what happened with the neurologist and she was shocked he had gave up. She sat there for a minute and stared at me. I saw the light flicker above her head as she said, “Have you thought about Lyme’s Disease?” I couldn’t believe she asked the very thing that I had forgotten to ask about at the visit. We went over my symptoms and she decided to test for it, RMSF, and another thing that I can’t remember. She told me it would take probably a week to get the results back. 

4 days, I REPEAT, 4 days later, I get a call saying, “Ms. Carroll, I would like to tell you that we got the results back, and you had a positive test for Rocky Mountain Spotted Fever. We have sent a prescription to your pharmacy that you need to go pick up today. You might be receiving a call from the health department, and we hope that you have a wonderful rest of the day.” I sighed so hard that the nurse chuckled from amusement. She knew that I had been waiting for this day for years and she could hear the relief hearing the diagnosis had given me. I ran into my grandmother’s house, who I stay with every other week to help out, and got dressed. I told my grandmother and mother that I would be back soon without any sort of answer on where I was rushing to (that’s unusual for me to do so they were very curious when I got back). I walked in holding the prescription bags and said, “Guess who has Rocky Mountain Spotted Fever... This girl (pointing 2 thumbs to myself getting a chuckle from them both)!” 

I took my first dose of 14 that would come the next 7 days. I came back into the living room to look up what I could about RMSF (my mom did as well), and we talked about it. Here comes the fun part. The prescription bottle didn’t mention that you should eat with it, but if you ever have the displeasure of taking Doxycycline eat at least 10 minutes before taking it and drink plenty of water with it (I drank a whole bottle after the mistake of doing neither with the first pill). It made me so ill that within 15 minutes of taking it, I had to go throw up. It made me sick the rest of the day. From then on (until the last day when I though half a bottle of water and 1 chicken tender would suffice btw it didn’t), I was careful with how I took it. I still got nauseated, but I didn’t throw up anymore. I did call on the 3rd day asking about nausea medicine, but one didn’t get called until today, which is my last day of taking the medicine I hope (which I am still thankful for having the medicine for nausea because of feeling horrible today)... I know that the pharmacy didn’t like me throwing up in their parking lot, but I really couldn’t hold it in (at least it was clear and didn’t smell bad that’s a plus right?). I really don’t know if this antibiotic has gotten rid of everything, but I’m just glad I am on track to getting better. In the past 7 days, my pain has decreased, but not fully gone away, and I’ve had more energy than the past.