Rocky Mountain Spotted Fever
Rocky Mountain Spotted Fever (RMSF) is a potentially fatal tick-borne illness that is caused by a tick infected with the rickettsia group bacteria. It often comes with coinfections and impacts each system in the body. I also was diagnosed with Lyme disease and mycoplasma infections which are common coinfections of RMSF. The symptoms of Rocky Mountain Spotted Fever vary but typically include fevers, headaches, muscle aches, and sometimes a rash. There are many other symptoms as well and I will describe the symptoms of Rocky Mountain Spotted Fever that I experienced below. For more information about tick borne illnesses click here.
Symptoms of Rocky Mountain Spotted Fever
My story through chronic illness is messy and ugly and all those things that come along with Rocky Mountain Spotted Fever and coinfections. It’s very complex so I will definitely break it down into multiple blog posts. My diagnosis is long and I would never in a million years think I’d being going through all of this. If you know me you know I focus on health from the inside out and I believe in the power of food as medicine. I also believe there is a place for medicine and in my case medicine saved my life once I found out what in the world was going on with me. Once I started treatment for Rocky Mountain Spotted Fever I really started focusing on my mental and emotional wellbeing too.
My goal in this post is to provide you with some symptoms that I experienced and continue to deal with so that if you are dealing with an unexplained illness, or even going through RMSF, you will know there is someone out there going through it to. I hope you feel support through my upcoming blog posts.
The Place Where It All Started
I was going through some things in early 2019 through 2020. More of that in another post. Then in May 2020 I took the kids to a local rec center where there was a big hill and lots of fun trails to go on. We had a great morning and day. That night I was getting the kids in the bath and shower and just happened to rub on my back and felt something strange. I immediately asked my husband to take a look and it was a tic.
My husband immediately pulled it out, but the mouth stayed in my back. I called my doctor and started Doxycycline the next day. I did a 10-day course which I have learned now that is not nearly long enough. The symptoms begin and wow what a whirlwind.
Before I go on I want to say that I’m the minority in the fact that I knew I was bitten by a tick. Most people don’t know they were ever bit. I knew I was bit and it still took almost two years to be correctly diagnosed. I don’t want you to have to wait that long.
Gash, the symptoms are a looooooong list but I will explain the main ones for now. The first symptoms started about two weeks after I got bit. I took all of my 10-day course antibiotic and I never heard of Rocky Mountain Spotted Fever before so I had no idea that was or could be a thing for me. We live on the coast in the south and I’ve heard of Lyme and know people that are dealing with it but also didn’t know the symptoms of that either.
I’ll never forgot that summer. It was a summer day, and the kids were both home with me. I was exhausted and I mean exhausted like I have never ever been. Not even during my pregnancies. It was a tired that I can’t even explain other than so exhausted I couldn’t brush my hair or barely make it around the house without having to lay down.
I was trying to do laundry and I was in my son’s room and just fell on the floor from exhaustion and I cried for probably an hour straight. I couldn’t stop. Then I would sit up and just stare off into space without being able to respond to my outside environment. The anxiety started. I’ve never dealt with anxiety like this before. It was intense. My heart would race, skip, and thump. The depression symptoms kicked in. Crying for hours at a time and had no idea why.
Crying would come in waves and I told my husband, all the time, “I feel so sad but have no idea why”. It was this intense sadness feeling that would just come over me and I would just cry and cry uncontrollably.
PTSD and Neuropsychological Issues
The neuropsychological issues continued, and I soon developed PTSD flashbacks from childhood traumatic events and from mold toxicity that I went through the year before. The PTSD flashbacks just appeared one day out of nowhere. One day I started having multiple flashbacks of events from my past and these flashbacks would occur all throughout the day. It was confusing and very upsetting at the same time. I found myself triggered by many things and people throughout the day.
I kept these flashbacks to myself and silently struggled through it. This was the worst thing I could do. In a time where I needed the most support and help, I felt so lonely, scared, and like I was literally going crazy. The anxiety and depression symptoms were unlike me. I knew something wasn’t right and I would often say “something is not right in my head” and “I feel so sad but have no idea why”.
I’d say “I am not right, and I know something is wrong with me. This is not in my head”. There were no answers for me and there really wasn’t any interest in trying to figure out what was going on with me. So, what did I do? I started doubting myself and doubted what my gut was saying. I started thinking “maybe this is in my head”.
What a bad place to be in. Unfortunately, this is the place that most of you are in before you get diagnosed and figure out what’s causing these symptoms. My prayer is you trust your gut. You know yourself better than anyone. Fight for answers.
Red Eyes, Swollen Glands, and Irritated Throat
The red and irritated eyes. Wow! I think back and can’t believe how sick I looked. My eyes were swollen with red rings around the eyelids. I had really dark circles under my eyes but especially my left eye. My eyes would feel like they had this film over there and would have dried goop around the lids. It was almost like I had pink eye for months and months.
Swollen lymph nodes in my throat but more so on my left side. My throat constantly felt extremely irritated. It would burn and burn all day long. Then one day I experienced mucus balls sliding down the back of my throat then I had these balls of blood just slide down the back of my throat. Ended up at the ENT and had an infection on my adenoid tissue. It turned out I had a pseudomonas bacterial infection and had to have my adenoids removed. Doctors still don’t know how in the world I got that infection as it is typically a hospital acquired infection.
Even after my surgery to remove my adenoid tissue, I struggled. Recovery was over a month, and I still had the swollen lymph nodes and throat irritation issues. The ENT didn’t know what to do with me at this point.
Headaches, Blurred Vision, Ice Pick Pain, and Cognitive Difficulties
I would stare off and could hear others but literally couldn’t respond. I couldn’t think of my words. Difficulty with word finding that just really worried me. As a speech-language pathologist I didn’t like that I couldn’t find my words. I knew what I wanted to say but literally couldn’t get the words out. It’s like my brain just stopped and wouldn’t work in that moment.
My husband stayed home with me from work one day because I told him I couldn’t function and had no idea why. It was a scary day for him as he saw my difficult days. I was sitting outside like I was in outer space, crying, heart thumping, stopping in mid-sentence and not knowing what I was talking about. The list goes on.
The headaches began and they were intense. Nothing could take these away. I’ve never had a headache like this. My reading became blurry, and the words would just go together. Headaches came from reading or looking at screens. My vision would seem to go in and out with blurriness.
I also started getting these weird ice pick pains in my jaw, chin, and throughout my body. An ice pick pain is a sharp quick pain that comes on quick and goes away. I remember being outside sitting by the fire and I got this sharp, intense pain in my jaw. It felt like a knife going straight into my jaw. It would come through my jaw, chest, knees, and hips.
More Symptoms of Rocky Moutain Spotted Fever
Insomnia was a big symptom of Rocky Moutain Spotted Fever. I didn’t sleep at night. Lying awake in bed, feeling wired but tired but couldn’t sleep. I was so dang tired and fatigued but I couldn’t sleep. What I need more than anything was sleep but it was the one thing I wasn’t getting. If I did any type of physical activity, then I would collapse and feel like I ran a marathon.
Then one day I noticed my left side of my face was a little droopy. At this point I was still trying to run my business and was in the middle of an Instagram video when I smiled, and my left side of my mouth barely lifted at the corners. I started noticing this when I would talk too. I begin to worry but didn’t say anything to anyone about it.
The shortness of breath and chest pain got so bad that I ended up at the ER twice. They thought I was a nut job because the tests they ran came back normal and I had a long list of random symptoms. The doctor was discharging me and told me to lay off the coffee and I won’t feel so anxious. This was after I told her I don’t even drink a whole cup of coffee in the mornings. I only drink water throughout the day. This was not my first encounter with professionals thinking I was cray cray.
I developed tinnitus and could hear my heartbeat through my ears. Any time I would walk fast or walk up the stairs my heart would race, heartbeat would be so loud in my ears, and my leg muscles would burn so bad I would sit down immediately.
Appetite Changes and Weight Loss in Tick Borne Illnesses
I love to eat. I love to cook, and I love food. It is my love language. I found myself very thin and down to 96 pounds and couldn’t keep any weight on. I felt so thin and frail and felt so weak and fragile all the time. I’ve always been one that internalizes stress, and it shows up in my weight (not being able to keep weight on). I no longer do this as my journey to health is not just physical but a lot of it is emotional and spiritual healing.
I’m the type of person that knows what I want to eat for dinner by breakfast time. However, I found myself having absolutely no appetite. Nausea set in and food just sounded blah. I found myself just eating because I knew my body needed it, but it was not appealing at all. I would take a few bites then feel sick.
Hydration was also an issue for me. Thirsty is an understatement. I would have this urge to chug water when I would start to drink. It was like I couldn’t get enough water. My hands would swell up in the middle of the night and morning until I got water through my system.
The Big Night That Changed It All
These are a few of my symptoms. The list goes on and on but I think this is enough for now. I want these blog post about my health journey to be both informative and helpful. With that I need to talk about the yucky symptoms, but I want to make sure I’m being as positive as possible too. I remember connecting with people once I knew my diagnosis and I started reading about their symptoms and I felt so validated like “wow! I’m not crazy, these are very real symptoms”. The fact that other people experienced them too was somewhat healing and gave me peace.
It was Easter night 2021. We were at a lake house to start our family spring break week. I woke up in the middle of the night. My whole body was twitching, almost like this very strong jerk. My whole body would jerk then stop then a few seconds later it would jerk again. It felt like my whole body was literally vibrating from the inside out. I woke up my husband and he went to go get my Mom.
I remember my Mom trying to get me to roll over on my back but I felt like I couldn’t move. It was like my body felt paralyzed. I think my Mom rolled me over on my back and my body shot up and my arms went straight out in front of me, stiff as a board and this deep sound just came pushing out of my throat. It was uncontrollable and like a demon had taken over my body. From there I had a massive seizure. Seizures continued along with tremors and eletric shocks. The memory loss kicked into a whole new level. Sensory issues, EMF sensitivity, Chemical sensitivity, and seizures triggered by lights started.
What Was Going on With Me?
What was going on with me? Am I going crazy? Have I completely lost it? Do I have MS? I felt so judged and lonely. It was like I knew something was truly wrong with me but who in the world was going to help me figure this out? It wouldn’t be until nine months later that we got answers.
If you are having symptoms that you can’t figure out please keep looking for the right doctor to help you get to the root of your problem. If you have been diagnosed with Rocky Mountain Spotted Fever, Lyme, or co- infections please comment on this post and let’s connect. This post and your comment could help someone else and possibly change their life for the better.