Time has passed me by and even though there have been many things I would love to log and share, I haven't. Why? Clarity of thought, time, fear... they are all correct. Life has a way of clarifying some things and at the same time, creating muddy water from what once seemed to be clean and healthy water.
When I began to emerge from the "mostly dead" state I had been in for almost 2 weeks, it was very pressing that I log this for those who are seeking information on this disease. The hero in this story is Jeff... don't for one second think otherwise!!!!
May 29th I woke up with my bed shaking. I was literally shaking to the point I could barely walk to the bathroom. Getting toilet paper was quite the task. I made it back to bed and somehow managed to swallow 2 Tylenol thinking I had come down with something and had a fever. Forcing myself on my stomach and trying to control the shake I waited for the Tylenol to kick in. Then, I was still. Eerily still. My back was killing me and I was extremely nauseous... then I felt like I was going to pass out. This always scares me, I've had a few episodes of passing out and I'm not a fan. If anyone is, I have a good counselor for you. As I was telling Jeff I was going to pass out, I threw up. Not just the "oops I threw up" it was more like old faithful, it just kept coming. If I hadn't been so lethargic I would have been scared. That set the theme for the next 2 weeks.
Instead of being on the road to Macon, Georgia where we were to meet our good friends for Memorial Day week end, we found ourselves at the walk in clinic. I've been sick a few times in my life. A few hundred maybe. This one was different. Jeff signed me in and I did my best to answer questions. My lower left back was hurting so bad, this was where labor breathing exercises came in handy. 45 year old grandma and I'm in a room hee hee haw haw-ing. After an examination, I managed to tell the doctor a few "weird" things going on so she ordered lab work and a urine sample. I had found a tick in my hair about a week ago but I honestly didn't think that was the problem. They did thorough lab work, COVID-19 test included. After an hour or 2 they found I did have a UTI so thought it could be a kidney infection but sent cultures off for Lyme and Rocky Mountain Spotted Fever(RMSF) "just in case." They gave me a VERY painful antibiotic shot in the same side that was hurting so much, they could have shared the love to the other side but no... Sent me home with a prescription for amoxicillin. I'm not an antibiotic person but at that point, I really had no choice. I knew I was pretty sick and I was pretty sure amoxicillin wasn't going to help. The doctor said to come back in 3 days for follow-up if I wasn't any better. I was NOT any better, I was increasingly worse with every day. My fever would get to 101 and I would shoot into shock pretty much. Shaking, nausea, everything that comes with fever. The pain was unbearable. We ended up having to rotate ibuprofen and tylenol every 2 hours just to keep me from having fever episodes. On Monday, spots began to show. They felt like bruises and they were in random places. By Wednesday, we figured they would send us to the ER and we were right. We made our way to Crestwood Emergency room. They did another lab set complete with COVID-19 test and Lyme culture. At that point they actually were suspecting Lyme or RMSF but the cultures from Urgent Care had not come back because not only did we catch them on the week end, it was Memorial Day as well. We left the ER with another antibiotic prescription and no answers. This is where I need to back the memory train up a bit...
When I was a teen, one of the 2 doctors I went to in my life was a dermatologist for my extreme acne. They had prescribed Tetracycline. When I went back a couple of weeks later, I mentioned to the doctor that I had been having trouble swallowing and I thought maybe I was coming down with a cold or something. He told me I was having an allergic reaction and that I should stay away from all pharmaceutical drugs "cycline." So for well over 30 years now, I've told every doctor (trust me that's a LOT of peeps!) that I'm allergic to Tetracycline.
Back to current story... Doxycycline happens to be the only drug that kills RMSF or to be more scientifically specific - rickettsia group bacteria. But when I had on my file "allergic to Tetracycline". They wouldn't give it to me without a positive culture but the culture had to be sent to Egypt so we didn't have it.
Sick. I was so sick, it was survival mode. I couldn't walk by myself, couldn't bathe myself, brush my own teeth. There was no sleep, barely eating... and then Friday, almost a week after first onset, I woke up and could barely talk, by that point I was covered in 3 different types of spots. I was so exhausted, I just looked at Jeffrey and he knew we had to go back to the ER. How he managed to get me from point A to point B is beyond me. I remember wheelchairs and eyes opening occasionally... it's blurry but there. Once again, the ER gave me a shot, another prescription and sent me home and there was nothing they could do until we see the infectious disease doctor, which wasn't until Wednesday. I had a fleeting moment in the ER with tears rolling down my cheeks thinking "I won't be alive by Wednesday to see the infectious disease doctor." Here's where I need to wax sappy and a little bit spiritual. I caught a glimpse of my blue eyed Peruvian and thought "he's fought so hard for me." In my head I had been quoting Psalm 23 "He restoreth my soul." Somehow a fight welled up in me. This may sound over dramatic but rest assured... there's no over exaggerating here. When we got home, I knew it was survival, get to Wednesday. Up until that point I was stressing over taking to much OTC meds, asking Jeff to do EVERYTHING... the kids... etc. When we got home from the ER on Friday, my brain kicked into survival mode. I made a list of anti inflammatory foods and supplements for Jeffrey to go get. What little I knew about Lyme and RMSF was inflammation from the bacteria was a big play in the pain. We started keeping a list of meds. At night I set my alarm to take med every 2 hours to keep from going into a fever fit. It was battle time! I mean, I couldn't stand up by myself but my brain was still working... kind of.
Monday my fever wasn't spiking to 101 any more. It was staying at 99 which is still high for me, my norm is 96. Miraculously, we made it to Wednesday! Jeff's work had allowed him to work from home which was a HUGE blessing!!! My appointment was at 8:45. This non-morning person didn't even care. I just needed relief. The Dr. came in and was very thoughtful and thorough but assessed fairly quickly that it was RMSF. At that point we had received the first culture back and it was negative. She said that was common and she was not diagnosing on the test, I had every other clinical symptom. We discussed the danger of me taking Doxycyline and she strongly believed that what I had as a teen was an adverse affect to Tetracycline and that it was very much worth taking the Doxycycline under observation. It was the only med choice we had. I was admittedly nervous but the desperation of relief outweighed any fear of allergic reaction. Jeff went and picked up the doxycyline and I waited there at the clinic. I took the first dose and waited...
We walked (he walked I shuffled) out of there an hour later with hope that this thing might be on it's way out. They ordered another RMSF culture, just to check so we went to the lab to have that drawn. I'm so thankful for wheelchairs!!!!
Thursday, I had 2 doses in me and by the afternoon I was able to walk a bit by myself. Thursday night I actually vacuumed. I didn't feel "human" until Sunday. It had began reversing, with the disease, every day I woke up worse. Once I started taking the antibiotic, every day I woke up a little better!!! I did all that I could do to keep the side effects from the antibiotic at a minimum but I was SO willing to put up with some side effects if it meant getting this disease out of my system.
Monday, June 14th. I was sitting here with a very thankful attitude!!!!! Overwhelmingly grateful to be on the other side of this! My phone rang and the caller ID showed it was the health department. She says "we are in connection with the CDC." At that point, I assumed my culture had come back positive and I was even MORE grateful. RMSF is best if caught early and treated. For it to go almost 2 weeks could have been so much worse. Many things went into play for this to be diagnosed and for me to be able to take the medicine that killed the bacteria.
On this side of it looking back... we both wish they would have admitted me when I went to the ER which would have forced an infectious doctor to take a look at me. Other than that, I'm just grateful!!!
One of my favorite quotes "you've been mostly dead all day" turned into "you've been mostly dead for two weeks."
Overall what did we learn?
Just stay inside - the end.
Ha partially joking :)
* At first thought of Lyme OR RMSF - TAKE DOXYCYCLINE!!!!!
You can build your system back after you've killed the bacteria! There is a time for antibiotics and this is one of them!
* Eat AIP (Autoimmune Protocol) It's a challenge but I definitely feel like this is what kept me from dying!
* Don't be allergic to Doxycycline :)
I want to document this for a couple of reasons, my memory is horrible and also for those who have RMSF and are looking for information. There was not a ton of helpful info of what to do. Just scary stuff saying "you're gonna die". From what I understand the "spots" on each person can look different so I'm posting MY spots as a reference.
