I have many after effects, and another survivor who is now a good friend is having the same symptoms. I'm not a professional medical doctor, but we have all spent plenty of time getting to know our bodies from having this disease. I am 19, and I am a 3 year survivor. Every summer since I got sick I have been getting tonsillitis/strep throat. I do the usual trip to the ER and get sent home with an antibiotic. Well this year, I was told it could be an allergy to something in the air during the summer and I was instead told to take Claritin. It worked!! Even with full on strep throat, the Claritin relieved my symptoms entirely. Now though, my friend who is also a survivor is also getting strep throat. Could this be because the bacteria is still in our system? Would removing my tonsills make any difference?View Thread
This is a facebook group I started that has become a nice support group for quite a few people. We have over 220 members now...please join if you are on facebook and have experienced Lemierre's, whether as a patient, family member, friend, healthcare professional, etc.View Thread
It all started right after I started my senior year of college in 2003 (I was 20). I was only in school for a week and then it was Labor Day weekend. I had the worst sore throat that I had ever had. I thought it may have been strep or something similar at first. Unfortunately I was at school and it was a holiday weekend, so I couldn't go see anyone until Tues of that week. So, then I go to the student health center. By that point I still had the awful sore throat and not feeling well at all with fevers. They claimed it was tonsillitis and gave me a Z-pak and then said to come back in 2 days if I wasn't better. Well, within those 2 days, I ended up getting worse...I couldn't go to class because I was so weak and could barely even walk around, my fevers were over 103, I was having aches and pains all over, having some neck pain/swelling, and even some shortness of breath. So, of course on Thurs, I went back to the student health center. The doctor seriously just sent me back home and told me it was "just the infection." No x-rays, no change in antibiotic, no new tests, no "go to the ER"...nothing. But also, I was 20 and these were MDs checking me out, so I guess I didn't know any better to fight them at that point.
So, at that point I was talking to my parents daily and they were concerned of course. And, I just kept feeling worse and worse. By Saturday, my parents decided to come get me and take me home. As soon as my Dad and I got home, my mom immediately said that we were going to the ER. We went to the ER in the next town over because it was much faster. And, then that's when my story gets "fuzzy."
I don't remember much after that for awhile. I don't even remember seeing a doctor in the ER, just waiting. And, then I kinda remember being in a hospital room...and then nothing again...and then I kinda remember being transported in an ambulance...and then nothing again. From what my parents have told me, they first thought I had pneumonia, but wanted to possibly send me home (my parents said no way). And, then as far as the ambulance ride, I was transferred to a different hospital since they could treat me better there.
The next thing I remember is I am on a ventilator, the leaves had all changed color (went in the hospital in Sept and "woke up" in Oct), and everyone is telling me 2 weeks have passed and what was actually wrong with me. Crazy stuff. The only thing I remember is some crazy dreams, very vivid dreams. (some weird, some scary---everything from fishes floating around to giant toys to being tied down and botched surgeries to being engaged to a football player)
From what my parents have told me about what went on during that time....first, they had no clue what was wrong with me for awhile. I guess everything they were doing at first was not the right thing and I was just getting worse. My dad really had to fight with the docs to get me the care I needed. He told me that he had to have these sit down discussions with them to get them to something, anything different to save my life. Luckily, Dr. Harrison ended up being consulted and figured out what was wrong with me, that I had Lemierre's, and then changed my antibiotics and then I started getting better. Also, I was told that I had self- extubated myself at one point during those 2 weeks and had to get reintubated. I was a "squirmer." My parents said that I was communicating with everyone...but like I said, I remember none of it.
Anyways, after I "woke up" and everyone told me what was going on...over the next day or 2, I was extubated. Due to all the respiratory problems I had (the septic emboli, ARDS, pnuemonia, etc), along with the weakness from being stuck in a bed for a couple of weeks, I had a lot of problems with shortness of breath after (and for quite awhile). After about a week after extubation and having some PT, I was more thann ready to go home. They finally decided to put in a PICC line (for my IV antibiotics) and send me home with that.
At home...I was on the IV antibiotics for a week more and then switched to high dosage oral antibiotics after that. The next few months were rough for sure. I was super weak and got short of breath really easily---just walking across a room was too much. But eventually things slowly got better. I also went in for CTs and PFTs periodically to check on my lung status. I also took breathing treatments for a short time after. In January I was able to head back to school...and luckily after that semester, I was only 6 credits short, so I took a couple of classes in the summer to get my degree pretty much on time. Plus, I got to walk in graduation with everyone else in May, which was awesome. It was definitely weird going back after all that....anyone else feel the same?
After a year of checkups, I was pretty much cleared. It was a crazy journey, and it is still a crazy one. That was 6 and a half years ago now...and I wish I had the resources we have now then. I would've loved to talk to all of you then...I felt pretty alone. I never thought I would get to meet anyone with LS, much less talk to others. That's a reason why I started this group, and I'm so happy I did. View Thread
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