I would really appreciate any help, suggestions or feedback. I am so frustrated and tired of being sick. For over 2 weeks I have had fever....getting up to 102 - 103 almost daily. My doctor has done lots of test and is now referring me to an infectious disease specialist...a specialist cant see me until end of January. I can't continue living like this. I have had extensive lab work done, a MRI of my brain, echocardiagram, chest xrays. I know once the initial lab work came back fine...he ordered testing for TB, hiv, lupus, rheumatoid arthritis...all those test came back normal.
Please let me know if anyone has experienced this, has advice on what to do, knows what may be causing this, or can think of things to be tested for that I may not have been tested for yet...although it feels like I have been tested for everything.
I am just scared having a temp this high for this period of time.
I don't know if this will help, but I will relate what happened to my 16 year old daughter this past summer. She began a high fever on June 6th and woke up feeling terrible. She also had very puffy eyes. I kept her to bed rest for 2 days and tylenol. In the next two days the symptoms remained and she developed a sore throat and her eyes actually began to look swollen. We went to urgent care and they started her on antibiotic...She also tested positive for strep for the first time in her life. She continued the high fever, sometimes spiking to 106. The antibiotics did not seem to have any effect at all. On day 7, I took her to the doctor again and they hospitalized her with "fever of unknown origin" and gave her stronger antibiotics.
This created a crisis with her white blood cell count and to make a long story short...she was rushed to a major city hospital where we consulted with an infectious diseases specialist. They changed the type of medication she was on to doxycycline and she did begin to respond a bit to that where she wasn't spiking the high high fevers and she was feeling a bit better. They tested her for tick diseases, mono, meglovirus, and a ton more.
It was very scary as they told us all of the horrible possibilities the fever could be. Eventually she was released from the hospital and she was treated as an outpatient by the infectious diseases specialist. The medications affected her liver and so those tests came back elevated as well. I would say she exhibited fever symptoms for over 3 weeks total before they eventually subsided. She really didn't feel herself until mid August (just over 2 months).
They never did find ANYTHING wrong with her and listed her as "Fever of unknown origin". She has had some lasting concerns related to the stress of the event and all of the medications she was on, but otherwise is perfectly healthy. Since then, we have heard of a lot of people who end up with some kind of unknown viral something or other that allows them to spike a high fever for a prolonged length of time and medicine just can't do anything to identify it or treat it.
Keep your chin up and hopefully you will find some answers. We never did and I guess I was happy to not have any of the other things they thought it was. The bad news was...we probably will never know what it was and that is disconcerting.
Thank you so much for your reply. I hate that your daughter had to go through all of that. I hope she is doing better for now. I appreciate you sharing the story with me....it helps me not to feel like I am some weirdo or that this is all in my head.
About 4 weeks ago when I had a low grade fever my internist put me on antibiotics. I did not respond to them at all. He has some fear that I may have developed a resistence to some antibiotics.
My doctor spoke with an infectious disease specialist (the one that can't see me until the end of January) and he wanted to hospitalize me and do some extensive testing. My doctor didn't feel this was necessary and is waiting to consult and try to get me in to see another specialist next week.
Right now my official diagnosis is "fever of unknown origin".
May I ask what it was that created a crisis with her white blood cell count. The weird thing is that my white blood cell count is normal.....along with all the other tests. I don't know if this makes any sense...but, I don't want anything to be wrong with me....and at the same time I would be glad for them to tell me exactly what is wrong with me.
You mentioned meglovirus. I am not familiar with that. It seems like they have tested me for everything but I will research that one.
You also mentioned her liver being affected by the medications. This is one of my concerns. To make a long story short. I was in a serious car accident almost 3 years ago and have had 5 surgeries. After the last surgery this past may blood work showed that I had mild liver damage. My doctor instructed me to only take 2 grams of tylenol a day when absolutely necessary. Since I have been sick he told me it is okay to take the normal daily dose of tylenol. I am already scared it is impacting my liver. And because of a medication I was put on following the car wreck, it messed up my stomach...so I can't take asprin, ibuprophen or NSAIDS at all.
If you don't mind me asking, what were some of the horrible possibilities they mentioned to you while she was in the hospital? I would like to make sure that I have been tested and if not suggest to my internist that he do more testing.
Thank you for taking time to reply to my post. I appreciate it.
Yes, I have had a urinalysis done and the results were fine. As I explained in my previous post...I don't want anything to be wrong...but, it is frustrating when I know something is wrong and all my tests are coming back normal.
Glad to see that my post helped out a bit. The white blood count crisis for my daughter I believe was precipitated by the large doses of antibiotics that she was given in such a short period of time. The best interpretation I have seen is that the body was "shocked" by the fever and medication and so the white blood cells stopped production. The doctors never did address why that happened.
Many of the concerns they had about her condition were related to the fact that she had the severely depressed white blood count. High fever with no sign of high white blood count indicating infection was a cause to suspect leukemia, Lupus, liver cancer and a few other terrible things. She also had to be quarantined as anyone with any infection could have given it to her...
As they started to mention more and more stuff, we started to pray that she would get anything, just not the worse thing...pretty scarey. I know exactly how you feel about wanting to find out anything...just to know.
As for the liver problems, she had her enzymes go up and down indicating a potential liver cancer or liver disease. The doctor actually told us that if she had to have a disease of the liver it was preferable to liver cancer. As if we would want any of it at all...
All I can tell you is that after a month of treatment, we were told to get her as much rest as possible and come back in another month for further testing. When we went back after a month, she still was having intermittent fevers, although not every day and not exceptionally high, but her liver counts were coming down and her white counts were maintaining a "low, normal" range. She was finally dismissed by her pediatrician and we were told to let it work its way out. We have purposely been avoiding going to the doctor since, as she has felt ok.
Keep your hope up and try not to worry. I know that is hard, but you have to keep in mind that if it was something really serious, it would have popped up right away as they are very good at testing for the big problems. At some point, her symptoms matched ehrlychiosis (a tick disease), babeosis (another type of tick disease, and meglovirus. All of those came back negative.
No, she was not tested for west nile. We asked about it, but they said that since she had no symptoms like meningitis it wasn't indicated at all. I pushed to have the test to rule things out, and I was told that there wasn't any way it could be that. Whether that was true or not....???? That is what I was told.
Thanks for the inquiry. It helps to know that we at least thought to ask about that too. I also inquired about lyme's and sports related mono.