I Have Epstein Barr Again, and it Took Doctors Almost Four Weeks to Diagnosis It

I found out yesterday that I have EBV (Epstein Barr Virus/mono) again. I am not surprised at this diagnosis because my symptoms felt more severe than a common cold and hung around for longer. I also didn’t have the sniffly/sneezy symptoms of a cold or a flu. What I had was a sore throat, swollen glands, fever, chills, cold sweats at night, dizziness, malaise, inflamed sinuses and Eustachian tubes, and other symptoms. I was and am a bit sniffly but no as much as I should be if I had a virus or flu. Still, though, despite all of this, it took four weeks and three doctors to finally get the test and diagnosis for re-activated EBV.

I came down with a very severe sore throat almost four weeks ago. It was so sore that I knew that something wasn’t right. I could tell that by this symptom and others that what I had was more than the typical cold virus.

About four days, then, after coming down with this illness I went to a walk in clinic to get checked out. He ran a strep test, which was negative, and told me that I have a virus. I explained to him, though, that I have Chronic Active Epstein Barr, and asked for a Epstein Barr (mono) test. He wouldn’t do it, though, and told me that if my symptoms persist outside of the usual time of a virus to get this test done through my primary doctor.

I still had a sore throat, though, a week after it had started. I knew that this was a long time to have a sore throat for a virus or even flu. Plus, my temperature had started to actually worsen and was about 102 degrees.

The next day I went to the doctor and found out that I have an ear infection that was caused by the virus that I had. The doctor I saw was at my primary clinic. She ran tests for the flu and strep throat because she assumed that my virus was one of those two, as it seemed more severe than a typical cold virus. But both of these tests came back as negative.

So I asked again for an Epstein Barr test but she refused, saying that if I still have symptoms after the ear infection clears that then we can do the Epstein Barr test. At that point I was wondering why these doctors won’t run this test considering that I have CAEBV. It was kind of strange.

About four days later I still had a sore throat and other viral symptoms despite being on antibiotics for four days. I went back to the doctor’s office and saw a new doctor. This one agreed to do an Epstein Barr test, but it was late so we had to push the blood draw to a later day.

I finally got my blood drawn this past Friday, and yesterday I found out that I do have an active EBV (mono) infection again. I am pretty frustrated, though, that it took doctors so long to figure this out. I’m not sure why they tried to rule other things out first, as it should be obvious that this is something that should be tested for in me right away since I have a history of re-occurrence.

Next time, then, that I get what feels like Epstein Barr, I’m going to be more assertive with doctors about testing for it. I don’t like the fact that I didn’t get the diagnosis so late this time around, as it had almost been four weeks since I had it that I got diagnosed with EBV. The thing is that EBV lasts about four to six week, and that the treatment for a re-occurrence of EBV is antivirals within the first few days that the re-occurrence occurs. It is similar to how you deal with the flu. But, since doctors wouldn’t test for it, I didn’t take the antivirals that would have lessened the symptoms, which resulted in severe symptoms and an ear infection on top of that. This, however, is just another example of the failures of the health system to treat patients with rare illnesses such as CAEBV.

As I mentioned earlier, the symptoms of EBV are similar yet different than colds and flus. The sore throat is definitely worse as are the swollen glands, which was the first symptoms that I got. Eventually my glands ended up so swollen that some on the back of my head were even swelling, painful, and noticeable. Also, the fever lasted for at least three weeks, as did the sore throat. Usually when I get a cold or a flu the sore throat lasts for no more than a week, and then the nasal symptoms begin. But, this isn’t so for EBV. Basically, it’s like a long standing version of the cold or flu. The symptoms, though, are really uncomfortable and just don’t seem to go away.

I am past the worst part of EBV now and my ear infection has cleared up. On Monday I started doing yoga again, but am holding myself to videos that are 20 minutes or less. I know that I need to continue to take it as easy as I can even if I’m on the tail end of this EBV infection. I am glad that I made it through the miserable part of the virus mostly intact.

It seems, too, like the resiliency that lessened when I was in AA is coming back. I believe that I’ve talked about this in other blog posts. Even though I’ve been sick with EBV and dealing with dissociative/PTSD, depression, and anxiety on top of that I still have been able to write my daily blog posts and do chores around the house. I also am doing a good job at taking care of sick cats with all of this going on too, and am doing all of this without panic or anxiety attacks. When I was in AA and “sober” (even though I don’t drink I don’t like to use that word today), if something like this would have happened, I would have been freaking out and calling everyone I knew in order to get “support” for my illness(es) or my cats’ illnesses. Today I can rely on myself and do not feel the need to call and talk to everyone every time I’m going through a difficult period in my life. For so long, though, it was concreted into me that I must call other recovering alcoholics when I was having a hard time and depend on them over myself. This, in turn, reduced my own independence, resiliency, and reliance on myself and led to me having to rely too much on others. I’m glad that today I am recovering from my time in 12 step programs. I am so much more functional today than I was for a long time.

Thanks for reading! Feel free to comment below.

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