How Were You DX'd With CFS or ME?

[missbliss]

What types of tests were done and which type of doctor did the diagnosis?

 

[Galixie]

The doctor that diagnosed me was a hematologist who sort of put the cart before the horse.

He was clearly going to diagnose CFS at that appointment regardless. But I was actually there for a different reason and had been reading about low blood volume and how it has been linked to EBV*. So I mentioned that I had been tested for EBV antibodies a couple of years prior and had all of the antibody tests come back positive on four separate occasions. That prompted him to rerun those tests (because he doesn't believe that EBV can be chronic). He also ran a viral load test.

He found my results puzzling because I still had positive results for all of the antibodies but I had a negative viral load test result. He consulted with a virologist who confirmed that my results were weird because I didn't have active EBV but my immune system is behaving as if I do. The virologist had no recommendations and basically said there was nothing to be done for it.

*The hematologist was pretty sure those links had never been proven, but he did agree with me that I do seem to have low blood volume.

 

[echobravo]

had been reading about low blood volume and how it has been linked to EBV

Interesting, do you have a reference to research that links EBV to low blood volume?

Did you follow the virologist's advice, or have you tried any anti-viral treatment?

 

[jaybird1]

CFS at an infectious diseases clinic after having glandular fever; Lyme, lupus, cancer, diabetes, liver disease, leukaemia, kidney disease all ruled out.

 

[notmyself]

He consulted with a virologist who confirmed that my results were weird because I didn't have active EBV but my immune system is behaving as if I do

hi,did you have changes in your CBC( complete blood count) ? and also did you try seein another virologist? if your immune system is acting like you still got an infection i don't see why nothing can be done...some immunesupressant,antivirals ,there must be things that can be done..at least you know the root cause of your symptoms ,don't give up because of an lazy stupid doctor..

 

[Galixie]

Interesting, do you have a reference to research that links EBV to low blood volume?

Did you follow the virologist's advice, or have you tried any anti-viral treatment?

There was no advice to follow from the virologist. They sort of shrugged it off as no big deal.

I remember reading this article: http://www.prohealth.com/library/showarticle.cfm?libid=21486
But I don't remember the convoluted path I took to finding that article and I don't remember what I read that specifically mentioned EBV. I'm sorry.

I remember thinking I must not have enough blood in my body because I was constantly having anemia symptoms but still having normal test results. It had dawned on me that the tests assume a normal fluid volume. Honestly though, even when I was reading this article I wasn't thinking I had ME. I was just searching for an explanation on how I could seem to have perpetually low blood volume. Somewhere along the way I read something that mentioned EBV and it clicked with me because I had previously been tested for that.

 

[Galixie]

hi,did you have changes in your CBC( complete blood count) ? and also did you try seein another virologist? if your immune system is acting like you still got an infection i don't see why nothing can be done...some immunesupressant,antivirals ,there must be things that can be done..at least you know the root cause of your symptoms ,don't give up because of an lazy stupid doctor..

I didn't have changes in my CBC. I got the impression that, because the viral load test came back negative, antivirals wouldn't work. If I understand correctly (and I probably don't, because this is all greek to me), the antiviral wouldn't be able to reach wherever the virus is hiding. It can only work effectively if the virus is in the blood (which the viral load test shows it isn't, I guess).

I was given antivirals once, back in 2015. They didn't seem to do anything. My antibody numbers didn't really change. I can't remember what the name of the antiviral drug was. I do wonder if a different one would work better, but it sounds like it probably wouldn't.

 

[missbliss]

Excuse my ignorance because I'm still learning, but how does low blood volume show up on the CBC or other panels and which?

 

[Galixie]

It doesn't and that's why it took so long for me to even think of it and then bring it up to a doctor.

All existing blood tests are calculated as ratios based on the sample of blood taken. Normally that works just fine because the average person maintains a proper volume of fluid all the time. Since that is the case, changes in the ratios show anemia or other problems.

The only time doctors suspect low blood volume is when there is bleeding. Low blood volume from bleeding can be fatal. Chronic low blood volume is a bit of a mystery (shocking, right?). But it has been found in ME/CFS and Pots patients. The test for low blood volume is rarely done because it takes awhile and has to be done in a hospital. The hematologist that put me on florinef did it without bothering to test me. He agreed with me that it was the most likely scenario based on my ongoing symptoms. (I kind of wish I could have been tested just to know for sure if the guess is right, but it wasn't an option. None of the hospitals in my area even do that test.)

 

[Seven7]

CFS specialist.
Tests: Cytokine profile, Lymphocyte subset, NK cell activity and numbers, Viral titters for common CFS virus (EBV, all Herpes, COASAXIE, CMV.....) CBC, Methylation Pannel, B12, Vit D (125 and 3).

 

[wastwater]

What tests can you get in the UK of interest
Not sure they do cytokines here

 

[Little Bluestem]

I told an educated doctor of the symptom I had developed after a nasty flu and she agreed that it was CFS (as it was then called). There were no tests done to diagnose the CFS. There have been quite a few tests done to deal with the symptoms.

I had previously (before I knew what the problem was) told an idiot doctor that I thought my symptoms were due to never really recovering from a nasty flu I had. He said that there was not such thing as a chronic viral infections. That means he also did not believe in shingles or AIDS.