I'm curious about lab testing for viruses (not COVID) Is this common where you live? If so, when did it happen?

My ME/CFS was apparently triggered by a virus. In late Dec. 1989 I got sick on a plane. We were returning from a trip to India (family visit). I was sick for more than a week - maybe 9-10 days?

But there were no tests done to see what the virus was.

I don't know if that's because of where I live (Portland, Oregon area), or because of the year (that was a long time ago), or because I just didn't know enough to ask for tests.

Many folks have reported a viral trigger for their ME/CFS and they know what that virus was. Would you mind answering some questions?

1. How did you find out what virus it was? What kind of testing was done? (if known)

2. What year was it?

3. Where do you live? (country/city, or at least the general area)
(or where was testing done if you weren't at home)​

I'm wondering when / where testing for viruses started to be normal or routine. Or maybe it's still not routine and you have to ask for these tests? Or find a specialist?

I was going to say that I've never been tested for a virus, not even HIV. By the time there was a test for HIV I had no risk factors (married, monogamous for years before that), and no symptoms, so never tested.

But then I remembered that a few years ago my doctor recommended that I get tested for Hepatitis C (it was negative) because I was in the recommended age group. But that's the only virus test I can remember!

I've had quite a few viral infections (or should I say, presumed viral infections) during my life. In 99% of cases I never even called a doctor, let alone got an appointment. I just did the standard rest, fluids, etc.

And in the rare cases when I did call a doctor about a viral infection none of them has ever suggested getting a test to see what the virus was.

 

My M.E started with a viral infection in 1991, I don't think my GP tested for viruses. I had 'extremely' elevated anti-thyroid antibodies and after my thyroid scan I was told by the endo that it was 'viral'. She told me that her sister in law also had this and it resolved after 9 months. I got the impression that the type of virus was of no importance.

I was tested by a virologist in 2001 for many viruses, hep C and lyme. All came back negative.

 

Interesting, thanks @ahimsa.

For my n=1, I had EBV confirmed in 1985. I had to ask for the test. Testing was not offered to me. I had repeat positive EBV tests some years later as well.

Yonks ago, in the '60s I had Strep throat - had a test for that.

I've had lots of flu and cold viruses - mostly never go to the doctor for these.

I live in Canada.

ETA: I too have had multiple negative HIV tests. I'm not in a risk group, but when I go to a hospital, and have tests, they always include the HIV test.

 

I think the UK's the same—there are tests for a few important viruses, and people who're ill or at risk might sometimes be tested for more routine bugs, but testing for common viruses in healthy (or relatively healthy) people is almost unheard-of.

Probably for good reason, to be honest. If it's not going to spark a dangerous epidemic and there's no treatment for the illness it causes anyway, why would you put a lot of resources into testing for it that could be spent much more productively elsewhere?

 

Thanks, @DokaGirl ! It's helpful to know you had EBV confirmed in 1985.

Yes, I've had tests for bacteria before - strep throat, TB - but not for viruses.

Digression:

I had strep throat three times in my senior year in college (1982). After my third time, I suggested that my boyfriend get tested. It turned out I had gotten it from him. Somehow he was a carrier with very few symptoms (mild fatigue).

Whereas I got a fever of 103 F (39.5 C), sore throat so bad I could hardly swallow, etc. And each time I had to wait 2 days for the test results (culture) from the student health center before I could get antibiotics.

 

My trigger was EBV and my GP automatically ordered the test for mono because that is what he suspected. (I guess based on the gigantic lymph glands I had: my neck was literally wider than my head, not kidding. I had no fever at all but I 100% had the "glandular" part.)

It was a test for both EBV and cytomegalovirus and showed current and past infections. It showed that my EBV infection was fresh and ongoing and apparently I had CMV in the past at some point.

Year: 2017

Location: Budapest, Hungary

 

A bit over a year ago, I got what I am pretty sure was a flu virus. As typical for me, I had mild flu-like symptoms for a day or two, then it passed. However, sometime after that I became very sensitive to proline (amino acid) and my ME symptoms were significantly worse after that. I recently started feeling better again. I think I may have had some form of long-covid, and somehow my body finally managed to defeat it. I'm in Canada, and I expect that if I'd gone to a doctor, it might have been difficult to get any viral testing (since the flu symptoms passed), and even if I did get tested and they found covid, I doubt that they would have given me any useful treatment, so I'm not kicking myself for not going in for testing.

Our medical system can't afford to do exhaustive testing for infections for every patient that 'isn't feeling 100% well". It also can't afford to supply the latest anti-microbial treatments (especially the ones with nasty side-effects). I think the more frequent testing for seriously contagious agents is more a response to the costs of the pandemics that have arisen in the last few decades. It's not for treatment; it's for preventing spread and qualifying for official leave time and other benefits.

 

My ME onset was linked to glandular fever (mononucleosis) when the presence of EBV was formally confirmed approaching 30 years ago. After a number of years I believed I had recovered, then twenty two years ago a major relapse was associated with a bout of what I believe to be influenza, but my GP undertook no testing to confirm the virus.

Have had subsequent blood screening, prior to ill health retirement and prior to being seen by a specialist ME/CFS service when no active viral infections were identified, though I now can’t remember what viruses were tested for.

 

Thank you @Wyva for noting there are test results for both current and past EBV and CMV infections. I thought so, but wasn't completely sure.

My ME had a step-wise, or gradual worsening. With one of those early steps, I found out I tested positive for EBV for a second time. At that time I didn't know that could happen. Apparently, one can have EBV multiple times.

 

The 'thing' that marks my onset is marked in my medical notes as;

22 april 1987 non arthropod borne viral disease of cns nos (xe0r8) viral encephalitis.

It was 'bad'.

I was not told (I didn't find this out until I got my notes a year or 2 ago - but I remembered the illness and have always associated it with onset), and although the doctors office assessment that led to that assessment is hazy (I was hallucinating and fading in and out) I remember no blood test, or even any physical contact with the panel of 3 GPs in the room. I remember my sitting on a chair in the middle of a vast floor and them sitting on the other side of a large desk - more like an interview than anything medical.

So..I am fairly sure that no virus testing occurred.

I'm sure that no follow up occurred, as would seem to have been mandatory under the rules at the time, which also appear to imply that I should really have been hospitalised rather than being given a script for codeine (low strength) and told repeatedly to leave (standing up was a problem, as was walking to, and operating, the door, took multiple attempts.

This was in the UK, in 1987

 

1. EBV

2. 1998

3. Australia

Testing for viruses doesn't seem common in Australia. I dare say the only reason I was tested for EBV was because the GP strongly suspected it.

His colleague had misdiagnosed my symptoms as tonsillitis and prescribed amoxicillin. I returned to the surgery a day later covered head to toe in a bright purple rash. Amoxicillin and other similar antibiotics are well known for causing rashes like this with EBV, however the GP had never seen a rash as bad as mine and gave me steroids (which I don't think was the greatest idea).

 

1. No idea what the virus was, but I had two lots of tonsilitus plus flu. The only thing I was tested for was Glandular fever, which was negative.

2. 1993

3. U.K

 

My GP of 35 years didn't test me for viruses in 1991, and never wanted to test (even when I asked) when I had viral reactivations throughout my M.E years. Even my recent vestibular virus that is *still* giving me distress isn't being investigated as VIRAL and considering my history she still refuses to address this. She continues to send me to specialists to r/o everything under the sun (auditory neuroma et) but refuses to believe (?) it's viral.

She had the opportunity to test me many times when I'm actually living it in real time but refuses. Bizarre.

 

Viral onset for me but 2 weeks after I had recovered not straight away. Then near remission 2 years later but set back after general anesthetic and never returned to baseline. Acute ebv reactivation 2020 definitely set me back yet again. Currently on famvir and have experienced quite a big ebv flare up on that which appears to have now subsided.

As for tests if you can't get the right tests which you can't in the UK on the whole then it's not worth the paper it's printed on. For EBV you really need the early antigen to see if it's a true reactivation of dormant infection. Which could still cause issues even if the other antibodies are normal (contested). As for entereoviruses and Lyme you need very specific tests for the former which can't be done at UK labs. As for Lyme there's no test I believe that will pick it up.

Also interesting @Art Vandelay talks about the rash. I've had this rash three times. Once with amoxi then twice with clindamycin and my GP at the time quite wrightly figured out that it was a cross reaction with ebv and not Scarlett fever rash. Very clever man that GP.

At any rate I was tested for acute mono which came back negative 2 months after I got ME. I think ebv bubbled away under the surface for about 4 years before it fully reactivated. As for what set it off originally that's a mystery. Symptoms were absolutely dreadful fatigue and feeling like I was in a washing machine every day. Also had pretty bad gut issues for about 3 years. And ice pick pain in my skull and various other parts of my body.

 

In the UK at least, doctors will say "It's probably a virus" if they don't know what's wrong with you!

 

That must be so frustrating for you. And, how awful to have another layer of illness in addition to ME.

 

I just had my 30th Sickiversary. I'm in UK.

My GP did test me for viruses way back then in 1992. Took blood, and then I had to go back 2 weeks (or it might have been 3 - can't remember) for second lot of blood. Nothing showed up, but I've no idea what viruses might have been tested for back then.

Worked in a lab testing blood (for NHS, but it was a university lab, not an NHS one), so maybe my GP was worried about what I might have been exposed to. Think I know the particular sample that might have been the one, but couldn't trace it when went back to work (for very few days before left forever). Which always struck me as odd. Everything always booked in, but I couldn't find it.

I have all my med records since then - got them to send to the Tribunal I had for PIP. I've never had the energy to read them all - imagine a Charles Dickens novel! Or possibly War and Peace! Too long! Not even sure where they are now - prob somewhere in my bedroom in the piles of stuff on the floor that I keep tripping over.

Will come back and report if I find my Med Records and there's anything useful in them. Sorry can't be more helpful. But at least we know virus testing of some sort was a thing 30 years ago in UK.

Edit to add... Virus testing was a thing that *could* happen, but I suspect didn't happen often for most people (unless it was HIV). My GPs at the time were always exceptionally helpful - very unlike the stories I have heard about GPs at that time from other people.

 

Despite multiple positive tests, indicating repeated current EBV infections, as well as other repeated, and confirmed infections, pwME are viewed as suffering from a psychological illness.

Would not there be some thought given to this being a physical disease?

It seems the easy way out is to blame the patient for their imagined poor attitude, and presumed lazy lifestyle. Diagnose depression and/or anxiety, and prescribe counselling and exercise, and nothing else.