Poll: Viral vs. Non-Viral Onset and Contagious Relationship

[picante]

I thought the same but did not have the confirmation from a specialist.

What led you to suspect this?

 

[Gingergrrl]

Sleeping with prostitutes is just one example of "Risky sexual behavior". But there are also others, such as having unprotected sex with multiple partners, which also can be true for women.

@sorin, this still makes no sense to me (as someone who has never slept with prostitutes or engaged in unprotected sex with multiple partners!) My parents are in perfect health, no one else in my family is sick and nothing was transmitted to me as a baby. I got sick at age 42, I was married, and it occurred two months after moving into a bldg that was heavily infested with mold & mycotoxins being dispersed through our A/C system. I know mold/mycotoxins do not apply to everyone and I may be in the minority but I do believe that there are many triggers of this illness. Some were bit by ticks (not me), some got a vaccine or flu shot (not me), etc. I truly do not think ME/CFS is sexually transmitted.

 

[CantThink]

But that wouldn't explain why only some children in a family get it (for instance only first-born), why their parents don't have it....

Yeah, I am the only one in my family who has it, and I have an older sibling. I got it as a child. I had a distinct viral onset, but with hindsight realise I had not been feeling quite right (cognitive difficulties & hand swelling) in the 4-6 months prior to that.

I also know of at least 5 other children in my village alone who developed M.E. at some point while under age 16 - and these are just the ones I know about. There were adults too. I live in a farming area where there was/is a lot of crop spraying, there are ticks, we have a lot of planes flying over us as we are near an airport... I know of other children in the general area who have developed M.E. also. None of them were babies or even toddlers when developing it (so seems unlikely they got sick in the womb), and as far as I know all the parents bar one are not ill with it.

So for me, like @Gingergrrl, there was no sexual promiscuity. I was a child, raised in a religious home... I find these assertions that it could be a sexually transmissible disease quite distressing!

 

[sorin]

So for me, like @Gingergrrl, there was no sexual promiscuity. I was a child, raised in a religious home... I find these assertions that it could be a sexually transmissible disease quite distressing!

Sorry, I did not intend to offense anyone. It was just a hypothesis that I made based on some similarities between HIV symptoms and CFS symptoms and also the theory saying that a retrovirus is involved in CFS. But HIV itself is not transmitted only sexually, there are other possibilities such contact with blood, drug needles, etc etc. On the other hand, the Chinese non-HIV AIDS that was discussed on the forum previously, that is mainly sexually transmitted and it is no HIV! And it has some common points with CFS! So, the things are quite complex and mixed, as I said, under this 'CFS' umbrella there are people with different diseases, but all have something in common - they do not have any diagnostic - so, for a superficial external observer - they are "hypochondriacs".

 

[Gingergrrl]

Sorry, I did not intend to offense anyone.

@sorin I was not offended and no need to apologize! I just thought if the theory applied, it is to a small minority of people and does not relate to the majority of those with ME/CFS type illnesses IMO.

 

[msf]

I´m curious as to why people say they had a viral onset - how do you know it wasn´t bacterial? Or even fungal?

 

[CantThink]

I´m curious as to why people say they had a viral onset - how do you know it wasn´t bacterial? Or even fungal?

EBV for me.

 

[me/cfs 27931]

I´m curious as to why people say they had a viral onset - how do you know it wasn´t bacterial? Or even fungal?

My onset was extreme weakness; it felt as if my limbs were paralyzed. The doctors at the hospital were surprised when the mono test came back negative (I was age 15). The only unusual thing they found was heart arrhythmia.

After a week in the hospital, I spent another month bedridden.

The doctors decided my illness was probably viral, but there was never a definitive diagnosis.

I suspect I had what today would be called "acute flaccid paralysis" or "acute flaccid myelitis". However, the year was 1978 and MRIs didn't exist yet.

http://www.virology.ws/2014/10/07/acute-flaccid-paralysis-of-unknown-etiology-in-california/

Anyway, that's why I responded viral.

 

[picante]

Mine was infectious mononucleosis, which was identified while I was at the doctor's office. I went there insisting that the antibiotics they had prescribed were doing absolutely nothing, and therefore I must have a virus, so please test me for mono.

I don't know what that test is, but it must be something they can do right then and there, probably with a microscope (?).

That was the obvious onset, 23 years ago. Getting back up on my feet after 6 weeks in bed, I slowly realized that my metabolism had crashed. Was EBV the cause? I doubt it.

What caused latent EBV to reactivate in my body? That's the million-dollar question. I was 35 at the time. My boyfriend didn't have it. I was teaching at the university, so perhaps a student had it, but more likely it was a reactivation of a virus I had acquired years before, as we all do, with EBV.

 

[Gingergrrl]

Mine was mono from EBV (verified by test at doctor's office and hospital) but I fully recovered for ten months until I moved into a rented condo with a severe mold problem. The EBV virus re-activated at some point and stays this way to this day and I suspect always will. So for me it is both viral and fungal (mold.) My husband (then fiance) did not have mono and never caught it from me. I got it immediately following a minor surgery. My husband jokes that I kissed someone else and I said only if I kissed the surgeon while under anesthesia LOL.

 

[msf]

Ok, I will change my question - why did the doctor say it was a virus? I´m not talking about people who tested positive for EBV, I mean people who had a non-specific viral onset. There are some tests that apparently can distinguish between viral and bacterial infections, but they are not in frequently used in the UK, perhaps the US is more modern in this regard.

 

[halcyon]

I´m curious as to why people say they had a viral onset - how do you know it wasn´t bacterial? Or even fungal?

Because that's how I was diagnosed after my ME struck and I ended up in the hospital. They said it was viral syndrome. Little to no fever, lymphocytopenia, empirically rx'd Z-pak had no effect, etc.

 

[msf]

I´m pretty sure that´s not enough to rule a bacterial infection out.

 

[halcyon]

I´m pretty sure that´s not enough to rule a bacterial infection out.

Well it was afterwards followed up with negative blood and urine culture, negative lyme test, and negative for all the usual suspects (c. pneumoniae, mycoplasma, etc.) and positive for an enterovirus infection so their dx turned out to be spot on.

 

[msf]

Sure. Again, I´m not talking about people who have had a positive diagnosis, I´m talking about those with a negative one.

 

[halcyon]

Sure. Again, I´m not talking about people who have had a positive diagnosis, I´m talking about those with a negative one.

My guess is that most people here did not receive much of a workup beyond a monospot test and a CBC if they had acute sudden onset. My dx of viral syndrome was purely clinical, all the more in depth testing came in the weeks and months after.

 

[msf]

Still, you tested positive for a virus (I´m assuming for active infection) and you presumably had some of the typical symptoms of that virus.

I tested positive for Yersinia five months after I fell ill, but the symptoms I had at the time were classic Yersinia symptoms, so I´m 95% sure that´s what it was.

 

[picante]

There are some tests that apparently can distinguish between viral and bacterial infections, but they are not in frequently used in the UK, perhaps the US is more modern in this regard.

I don't think so. They throw antibiotics at everybody, because it might be bacterial, or it might become bacterial. I don't think any of them do proper diagnostics during the acute state of an infectious illness. The only exception to that in my experience was the Physician's Assistant who diagnosed me with shingles 3 years ago.

 

[Gingergrrl]

In my case, I had very thorough testing for Mono/EBV (with all positive, not just the monospot test) with an infectious disease specialist who ruled out CMV and other viral & bacterial causes. My symptoms matched (liver tests through the roof with jaundice skin, tonsils almost choking my airway and got an abcess on tonsil, fatigue where I could not move, high fever for three weeks straight, etc.)

However, I recovered from mono for ten months before becoming ill again. I now (in my case) believe treating the re-activated EBV with anti-virals was a red herring and that the final insult to my immune system was breathing in toxins in prior workplace plus 2-3 yrs mold exposure at home. I think our bodies can only take and recover from so many hits until there is a final one that knocks us down.

 

[Biarritz13]

It would have been great if blood groups were also included in the poll (just me being curious)