other illnesses with viral causes (MS, cancer, etc.)

[Rory_5]

Hi all,

I'm relatively new to the CFS community. Just got DX'ed a few weeks ago, and I've only been sick for a couple of months. In fact, my DX isn't exactly official, just one doctor's opinion based on my viral test results and my list of symptoms.

I'm already starting to feel better (combination of melatonin and other supplements, plus antivirals) and I think my prognosis for recovery is good. What I'm wondering is, what are the long-term implications of this type of infection (EBV + mild CMV)? I have read EBV is linked to MS as well as certain cancers, and many CFS/ME/FM symptoms are similar to MS (some of which I have).

Does anyone have any insight, based on research or personal experience, as to the odds of one thing leading to another? Anything I/we should be doing for prevention?

 

[Esther12]

I think that it's all rather uncertain at the moment. I read something about a treatment to reduce inflammation during acute infection, but I think that was still somewhat experimental, and you will be past that point now anyway. The link with MS is still not well understood, but I think that association is just with certain responses to EBV (which over 90% of adults are infected with), rather than with mono/glandular fever (assuming that's what triggered your fatigue). Viral infections are never going to be a good thing, but it seems that there's not much that can be done about this, so it's probably not worth worrying about.

If you've only been sick for a couple of months, then you do have a decent prognosis - best of luck with getting better. To me, it seems that the best thing to do in your situation is to try to relax, play about, eats well and allow your body to adapt and improve itself. Personally, I think that I'd try to avoid 'CFS' stuff, a lot of which is rather quacky and unhelpful (depending upon what lots of different things, like which country you are in. I was in the UK, and got ill with glandular fever at a time when CFS was treated particularly badly, with a lot of people believing patients should be encouraged to treat it as the result of de-conditioning).

There is still a possibility that you will develop long-term problems, but most people in your situation go on to recover, or nearly recover. Hopefully that will be the case for you, and the period you do have of being ill won't be too unpleasant. If you do find that your recovery is only partial, then to some extent that may have to be accepted, and you will need to decide for yourself how to respond to this - but it seems like only a small percentage of those in your situation go on to suffer from serious long-term problems.

All the best.

 

[SOC]

You're in an excellent situation for having few long-term effects -- you caught it and got antivirals fairly quickly. There are no guarantees, though. We just don't know enough about ME/CFS.

Most patient experience seems to indicate that getting lots of rest at this stage makes a big difference in avoiding progression or other long-term effects. Eating well and getting lots of fluids is also a good idea. In other words, if you treat your body as if it has been seriously ill and needs time (many months) to heal, you'll probably do well.

 

[Rory_5]

thanks very much for the responses.

I am taking time off of work, thankfully I have coverage for that. I have been taking it really easy, not pushing myself too hard, avoiding caffeine and alcohol, eating well, taking supplements, etc. One thing, I find I now need 10 hours of sleep just to feel somewhat functional, but that makes sense in CFS. I have been getting steadily better the past three or four weeks, hopefully this continues.

I think I will stay on antiviral supplements (a prunus vulgaris blend) permanently, after I finish acyclovir, to keep these things in check.

 

[Esther12]

While getting over a serious infection, 10 hours a night doesn't sound worrying. If it helps you feel better, then it's a good thing imo. Hope you're able to enjoy and make the most of your improvements.

 

[SOC]

I think I will stay on antiviral supplements (a prunus vulgaris blend) permanently, after I finish acyclovir, to keep these things in check.

That seems like a good idea to me since many of us seem to have something wrong that allows herpesviruses to reactivate easily.

 

[taniaaust1]

Does anyone have any insight, based on research or personal experience, as to the odds of one thing leading to another? Anything I/we should be doing for prevention?

I too think as you've got onto things so quickly, that your prospects for recovery are probably quite good.

The biggest thing you can do is listen to your body and if it needs rest, to give it that. (As you are of the viral subgroup.. esp dont go and try graded exercise therapy thinking it will help.. many of those who have done that have made themselves much worst).

Do be aware that even if you fully recover that if you ever arent up to par.. say you catch something from someone, take more care then a person usually would d,o as it can be easy to be triggered back into this illness, if your body isnt good at the time. Once recovered you may be able to stay healthy with just general good health stuff (avoiding having rows of too many late nights, eatting healthy etc etc).

I had a remission for 2-3 years and cause I was completely well for some time, thought I was over this illness I stopped completely paying it any heed. That was a huge mistake and I havent been able to recover from the relapse back into it... After years of wellness, I was j feeling a bit run down one day (I think i caught something) and chose to ignore how I felt, ignored to rest.. and here I are all over again.

Take care.. but yeah I do think you have a good hope of fully recovering if you take care. Keep giving your body whatever sleep its needing (the body does a lot of healing at that time)