Epstein–Barr recovery stories - can anyone offer any hope?

[Redstar99]

Hello

DH has been off work since Nov following a virus. Dr is initially saying it was 'post viral syndrome' but the longer it goes on, the more likely it is looking like it could be ME/chronic fatigue syndrome.

We luckily have private healthcare with his work, so most other things have been ruled out fairly speedily. Which is typically how ME/CFS is diagnosed - by elimination & after 6 months.

He did have Epstein–Barr in his system when tested a while after the virus, but I think most of the population have a bit of it in them.

I am clinging onto the hope that it is EB and he will recover sooner than later.

We have a close friend with ME and have seen how debilitating it is. There don't seem to be any ME specialists who you can see privately, the experts appear to be in the NHS, so we are trying to get him onto the waiting list.

I think I am probably going through the denial stage of supporting someone who is likely to have a long term condition!

Thanks in advance...

[Bettertobehealthy]

Hi op
This may not be on your radar , but , low Vitamin D , is thought to result , in some cases , in combination with Epstein-Barr infection, a situation leading to CFS type symptoms.
A low vitD might preclude a strong immune response against EB , it can therefore linger.

It may be advantageous , if you get your DH's level of vit D measured. IF it is low , then improve it , by supplementation , and /or exposure to sunlight. In the UK , at this time of year , there is no UVB in sunlight ( which produces vitD in the skin ).
After mid- April, whenever the sun's elevation is above 45 degrees , then UVB is present. This generally means after about 11 am , and before 3 pm.

IF you can get your DH's vitD level above 100 nmol/L , then he will have a better chance of fighting off that virus. VitD is an immune modulator. Alternatively, supplements of about 3000 IU per day should also raise his level.

There are no downsides to this suggestion , only upsides. !! Vit D is very safe. IF his measured blood level is below 50 nmol/l he is well below optimum.

I have posted quite a bit here on mumsnet , about vit D , search my username , if you think it worthwhile. Or get back to me if you need more information .

Best of luck ,

BTBH.

PS. This NHS lab can do tests for Vit D , if not doctor ordered they charge £29. A blood spot on blotting paper is sent to them , they reply within 1 week., with your result. www.vitamindtest.org.uk/

Here is one of the threads where many people with some similar problems discuss , I did post quite a bit there: www.mumsnet.com/Talk/general_health/2841497-If-you-are-vitamin-D-deficient-what-have-you-been-prescribed . It is a long read but lots of useful information !
.

[Elieza]

I too am taking vitamin d3 supplements as the only ME specialist nurse in Scotland recommended it. I do feel better. That combined with regular acupuncture has made me well enough to return to work. It did take a long time though. No doctors really understand it so paying to go private may not be much help as they too will have no answers for you. It’s a condition that you are left to manage yourself. Despite so many people having it. And don’t even start me on how hard it is to get benefits for a fluctuating condition that they haven’t yet got a diagnostic test for, despite being fully aware of changes in the mitochondria. The sooner they get their finger out and take sufferers seriously the better.

[Redstar99]

Thanks @Bettertobehealthy that is all very interesting & useful. Will look into those tests, a bargain have used a private lab myself before.

@Elieza so glad to hear you are better enough to return to work. I have joined some ME/CFS FB groups, they are full of poor desperate ppl grappling with this awful condition. There is more research happening & the update of the NICE guideline which will hopefully be more helpful than the current one.

Can I ask long did it take for you to get back to work?

[Elieza]

As I understand it, the NICE guidelines don’t even apply to Scotland :-(

OP, It took me over a year to work more than three hours a day. Even after that it took a decade before could do five hours a day. Total joke that we get f all assistance with this condition. We are the forgotten ones. Apparently the number of ME/CFS patients is the same as the number of MS patients ADDED to the number of Altsheimers (sorry, can’t spell) patients. Yet we get no help and are left to self manage. Shocking betrayal.

[namechanged984630]

I had ME and am now completely recovered

[DanglySpider]

I've had it in varying amounts of severity since I had glandular fever as a child. The worst period was being house and bed bound for five years, but weirdly I made a really good recovery after I had gallbladder surgery, a post-op haematoma and seroma which meant a week back in hospital with iv antibiotics - I think it helped to flush out the gut.
The things I found most helpful were: vit d, d-ribose (an energy supplement in powder form), other vitamins and minerals - don't take gabapentin or naproxen - aloe vera juice was slightly helpful (but don't get sucked into getting it from private sellers). Try to get to a point where you can schedule your sleeps/rests throughout the day, and take yourself as low down on the exertion front as you can, monitor that, get that steady, and then, by miniscule incrementals, increase that gently - don't go anywhere near as fast as the docs will recommend, I'm talking maybe go from doing nothing for yourself for three months to trying to insert brushing teeth, kind of thing. The other thing that I was very skeptical of, but did actually help, was CBT. I think it was more that it helped me see a way out of it, but who knows - it helped.
It's a shit place to be, and I know I certainly felt I would never get out of it, but while I recovered I started a degree from my bed, and then after the op, I was practically back to normal within a few weeks, enough to consider working full time. Since then, I've done a MA while producing an indie film, (and I have 4 dcs, 2 with ASD) so there is hope. I'm still not 100% 'normal' - I can't run without triggering a day back in bed, and long/exhausting days knock the shit out of me, like trips out for example, but I have a life mostly. I think I would struggle to work full-time perpetually, but I manage with what I have, and 'just keep swimming'. Good luck, and do pm, if you think I can help any more.