Surprisingly good outcomes for people who get ME/CFS after Mononucleosis (Glandular Fever)
Sometimes ME/CFS emerges after mononucleosis, or glandular fever. Simon McGrath shares results from a long-term follow-up study from Haukeland University Hospital in Norway...
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Can You Beat This?

Discussion in 'Immunological' started by bertiedog, Mar 23, 2014.

  1. bertiedog

    bertiedog Senior Member

    I am trying to put a bit of humour into my sad tale. Would you believe I have got my 7th virus since last October.

    The majority of them have been ones that affect my throat making it very sore and this affects my energy making it very crap. But on top of these fairly common for me throat viruses which turn into infections I am now on my 2nd cold since February. I went years without colds (but with the throat viruses) but I did get one last winter and now I have got a very heavy one passed to me by my partner.

    I had felt crap last Sunday with a different sort of virus that gave me a very sore throat and also a severe migraine. I felt rubbish for a couple of days and then a bit better but it wasn't to last because of my partner getting this severe head cold. The sore throat never left me from last Sunday.

    On top of these types of viruses I also had a very nasty virus of the Norovirus in January which was shockingly violent and took me a week to get over that.

    I have to take a replacement dose of steroids (6mg Prednisolone and 2.5 mg hydrocortisone) plus 2 1/2 grains dessicated thyroid. I used to wonder if I was at Addison's level but as I didn't go into crisis and didn't take hardly any extra steroid with the Norovirus I definitely don't think I do have this. My body always responds to just a tiny bit of extra steroid and would overreact to the high doses they use in hospitals.

    When tested a couple of years ago at Breakspear I did have 5 Herpes-type viruses over the range but nothing much else showed up apart from the need to use oxygen 3 times daily to boost the low oxygen they found in my cells after mild exercise. The oxygen concentrator does help me to feel better practically every time I use it but has done nothing regarding the virus issue.

    Usually I am much better in summer and don't pick up everything going then. I can spend quite a lot of time outdoors in the fresh air then but always having to pace what I do like everyone else.

    My immune system is rubbish but this year is horrendous will I ever feel well again? Blood tests have shown a mild neutropenia and always I have low white blood cell count but my GP never says anything much about this.

    justy likes this.
  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

    australia (brisbane)
    only 5 of the herpes viruses??lol. i think if your showing immune dysfunctions like u say then theres a good chance those viruses are reactivating as well as keeping immune system down where u keep catching colds etc. Is your doc treating these issues in any way?

    good luck.
  3. SOC

    SOC Senior Member

    I dunno if I can beat your record, but I've tied you. ;) I don't think it's all that unusual in PWME, actually. The problem is that we don't get tested for all the pathogens, much less tested at one time, so many of us (much less our docs) don't realize that we have multiple infections all at the same time. Not surprising if you understand immune dysfunction in ME/CFS, but most doctors don't.

    I'm forever having ear/sinus/throat/respiratory infections, although that's improved a lot now that I take low dose (1 tablet daily) Equilibrant continuously. We found it helps when I was taking it for Coxsackie and Parvo. The doc took me off it when I cleared those two, but I started getting the respiratory infections again, so we tried the Equilibrant again just to see. Sure enough, the ear/sinus/throat infections are way down. Who knew?

    Norovirus is a nasty one! Very sorry to hear you had to deal with that on top of everything else.

    Have you tried anything for immune support?
  4. bertiedog

    bertiedog Senior Member

    Thanks for the replies. I did take Immunovir for several months but it didn't seem to make any difference. I have also taken Artesunate for a period but again no difference.

    I have some Inosine in the cupboard but as I also get frequent migraines I never know if the medication is making things worse and then give up. Many of the herbs seem to give me daily migraines.

    The other big problem I have is that many of the meds block the effect of the Prednisolone and then I feel dreadful with no energy to do anything much whereas normally I can lead a sort of life even though limited. I have spent a long time looking up drug interractions with the steroid and sure enough one of the commonest is antibiotics and many herbs so again I try and manage without antibiotics. I think the only one is Azithromycin that isn't metabolised and also Penicillin but that doesn't work on my throat infections anymore I guess because I have had so much of it since a child (I am 66 now). I have only taken 2 short course of abx through this winter despite so many viruses.

    So basically the answer is that I am not having any treatment for my IS. I do take lots of supplements especially for methylation but cannot tolerate more than 400 mcg active folate otherwise its terrible migraines! We really don't seem to be able to win with this foul illness. Not sure if I mentioned this but my IS was rubbish before being on the steroid, in fact it was worse with more severe infections especially ones that hit my gut, apart from that Norovirus I don't have gut infections anymore.

    Sorry @SOC that you also suffer very badly with viruses and respiratory infections. I have tried Equilibrant in a very limited way but I believe the herbs are vasodilators and as I suffer with POTS that isn't good. Also not sure if I run into this problem of the herbs blocking the Pred too so probably would only be able to take a very low dose.

    heapsreal and SOC like this.
  5. rosie26

    rosie26 Senior Member

    Hope summer hurry's up for you @bertiedog. We are on our way down into winter, not looking forward to it.
    I sometimes go 2 years without a cold then I get 3 in one year, I guess making up for the years I didn't get them.

    I have no idea how many herpes viruses I have. I don't think I have ever been tested.

    The thought of catching norovirus makes me feel on edge. My brother was sick with it last week, along with his daughter, he was so weak. It went on for a whole week.

    Hope you pick up soon. x:)
  6. Martial

    Martial Senior Member

    Ventura, CA

    Have you ever been tested for CVID? That could be a possibility, at least good to rule out.. Though you mentioning these issues only happening more recently makes it less likely.
  7. bertiedog

    bertiedog Senior Member


    I had never heard of CVID until i looked it up! I don't think that can be it because I don't usually have any problems at all with my lungs they seem to be quite strong, its much more my throat that is permanently not right with different shades of red/purple plus soreness.

    Roll on summer is what I feel! Glad to say I am not too ill with this heavy cold just fed up with having to blow my nose so much plus the glands in my neck are a bit sore too.


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