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Ongoing Immune Reaction - Shingles

Discussion in 'Immunological' started by potbatch, Dec 27, 2015.

  1. potbatch

    potbatch

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    For the last 2 months, my wife has been stuck in what seems to be a state of high immune reaction, with rapidly varying temperature going as high as 38.7. She has a constant very bad headache. When she does anything – even if she sits up – the headache gets worse and her temperature rises. So she has to spend most of her time lying down. She is in constant pain all over her body and very weak and viral. She has had ME for over 30 years but this is the worst she has been. Over the past three years she has had shingles about ten times, most recently a few weeks ago, so we wonder if her body is trying to fight the shingles but never quite succeeding? She now has a bad cold on top of everything else.


    Her headache got so bad in early November that she was admitted to hospital. She had MRI and CT scans and a lumbar puncture but all results were ‘normal’. They did however find that her blood pressure was low, her spinal fluid was moving very slowly and her Babinski reflexes were absent. They decided she had a probable viral infection with meningism and sent her home again. The expectation was that it would just resolve itself but of course it hasn’t. Many weeks on she is still just as ill. We are in the UK so of course understanding of severe ME is close to zero. She is lucky enough to have a telephone consultation booked with Dr Sarah Myhill at the end of February but that is a long way off.


    We were wondering if anyone can suggest any treatments or cast any light on what is going on with her? Why does her temperature rise when she is ‘active’ for instance? Is this her body encouraging her to rest? We are thinking in terms of antivirals, which Dr Myhill may be able to prescribe but until then she is in the hands of our local doctor/GP who gave her 5 to 7days’ supply of acyclovir/zovirax for the shingles a couple of years ago but seems unlikely to prescribe such treatment for the longer period she probably needs. Does anyone in the UK have experience of getting antivirals from their GP for a longer period?


    Any suggestions about any aspect of this would be welcome. Thanks.


     
    Last edited: Dec 27, 2015
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  2. minkeygirl

    minkeygirl But I Look So Good.

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    @potbatch @heapsreal battles with shingles and headaches. He'll see this and can tell you what he does.

    Could you please change your font? I can barely read it. Make it bigger?
     
    Last edited: Dec 27, 2015
  3. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Dear @potbach,
    I don't think that a temperature of 38.7 can be put down to ME/CFS. It sounds to me as if there is another medical problem here. I also don't think we should be recommending antiviral treatment without knowing what sort of virus might be there to treat. Having shingles more than once is unusual and in most cases an indication of a specific underlying immune abnormality. Rather than seeing an 'ME physician' I think you might be better off seeing a clinical immunologist at Leeds Royal Infirmary to screen for a recognisable immune defect.
     
  4. maryb

    maryb iherb code TAK122

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    I forgot to add @Tammy has been using a successful protocol for EBV, I know its not the same virus but it may be useful to give it a try, it involves using l-lysine instead of antivirals plus other stuff, maybe she will look in.
     
  5. maryb

    maryb iherb code TAK122

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    Trust me @Jonathan Edwards , when you feel so sick, too sick to go out anywhere even the GPs and then being admitted to hospital where you are told its probably a virus....you will grab at absolutely anything and realise you are actually on your own with this.

    I was that desperate person, and believe that only a fellow sufferer can truly understand, I also totally understand where you are coming from and respect that, but its a far far distant place from me.
     
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  6. Mij

    Mij Senior Member

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    @potbatch is she menopausal by any chance?
     
  7. Crux

    Crux Senior Member

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    Hi @potbatch ,

    I had consecutive shingles outbreaks for 5+ years, it was torture. The neuropathy was indescribable.

    I didn't go with antiviral meds. The doc said they were immunosuppressive. I'm already on corticosteroids.

    None of the antiviral herbs or supplements worked very well, but B12 helped to an extent.

    The most helpful interventions have been :

    Reducing acidic foods, drinks, and supplements.

    Stopping probiotics, especially lactobacillus types.

    Taking antibiotics that reduce lactic acid producing bacteria. ( So far, penicillins have been the most effective.)

    Some antibiotics have caused outbreaks because, I think they are not inhibiting lactic acid bacteria.

    I know this may seem like a strange way to treat a virus, but it seems that some viruses may be pH sensitive (?)

    My thoughts are with you and your wife.
     
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  8. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Maybe, but that was your decision for you. I don't think on PR we should be making suggestions for desperate members to apply to their wives when the story does not fit with ME and there are a hundred and one other pieces of clinical information we do not know.

    This is an issue which is open to debate but my own feeling is that PR has a duty of care to make sure it does not encourage vulnerable people to make decisions about relatives that might cost their lives, either in terms of adverse reactions or missed diagnosis. There may be another diagnosis that needs to be made quickly.

    If there is a general feeling that giving advice in this situation is acceptable for PR then I have to step down from being a member of the board of directors. If I was still a registered practitioner I might have my license withdrawn in my position. I am not registered any more so that does not apply. Nevertheless, it is a measure of the fact that as someone with medical knowledge in a position of responsibility I have a duty of care and I take that seriously. I think all members should take seriously the idea that as posters here they also have a duty of care to fellow members.
     
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  9. Crux

    Crux Senior Member

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    There are many people here with chronic shingles.
     
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  10. potbatch

    potbatch

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    No, post-menopausal
     
  11. potbatch

    potbatch

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    Please don't resign! I know that your presence is greatly valued on this forum. I understand your concerns but the NHS doctors are simply not concerned about my wife. She has been into hospital, had all the appropriate tests and been sent home again. All the GP offers is pain relief. People with severe ME are simply ignored by the mainstream doctors. For that reason, I am grateful to people on this forum for sharing the benefit of their experience. I know that they are only patients and I treat their advice accordingly - but there is nowhere else to turn to for help. We have to wait 2 months to consult Dr Myhill because she is just about the only doctor in the country who is trying to help us. We are lucky to have got booked in for a consultation at all. She is not taking on any new patients because she is swamped. That is because of what amounts to medical neglect from the NHS.
     
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  12. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Are we sure about that? There are no reports on PubMed of repeated shingles being more common with CFS as far as I can see. There are six hits on CFS and zoster, one of which is a typo, and the others talk about CFS coming after zoster. I cannot see anything on zoster in people with CFS.
     
  13. maryb

    maryb iherb code TAK122

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    @Jonathan Edwards that's why I said I totally understand where you are coming from, I also personally think you provide a much needed medical perspective and have done so on many occasions on PR which was obviously of great help to members. Its not for me to say who should give what advice or when, I was so anti drug before getting sick it practically makes me want to laugh now, and truth be told I would always even now take a natural route first like the l-lysine I suggested, but sometimes desperate situations call for desperate measures. And you can hear the desperation in some posts, its heartbreaking....do you know how much suffering before an appointment could be got at LRI?
    My experience is that doctors in general say they don't treat viruses, it'll go in time.....
     
  14. potbatch

    potbatch

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  15. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I understand that it feels like that. But the doctors you have seen in the NHS are probably doing the best they can for your wife. They are working to the best evidence known. Private practitioners tend not to do that and to my mind that is not 'trying to help' in an honest sense.

    If your wife is actually running a temperature above 38 degrees she needs re-testing for infection or immunodeficiency by a mainstream physician in my opinion. ME/CFS is not known to cause fever in that way. The problem I see is putting everything down to ME/CFS - whether by the doctor or at home. There is no evidence that anti-virals are effective in ME/CFS as yet so there seems no point in following that avenue anyway. Forget the ME label if I were you. At present it does not help much because nobody knows what processes it is a name for. And by saying that I am not saying that there is no such thing as ME/CFS. There obviously is - lots of people have it. But it probably isn't a useful label when it comes to looking for treatment.
     
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  16. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I also totally agree that the NHS is in a state of collapse and that there is neglect. That is why I resigned aged 60. I could not provide a safe effective service even for RA. But you are very unlikely to find anyone outside the NHS with a knowledge of virology and immunology that allows them to do any better. You are very likely to find people who know very little but prescribe all the same.
     
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  17. Crux

    Crux Senior Member

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    I read peoples' posts here on PR, and remember such, because we have this and many other similarities here.

    Of course, if we did not attempt to express this to each other, and ask for suggestions, this would be unknown.

    If we were to not be allowed to offer help to each other here, with suggestions, it would be useless to me at least.

    And if I only sought information and results strictly from ME/CFS studies, I would have very little information at all to utilize.
     
    Last edited: Dec 27, 2015
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  18. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    The problem is that people are not necessarily to know whether they really have shingles. I would be very surprised if any member had had true zoster vesicles ten times. Even in people with lymphoma this would be very unusual.

    I appreciate that helping each other is the whole point of PR. But the freedom to offer suggestions comes with a responsibility of care - even in normal social life. You do not suggest a child goes down to the shops before they have learned to cross the road. With medical issues that sort of consideration comes in all the time in a rather different way. I have had to look after people with rheumatoid arthritis crippled entirely unnecessarily because of suggestions of what to do from friends and relations. I have made the wrong suggestions to members of my family in the past that I regret decades later. We have to be careful. That is why it takes ten years to train to be a physician and learn how to minimise making the wrong suggestions.
     
  19. Crux

    Crux Senior Member

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    Sadly, many people make mistakes advising others. If I had followed the advice of some of the doctors I've seen, well, I would be much more ill.

    When someone asks for advice, especially on a site with many caveats about personal responsibility as here, one should take heed.
     
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  20. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I am not quite sure what you mean by take heed. But I guess my point is, as you say, that even after ten years of training in how to minimise inappropriate or dangerous suggestions, doctors still often get it wrong. It seems likely that people with no diagnostic training will get it wrong at least as often. Unlike doctors they have no legal responsibility, but I think the ethical responsibility must be the same. And the whole point of laws on prescription drugs is that they are dangerous and without restriction inappropriate suggestions may be made that lead to serious harm.
     
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