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First real cold since I got ME/CFS (6 years) and all symptoms temporarily disappeared

Discussion in 'Immunological' started by leokitten, Jan 7, 2019.

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  1. leokitten

    leokitten Senior Member (Voting Rights)

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    I’ve just recovered from the first proper cold I’ve ever gotten since I fell ill with ME/CFS six years ago. The first 3-4 years I never once felt even a wisp of a cold/flu coming on, and the last couple years maybe twice I felt under the weather like a cold was coming on but it never did. The ME immune activation or general disease process seems to prevent it. Prior to ME, I would get a cold every year or two, just average like everyone really.

    Not sure why I got a proper and good cold now that lasted over a week, but I’m happy I did because after the cold turned the corner and started improving I experienced a complete disappearance of all my ME symptoms.

    I mean ME completely and utterly gone. If it weren’t for the cold symptoms still affecting me I would’ve felt totally amazing, but even with it I distinctly felt that I was ME free and otherwise healthy again.

    Not even during my best days on the keto diet do I ever feel even close to like the ME is completely gone, just some significant symptom improvements.

    My cold symptoms were really strong and debilitating on their own during the first half of the cold, so I couldn’t tell you if the ME symptoms went away during that time.

    Given what I experienced for the first time and can say for certain, I would hazard a guess that the reason the ME temporarily goes away, at least in my case, is because as the immune system finishes killing the cold virus it sends strong signals to reduce activation and ramp back down. These signals also seem to turn off the chronic immune activation that appears to be major (or the only) driver of ME.

    For those interested in metabolic dysfunction changes, I even did a one day experiment during this time where I ate a lot of carbs on purpose. Normally this would cause major PEM to the point that the next couple days I would be totally bedridden. It did nothing!
     
    Last edited: Jan 7, 2019
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  2. Trish

    Trish Moderator Staff Member

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    Fascinating experience, @leokitten. Thanks for sharing it. Others have mentioned similar phenomena, but not all of us.

    How long did the reprieve last, and did you feel any better or worse than usual once the effect had gone away, and did your ME return suddenly or creep back? Sorry, so many questions. Please don't feel obliged to answer them. It would be great if pwME who get a cold were to be studied with blood taken daily during the process to see what happens biologically.

    But - we have also had a very different story from another member in the last few days where the outcome of a cold was near disaster when it turned to pneumonia, so I wouldn't recommend deliberately exposing ourselves to infection. Here's @Louie41's story.
     
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  3. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    I had thought we had done a poll on whether people had less, had the same or had fewer colds and flues following the onset of their ME, but I can not find it. We certainly have discussed this before.

    There definitely seems to be a subgroup that have an hypo active immune system getting every bug that is going and another with a hyper active immune system that seems to fight off all the seasonal bugs effectively. However no one seems to have looked at whether these two subgroups have any other linked features or what distinguishes them from each other.

    I also relatively recently read comments that some people's ME improves immediately before succumbing to a bug, which then really hits them hard.

    If we were to do a poll on how effective people's immune systems are what would the options be? Something like this?

    Since the onset of your ME do you
    - get fewer colds and flues
    - get arround the same amount
    - get more colds and flues
    - have had periods of getting more and/or of getting fewer bugs

    A problem in answering this question is that some of us have little contact and/or deliberately avoid contact with people carrying such bugs, so do not really know what our susceptibility is. Also for me at least it is hard to distinguish between episodes of PEM and emerging colds and flues. It these episodes do not result in a full blown infection, I don't know if it was just PEM or if I successfully fought off an emerging illness. Further I wonder if there is any link to the subgroups that either cope well with innoculations/vaccinations and those that react badly to them.

    I previously when trying to continue working seemed to get every bug going, and the flue jab seems to trigger a relapse in my ME, however more recently I don't seem to get many bugs, but I do actively avoid sources of infection.
     
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  4. Trish

    Trish Moderator Staff Member

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    I think there are 2 questions to look at here. Do we get infections more often, and what happens to our ME symptoms during the infection. Probably best to specify colds, since flu is more serious and may have different effects on ME.

    Maybe something like this. Feel free to set up a poll, or I will if asked.

    Do you get colds more or less often than before you had ME, and do your ME symptoms get temporarily worse, stay the same or get better when you have a cold? Choose one of these options:
    1. Colds more often, ME improves
    2. More often, ME stays the same
    3. More often ME gets worse
    4 Neither more nor less often, ME improves
    5 Neither more nor less often, ME stays the same
    6 Neither more nor less often, ME gets worse
    7 Less often, ME improves
    8 Less often, ME stays the same
    9 Less often, ME gets worse
    10 It varies, none of the above.
     
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  5. leokitten

    leokitten Senior Member (Voting Rights)

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    3 days. The ME is creeping back not any sudden return.

    I wonder if it’s, like I mentioned, the immune system signaling to ramp down as the cold virus is killed off and therefore also temporarily shutting off any ME chronic immune activation or, like the ME chronic infection people believe, the ramped up immune system during a cold/flu does a temporarily better job at suppressing the chronic infection driving the ME.

    Almost all ME research to date suggests to the former not the latter.
     
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  6. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    I wonder if it would be better to present this as two separate questions, one about frequency and one about impact on the ME rather than giving lots of options mixed together.

    Obviously that does not pick up any interactions, but given the smallness and selective nature of our sample, how clear would the interactions be anyway. Longer term we could use our all polls collectively as the basis of a new symptom check list to trial with a better selected sample population to try to establish any patterns and interactions.

    [edited to clarify]
     
    Last edited: Jan 7, 2019
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  7. Trish

    Trish Moderator Staff Member

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    You're probably right. Do you want to do it?
     
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  8. andypants

    andypants Senior Member (Voting Rights)

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    Hard to tell if it is more often, because most of us are not as exposed as we used to be when out and about:) Maybe neither/nor would be the appropriate answer.

    I have experienced a sudden 3 day remission due to a cold, regardless. If you wouldn't mind Trish, I think a poll would be interesting.
     
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  9. Trish

    Trish Moderator Staff Member

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    Last edited: Jan 7, 2019
  10. leokitten

    leokitten Senior Member (Voting Rights)

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    I think I did the already existing poll somewhere, though I thought they shouldve added three more:

    11. Almost never, ME improves
    12. Almost never, ME stays the same
    13. Almost never, ME gets worse

    I would’ve answered 11 not 7 in that poll if they had these.
     
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  11. Trish

    Trish Moderator Staff Member

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    I've simplified it as was suggested into separate questions about frequency and effects on ME. The forum software only allows up to 10 options in polls.
     
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  12. JoanneS

    JoanneS Established Member (Voting Rights)

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    It is quite a difficult question to answer succinctly. I do get colds less often. Although I am exposed to less viruses due to lack of contact with others, I have been in contact with family members with colds and not contracted it.

    I did have a marked improvement as in less ME symptoms, although it wasn't a complete recovery, after flu. The improvement lasted for several months.This was several years ago, and it probably is last time I had any obvious virus. It could have been a complete coincidence, but it has never happened before or since.
     
  13. leokitten

    leokitten Senior Member (Voting Rights)

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    Following up after another week. I was ME symptom free for 3 days maybe even 4 days, as you know it was quite hard to delineate how long because of the cold symptoms and how some overlap with ME symptoms.

    My symptoms only slowly creeped back, and not all of them at the same time. I still feel generally better than I did before the cold and some of my ME symptoms have not returned yet, but there are some confounding factors as I haven’t been working and have been pacing really well recently, especially during the cold I naturally had to rest a lot.

    After the cold was well over the first ME symptoms to come back were the strong brain awake/wired but tired feeling which makes it impossible to sleep at a regular time, the early night gut irritation and related itching attacks, and my lower leg and foot aches and pains like they aren’t getting enough blood. If I remember correctly I think those were the first ones to relapse.
     
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  14. JES

    JES Senior Member (Voting Rights)

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    I wonder if this cold theory could tie in with the metabolic trap studied by Robert Phair. I brought the subject up with him, but he didn't comment on it yet. According to the theory of Phair, the tryptophan trap could be triggered by a stressor like a cold exposure, so I wonder if activation of a similar stressor can also have the opposite effect and take us out of the trap and back to the normal state temporarily. If IDO1 or a similar enzyme is working more normally under cold exposure, then that state could presumably persist for some time after the cold until tryptophan gets accumulated again and things break down.
     
  15. andypants

    andypants Senior Member (Voting Rights)

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    I’ve had a couple of days now spontaneously walking a lot more and feeling really good doing it, even pushing a stroller around the neighborhood.

    I should have known I would wake up with a heavy cold today! This is the third time I have had two days of spontaneous remission only to be hit with a full blown cold on day 3. Shivering under two heavy duvets at the moment and likely to stay there for the next few days. No PEM, just the cold (the two feel very different to me). It’s been 3 years or so since the last time, but then I’m not around people much even without lockdown restrictions.

    I will be getting a Covid-19 test of course, and mr pants too, but this feels very familiar and much more likely to be a cold considering the different incubation periods. He reports a slightly sore throat, how is that fair!

    Babypants seems fine, even after getting vaccinated yesterday (not Covid, the usual selection for a 3 month old). I’m avoiding kissing him and washing my hands before handling him, but other than that it’s hard to keep a distance from a breastfeeding baby.
     

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