Julie Rehmeyer's 'Through the Shadowlands'
Writer Never Give Up talks about Julie Rehmeyer's new book "Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand" and shares an interview with Julie ...
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Sick but never sick

Discussion in 'General ME/CFS Discussion' started by digital dog, Aug 24, 2015.

  1. digital dog

    digital dog Senior Member

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    There is a joke in my family that I am the healthiest sick person alive.
    I never get colds or flu or anything that my family gets.
    Last Christmas every single person in my extended family got flu except me.
    If this is the case, should I be avoiding LDN? Surely I am the last person that needs it if my immune system is working?
    I have hashimotos and ME for twenty years so I am obviously far from well.
     
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  2. Tammy

    Tammy Senior Member

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    Not getting the flu or colds is not necessarily a good sign that your immune system is working........in fact it can be a sign that it isn't working properly which I know goes against normal deduction of reasoning. There are a group of people with me/cfs that also don't get colds or flu. I'm one of them. My immunologist/cfs specialist told me that when I start getting colds again or the flu that it would actually be a good sign for me. I don't know the physiology behind this. I have had maybe 3 colds in the last 19 years and maybe one or two bouts of the flu. The times that I have had a cold.......my cfs symptoms felt better overall. Weird I know!
     
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  3. digital dog

    digital dog Senior Member

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    Tammy,
    This is interesting as I feel better when I have a cold or flu too. I feel dreadful but it is a different (and welcome) dreadful. When I had the flu ten years ago now I was really cheerful. It was proper flu and I was in bed for three weeks with all sorts of symptoms but I felt relatively well.
    So, perhaps LDN would be a wise move then?
     
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  4. Wayne

    Wayne Senior Member

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    Totally agree with @Tammy. I also rarely get colds or flus, but I interpret that as sign of not having the vitality my immune system needs to mount an effective response to just about any kind of pathogen. I remember as a kid, I would almost always feel way better than normal in the days after getting over a cold or flu, which I interpret as my immune system had done a thorough, and much needed house cleaning.
     
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  5. minkeygirl

    minkeygirl But I Look So Good.

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    Me three.
     
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  6. gregh286

    gregh286 Senior Member

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    Me too.
    Count in one hand number.of colds and flus i had in last 5 years.
    Funny enough....i took 20mg prednisolone in march after a real bad spell.
    Woke up next day with flu.
    Best day i had in 2015.
    Must be only people on earth that openly welcome flu.
    Ldn immune modulator....think it can do good.
    Takes months to see benefits based.on many facebook users.
    Could be another reason why alcohol helps as its immunosuppresant.
    But the payback after drinking isnt worth it...
     
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  7. Gingergrrl

    Gingergrrl Senior Member

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    Same and no cold or flu since I got ME/CFS even when everyone else in my household is sick. I also have Hashimotos like the original poster in case that means anything?
     
    alkt likes this.
  8. Snowdrop

    Snowdrop Rebel without a biscuit

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    I never considered that. I'm exactly the same in that regard. The healthiest sick person. Never catch anything and it's been like that for years.

    So, I started LDN at ~.5mg or less last week. What a difference. I haven't come out yet on a LDN thread, I wanted to wait a bit but So far so good. Iv'e been doing things this week I haven't done in a long time.
     
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  9. Sushi

    Sushi Senior Member Albuquerque

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    I agree with Tammy. I also never get colds or the flu but LDN helps me considerably. There are different aspects of the immune system. Some may be in overdrive and some in underdrive.
     
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  10. alex3619

    alex3619 Senior Member

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    This is an important point. Its an immune system. Large numbers of different things all working on a similar theme. There are bound to be subgroups in the ME population with different immune function.

    I don't get sick very often now, but when I do I can be in decline for many many months. I slept better with LDN but there were no other major responses, and I eventually abandoned it to try other things with the same money. It was worth a try though. The only way to see if you are a major responder is to try it in my opinion, and its relatively cheap.
     
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  11. dannybex

    dannybex Senior Member

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    This is precisely why it was callled CFIDS at one time, as in Chronic Fatigue and Immune Dysfunction Syndrome. The immune system isn't 'deficient' as some claim, it's dysfunctional. The th1-th2 balance is messed up. Never getting 'real' colds or flus is one of the key, classic symptoms.

    If we could get real, decent fevers -- that burn off bugs, viruses, etc., -- then we wouldn't be chronically ill.
     
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  12. GracieJ

    GracieJ Senior Member

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    I am a bit jealous! Not really. But, my case has been one of catching EVERYTHING that comes along, then staying sick for weeks or months unable to throw it off. I still have to be careful.

    @Gingergrrl I, too, have Hashimoto's. This will be one interesting puzzle when sorted, all the up and down dysregulation.
     
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  13. ahmo

    ahmo Senior Member

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    no colds or flu, Hashimoto's. I :heart: LDN.
     
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  14. snowathlete

    snowathlete

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    I also don't get colds. It's not true of everyone with ME/CFS but it is common. I think it is a clue that ought to be pursued properly. In my opinion it is not that our immune system is underactive, but rather, overactive (at least with regard to the parts that fight viruses). Normally you get invaded by a virus and it takes time for your body to mount a response so you get a full blown cold/flu. But I think our response is on all the time, hence an invader doesn't stand much chance of getting any kind of foothold.

    This is interesting about LDN. Can you tell me more? I know that LDN rates highly on ME/CFS people's list of things that actually provide some benefit. I also know that it is used in ulcerative colitis with some success as well, and as I have that too I plan to try LDN very soon; perhaps as early as next week.
     
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  15. Scarecrow

    Scarecrow Revolting Peasant

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    No colds or flu since I relapsed in 2011 but I used to get colds really badly in the 15 years or so before that when I was very, very mild but not before that when I was moderate. It seems that for me just being on the crap side of mild is enough for my immune system not to respond as it should.
     
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  16. Debbie23

    Debbie23 Senior Member

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    Exactly the same. At school just before I was diagnosed, I was in a constant cycle of getting a cold/ bug/ virus, crashing out, struggling back to school working myself into the ground trying to catch up again, getting a cold/ bug/ virus, crashing out, struggling back to school working myself into the ground trying to catch up again. Continuing until I became too ill for school altogether and then totally collapsed. And that's continued, just without rushing to catch up on schoolwork further overtaxing my system, since I have been diagnosed. Like you I seem to catch everything and it knocks me for six, I struggle to get rid of it and it makes my ME worse and for a prolonged period.

    Interestingly my dad is different to myself in this respect even though our symptoms are often very similar just at differing severities. He's more like the other posters in that he rarely gets colds etc.
     
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  17. Scarecrow

    Scarecrow Revolting Peasant

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    Makes sense.
     
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  18. snowathlete

    snowathlete

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    I don't know about that last bit. I don't get cold or flu, but I do occationally get stomach bugs and when I have had those I have been very ill with very high fevers.

    @Scarecrow - like you, when I was very mildy affected with ME/CFS working for around a decade but not quite right with some ME/CFS symptoms, I got every cold and flu going. Not only that but when I got a cold I would have it worse than everyone else who had the same one. It was only when I got much more sick with ME/CFS, resulting in my diagnosis, that I stopped catching them.
     
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  19. Effi

    Effi Senior Member

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    that is pretty much my experience too: lots of recurring ear and sinus infections, flu, etc. while I was already sick but still more or less functioning. Since ME got worse I hardly get anything anymore. The 'overactive immune system' theory really matches my illness experience.

    @dannybex what you point out about dysfunction instead of deficiency makes a lot of sense to me. It would also explain the spontaneous remission stories, i.e. when the dysfunction goes back to normal (even if temporarily). If only we knew how to flip that switch back over to normal mode...
     
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  20. Scarecrow

    Scarecrow Revolting Peasant

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    That's freaky. I almost added in my first post that I get gastric infections. I got norovirus a couple of years ago - it was really nasty.

    My colds were always worse, too. Whenever, I come into contact with someone who has a cold now, I always silently curse them for not being wrapped up at home. I'm convinced I'm going to get it but I never do.
     
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