Invisible Illness Awareness Week 2016: Our Voices Need to Be Heard
Never heard of Invisible Illness Awareness Week? You're not alone. Jody Smith sheds a little light to make it more visible
Discuss the article on the Forums.

Does CFS F..k Up Your Immune System?

Discussion in 'Immunological' started by debored13, Oct 26, 2017.

  1. mermaid

    mermaid Senior Member

    Messages:
    598
    Likes:
    1,068
    Cornwall, UK
    @justy oops - just managed to delete the start of this message and now I can't remember what I wrote! Oh yes, just to say that my GP doesn't know what to do with my results either, and besides there is no immunologist in the whole of Cornwall it seems.

    Hopefully one day they will get to grips with all this evidence, but I fear it may be too late for me by the time they get there.

    I told my GP that my herbalist was giving me Astragalus to help with my immune system, and after my last immunoglobulin test done last week she just put a note on my results saying 'the herbalist it is then' (I don't think she realised that I had been on it already and my results are still below range, but did improve a tiny amount. )
     
    justy likes this.
  2. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

    Messages:
    2,014
    Likes:
    5,104
    USA
    I've been sick for 27 years now. During the first 17 years I caught a lot of colds/flu that would take me months to get over. Now for the last 10 years I haven't caught anything, but I have less stamina than I did in my earlier years, probably due to old age (63).
     
    pattismith likes this.
  3. Learner1

    Learner1 Professional Patient

    Messages:
    1,203
    Likes:
    1,998
    Pacific Northwest
  4. debored13

    debored13 Senior Member

    Messages:
    377
    Likes:
    178
    Vermont, school in Western MA

    i really, really, really don't want to give up carbs, but if none of the mito supplements I try work, and there's no other cure, I may try a keto diet. I would never use keto for anything less than a serious chronic illness, as I love carbs and don't believe ALL the hype w/ keto. but it does seem to follow that if pyruvate oxidation is blocked, getting acetylCoA via ketosis is the way to go.
     
    echobravo likes this.
  5. ash0787

    ash0787 Senior Member

    Messages:
    301
    Likes:
    580
    yes it does, I have viruses so often its sometimes hard to define when it starts and stops, I feel normal then suddenly feel really ill and then it passes after an hour, also recently bacterial infections that a) wouldn't normally get before cfs b) for normal people it could heal naturally but in this case require antibiotics c) require 3 or 4 course of antibiotics rather than 1 and the doctors can give no explanation for this
     
  6. bertiedog

    bertiedog Senior Member

    Messages:
    998
    Likes:
    1,346
    South East England, UK
    I might be able to report something that has benefited my dysfunctional immune system. I am one of those that come October through to April seem to pick up every virus that is going usually making me ill for about a week at least but often longer. I always have a severe sore throat with whatever virus it is and often get gut symptoms too.

    Due to the results of my American Gut stool test done late May this year which showed 87% of Bacteriodetes, low diversity and not much good stuff, in early September I started making alterations to my diet. I eat lots of vegetables, good fats, nuts and am gluten free cos I have to be. I stopped flaxseeds which feed the bacteria I already have too much of, switched from the usual sort of yoghurt containing L Acidophilus to Activia which contains some of the Bifido bacteria I really needed. I also added Acacia powder to this yoghurt 3 times daily and started to rotate various probiotics like Prescript Assist which is soil based, Symbioflor 2 which gives the beneficial E Coli, L Fermentum, and L Reuteri. Currently I have just started L Rhamnous. It's a protocol that Ken from CFS Remission gave me.

    There have been very obvious beneficial changes to my gut function. Whereas previously I struggled with constipation, this is now only a problem on an odd day and the stool is much more normal. The SIBO I have been suffering with for years s hardly noticeable now. Everything feels much calmer and my digestion is much better.

    I have also been taking herbals too kill off the pathogenic bacteria like Proteus and Citrobactor that showed up. Neem seems to really suit me, Berberine seems too strong for me at the moment, I have had lots of Oregano oil without any issues.

    Now to get to the main point of this post is that this past week I suddenly started feeling unwell last Saturday. By Sunday it was obvious I had a nasty virus, sore throat, nil energy and horrendous pain in my calf muscles but also shooting pains throughout my body. I was so fatigued slept 3 times on Sunday, this is unusual for me because normally I am able to manage over 8000 steps daily.

    I continued in this way for 3 days feeling really awful but by the 4th morning I could tell I was feeling better. My throat was still sore but my calf muscles were becoming less painful and I had some energy and was able to go out for a bit of shopping for the first time. I knew I would have to rest after this which I did but I had stopped that awful feeling of pain and feeling half dead and very depressed and hopeless. (I am fortunate that most days I actually do feel well but I crash quite easily).

    What I am wondering is this my immune system reacting as it should do to a nasty virus? I felt really terrible for those 3 days and was literally floored, the closest thing to having flu but without the raised temperature, just up around 36.6. Although I did have one sweating attack and had to change my clothes after this cos they were wet (sorry if this is a bit gross).

    Yesterday was a really good day, all energy back, able to go out both in the am and in the afternoon and still good in the evening. Just a residue of a sore throat and actually did 9500 steps which I can see is probably a bit stupid but I felt so well. Today I am still fine but not quite the energy of yesterday.

    I hope I haven't spoke too soon and I am making sure I still rest more than usual because my throat is still slightly inflamed.

    Pam
     
    ljimbo423 likes this.
  7. ljimbo423

    ljimbo423 Senior Member

    Messages:
    524
    Likes:
    810
    United States, New Hampshire
    You also might want to consider the amino acids lysine and leucine. They both can be converted to acety-COA directly. They work like this with or without a keto diet.

    https://en.wikipedia.org/wiki/Ketogenic_amino_acid

    Jim
     
    pattismith likes this.
  8. debored13

    debored13 Senior Member

    Messages:
    377
    Likes:
    178
    Vermont, school in Western MA
    thanks for the tip, I have looked at CFS remission. His ideas re: probiotics seem good but also i'm skeptical that gut bacteria are the primary cause of CFS, even though I don't doubt his story or that they are involved. I may try some heavy duty probiotics at some point
     
    pattismith and Learner1 like this.
  9. debored13

    debored13 Senior Member

    Messages:
    377
    Likes:
    178
    Vermont, school in Western MA
    Thanks for the tip, Jim. I'm still kind of exhausted from a manic "research and figure out this disease in one day" kind of thing I did yesterday :p but I will research and check these out.
     
    pattismith and ljimbo423 like this.
  10. bertiedog

    bertiedog Senior Member

    Messages:
    998
    Likes:
    1,346
    South East England, UK
    I think I feel the same way but when I look back at my history it would be a classical case of inherited poor micro biome from my mother, destruction of the good bacteria I would have had by frequent doses of penicillin and then in my early 20s repeated courses of Septrin on top of other antibiotics in the Winter for throat infections. So by my late 20s I guess my microbiome would have been extremely depleted of any good bacteria.

    Following up from this I had 3 traumatic childbirths in 5 years, the last one with the loss of 4 pints of blood which probably causes the hormonal issues I have. On top of that I had a very hyperactive child and it was the most stressful period of my life so I can fully see why my immune system was dysfunctional with a ridiculous amount of stress in my life and very little support. Oh yes forgot to mention I also had one of the most stressful jobs there is in that I was a part-time teacher in a local school with many kids who didn't want to be there and yet a headteacher who naturally wanted excellent results.

    Pam
     
    pattismith likes this.
  11. helios

    helios

    Messages:
    83
    Likes:
    32
    Brisbane
    i can relate to your situation. I regularly used to get colds each year and used to suffer from hayfever each year but it changed as my health slumped. Now I hardly ever get the flu or cold despite practically everyone else in the office or friends/family having it. I noticed the few years I did get hit, I had been having a good spell of health beforehand, then I would catch the flu and it would take me weeks to get over it, then when I did my sense of well being would pick up better than normal for a few days then it would fade into regular CFS tiredness.

    I always found it bizarre that I would miss out on getting a cold or flu despite being run down at the time with CFS. I mentioned this to my CFS doc and he said it was quite common with his CFS patients and he assumed it was because their immune system was too weak to react. The headaches, fever, muscles aches, head full of mucus, tiredness is not actually from the bacteria.virus but rather the reaction of your body's immune system fighting it. So while all your family might be sick with the flu, don't assume that you got lucky and it skipped you or your immunity is so great it blocked it.

    I have signs of both under-active and overactive immune system. I suffer from MCS badly and my IgE levels got measured once and I was told my reading placed me at the top 0.02%. I also have been diagnosed with lymphopenia and my NK cells, T cells, nuetrophils, dendritic cells are at rock bottom levels (like hiv). I should be a classic candidate for getting the flu each year. Its like my Th2 system compensates for the weak Th1 system. If what my doc said about immune system being too weak to react, then with that theory hiv patients would also never get the flu. For me catching a cold would be a really good sign of improved immunity but it would suck if it took me a month to get over it.
     
  12. pattismith

    pattismith Senior Member

    Messages:
    738
    Likes:
    1,023
    I think after this over active brain activity, you deserve some rest (well deserved) ;)
     
    Last edited: Nov 5, 2017

See more popular forum discussions.

Share This Page