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Does CFS F..k Up Your Immune System?

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

  1. Mary

    Mary Senior Member

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    Thanks @pattismith - actually I already take all of that, except for the B2, which I react to badly. And I take liquid methylB12 orally instead of hydroxocobalamin. I did injections several years ago, for a couple of years, but they made no difference. I seem to do best with the liquid. I also take d-ribose and folate. I was just hoping maybe there would be some magic thing I hadn't tried yet! ;) These supplements do help though, I was worse off without them.
     
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  2. Mary

    Mary Senior Member

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  3. TiredBill

    TiredBill Senior Member

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    In my case, I don't get sick very often, but when I do I'm generally down for the count.

    Sicknesses that my (healthy) wife would shrug off send me to bed with debilitating "man-flu" :D

    Bill
     
    Last edited: Oct 26, 2017
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  4. pattismith

    pattismith Senior Member

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    :lol: But Mary, I found my cocktail here on PR, so you couldn't miss something :)

    I must admit I have started all supplement together with high doses, because it was more or less a survival question for me at that time, but it worked (I went from a risky position to a more safer one)! Of course I still struggle to find the right doses and forms for the major vitamins and co factors....
    I stopped D ribose as I didn't find any effect. We know we are all differents, so it is always difficult to give our own cocktail so I only gave the general plan. :thumbsup:
     
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  5. Diwi9

    Diwi9 Senior Member

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    My ME/CFS fluctuates. I experience low-grade fevers for a few days every couple of weeks. I often feel like I'm getting sick (sore throat, swollen lymph nodes, sore muscles), but the symptoms will dissipate after a few hours, then return the next day. Haven't had a true cold/flu since my relapse last summer. Strange disease, and it seems we are all a bit different.
     
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  6. debored13

    debored13 Senior Member

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    i feel so much worse than i did three months ago and i took this time off school to heal now i'm getting worse. and i have to go back to school in like two-three months (end of january--what's that?) maybe two?? i am starting to freak out.. i don't have a treatment plan outlined
    if i could even just get back to where i was and not be having crisis and being bedridden...
     
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  7. alex3619

    alex3619 Senior Member

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    I am not sure we can say the immune system is not working to any extent. It is probably better thought of as acting abnormally, or dysfunction. Some parts are underactive, some overactive. For example, if there is a prolonged post viral response it might indicate that the immune system is still overactive. Its the immune system, not the virus, that triggers most of the flu like symptoms. Influenza can damage the lungs and kill you that way. Enteroviruses might attack lungs, muscle and gut. Yet the typical flu like symptoms are immunogical, and can persist for a great many months after the infection is cleared.

    The downside is you feel sicker longer. The upside is this might confer increased resistance to the more dangerous effects of these pathogens.
     
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  8. notmyself

    notmyself Senior Member

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    i'm the opposite,i don t catch nothing, everyone was sick with the flu around me,except me..i'm not sure what's better..but in your case i will do some tests to see your immune status and work on strenghting it..if you are recently ill it can be that you still have an active infection going on..
     
  9. echobravo

    echobravo Keep searching, the answer is out there

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    That looks like a good list of supplements to try to support blocked mitochondria. Which doses and brands have you found to be working for you?

    I understand B1 might be important for PDH enzyme function (presumably blocked in ME). Do you take a specific form of B1? Does co-enzymated/bioactive versions of B1 exist?

    Lipoic acid, that’s the same as ALA?
    L Carnitine Fumarate?
    In the multi b - does it include the P-5-P (B6) and 5-MTHF (B9)? Also is it B2 as R-5-P you take?

    Creatine, I have tried the HCL variant (I think @Hip recommended it). Did you notice improvements? It is supposed to “save” a lot of methyl groups (CH3) in the body.

    Have you considered glutathion? Or read about someone who saw benefits from taking it wrt mito optimization?

    Also, I am a bit bewildered by carb intake. Fluge Mella found that pyruvate oxidation seems to be reduced due to downregulation in PDH enzyme complex. Energy demands will increase glycolysis process in plasma (conversion of glucosis to pyruvate). This causes a buildup of pyruvate, and this will be converted to lactate (and maybe methylglyoxal?) - causing many of the PEM symptoms. So, my question is, are we somehow carb intolerant? Will eating too much (how much is too much for each of us?) carbs (glucose) cause a buildup of puruvate (hence lactate) in our cells, even if we are “idleing” (low energy demands in muscle, mentally and stresswise). Where would that glucose go if our cells cannot use it (PDH is blocked)? Or is it so that the PDH enzyme is only partially blocked (correlated to ME severity?) and that we can actually utilize a certain amount of carbs for energy production, but if we go over that “daily glucose limit” we get the malaise symptoms. @Murph, you seem to have a pretty good overview of the latest research - any thoughts on this?

    Also a bit sad to read in Fluge Mella paper that they also saw indication that ppl w ME might have problems utilizing fat as energy. I had believed that a Keto diet might provide some energy, since fatty acids convert to Aceryl-CoA directly, bypassing the PDH enzyme completely.

    Edit: spelling..
     
    Last edited: Oct 27, 2017
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  10. pattismith

    pattismith Senior Member

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    this disease can have spontaneous improvements, so don't panic. Is there a doctor that follow you?

    Lysine can be also very helful of you have to deal with herpesvirus-like infections, and fighting herpesvirus also help fighting persitant chlamydiae infections. I take 1 gr per day for many years.


    I didn't notice improvements with Gluthation, nor creatine, nor NAC (look at the links I given in my previous post, you will find warnings about creatine use and interest of the keto diet for PDH deficiency)

    but I did notice improvement with other mito-cocktail ingredients.

    The Thiamine I found the most helpful are the injection, so when I am bad I go back to injections, and between, I try benfotiamine or Allithiamine, but it seems that I still need Thiamine injections from time to time...

    B6 I take 5P5

    B2 I take currently Riboflavine but I plan to try R5P

    B3 I currently take Nicotinamide and stopped Nicotinamide riboside, but I plan to give one more try in the future.

    I also take a multivitamine, selenium, iode, etc

    I don't take any methylB12 or methylB9 for now, I will see later...
     
    Last edited: Oct 28, 2017
  11. raghav

    raghav Senior Member

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    I used to have this problem. I will catch a cold just on taking a glass of cold water or coming out of an airconditioned room. I will sneeze for around half an hour. Then out of desperation I used to take cetrizine. Then I tried Ashwagandha and it controlled the problem of sudden flu like symptoms. I am still taking ashwagandha. You may want to try the Himalaya brand. It is good quality and cost effective.
     
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  12. debored13

    debored13 Senior Member

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    i occasionally take ashwaghanda but was worried that if the problem with cfs is an overactive immune system, that it would be bad
     
  13. raghav

    raghav Senior Member

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    Try the smallest dose of ashwagandha (half tablet of Himalaya 250 mg ) - 125 mg for a fortnight and see if there is any flare up in your immune symptoms. You may also want to try cordyceps. It is an immune modulator and also helps with mitochodrial energy boost.
     
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  14. notmyself

    notmyself Senior Member

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    why would it be bad..ashwaghanda works more on the adrenals,i don t think it have a huge impact on immune system, i'm overactive i guess since i don t get any infection ,i didin t notice any problem from ashwhanda..it was actually good for sleep
     
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  15. IThinkImTurningJapanese

    IThinkImTurningJapanese Moderator

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    Here's something you might want to see,

    The Real Reason You Get Sick After A Stressful Period Has Ended
     
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  16. justy

    justy Donate Advocate Demonstrate

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    This was my experience for many years, before it turned into the hardly ever catching things. Nowadays if I do catch something I get low level I’ll, but it drags on for weeks and weeks, dragging me down and making the M.E overall worse.

    My M.E Dr says we have an Acquired Immune Deficiency Syndrome, but that that name is taken. He also explains that I have both an under and overactive immune system. I also have MCAS.
     
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  17. mermaid

    mermaid Senior Member

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    I too have had immune dysfunction issues right from the start of beginning to be ill (and that's over 15 years now, although I didn't get really unwell until just over 10 years ago when I developed what i subsequently got diagnosed as ME/CFS).

    I cannot remember the last time I had proper 'flu, but I have many many colds, mostly very minor, so minor that no one else would know I was ill, but I often feel lousy for several weeks with them. My immune system issues also show up on blood tests (which I have only had in the past 3 years at my request), as I now have immunoglobulins, IgG and IgA below range.

    I had whooping cough around 8 years ago which gave me a bad relapse, and bronchitis around 2 years ago. That time I had begun to use Oil of Oregano, and that is my 'go to' help for all my bugs so that is worth a try too to help, although it doesn't solve the basic problem.

    I take many supplements including nearly all the mitochondrial support ones. I also see a herbalist who has recently given me Astragalus as my immune system got worse this summer after the health service insisted on changing my thyroid meds rather drastically (with good intentions, but I am concerned about the results....).
     
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  18. mermaid

    mermaid Senior Member

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    Just out of interest @justy does your ME Dr do the immunoglobulin tests on you as I know he tests for a lot of things? I suspect that mine have been wonky for years given the ongoing immune dysfunction I have had, but only had them tested 3 years ago on my request. I knew nothing about these tests until reading up on PR (thanks PR!).

    Like you, I tend to get things low level, or rather it feels as if my immune system is fighting it for a long time, and I feel exhausted while it's going on.
     
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  19. justy

    justy Donate Advocate Demonstrate

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    Hi, nice to see you around!

    Yes, if necessary he does. Mine are all ok, apart from a low ish IGG3, however my IGM is consistently elevated- even the NHS have seen this, but dont know what to do with it!
     
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  20. perchance dreamer

    perchance dreamer Senior Member

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    I recently did a genetic test and am appalled at the number of immune mutations I have. For me, the question isn't really does CFS eff up your immune system. It's what role immune mutations have in causing CFS. Of course, chicken or egg questions are really hard to answer with CFS.
     
    Last edited: Oct 29, 2017

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