Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Small fever change my PEM!

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by MartinK, Mar 27, 2018.

  1. MartinK

    MartinK

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    Hi all!
    amazing fact it happened last week for me! I do not know how to understand it and dont know, what my body do...

    But...
    There was a problem with my application of 4ME from KDM. Few applications was "OK", but fifth was really bad - next day was really physical hard for me (some work), and I saw bulge on the leg, red stain from 4ME. It was classic day for me, what end with exhaustion and continues with 2 days of PEM...
    But in the evening, I started to knock and feel start of fever...I had the idea that PEM would be terrible next days, when I went to sleep...:-(
    BUT!!! - next morning I felt that something had changed...morning still a little fever for a while, but I with more energy, better mood, good feelings...!!!!
    After lunch was fever completely gone - and my body inflammation was gone with it!!! (normally is inflammation one of my hardest problems - 24/7 - when I touch on something cold, its really relaxing)
    That day...PEM was gone, my inflammation was gone...I was better on my feets...no muscle pain....great mood...if I was healthy!!!!
    Next day - without PEM too!
    But my inflammation and other problems they were coming back..third day - the same condition as before :-(

    I do not know what happened in my body! Anyone here think of something?
    I do not understand this body reaction...
    I do not understand, what my body produced or suppressed in this cause...

    I know this, my problems of inflammation are:

    PGE2
    LPS
    IL-8
    ?MCAS?
    ?Lyme?

    I do not know if it is related to my PEM problems...
    So much I'd like to know more...this two days was really amazing!
    I think that what causes me inflammation is making my CFS!!! ...days without inflammation was as if I were born again. Thanks god! I need more... there is the way...

    All best for everyone! Hope for some opinions!

    Martin
     
  2. Wishful

    Wishful Senior Member

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    My guess is that it's too complicated to understand at this point. Cumin has more or less the same effect on me--blocking PEM--probably by interfering with some process between inflammation and PEM symptoms. Just which process is being affected by cuminaldehyde, I have not the slightest idea. It just works for me. Maybe your incident had the same effect as cuminaldehyde, or maybe it affects a different link the the chain of processes. My suggestion is to hope that it occurs again, and to keep good notes to help figure out just what is responsible.

    During the first few years of my ME/CFS, I had occasional, temporary remission, where I would feel healthy again for a few hours. The first two times taking prednisone provided similar temporary relief from symptoms, but it never worked after that (tried two or three times). A few supplements or spices had similar responses.

    It's also possible that you had a temporary remission that just happened to coincide with your 4ME (whatever that is). One incident isn't enough to know what was responsible.
     
    AdamS, Mel9 and TenuousGrip like this.
  3. JES

    JES Senior Member

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    @MartinK This is what happened to me a few years ago, I started a thread about it here. As you describe it, it's like a switch that turns most of the inflammation off. Maybe the immune system is busy fighting the cold virus or maybe it's just generally a better working immune response that is triggered by the fever. Difficult to say. Catching a cold and sleep deprivation are the only two consistently working methods I have found to reduce this inflammation.

    Related to fever, another interesting thread was recently opened here.
     
  4. MartinK

    MartinK

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    Hi all!
    @Wishful and @JES thanks a lot for opinions!
    This was 100% from fever - bad reaction on 4ME. Most people who using 4ME dont feel this dramatic changes after few applications what I search.
    KDM told about bad reaction - mast cell activity.

    I have a similar feeling after the sauna, but in a much lesser extent. This feelings from fever was really amazing!
    Little bit euphoric, but inflammation was definitely gone - I confirm! :)

    I simply do not understand what the immune system produces. So I'd like to understand these processes more...

    Perhaps this event could have been a clue to me...but Im not an immune doctor and I do not know how to handle it.

    Maybe it was a demonstration that lyme is not my active problem, but that my immunity does something wrong and that's why I'm getting worse. So many questions...

    What I never tried was to suppress the immune system.

    THIS POST from @Hip is amazing, I'm trying all this and cumin now, but I would still like to get to the processes that trigger PEM and examine them with a look at my immune responses, intolerance and inflammation.

    There is one another thing, what help me in past - ozone...oxygen supply...it also greatly reduced my muscular pain and inflammation.

    I'm working on repairing the intestine now, I hope it will solve at least some of the problem. (lactic acid out from leaky gut, zonulin, lps...)

    Martin
     
    Mel9 and Hip like this.
  5. Wishful

    Wishful Senior Member

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    I tried a few immunosuppressants (cyclosporin was one), which had no effect on my symptoms, although prednisone provided complete temporary remission the first two times I tried it (and never worked again after that). Many immunostimulants make my symptoms much worse.

    My view is that the symptoms arise even with low levels of immune activation, so reducing that a bit with immunosuppressants doesn't have much effect. However, small increases in activation above normal have large effects on ME/CFS symptoms.

    If you're really interested in how your symptoms relate to immune activation, you could try some immunostimulants and see what happens. I haven't noticed any permanent effects from things that make my symptoms worse temporarily, so it's just temporary extra lousiness if it does work. :ill: Elderberries seem particularly potent at stimulating my immune system (and making me feel worse).
     

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