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PEM vs. med reaction vs. viral die off?

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by Gingergrrl, Jul 20, 2014.

  1. Gingergrrl

    Gingergrrl Senior Member

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    I was wondering if you guys have a way to distinguish between PEM, a negative reaction to a med/supplement vs. a viral die-off? And I know there are no easy answers!!!

    Yesterday I felt a little better so I went with my husband to do some errands (bank, Vitamin Shoppe, and to pick up my dog) but I was not driving and really did minimal walking. I felt fairly okay at the time and glad to get stuff accomplished.

    I also increased the dose of Monolaurin from 1200 to 1500 mg (full dose is 2400 mg/day) and added a new supplement called AHCC (which also has NAC and beta glucan in it.)

    I woke up in the middle of the night with nausea, headache (which is very uncommon for me), and slept very poorly. Today I have increased fatigue, muscle soreness, increased cognitive symptoms (also unusual for me) and dizziness.

    My gut feeling is it is a combination of PEM and the increased/new supplements but my husband thinks it is a viral die-off (as Monolaurin is a super strong natural anti-viral.) When I took Monolaurin at full 2400 mg/day dose for months, it was the best I had felt except it caused severe GI symptoms. But my stomach is much better now and can tolerate more.

    So how does someone know what is the cause? I am afraid I will not be able to tolerate the real anti-viral that will be prescribed to me in about a week at my follow-up appt.
  2. minkeygirl

    minkeygirl Is Jim Jones alive and well on PR?

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    There is no such thing as viral die off. That's only for bacteria. You can feel like crap when the viruses don't like what we do to try to stop them from replicating.

    The only way you are going to be able to try to figure it out is to stop everything new and add each one slowly. Or stop one thing at a time and see if you start to feel better.

    All antivirals are different. All because you can't take one doesn't mean you can't take another. Don't look for problems that aren't there.
    Hanna, SOC, Valentijn and 1 other person like this.
  3. Gingergrrl

    Gingergrrl Senior Member

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    @minkeygirl I was also under the impression that the term "die off" was only for bacteria but my husband disagreed! I am wondering though when you said that you can "Feel like crap when we are trying to stop the viruses from replicating" is there a good term for that process, other than "die off?"

    I do believe that Monolaurin is a potent anti-viral that stops the viruses from replicating although not sure at what level compared to a prescription anti-viral like Valtrex or Famvir?

    And you are totally right that I should not look for problems that are not there (it is only when I feel sicker like today that my mind starts all the "what if" situations.) I just need to wait one more week to find out which viruses I actually have and what will be prescribed to me. I just hate waiting.
  4. minkeygirl

    minkeygirl Is Jim Jones alive and well on PR?

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    Yes it's called Feeling like crap. I have no clue about the power of monolauren. I couldn't even take one pellet but I have no problem with acyclovir or Famvir.
  5. Gingergrrl

    Gingergrrl Senior Member

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    @minkeygirl thanks and I have heard that before that many people cannot tolerate Monolaurin so maybe the fact that I have slowly healed my stomach to tolerate a good amount (though still not the full dose) may mean that I will be able to tolerate the anti-virals? Just a thought?
  6. minkeygirl

    minkeygirl Is Jim Jones alive and well on PR?

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    I don't know what your gut has to do with antivirals. Lots of people can't tolerate monolaurin or other A/V.s I can't take Valtrex. It's just part of it.

    Trying to find a reason for everything is exhausting. Some times there are no reasons.
  7. Gingergrrl

    Gingergrrl Senior Member

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    I understand that sometimes there are no reasons. What my gut has to do with it is that so many meds/supplements can cause me severe nausea (where others are fine with it) that I am worried that the anti-viral may do the same.
  8. minkeygirl

    minkeygirl Is Jim Jones alive and well on PR?

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    Stop worrying about things you have no control over. So if you get nauseated you do, and you try something else. You're going to make yourself crazy worrying about it.
  9. Gingergrrl

    Gingergrrl Senior Member

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    Okay thanks and you are right! :D
  10. Valentijn

    Valentijn Activity Level: 3

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    Certain bacteria release toxins when they die, but as mentioned above, that doesn't happen with viruses. It looks like monolaurin might work by removing the protective envelope from certain viruses, which might be getting your immune system all hot and bothered if that helps with it detecting and fighting the virus.

    So if your symptoms feel like the reaction you'd have normally to a virus, that might be the effect of it working. I haven't found any mention of side effects, and it's something present in small amounts in a lot of things, so the monolaurin itself might not be capable of causing side effects - though with ME patients, all bets are off :rolleyes:
    justy, MeSci, SOC and 1 other person like this.
  11. Gingergrrl

    Gingergrrl Senior Member

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    @Valentijn Thanks and I think it is a combination of PEM and the increased Monolaurin fighting the viruses that I am reacting to. It's a natural supplement from coconut oil and it has been the most helpful of everything I've taken so far except for nausea every time I try to increase the dose back up to the 2400 mg.

    My goal is to be on both a prescription anti-viral and continue all the natural anti-virals to kill the viruses from all sides. I really am willing to tolerate potential nausea and any other side effects if it works in the long-run.
    MeSci and Valentijn like this.
  12. soxfan

    soxfan Senior Member

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    @Gingergrrl43- Sometimes I get nausea when I take my vitamin supplements...If I don't have enough in my stomach I will really feel bad for about an hour. My husband who is a pharmacist says it is a common effect with a lot of people. For some reason the minerals in the supplements can upset your stomach....
    MeSci, Valentijn and Gingergrrl like this.
  13. Sinclair

    Sinclair

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  14. xchocoholic

    xchocoholic Senior Member

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    Keeping a symptom diary will help. Include foods, drugs, supplements and activities.

    You should recognize a pattern after awhile. I used a red marker to mark important changes.

    It's important to have a baseline tho. For ex, most people eliminate all common food intolerances at once, then add each food (in it's purest form - organic, no fillers) back to look for a reaction. I always gave it 3+ tries.

    Also, I'd never have figured out how many of my symptoms were from OI without using a bp hr monitor. This took me about 4 years of research because I didn't understand dysautonomia / pots. Duh ! My clue was that I feel healthy (tension in head, heart and lungs are gone) after being supine for 60-75 minutes. My hr doesn't reach resting rate until the last 15 minutes.

    Same for blood glucose problems. A monitor showed that I feel yucky if my glucose is under 80. And it never got over 67 when I tried the Modified Atkins Diet. I've since retired this.

    You may see patterns quickly but not always. My ataxia simply vanished after 1 year on diet.

    And these may or may not change over the years. My PEM is milder now, less neuro symptoms, but my OI keeps me down. I still get the same reactions from gluten, dairy, corn and soy but they're not as strong. I can eat bacon now tho. ☺

    Tc .. x
    Last edited: Jul 21, 2014
  15. Gingergrrl

    Gingergrrl Senior Member

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    @Sinclair Thank you and that thread was really helpful. I am now learning about the term IRIS reaction as opposed to HERX (not saying either have happened to me yet but I will soon be taking an a/v.) I think in my case yesterday it was a combination of PEM and nausea from increasing the monolaurin. I stuck with the increased dose a second day and was okay so I am going to keep slowly increasing it back to the full dose and see what happens.
    SOC and MeSci like this.
  16. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Everything happens for one or more reasons. Working out what those reasons are is another matter, especially with ME!

    It doesn't help that reactions can occur days, weeks or longer after we change something we are doing.

    Symptom diaries can sometimes identify causes, but not very often from my personal experience. It's very frustrating - shall I stop this, shall I start this, shall I increase or decrease that?o_O

    Is it certain that you have one or more viruses, @Gingergrrl43?

    BTW, antivirals, like other meds, often have more than one effect. Some have immunomodulatory effects, which may be the basis for why they help some people.
    justy and Gingergrrl like this.
  17. stardust

    stardust

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    Can you tell me what brand of Monolaurin you are taking? It sounds like something I might want to try.
    Thanks.
    Gingergrrl likes this.
  18. Gingergrrl

    Gingergrrl Senior Member

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    @stardust The Monolaurin I use is from my ND but can also be bought at Vitamin Shoppe (in the U.S.) It is by "Ecological Formulas" and comes in 300 mg or 600 mg. I have both bottles which is allowing me to slowly titrate back up. I honestly felt significant improvement while taking 2400 mg/day but my stomach couldn't tolerate it at that time so I stopped completely and went back to square one.

    Now that I am correcting the GI issues, I am able to tolerate the Monolaurin again. I will be taking Monolaurin and several other natural a/v's in conjunction with the prescribed a/v that I will get next week to hit the virus(es) on both fronts.
  19. Gingergrrl

    Gingergrrl Senior Member

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    @MeSci The only confirmed virus at this point is EBV (with very high levels when tested back in Feb) and I just got tested for all the viruses at OMI and find out my results on 7/28.

    Which a/v's that you mentioned also have immune mod effects? The Monolaurin I take also has Inosine in it but in a super tiny dose.
    Valentijn likes this.
  20. Sinclair

    Sinclair

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    Wishing to hear on the results of these tests :) It seems to me that you were not tested for enteroviruses (the Richardson / Chia theory), Am I wrong?
    Gingergrrl likes this.

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