The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Instant short term vs. gradual long term effect from modulation

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Ninan, Aug 12, 2014.

  1. Ninan

    Ninan Senior Member

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    Many PWME:s who have effect from immune modulators like antivirals, LDN and doxycycline seem to react slowly, but get better over time. It seems it can take six months or more before they start to get better but then they can feel better for many years. For me it's the other way around: The effect is instant but brief.

    I have effect within 24 hours. LDN and doxycycline does the same thing: The day after taking the first dose I get more energy and then comes the worsening of my psoriasis. After some time, between a week and a month, the energy effect goes away (and my PSO goes back to normal) and I have to increase the dose to keep the effect. If I stop doxy completely for some time (months) I again get energy from low doses. But it only lasts for so long.

    Recently I've started taking a very low dose of Famvir, 125 mg/day. I didn’t expect any reaction from such a low dose but I just realized that it is worsening my psoriasis and, I think, gives me swollen lymph nodes in the neck. I usually feel pain in my armpits but this neck thing is kind of new. It's possible that I have a little bit more energy too, it's hard to say what's what since I take other medications too. Of course I can't tell if it will be the same (neither LDN or doxy ever gave me anything but energy and PSO -- the swollen lymph nodes is new) but I guess I'll find out. If nothing else it will be another thing to alternate between to try to stay above my basic ME level which is a real horror (completely bed bound, communicating with notes).

    Anyone who recognizes this? I wonder if it's the fact that I'm pretty ill and that the thing that is wrong with my immune system has gotten "strong" enough to deal with any treatment I try. My ME beast (whatever it is :alien:) gets hit instantly but fights back -- adapts to the new modulator -- pretty quickly. It's kind of annoying since I can't seem to get long term benefit from anything I try.
     
    Last edited: Aug 12, 2014
    Gingergrrl likes this.
  2. ahmo

    ahmo Senior Member

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    @Ninan This is a timely post for me. I'm about 6 weeks into LDN, taking about 2mg (> from 1.5mg less than 1 week). I noticed over the last couple days, especially after a 2.5 hour outing yesterday, that I'm feeling worse w/ exertion, as well as next day. I've been wondering if it was just that my expectations had changed, I'm generally feeling better, so *shouldn't* be experiencing this degree of PEM. But I am, and it's generalized, pain in arms and legs, as well as tired brain.

    I've also just increased my thyroid rx a couple days ago, which puts an added burden on adrenals. So maybe it's the combo. I do know that the LDN has seemingly provoked some detox response. Not severe, I'm managing it w/ coffee enemas, which I used intensively for 5 months prior to LDN. But still, each of these things adds its own little burden to body's ability to cope. Not the same response as your's but....:rolleyes:
     
  3. Gingergrrl

    Gingergrrl Senior Member

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    @Ninan I was curious if you had taken Famvir before of if this is your first time? Did your doctor recommend the low dose or just something you tried on your own b/c of med sensitivity? I am currently taking Famvir 500 mg 2x/day. The first couple days I did feel more energy (now not sure if just random coincidence?) but the main thing I've noticed is that it gives me a headache about 80% of the time and nerve pain in my face (mostly on the right side) which was brand new for me. Have you experienced this?
     
  4. Ninan

    Ninan Senior Member

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    It's my first time.

    I always start low, whatever I try, or I get adverse effects, even though they disappear after a week or so. For me modulators have effect even at a low dosage and since I have to keep increasing the dose to keep the effect, starting with a higher dose would shorten the time I can use it.

    I haven't noticed anything but worsened PSO, swollen and aching lymph nodes and possibly my throat is a bit more sore than usual. Some energy too, I think. If I had started with a higher dosage I'm sure there would have been more adverse effects.

    I know there are different views on whether antivirals work by modulating our immune systems or by killing viruses but I'm convinced that the effect I get is from modulation, or it wouldn't come after just 24 hours.
     
    Gingergrrl likes this.
  5. Gingergrrl

    Gingergrrl Senior Member

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    @Ninan From what I have read and been told, it seems like the anti-virals stop the virus from replicating which helps the immune system to kick in and fight the virus.

    Many people use the term "die off" for this process which seems fitting to me b/c it is stirring up and killing the virus that was previously replicating unchecked. But hopefully someone much more scientific than me can jump in with a better answer!
     
  6. Ninan

    Ninan Senior Member

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    I know, but noone really knows if viruses are why antivirals make us better sometimes and worse sometimes. Dr Montoya, for example, has used antivirals for a long time and seems to have come to the conclusion that the reason they sometimes work (and sometimes make us worse) is that they are modulators. In my case it's obviously so (why would die-off give me energy?), in other cases it may be harder to say what is what.
     
  7. Adlyfrost

    Adlyfrost Senior Member

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    NJ
    I only do herbal immune modulators but yes I have noticed some thing similar: feel better at first then side effects.

    I believe IM's may be swinging immune system too far to an already ineffective TH1 response, causing an auto-immune response. Psoriasis is an auto immune condition so this might be a plausible explanation.
     
  8. Ninan

    Ninan Senior Member

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    Do the side effects appear when you've started to feel worse? I feel better at first and the side effects come at the same time (psoriasis takes a day or two to show itself but I think that process starts right away). They vary with energy. No energy, psoriasis.

    Psoriasis is an autoinflammatory condition, Prof Edwards has explained a bit about it in the thread "Do MEs cause CFS".
     
  9. Adlyfrost

    Adlyfrost Senior Member

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    NJ
    Hmmm not exactly. It depends. If I feel the virus is active and I have long lasting fevers and am in bed a lot then the IM's make me feel better to a point: for a few weeks. Then shortly after I get rapid pulse, insomnia which escalates to violent stomach attacks ESP at night.

    If I keep taking them I get stiff and scream and moan during my sleep and tachycardia and debilitating nervousness that lasts for days along with stomach pain that persists. At that point I have no choice but to stop. When I have carried them that far my recovery seems to be 10x as long than if I hadn't taken them.

    For obvious reasons have to use them sparingly and as last resort. Sorry not sure if that info is helpful when dealing with pharmaceuticals. Also never experienced die off. They just work with me so well it is miraculous .... That is, until they start hurting me and then seemingly causing damage.

    Also not all are created equal. The more effective they are the worse the side effects.
     
  10. Ninan

    Ninan Senior Member

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    That sounds pretty awful. :(

    That last sentence doesn't fit my experience, though. Things that make me better don't have much adverse effects. Things that make me feel awful don't make me better.
     
  11. Charles555nc

    Charles555nc Senior Member

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    I had a huge herxheimer with molybdenum, and recently went back on LDN, after a long break, and finding that it helps. And i was heavily deficient in zinc when I first got diagnosed.

    1. Over coming werid deficiencies will help us all, I was massively zinc deficient, so I took alot and then take a little zinc every other day (over coming deficiencies not mass dosing forever).

    2. Immuno compromised people have yeast in their brain...molybdenum detoxifies a certain compound of the yeast that disrupts the brain cells and immune system.

    3. Also got pretty convinced 1000 to 3000iu a day of vitamin D is helpful, more, mega doses may lead to a weakening of the immuno, as vitamin D is a neuro steriod, with forms 1,25D and 25D. Most doctors dont check both. Again, 1000 to 3000iu will help deficiencies, without producing a possible steriod like reaction that mega doses may bring on.

    my personal experience is that there is no progress without herxheimer reactions, but side effects and herxheimers reactions often get confused. Benedryl helps alot in telling the difference between the two. I took molybdenum yesterday and had a devastating herxheimer reaction today...the quicker I took benedryl, the quicker the pain and burning goes away, without suppressing the immune system- (but dont take benedryl everyday!)
     
    Last edited: Aug 21, 2014
  12. Valentijn

    Valentijn WE ARE KINA

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    Are you suggesting that taking molybdenum is killing off Lyme bacteria?

    If not, I think you might be badly misusing the term "Herxheimer". Perhaps you mean that it's helping with detoxification? If anything, molybdenum should help ameliorate Herxheimer symptoms in a Lyme patient being treated with antiobitics. It certainly should not be causing the Herxheimer reaction.
     
  13. Charles555nc

    Charles555nc Senior Member

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    Yeast release toxins which disrupt the immune system and cause damage, as I said, the yeast can be found in the brain with the immune system becoming compromised. It is not a stretch of belief that detoxification of the yeast biotoxin, correcting a molybdenum deficiency, and killing of lyme, or another local infection, all going on simultaneously. Molybdenum does alot of things other than detoxing like cofactors, and enzymes.

    Its hardly dangerous to try yourself, and perhaps you should have a lighter tone with people trying to help you.
     
  14. Ninan

    Ninan Senior Member

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    Noone has really answered my question so I'll rephrase it:

    Could there be a difference between those who are mildly/moderately ill and those who are severely ill so that members of the first group react slowly to modulation and have long term effects while the severely ill react instantly and only have short term effects?
     
    vli likes this.
  15. Adlyfrost

    Adlyfrost Senior Member

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    NJ
    Thanks- been on the fence with vitamin D- not sure if it was helping or hurting but this explains a lot!!!!! And I love the idea of using benedryl to tell if something is herx-ing or giving a bad side-effect, but is herx-ing really just histamines? Anyway, glad benedryl is helping you with reactions.
     
  16. Charles555nc

    Charles555nc Senior Member

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    The herx is your body's reaction to the toxins/dying bacteria, but ya the body's surprise reaction is usually alot of histamine. Its worked for me and I really regret it if I dont take a benedryl right away when I notice a herx.

    My herx symptoms are burning in the lungs, mid section pain, feeling like Im gonna die, and a massive increase in pain all over.
     
    Adlyfrost likes this.

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