The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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Vasoactive intestinal peptide (VIP)

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by *GG*, Dec 6, 2010.

  1. grapes

    grapes Senior Member

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    Yes, it's crazy that now five days of not taking it, I'm still physically tired. I just wish there was an explanation somewhere of WHY, biologically, VIP can do this to some of us. Maybe doctors don't understand yet, but we are left hanging in our treatment...

    Granted, TGF/inflammation can rise with VIP, and they say it's because of continued exposure, but to what?? I know of someone who felt awful, and she had no mold--her ERMI was way below 2.

    How do you know cholestyramine didn't help? It may have, and your symptoms are related to something else...
     
  2. grapes

    grapes Senior Member

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    Oh and by the way, this was stated by Dr. Acklerey in Tucson and I'm copying it from the Biotoxin Journey website. I have no idea what "down-regulating" is referring to or why:
    • Dr. Ackerley commonly sees people that feel good the first few days and then begin feeling toxic. She believes this is because the body is letting go and down-regulating. If this happens, cut the dosage in half, or to a quarter, for a few days until you feel better and then gradually increase the dosage.
     
  3. aaron_c

    aaron_c Senior Member

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    I say it didn't help because nothing happened except side effects that were to be expected from a drug that lowers cholesterol by binding bile acids. Also VIP appeared to increase my TGF-beta even after a month on cholestyramine, and that was the main thing I was hoping the cholestyramine would fix.

    It's certainly possible that my symptoms aren't biotoxin related--hopefully time will tell.
     
  4. grapes

    grapes Senior Member

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    You know, Shoemaker et all state that we are still being exposed to a biotoxin (like mold) if VIP makes the TGF go up...and that we need to remove the exposure. That's all that's stated. But I never took that to mean that the cholestyramine we did didn't do the job. It just meant we need to remove the continued exposure. I hope I'm right as I'd hate to think I have to do the CSM all over again!!!!
     
  5. aaron_c

    aaron_c Senior Member

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    Shoemaker says a little more than that! He says that if VIP makes TGF-beta go up then one of three things is wrong:
    1. You are still exposed to problematic mold
    2. You have Lymes Disease or
    3. You have too many CD4+ CD25++ T-reg cells being converted to Effector T-cells (my notes say he calls this a TH-17/T-Reg imbalance). He doesn't say why he thinks this is happening, but fixing this imbalance is how Losartan is supposed to lower TGF-beta. Shoemaker says VIP has been shown to increase CD4+ CD25++ T-reg cells, so perhaps this is how VIP can, in some cases, increase TGF-beta?
    I took these notes from here.

    In my own case my house's HERTSMI-2 came back clean and I've been told in no uncertain terms by a Lymes specialist that I do not have Lymes disease, so I am pursuing the third option.

    Shoemaker also says that some of his patients appear to get sick from the initial biotoxin exposure and in spite of removing themselves from the exposure, taking cholestryamine, and really doing everything but VIP, they don't get better. I believe he suggests this might account for a subtype of ME/CFS. At the time of the talk I read (within the past five years?) he was particularly excited about VIP's potential to treat this very recalcitrant group.

    Which is to say that his treatments give me a lot of hope but very little certainty. I hope you find a way to make it work for you @grapes, and I hope you'll keep us all updated.
     
  6. grapes

    grapes Senior Member

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    Yes, I've seen those three...plus a 4th that people mention a lot. Am waiting on my second Mycometrics to arrive to see if I brought that ERMI way down. As far as Lyme, the test only showed a past exposure--absolutely nothing active and the pronouncement was No Lyme. So I've called in to my regular doc to get him to prescribe the tests for Treg and TH-17. I've also heard repeatedly it could be that I haven't eradicated the staph in my nose, so working on that right now, too.

    I still wish I could get an answer as to why the VIP spray makes me feel so bad. It's now almost a week since I stopped, and I still have bad physical fatigue. Very weird. My best guess is that it's power was too much for my mito...and my mito suffer due to the lack of oxygen from hypoperfusion.
     

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