Neurotoxin protocol - Questran

Discussion in 'Fibromyalgia Main Forum' started by Manwithfibro, Apr 27, 2010.

  1. Manwithfibro

    Manwithfibro New Member

    Has anyone experienced remission on this drug? It definitely flares this fibromyalgia. Makes me think toxins are the culprit. Any advice, history, help?

    Thanks Tim
  2. Lono83

    Lono83 New Member

    I've heard of Actos being used to prevent the intensification of symptoms when starting this drug.

    Why don't you get some of the lab tests done to see if any of your biomarkers are abnormal?

    It's pretty straight forward to get MSH, VIP and C4a tests done through LabCorp. The LabCorp in my area will also process the MMP-9, VEGF and TGF-Beta1 tests, though I've heard some folks need to go through Quest to get some of these tests done. Test numbers are here -
  3. simonedb

    simonedb Member

    hey lono, others
    this is timely because I am deciding what tests to get done, I want to once and for all rule out a bunch of stuff and have found a doc that is willing to do any tests I want
    I was thinking of doing the ones redlabs/vip offer: xmrv (curious), lymes, CPn, and a few others, I already did their cfs panel one 17 mo.s ago (pre-xmrv) so i know my nkc are off as is my gut.
    are you familiar with the dif places offering testing like igenex and vip and the ones you referred to lono, like if one is better than the other?
  4. Lono83

    Lono83 New Member

    When I mentioned VIP, I was referring to vasoactive intestinal peptide. It's easy to get tested through LabCorp (test code #10397). Not everyone with CFS symptoms has low vasoactive intestinal peptide, but a subset of folks (like me) do.

    The treatment options for low VIP are not that great (and are complicated), but I think it's worth knowing if you have really low levels and it's easy to get tested.
  5. simonedb

    simonedb Member

    Hey Lona
    I am very curious what you know about these less used biomarkers for cfs like vip and msh and mmp-9 etc
    I hadnt considered them much before but am beginning to research because of some of these posts.
    So what is the difficult treatment for low vip and any other things like that, that you are aware of?
    Its interesting, I dont have a science/med background, but one of the instigators of my cfs was cholecstectomy 20 years ago and also an appendectomy at same time (just for the heck of it no emergency but they figured since they were in there they would do me a favor....nice, now they finally "discover" appendix has a function with digestion, argh! no kidding, everything in body must have a purpose) and I am curious if perhaps not having these organs related to digestion, well perhaps they could for example, the appendix, release vip for all we know.

    lono, also, reading at labcorp it looks like problems with vip would be indicated by hypermotility,do you have that? I don't, if anything, the opposite lately, may have had that right after surgery for awhile but not much now, do u think that rules out need for that test then?[This Message was Edited on 04/30/2010]
  6. floyd000

    floyd000 New Member

    May not necessarily be complicated to get. It is compounded by Hopkinton Pharmacy in Hopkinton, Massachusetts. Primarily Dr. Shoemaker and a few others are writing the prescriptions. I have heard others getting VIP. It is currently in clinical trial but I think it's still possible to get it prescribed through another doctor. The good thing is that most people don't need to take it for very long (several months). See Shoemaker's rambling blog on it:
  7. simonedb

    simonedb Member

    thx floyd
    i was thinking of testing for it, didnt realise it can also be supplemented, i skimmed shoemakers post you gave, will look more later.
    do long story short, do you use it and have deficiency in vip? the little i read about a lack of it sounds more like hiv effects not cfs.
    His rant reminded me i want to test for staph too.
  8. Lono83

    Lono83 New Member

    Re: VIP treatment – from what I’ve heard the treatment difficulty is not in getting a prescription to VIP (called Aviptadil). As floyd000 mentioned, at the moment there is a compounding pharmacy that carries it. The complication is that I’ve heard of a number of people who have VIP deficiency but were not helped by the medication, though some people apparently have had dramatic improvements from VIP. Dr. Shoemaker says that the VIP medication won’t work if the patients still has mold exposure or hasn’t been able to eliminate/lower their inflammation. I don’t know if this is true. I wish more doctors were looking at this so we could all benefit from the feedback.

    Re: VIP and CFS – there have been several articles published in the medical literature hypothesizing that VIP deficiency could cause all of the symptoms found in CFS. Most of these articles require payment to read, but the summary to this one lays out many of the main points –-- “Postulated vasoactive neuropeptide autoimmunity in fatigue-related conditions: a brief review and hypothesis.” Clinical & developmental immunology

    Re: hypermotility – I have a whole bunch of gastrointestinal problems and also can’t eat gluten. Before I got sick, I never had any of those problems. Also, keep in mind that most people get tested for VIP because their doctor is concerned it is too high (called VIPomas). With CFS symptoms, if you have a problem with VIP it’s going to be because it’s too low.
    At the present time there are literally hundreds and hundreds of medical journal articles about the many important functions of melanocyte stimulating hormone (MSH) and vasoactive intestinal (VIP). But the medical profession does not recognize MSH deficiency or VIP deficiency as an abnormal health condition. It’s an enormous blind spot!

    My opinion is that it isn’t because of any kind of conspiracy. It’s more of a result of MSH and VIP having many different functions, so they overlap many different medical specialties, and therefore no one has really claimed them. The situation is a little better with VIP (there’s some decent research being done), but it’s really bad in the MSH area. There’s money being spent looking at MSH treatments for weight loss and to increase libido. Out of the numerous things that MSH does, those are about the least of my concerns (but those are the biggest potential markets for pharma companies). Still, things are moving forward.

  9. Lono83

    Lono83 New Member

    Here's a recent web posting about this:

    Lyme test negative but [symptom] intensification on Questran (CSM)

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