Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Vasoactive intestinal peptide (VIP)

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

  1. *GG*

    *GG* Senior Member

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    Concord, NH
  2. redhummingbird

    redhummingbird

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    I took it for awhile.

    It was expensive and it had zero effect. My doctor's office did a study using it and no one had any benefit from it.

    I've been in touch with 3 Shoemaker patients also who reported similar results.
     
  3. slayadragon

    slayadragon Senior Member

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    twitpic.com/photos/SlayaDragon
    I heard that Shoemaker is now requiring people to get a good score on an ERMI test (suggesting that their home is clean with regard to toxic mold) before he will prescribe VIP for them.

    Apparently he agrees with the contention that this sort of thing only works when people are not living in a moldy environment.

    I would think that living in a place with other biotoxins also would keep it from working.

    I personally doubt that it would be of any help regardless of what sort of environment people are living in. I'd be taking it myself if I thought it would have benefit.

    Maybe eventually he'll report some data that it actually does something though.....

    Best, Lisa
     
  4. xrayspex

    xrayspex Senior Member

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    let us know if you try it lisa
    i have been interested
    i forget, is this related to that peptide by the lady scientist in what the bleep do we know.....whats her name, apparently judy mikovitz had talked with her too about more natural treatments...
     
  5. lono

    lono

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    Aviptadil (currently available form of VIP) - doesn't raise VIP blood plasma levels

    My understanding is that the currently available form of vasoactive intestinal peptide (VIP), called Aviptadil, does not raise blood plasma levels of VIP. I think it's possible this is why it's not effective for many people.

    Dr. Shoemaker's theory is that Aviptadil doesn't work for some people because of ongoing inflammation, mold exposure, etc. I think it could also be because Aviptadil doesn't increase blood plasma levels of VIP. Pharma companies are interested in developing other, longer lasting forms of VIP, but it'll be a while before they are available.

    One other thing to note. I believe many, many CFS/ME folks have low VIP levels (I do). I wish more doctors would pay attention to this. VIP modulates/controls many functions that are haywire in PWCs including sleep, digestion, neurocognitive functions, inflammatory control, etc., etc.

    Donald Staines has written several articles in the medical literature postulating that vasoactive neuropeptide deficiencies could be the cause of Chronic Fatigue Syndrome.
     
  6. redhummingbird

    redhummingbird

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    The Shoemaker patients I'm in contact with were living in 'good' environments so there was no reason for it not to work. Similarly with the study my doctor's office did.

    I agree with Lono. The current form of VIP does not raise VIP blood plasma levels which has nothing to do with living in a 'bad' environment. I very much doubt Shoemaker will report data because the results just aren't there (he is part of a group my doctor is in so they are in regular contact).

    I also think VIP is important-I'm glad to know that Pharma companies are interested in this.
     
  7. lono

    lono

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    Let's just hope that if Aviptadil ends up not being effective for most CFSers, that this won't prevent other researchers from looking into it for PWCs. Also, people who have low VIP and CFS symptoms will almost always also have low melanocyte stimulating hormone (MSH).

    VIP and MSH have many overlapping functions, so it's also possible that you might need to raise both MSH and VIP for many people to get better.

    And as far as I can tell the main interest in MSH medications is in the areas of skin pigmentation, libido and appetite. Out of all the MSH functions, these are the ones I'm least interested in.
     
    Isaiah 58:11 likes this.
  8. mtnwoman

    mtnwoman

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    Elcatonin raises VIP

    Hi folks,,, I was googling about how to raise VIP and I found this forum.

    I have lyme with MCS, low VIP, high C4a, osteoporosis, etc... I am looking for how to raise my VIP... looks like I can treat my osteoporosis and low VIP (and gum recession? and brain pain??) too...

    I found this:
    That's an old article,,, and I never heard of that medication. I wonder for how long it would raise the VIP? Enough to lower symptoms and disease process? If it improves bone health I imagine it would keep VIP elevated significantly.

    Any thoughts?

    Thanks for this fine forum.
     
    Isaiah 58:11 and xrayspex like this.
  9. Tristen

    Tristen Senior Member

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    Pretty old thread. Hope some still have it subscribed. How did people get Aviptadil in the USA? Thanks
     
  10. kyzcreig

    kyzcreig Senior Member

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    It's disheartening to hear that Aviptadil is not effective in raising VIP. Are there any holistic means of treating it?
     
  11. xrayspex

    xrayspex Senior Member

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  12. Red20

    Red20

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  13. aaron_c

    aaron_c Senior Member

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    Shoemaker published some research in 2013 on VIP. It was a study with just 20 participants (there were no controls who received VIP, but there were a few hundred healthy controls who had blood tests done). In the following table "Base" means average participant results before ANY treatment was undertaken. AC2 are the results after 10/11 steps of Shoemaker's protocol have been completed (the 11th being VIP). The results:

    upload_2017-5-24_22-46-6.png

    All in all, it's pretty encouraging: Every test they did showed patient results moving closer to control results. In many cases, patient test results normalized entirely.

    Note that this trial was done only on patients who became ill following exposure to water-damaged buildings and had not gotten better as a result of doing everything else that Shoemaker recommends. So it's a select group, less diverse than the general community of people hoping to get better with VIP. It also makes replicating the study a pain in the behind, because every participant has to be willing to go through 10 somewhat unsuccessful and sometimes uncomfortable steps before they get to do VIP.
     
  14. Valentijn

    Valentijn Senior Member

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    @aaron_c - Did he actually manage to publish it anywhere, or did he just email it to himself and stick it on his website like his other "research"?
     
    pibee likes this.
  15. aaron_c

    aaron_c Senior Member

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    The journal "Health"? I can't tell how legit it is.
     
  16. aaron_c

    aaron_c Senior Member

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    A week ago I took VIP for the first time. I took a "normal dose" (50 mg four times a day) but only for 1.25 days before stopping it on suspicion that my TGF-beta was increasing, which according to Shoemaker is a sign that I either have current mold exposure, have Lymes Disease, or have a TH-17 / Treg imbalance (I think it's current mold exposure).


    Side Effects and Benefits

    These days my brain functions decently for about 1.5 hours a day. About one day after I started taking VIP I noticed my ability to concentrate improving. This lasted for three days before dissipating. For each of those three days I was able to concentrate for 3-4 hours. I also went out to dinner with old friends one night. Usually I would be hard-pressed to engage in any kind of extended conversation, but that night I found myself telling jokes and laughing in a way I do not often do.

    One of the things that tipped me off to potentially higher TGF-beta was bloody stool and a particular kind of poor sleep/insomnia. This started maybe a day after taking VIP and also continued for about three days. In this time I didn't change any other part of my treatment regimen, and I think having two changes appear and disappear concurrently suggests they might have the same cause.

    The insomnia I experienced was a particular kind that I get when I don't eat raw beef or get enough zinc. As far as I can tell it's actually a problem with getting taurine to say inside of cells, and zinc helps with this.

    Bloody stool tends to happen to me after repeated diarrhea, but in this case that didn't happen. It comes from bleeding, usually internal hemorrhoids.


    TGF-beta

    I think TGF-beta may be to blame for both of these effects, although I can only explain it halfway--TGF-beta blocks the vitamin-d receptor. Vitamin D increases metallothionein, which is necessary both as an antioxidant in the gut and for the absorption and use of zinc and copper. In the past I have used vitamin D to eliminate IBS-type symptoms, and I have thought it was due to an increase in metallothionein. In any case, decreased metallothionein would reduce the availability of zinc, and it seems to me that this is how TGF-beta would have caused that particular brand of insomnia.

    A third thing that suggested high TGF-beta was that I had a spell of being "extra" tired each of the three days, although less so on the last one. The first day I know that it occurred after perhaps as much as an hour of sun exposure. The second time occurred following the use of boron. The first event may have occurred after boron as well, but I can't remember for sure. Boron increases the amount of active vitamin D in our blood. I've written elsewhere why I think that the marked fatigue some of us experience when we take vitamin D pills or even just expose ourselves to the sun is probably a result of high TGF-beta. This supports that theory. Here is what I wrote about it elsewhere:

     
    Last edited: Aug 2, 2017
  17. Stacey1121

    Stacey1121

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    Not sure if anyone can help me understand this but about 3 weeks ago I started the VIP nose spray and it helped with energy and brain fog SO much and still does. However, I developed bumps all over my lips and a few on my face and chest after about 1 week and I had not connected the dots (so to speak) until yesterday. The spray is giving me a bad rash (omg I am SO bummed). At first I thought it was cold sores but anti viral's did nothing, then I thought infection or even fungus but MRSA ointment did nothing, and nystatin ointment seemed to soothe it a little (but not take it away)- that was of course until I used the spray again. When I stop the spray everything seems to start going away - (along with my energy and clarity).

    I am going to call my doc Monday but all I can say is that its been such a long journey and I thought this was one of the major pieces and now this. Anyone having any ideas I would love to hear, could not find any other info about this online.

    Thanks
     
    aaron_c likes this.
  18. maryb

    maryb iherb code TAK122

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    Could you try taking an antihistamine with the spray?
     
  19. grapes

    grapes Senior Member

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    Glad to find this thread. I have very low VIP due to a biotoxin exposure. I was following the Shoemaker protocol--thought it was mold. Then felt ready to start VIP---and oh boy, it made me SOOO tired. I would stop awhile, then restart..and once again, massive bodily fatigue.

    Then saw that it made my TGF go high too. I stopped for good and still have the deep fatigue. So...based on what Shoemaker states, I probably still have exposure. For one, I don't think I fully got rid of the staph in my nose. Working on it again. Second, I think the continued exposure are chemicals in our own house from a business we are in!! Not mold. So working to eliminate exposure to the chemicals.

    It's very frustrating since it holds so much promise. I just wish I knew what the deep fatigue is about. The rising TGF/rising inflammation is one thing, but the deep fatigue??
     
  20. aaron_c

    aaron_c Senior Member

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    @grapes that's worrying to me that your fatigue has persisted. How long has it been since you stopped VIP?

    VIP also made me quite tired, but that appears to have been related to an interaction between TGF-beta and vitamin d. I tested this by taking a boswellia extract that prevents one of the downstream effects of this interaction, and I felt better. I go into more detail about this interaction here.

    I went back and did a month of cholestyramine, but that didn't seem to help. I'm currently giving losartan a try, in the hopes that it will prevent the conversion of some T-reg cells into Effector T-cells.
     

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