Wednesday, May 15, 2013

Vasoactive intestinal peptide (VIP): my experience

I started VIP a week ago on the recommendation of a doctor who studied the Shoemaker protocol.  He thought I'd be a good candidate for it as it has helped many with CIRS, including those with CFS, to downregulate their hypersensitivity. In order to start it, you need to be living in a mold-free environment, or one low enough in mold that you're not reacting.  You also have to pass the VCS to show that your nervous system has recovered to some extent from the damage of cytokines and mycotoxins. MARcOns have to be gone.  I met all three requirements.

The normal, recommended starting dose is 4 sprays daily in alternate nostrils for three to six months, then a maintenance dose of two sprays a day. I did two sprays the first day since it arrived late, increased to three the second day, four the third day. I felt quite relaxed and mellow. I slept a lot more. But I noticed that it felt like I ate too much when I had a normal meal.

By the fifth day, I was having major fatigue issues, too tired to do anything until late afternoon.  I figured that with the added relaxation effect of the VIP, I was noticing the exhausted state of my adrenals.  I decided to try an adrenal glandular my old doctor had given me which, in the past, made me too hyper to sleep.  Unwilling to take a big risk, I bit off a 3rd of the tablet and noticed: NOTHING.

After three days of feeling too exhausted to sit up, having almost no appetite, feeling that I could not digest my food, experiencing air hunger, sleeping 9 hours and needing to nap during the day, I decided to stop the VIP.  My 'trial' lasted 6 and 1/2 days.

I did some research on the effects of this neuropeptide.  It has many effects on the body as do all neurotransmitters, which function somewhat like hormones (in that many tissues, organs, and body systems are affected)  Here are some of the things it does:


  • regulates neural excitability (hence, I felt like I'd taken a quadruple dose of Xanax)
  • involved in learning and memory, especially in brain regions of amygdala, hippocampus, cortex, and hypothalamus  (for a list of specific effects, http://www.biomedcentral.com/1471-2202/9/63)
  • essential for function of circadian rhythms
  • inhibits oxidative stress in the lungs (http://www.ncbi.nlm.nih.gov/pubmed/2474178)
  • anti-inflammatory
  • vasodilation and bronchodilation  (http://www.ncbi.nlm.nih.gov/pubmed/15162259)
  • increases cardiac contractibility and dilates blood vessels
  • immunomodulation
  • induces smooth muscle relaxation in the digestive system especially esophagus, stomach and gallbladder (suggests it should be helpful with GERD)
  • reduces gastric acid secretion stimulated by gastrin
  • in the intestine, supports secretion of water and electrolytes to produce pancreatic juice and bile, and pancreatic bicarbonate, leading to increased motility
There's probably more, but this list is enough to see how much it could potentially benefit ol' me with miserable memory, inflammation, high oxidative, poor circulation (in the presence of mold), slow intestinal transit time and a tendency to constipation, as well as the typical cardiac issues in ME-CFS which show up as weak pulse and sometimes, on EEGs. a flattened Q wave.  

So why am I having so much trouble?  My theory, untested as of yet, is that after being sick for 25 years, I've obtained a sort of homeostasis and by adding in just one of the things that are low, I've upset the balance.  I probably need something to counterbalance the mellow effects of VIP with some vasoconstriction.  But what?

I keep thinking of vasopressin.  It's also known as ADH or antidiuretic hormone.  When low, you have to urinate a lot and in large quantities.  This started happening to me as soon as I moved to Gambier, Ohio, where I used to sit at my desk with a gallon jug of water and go through the whole thing by the end of the day.  I only experience these symptoms now when I get exposed to mold or when I have some other kind of stress that makes me hyper and wired.  I'm not yet convinced that these are always from an invisible exposure.

Vasopressin helps the body retain water, constricts blood vessels, and increases blood pressure.  It's available by prescription in a synthetic form as desmopressin acetate.  I'm hoping to get it, or ideally a compounded natural vasopressin, and see if helps balance some of the unwelcome effects of VIP. As a synthetic form of vasopressin, it doesn't have much effect of raising blood pressure by means of vasoconstriction, because the molecule has been changed in several ways.  So far I haven't found a source that compounds a natural form without preservatives for us sensitive patients.

Shoemaker's 14 step protocol recommends correcting ADH fairly early on as Step 8, while replacing VIP is Step 13.  http://www.survivingmold.com/treatment/step-by-step    As I look over this list, I see that I've done everything through Step 7, so perhaps in our enthusiasm to make it possible for me to live a less isolated life (e.g. going into buildings in a city without getting sick), we missed an important step.











23 comments:

  1. Janis,

    I think you're overreacting, pardon the pun.

    I believe you were right when you said you felt "noticing the exhausted state of my adrenals". IMO, that's precisely why you felt so tired, so relaxed at first, and needed so much sleep. Perhaps by increasing the dose, you took too much, which resulted in the other symptoms, but I think if you just went back to one or two doses a day, that would give your body and adrenals to heal, because it would allow you to rest, instead of constantly being on the run.

    I think too, that if you reread your review of Dan's CFS book from your January post, you'd find out probably the real reason you're having a difficult time healing. You'll find it in re-reading your own story in that review.

    ReplyDelete
  2. when should I start shoemaker's protocol if I am starting mould avoidance July 1st? I'll see if I can find a doctor out where I am in BC (Canada).

    ReplyDelete
  3. Thanks for sharing your experience with this. I was anxious to start Dr. Cheney's nasal VIP protocol but decided to wait and see how others do. I'm afraid taking it might disrupt what is actually a compensatory measure in my body. Though I still have hope it might be helpful. We'll see.

    ReplyDelete
  4. Hi,

    I wanted to recommend a very resourceful doctor who specializes in fibromyalgia and CFS--Jacob Teitelbaum, MD--and he knows these conditions as an insider. He contracted CFS while attending medical school and had to drop out for a year to recover. In the ensuing 30 years, he's dedicated his career to finding effective treatment. He's written several books on the topic, including his latest, "The Fatigue and Fibromyalgia Solution" (Avery Penguin, August 6). For more info, check out his website, www.vitality101.com and to preorder, http://www.vitality101.com/the-fibromyalgia-and-fatigue-solution.


    Best,

    Lauren

    ReplyDelete
  5. Are you kidding Lauren? Anyone who's had CFS for more than a couple years -- and Janis has been sick for 27 -- knows Teitelbaum, and all his books and potions. What we don't know is how many patients have recovered under his care, especially since his tie-in with the now-defunct Fibro and Fatigue Centers disaster.

    Don't get me wrong, he's a nice man, and makes some good points, but he doesn't have "the solution" as he claims.

    ReplyDelete
  6. I am so sorry to read about your reaction to that injection. I am also sorry that you seem not to be able to realize that you simply had some type of adverse rection to it, and appear to actually blame yourself.
     
    For your sake, I wish you and others who go to who they think are big name drs, would get the book written by Prof. Steven Rochlitz that was mentioned here 2 years ago. It helped me immensely both with my health and to see the whole picture. His book makes clear that there is nothing special about “mold neurotoxins.” It is just another toxin that induces porphyria in some people. Mercury, mold, pesticide, drugs and other things do this in up to 20% of the population. Please see www.wellatlast.com for that book. And please go to the testimonials page there for what readers said after reading it.
     
    Prof. Rochlitz told me about someone who was told to make sure his home was mold-free. He built a brand new home. Totally mold-free. But he got sicker than ever. Formaldehyde and such from the new home. Mold is just another toxin that will induce poprhyria—and formaldehyde induced porphyria even worse.
     
    Nothing special about mold—it’s the porphyria that is the key. Read the pages at wellatlast.com I mentioned. Get the book by Prof.Rochlitz to see the whole picture. There ae no magical drs, no magic pills, no magical injections.
    Save yourself great expense and much suffereing  to find out  all that is really going on. You’ll be glad you did as I am.

    ReplyDelete
  7. Hi Andrea,
    Not sure we're reading the same essay when you write: "seem not to be able to realize that you simply had some type of adverse rection to it, and appear to actually blame yourself." I'm gld porphyria turned out to be your holy grail. It's been helpful for a few friends of mine, the saving grace of none. It's been known in the CAM circles for awhile. Hence, I was tested in the late 1990's negative.
    I agree that other toxins such as formaldehyde are awful. For whatever reason, that one seems easier to avoid than mycotoxins. smoke and auto exhaust are the hardest in my camping lifestyle but don't cause a strong reaction, just a bit of congestion or annoyance.

    BTW, for some people, one particular toxin creates more extreme reactions than others. This well-acknowledged observation is why docs who use P&N bother to test and treat.

    Enjoy your own great health.

    ReplyDelete
    Replies
    1. Thank you so much Janis for writing this blog. Also, I would like to thank Andrea for posting the link to Prof. Rochlitz’s book “Porphyria”. Although Andrea sounded somehow condescending in her post I believe that she just wanted to help. IMHO the book does not discount at all the importance of reactions to mold, quite the contrary, what it does is also to show other predisposing factors that make those reactions so devastating. The book does not talk only about Porphyria and does not assume that everyone has it. The author covers several health issues like Mast Cell disease, Gilbert’s and so much more. What I found in this book that I haven’t found in others is an extensive well-rounded research about chronic illness that’s easy to read for the layperson, a self-help/do it yourself style with practical examples and more importantly, a piece of the puzzle that has been missing. It is for sure the most informative book I have come across so far and I think it is going to help shine the light on complex conditions like CFS/ME.

      Delete
    2. I'd llove to hear more about the "piece of the puzzle that has been missing" if you are willing to share those details. Mast cell issues are coming up more and more as important in auto-immune disease and EI. I never heard of Gilbert's disease... Please write and share some details for our readers..

      Delete
  8. Hi Janis,

    are you still taking VIP? I've been on it for a few months after working through the rest of Dr. Shoemaker's protocols for mold exposure. So far, I don't notice a difference and have increased the dose a couple of times. I am now at 12 sprays per day. Do you notice anything yet? Is your fatigue better? Hope so.

    Thanks,
    Mike

    ReplyDelete
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Please add your comments here. If you have a question specific to your own condition, please e-mail me directly at drjanisbell@gmail.com I cannot give medical advice. If you want to suggest a product or therapy you think I should try, please let me know if you have used it, what you used it for, and how it helped you.