CFS: Forebearance's thread 37

Discussion in 'Fibromyalgia Main Forum' started by Forebearance, Dec 4, 2009.

  1. Forebearance

    Forebearance Member

    Hi everyone,

    Well, I finally received my VIP nasal spray yesterday. At last!!!
    It cost $250 plus $40 overnight shipping, and it expires in a month, so it is pricey.

    I tried it immediately and it felt goooood. Very nice.
    Of course, there's no way to tell if the effect will last. Sometimes things are great at first and then the effect fades.

    As far as I can tell, it seems to relax the core area of my body. Like around the liver and gallbladder and etc. It feels like I had had a knot in my abdomen and the knot is untied. I don't know what to expect over the long run.

    Already I may be overdosing on it, because I've been light-headed today. I'll work on figuring out the correct dose for my body. I don't know what the overdose symptoms are for VIP, but I'll probably find out by experience.

  2. Lono83

    Lono83 New Member


    I'd be interested to hear how this works for you. I was under the impression that only Dr. Ritchie Shoemaker in Maryland and Dr. Gordon in California were able to prescribe this. Were you able to get it through an alternative route? And will any of it get covered by insurance, or will you have to pay for it out of pocket?

    Also, have you had your MSH (melanocyte-stimulating hormone) and VIP (Vasoactive intestinal peptide) tested? If so, how bad/low were the results (it's my understanding that persistently ill "mold illness" folks have very low levels of each)?
  3. Forebearance

    Forebearance Member

    Hi Lono83,

    I'm sorry I've been computerless for a couple weeks, so couldn't reply to you.

    The VIP is working for me. At least, I think it is. It makes me feel better, get thinner, and it makes my hair look like something out of a shampoo commercial. But on the other hand, it increases my sensitivity and reactivity to mold toxins. My skin prickles and burns at the slightest amount of mold toxin. And if I'm around mold toxins my kidneys hurt, my pulse races, I get insomnia. It's been harrowing.

    I need to research what exactly VIP does. My guess from my experience is that it might increase microcirculation.

    I have been seeing Dr. Gordon by phone, and he told me that my regular doctor could actually prescribe the VIP for me. So after he ordered the VIP blood test, and it came back low, he gave my doctor instructions on how to prescribe it. Yay! It saved me a trip to CA, and I am very grateful for that. Luckily I have a great local doctor to work with.

    I just paid for it out of pocket. My insurance has a $10,000 deductible, so I pay for everything anyway, eventually.

    I've had my MSH tested and it was low. I can't remember the number now, but it's in one of my previous threads. Both my MSH and my VIP were low, but not exceedingly low.

    There's been some thought on my part lately about the idea of us having to suffer in order to get well. Will we (CFS patients) or we (mold patients) have to go through an extremely uncomfortable detoxing/herxing process like the Lyme patients do, in order to get well?

    Do I HAVE to go through this agony? Will it be worth it?

    I've been taking very small amounts of Lauricidin, and it also seems to be a double-edged sword. It makes my thyroid very happy, which gives me a huge increase in energy, but it also makes me more susceptible to mold toxins. I can hardly stand to be alive when I take it, but I desperately want to take it because it seems to be so good for my thyroid.

  4. floyd000

    floyd000 New Member

    Hello Forebearance,

    Just curious if you've come across any more information on VIP? The last conversation I had with Dr. Shoemaker was that VIP might be the only option left. But he wouldn't prescribe it over the phone. How was your experience with Dr. Gordon?

    Dr. S speaks highly of VIP but I have yet to find anyone who has been significantly helped by it. I might consider spending the $250 but I am certainly not going to travel long distance in order for it to be prescribed

    Currently on high levels of fish oil trying to get inflammation down. My MSH and VIP levels were under 10.

  5. Forebearance

    Forebearance Member

    Hi Andrew!

    I'm so glad to hear from you! I've been wondering how you were doing.

    I haven't done any more research into VIP, I'm sorry to say.
    But one thing became clear in hindsight, since I wrote the posts on this thread.
    I was staying in an apartment that had regular stachy in it when I was trying the VIP.
    So no wonder it caused me to have such a strong hypersensitivity to mold toxins reaction.

    I get the feeling that if I could take the VIP in a totally mold-free place, it would be helpful.
    But like all hormones, too much is just as bad as too little.
    I had to take a very small amount to avoid symptoms that seemed like estrogen depletion.

    My experience with Dr. Gordon was great. He's a dear guy, and seems to really want to help. He mailed me a lab order to get my VIP tested. He can't prescribe VIP over the phone, of course. But my regular doctor, who is really good, was willing to prescribe it for me on Dr. Gordon's recommendation.

    Like a lot of good doctors, it can take a while to get an appointment with Dr. G.
    I would be reluctant to go to his office, since that part of California may have supermold in the air. I'm happy with phone appointments.

    I talked to the pharmacy that makes the VIP nasal spray and they agreed to make me a quarter of the usual monthly amount. That way I wouldn't waste as much of it. It has an expiration date of one month, and must be refrigerated. A quarter batch of it also cost a bit less. I think it was $150.

    But that strategy wouldn't work if you are someone who needs the standard dose or a higher dose of hormones.

    Take care!
    [This Message was Edited on 02/21/2010]
  6. cherylsue

    cherylsue Member

    I seldom come to this board, but recognized your name. How are you feeling these days? Have you made any improvement? I'm wishing you the best of health.

    I've been treated for Lyme and coinfections (including viruses, etc.) I'm working full time and functioning about 90%. I never thought I'd recover to this point, but I've had a few good doctors to help me.

    Wishing you the best,
  7. Forebearance

    Forebearance Member

    Hi there! It's so nice to hear from you.

    Wow! I am THRILLED to hear that you are functioning at about 90%! That is so great!!!

    I've made some improvements energy-wise, but along with that have come increased sensitivity and reactivity to mold toxins and chemicals. So it's been a challenge to cope with everything. I'm basically hanging in until someone figures out an XMRV treatment.

    Wishing you the best, too,