Thursday, February 20, 2014

Vasoactive Intestinal Peptide (VIP) Treatment for ME

This is a post about a medication that very few people have tried. I thought I would share my experience so far. As always, if you have questions or anything to say regarding VIP I would love to hear your thoughts in the comments.

What is VIP?
Vasoactive intestinal peptide (VIP) is something that is produced by the body that has a broad range of actions that could potentially benefit ME patients. It does all kinds of things, effecting the GI, cardiovascular, CNS, endocrine, and immune systems at least. I am not going to go into great detail regarding its actions at this point because its so complicated. Let me go ahead and say that no one would expect this to be a cure - its purpose would be to provide symptomatic relief.

VIP was recently touted as a successful treatment for CIRS-WDB patients in a paper by Dr. Shoemaker, a mold expert, in a small group of 20 patients.  There are some problems with his paper in my opinion. For example, the fact that he tells us there were three things associated with a lack of response (see first paragraph of the discussion) but if any patient had one or more of those things they were automatically excluded.  That begs the question, did he just exclude everyone (we don't know how many, could be hundreds?) who didn't respond and the 20 who "all benefited" were just the patients left over?  Also, other than VIP there are a lot of treatments that occurred over the course of the study so there are a lot of other variables - how do we know one or more of those treatments was not more beneficial than VIP?

The bottom line is we don't know... I can't conclude based on this paper much other than that something they did (of the many treatments) seemed to have benefited 20 people over 18 months... and maybe it was VIP.

But first, you are probably asking yourself, why is this guy talking about this random CIRS-WDB stuff on a ME blog? Good question.  I am talking about it because there is a huge overlap between ME patients and CIRS-WDB patients and there are some doctors who think they are pretty much the same thing.

My Experience with VIP
I decided to give VIP a try as it seemed like the benefits could be substantial with little risk. VIP has been sold as an FDA approved orphan drug for pulmonary artery hypertension for nearly 10 years with a good safety record, and the fact that it is something that it is an exogenous version of something that we should be producing endogenously kept me from being too concerned about severe adverse effects.

Prior to starting VIP I also had lots of lab testing done. Notable findings included undetectable VIP level (that is not normal), and some other standard labs abnormalities that are consistent with ME. An interesting (totally anecdotal) tidbit - everyone I know, or have heard of, who has ME and has had their VIP tested, had low levels.

Benefits
  1. When I began taking VIP via the nasal spray some months ago, the first thing I noticed was that I slept much better. I may have mentioned this before, but ever since I got ME, it has been a huge battle to get sleep and when I did "sleep" it was very fragmented and shallow... I literally never feel sleepy any more even though I am completely drained/exhausted at the same time. Before taking VIP I was on 5 different medications at night just to sleep at all, and as I mentioned it was very poor quality sleep. I take VIP right before trying to go to sleep, about 1 hour after I take the rest of my bed-time medications. When I first started VIP I would take the nasal spray and within minutes feel like I was being really "drugged up." After thinking about it and experimenting with the timing, I believe that this was due to VIP induced increased blood flow in the brain of the already circulating sleeping medications. Because of this, I was able to eventually stop taking two drugs completely, and was able to decrease the dosages for everything else by about 1/2. A couple of the reasons I believe this was predominately due to increased blood-flow in the brain is that when I take VIP in the morning I do not feel drugged in the least, when I took VIP earlier in the evening I did not feel drugged, and as I decreased the amount of medications I was taking for sleep the sudden "drugged" feeling decreased significantly. 
  2. Another benefit that is much more subtle, and I am not entirely sure is a direct result of the VIP or the fact that I am able to sleep with fewer drugs and lower dosages of the medications I do take, is mildly decreased brain-fog, word-finding difficulty, and slightly better overall mental acuity. My brain is still nowhere near what it used to be before I got sick, but it seems a tiny bit better.
  3. One last thing that may be a benefit, but I am not sure, is better digestion - lessened intestinal issues associated with food. The reason I am not sure about this one, is that I have done a few other things at the same time that I believe have helped with this.

Disadvantages
Now on to the downsides of taking VIP. I have had no adverse effects from taking VIP. But, I also am not functionally any better than I was before I started taking it... I can't DO any more than I used to, and that is, of course, what I want the most, to see functional improvement. Considering that, the downsides are almost entirely cost-related.  With my limited budget, it costs a lot: $200-300/month. So, are the mild benefits mentioned above worth the cost? Probably not. However, for now, I am going to continue taking it. If I do not see additional improvements in the next few months, I probably will not be able to afford taking it long-term.



7 comments:

  1. Thank you very much sharing your experiences MDwithME. I am sorry you are poorly and can't write too much. so just a quick question:
    Are you still taking the VIP? Are you still on the reduced sleeping medications?
    You might have heard that Dr Cheney now experiments with very small doses ( a drop or two under the tongue) and that his patients get the same benefit. This would help financially.
    I also have total insomnia for 15 years (ME for 25 years) and am on the lookout for things that would help reducing sleeping medication.

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    1. Thank you. Yes, I am still taking VIP and yes it helps with sleep significantly. Also reduced doses seem to work nearly as well as full doses, like you mentioned.

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    2. Thank you for replying. My consultant here in the UK will probably not know where to get the VIP. Do you by any chance know a source/ brand in the UK? No need to search, just answer if you know it.

      Yesterday I read your summary of Dr Cheney's talk. Wonderfully clear and refreshingly short. It must have cost you a lot of brainpower to compose it. I will take it with me when I see my consultant.

      I very much wish you to get some improvement in time.

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    3. No, I don't know about a UK source, sorry.

      Thanks, it did take a lot of brainpower :) I am glad it helped.

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  2. I'm curious. Could there be a parallel health issue to ME that causes elevated VIP? I ask because mine has been elevated for a few years(at 2-3x) the upper limit, but CT and Octretide scans are negative. So I'm left wondering why it is elevated, even though I have many of the symptoms of most of you with ME. By the way, I do NOT have diarrhea, which would be the main symptom of elevated VIP. Any thoughts?

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    1. First of all VIPomas are extremely rare... ME, not so much, unfortunately. The symptoms typically associated with elevated VIP (VIPomas at least) are very different from ME. If you have ME like symptoms, I can't imagine why a typical doctor would order VIP looking for a VIPoma?

      There are very few similarities, the ones that due exist, such as low blood pressure are for completely different reasons which should be fairly obvious.

      Could you have ME or something similar? Although people who do not know what they are talking about like to say that there are lots of "similar fatiguing illnesses", there really aren't any known diseases that are similar to ME at all when you actually look at the symptoms and pathophysiology. MS is probably the closest. For example, is there another disease with flu like symptoms that follow exertion/exercise every single time? Nope. Increased sympathetic tone with elevated heart rate, decreased peripheral perfusion and oxygen consumption, massively increased EF, yet extremely low CO? Nope, not unless you are currently bleeding out from massive hemorrhaging, and let's give my fellow doctors some credit... they might pick up on that one :) There are many more examples... I know that is not answering your question, sorry for the tangent...

      I really don't know, could you could have ME...? I certainly hope not. Since everyone that I know of who has been tested, was at least 1 year into the illness, the majority >5 years, could it be elevated in the beginning as an attempt to compensate? Perhaps, but you are talking about an elevation lasting years.. The typically undetectable levels of VIP in ME are not from a primary VIP deficiency, but more likely from the global neuroendocrine disregulation and the overall down-regulation of anything that is energetically "expensive." That being said, we also don't have enough data yet on VIP in ME... maybe some people who do have the energy required, attempt to compensate for decreased cerebral blood flow, etc. by naturally elevating their VIP levels?

      Could consistently elevated VIP make you feel poorly? I imagine it would. Could it be from something other than a tumor? I imagine so, but not really sure what it would be. I hope you are able to find out what is going on and feel better soon.

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