Tuesday, August 5, 2014

Dr. Lucinda Bateman's Theory of Myalgic Encephalomyelitis

If you have not already seen Dr. Bateman's video regarding her thoughts on the IACFSME conference and her unified theory this video is worth watching.

Whoever created the video really messed up the slides... they are only on the correct slides for about the first half, so just listening is best for the 2nd half.

She is absolutely correct that pretty much all doctors are seeing at most a few puzzle pieces of this disease and do not have the big picture. This is mostly due to the fact that ME is far more complex than any disease we have ever studied before, but also because medicine is a highly sub-specialized field (medical research is even worse).

I hope that she and others will pursue validating this theory. Personally, I think it is a very good theory and hope more research is done on CNS autoimmunity and inflammation, but my own "unified theory" is a bit different. Perhaps more on that later...

Thursday, February 20, 2014

What Would You Like To Read About On My Blog?

Until the last post on VIP, I have not posted anything here for a long time. I apologize for that, but my health has been so poor it is very difficult to work on blog posts, even for short periods of time.

That being said, I would like to post more material here, but will probably need to keep the posts pretty short. Most of my ideas are things that are pretty involved or complicated and would therefore take a lot of time for me to do.

If any of you have suggestions of things that you would be interested in reading about from my perspective as a doctor with disabling ME, please let me know in the comments sections below. Thank you!

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.