9/17/13
My negative test result is positive?  I get an email from John Hopkins that I have new test results.  Log in to the Hopkin's great system where I can see my test results, send and receive messages, see appointments etc. In encounters in previous years with hospitals including Hopkins I have always had to yell at them to get my results in a timely way .. the usual bureaucratic confusion and wanting to have the doc look at them first. This time I got my blood test results the very next day (except for PSA)  so this is a major improvement in the health system.  I log in and see that this new test result
for tuberculosis is negative.  I think this is good but wanna be sure so search the Internet and verify the meaning here is positive. don't have TB.  Well I'm not surprised .. other than this mysterious rare disease I'm in great health for a 76 year old man, free of the use of any drugs or supplements (until this recent event). Eat well. Exercise -- play single's tennis with younger men and women and sometimes even win (well not with the woman).  Am happier than I've ever been with great family and friends.  So what is this mysterious "rare disease".  Where did it come from? What caused it? How serious is it?  And the Cure? And how do I feel about all this?
What I have (or may have) is "Pityriasis Rubra Pilaris"  (PRP).   I say "may have" as the first biopsys result said it was "Grover's disease". While the second said (PRP) So maybe it's that.  Whatever it is, it first showed up 2 months ago as a small 2 square inch rash on my chest which I thought nothing of.  Over the succeeding 8 weeks it has spread to all over my chest then to my back, arms and legs.  It is unattractive, itchy and quite frankly alarming. However,  there is no indication that it is fatal other than as a possible indicator of something worse which I will learn as this journey progresses.  Something worse?  Well if I am healthy and feel great so what is this doing and where did it come from?  The cause of this disease appears to be unknown (oh great!).  I had an urinary track infection, a few weeks  before this (another surprise .. never had that before .. maybe from walking in the hot weather and not drinking enough water) .. so maybe it's related to that infection or the antibiotics I took for it.  What is the treatment and prognosis?  Well Grover's lasts 6 mos to a year or longer,  PRP can last for 3 years. Both can come and go outside of these time frames.  What's the treatment, and prognosis? First the conventional which I've so far been focused on:  Steroid creams applied to the skin and prescription  drug Corticosteroids ingested.  As this continues I plan to pursue alternative medicine approaches including acupuncture and  I'm currently running an experiment with Coconut oil (see last post).  And trying meditation.  I expect to see improvement soon and maybe seeing it right now as we speak.  But then I have been detecting improvement before which was premature so no fear of having to quit the fun of this blog too soon!  And why me? Well I joke that God sent this to me to make me more humble about my good health which may be as much luck as healthy living for which I may have taken too much credit. How do I feel about all this? Surprisingly not all bad.  Maybe this is denial but I find this quite fascinating and really a travel adventure possibly of benefit to others, more so than my world travels and blogs so that's all a plus.  Of course all of this may get old but for now I'm pumped and I don't think it's just the Prednisone (Corticosteroid drug I'm taking) which can have mood swing side effects as I haven't taken any since yesterday - whoops reminds me gotta take now - and have been feeling pretty positive before getting on the drug (hence the name of this blog).   So that's it for now.  Oh one more thing:  I woke up with the itches again the morning.  I'm working on dealing with this and two things I'm finding may help:  deep breathing (an idea from yesterday's reading of  Donna Jackson Nakazawa's great book)  and putting the mind elsewhere like writing this blog.  I think the mind can't handle more than one thing at a time (well mine anyway) and if we can focus on the positive there's no room for the negative.    I'm thinking a lot about Alternative (natural) treatments vs Conventional (Big Pharma). You may find my thoughts and real life experience on this of value,  but I'll save that for tomorrow. Hope you find this blog interesting. I consider myself very fortunate to be in a position (time, resources, access to the best rated medical system in the world and access and experience with great Alternative medicine practitioners both here in the US and Canada) to learn a lot about how to deal with a serious medical matter. Being able to pass what I learn on to others makes this challenge a more than acceptable mission.  Please feel free to comment or ask any question below. Thanks for reading!
PS --For more info on PRP and pictures(yuck!) see this and this.