Update

Lviv, Ukraine, 5/16/2017

It's been a long time since my last post so I thought I should do a brief update to assure that what I wrote in my last post is still valid.

I continue living a normal life without the effects of PRP. currently traveling as described on my Blog,  UkraineTravelAdventure.blogspot.com.

And for those suffering from this terrible disease, I suggest reading my last post on this Blog which summarizes what worked for me.

Hope others benefit from my experience!

What Worked for Me

July 15, 2014
My rare disease, PRP, started about a year ago with a rash that progressively covered most of my body, caused the skin of my hands and feet to crack causing the fear that I would not be able to walk, It was accompanied with terrible itching and extremely low energy. The most likely prognosis was 3 years of debilitating disease with no certainty of outcome.

Yet after just 7 months of a natural treatment plan (after first using some prescription drugs that did not work) I was 80 per cent better.  And now, I'm 90% cured. My hands and feet are totally fine and I am back living a normal life including a 3 week travel adventure to Ukraine.

With the onset of this disease  I took on a mission to find a cure (there being none recognized then or now) and share the results, hence this Blog. What follows is a brief summary of what worked for me. Please click on the links (in green) to learn the details.

1. Juicing fast.  No solid food for 35 days.    I decided to test my Naturopath's theory that skin problems are largely a compromised gut. Juicing cleans out the gut and loads you with vitamins.  Not much fun and a bit of work but worth it for the results.  This is what I call my Killer App (or the Silver Bullet).  During this time I experienced Dramatic improvement.
2. Coconut Oil for the dry skin and flaking and itching that comes with the disease.  Better than topical steroids and natural. Feels great. Probably good for everyone not just PRPers.   Nice to find that a natural healthy substance works better than big Pharma's which I proved with an independently verified live test.
3. Vaseline oil (and Shea Butter) for hands and feet to prevent craking and immobilization.  On hands inside plastic gloves and on feet in plastic grocery produce bags . Not great fun but it worked to keep me mobile when PRP was most intense.
4. Probiotics.  Probiotics are good bacteria.  Good bacteria are necessary for a well functioning gut and digestive system.  One of the downsides to antibiotics can be reduced population of good bacteria in the gut.
5. Diet.  After juicing I went on a Vegan diet until recently, Now with PRP no longer a problem I'm back to just healthy eating.  Whole foods. Mostly vegetarian. Fish and very limited red meat.
6. Exercise. Essential to health.  Hard to do when you have little or no energy which occurs with PRP.  However, I did try to get out and walk every day.
7. Positive mental attitude. Studies show being happy has a huge effect on our health.  Having PRP is not a happy occurrence.  I made it into one by starting a Blog to record my experience as an adventure.  I also made an extra effort to take time and focus away from PRP on things I enjoy.
8. Take responsibility.  Make your own decisions!  I got great advice and support from some medical professionals and terrible advice and direction from medical professionals with the top rated hospital institution in the country.  Take responsibility, trust yourself and second guess everyone, no matter their credentials.
.
If you are interested in more details please read the rest of  this Blog. Particularly the links in  this post (underlined and in green ).  Or scroll down and start from the beginning.  I hope you enjoy reading as much as I enjoyed writing this adventure story!  And please feel free to comment or email.
Thanks for reading!

Last Acupuncture Treatment

5/7/2014
Just for the record I am posting to note I had 2 more Acupuncture Treatments since the previous post.  with nothing new to report.  I think this will be my last treatment as I neither feel the need for any more or feel able to detect any specific benefit.  

Second Acupuncture Treatment

April 4, 2014

Just got back from my second acupuncture appointment.  Here's a picture of the waiting room.  Bright, cheery, not the typical cold conventional Doc's

My First Acupuncture Treatment

At the Acupuncture Doc's office. I fill out a very brief 1 page summary, a refreshing change from the  the overly and unnecessary and misleading (IMHO) detailed forms required by Conventional Docs. I

Does Acupuncture Work?

March 29, 2014

Yesterday, for the first time in my life, I went to see an Acupuncturist.   My reading tells me that Acupuncture works.  This may be simply the placebo effect.  I've read that people who think they are

Life is Good

2/12/14 8:30  AM
No I haven't perished in the night.  That's not why you haven't heard from me (geez my last post was way back on 11/24/13).  The good news is that I am about 75% better than when the disease (PRP) was at its worst.  So much better that I am focused on other things and have kind of lost interest in PRP.   However, there's still that 25% to go to a complete cure. Believe me I don't want to tempt the Gods by sounding too confident or being too neglectful.  And reading the PRP mailing list of fellow "adventurers"  makes me want to share my tentative conclusions with you and them. So here goes.

None of the prescription drugs worked for me.  The Derm Docs don't know anything about this disease.  Like other Docs they are given way too much credit for their knowledge.  Perhaps we have a need to do this (give too much credit to the Docs) and it actually works if it gives us hope since one's mental attitude is very important, perhaps the most important thing in heeling.

Is Happiness a Choice?

Sunday 11/24/2013 7PM

Get Out!   That's what I decided to do and I think it worked.  In my last post I talked about the Mind/Body connection and how important it was to be happy in order to heal. Scientific evidence demonstrates that happy people are healthier and heal better than unhappy people. This rare disease PRP was starting to get to me. (Hey look. I just used the past tense, so I must be making progress with my attitude). 

Night Plane to Nova Scotia

Wednesday Nov 20, 2013 9:30 PM

Yesterday, it was just after midnight, dark and rainy with the streets almost deserted as my daughter and I drove from the airport in Halifax, Nova Scotia to the B&B downtown where we were to spend the night, before my appointment with my Naturopath Doc. Fortunately, the appointment was much later in the morning, just before noon.  Once we arrived at the B&B, being over stimulated from the flights from the US, it did take a while to get to sleep, but I did get 6 or 7 hours and so was alert and eager to go the next morning.

The first thing that struck when we arrived at the Doc's office was that it was sunny and cheerful, unlike conventional Docs' offices which, in my recent experience have all been dark and gloomy.

A Painful Detour

11/10/13  7:30 PM

A week ago after going off the juice fast and eating solid food I made a dumb mistake. Even tho I really knew better.  I didn't slowly phase from liquid to solid. Well that, or something, wreaked havoc with my digestive system. Let me just say it was both diarrhea and constipation. Kind of a combination. Certainly, unique in my experience.   I'll spare you the details.  Painful.  Debilitating.

What Next?

11/2/13 5:30AM
I'm up early while it's still dark, for the first time in over a week.  Since going off Prednisone completely, a week and a half ago, things have really changed.  And quickly.  I've gone from sleeping 7 1/2 hours a night with Prednisone to around 11 hours a night without the drug.  I had no idea what an effect the drug was having on me.  Now I know. And my positive attitude was, I'm afraid, more influenced by the drug than I realized.

Drug Free and Groggy

10/24/13 7:30 
Tuesday I got a call from Johns Hopkins telling me that I passed the Cortisol test. So it's OK to go off the drug Prednisone. It's now the third day of being drug free and the changes are, well, dramatic.  I'm not up at 3AM like before.  Today I got up at 7. Almost 9 hours and that's before the day's naps.  Yesterday I got 10 1/2 hours including naps. While on the drug I was doing fine with 6 1/2 to 7 1/2 hours.  A big change.  

Drug Free?

10/22/13 10AM
Back from my early morning trip to Johns Hopkins to get blood drawn for my Cortisol test to see if it's OK to go off Prednisone completely.  I've cut down from 6 tabs a day to 4 to 2 to 1 to 1/2 over last few weeks.  Looking forward to being "free at last".  No drugs. Just Coconut Oil, Probiotic Supplement and the other stuff: Juicing, Smoothies, Meditation, Exercise.  Good healthy stuff.

A New Doc?

10/18/13 6AM
"You wouldn't believe the crap they teach in the medical schools today".   Quoting his Primary Care Doc, a friend who recently had a successful hip replacement, suggests I see this Doc.  I think I'll do that. I'm going to need a Primary Care Doc to access the health care system.  One of my irritations with the system is how you have to go through a Doc to get a test done.  My Naturopath wants me to have my PSA test redone 30 days after starting my "Juicing Diet". That day is a week from today.  She thinks the PSA high reading may be due to my rare disease, PRP, and as it clears maybe the PSA reading with come down.

So I think I'll do this. See if I can sign up with this Doc.  Would be nice to have a Doc I can trust and I certainly can't trust my new Johns Hopkins Primary Care Doc who was touting the Methotrexate drug. Instead of telling me how dangerous it is, she was telling me how safe it supposedly is (it is anything but!).  Starts to get my blood boiling when I think about this.  Should I file a complaint

Doc Says "Never"

First time Reader?  Please Click Here.

First time Reader?  Please Click Here.

10/16/13 4AM
Yesterday I visited Derm Doc #1.  He exclaimed that I really am better.  We looked back at some of the original pictures he'd taken.  They are really scary and I had, I guess, forgotten how bad I looked. Or maybe I just suppressed it at the time.  I filled him in on events with the Johns Hopkins Derm Doc.  How she'd pushed for my going on Methotrexate in spite of improvement in my condition which she failed to recognize and her refusal to verify my improvement by calling him and looking at his pictures.  He said he would never prescribe Methotrexate to a patient who was getting better without it, given its seriously dangerous side effects, damage to the liver etc.  He wondered if they are

A Second Chance?

10/13/13 5AM
I have just about decided to take on a new task.  Straightening out Johns Hopkins.  Just kidding here. I haven't added another disease, megalomania.  But I am feeling that I am looking so much better and I have the answer and they don't and they should share in the knowledge and help promulgate it.

What Do You Think?

10/11/13 4AM
I am thinking about yesterday's visit with my, now former, Johns Hopkins Derm Doc.  I may not have made it clear, but she more or less resigned, saying I could come back at any time.  That is fine with me as at this point I see nothing to gain for either of us continuing the relationship.  What I would be interested in knowing is how you feel about what happened.  These are the questions I have.  Assuming I gave you an accurate portrayal of the conversation (I really think I did), and I realize your answer has to be based on that assumption and might otherwise change.

The Doc Is Incurious

10/9/13 4AM
Yesterday I had my appointment with my John Hopkins Derm Doc. In my last visit, I had rejected her plan to start taking the drug Methotrexate and instead told her I planned to go to a wholly "natural"plan (in large part designed by my Nova Scotia Naturopath Doc). I had not told her the details of my plan or its source (the Naturopath Doc) to avoid possible non-productive discussion, telling her, instead, the broad outlines: mind/body stuff, more exercise, better diet etc. saying we could monitor and revert to her plan if mine didn't work. She accepted my proceeding this way, but made clear she did not endorse what I was doing.

Moment of Truth

10/8/13 2:30AM

Big day today. I have an appointment with my Johns Hopkins Derm Doc. In my last visit, I told her I was going to pursue a plan other than the one she proposed. I was going to avoid going to the drug Methotrexate and scale down out of the drug Prednisone. And I was going try to cure the inflammation through diet, exercise, meditation etc. I didn't go into any detail, but emphasized the slight improvement I'd experienced and by monitoring closely we could change course to her plan if things deteriorated. She accepted my plan, although reluctantly, and made clear she did not endorse it, but said she did hope that it worked for me.

Time Off for Music

10/7/13 Monday 3:20AM
I'm groggy after  5 1/3 hours of straight sleep .. my longest stretch in over a week. A little shaky and losing weight with the juicing fast so I need to email my Naturopath Doc in Nova Scotia about tuning up the diet.  More protein and fat?  All I'm getting is what's in fruits and veges.  But, don't want to mess with success.  Body scan shows continued improvement - less redness and bumps reducing.  Discussion with Johns Hopkins Derm Doc will be very interesting. She will be surprised.

Doc Says "Dramatic Improvement !"

"Dramatic Improvement. The pictures don't Lie!"  says Derm Doc #1 whom I've had for years and retained while I've added John Hopkins Derm Doc #2.  He has taken pictures of my torso on my visits to him and the new ones taken and reviewed at my appointment Friday confirm I am curing, and rapidly. Far more rapidly than I had expected or even hoped.

Extending Life With A New Way to Sleep

9/4/13 2:30AM
I've discovered a new way to sleep which I want to share with you. Before the onset of this rare medical disease, I'd been  sleeping really well, 8-9 hrs a night. But, lately, I've developed some new patterns which are very exciting.  They give me a better result: more alertness during wake time, with less time sleeping so more time available for live action.  Right now, with my medical adventure in full swing, I'm eager to be up and doing all the things I want to do for which, as you know, there is never enough time.  Years ago, I read a book by a Cornell professor who specialized in sleep and said that 10 hours was the ideal. Most of what you read says 8 is best with more or less for different people.  The average I read in the US is 6-8 hours. They say Margaret Thatcher got 4 hours, Leonardo Da Vinci 1.5-2hrs, Thomas Jefferson 2hrs, Thomas Edison 5hrs, and Isaac Newton 3-4hrs.

How Can You Help?

How can you help?  You already are.  By reading this Blog. Knowing that you may find this interesting, informative, entertaining, any or all of these makes it all worthwhile. More importantly, the thought that together in a small or large way we may be able to help others.  Please email this link for the blog to your friends and anyone else you think could benefit!

Bright Shining Yellow Pinpoints of Light

Am I really getting better?  Did a mirror check this AM.  Looks better to me. Less redness. The bumps that come with this rare medical disease seem to be getting smaller. Definitely not worse and at this point I am happy to be just stable. It would even be OK if I experienced a slight decline since I have cut back on the Prednisone drug and am on this rigorous juicing diet - nothing but fruit and vege fluids. and time should be allowed for this to kick in . Actually I have not had any Protein in 4, now going on 5 days except for the limited amount in the veges in my juice .  I don't recommend that and

My Killer App

Time flies.  I'm on day 4 of my new treatment plan.  No you didn't miss any posts.  The last dealt with the first day. So we'll catch up with this one.  It's early morning 6:30 AM and I just
stood up from my computer here to go get a snack.  Whoops. Can't do that.  Why?  I am on a "juice fast". What's that. Well that's where you consume nothing but juice. In addition, I'm consuming vegetable broth and will be drinking herbal teas, but haven't gotten to that yet.  I call this juice a "Killer App" because it is so powerful and will, I expect (and hope), not only cure my mysterious rare disease, but help me achieve a new level of health, even beyond that I enjoyed before this disease suddenly struck without warning.  Here's how it works.  You buy a juicer.  Not a blender. Blenders

Choose the Alternative?

9/26/13
I'm on my new plan, recommended by my Nova Scotia Naturopath Doc who helped me years ago deal with the Prostate Cancer issue (See I Bet My Life on Alternative Medicine).  I am going to treat  this sudden and mysterious  rare disease very aggressively and proactively, but Naturally. Let me tell you first why and then how. As for the why.  I am an healthy: 76 year  old guy, living a very happy and fortunate life style, physically active, lots of interests, great family and friends, good diet, lots of fresh fruits and vegetables, exercise-gym and tennis, sleep 9 hours a night (until lately), don't smoke, do drink but very little.  Then this comes out of the blue.  So you say a lot of good all that healthy

Day of Decision and Surprise

9/24/13
Big day today. I have an appointment with Johns Hopkins Derm Doc.  I see (on their great site where I can look up all my stuff) that it's scheduled for just 15 minutes (previous appointments have been 1/2 hour).  I assume that, in her mind, the visit will be quick.  She will take a look at how I am (she hasn't heard from me, so she will expect no surprises) and then go over the treatment plan which is to go onto Methotrexate (MTX), the next drug, and phase out Prednisone, the current drug, over time.  We've already discussed this.  So nothing new will be expected by her.  Except, what she doesn't know.  My plan is quite different: to go off all prescription drugs - (Prednisone - pills  and Triamcinolone -  steroid cream). I want to  go all Natural. So this will be interesting.  My objective is

If Only I'd Known

If only I'd known helping others could be such a high.  I'd read that helping others made you feel really good and was good for your health, but I'd never really experienced it.  Maybe simply because I hadn't tried it? I had thought I ought to do some volunteer work, but hadn't .. just too selfish I guess .. or maybe ..well who knows .. I  don't want to indulge myself in too much self criticism - Ha!   But

Don't Tell Me You're Sorry

I'm not sorry so don't tell me you are.  Or you'll make me feel guilty for having told you about my disease.  I feel really good as you know if you're reading my blog. Why?  Well, this is a worthwhile mission and I'm in a position to carry it out successfully.  I see progress with what I'm doing and have

Health Care is Broken

   9/21/13
You already know that. So what's the big deal?  Talked today with a guy who's graduating with a Public Health Degree from a very  prestigious local University. Asked him how he liked his studies .. kinda shook his head, no apparent enthusiasm for what he's studying .. spoke about how bad the system is Big Pharma, Insurance Companies etc.  This guy is going on to study Pediatric Medicine.  That's great. What's awful is before he gets to med school, he's spent 4 years of his life and accumulated $150K in debt .. and for what? .. to learn about an inefficient,  politically based, blouted wasteful system.  A system overripe for creative destruction.  And now I'm real excited about some ideas stemming from these experiences that I think could make a real, maybe huge, difference. And even more exciting? I think I can launch these ideas and get them implemented.  More on this later.