Doc Says "Never"

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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
running some kind of study for the drug.  I understand they get money from the drug companies based on the number of people they get into a study. Makes me wonder. The Hopkins Primary Care Doc was also pushing hard for the drug.  Said it had a long safe history treating rheumatism.  In fact, after seeing her, I almost called the Derm Doc to say let's do it.  Whew!  That was close.  I'd hate to have that in my system and wonder what it would do to me, now or in the future.

The Doc gave me two topical ointments and wants me to apply one to my upper left arm and one to my upper right arm to compare the results.  I told him I prefer to stick with what I am doing topically ie:  coconut oil.  He said I could still do that all over the rest of my body.  But, I've decided not to run this test for him.Why contaminate my body with unnatural products when the natural is working so well?

Today, I noticed even more improvement. Looked in the mirror several times to make sure I was seeing what I thought I was seeing, reduced rash etc.  I had been shooting for 3 months cure for what is considered normally a 3 year disease.  Nice ring to that.  But, if the progress continues at this rate, it could be faster. My energy level and weight are both up now with the protein, avocado and banana smoothies.  The itches are long gone.  It's just day 21 since I started on my treatment program.

Below is the letter to the Chairman of the Johns Hopkins Department of Dermatology, which his assistant delivered to him today.  The actual names of the Docs involved are of course in the letter to the Chairman.  I decided to refer to them as X and Y for my public post to protect the innocent and the guilty :). 
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October 15, 2013

Mr. Sewon Kang, MD

Chairman

Johns Hopkins Department of Dermatology
Cancer Research Building II – Suites 209 & 210
1550 Orleans Street
Baltimore, MD  21231

Dear Doctor Kang:

I am writing to tell you of an incident which I believe represents a serious shortcoming in your department's treatment of a patient. One in which the department missed a significant opportunity to provide good patient care and more importantly, to learn from the experience to provide better care to other patients.

3 months ago, a 76 year old man, in excellent health, I experienced the onset of a rare disease, Pityriasis Rubra Pilaris and began treatment with my long-time dermatologist Dr. X of ________. As my condition worsened and with Dr. X's support, I sought answers with your Department of Dermatology. I was pleased with the doctor assigned to my case, Dr. Y as well as my experience with her in a number of appointments, until my last visit on October 8, 2013.

Prior to this last appointment, I had told her that I was going to pursue a “natural” course of treatment including diet, exercise, meditation, etc. While this may sound like a mild approach to dealing with this disease it is in actuality, anything but, and involves a quite rigorous application of a treatment plan, the details of which I would be glad to share with you, if you so wish. While Dr. Y did not endorse my plan she accepted that I was going to pursue it and wished me well, agreeing to monitor my progress with the understanding I could still go to her treatment plan, the use of the drug MethotreXate if improvement did not take place.

After adopting this treatment plan, I experienced “dramatic improvement” (Dr X's words) in the two weeks between appointments with Dr. Y. I was therefore eager to meet with her again and share the good news. Particularly, as Pityriasis Rubra Pilaris is considered a disease for which both the cause and the cure are unknown. Much to my dismay, Dr. Y neither recognized the improvement so obvious to me, and Dr. X, she was also unwilling to call Dr. X and verify his observations or review pictures he had taken that proved the improvement had indeed taken place. Again in Dr. X's words “the pictures don't lie”. Instead she strongly urged me to change course and go on Methotrexate a drug, which as you know, has very serious side effects, has, at best, inconsistent results and is not considered a cure. Upon my declining to change to her plan, we agreed that I would not continue to see her.

The purpose of this letter is to determine if Dr. Y's approach in this case reflects departmental policy or if, perhaps, there are others in the Dermatological Department more open to learning about a safer approach to treating this disease that appears to be working, with the further opportunity, thereby, of offering it to other patients now or in the future who seek treatment from Johns Hopkins.

Thank you for your time in reviewing this matter. I look forward to your response.  


Sincerely, 

Hugh C. Ronalds

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What do you think the response will be?   I'll let you know.    Thanks for reading!