Would "The Map" author please refrain from posting to this thread, please?
Since "The Map" author posts so prevalently here, replying to almost anything anyone posts, I'd like to first say that that there is nearly nothing I can say here where he won't post insisting on his methods and being very defensive about them.
PLEASE, I ask him, refrain from posting to this thread. Thank you.
I would like to know from someone else, from someone who has lived his protocol:
1) To what extent have you followed "The Map" protocol?
2) What suggestions under his plan have you not followed completely?
2a) Why were you unable to follow that suggestion?
(4) Do you have any concerns or difficulty with any part of the protocol?
(5) What percentage of white patches on your hands have experienced re-pigmentation?
(6) What percentage of white patches on your face has experienced re-pigmentation?
(7) In your case, to what particular part of his protocol do you attribute re-pigmentation?
(8) Has your repigmentation been long-lasting or have the white patches reappeared?
In researching his "protocol," to the best of my ability I have determined:
1) The author does not have Vitiligo.
2) He is not a doctor.
3) He posts here as a mission.
In a nutshell, I interpret the great girth of his protocol summarized with:
1) Take a Centrum-like vitamin.
2) Get checked for food allergies and eat a diet he describes.
3) Don't be unhappy or stressed in life.
4) Don't get scratched, punched. injured, or engage in bodily friction or avoid the rubbing of skin.
5) Use light treatments he describes.
6) Use creams he describes.
7) See your doctor to determine health problems.
Have I missed anything that anyone here has found in his plan and incorporates in their regimen that they believes works?
Folks, I imagine Michael Jackson had the very best advice like this, and the very best doctors and folks without Vitiligo telling him what to do and how to feel. I did not have Vitiligo at the time and I could only sympathize with the man. Now I empathize and have an inkling as to how he felt.
Please see the following article about him, and also see the images of his son, with a "patch" under his arm where I now have a very large lesion as well: http://www.truemichaeljackson.com/health/vitiligo/
You can imagine that young man's resources, and the lack of stress and all the well-intentioned doctors and "information gatherers" he has followed the well-understood methods available for Vitiligo sufferers across the globe.
I'll look forward to your replies, or even lack of them, and will gauge the success accordingly.
Thanks,
Tom
Replies
I'm posting back to this thread in hopes that others would dismiss previous heated disagreement, and post any success with the plan or parts of it that worked for them, indicating duration of repigmentation, on which parts of the body that occurred, and was the recovery permanent or did results fade in time? Can you offer pictures, particularly of hands and extremities that recovered?
I believe the plan or parts of it have merit and I would like to learn more from those who have followed it.
Thank you,
Tom
BTW, maybe some will join me in praying for Steve's daughter. He posted that she's been ill.
Thanks,
Tom
Thanks, Tom. Appreciated. Not *that* ill, thankfully. But it was scary and consuming enough that I didn't look at the site this past week. She had a rash all over her body and we didn't seem to be able to identify or control it. She's getting better--we think it was Scarlet Fever, even though she tested negative for strep, she either responded to the antibiotic or naturally turned the corner of whatever it was.
Gosh, what a scare! I can imagine your worry.
Thank goodness she's on the mend.
Prayers, regardless.
Friend,
Tom
Honestly, I disagree.
If, in your first reply to him, you had carefully refuted any of his points you felt were in error, I think the conversation might have gone differently. But by expressly disregarding his desire to have members independently evaluate your suggestions, you missed the opportunity to see what others would say in response and to refine your own messages.
Plus, you fanned the flames into the very thing Tom said he was trying to avoid. Tom jumped right back into it, unfortunately, but there are times when "discretion is the better part of valor."
So, disregarding him, gave him the right to be offensive ?
There's an old story told about Abraham Lincoln, who was very good at skewering his opponents through the written word. Basically, he learned that his ability to attack his opponents successfully in this way actually burned bridges and made him less effective as a leader.
Yes, disregarding Tom and giving him the right to be "offensive" would have allowed the members of the site to judge for themselves. Instead, you proved him right that you were not able to allow a conversation to take place without hijacking it.
Your contributions stand on their own. I'd suggest responding--in a thread of your own making--factually and unemotionally to his concerns (your relationship to Vitiligo, your recommendations, and the Amazon book description). Let the members who want to directly correspond with you in that and in your other threads.
Onward.
Steve,
You probably forgot to check the original thread ( http://www.vitiligofriends.org/forum/topics/food-and-diet-for-vitiligo ), where it started.
I'm sure you will change your mind after reading the offenses I have suffered, since you are definiteley a good person.
The current thread was a continuation of the one mentioned above.
Regards.
I am willing to ask that the thread be removed if it causes the book author great distress.
I honestly believe, however, that a reposting of the question benefits the community. At this point, however, and in the interest of harmony, I would leave that for someone else, if anyone is interested.
I'm sorry to have been so long in addressing this thread. My daughter has been very sick (not related to Vitiligo), and I've been preoccupied.
I have read through all the comments, and while I take a very laissez-faire approach to moderating this site, there are times when I feel I need to weigh in.
I see and appreciate the generous interest by Flavio to help others. In this particular case, however, I side with Tom. As I read it, Tom was not asking you (Flavio) to not post on the site in any other ways, just to respect a boundary on this thread so that Tom could get feedback not influenced by your perspective. While such a request has no binding authority, I think it was reasonable to ask and to expect.
All of us here struggle to understand, treat, and cope with Vitiligo. The last thing we need is bitter feelings amongst ourselves. There is plenty of opportunity, Flavio, for you to continue to help without ignoring Tom's originally-polite request.
I can imagine times when such a request in a thread for others to refrain from participating might not make sense; but in this case, I think it did, and I think the bickering between the two of you made it almost impossible for a reasonable discussion of the model to take place.
Tom may be done with this, but if not, and if he posts this reasonable request again, I'd like to ask you, Flavio, to honor it.
Thanks to both of you for caring.
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