User talk:OnaTutors

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WELCOME!
Please feel free to discuss Pyroluria. I am looking forward to hearing from you soon.
OnaTutors | T@lk 06:28, 7 April 2007 (UTC)

• You're the BEST, JFW! Thank you! Thank you! Thank you, for all of your help! OnaTutors | T@lk 09:17, 16 June 2007 (UTC)

Contents 1 Pyroluria discussion 2 Signature 3 Pyroluria moderation request from JFW | T@lk 4 Frustrated Wikipedian Requesting Assistance with SandyGeorgia (Talk) 5 Frustrated Wikipedian Requests Help from JFW | T@lk 6 Pyroglobulinemia

[edit] Pyroluria discussion

While editing this article, please adhere to the manual of style. Also, keep in mind that this is an encyclopedia, and encyclopedias don't generally give WARNINGS - they just cite authoritative information that would support discouraging particular substances or treatments. Finally, I hope you'll bear in mind that Pyroluria is not a recognised diagnosis in mainstream medicine, and that some caveats may be necessary to make this abundantly clear. JFW | T@lk 12:56, 15 February 2007 (UTC)

WARNINGS removed, per your request, to keep in the proper Wikipedia fomat.
Thank you for the clarification, JFW.
OnaTutors | T@lk, 16 February 2007

Looking a lot better. Sources are good. Could you consider using less boldface (see WP:MOS for reasons why text should be bolded) and formatting the tables in line with most other articles (see e.g. porphyria). JFW | T@lk 08:19, 25 February 2007 (UTC)

Thank you for the helpful sugesstions JFW!
You are teaching me so much about editing, webconstruction, and pyroluria.
OnaTutors | T@lk 13:51, 26 February 2007 (UTC)

My pleasure, OnaTutors. It is good to see how some work on a difficult topic can make a page much better. I find alternative medicine topics particularly challenging, as its tradition is much more oral than that of "mainstream medicine" with its textbooks. I notice you've added an "administrator" logo on this page. While you are free to do that, a Wikipedia administrator has certain powers that are generally given to longstanding and experienced editors. This includes functionality to block contributors from editing, rapidly roll back vandalism edits, and protect pages from editing. Votes are held on WP:RFA. I would recommend you wait a little while before applying for administrator privileges :-). JFW | T@lk 14:32, 26 February 2007 (UTC)

• • JFW, I will correct this immediately. I did not know the heading that I added was an "administrator" logo.
    After reviewing the HTML codes I found that it stated that, "the user of this is an administrator."
    Ooops! I just thought it looked pretty.  :o)
    Thank you for all of your helpful advise, JFW.
    OnaTutors | T@lk 15:07, 26 February 2007 (UTC)

[edit] Signature

I'm pleased you've adapted my signature to suit your needs. Please note that you've used the wrong link for your talkpage: instead of a dash (-) you should be using an underscore (_). Cheers. JFW | T@lk 09:00, 25 March 2007 (UTC)

• • Thank you! I appreciate the advice, JFW.  :o) OnaTutors | T@lk 06:07, 7 April 2007 (UTC)

[edit] Pyroluria moderation request from JFW | T@lk

Hi JFW,

Thank you for answering my formatting questions, zinc status test inclusion question, and teaching me to fix my signature.  :o)

However, another moderator has decided to take it upon himself to completely "reformat" the Pyroluria wiki and I do not agree with what he has done.

The following is from WLU, in the Discussion Forum of Pyroluria:

[edit] A mess

The page is a huge mess, I'm doing a big re-work. First, I'm re-formatting the references to make it more obvious that when you click on the link, it's an external link. I moved the sections that were just external links into the external links section. More to come. WLU 14:24, 6 April 2007 (UTC)

[edit] Sections

The sections I'm pasting below don't add anything to the article that I can see. Here's my problems with them, in bold italics beneath the sections:

Vitamins and supplements

Q: Is there another way to include the very important information about vitamin supplements that may be required by individuals that have this condition of high oxidative-stress, Pyroluria?

I feel that it is very important for individuals to know what supplements may be benificial and which supplements may be harmful to someone that is inflicted with nuetracutically dependent condition, Pyroluria.

Q: How else might I convey this information?

Thank you for your thoughtful and kind advise, JFW. I find the other moderator, WLU, very harsh and too critical and not very helpful, at all. The Pyroluria wiki community and I will appreciate any assistance that you may offer.

Thanx, JFW! I will continue my studies in my Web Contruction 1 course and patiently await your reply. With much appreciation, OnaTutors | T@lk 05:55, 7 April 2007 (UTC)

Some editors will take a critical approach, and I hope you'll be able to find some common ground. Pyroluria, like many other similar entities, is a hard subject to trace to reliable sources. Mainstream experts are verbose to a fault about their interests (e.g. there seem to be more reviews about Wilson's disease and paroxysmal nocturnal hemoglobinuria than patients with these conditions!) "Someone's website" is generally a poor source for anything.

Regarding your questions:

• Vitamin supplements - if you can produce reliable sources that recommend vitamin supplements in high oxidative stress states like pyroluria, then go ahead!
• What supplements may be beneficial - basically the same answer. If you can provide verifiable sources that support your claim that this is what practitioners recommend, then go ahead.

Hope this helps. JFW | T@lk 06:36, 8 April 2007 (UTC)

Incidentally, if you had a problem with my edits, you could have brought it up with me either on my talk page, or on the Talk:Pyroluria page. Most long-term editors on wikipedia are quite open to discussions, and my initial entry might be harsh, but I am happy to work towards consensus. Also, you may want to change the external links on your user page to look like external links - by making it look like a wikilink, you are going to surprise people who might be reluctant to click on an external link. WLU 17:02, 8 August 2007 (UTC)

[edit] Frustrated Wikipedian Requesting Assistance with SandyGeorgia (Talk)

Pyroluria

I don't know what to do, anymore.

All my hard work in the past has be removed to the discussion page.

I'm afraid of "disturbing" the Pyroluria wiki. That whatever work I do will all be removed for "discussion".

I read your comments that you made for your edits.

I do not understand how you can be so sure that Pyroluria does not exist! I do not even understand why you would say such a thing. Unless you could "prove" that it didn't?!?!?!?!?

In fact, "I" do have Pyroluria. And my symptoms since the diagnosis of Pyroluria have now stopped, since taking MEGA doses of vitamin therapy and eliminating foods that might otherwise cause me to have Cerebral (Brain) Allergies.

If you could please tell me how to better post in the wiki, Pyroluria, so that my posts would not be removed for "discussion", I would be very greatful.

I just want to help other individuals learn about Pyroluria so that they do not have to go through what I went through, searching the Internet, and calling libraries and universities to understand the condition.

Thank you for taking the time to read this.

I look forward to hearing from you soon. OnaTutors | T@lk 11:31, 26 May 2007 (UTC)

Hi, OnaTutor. I had to refresh my memory; it turns out I removed four sentences to the talk page six weeks ago. Content added to Wikipedia must be based on reliable sources; reading that page (and WP:V or WP:ATT) might help you understand the kinds of sources needed on Wikipedia. You might also review proposed guidelines at WP:MEDRS. jcglutenfree is someone's personal website (not a reliable source); a reliable medical source for a connection to pyroluria and epilepsy should be provided. doctoryourself.com and curezone.com don't appear to be reliable sources either, and a reliable medical article discussing allergies and pyroluria is needed. Pubmed is a good place to begin your search for reliable sources. On the talk page, JFW also gave several good starting places for looking up reliable sources. Since pyroluria is not a recognized medical diagnosis, you'll need to be very careful in sourcing the article, avoiding overreliance on sources with a POV, and expanding your sources to include all opinions for NPOV. SandyGeorgia (Talk) 13:44, 26 May 2007 (UTC)

[edit] Frustrated Wikipedian Requests Help from JFW | T@lk

Pyroluria

I don't know what to do, anymore, JFW.

All my hard work in the past has be removed to the discussion page.

I'm afraid of "disturbing" the Pyroluria wiki. That whatever work I do will all be removed for "discussion".

Another moderator, SandyGeorgia, (I think that's their name) has made very BOLD comments about the condition in their edits:

(cur) (last) 09:47, 9 April 2007 SandyGeorgia (Talk | contribs) (rearrange to conform with WP:LEAD, a non-existent condition can't be "diagnosed" but it can be "described")

I do not understand how this moderator can be so sure that Pyroluria does not exist! I do not even understand why that individual would say such a thing. Unless he or she could "prove" that it didn't?!?!?!?!?

In fact, "I" do have Pyroluria. And my symptoms since the diagnosis of Pyroluria have now stopped, since taking MEGA doses of vitamin therapy and eliminating foods that might otherwise cause me to have Cerebral (Brain) Allergies.

JFW, you've been SO very helpfull, to me, in the past. :o) I'm at my wit's end with this wiki. If you could please tell me how to better post in the wiki, Pyroluria, so that my posts would not be removed for "discussion", I would be very greatful.

I just want to help other individuals learn about Pyroluria so that they do not have to go through what I went through, searching the Internet, and calling libraries and universities, just to "understand" the condition.

Thank you for taking the time to read this, JFW.

I look forward to hearing from you soon. With Utmost Respect and Admiration, OnaTutors | T@lk 11:49, 26 May 2007 (UTC)

Respect and admiration! Now now... Let's see where this takes us.

Wikipedia needs an article on pyroluria. It is a diagnostic entity from the realm of alternative medicine; I have not found any "mainstream" medical sources lending credence to it. But the fact that people are diagnosed with it and take treatment for it means we need an article about it.

Nobody disagrees that cancer exists. Or pneumonia. These articles can therefore state as a matter of fact that cancer is diagnosed in a certain way and treated in a certain way. With pyroluria this is harder; given that mainstream medics would not recognise pyroluria as an established medical condition, we need to make it clear in the Wikipedia article that this disagreement exists, and that those who regard pyroluria as a diagnosis would "diagnose" it in a particular way (e.g. constellation of symptoms, particular biochemical tests etc).

I hold SandyGeorgia in high regard as an editor, and a cursory examination of his (rather extensive) edits to pyroluria does not give me the impression that any specific policies were violated. I do however realise that you have invested an enormous amount of time in making the pyroluria article comprehensive. Still, SandyGeorgia must have felt that there were some content problems. I hate to rub this in, but at the bottom of the Wikipedia editing box it says "If you don't want your writing to be edited mercilessly or redistributed by others, do not submit it." I completely understand your frustration, but I would try to talk to SandyGeorgia at first instance. I see you've already left a message, and SandyGeorgia has come up with a reasonable response.

The best thing here is that you've been WP:COOL about this. Other contributors, when faced with similar situations, have previously lost theirs, leading to nasty exchanges and trolling. Good collaborative skills are the bread & butter of successful Wikipedia participation. Well done. JFW | T@lk 10:04, 27 May 2007 (UTC)

[edit] Pyroglobulinemia

I had to revert your addition to pyroluria. The article you are referring to is on a completely different condition. It talks about a form of plasma cell dyscrasia with the production of abnormal proteins. Pyroluria is clearly not about proteins but much smaller compounds. The similarity in name does not in any way suggest a similarity in pathogenesis. Quoting "your neurologist", however eminent this neurologist may be, is original research. JFW | T@lk 11:34, 5 August 2007 (UTC)