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#20341 - 06/27/05 08:30 PM Board rules reminder
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
Everyone that is a member here agreed to this statement when they joined the board. This particular forum seems to have a lot of violations to the board policy.

Please note that advertisements, chain letters, pyramid schemes, and solicitations are inappropriate on this BB.

This only seems to be a problem for our newest posters.
_________________________
Jennifer
Ichthyosis-en-Confetti Type 2
Husband, Nathan - 10, Elliot - 7, Oliver - 4, all affected.
I also have an unaffected daughter, age 8.


email: jennifer at confettiskin dot com
facebook - find me on "ichthyosis mommy spot" or "friends of ichthyosis"

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#20342 - 07/01/05 04:57 AM Re: Board rules reminder
Edward Offline
Member

Registered: 06/15/05
Posts: 6
Loc: Abbotsford, BC, Canada
Hmm, interesting. You know, this is just a suggestion, but I think you may have to consider updating your policies for your forums considering that A) It appears that accepted allopathic medical science has very little to offer people who suffer with this rare type of disease, but more specifically B) this part of the forum is clearly satated as alternative therapies.

Where would you think that alternative therapies would originate from? A drugstore?

If you know much about the recent history of natural herbs, supplements, etc. Most of them have used a network marketing approach to market their products. It's just a guess to me but I believe the reason they do it is probably because that form of marketing has been proven time and time over as a viable way to bring a new product to the mainstream.

In any case, if the help you all are looking for is subject to beinig bicketed by forum rules, then I have to leave that in your hands, but in my opinion, you arent going to have much hope in finding workable, alternative solutions without the help of people who may have stumbled onto new products or opportunities that you have not.

Zoner

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#20343 - 07/01/05 05:02 AM Re: Board rules reminder
Edward Offline
Member

Registered: 06/15/05
Posts: 6
Loc: Abbotsford, BC, Canada
Furthermore, if anyone has anything at all to post into a forum titled alternative therapies, they are more than likely going to have to violate one or more of those forum rules just by saying anything at all of importance in here.

What sort of alternative therapies are people allowed to discuss in this forum without said discussion being viewed as advertising for instance? Any mention of any possible solutuion as far as I am concerned is advertising, unless I missed something in Business 101.

Anyway, I hope you all find solutions to whatever ales you.

Edward Kerrie

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#20344 - 07/01/05 06:33 PM Re: Board rules reminder
Les Avakian Offline


Member

Registered: 08/13/00
Posts: 680
Loc: Fresno, Calif. USA 93705
Hello Edward
I have been a part of this wonderful ichthyosis board for almost 7 years now and a part of our ichthyosis foundation since 1982.It is long overdue that I set the record straight on what can be said regarding solicitations and advertisements for financial gain.It is specifically stated by the sole owners of this website, Chris and Laura Phillips,that no one can advertise a product for self gain.It is their proragative, alone, in setting guidelines they feel appropriate for this place we can share experiences,questions,ideas, and commoraderie.They have developed this site, financed this site, and through their hard work and devotion, have brought us all together. They have earned the right to set parameters they feel necessary to insure a not for profit board.We all come to this board trying to help each other with their skin problems.All of us have different experiences, suggest methods of treatment. and try to help each and every individual without the "for profit" dollar figure in mind. I suggest if you feel wronged, start your own website, finance it with your own money, and market it with the education you received by taking Mkrt.101.
Sincerely,
Les Avakian


[This message has been edited by Les Avakian (edited July 01, 2005).]
_________________________
Les Avakian

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#20345 - 07/02/05 07:59 PM Re: Board rules reminder
Edward Offline
Member

Registered: 06/15/05
Posts: 6
Loc: Abbotsford, BC, Canada
I don't feel that I have been wronged in any way. I think the point that I was trying to make is that you seem to be wronging yourselves as a support group by trying to censor your own network of information.

I've already decided to follow your rules and policies and to stop making suggestions to help your support group.

It's clear to me that you don't want recommendations, advertisements, etc coming from people who would be in a position to financially gain from sharing the information.

To me that is just a rediculous standing since some party is ALWAYS going to financially gain as long as any product is involved. If I had mentioned any product that I dont particularly happen to distribute or financially gain form, I guess that you would have had no problem with that whatsoever. But whoever sold that product would have financially gained from it had anyone decided to try it.

At the end of the day, I am not at all bothered one way or the other. Specifically because I am not the one missing out. I take the product that I previously recommended and it does wonders for me, also for my frineds and family that I have now shared it with and in about the next few years, the product is going to be a household name.

The fact that I may not gain financially by advertising said product through this or any other forum due to your forum policies is duly noted.

I find that a shame to your policy makers as well as your policy enforcers because all you are doing is shutting down something that could potentially help anyone who gives it a try.

How about this option, look into the stuff and if you decide to try it, DO NOT CALL ME and I WONT help you get involved with the product.

Would you consider it a valid suggestion then, as long as someone else other than me had finacial gain if someone decided to try the product?

You guys are so focused on whether someone is trying to make a buck that your willing to discard any information that comes from someone potentially selling something in order to follow policy that you could very well miss out on a stellar solution all in the name of what seems to me to be protecting the best interest of all of the people who participate in the forum.

I would have preferred something more along the lines of someone perhaps notifying me that YES they tried that particular product and it DID NOT work rather than policy police notifying the members of the forum that certain posters are violating policy and procedure.

People have brains and people have the ability to do their own research and people have the abilty to make their own choices in life. Except of course, right here in your forum because that freedom has been taken away by those who made certain policies.

And YES, I will abide by your policies as stupid as they seem, you won't hear anything more from me.

Good bye and good luck.

Edward

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#20346 - 07/07/05 08:23 AM Re: Board rules reminder
Laura Phillips Offline


Member

Registered: 07/31/08
Posts: 12
Loc: Detroit, MI
Now that I've done some quick catching up on recent postings here and have stopped laughing, I can respond:

Hearsay and Les--many thanks for speaking up on my behalf. As best I can tell from the posting history (here and on other threads), Edward does not have ichthyosis himself and is simply a distributor marketing his product. And that, you correctly pointed out, violates the terms of use of this bulletin board. With only that understanding of Edward's identity and background, if he chooses never to post here again, that's probably a good thing (will save me time, counseling, and simply locking out his ID, which he was quickly working his way toward anyway).

I would like to clarify, though. It was Edward's indignant responses that had me laughing. To say that we're only hurting ourselves, cutting ourselves off from potentially helpful information, because someone, somewhere, is going to benefit financially (even indirectly) from anything positive you say here about any product, and, therefore, following the terms of use of this board constrains, in a very destructive manner, what you post here, is simply silly. That interpretation of the terms of use of this board is a tortured, extreme, and incorrect interpretation.

Here are some additional thoughts:
  • If you have ichthyosis yourself and are not a distributor/agent/seller of the product you are discussing, it's going to be very hard for you to go wrong under the terms of use of this Board if you share information about products that you believe are helpful.
  • If you have ichthyosis yourself and ARE a distributor/agent/seller of the product you are discussing, a great deal of care will need to be exercised in discussing the product with which you are associated. Simply disclosing that you are a seller or otherwise stand to gain financially is NOT sufficient under the terms of use. I appreciate that you may feel passionately that the product you represent is terrific in every way and would be a great help to people here, but you simply may not use this board to market your product (this could result in a direct financial gain to you personally). And if that has the effect of reducing the info available to people here, than so be it. This isn't the only place on the web that anyone visits. You have other ways of attracting customers and sharing information, and users of this board (potential customers) have other ways of finding out about your product than hearing about it on this board.
  • If you do not have ichthyosis yourself (or a related skin disease) and are simply marketing a product, I urge EXTREME CAUTION to you in posting on this board about your product. Simply posting that you endorse/sell/represent a product and will help people obtain it for money would be a violation of the terms of use of this board. Even posting information on this board and offering to send FREE samples to anyone who was interested (in hopes of later attracting paying customers) is really just a form of prohibited advertising. If you would like to make offers to provide your product for free, forever, to anyone with ichthyosis, that would be different. If you would like to provide the complete recipe for your product on this board, that would be different. Most people looking to sell a product are, however, unwilling to do either of these things (it tends to undermine the whole "they're looking to directly benefit financially, at least at some point, from this dialog").


In short, no one with ichthyosis should feel that this policy contrains your ability to share information with other people about ichthyosis and possible treatments--when you do not stand to gain financially directly from the converstion. DIRECT FINANCIAL GAINS is what this policy is targeted at. INDIRECT financial gains are not what is at issue here--DIRECT financial gains by agents/resellers/etc is the issue. So far, in the history of this board (which is getting longer and longer), no has had trouble with this policy or been offended by it other than a couple of people who were sellers of some kind.

Let me also take this opportunity to give a shout-out to all the regulars here who keep the sense of community going on this board--many thanks for all your hard work and energy. It's a good feeling to know that, even though Chris and I can't be here very often anymore, the place is in good hands.

Laura



[This message has been edited by Laura Phillips (edited July 07, 2005).]

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#20347 - 07/07/05 08:42 AM Re: Board rules reminder
Deidra Offline
Member

Registered: 03/08/02
Posts: 162
Loc: Lancaster, Ohio USA
I just want to support Laura in her Bulletin Board Policies. I for one love coming here and hearing people's ideas and suggestions and knowing they come from personal knowledge and experience of ichthyosis rather than solicitors.
Dee
_________________________
Dee

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#20348 - 07/07/05 09:42 AM Re: Board rules reminder
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
Laura, thank you for posting. I'm sure you realize from both my email to you and from reading this board that I wasn't targeting Edward. We had a spate of marketers directly attacking me in the penta water thread for debunking the supposed science behind it. There have also been a few people pushing Chinese medicine and some other random fruit-derived products since the beginning of this year, and truthfully, I was getting tired of the advertising.

Like Dee, I enjoy coming here for help and to offer help to the new visitors. I thank you for making this haven available to us.

Jennifer
_________________________
Jennifer
Ichthyosis-en-Confetti Type 2
Husband, Nathan - 10, Elliot - 7, Oliver - 4, all affected.
I also have an unaffected daughter, age 8.


email: jennifer at confettiskin dot com
facebook - find me on "ichthyosis mommy spot" or "friends of ichthyosis"

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#20349 - 07/07/05 08:28 PM Re: Board rules reminder
immystique Offline
Member

Registered: 03/09/05
Posts: 271
Loc: Grand Junction, CO, USA
lol. I have to agree here. One of the things I love about this board, besides meeting people like me, is hearing what works for everyone & what to watch out for. I'm always on the lookout for something that's less greasy than Vaseline!
Apparently some people don't realise that there is a HUGE difference between saying "visit my website at blahblahblah.com for the latest 'cure' for ich" versus saying "I use such-and-such scrub and it really helps get the flakes off".
It's the posts claiming to "cure" ich that really get me rotfl! The sad thing is, the new post-ers who have infants w/ this rare & confusing condition read the word "cure" and cling to it like a cat on a tree in a flood.
_________________________
If the grass looks greener on the other side, maybe it's time to start watering your lawn!

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#20350 - 07/08/05 07:18 AM Re: Board rules reminder
Lisa Marie Offline
Member

Registered: 01/04/01
Posts: 168
Loc: NY
Laura - It's been awhile since you've been on here and it stinks that you have to deal with the childish temper tantrums of certain people. For those of us who come to this site and feel they are a part of the Ichthyosis community, we have total desire to help each other in any way we can. All without a profit or even a thanks. Anytime something works for me, I'm eager to tell someone else in hopes they'll find relief also. It burns me up when someone comes on this BB and starts spouting information as if it will be a cure for us. It's obvious they have no idea how Ichthyosis works and what will help us.
So thank you for this site. It's been a link to a world my friends and family don't quite get.

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#20351 - 07/08/05 01:56 PM Re: Board rules reminder
Danusia Offline
Member

Registered: 08/14/00
Posts: 63
Loc: canada
I'm so glad that this topic has been addressed. I was also getting fed up with all the "ads" and the penta water poster made me so mad that I had to restrain myself from posting because the language I would have had to use would not have been fitting for this board and might have reduced me to his level of understanding and communication. I have always thought of this board as an oasis of support for those of us who may not have other kindred spirits in our lives. Thank you for clarifying that this is indeed so!

[This message has been edited by Danusia (edited July 08, 2005).]

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#20352 - 07/19/05 02:05 PM Re: Board rules reminder
Laura Phillips Offline


Member

Registered: 07/31/08
Posts: 12
Loc: Detroit, MI
Hearsay/Jennifer: I hate to admit, but I don't check our ichthyosis.com email very often (and don't have the ability to do so other than from home--and I'm not home very often!). Anyway, would you be so kind as to resend your email to me at ljpindc@yahoo.com? That email is also associated with my bulletin board profile now (for easier reference).
Many thanks,
Laura

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#20353 - 07/20/05 08:45 AM Re: Board rules reminder
Nichiro Offline
Member

Registered: 07/19/05
Posts: 31
Loc: Detroit
Hello friends,

I read with interest views expressed by members on issues of rules and about alternative therapy.

My postings on Auto Urine Therapy were not exactly welcomed .
I want to put a question to the Administrator directly as to how one can just brush off a therapy which is thousands of years old and the world has just awakened to it?
I am talking of Amroli or AUTO URINE THERAPY as written by Lord Shiva in DAMAR TANTRA.

I would wait with interest to know from you friends.
_________________________
Use what you have
You'll get what you don't have.

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#20354 - 07/20/05 10:06 AM Re: Board rules reminder
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
You didn't break any rules, which is a pleasant change.

However, you haven't managed to tell us *why* your therapy is so great. Nobody is brushing it off, just looking for answers about how it works.
_________________________
Jennifer
Ichthyosis-en-Confetti Type 2
Husband, Nathan - 10, Elliot - 7, Oliver - 4, all affected.
I also have an unaffected daughter, age 8.


email: jennifer at confettiskin dot com
facebook - find me on "ichthyosis mommy spot" or "friends of ichthyosis"

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#20355 - 07/20/05 10:51 AM Re: Board rules reminder
Nichiro Offline
Member

Registered: 07/19/05
Posts: 31
Loc: Detroit
Hello Hearsay,

When so much of literature with people's stories in their own words is available on www,
where is the need to prove it for the nth time to satisfy you ?
You seem to be bent upon not even read what you do not like.

You alsmost sound as if you want only modern allopathic medicines usage should be practised by people over here.
No..Hearsay. This is absolutely one track approach.

Time and again I am stressing. Proof of the pudding is in eating it.
Either you try it out and talk or CEASE TO TALK against it.
I have used this therapy and know how wonderful it is.
_________________________
Use what you have
You'll get what you don't have.

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#20356 - 07/28/05 08:18 PM Re: Board rules reminder
sekud Offline
Junior Member

Registered: 07/28/05
Posts: 2
Loc: Woodbury, Ga, USA
I am new here and I was just reading all the different posts. I am just floored at this. I have used urine on my face, when I was a desperate teenager trying to get rid of acne. How gross I was. It did nothing but smell bad to and for me. I work at a dialysis center now. I know what the kidneys filter and send out and there is no way ever that I would even think about rubbing it back on my body, much less drinking it. That is rediculous. I don't have ich, but my husband does. And for someone to come in claiming this is going to solve it all, should not even bother. People that don't have this condition has no clue about the problems and the pain that ich causes. And I agree with the other post that hearsay I believe had in another if this treats AIDS then what is Africa waiting on. I think if you have something like that you believe in then fine, but until you know the deal with what the people with ich go thru and don't think this will work then don't get mad, that is what they choose. And anyway I don't see where pee and but moister in anyones skin. Thats a new one for me. I personally don't want my husband rubbing urine all over him. That is a way to get out of the body what needs out, not rub it on the skin to be absorbed right back in. Hope to not step on any toes to bad, but until you know and understand this condition I wouldn't just come in and tell people to drink or rub urine on them and it will just heal them up.

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#20357 - 07/28/05 11:53 PM Re: Board rules reminder
LauraAnn Offline
Member

Registered: 04/01/04
Posts: 220
Loc: Chicago, IL, USA
Thank you, sekud, for posting this.
I am so absolutely angered at these recent posts by these people coming in here on this bb thinking they are going to speak into something that is really not their area, and taking it personally that we all aren't jumping in there and eating up what they have to say?? Give me a break. It is offensive to me, I read this bb every day, and gather info for my boys, and only speaking when I feel I can be an encouragement, and feeling safe when I can post probs and know that everyone who thinks they can help will reply to me, and they all are dealing with this problem in their own lives. I wish there was some way some of these new postings could be blocked (specifically nichiro and edward), or something, because they don't belong here, as far as I'm concerned, they are not dealing with ichthyosis personally or in their families, and I find them incredibly offensive, trying to push and sell some product or idea out of pride......okay, give them the benefit of the doubt, even if the motives are "pure", then if that's the case, if someone says basically "no thanks, don't think it will help this condition", then I don't think that these people would be so offended, if their motives were "pure". This is a forum for those who deal with this condition in their lives, not a forum for people to tout their "miracle" ideas and wares. It is different when someone posts something new or exciting they've found in their journey toward dealing and living with ichthyosis. That, is obviously legitimate, and that, I would imagine, was the purpose in creating this "alternative therapies" section of the bb.
Okay, vented, sorry all, I just don't think some of these recent posts have a place here.
Thanks to all of you others for being such a support to me and my family, though. I don't imagine that many of you know how helpful you ALL have been, and I know you will be. Extremely grateful for this bb. Thanks and blessings upon you all...
Laura Crozier
_________________________
- - - - - - - - -
*Laura
Mom to: Joshua (9yrs) and Matthew (4yrs) both affected with recessive x-linked ichthyosis

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#20358 - 07/29/05 01:44 AM Re: Board rules reminder
Nichiro Offline
Member

Registered: 07/19/05
Posts: 31
Loc: Detroit
Sekud and Laura Ann,

How typical ?

I do not blame you for taking this stance .
It is ingrained in the heads by those white coated , sthetescope wielding knowall doctors who have not even known as yet HOW AN ASPIRIN WORKS.
No one is forcing you to read what I post. If you don't like it., so be it. But why you want to prevail over others thinking.?

This is a section about ALTERNATIVE THERAPY.
AUT is an alternative form of medicine which has hospitals in India and other countries.
And mind you , these hospitals have no Post Mortem facility\ies because nobody ever died due to ill effects of AUT.
These hospitals do not fleece you for blood,urine, histo, patho and all those tests.
They also don't charge you for medicines.

Compare this to the following scenario.

If your docs give you medicines, why you are still suffering ?
Why take banned drugs to get relief ?
Why expensive tests?
Your medical science is hardly less than 100 years old and it claims to know all answers ? It is pure BS.This system of medicine is thousands of years old. And till today, no even a single person has died due to side effects. Can your system give answers for the deaths that it caused ?

Gimme a break willya ?

And please do not think I do not know what it is like suffering from a condition which is tragic. I have lived with cancer in my family for many years and I know how it feels.
Thank God that I stopped tobacco in time and cured myself of something that would have killed me by now (same way four members of the family died due to cancer induced by tobacco)

I can go on and on and you too can go on and on.
Please do not try to influence people . People are intelligent and if they want, they will try AUT.

May peace be upon you.

Nichiro

[This message has been edited by Nichiro (edited July 29, 2005).]
_________________________
Use what you have
You'll get what you don't have.

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#20359 - 07/29/05 07:06 AM Re: Board rules reminder
Lisa Marie Offline
Member

Registered: 01/04/01
Posts: 168
Loc: NY
Nichiro - Even though there have been no deaths by AUT it's disgusting. Why do you think we wash our hands after using the bathroom?...because we don't want urine, any amount, on us. To each their own. If this works for you, wonderful. Keep it up. However, I will stick to my methods and keep what my body wants to rid itself of out of me.
The problem with certain people who want to 'help' the Ich. community, is that you come on here and almost force your opinion on everyone. Say what you want and if someone is interested, they will contact you. But the fact that you and Edward argue back and forth might possibly take someone who may be interested in whatever you are saying and turn them the other way. Nobody likes a pushy person.
Most of us on here are very open-minded. Some of the methods used in our daily lives can be viewed as extreme, but they work. So you don't need to go overboard in trying to pull us to your side. If someone is interested, they'll respond to your posts or contact you privately.

[This message has been edited by Lisa Marie (edited July 29, 2005).]

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#20360 - 07/29/05 08:55 AM Re: Board rules reminder
Nichiro Offline
Member

Registered: 07/19/05
Posts: 31
Loc: Detroit
Lisa Marie ,

You wrote,

The problem with certain people who want to 'help' the Ich. community, is that you come on here and almost force your opinion on everyone.

Show me an instance where I pushed any body that they must follow what I say ?
And who says that whatever your body removes from it is a waste product ?

If I were to tell you that Heart attack would surely be fatal if injection of UROKINASE in emergencies is not given to patients ?
Urokinase is a product synthesised from Urine (Human urine). Only now they have started to prepare clinically in labs.
Our fathers and may be grandfathers who have lived to tell a tale after a Heart attack must thank Human Urine for production of Urokinase.

Humans eat and drink far more offensive products made out of /that come out of Animal bodies including their by products.

Just because your organ to produce urine is situated near another organ, it does not make it offensive in nature.

I do not want to over sale but facts remain facts.
Approach anything new with an open mind.
That would be my request.
Nichiro
_________________________
Use what you have
You'll get what you don't have.

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#20361 - 07/29/05 10:15 AM Re: Board rules reminder
Angel24755 Offline

Member

Registered: 05/13/05
Posts: 633
Loc: PA
[QUOTE]Originally posted by Nichiro:

Show me an instance where I pushed any body that they must follow what I say ?
And who says that whatever your body removes from it is a waste product ?<<<<

I have been reading this thread and haven't said a word but I just have to ask...
Nichiro, if you do not have Ichthyosis and you do not have family with Ichthyosis then why exactly are you here??
Fine...you have said your peace and you have told the "wonders of urine". By continuing to argue your point, you are pushing this on other people. You obviously will not be happy until somebody finally agrees to drink their own urine and it doesn't look like that's going to happen. If you simply wanted to mention it in case it would help people here, then fine, you mentioned it. IMO...its time for you to move on. I am here because I have two children with Lamellar Ichthyosis. In my opinion if you are not coping with Ichthyosis, living with somebody that has it, or caring for somebody that has it then you have no "long term" place here.
BTW...if rubbing urine on the body is going to be a "cure" for Ichthyosis then why is it that my 3 year old and my 1 year old with Lamellar who both wear diapers with urine in them most of the day still have issues with Ichthyosis on their diaper area???
I would say that if I fed my children their own urine, that would be considered a form of abuse here in the USA and I would never even think of it...gross gross gross!
_________________________

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#20362 - 07/29/05 12:38 PM Re: Board rules reminder
ShaunaJ Offline
Member

Registered: 07/29/03
Posts: 233
Loc: Ogden,Utah
Angel I was saying that same thing to my hubby last night. If we here in the USA put our childs own urin on them we would get in trouble for abuse. I have 7 year old with Lamellar Ichthyosis and when she was in diapers her diaper area didn't look any better either. I do get tired of these people who do not have ichthyosis or a family member with ichthyosis thinking they have " a cure". Like angel said just say your peace and move on. Don't keep trying to argue your point or push for people to try it. If you don't have ichthyosis or have somebody close to you that does you really have no reason to hang around here. We have all read what you have had to say about AUT if somebody truely wanted to try it they can email you.
_________________________
Shauna Johnson
Independant Consultant
Cookie Lee Jewelry
"Choose a job that you LOVE and
you'll never WORK a day in your life!"

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#20363 - 07/29/05 12:54 PM Re: Board rules reminder
Nichiro Offline
Member

Registered: 07/19/05
Posts: 31
Loc: Detroit
Angel24755,
You wrote,
"I would say that if I fed my children their own urine, that would be considered a form of abuse here in the USA and I would never even think of it...gross gross gross!"

And you would gladly agree to inject yourself with "UROKINASE" made from human urine.
Are you prepared to drag your scientists of drug companies to court for feeding you with filth?

Your own scientists are now desperately looking towards native medicines as they have exhausted all possible avenues in search for curing sideeffects caused by modern medicines.

AUT is a part of YOGA that the whole world has come to value.

How do you think that AIDS came about ?
How many of westerners ever asked their parent's doctors as to what medicines my Mom or dad took when she was carrying you ?
Why don't you think for once that your parents might be allergic to some medication which resulted in your having this body condition ?
I have a brother and a sister duo suffering from worst case of Ichthyosis in my relative's home. I very well know what it means. So do not ever ask me the question as to why I am here in this forum.
I have given them the same suggestions about AUT.
Just like you , they also need time to let this idea of AUT therapy sink in.

You wrote, that who in your family suffers from this dreaded condition ?
Can't you make out now from my spirited and concerned postings that your pain is felt by me and your pain is my pain.
Only if I could show my real feelings to you guys.
If you ever read about what people do to get rid of cancer, you will feel that AUT is cake walk.
Just last month I read about an ESKIMO therapy to eat very old rotten meat which stinks so badly that to eat so much putrified meat would make even a scavanger like hyena turn away.
And yet people did just that , ate it and have been cured of some form of cancer. I
am sure that if one wants to try AUT they will try it.
I am not pushing any body to do it.
I am just putting up a case, a possibility.

Nichiro

Ps.
You gave me an example of two of your children about Nappy full of urine.
Let me tell you that there is a method that needs to be followed in AUT application on body.The urine that is to be applied is first urine of the day and not any time urine.
_________________________
Use what you have
You'll get what you don't have.

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#20364 - 07/29/05 12:58 PM Re: Board rules reminder
Nichiro Offline
Member

Registered: 07/19/05
Posts: 31
Loc: Detroit
[QUOTE]Originally posted by Nichiro:
[b]Angel24755, and ShaunaJ

You wrote,
"I would say that if I fed my children their own urine, that would be considered a form of abuse here in the USA and I would never even think of it...gross gross gross!"

And you would gladly agree to inject yourself with "UROKINASE" made from human urine.
Are you prepared to drag your scientists of drug companies to court for feeding you with filth?

Your own scientists are now desperately looking towards native medicines as they have exhausted all possible avenues in search for curing sideeffects caused by modern medicines.

AUT is a part of YOGA that the whole world has come to value.

How do you think that AIDS came about ?
How many of westerners ever asked their parent's doctors as to what medicines my Mom or dad took when she was carrying you ?
Why don't you think for once that your parents might be allergic to some medication which resulted in your having this body condition ?
I have a brother and a sister duo suffering from worst case of Ichthyosis in my relative's home.The girl who is elder is having it for over 20 years and her brother is having it for 12 years now. I know what it does to a family financially psychologically and socially. I, very well know what it means. So do not ever ask me the question as to why I am here in this forum.
I have given them the same suggestions about AUT.
Just like you , they also need time to let this idea of AUT therapy sink in.

You wrote, that who in your family suffers from this dreaded condition ?
Can't you make out now from my spirited and concerned postings that your pain is felt by me and your pain is my pain.
Only if I could show my real feelings to you guys.
If you ever read about what people do to get rid of cancer, you will feel that AUT is cake walk.
Just last month I read about an ESKIMO therapy to eat very old rotten meat which stinks so badly that to eat so much putrified meat would make even a scavanger like hyena turn away.
And yet people did just that , ate it and have been cured of some form of cancer. I
am sure that if one wants to try AUT they will try it.
I am not pushing any body to do it.
I am just putting up a case, a possibility.

Nichiro

Ps.
You gave me an example of two of your children about Nappy full of urine.
Let me tell you that there is a method that needs to be followed in AUT application on body.The urine that is to be applied is first urine of the day and not any time urine.

(Dunno how this piece became bold lettered)



[This message has been edited by Nichiro (edited July 29, 2005).]
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#20365 - 07/29/05 01:50 PM Re: Board rules reminder
Sofie Offline
Member

Registered: 07/22/01
Posts: 118
Loc: Switzerland / USA
Nichiro:

There is one point I must admit I agree with you: western medicine has not all the answers but from my experience alternative medicine hasn't either - nature and the human body are such a great creation that we probably will never have all the answers.

I work in a hospital that offers both 'kinds' and my experience is that in some cases western medicine helps in some cases alternative medicine helps and in some cases it needs both. I strongly believe that it is a very, very personal choice every individual has to make, as it is also linked to how an individual views the world, human beings, nature etc.

As you noted correctly this section of the board is meant for the discussion of alternative therapies. It is always interesting to hear about new options, ideas and experiences - this is what this bb is meant for. I think we all heard (or read) that you believe that AUT helps. I think you also understod by now that most of us are not really thinking about trying it. Please understand that your opinion was heard and that your opinion is respected but that you are also expected to respect the opinion of the bb users. I am wondering what your motive is to continue this discussion as you do not seem to add new aspects to it. On contrary, I have the impression that your posts become more and more aggressive and I strongly feel that this is not the right place for such exchange - I personally find it a waste of energy. This bb is meant for support, encouragement and constructive discussion.

Sofie

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#20366 - 07/30/05 01:21 AM Re: Board rules reminder
Jodyl888 Offline
Junior Member

Registered: 03/06/05
Posts: 3
Loc: Sydney, Australia
To the person that wrote "there have been people pushing Chinese medicine (etc., etc.,)...and quite frankly I am tired of it".
I am a qualified practitioner of Chinese medicine (Bach. of Chin. med in TCM & MPH) and a sufferer of quite severe EHK. Without combined knowledge of the benefits and failures of BOTH Western medicine and Chinese medicine, diet, climate influence and lifestyle approaches, I would not be able to manage my condition so well and keep myself relatively blister and infection free.
This is a forum for people with icthyosis to share important information. i have never met anyone else with this condition and neither have most of the dermatologists I have seen. Although we may rely on our local pharmacists for creams etc., our own experiences are probably the most impotrtant to others with this condition. Therefore people with EHK and other forms of icthyosis should be able to talk about whatever product they want if they think it may help others.
There is a section on this site for 'Retinoids' where anyone can mention any drug they feel free to because they want to know more about it. Is this free advertising for the drug companies? Possibly but not necessarily. If we can mention their products, we can talk about anything else. However, I don't agree either that people who are not affected by icthyosis should try and sell things for their own profit.

I have taken Retinoids and they have had disastrous consequences for me personally, and they do potentially have very nasty side effects. I am certainly not an advocate ofr this type of medication. However i do recognise the benefit for some, and it is important to understand what works for one person, might not be good for another. I don't accept that a lot of these drugs necessarily have more importance than some forms of 'alternative' medicine. Neither Western or Chinese medicine has all the answers.
Incidentally, Chinese herbal medicine for this sort of condition is based on individualised formulas, so there is no marketable product. It is important whether its a GP or practitioner of Chinese medicine, to consult someone who has some knowledge of this condition.
Once again we are all here to help each other.

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#20367 - 07/30/05 03:03 AM Re: Board rules reminder
Nichiro Offline
Member

Registered: 07/19/05
Posts: 31
Loc: Detroit
Hello Sofie,

You wrote,


"I work in a hospital that offers both 'kinds' and my experience is that in some cases western medicine helps in some cases alternative medicine helps
I am wondering what your motive is to continue this discussion as you do not seem to add new aspects to it. On contrary, I have the impression that your posts become more and more aggressive and I strongly feel that this is not the right place for such exchange - I personally find it a waste of energy. This bb is meant for support, encouragement and constructive discussion."

Sofie


Sofie,

I read with interest what you wrote.

First thing I want to ask you is,
"Does your hospital offer AUT ?"
If your answer is NO, then I request you to first know about AUT.

When I first posted on Alternative Therapy section, people immediately condamned to very idea even before they understood or read about this ancient yoga branch .
Not even a single individual ever asked to discuss this topic with an open mind.
In such a case, how can I put newer aspect and positive things about AUT before anybody ?
Am I being aggressive ?
Oh No...On the contrary people should know the difference between being Aggresive and being Passionate in putting forth their point of view.
If you think I am being aggresive, then I beg your pardon. Truth is always naked and painful to digest.
Truth is that Western medicine is a suppressive therapy . It suppresses the symptoms. We ehould look at curative therapies.

A person from Australia has written about chinese medicine. That too is a very ancient form of treating diseases. People survived for 100,000 years without any antibiotics.
They relied only on Ayurvedic, chinese or Tribal medicines depending upon where they lived.
Whereas in western modern world,
after the advent of Antibiotics, within 60 years, the whole human population of the world has become immune to action of such medicines to a greater orr lesser extent.
Why ? AIDS i IMHO is the direct result of such western medicines being used without totally understanding the nature of human body , its reaction to such medication and such things.
Why do Ayurvedic, chinese and Tribal medicines are now looked upon by western medicine people to find answers for diseases now.?

All I ask is HAVE AN OPEN MIND AND DISCUSS THE WHOLE AUT AT PEACE.
Only question and answers when discussed can bring forthe truth and benefits.

Nichiro



[This message has been edited by Nichiro (edited July 30, 2005).]
_________________________
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You'll get what you don't have.

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#20368 - 07/30/05 11:31 AM Re: Board rules reminder
Angel24755 Offline

Member

Registered: 05/13/05
Posts: 633
Loc: PA
[QUOTE]Originally posted by Nichiro:

>>I have a brother and a sister duo suffering from worst case of Ichthyosis in my relative's home.The girl who is elder is having it for over 20 years and her brother is having it for 12 years now. I know what it does to a family financially psychologically and socially. I, very well know what it means. So do not ever ask me the question as to why I am here in this forum.<<

Then I must ask...
In your original post about AUT you said (and I quote) "I came across Ichthyosis for the first time 2 months back".
So...you have only known this brother and sister duo for 2 months?? You never mentioned family or children with the disease in your introduction...you said you came across Ichthyosis and wondered if AUT could work with Ichthyosis.
Nobody here has expressed interest in AUT since your original post but yet you continue to argue and push it which leads me to believe that you actually enjoy the fight. I have my routine for my children down pat and I don't push it on anyone here. You only have to mention it once...you have said it over and over and over again. Obviously nobody here is interested right now. It seems like you are desperate just for the attention and enjoy the feud. I went to the web sites you provided and yet I have no disire to rub urine on my children or force them to drink it (which as I mentioned before would be considered child abuse by me and most in the USA). That being said...I am entilted to my opinion as are you but what you are not entitled to do is shove it down our throats. Enough is enough.
If you are really here because you know this brother and sister duo (which isn't clear to me if this is your family or just people living with your family) then sit back, read the other posts and stop the fight. It's getting old. If you are simply interested in AUT and not interested in anything else this board has to offer then go start or find a board for AUT. I know myself that I will not be replying to any of your future posts involving AUT and suggest others who are disgusted by it to do the same. We are feeding your need to argue and to me that just doesn't make sense. You are turning these peaceful boards that I myself find a haven into chaos.

One other thing I would like to address...
You wrote:
"Can't you make out now from my spirited and concerned postings that your pain is felt by me and your pain is my pain."

Don't even claim to know the pain that is felt by me, my husband, my children, or anyone else on this board. You have no idea what we have been through...you have no idea what it feels like to think your child is going to be a healthy baby and have them born with this disease. You have no idea what we go through on a daily basis and you have no idea what a person with Ichthyosis feels like. You don't feel my pain and my pain is not your pain...you don't know me and you don't no my family. You crossed the line with that statement and I will be the first to say it and I am sure others here certainly agree.
If you were really concerned as you said, then you would be satisfied with the fact that most people here are content with lotions, ointments, and modern medicine.
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#20369 - 07/30/05 11:48 AM Re: Board rules reminder
LauraAnn Offline
Member

Registered: 04/01/04
Posts: 220
Loc: Chicago, IL, USA
Yes!! I was actually going to suggest the same, that we all ignore the future posts and stop replying, it's just fueling his need to argue......we obviously aren't getting anywhere by saying our peace, he will continue to pull out something in our posts to shoot down or argue.......thanks for posting this.....I still wish we could block unwanted and argumentative postings from people who aren't struggling with this personally......
Laura
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*Laura
Mom to: Joshua (9yrs) and Matthew (4yrs) both affected with recessive x-linked ichthyosis

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#20370 - 07/30/05 01:05 PM Re: Board rules reminder
Nichiro Offline
Member

Registered: 07/19/05
Posts: 31
Loc: Detroit
Angel24755,Laura Ann

Yes, I did come across these two children 2 months back and it is a fact.

My daughter wedded in that family and they have two
children I mentioned.

My cousine is neighbour to them for over 40 years and they know the family so well.He also told me about this ICH problem.

My daughter's FIL and his brother who has these ICH children told me the story of suffering which was so painful to hear and see for myself.

Why should I want to fight ?
What do I get fighting with you all. Do I not understand what you all have gone through so far all these years?
If I can't understand that and feel the pain and suffering you have and are going through then I am not a human being.
I am preconditioned to feel other's pain and suffering as my own. Believe me or not but it is a fact.

You wrote that this board is a Heaven and I am turning it into chaotic hell.
So be it. There are certain things in life that cannot be changed . If you want to gloat in your pain , I have no objection. Only thing is I will feel that someone somewhere did not try something that would have helped.

But Truth can never be suppressed.If not today, tomorrow, when western world accepts orient's thinking in totality, your people will Patent even that.

Rest in peace .

Nichiro
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You'll get what you don't have.

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#20371 - 07/30/05 07:50 PM Re: Board rules reminder
Lisa for Jake Offline
Member

Registered: 04/26/01
Posts: 103
Loc: Manchester, England
i have a son with ichthyosis, from what i have read nichiro hasnt tried to "sell" anything, just tried to express what has worked for him,,,,,,,,,,,how can that be a bad thing? i personally dont fancy drinking my own pee or asking jake to drink his but i think if desperate u will try most things. How can u diss it if u never tried it? I have heard before that urine is good for the skin,,but it isnt something i would like to try,jakes doctor once told us to use a certain cream on his face,,,,,,, but it wasnt recommended unless he was over 12! i never used it, that isnt to say it wouldnt have worked, but i didnt want to use anything on him unless i knew it was okay,his doctor doesnt have ich nor does any of her children. IMO,,,,,and i am sure i will get some flack from this post,,,,,,but to be honest,,,,,i think that if someone wants to post what has worked for them should be welcomed,,,,not argued with,,,,,,and i dont think that nichiro came here to argue,,,,,,,,,,i think he came here to try and help, if u dont like his method, dont try it, but dont make out like he is a monster for trying to help...

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#20372 - 07/30/05 08:54 PM Re: Board rules reminder
ShaunaJ Offline
Member

Registered: 07/29/03
Posts: 233
Loc: Ogden,Utah
I think people are getting upset because he is saying to try it, when he doesn't even know what if anything it would do for somebody with Ich. He doesn't have Ich himself so even if it made his skin smoother there is no guarantee that it would have the same results with ichthyosis. Even though he says he knows people with ichthyosis they have not tried his AUT so he doesn't know or can't say for sure what it would do for ichthyosis. I think if he had ichthyosis and was using AUT to treat it and it gave him great results it would be a different story, but he doesn't. What I would worry about is infection. Ryley has lamellar ichthyosis and gets deep splits in her hands and feet. She is already at risk for infections. Wouldn't rubbing human waste cause an infection if it got down in the cracks?
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#20373 - 07/30/05 10:06 PM Re: Board rules reminder
immystique Offline
Member

Registered: 03/09/05
Posts: 271
Loc: Grand Junction, CO, USA
Please don't be encouraging him to come back!!! [img]http://www.ichthyosis.com/ubb/smile.gif[/img] He has it in his head that he's trying to help, and if it works for him-great. But for those of us who have no intention of trying it and frankly believe what he has to say is bull****, he for some reason is trying to "force" his beliefs on us w/o knowing what we go through.

Basically someone who is "just trying to help" would not be so damn pushy and take offense if someone said "thanks but no thanks".

For example, on the retinoids topic, you don't hear posters getting all huffy if they post something about a retinoid that works for them, then someone else says "Great, but beware of these side effects..." I guess it's just our great way of looking out for one another in this awesome community, and nichirio & edward apparently do not realize this.

And nichirio, please DO NOT reply to this message, I am through with you and your pissy attitude as I think most of us on this board are!
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#20374 - 07/30/05 10:24 PM Re: Board rules reminder
Nichiro Offline
Member

Registered: 07/19/05
Posts: 31
Loc: Detroit
immistique,
you wrote,
"And nichirio, please DO NOT reply to this message, I am through with you and your pissy attitude as I think most of us on this board are!"

Do you own this website ?
------------------------------------
Dear other friends,


I have no intention on posting anything on AUT. This is because most of you consider AUT as human waste. So be it.

Let me ask you one question how ever.
Since ICH causes a lot of drain on human body and immune system by trying to protect the skin and losing a lot of skin....

What sort of antioxidents and Natural medicines like FLAX SEEDS (Linseed seeds and Linseed oil )have you all used ?

Also how many of you has heard of KEFIR ?
Kefir is Fermented milk. (I hope it is accptable to you all).

Kefir tastes 99 percent like Yogurt and Linseeds have no bad taste at all. So children can not have aversion to its consumption.
This is another route to lessen pressure and strengthen overworked immune and body defence mechanism .

If you are all interested, you may visit KEFIR sites and FLAX SEEDS sites to know more.
Please remember, I am as concerned as you are. Take it or leave it.
Nichiro
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Use what you have
You'll get what you don't have.

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#20375 - 08/02/05 12:22 PM Re: Board rules reminder
Jr88 Offline
Member

Registered: 03/13/04
Posts: 36
Loc: Vancouver, BC, Canada
Nichiro
Have your relatives that have the son and daughter with ichthyosis tried AUT? Have you suggested it to them? I am curious to know what kind of ichthyosis they have, and whether AUT has worked for them. There is much to learn about medicines and cures, what works for some people and their disease may or not may work for others. This would be a great chance for us to examine AUT and Ichthyosis, if you have a first hand experience with your relatives.

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