Must P Reading! Psoriasis Hall of PShame

[nesielheum]

Psoriasis Hall of PShame (http://www.pinch.com/skin/pshame.html)
is a must read for everyone with this disease, and although the website Psoriasis Hall of PShame (http://www.pinch.com/skin/pshame.html) has not been updated in recent months, the information is as appropriate today as it was when it was first published to the web.
Psoriasis Hall of PShame (http://www.pinch.com/skin/pshame.html)

is a highly recommended site for seasoned veterans and newbies to psoriasis. Those treatments, books, etc. that have earned the honor, or more appropriately dis-honor of being listed on the Psoriasis Hall of PShame (http://www.pinch.com/skin/pshame.html) are the worst of the worst scams and marketing ploys psoriatics are faced with on a seemingly never ending basis.
The following is an excerpt concerning one of the more mis-leading books that comes complete with a mis-leading promise of a "cure."
Lisa Levan's book -The Psoriasis Cure

Problems even before the book is out. The author has put up a web site at www.psoriasiscure.net (http://web.archive.org/web/19991116102633/www.psoriasiscure.net/) with a preview (http://web.archive.org/web/19991116170729/www.psoriasiscure.net/bookinfo.htm) of the preface (http://web.archive.org/web/19991006103834/www.psoriasiscure.net/preface.htm) and conclusion (http://web.archive.org/web/19991116190219/www.psoriasiscure.net/conclus.htm). The two look nearly identical, being a tirade against the toxicity of traditional medicine, the incompetence of doctors, and repeated hype (three times in one paragraph) of her qualifications as a researcher and former psoriasis sufferer. Here's a sample of the misinformation being proffered:

You may have experienced unpleasant and even dangerous side effects from taking artificial prescription drugs. These effects on your body are called "contraindications" by pharmaceutical firms to lessen your repulsion to them and fear of taking the drug. Look at the long list of scary things that can happen to you on the drug package insert on the medicine you are now taking.

Pharmaceutical companies actually call the side effects "adverse reactions" on their "scare sheets". Contraindications are known preexisting conditions that might rule out the use of a particular drug. The list of adverse reactions and potential drug interactions is lengthy because every reaction during the testing trials is listed, whether known to be caused by the drug or not. Many of the reactions would have occurred regardless of the drug. This is a small but important point, and it shows the lack of any critical review taken in publishing this book. Each statement of a scientific basis for the claims calls for more skepticism.

To present any dietary suggestions as a cure is extremely misleading. The author may have had personal success, but psoriasis is a very individual disease. What works for one person does nothing for the next. In the global psoriasis support group, folks have been having some success with diet and vitamins, but many of the author's specific recommendations have been tried and dismissed years ago as hype and scams. The author has already begun hawking her book in the support groups, where the consensus is that no promotion is allowed.

The publisher was alerted to some of these problems in fall of '98, when the site first appeared. The book may well be a disservice to the millions of people who have this incurable disease.

Review posted to Barnes and Noble 4/26/99

June 2001: The site is gone, and the domain name grabbed by a cybersquatter.
Sept 2003: The site has been taken over by a new PsoriaisisCure scammer.
Thank you Ed Anderson for this comprehensive look into the shameful side of psoriasis treatments and publications.

[Geffy]

OMG, Nesielheum, THANK YOU!

These books and whatnot has caused me more emotional trauma in my life with P and PA than ANYTHING else! PERIOD!

The pain can be bad, the P ugly, but explaining to people what the disease is and have them NOT believe me because of these "Cure" books is heartbreaking! I have had so many converstations with people that have thought I was the ignorant one and ill informed because they meerly SAW a book that had the word CURE on it in the bookstore. I have even tried the logic with them that if there was an easy CURE I would have found it in the last 16 years from these books! And if there was a cure, why would a book need to be written. PSA's would be the way to go.

I gives the general public the view that I am LAZY, DIRTY, and UNHEALTHY to be around because I didn't do something so easy. The younger I was, the less credibility I had.

I wish for everyones sake they would AT LEAST write these books as ways TO MANAGE one's P / PA. Not CURE

It makes me soooooo angry that I don't even like it when people use the word cure for "cureing a headache" You can't cure a headache and you can't cure P yet. Polio was cured, one can get a vaccine against it!

I am very angry right now, but I will get over it. It just brought up a load of especially childhood emotions. I could spit fire at every person who thought I was lazy.

However, thank you again Nesielheum for posting and Ed for writing it in the first place.

Holly

[grannyfranny]

I am not cured but,,,if I had listened to my derm and all the meds he likes to prescribe,,,,,I would still be in a wheelchair and very, very depressed or maybe even dead!

He offered me Enbrel and MTX even after that awful infection I had!

This is not to say that meds don't work,,,,they just don't work for some people and others need to know about other things.

[GitOverIt]

Hey Gran I agree there! if it hadn't been for Dr Pagano's title "healing Psoriasis" I would still be back where I was!
At the time I was on Pagano's diet and treatment plan I also had ordered Lisa Levan's book....I followed much of her recommendations for supplements and still do! and Dr. Pagano's diet and great tips for soothing P.

It's true...what works for one doesn't work for all....

but if you don't try it you'll never know.....there are too many people that have been helped!

all I can say is if you don't want to follow a medical procedure of drugs! then where do you go? For me it was the alternative route! :p

I'm so thankful I did!

[Geffy]

That's why I would absolutley LOVE for books to read "manage" and not "cure". Granny you are managing it and well. I am happy for you. That's what we all are doing, managing. Some books are so bogus it's not even funny and others not. The average joe on the street can't tell the difference. They are all about management.

I wish there was some way to get a campaign or something off the ground to petition the government or powers that be JUST to get the word cure off of things that aren't curable at the moment. I don't mean just P, but any other disease too. I don't know how to do that. I could look into it or I'd sign up if someone has something like this in the works.

I really am happy for you Granny, if it works use it! My beef is with the false hope part of it and the public miseducation. Because what it boils down to is that it "may help" not "will cure"

Holly

[grannyfranny]

Holly,
We can't change the name of a book or what is put on it,,,,what we can do is read with an open mind. Not listen to non-believers say about nutrition and supplements. We have to try things for ourselves.

Sure, doctors know a lot but,,,,,,,,,,,,we had two doctors for a dinner party last night. They were a husband/wife couple. We were talking about our kids and college. They said they encouraged ther kids to be derms because there is never an emergency in dermatology!!!!!!! Remind me never to go to either of them!

I don't have Lisa's book but I do have Pagano's and Phillis A. Balch's book on Nutritional Healing. I read and study and take from them what I can and I don't agree with everything they write. The biggest answer for me was eliminating processed foods. Our foods are so full of chemicals that most of us have no idea what we are eating.

I hope you find something that helps you.

[wildflowerAnn]

Well said GrannyFranny. Especially to the newly diagnosed, never read anything with your eyes wide shut.

[Geffy]

Holly,
We can't change the name of a book or what is put on it,,,,what we can do is read with an open mind. Not listen to non-believers say about nutrition and supplements. We have to try things for ourselves.

Sure, doctors know a lot but,,,,,,,,,,,,we had two doctors for a dinner party last night. They were a husband/wife couple. We were talking about our kids and college. They said they encouraged ther kids to be derms because there is never an emergency in dermatology!!!!!!! Remind me never to go to either of them!

I don't have Lisa's book but I do have Pagano's and Phillis A. Balch's book on Nutritional Healing. I read and study and take from them what I can and I don't agree with everything they write. The biggest answer for me was eliminating processed foods. Our foods are so full of chemicals that most of us have no idea what we are eating.

I hope you find something that helps you.

I know you can for radio and TV. There is the FTC. There have been labels put on CD's about explicit lyrics, etc. Food having to have proper labeling. I didn't like it when someone would put natural on something when it wasn't. Now the way they trick the people not paying attention is to have the name of the product read natural. They are not saying it is natural anymore, just the name. Why? because they are not allowed.

I'm not sure about other things. It is just an idea. Books I have no idea.

Holly

[grannyfranny]

I don't think I want to tackle the FTC or FDA about proper labeling.

I just say,,,Consumer-Beware!!!!! Decide for yourself.

In the meantime,,,check the labeling on foods to see what the FDA allows in food. :eek: :eek:

[Geffy]

In the meantime,,,check the labeling on foods to see what the FDA allows in food. :eek: :eek:

I won't agrue with you there.

Holly

[Dulane]

Neiselheum's post just says that Lisa Levan's publisher's were alerted to concerns...not that the author's dietary suggestions were unhealthy or might not help some individuals.

Lisa also shared concerns/fears that many of us have regarding corticosteroids and strong chemicals that can affect our health and organs in years to come. Read the small print in the pharmaceutical documentation.

I don't fear carrots and plums and broccoli.

Her book is still sold and advocated in holistic communities. And I love hearing success stories from previous psoriasis sufferers.

OK....next book to review?

[Paco386]

Thanks Neiselheum for posting such a comprehensive site ... prove useful to the newbies unfamiliar with the pscams out there. I was reading some of the stuff on that site, and there were some products I had never heard of before ... but the psoriasiscure.net story was a riot :D

[nesielheum]

Yes Paco and Geffy et. al.
Ed A's Pshame website is as important now as it was whan it was first published to the web. It is important that we all remain skeptically curious when individuals and charlatan marketeers try to infer that science and western medicine are our enemies when reasonable minds are well aware that these two disciplines are our best hope for an improved future regarding our mission to find a cure for psoriasis.

[Jor-EL]

Newbies to psoriasis an/or this forum-- The person that is quick to discredit the book mentioned in his first post, most likely never even opened the cover to that book and I'm certain he never followed the treatment for even a day. Have you Tim ? Tell the truth.

Besides that, nesielheum's post is merely a copy/paste of a review of one person's personal opinion of the book. I'm sure the reviewer never followed the treatment for any length of time either.

Take it from someone who did. I read the book cover to cover and followed the treatment for 7 or 8 months at which point my psoriasis was completely gone. That was more than 2 years ago and it has not returned since. Not a single drug or light treatment in all that time. Beyond that I feel healthier than I did prior to getting psoriasis and I also have experienced other improvements with the quality of my skin (no more dandruff or "ashy" shins are two of them). Also, I am not in a constant fear that my health will be harmed by a lifelong treatment of consuming potentially dangerous drugs. Those were fringe benefits I never counted on. Ask nesielheum about his fringe benefits.

So who ya gonna believe? You be the judge.

[ouchyk]

Thanks Neiselheum for posting such a comprehensive site ... prove useful to the newbies unfamiliar with the pscams out there. I was reading some of the stuff on that site, and there were some products I had never heard of before ... but the psoriasiscure.net story was a riot :D


It is pretty extensive.

I'm going to read that story right now, laughter is good medicine! :D


Karen

[Alesis]

Thank you, Tim for taking the time to put this together!

A.

[JKNY]

for saying so simply what I have been trying to say in my long winded manner.

Be skeptical of doctors too....easily....just get a second opinion and bounce it off the board here.

[itchyscratchie]

Hey Tim, Is Ed a buddy of yours? This seems like a big promotion http://www.psoriasis.org/forum/images/icons/icon3.gif

[PJ Leary]

Not to discount the success of many here who have found diet to be a key issue in maintaining skin health, but so many more have not found that to be the case.

Personally, I am pleased to be a friend of Ed A. He has long been a dedicated and intelligent advocate for psoriasis patients around the globe.

I honestly can't remember the last time I read anything from Ed A that I disagreed with.

[GitOverIt]

I do not know Ed A so have no opinion whatsoever about him :D

I do know that when I first got P I started searching everywhere on the web for answers....maybe much like the majority here did!?
I came across the hall of pshame and started reading it....the more I read the more depressed I became....I quickly left that site (and never went back) I found it too negative for me....maybe others gained something from it....Not me!

To tell you the truth I do not know if Dr. Pagano is on the list or not...I'm assuming Lisa Levan's book is on the list from the conversation going on.....

All I can say is thank you..... to my instincts, guardian angel, higher power, whatever....that led me to something that cleared me.....

Their regimen isn't for everyone...for one thing it isn't easy giving up all the comfort foods and drinks required by their recommendations.....maybe that is why some, that tried the plan, have failed to get relief ....I admit it isn't easy....but once you have been on it you notice a feeling of well-being. And you want to stay on this way of eating.....

If you read about any of the auto-immune diseases (inflammatory diseases) many will have specific diet plans! (diabetes, heart, atherosclerosis, high cholesterol etc)
That is what these two books are advising....a health plan! Now whether you want to follow it is something only each individual can decide!

Jor-el did and he has been clear for 2 years I think that is great! That is all the endorsement I need to hear....that it worked!

[chennai01]

I wonder why "diet" is used so loosely? Diets differ significantly? Are we talking about an Atkins diet? Are we talking about "the I think I'm eating healthy" diet? A general anti-inflammatory diet with low amounts of Omega 6 and high amounts of Omege 3 fatty acids? A detailed diet of avoiding specific food allergies that required an integrative physician to help identify,etc.?

Its like saying I failed "drugs" because an iburprofen didn't stop my PA.

A dietary approach is very tough and has many different variations to use and will often may take a good amount of time. Most diets such as these may be too difficult for many folks to do.

[ouchyk]

I read the site last night.

Its an incredible resource. Ton's of good valid information about scams, heavens knows how hard we try not to fall victim to such rubbish. I can't believe all the crap thats out there!

Great job done on the site, such a shame he doesn't keep up with it any longer....I could point him to some new scams! geesh! I would imagine that in this day and age it would be difficult to keep up seeing that there is a cure a day.... :rolleyes:


Bookmarked!

Karen

[makeitgoaway]

That is what these two books are advising....a health plan! Now whether you want to follow it is something only each individual can decide!

If that is all it is, why title the book, "The Psoriasis Cure"?

When I see anything like that, my snake oil salesperson radar goes on high alert.

[GitOverIt]

That will get more attention than "The Maybe Psoriasis Cure" :D

[wildflowerAnn]

Karen, I agree that we don't want to waste time or money on products that do not help the health of our skin or joints. I think Dulane has an excellent post in the Lisa Levan book thread, that clearly states those of us with severe, recalcitrant psoriasis will need meds. The book isn't meant for people whose psoriasis is so aggressive that it stumps even the finest dermatologists, and breaks through the most powerful available medications. The Mayo Clinic states on its site that for most people, psoriasis is an annoyance, and many forms resolve into remission. The author of this book was able to clear her skin; and so were several members following the guidance. Hey, if a member is a candidate for putting this to rest once and for all, why knock it?
I don't care what the title reads. Its the steps in it that have helped members get in remission that counts. Doesn't sound pshameful to me.

[RichJ]

hi tim,
great thread. im glad to have meet you in person and you are a very smart man. im glad enbrel has helped you were alot of other things didn't. we all know that one thing works for one don't meant it works for all.

have a good night my friend

richard

[ouchyk]

Karen, I agree that we don't want to waste time or money on products that do not help the health of our skin or joints. I think Dulane has an excellent post in the Lisa Levan book thread, that clearly states those of us with severe, recalcitrant psoriasis will need meds. The book isn't meant for people whose psoriasis is so aggressive that it stumps even the finest dermatologists, and breaks through the most powerful available medications. The Mayo Clinic states on its site that for most people, psoriasis is an annoyance, and many forms resolve into remission. The author of this book was able to clear her skin; and so were several members following the guidance. Hey, if a member is a candidate for putting this to rest once and for all, why knock it?
I don't care what the title reads. Its the steps in it that have helped members get in remission that counts. Doesn't sound pshameful to me.

Ann,

Lisa Levan states no where in her book that I can recall that her method is meant for those who do not have recalcitrant p or pa.

I read the book, I posted my review I gave it a two thumbs down. Doesn't mean that someone else might have a different point of view after reading it. I have an opinion, what can I say?

I give the P hall of shame a two thumbs up, I'd give it three thumbs only...I use a shampoo that they wrote about...used it tonight as a matter of fact.

Karen

[nesielheum]

Bumping for the newbies and the oldies. :)
The original link to the Psoriasis >>> Hall of PShame (http://www.pinch.com/skin/pshame.html)

Happy reading keep informed! :)

[alli]

Tim,
Thanks for reminding me of that website. Although the material is still relevant today, I wish Ed A would add some updates. It seems the explosion of the use of the internet has created a new generation of people preying on psoriatics.

Alli

[1stloved]

Karen,

What is the shampoo and did you like it? I'm having a rough (LOL) time of it right now with my scalp.

Janet

[ouchyk]

Janet,

It's called Lupi-care psoriasis shampoo. The active ingredient is salicylic acid 2%. www.lupicare.com They have other products as well, but I didnt have the need for them. I use it once a week.

It leaves my hair soft & shiny. Doesn't smell too bad either... :)

I promise I'm not a stakeholder in this product, I don't sell services or products lol....I just like it.

You could try calling or emailing and asking for a sample. Lot's of companies are good about freebies, that way you could try it without commiting to purchasing.

Karen :)

[nesielheum]

Janet,

It's called Lupi-care psoriasis shampoo. The active ingredient is salicylic acid 2%. www.lupicare.com They have other products as well, but I didnt have the need for them. I use it once a week.

It leaves my hair soft & shiny. Doesn't smell too bad either... :)

I promise I'm not a stakeholder in this product, I don't sell services or products lol....I just like it.

You could try calling or emailing and asking for a sample. Lot's of companies are good about freebies, that way you could try it without commiting to purchasing.

Karen :) :) A few of the products listed on the PShame website (http://www.pinch.com/skin/pshame.html) are there not because they are bad, or useless, but because of the marketing approach used in introducing, or hyping these products to consumers. The addition of salicylic acid sometime in 2000 to the :rolleyes: "naturally-based" :rolleyes: lupicare products is what gives it a kick for psoriatics.

Active Ingredient: Salicylic Acid 2.0%.
Inactive Ingredients: Water, Hydroxypropyl Methylcellulose, Sodium Laureth Sulfate, Ammonium Laureth Sulfate, Cocamidopropyl Betaine, PEG-75 Lanolin, Trimethylsilylamodimethicone, Methylchloroisothiazolinone & Methylisothiazolinone, Fragrance. :eek:

The PShame site also lists this product of at the time selling for $8US/oz the products currently appear to be selling for just under $2US/oz for the shampoo and less than $4US/oz for the cremes. So it sounds like consumers are paying less for a product with a bonafide active ingredient... That in some small way can be considered a good thing. :)

[ouchyk]

I understand lol. Far from all-natural!! Gotta love marketing. See it all the time not only in products but in services!

I got it for free ;) grabbed a few bottles at the conference last year in Boston.

Good reason to go to the conference ! :p

I would definately ask for a free sample and see if you like it, works for me.

Karen :)

[1stloved]

Thanks Karen. What a great idea. I never would have thought of that.

[nesielheum]

I understand lol. Far from all-natural!! Gotta love marketing. See it all the time not only in products but in services!

I got it for free ;) grabbed a few bottles at the conference last year in Boston.

Good reason to go to the conference ! :p

I would definately ask for a free sample and see if you like it, works for me.

Karen :) :) Most derms are also a good source for free samples of otc products. I usually walk out of the office with a couple of moisturizer samples to try, but I always manage to go back to eucerin "original" :o .