Lets try to look at the big picture.
Question:
I am going to knock out milk in my tea now which is the only dairy i am
taking at the moment just to see what happens
I’d cut out the tea, too. :) Having long term bad p is like a chinese water torture, constant and draining. sticking to this diet i reckon is a bit like giving up smoking. it is so easy to do yet its also easy to have just one treat. which leads to another, etc etc. But ill try for now. Heres hoping.
You might be interested in more of my own experience with and thoughts about diet: http://members.aol.com/psorsite/docs/terry.html Best wishes, Terry — To send friendly e-mail, replace "nospam" with "ttowne1" and "emptymind" with "mindspring.
Response:
Reading your message below, I have now cut out dairy, wheat and lager. I am now concentrating on eating more of the stuff that doesnt come in boxes, tins or packages and spending more time in the fruit and vegetable part of the supermarket. I am eating bread made with rice flour and milk alternative soya, sweetened with fruit juice. I thought socialising would be the hardest thing to deal with, but I dont ask for lager any more, and just have a vodka and cranberry juice. After these little things, which really havent impacted on my life that much, I dont flake hals as much as I used to. And for the first time in a long time I keep looking at a patch on my arm which is now pink and smooth and not red, angry and flaking. It still looks like psoriasis, or patches of red skin, but less scaly, less flakes and more smooth. On certain parts, there are even little patches of clear skin coming through. My normal skin, eg skin with no lesions, is also looking much better, and ‘brighter’. The most recent patches to appear (on my hands) have nearly all gone. Whilst this is good news I would say that I am about 30-40% covered, and I am still 30-40% covered, although less flakey. I think this is a gradual recovery and the more pink my skin goes – the better – its going in the right direction!!!! I think I can do without wheat/gluten and milk for the rest of my life thanks very much. Hope this info helps. I will be keeping a food diary and will post again if I continue to clear. Its slow but the right direction!!
– Hide quoted text — Show quoted text – After a friend lost two stone on the atkins diet in a month i thought i would try a toned down version to trim up a little before a trip to the dead sea in October. my wife was the first to comment because i didnt dare believe it but my skin is actually improving without treatment for the first time ever. The biggest patches on and around my thighs are lightening from the inside out, likewise on my arms. the other places, calves belly back havent changed in appearance much but i think the scaling is less. I was really sore and struggling a month ago with the large patches on my upper legs burning and throbbing a lot and this is definitely different now. So far i think i have changed to covered but coping. I am going to knock out milk in my tea now which is the only dairy i am taking at the moment just to see what happens Having long term bad p is like a chinese water torture, constant and draining. sticking to this diet i reckon is a bit like giving up smoking. it is so easy to do yet its also easy to have just one treat. which leads to another, etc etc. But ill try for now. Heres hoping. How would you know if it was having an effect, chantge your diet and stop drinking for a while then you will know for sure.
Response:
How would you know if it was having an effect, chantge your diet and stop drinking for a while then you will know for sure.
Response:
After a friend lost two stone on the atkins diet in a month i thought i would try a toned down version to trim up a little before a trip to the dead sea in October. ten days ago i cut out all potato bread pasta and rice after a pretty standard (bad) diet and very bad p for over twenty years. I have used dithranol, puva, tigason and methotrexate over the years with the usual results. Recently I have been swearing not to take mtx again because of sickness feelings. Over the last few years the dead sea sun has been the most helpful and healthy for me. my wife was the first to comment because i didnt dare believe it but my skin is actually improving without treatment for the first time ever. The biggest patches on and around my thighs are lightening from the inside out, likewise on my arms. the other places, calves belly back havent changed in appearance much but i think the scaling is less. I was really sore and struggling a month ago with the large patches on my upper legs burning and throbbing a lot and this is definitely different now. So far i think i have changed to covered but coping. I am going to knock out milk in my tea now which is the only dairy i am taking at the moment just to see what happens Having long term bad p is like a chinese water torture, constant and draining. sticking to this diet i reckon is a bit like giving up smoking. it is so easy to do yet its also easy to have just one treat. which leads to another, etc etc. But ill try for now. Heres hoping.
– Hide quoted text — Show quoted text – How would you know if it was having an effect, chantge your diet and stop drinking for a while then you will know for sure.
Response:
[snip] When asked if diet had anything to do with it, my GP (who is an ‘expert’ in dermatology)…
Beer has no affect on my psoriasis, nor does any of the rest of my diet (which is bad I might add). The things that get my psoriasis going are, in this order: 1. viral infections 2. stress 3. Mystery influence #3 which I have yet to identify, but doesn’t seem too frequent or severe Beyond that, I tend to slowly heal. But inevitably, one of those things will come back and undo all the healing, then it will disappear and I slowly heal again. BTW: I’m only using vaseline and t-gel. Well, it *is*, for the most part, hereditary, and it is, for the majority of patients, exacerbated by stress. What annoys me about such statements is that they ignore many other things that psoriasis is. Such as the immunological aspects.
I think this is where the main cause lies. I believe there are several defective genes that, in the right combination, produce a screwed up immune system, which leads to psoriasis. The reason I believe this is because I can feel a connection between the state of my immune system and my psoriasis. Futhermore, one of my daughters is also having some interesting symptoms. She has psoriasis also, but she’s only had a small spot or two in her 7 years. She’s nearly always 100% clear for now. But she also developed Idiopathic Thrombocytal Purpura. Basically, her immune system freaked out one day and antibodies started attaching to her platelets, which her kidneys then filtered out. Instant hemophiliac in less than 24 hours. She woke up one day with two black eyes, covered in bruises and little red pinpoint spots. After some drugs and a week or so, she was back to normal. Very scary though. Everyone thought we beat her, we got some real insteresting looks at restaurants. The doctors at reily (where the cancer children go in indiana) described it as an over active immune system which is how my P was described in the past. So it would seem that mysterious immune system ailments run in my family. Ironically, I used to have an incredible immune system. I could heal cuts in three days. And I was almost never sick. Now, it’s more normal, but when the family gets sick (4 kids), I’m always the last one to get it and it’s the least severe for me. I would love to see a multi-country research programme (in which I mean tracking the history of psoriatics), which would result in a database of information of a few hundred thousand psoriasis sufferers. Wouldn’t we all?
I bet this already exists. And once such a database is in existance, it’s a relativly small step to spot patterns in the available data. I’d like to spend an hour with that data writing half a dozen SQL queries with agregate functions just to see what comes back. But I bet it’s more complicated than that. The fact that different people respond to different treatments makes me think that there’s a lot more going on. Maybe psoriasis is really six different diseases, all with the same outward symptom. And that’s exactly the reason the above studies were done. People saw correlations, and decided to collect some data to attempt to show that they were, indeed, correlations. Of *course* psoriatics are "made of similar stuff" to some extent. Obviously, if I had yellow skin instead of red, I’d have jaundice and not psoriasis.
Or you’d be asian instead of apache. :-) sorry I couldn’t resist. brian
Response:
Paul
[snip] At least if the results turned
out that there is no – Hide quoted text — Show quoted text -correlation, that, tough shit, you have psoriasis, its incurable and hereditary and you’re f*cked, at least I could deal with it, rather than the agonising HOPE, the daily grind of an overworked brain trying to figure it out. Honestly, Paul: quit trying. Realize that they’re are dedicated people out there who research psoriasis (and psoriasis alone) for a living. They don’t make any money treating you day in and day out, and a string of research failures will get them sacked. They’ve got more psoriasis knowledge than this whole newsgroup put together. Let them try
to figure it out. It’s what they’re paid – by *us*, through taxes, donations
to the NPF, purchases of prescription drugs, and the like – to do. Give
yourself a break and let them do the agonizing. They do, you know. Your own
agonizing isn’t helping them (they don’t know you), and it sure isn’t helping you. So, let me say: live your life as if psoriasis were never to be cured. Find the best method for you of alleviating the symptoms, and move on
to something else for which your agonizing might be more productive.
An excellent post, Dave. To which I would add only one thing (Paul, please don’t think I’m unsympathetic to your feelings): live your life as if psoriasis were never to be cured and as if you don’t have psoriasis (i.e, you "control" it, it doesn’t control you). Will W.
Response:
For some reason my newsfeed didn’t pick up the original post, so I’m responding to Dave’s response -which did appear- even though I’m really responding to the original poster: I would love to see a multi-country research programme (in which I mean tracking the history of psoriatics), which would result in a database of information of a few hundred thousand psoriasis sufferers.
[...] I would like to see the NPF tackle something like this, via newsgroups like this, as a very quick way of spreading the questionnaire, putting it on their website, distributing it through Psoriasis Associations in the US, Europe, Asia Pacific etc. Its not something that Joe Bloggs (or John Doe in the US) could tackle.
Well no, but why dump responsibility on the NPF for it, especially given that you see it as a worldwide study and that’s a national org. Such a project run by organizational beaurocracies not set up for that specific purpose would likely be hugely expensive and I’m not so sure I want a significant chunk of the NPF’s limited funds pulled from things such as lobbying, providing information and funding primary research projects to fund such a thing. Especially not in the format you suggest using things such as ng without any real way to verify responses where relevant or to block things such as ballot stuffing, making the results of quesitonable value at best. Oh, and Joe Bloggs or John Doe or Paul whomever certainly could do it if they wanted to put the time and resources into it. So could the NIH or the WHO. [...] I think it may show that us psoriasis sufferers are made of similar stuff and that some common themes could be gleaned from the information – which may point us in the right direction in terms of the cause of P.
It never fails to boggle my mind that so many people keep proposing this sort of thing as if it’s a new concept that no one else has ever considered. particularly by those evil conspiricist conventional med community members. The NPF actually has done surveys on its members looking for correlations and similarities. As to others, try the following link to a MEDLINE search for a start on what’s being/been done: http://pinch.com/skinny?medline=psoriasis+demographics It seems to be pretty clear, especially given the results from the new targeted antibody therapies in trial that they are already pointed in the right direction, just haven’t fully mapped the course. Sorry, I seem to be on a mixed metaphor binge lately. http://pinch.com/skinny?medline=psoriasis+cause At least if the results turned out that there is no correlation, that, tough shit, you have psoriasis, its incurable and hereditary and you’re f*cked
That’s hardly a necessary either/or, BTW. There coulod be correlations other than those you’ve selected to survey. Or another way of bridging the apparent conflict is a growing belief that psoriasis is actually a group of diseases under a single heading. Which may some day end up tying to the multiple genetic markers that are being identified so that the markers you have help determine your likely disease path and affiliated treatment. And which group of correlations you will likely be part of. And may answer why nothing works for everyone, including why targeted antibodies with different targets can still have significant successes in treating P. Although another part of the latter may simply lie in the diversity of the autoimmune system itself opening multiple possible channels. I would love to put the effort in myself, but I have smaller fish to fry. I hope some big cheese at the NPF will read this… [...] …and understand the value of information and comparing/constrasting the history of psoriasis patients.
Which I guess is why I’m responding at all because this bit kind of got under my skin. The implications that they don’t already understand the value of those things seems pretty much a cheap shot given their existing efforts at addressing both concerns. While if you’d love to put the effort in but are too busy, you might at least send them a direct message rather than simply hope they read a usenet message. Kim The Psoriasis Newsgroup Resource FAQ can be found at http://pfaq.cjb.net but will also be coming soon (twice a month) to a newsgroup near you…
Response:
[snip] I know for an absolute fact (100%) that my skin gets worse the day after drinking beer. Beer is made from wheat.
Most beers are made with barley. Wheat beers are made with wheat in addition to barley. However, if you’re looking at this from a gluten-intolerance point-of-view, barley contains gluten, it’s a relative of wheat. So is rye. [snip] When asked if diet had anything to do with it, my GP (who is an ‘expert’ in dermatology)…
Very few GPs are experts in anything. That’s why they’re called *general* practitioners. Jacks-of-all-diseases, and expert in none, if you’ll allow me to butcher the old saying. After showing my GP the Internet research I’d done before my appointment, he said, "you probably know more about psoriasis than I do." …dismissed the suggestion immediately and said ‘Its hereditary, and it’s excaerbated by the hard living of today and stress’. For a disease, the cause of which is unknown, to be classified like this annoys me.
Well, it *is*, for the most part, hereditary, and it is, for the majority of patients, exacerbated by stress. What annoys me about such statements is that they ignore many other things that psoriasis is. Such as the immunological aspects. There are a number of previously untreatable diseases which are now completely curable through years of medical research. At the moment, psoriasis is something that doctors are merely ‘managing’, and symptom alleviation appears to be the main driving force.
Absolutely. Very few practicing doctors have time to do research. Those that do are usually at hospitals and/or universities. The medical research that has cured those other previously-uncurable diseases was done largely by microbiologists, chemists, geneticists, etc., along with a host of poorly paid summer interns who spent their mind-numbing days grinding up rat livers or picking up the prima-donna PhD’s dry cleaning (grin). Yes, the practicing doctors merely manage psoriasis, because that’s all that’s available right now. They are poorly-equipped to do otherwise, they don’t have the resources of a university or a pharmaceutical company. I would love to see a multi-country research programme (in which I mean tracking the history of psoriatics), which would result in a database of information of a few hundred thousand psoriasis sufferers.
Wouldn’t we all? I would like to see the questions in the research programme tackling…
Smaller studies have already been done on some of these: …age of onset…
http://www.pinch.com/skinny?medline=86034815 …how long suffered…
Don’t know of anything offhand, but it seems to me that it would depend solely on age-of-onset and age-at-present, right? …use of antibiotics…
Prior to psoriasis, I take it? Antibiotics are sometimes successful at driving psoriasis into remission. …family disease history…
http://www3.ncbi.nlm.nih.gov/htbin-post/Omim/dispmim?177900 …use of steroids…
Again, I take it you mean *before* psoriasis, right? …family stability…
Here’s one on anger management: http://www.medscape.com/IMNG/ClinPsychNews/1997/v25.n10/cpn2510.15.1…. …alcohol and tobacco consumption…
Lots of studies on these. Here’s one that looked at both: http://www.pinch.com/skinny?medline=89348665 [snip] I would like to see the NPF tackle something like this, via newsgroups like this, as a very quick way of spreading the questionnaire, putting it on their website, distributing it through Psoriasis Associations in the US, Europe, Asia Pacific etc. Its not something that Joe Bloggs (or John Doe in the US) could tackle.
Perhaps not. But perhaps one particular Joe should write directly to the NPF with the idea? [hint, hint] I think it may show that us psoriasis sufferers are made of similar stuff and that some common themes could be gleaned from the information – which may point us in the right direction in terms of the cause of P.
And that’s exactly the reason the above studies were done. People saw correlations, and decided to collect some data to attempt to show that they were, indeed, correlations. Of *course* psoriatics are "made of similar stuff" to some extent. Obviously, if I had yellow skin instead of red, I’d have jaundice and not psoriasis. Coupled with the fact that the currently- available therapies work for most (not all, but most) psoriatics mean that most of us have quite a bit in common. Lets face it, we wander from one idea to the next, spending god knows how much money, ever-hopeful of bio-tech wondercure, with no purposeful direction.
Is that a problem with the current state of psoriasis research, or with the current state of the average psoriatic? If you’re talking about the research, it is neither wandering nor lacking a purposeful direction. It’s fairly-well focused on two fronts: understanding the genetics of the disease in order to develop treatments that target the root of the problem; and trying to find treatments that alleviate the symptoms *really well* until the first group figures the disease out completely. If, however, you’re talking about the patients, that’s a problem that only good education in critical thinking can solve. In America, especially, there’s a trend towards believing in "alternatives" which can lead to a wandering from treatment idea to treatment idea – for *any* disease, not just psoriasis. It’s a sad state of affairs, brought about by at least three factors in my opinion: A) A general lack of any sort of mandatory "consumer education" classes in grade school which would teach kids at an early age how to spot "iffy" get-rich-quick schemes or medical therapies (among other things a consumer needs to be able to identify and ignore). A basic understanding of the workings of a "scam" (whether intended as such by those perpetrating it or not) would go a long way towards saving people a ton of money. B) Lack of funding to enforcement organizations like the Federal Trade Commission or the Food and Drug Administration, which are mandated to protect the consumer from people who treat diseases without any sort of solid evidence that the treatment works (of course, if point A were implemented, law enforcement groups would have less of a job to do). C) A public largely ignorant of medical science, and what it claims to be able to do. A bunch of people I’ve "met" here, for example, appear to think that mainstream doctors ought to be able to "cure" them of psoriasis. When the psoriasis comes back, they tend to become violently opposed to all mainstream medicine, and accuse all doctors of being "quacks," when instead the problem more likely resides in an unreasonable expectation on the patient’s part. Oh, which brings to mind… D) A whole lot of doctors who appear to think that they’re doing the patients a favor by seeing them at all. A good doctor-patient relationship appears, to me, at least, to be historically abnormal, with doctors being elevated to divinity and patients begging to be healed. This is a horrid state of affairs, and needs to be stopped right now. HMOs and the like aren’t helping matters, because they make it more cost-effective for doctors to be fast and glib, like your GP, Paul. At least if the results turned out that there is no correlation, that, tough shit, you have psoriasis, its incurable and hereditary and you’re f*cked, at least I could deal with it, rather than the agonising HOPE, the daily grind of an overworked brain trying to figure it out.
Honestly, Paul: quit trying. Realize that they’re are dedicated people out there who research psoriasis (and psoriasis alone) for a living. They don’t make any money treating you day in and day out, and a string of research failures will get them sacked. They’ve got more psoriasis knowledge than this whole newsgroup put together. Let them try to figure it out. It’s what they’re paid – by *us*, through taxes, donations to the NPF, purchases of prescription drugs, and the like – to do. Give yourself a break and let them do the agonizing. They do, you know. Your own agonizing isn’t helping them (they don’t know you), and it sure isn’t helping you. So, let me say: live your life as if psoriasis were never to be cured. Find the best method for you of alleviating the symptoms, and move on to something else for which your agonizing might be more productive. I would love to put the effort in myself, but I have smaller fish to fry. I hope some big cheese at the NPF will read this…
http://www.psoriasis.org/j000.htm …and understand the value of information and comparing/constrasting the history of psoriasis patients.
You’re kidding, right? Who knows, results could be that 97% of psoriasis sufferers flare after consuming wheat.
See http://www.pinch.com/skinny?medline=94114393 and http://www.pinch.com/skinny?medline=20117412 [snip] – Dave W. http://members.aol.com/psorsite/
Response:
I am pretty much convinced that after my 15 years or so with psoriasis that it has something to do with my stomach and intestines. My father was diagnosed 6 years ago with late-onset diabetes, something that his diet caused. The only person other than me in my family (that I know of) to have psoriasis is my cousin. I have tried most of the usual things for psoriasis. I not only suffer from psoriasis, but I also notice that I have sluggish bowel movements, sometimes dark stools, sometimes diarrhea, lots of stomach grumbling (really at its worst after eating mayonnaise). It is hard for me to put a finger on it, but after fifteen years you tend to know your body and its reactions and get a general feel as to the problem. What I am suggesting is that there may be a hereditary defect in some people to be allergic to certain foods/proteins, whether this is gluten, wheat, dairy (gluten intolerance can lead to dairy intolerance) or whatever. I know for an absolute fact (100%) that my skin gets worse the day after drinking beer. Beer is made from wheat. If I eat bread its not such a bad reaction, but I can tell. Now, a while ago, I made a concerted effort to change my diet to mainly rice, vegetables and fruit. I remember that my lesions started clearing from the middle outwards, and left a kind of ‘ring’, with clear skin in the middle. Why I never continued with the diet I’ll never know. I am about to have a blood test at my local hospital as a pre-cursor to a course of MTX. I have the form on my table. Before I do this, however, I want to be 100% sure and am having both a gluten allegy test AND a candida test performed – for my own peace of mind. When asked if diet had anything to do with it, my GP (who is an ‘expert’ in dermatology) dismissed the suggestion immediately and said ‘Its hereditary, and it’s excaerbated by the hard living of today and stress’. For a disease, the cause of which is unknown, to be classified like this annoys me. There are a number of previously untreatable diseases which are now completely curable through years of medical research. At the moment, psoriasis is something that doctors are merely ‘managing’, and symptom alleviation appears to be the main driving force. I would love to see a multi-country research programme (in which I mean tracking the history of psoriatics), which would result in a database of information of a few hundred thousand psoriasis sufferers. I would like to see the questions in the research programme tackling age of onset, how long suffered, use of antibiotics, typical diet, family disease history, use of steroids, family stability, alcohol and tobacco consumption, trigger foods, lifestyle, type of job (with stress factor), expenditure on medications, description of stools (YES), how often passed, digestive problems, dairy and wheat consumption, fruit and vegetable consumption, etc etc . All this data could be whacked into a computer with a large brain to spew out some correlations. I would be very interested to see the results. I would like to see the NPF tackle something like this, via newsgroups like this, as a very quick way of spreading the questionnaire, putting it on their website, distributing it through Psoriasis Associations in the US, Europe, Asia Pacific etc. Its not something that Joe Bloggs (or John Doe in the US) could tackle. I think it may show that us psoriasis sufferers are made of similar stuff and that some common themes could be gleaned from the information – which may point us in the right direction in terms of the cause of P. Lets face it, we wander from one idea to the next, spending god knows how much money, ever-hopeful of bio-tech wondercure, with no purposeful direction. At least if the results turned out that there is no correlation, that, tough shit, you have psoriasis, its incurable and hereditary and you’re f*cked, at least I could deal with it, rather than the agonising HOPE, the daily grind of an overworked brain trying to figure it out. I would love to put the effort in myself, but I have smaller fish to fry. I hope some big cheese at the NPF will read this and understand the value of information and comparing/constrasting the history of psoriasis patients. Who knows, results could be that 97% of psoriasis sufferers flare after consuming wheat. Results could be that of all the attempts to achieve clearing from psoriasis remission, the most successful regime is dietary (with no rebounds). Could be that the answer is out there and we havent been looking for it. Enough visioning from me, I’m off to suppress my symptoms. Paul
Response:
Filed under: Lobbying
Leave a Comment
XHTML: You can use these tags: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>
TrackBack URL | RSS feed for comments on this post.