PPP or Pustular Psoriasis - A Chronicle

[Nick]

Hey there PB

This makes great reading

I've been trying to source a hybrid Dernatologist (dermatologically trained) / Homeopath/Naturopath but haven't managed to track one down yet. Possibly Dermatology is so narrow a field that none of them have yet made a career change from Dermo to Naturo/Homeo

I'll keep searching though, maybe there's a CV (Resumé) out there that fits the search

[PaulBeck]

Hey Nick...
Yeah... I'm having a hard time too.  Frustrating.  I'm making so much progress alone.  If I could just get the right doc on board I'm confident it would go so much faster with proffesional oversight.  I'll be posting a progress report within the next week.  I want to make sure I'm not premature in my evaluation.   As you may have noticed in a response to jamiedalton2's intro posting, I was actually able to stamp my feet without pain for the first time in over a year.  Something good is happening for sure.  I just need to understand why a little better.  It could simply be the constant dietary tweaking - eliminating a little of this and adding a little of that.  The more I study, the more I realize how TOXIC we've made our little blue sphere.  I'm convinced that detoxification, even agressive detoxification is the key.
In addition to seeking out the right doc I'll be pursuing additional detox regimens to eliminate pcb's, dioxin, metals and heavy metals.  There are a number of good protocols out there, several of which are easily self-administered and quite comfortable as I understand it.  A search on the Townsend letter and some of the information provided by other SC members has been very useful in pursuing detox strategies.  Glad you're enjoying my posts.  I'm certainly enjoyin the forum!
K

[PaulBeck]

*****   PaulBeck FINDS AN 'INTEGRATED' PHYSICIAN!  YEE HA!   *****
My quest for MD's who incorporates naturopathy and homeopathy into their practice has yielded the name of doctor right in the town where I work.  He's affiliated with the local hospital (I'm assuming for the moment that he's got privileges there) and comes highly recommended.  He might also be covered under my insurance plan!  That would be nice, but at this point I'll pay out of my own pocket if I have to.  I get check with the insurance company Monday morning to see if he's on the approved providers list.  I'll keep you posted!
K

[PaulBeck]

*****   BRIEF NOTES ON CURRENT OBSERVATIONS   *****
I've noticed since I've been on the new protocol(s) I no longer have dry eyes at all.  That used to be a perpetual problem, especially when I first wake up.  Hmmm... yet another beneficial side effect.  Good!

It is approaching three weeks now that my PPP has been in a calm phase.  Never has the calm phase lasted more than a day or two before, and often it was only a matter of hours - literally.  Regarding my level of comfort in case you missed this bit of information in my reply post to jamiedalton2 on December 16th, here is an (edited) excerpt:

<snip>
My PPP does NOT constantly flare up.  It used to.  When I'd use steroids or other prescription topicals - Olux foam; which is a VERY strong form of clobetasol, Tazarac or Dovonex.<snip>
Right now - knocking on wood - my feet have been calm for over two weeks and I haven't even needed any moisturizers, which I used to apply several times a day.
Any flare ups I've had recently have been mild and short-lived and are usually due to being so comfortable that I over exert my self; like shoveling snow for 2 or 3 hours, etc.
I don't have any PPP on my hands any more AT ALL! I have not had a single pustule on them for over 6 months. Even during a bad flare up on my feet, I get very few pustules - maybe 10-15 total. I never did pustules under my fingernails, but I would get several sometimes on the heels of my hands, between fingers and on fleshy areas of the thumbs.
I'm CERTAIN my PPP is improving gradually & slowly DUE ENTIRELY TO DIETARY CONSIDERATIONS. I fully expect at some point that it will just give up completely and I'll win the battle.
Yesterday, at work, I came in from the parking lot and stamped the snow off my feet on the catchall carpet runner. I did this almost automatically, but FOR THE FIRST TIME IN A YEAR I did NOT get a nasty reminder that I've got a painful problem in my feet! I was so excited; I jumped up, a little at first, and SLAMMED my feet to the floor, eventually with great force. NOTHING! NO PAIN! N-O-T-H-I-N-G ! So I did it a few more times just be sure. Then of course, I fully expected my feet to be in complete tatters and misery today (Dec. 16th) . GUESS WHAT ? N-O-T-H-I-N-G ! My feet are completely fine and comfortable today. I NEVER achieved anywhere near this level of comfort with solutions - pills, ointments, prescriptions, etc. - provided by the 'conventional wisdom' of the Western medical professionals. With all due respect to doctors and nurses, who could save your life under the right circumstances, NOTHING they've prescribed has worked AT ALL! I'll be DAMNED if I'll ever look in that direction FIRST, ever again. I suffered with failed remedies and misdiagnoses for A SOLID YEAR, then made INCREDIBLE progress in just two short months with ALL NATURAL FOOD PRODUCTS and very close scrutiny of EVERYTHING that goes into my body. Truly, the DETOXIFICATION SICKNESS that comes and goes in various forms and strengths is a very small price to pay for the ability to WALK PAIN-FREE.
Jamie... you're so much younger than I am to be plagued with such a horrible skin problem and a case that is apparently much more severe than mine. I urge you to think about reading everything you can get your hands on regarding treatment of leaky gut syndrome, the relationship between your bowels and skin, (the immune system and your skin Ed.), detoxification for not only 'bad' gut bacteria, but metals, heavy metals, dioxin and pcb's. We are all exposed to these things in huge amounts here in the U.S., and more so in the Eastern states, where I am. Give it some thought. You, Val and other sufferers will be on my mind every step of the way, and hopefully I'll triumph and be able to share with you all. I had NO CHOICE but to turn away from the solutions of medicine, when I approached the point where my options were approaching totally illogical choices, like choosing between foot comfort and my liver or kidneys being damaged by rather strong poisons. I Just couldn't go there unless I had absolutely no other options. If my case were so bad that I had to consider such things as Methotrexate, etc. I would likely have done it and started a nutrition protocol IMMEDIATELY and CONCURRENTLY so that I could look forward to a day when I no longer had to make that choice.
<snip>

Except for minor irritation from socks rubbing, my feet remain calm.  No massive flare ups, accompanied by huge groups of pustules, cracking, etc.  An isolated inflamed spot, a few new singular pustules and that's about it.  Some areas are almost beginning to look like normal skin again for at least part of the day.

Discovered a new soap today that I find comforting; French Mandarin Olive Oil soap - hypoallergenic, by Olivia Care (oliviacare.com).  Christmas clearance priced at a nearby outlet store, elsewise quite beyond what I'd normally pay for even fancy bar soap.  But... it smells INCREDIBLY GOOD and is very, very mild on my feet and doesn't seem to dry them out like many other soaps can.

More later.  Can't wait to check in with the new doctor!  I hope he's accepting patients just now.

Good Golly!  I've gotta start using spell and grammar check all the time!  The previous post was a pathetic mess!
Later!
K

[jamiedalton2]

At one point I was able to not take systemic medications..at first my PPP was moderate, I was able to try to limit lots of foods, try vitamins, used 2 certain soaps that weren't soap..I forget what they were called but you can buy them in the baby section at a grocery store by the baby shampoos etc....oh one was cetaphil...can't remember the other but think it started with an A, well anyway I was able to manage the first 6 months or so without medications when it first came on..nothing I was doing seemed to help as it did get worse so I went on to make those very depressing decisions.  I'm so glad you dont' have it as bad as me, I don't want anyone to have to go through this and I hate that any of you have to, the only thing that benefits me from you all having it is someone to share the misery with, but I would rather you all just not to have it, I would rather be alone with it because it is miserable to wear your own skin.  Sometimes I tell my husband I've been cursed!  That a witch put a curse on a family member of mine along time ago!!!!  Gives me a laugh!  Not intended to mean harm to any wiccas on the board, I do have wicca friends...even had them try to heal me!!!!!  Well have a good day everyone, and keep up the research, this whole section right here amazes me, I've done research but nothing compared to this and I don't think my brain is big enough to memorize all the different variable options to treat the PPP with or without medications...  I research, I have learned alot, but never the less I forget some of it or don't keep up on it, it's so nice to stop by here and see how it is all going without meds and I hope it works out for you.  Jamie D

[PaulBeck]

*****  SETBACK PART I  *****
Unfortunately, as many of us know only too well, stress can cause a flare up.
I lost a lifelong friend a few days before Christmas.  One part of my obligations was to clean out his apartment and move all of his belongings and the furniture.  Needless to say, this was a bit tough on my feet.

I resorted to taking a single dose of Aleve and a quick smear of Tazorac.  This brought my PPP back under control IMMEDIATELY!  That actually impressed me as a significant sign of improvement in my condition.  Consider that in the past it would take weeks or months of using various internal and topical drugs to accomplish the same result.  Not all that bad I'd say.

*****  SETBACK PART II  *****
My digital camera had to be sent to Kodak for repair, so the pix I had hoped to post on or about 12/26 will be a little delayed.

In case some of you didn't read my response to kajeza on the ...Introduce... board, you may want to hyperhop over there for a couple of useful links.
http://www.skincell.org/yabbse/index.php?board=1;action=display;threadid=5466;view=all

Later then, all.  Enjoy robust health and peace in the New Year!
K

[Shadowmaiden]

Paul-
What is the FYI? and where can it be purchased. I suffer from TMD (tempero mandibular disorder) and have recently stopped taking advil for fear of building a tolerance, in addition to other crappy things it does to the bod. I use kava generally for inflamed tissues and joints- but am looking for an alternate to switch off with. Thanks!
Shadowmaiden

Oh and by the way, the Twin Lab Yeast Fighters is helping my intestines fight alll the bad yeasts and fungus away, I feel amazingly energetic, and clean (if that is a valid feeling!)
Be Well!

[PaulBeck]

Hey Shadowmaiden...
The FYI (For Your Inflammation) is a Garden of Life product containing natural products to help fight inflammation.  The best prices I've found for it online are at iHerb.com.  Here's the link:
http://www.iherb.com/gardenaz.html
It can be found in all the natural food stores in my area, but they charge almost double (full retail) the best online price.

I don't mean to sound argumentative ( re: my warning to you regarding echinacea ),  but I'd be remiss if I didn't mention this:
Kava has been outlawed in many countries because of it's link to fatal liver problems.  And, as you're probably already aware, long term use of ibuprofen is rather tough on the kidneys.
Supposedly the FYI gets to the root causes of inflammation and has 'properly sourced' ingredients making it a superior formulation.  I can't say how effective it is alone, though I'm confident that it likely will be, as it's only a part of the supplement protocol I've chosen.  I hope you'll find it a good alternative to help with your TMD.
Regards,
K

[Shadowmaiden]

HEY Paul and Val!!  Where do I score me some witch hazel gel???!!I want to try!!! (I'm such a baby!, I have to have it all)

Shadowmaiden

[Shadowmaiden]

Paul,
Thank for the link, I'm definitely going to try the FYI. Oh yeah, I'm fully aware of the whole Kava conspiracy. I ascertain particular measures while taking it (standardized dose of kalvactones per day from a reputable manufacturer, I do not drink any alcoholic beverages at least 2 days prior or 2 days post kava use, and I limit the period of time I use it) Over the years I have come to respect many herbs, as well as prescribed medications. And moreso, the whole ibuprofen thing is incredibly scary to me. At one point during a TMD flareup, I was literally going through bottles of it, like it were Pez candy. It was like, I would literally do anything, (ANYTHING, YOU HEAR ME?!) I thought would take the painful, swelling, aching, palpitating jaw,ear and neck trauma away. I have since then gone through a healing process, and only take the Advil when I have bad swelling or the jaw gets inflamed or locked. I am going to start taking Gingko again though, (I took a break from it to avoid non-tolerance) it helped me kick the advil craze a year ago, and I only use a pain killer like Aleve when I have legitimate pain. Thanks again!
Shadowmaiden

[PaulBeck]

Shadowmaiden...
I find your replies most enlightening.  I wish had more time to acquire knowledge about herbals as I still use them from time to time, and some of the supplements I use contain them I think.
Let me know what you think of the FYI.  As I mentioned before I've never been able to evaluate it alone because it would disrupt my protocol.

Regarding kava...
I suppose there's always a small risk of death if any herbal is abused, and a small population that will abuse it.  Whether by carelessness, design, stupidity or ignorance some will always be harmed by using substances inappropriately or by ingesting things that they shouldn't.  Perhaps this is the case with kava, though I'm aware it must be taken in HUGE quantities - approximately one pound per week - to cause serious problems.
Ginko is pretty cool stuff, and I used it in the past - not that you asked - for about one year when I was administering a very busy computer network.  I stopped taking it only when I found that other products improved my mental clarity and ability to focus, better than the Ginko.  I know there are some contraindications clearly stated on the labels of many brands.
I've also recently come across a rather informative book, "Delmar's Integrative Herb Guide For Nurses".  It has a great deal of information regarding interactions of herbs with other substances.  Regarding Kava, it has a few interesting things to say regarding skin.  In general, it could interfere with cholesterol metabolism necessary for normal keratinocyte formation, leading to reversible scaly skin eruptions.
Also, kavalactone extract may CAUSE inflammation of the body thereby potentially defeating the FYI.

Oy!  The list of stuff I try to avoid seems endless.  At times the battle itself seems hopeless as just about everything I want to use to some benefit may have a caveat regarding either immune system function, allergic reactions involving the skin (rash, eczema, etc.), outright skin reaction or interaction with something equally beneficial that I'm already using.
Best To You!
Be well, safe and happy!
K

[Fishs]

 

M   Kava ..

having a great deal  knowledge and so on of fiji and papua . I am well aware of this stuff .

I am also very well aquainted with the Thursday Islanders and Torries Strait Islamders up in The Nt and Northern Queensland etc ..

I have seen first hand just what this stuff can do ..
Not wishing to debunk anyone  but I have investigated this stuff thoroughly ..

As for medical properties ..About minus zero ..

Even in small doses infrequently this stuff damages brain cells ..

Echinacea .. You need to understand exactly what this does and what this herb is all about ..

I have done a lot of work with it and also been involved with various manufacturing  using it  re doing some prep and formulation work .

The benefits are Minimal and no it is pretty useless for skin conditions .

There are also two types .Purpurea and augustafolia ..

They are different one is distilled from the leaf  and the other extracted from the deep root ..Their uses are quite different .

I will come back to this one ..

Fish

[parrot lover]

Hi,
I am a sufferer like yourself, mine are both hands and feet, i get driven round the bend,with visits to a skin specilist, but anm interested in what works for you

[parrot lover]

Hi,Im Parrot lover,Peased to meet anyone,with the same complaint as me.
both my hands and feet are effected, Please tell me without medication how on earth do you stiop the burning sensation

[peterb]

  parrot lover

Welcome to skincell.  I am a Psoriasis sufferer and get plaque Psoriasis on my hands.  Some of our other PPP sufferer's will give you some advice when they come online.  Have look through Skin Conditions and Helpful Remedies there is a lot of info on PPP of hands and feet.

 

[parrot lover]

HI PETERB,
Thanks, I will check it out.
I am fed up of taking drugs,besides it addles my brain.
I have been asked to attend a therapy group for pustular psoriasis, I dont know whether talk will do it for me,but hey i will give it a go .

[PaulBeck]

Parrot Lover!
As Peter and many of us reiterate from time to time, what works for some may or may not work for others.  Several SkinCell members - Val, JamieDalton2, others... - have PPP and can also inform you of what works for them.
In my reply postings to JamieDalton2, I pointed out that the turning point for me occured after being on my present protocol for several weeks.  I went through a period of detoxification illness that lasted about 10-14 days.  This is, I found out later, an expected consequence of this type of stringent protocol, and may be expected with other protocols too.  After the 'detox flu' subsided, for the first time in some 16 months, MY FEET STOPPED HURTING and I have been able to walk in comfort since then.  It was getting so bad, to which other PPP sufferers will attest I'm sure, that I was becoming genuinely concerned as to how much longer I'd actually be able to walk.  The cracking and bleeding stopped, the pustules became fewer and fewer to a point where now I only get one once in a great while.  The redness and plaques continue are helped by intermittent use of a retinoid - Tazorac (Rx).  The spreading has ceased and it seems to be staying within its original margins.  Overall, I'd rate my 'success' thus far as about a 60% improvement, subjectively; about a 90% improvement in comfort, about a 30% improvement in appearance.
Everything I'm doing is listed here in the PPP Chronicle, but I'd consider the following items the most important in my improvement:
Primal Defense
RM-10
NO SUGAR
NO BREAD
There are many other changes I've made and things I'm constantly tweaking that I'll address soon in this thread.  Just now I've got the burden of uninvited responsibilities to bear that take me away from participating in the forum as much as I'd like.  But... I didn't want to leave you wondering for too long.
I'm convinced that I'm on the right road to my personal 'cure', if there is such a thing.  I've made dramatic improvement in a short time.  I'm hopeful that it will continue.
More info later.
Be Well!
K

[Shadowmaiden]

Hey Fish- Paul- Peter,
Yes the kava thing is a touchy subject, and echinacea is so media pumped, people don't realize that it literally can do more harm than good. I actually think I am allergic to it ( I can grow them, but don't ask me to drink it in a tea!)
I agree w/Paul that the carbs slow you down, your metabolism, your lifestyle. Almost 7 years ago, I went on a high protein diet, (I will reiterate Paul's statement,"I am not an Atkins advocate") and successfully lost 80 lbs. I have since then waivered 10 lbs up, 10 lbs down- In the last year, I let my old eating habits intervene in my almost completely healthy living lifestyle. (I have one very very very very very bad habit- I smoke-do you think I know it's very bad?! I'am trying to sell my soul to satan in exchange to quit) I exercise daily, eat veggies, fruits, nuts, protein, avoid sugar, carbs, soda, caffeine and anything I believe to be "synthetic". For me the low carb thing works- I cut out bread, pasta, and rice- and I can lose weight quick. Some however, need even a small amount of carbs to help them burn off the fat, so what's good for the goose is not necessarily good for the gander (so to speak). I cannot lie though, I love sweets and tasty treats, and butter and cream sauces, and such- but once the holidays are over, veggies and meat lead the way. (That is of course until Easter!)  Be Well all!
Shadowmaiden

  even my teeth are grateful when I take a sugar break!!!

[parrot lover]

HI Paul Beck,Good to meet you.
If you find a cure give it to me,I take nearly 30 pills a day,It is killing me.
I have been told nothing more can be done,Do you have the Arthritis that goes with pustular psoriasis,I have shoes from the disabled people,cause my bones hurt,I also found out today that it could help to damage eyesight,other than diabetes,of course,of which i have.How many doctors? a cartload.

[PaulBeck]

Hey parrot...
The 'cure' I'm experiencing - just noteworthy progress at this point - is detailed throughout the *3P Chronicle here.  It may or may not work for you.  I do NOT the arthritis that you state accompanies the pustular P.  I wasn't aware of any such association.  I do have a very badly damaged knee that has little cartilage left in it from years of surfing, raquetball, tennis and running.  It was so bad in the past that I'd have to wrap it in wool at night and elevate my flexed leg with a pillow at the back of my knee, just to get it to calm down enough so I could sleep.  Now, it doesn't bother me at all unless I'm carrying a heavy load and twist it to just the right angle.
Are you saying that the *3P or the Psoriatic Arthritis can damage your eyesight?  Again I'd refer you to my notation in the PPP Chronicle where I mentioned that I'd noticed a discernable improvement in contrast, color saturation and visual acuity, but NO improvement in my mild astigmatism.
I'm told that none of the supplemental products I take would do anything more than help stabilize blood sugar.  It's likely the diabetes that you were refering to, which can rob you of your sight in time.
Of course, particularly if you're already under a doctor's care and/or are taking insulin for your condition, CONSULT YOUR PHYSICIAN BEFORE MODIFYING ANYTHING YOU'RE CURRENTLY DOING.  I'm NOT qualified to dispense advice in any way, shape or form (except on other subjects) and my experiences are my own, my evidence is both a photographic record and the anecdotal writings in the PPP Chronicle.
I'm sure there are MANY products and methods you can use to help your condition.  My entire course of action - for ME - is based on a single postulate derived from much experience and research in tweaking my diet over a number of years.  The theory is that controlling the health of your gut, controls the health of EVERYTHING ELSE.  So far, IT'S WORKING - er... for ME, in case I haven't said that enough.  The best we can hope to do here in the forum is offer our remedies and solutions for comparison, and do no harm in the process.  I have benefited in many ways in the forum, reading the writings, research and experiences of others and picking out the little nuggets that apply to my situation.  I truly hope you'll find a few nuggets while pawing through the boards, that will help you with your situation.
Best Wishes!
K