3Posted Tue 12 Feb 2019 09.35 by OhNo_NotAgain? (edited Tue 12 Feb 2019 09.38 by OhNo_NotAgain?)
pdr321: " When you are testing a new potential treatment, it is never a good idea to combine it with an existing one, because if you do get better you don't now which treatment has worked for you"
Who says it is never a good idea? you? based on what? In what medical/physical way is it not a good idea?
Many people on here are looking for improvement in their condition, not necessarily a wanting a study on the effectiveness of one particular course of action. Most people would not care which treatment worked, if their condition has improved.
I think many people who try dietry changes, eg cutting out dairy, red meat, gluten, adding bluberries or supplements such as vitamind to their diet, are not going to want to take the time to make one cnange and then monitor the results before trying another, and for the general public I do not see why they should.
I can see no reason to advise against continuing a steroid or other beneficial treatment until the immediate symptoms are lessened, UNLESS someone can point to a valid study that shows negative interactions.
Hi,
pdr321 , OhNo_NotAgain?
I do not think anyone can be dogmatic on the subject of how you should apply treatments for psoriasis as everyone is VERY individual and it is therefore understandable that the 'experts' are often at a loss.
It is known (as far as it is possible to 'know' anything) that psoriasis is a dysfunction/aberration of the autoimmune system.
It is known that gut bacteria plays a part in this dysfunction/aberration and that this may be due to the lack of beneficial bacterial versus detrimental bacteria.
It is known that either a proliferation of or over reaction to both bacteria and fungi cause the clinical symptoms of P.
So, starting with 'food as medicine':
It is also known that the food we eat today (unless you grow your own or use farmers markets), for a multitude of reasons does not contain the nutrients of a few decades ago. It makes sense therefore to seek the best food we can or supplements to see what makes a difference. With regard to blueberries: it is known that they contain high levels of antioxidants which help with disease as you age (clearly this is simplistic and the actions of such antioxidants is complex - google this if you are interested), With regard to the use or avoidance of certain foods this will depend on the individual and only by experimenting can you find out what benefits you.
Steroids and other treatments:
If someone is suffering to such an extent and steroids give relief - it would not be anyone's decision except theirs to use them. Provided they get the right advice and use them appropriately it is possible to achieve reduction of P symptoms. From a personal perspective I hate the idea of steroids, but then I only have mild - moderate P and apart from my scalp (pretty much all over) it only sometimes appears on small areas elsewhere. If I had it very bad I may well be inclined to use steroids.
Ointments/creams/lotions:
My thoughts: start with natural options
If unsuccessful move onto the mildest pharmaceutical options.
(google or look on these forums for all options).
After all the aim is to be able to live your life without constant itching and feeling down.
Vitamins:
You should have your levels of vitamin D checked most definitely - research vitamin deficiency implications in P and discuss with your Doctor as to any other supplement you may benefit from (ideal if you can get it from food but this is not always possible). This is a study that used high dose D3 and achieved amazing results in P : https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3897595/
Mixing treatments:
The experts have not (and likely never will) found an ideal treatment.
Remember we are trying to balance bacteria and fungi (after all we actually
benefit from having some level of these). Mixing treatments means that neither bacteria or fungi will have the chance to build resistance. A successful example of this method when used for ringworm (a fungus) it is common practice to mix medications both oral and topical.
Personally I would always go with dietary and other natural topical approaches on the understanding that this approach will not be a fast fix as you are addressing possibly life long bad eating and lifestyle habits. It is my hope that by doing this I will effect long term good control if not a cure.
4Posted Tue 12 Feb 2019 19.58 by pdr321 A long sufferer of plaque psoriasis who found an effective treatment after 27 years (blueberries). I have now been clear more than 5 years.
People that read this forum can make their own minds up, as indeed they should do. The beauty of this treatment is that you don't need to use any medication, this is what I really wanted to get over to sufferers. It has been such a wonderful outcome for me and also many others on this forum. I have described my personal experience, I hope it continues to help others, enough said - you decide.
How petty. I am understanding why Wendy left this forum. My post was not at all confrontational.
11Posted Tue 12 Feb 2019 21.08 by pdr321 A long sufferer of plaque psoriasis who found an effective treatment after 27 years (blueberries). I have now been clear more than 5 years.
Jeanette, I understand that you are only trying to be helpful, OhNo_NotAgain's post was not made in the same spirit. Probably time for the Association to edit this forum I think!
Thank you for that pdr321,
Think I will take Wendy's lead though. Will keep an eye on the forum to see if there is more positive action by the Association to moderate the forum - shame that this appears to be needed. I was sorry to see Wendy go as she was open minded both to current research and natural approaches all based on her own personal experience and knowledge. While with no official science background I do tend to research as well as I can (very time consuming) in order to give as balanced an opinion as possible across the scientific research, other's experience as well as my own. Science itself is becoming more open to mixed treatment approaches despite the fact that medical practice tends to be around 15 years behind known beneficial approaches (in all arenas). So it would be more helpful for forum users to have contributors who avoid being dogmatic - and most tend not to be. Apples and barrels come to mind. Good luck to you all in your battle with P and be kind to yourselves.
Hello all,
It's my first post on here. I have Psoriasis and psoriatic arthritis. Have been on methotrexate which worked but came off it when I read the side effects. I'm now trying the natural route.
I have recently cut out refined sugars and nightshade and started to use Kefir (home made). I'm really excited to hear of the successes with blueberries!! I have started on them this morning and pray i get some results. I'll post weekly with any results.
Many thanks
Cal
jeanette50: the reason I was not at all interested in your post - which you addressed speciifically to me and one other user, and not simply a general forum post , is that it was not anything to do with the immediate subject being debated.
That of course was one user saying that someone with very uncomfortable plaque psoriasis must not use topical steroid treatment that could give temporary relief, while starting to eat bluberries to seek relief that way.
I was not opposing the use of blueberries and so had no appetite to read another long post about the gut and diet, I have read and digested much of what has already been written on that topic many times over.
As for why the user "Wendy" left the forum . . .People are free to decide what they wish to do, but I found it strange that they would delete all their existing posts.
Remember, on a forum such as this we have no idea who anyone really is, we only see screen-names and what people write in posts.
I was critical of that user shortly after they joined, when they diagnosed some user from symptoms that they were worried about . . ."you have a gall bladder problem . or. .it is your liver". I still think it is somewhat irresponsible to attempt specific diagnosis of health issues via a forum such as this, and I said so.
In later posts I saw that user tell one person that there is no link between gluten and psoriasis, and in another post to tell someone to cut out gluten.
A few weeks before leaving they replied to a post that had received no reply for some time and user "wendy" replied saying ( as accurately I recall) . ." I do not know anything about this, but I will answer anyway . . . . .I am a bit of a know-it-all on this site . . . . . " there was then some information cut directly from wikipedia.
Shortly after that, they criticised another user for posting in more than one thread and instructed them not to do so (that user was none too pleased and said so).
Then in a post that I felt I had to reply to, they replied to a post apparently from a university student requesting participation in a survey, and "wendy" stated that the website address given was a scam site, was nothing to do with eduction or universities, and was used to distribute dodgy software. This was completely false information, and I have no idea from where it was gleaned.
Initially "Wendy" said that they would no longer post in reply to appraent scams.
Then followed a post saying that they were leaving the site and removing all their previous posts.
Rememnbering that nobody really knows who anyone is on here, they then decided that I am a man, and attacked me for being " a man who has an opinion about pregancy". That totally puzzled me.
Perhaps people can sometimes become too emotionally invested in a forum such as this, and it can be a good thing to take a break for a while.
Can't believe what's happening on here!! We're all supposed to be healing. Let's stick to the blueberries and be nice.
4Posted Sat 16 Feb 2019 14.21 by Summer (edited Sat 16 Feb 2019 14.22 by Summer)
I agree cal
I always open up notifications, just to read everyone’s stories and Journey , it’s great to here what works for someone and not for others,
We all need to get back on track in supporting & helping one another
Hope no one finds this Offensive
Best wishes to all.
Hi cal
I eat blueberries everyday, I have for a year or two, since reading they may help with P. I just doubled the amount, Iv been diagnosed with psoriatic arthritis, consultant put me on methotrexate, this came on so quick, I had a lot of swelling in fingers and pain, been on the poison 4 weeks, my joints and pain have seen a massive improvement,
I will have to see what consultant says next visit, don’t like taking it, I will have to see.
I have seen improvement in P, since eating blueberries, I will always eat them, they are so good for you,
It looks like it works for some, not for all.
Keep eating the berries I hope you will get good results be patient ,
All the best.
I buy 350 gram x 3. Every week.
Have them with my porridge, and just pick.
Posted Sat 16 Feb 2019 19.50 by Cal
Summer,
I have PA and P also. Had P for about 30 years and PA for the last 6 years.
Recently cut out refined sugars and gone on the berries so hopefully things will turn around.
Best wishes to you too
Keep up the good work
Hi everybody , I think the same this Forum is for BLUEBERRIES only some succeed, some don’t and we are kind for the ones who don’t have success, I can’t read all the scientific Mumbo Jumbo I want the Forum to get back to the remarkable benefits of Blueberries that’s what this was for and give friends support. and advise, please stop all this and get back to the Blueberry only, if people want to talk about DIET AND IMMUNE SYSTEM OPEN A DIFFERENT FORUM WHERE YOU CAN DISCUSS IT TO YOUR HEARTS CONTENT, please leave us alone to concentrate on PHIL’S BLUEBERRY FORUM.
Chrissie NW
Hi everyone, first time poster.
I'm a guy in my late 30's and I stumbled accross this forum 4 hrs ago and have since read every post on this thread. I have to thank you all for sharing your blueberry success stories, they have today given me hope.
I have suffered with inverse genital phorasis for 6 years and more recently scalp phorasis also. (has anyone who suffered with inverse phorasis had blueberry success?)
I was misdiagnosed by my GP for the first year who prescribed numerous anti-fungals for "persistent reoccurring genital fungal infections." This obviously had little to no effect and I doubted her diagnosis as I'm a pretty clean person. I eventually paid £100's to see a private consultant dermatologist, who immediately told me I had inverse genital phorasis and scalp phorasis. He wrote to my GP and made them aware of their misdiagnosis and told them to prescribe Dovobet, Dovonex, Capasal as well as a few moisturisers and Bath emollient.
For a few years this has worked, but for the last 2 years or so the effectiveness of the medication has declined. I am now so desperate for some relief from the pain. I've grown my hair long enough to hide the legions and scabs, (I used to be in the military and have always had shaved hair.) my groin and genitals are now so bad they look badly burnt with open weaping sores in my skin folds. My partner is very understanding and supportive, but this has destroyed our love life for a couple of years now. It's now got so painful that washing is virtually unbearable.
I really hope Sir Phil's magic blueberries work as well for me, as they have for so many of you. I'm off out to buy my first few punnets.
Thanks all
Jon
Posted Sun 17 Feb 2019 11.23 by Flake
Hey Jon,
Yeah I’ve got a bit of that around the old family jewels and in the groin and buttock creases, my Mrs is understanding too and I have a home made ointment which helps so much it’s barely an issue (as long as I apply the ointment once or twice a week).
As far as blueberries are concerned it’s early days yet for me I’ve been eating them a couple of months, with some breaks which resulted in some gnarley flare ups. So they do work, but for some more than others it seems. I’ll keep eating them, as they are delicious and do reduce inflammation for my psoriatic arthritis and reduce the buildup on my plaque psoriasis.
A bit off topic, but that ointment recipe if interested:
Organic coconut oil
Grapefruit seed extract (liquid form, just a few drops)
Few small pieces of beeswax
Cannabis oil (50:50 THC:CBD)
Ratios aren’t too important, the cannabis oil and grapefruit seed extract is where the magic is, the other 2 ingredients are just carriers and help with moisturising.
Keep eating blueberries and see how they work for you, good luck!
Posted Sun 17 Feb 2019 11.39 by Jon81 (edited Sun 17 Feb 2019 11.54 by Jon81)
Hey Flake
Thanks for that. I'm up for trying anything at the moment, it's that bad. Don't want to offend anyone with too much info, but for a few months being 'excited' is the scariest thing I've ever had to cope with. Brings tears to my eyes.
My mum takes very expensive canabis oil, I'll see if can pinch some of hers and try that recipe out.
Definately going to hit the blueberries for a month or two in the hope of some relief. It's such an embarrassing and depressing disease to cope with.
Thanks again
Jon
I have tried eating "anti inflammatory" foods, like berries, Flax seeds, chia seeds, turmeric tea and KALE. My psoriasis has not completely gone and there is still redness but no scaling and some psoriasis is fading, an oddly my birthmark has faded. Even if this stuff is just a placebo, it still dosen't harm you
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