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Hello from CrowFriend

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Hello from CrowFriend
CrowFriend Offline
Newbie


Posts: 4
Threads: 2
Joined: Aug 2017
Gender: Female
Location: Pacific Northwest, USA
Treatment: Diet (basically Auto-Immune Paleo, at the moment tapering on to LDN
#1
Sat-19-08-2017, 18:31 PM
Hi, I'm happy to see if this is a place that will be supportive and helpful. I was on Inspire before it was Inspire and after, and I really got discouraged with the snarkiness factor. 
I've had psoriasis since my late 20s, in my mid 50s now. I also have other autoimmune conditions like interstitial cystitis and what I thought was Hashimotos thyroidosis, but that just got challenged by a new ND who said she thought it wasn't, that I had hypothroidism for sure but not Hashis. Lately (menopause, death of beloved pet, depressing state of nation/world) the guttate has gotten worse and worse. Because I was treating primarily with diet and supplements, I was starting to blame myself for not dialing in the diet and supplements adequately.
I recently (two weeks ago) used a topical corticosteriod. I will post a question about that in another thread. I also started LDN.  My new ND is going to test for Strept, which she says is correlated with Guttate P. Also viral load, also she suspects Lyme disease! So I guess I'm starting a new phase of my healing journey. 
Thanks for reading!
Turnedlight Offline
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 6,104
Threads: 62
Joined: Apr 2015
Gender: Female
Location: Uk
Treatment: Skyrizi
#2
Sat-19-08-2017, 19:35 PM
Hi nice to meet you Wave

So, what does ND stand for? Sounds like they might be good if they are checking you out for all sorts.
Caroline Offline
You must hurry if you ever want to catch a chicken...
*
Forum Helper
Posts: 26,501
Threads: 113
Joined: Nov 2011
Gender: Female
Location: In between the tulips
Psoriasis Score: 3
Psoriatic Arthritis Score: 3
PQOLS: 4
Treatment: Got back to DMF slow release
#3
Sat-19-08-2017, 19:46 PM
Hi Crowfriend,

Nice to meet you too!
Welcome to psoriasisclub

Eh, Can you explain to me want a snarkiness factor is?  Smile

You seen to have quite a lot of auto immune trouble. Smart that they are going to check on Strept. It certainly is been researched that there is a link between Psoriasis, auto immune diseases as a whole, to be connected to bacterial residues. Lyme is in that same corner.
A scientist, called Lida Mattman has done a lot of reseach in that direction, that might be important to know for your doc.

Have a good time over here with us .

Caroline
CrowFriend Offline Author
Newbie


Posts: 4
Threads: 2
Joined: Aug 2017
Gender: Female
Location: Pacific Northwest, USA
Treatment: Diet (basically Auto-Immune Paleo, at the moment tapering on to LDN
#4
Sat-19-08-2017, 20:05 PM
Thank you for the welcome! ND is NaturoPathic Doctor - sorry to be confusing!
Snarkiness is another word for being unkind or, in the case of that forum Insight, even belligerent.  There were also plenty of kind people there, but the unkind ones made it unattractive.
I will research Lida Mattman. My new ND is involved in research of biophages for treatment of viral things. So in the case, a biophage targeted at the Strept. I'm getting tested for Strept and other viral things next week. 
Cheers!
Fred Offline
I Wanted To Change the World But Got Up Far Too Late.
Moderator
Posts: 66,918
Threads: 3,887
Joined: Aug 2011
Gender: Male
Location: France
Psoriatic Arthritis Score: 1
PQOLS: 1
Treatment: Bimzelx / Coconut Oil
#5
Sat-19-08-2017, 20:14 PM
Hello CrowFriend  Welcome to Psoriasis Club.

I'm sure you will find us both supportive and helpful. You will find that we do all have different opinions, but we do have respect for each other. If you ever feel any member is "Snarky" toward you please let me know or contact a Staff and we will look into it for you. We want all our members to be happy and we like a pleasant atmosphere.

Regards.

Fred.

@Caroline I class "snarkiness" as being insulting or to mock another in an unfriendly way. (Not to be confused with friendly banter between friends) I think it has the same or similar meaning in the USA, but it's not a nice thing to do to a person and not something we want here.  NoNo

Edit: I see CrowFriend has explained.
Caroline Offline
You must hurry if you ever want to catch a chicken...
*
Forum Helper
Posts: 26,501
Threads: 113
Joined: Nov 2011
Gender: Female
Location: In between the tulips
Psoriasis Score: 3
Psoriatic Arthritis Score: 3
PQOLS: 4
Treatment: Got back to DMF slow release
#6
Sat-19-08-2017, 20:17 PM
(Sat-19-08-2017, 20:05 PM)CrowFriend Wrote: Thank you for the welcome! ND is NaturoPathic Doctor - sorry to be confusing!
Snarkiness is another word for being unkind or, in the case of that forum Insight, even belligerent.  There were also plenty of kind people there, but the unkind ones made it unattractive.
I will research Lida Mattman. My new ND is involved in research of biophages for treatment of viral things. So in the case, a biophage targeted at the Strept. I'm getting tested for Strept and other viral things next week. 
Cheers!

Oh, on phages, you should read the thread Endolysins, we are talking about phages over there.  Smile

@Fred:thanks for the extra explanation. Wink
Bill Offline
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 1,624
Threads: 6
Joined: Dec 2012
Gender: Male
Location: Queensland
Treatment: Dimethyl fumarate
#7
Sat-19-08-2017, 21:38 PM
Welcome CrowFriend,

Is there a reason you aren't seeing a dermatologist? There are treatments nowadays that can see you cleared of disease in a few months. I avoided proper treatment for over a decade. By the time I started systemic treatment I had psoriasis all over my body (40% coverage), damage to my joints, and arthritic pain that was poorly controlled with analgesics and prevented me from sleeping for more than a couple of hours ( I would wake in severe pain in either hips or shoulder, spend an agonising few minutes changing position, then repeat the cycle.). Systemic treatment reduced my disease activity by about 90% within a month. Nearly five years later I have almost no visible disease or arthritis. I have a legacy of joint damage which is slowly improving.

Alternative treatment helps very few people. For most it will prolong suffering and increase the risk of permanent damage. I hope you find effective treatment soon.

Well wishes.

Bill
jiml Offline
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 47,972
Threads: 357
Joined: Oct 2013
Gender: Male
Location: Norwich England
Psoriasis Score: 3
Treatment: Skilarence 5x120mg a day
#8
Sat-19-08-2017, 22:27 PM
(Sat-19-08-2017, 18:31 PM)CrowFriend Wrote: Hi, I'm happy to see if this is a place that will be supportive and helpful. I was on Inspire before it was Inspire and after, and I really got discouraged with the snarkiness factor. 
I've had psoriasis since my late 20s, in my mid 50s now. I also have other autoimmune conditions like interstitial cystitis and what I thought was Hashimotos thyroidosis, but that just got challenged by a new ND who said she thought it wasn't, that I had hypothroidism for sure but not Hashis. Lately (menopause, death of beloved pet, depressing state of nation/world) the guttate has gotten worse and worse. Because I was treating primarily with diet and supplements, I was starting to blame myself for not dialing in the diet and supplements adequately.
I recently (two weeks ago) used a topical corticosteriod. I will post a question about that in another thread. I also started LDN.  My new ND is going to test for Strept, which she says is correlated with Guttate P. Also viral load, also she suspects Lyme disease! So I guess I'm starting a new phase of my healing journey. 
Thanks for reading!

Hi Crowfriend and from me a late  Welcome ....yes we pride ourselves here on the friendliness of members, as fred says we can disagree but are always respectful ....I also was on the other website, and left for the same reasons ....I felt some members were not helpful and some ridiculed new members ....you won't find any of that here ...this site is self funded by Fred so you will never be asked to donate, you won't see any ads, or spam .......just sufferers like yourself discussing their treatment and supporting one another ....
I hope you enjoy your time here, you do seem to have a lot of problems, I hope your ND can help you, but wonder why you don't see a dermatologist for conventional treatment, we have a couple of members who have mentioned LDN but unfortunately haven't kept their threads updated ....
Good to have you on the club ....I see you have another thread with some good advice offered already
Jim


A great way to stay in touch with the latest news and members threads is to subscribe to our free monthly newsletter ....you can do that by clicking   .....Groups and following the instructions
Wooley Offline
I'd be unstoppable if I could just get started!

100 + Member I Just Cant Stop !
Posts: 2,645
Threads: 7
Joined: Jul 2017
Gender: Female
Location: Spain
Treatment: Nothing currently
#9
Sat-19-08-2017, 22:37 PM
Hi CrowFriend

Welcome to the group.....I also looked at Inspire previous to joining this group....this group is way better, more supportive, friendly and will help and support all we can......

I am a relative newbie too and have had lots of help, advice and support so far, so you will too.....

Fingers crossed that your next phase of your healing journey is a positive one....

Welcome again

Wooleyb
D Foster Offline
“You only live once, but if you do it right, once is enough.”

100 + Member I Just Cant Stop !
Posts: 25,150
Threads: 17
Joined: Dec 2014
Gender: Male
Location: East Yorkshire
Treatment: Stelara 90mg and G&T
#10
Sun-20-08-2017, 13:47 PM
Hi CF , welcome to the most friendly site you will find unlike the Inspire site which I have been on but this site does not have idiots trying to promote magic rubbish , it is not sponsored at all and has the most comprehensive information on P and PsA that I have come across. It is populated by a load of barmy inmates who will answer any question asked truthfully and from personal experience .
The Inspire site has descended into a real mess with people telling others things like that P is caused by a parasite or other stupid ideas ,pushing this that and the other , it's been let down by the people who are suppose to be running it.
You have good look around and ask anything you want to know , you are among friends here.

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