Author Topic: Schamberg's?  (Read 129992 times)

0 Members and 2 Guests are viewing this topic.

Offline Sunshine77

  • Registered member
  • *
  • Posts: 12
Re: Schamberg's?
« Reply #60 on: Wednesday June 21, 2006, 06:25:05 AM »
      Hmmmmmmmmmm....where do I start???
I am still searching for an answer!  Am still seeing the naturopath and he now has me on a yeast killer.  He also has me on a supplement for the kidneys, which I think lowers the uric acid in the system. He did not say why he was putting me on this, but I find it interesting in that the med. mentioned above deals with the uric acid.   I am not seeing a huge change in the Schambergs, but supplements take time.
      I went to see a vascular dr. today.  Aside from someone leaving a very noticeable dent in my car door :'(, the appointment was uneventful.  You know, the usual "Oh that's Schambergs...they don't know how to cure it." 
      As I am getting rather disappointed with the conventional medical community, and more and more frustrated with the Schambergs :-\, I have decided to look into other areas.  In my readings I have come across information that says there may be a connection to, hmmmmmmmmm..I think they said khaki.  Now I wear jeans all the time, and I notice that although I have a few random spots on my feet, most of the spots are from the top of the running shoe and up to my knee. Does anyone else have this pattern.  Is there anyone else out there that thinks perhaps this could be a reaction to the material in their jeans. ???
       Second point...........could this be a reaction to stress???


Any other suggestions??


Karen

Offline lisa marie

  • Registered member
  • *
  • Posts: 3
Re: Schamberg's?
« Reply #61 on: Sunday July 02, 2006, 03:02:33 PM »
Has anyone read or talked to their doctor about Schamberg's leading to cutaneous T-cell lymphoma?  Have read a few things on the internet that says Schamberg's could be a precursor to this type of cancer. 

My marks were gone for awhile but now it seems like they are coming back again and in the same places they were before.  Strange!   Also, do anyone else's legs swell up?  Even my husband noticed my legs looked swollen.

Offline Caspian

  • Registered member
  • *
  • Posts: 29
  • Gender: Female
Re: Schamberg's?
« Reply #62 on: Tuesday July 18, 2006, 12:05:53 PM »
Hello fellow Schambergers.

Karen, I'm sorry to hear that your Schamberg's is causing such frustration.  Have you had any joy with the naturopathy yet?

Like Lisa Marie my lesions were decreasing in number and severity until recently - I have a huge flare-up all over my legs now, which I am sure is linked to the heatwave we're having.  It's just depressing to have a flare-up during the season when you want to wear shorts and go swimming!  I'm not sure about swelling though, but if it's hot where you are then that's bound to have an effect on fluid retention and stuff.

Out of interest - do you find that exercise (I play badminton) helps or causes more lesions to form?

Anyway, best wishes to all.

Anna. x

Offline Sunshine77

  • Registered member
  • *
  • Posts: 12
Re: Schamberg's?
« Reply #63 on: Wednesday August 02, 2006, 02:17:18 PM »
Update:
       I have fallen off the naturopath protocal while on vacation, am just getting back on it now.

      HOWEVER..... my spots are lessening!!!   YAY!!!! ;D ;D ;D

      What did I do??  I cooked beans...more than I needed and ate them 2 days in a row.  Then I started to notice that my aches and pains were diminishing.  Spurred on by this I decided to try a vegatarian diet.  IT WORKED!!!  My inflammation is greatly reduced!!  But along with that blessing I noticed that the "Schambergs" did not look so "angry."  So I have stayed with this way of eating and the red dots are gone, and I am so far left with the "blush" of Schambergs.  I do not know if this is a "fluke" or just so happens to coincide with a remission....but whatever it is I am staying with my new lifestyle!!!
      If you are wondering what the connection is...my GUESS (and I stress that point!!)is that Schambergs is the result of inflamation.  Google the medicine mentioned in one of the previous posts.  When I did, I believe the medicine is usually prescribed for gout, which is an inflammation.  There is also in one of the posts a link to inflammation of the gums.  Hmmmmmmmm...interesting, wouldn't you say??
      Now if any of you are already vegan...and this doesn't affect your Schambergs, please let us know.  This is just a theory....and I have NO medical background...but it seems to be working for me??
      If you decide to try this.....let me know and I can give you some awesome links that show you how to be a HEALTHY vegetarian!!! Don't want to trade one problem for another!! ;)
      By the way, since going "veg" There have been a number of people, books and websites that have supported the concept of taking meat out of your diet to ease arthritis(inflamation). 
     Please check this out for  yourself before you take the plunge!  Also this didn't happen over night...be patient.
     I am anxious to hear if this works out for anyone else. 

     Oh, by the way, if you are wondering, "Do I miss the meat?"
                                    NO!!!!

Good Luck, and please keep me posted!


Karen

Offline glava88

  • Registered member
  • *
  • Posts: 3
Re: Schamberg's?
« Reply #64 on: Wednesday August 09, 2006, 04:46:53 AM »
Hi again...i hope everyone is doing ok...i'm getting sooo frustrated with this disease...My 18th brithday is comming up in a few weeks and it should be a happy time for me but it just reminds me how long i've had the disease for...going on 3 years...i first got it when i turned 15 now i'm 18...the past three years have been very emotional and stressfull...Like i said b4 i also have autoimmune neutropenia (low white blood count) i'm not sure if there's any connection...i've been to SOOOOOOo many doctors...hmm where do i start...when my spots first started i went to a few local doctors just to see what the heck the spots were...when i found out it was schamberg's my parents took me to University of Penn then John's Hopkins then Saint Christophers then Childrens hospital of Penn...every time i went to the doctors it made me more upset because they all said the same thing which is the HARDEST thing to hear...."NOOOO CURE"!!! and ohh my favorite "It just takes time"...well i'm sure u guys feel this way too but i'm getting very impatient...i'm thankful that what i have is benign but it still have caused alot of distress in my life...me and my parents decided to get away from tradition medicine and are now looking into homeopathy. I saw a naturopath and now i take alot of different vitamins and supplements that are supposed to help capillary fragility. I'm taking large doses vitamin C, bioflavanoids, multivitamins, billberry, and some more that i dont remember the names of...i also recently went to a homeopathic doctor and sat through a 4 hour appt...he gave me a remedy and i'm taking it too see if anything changes...if anything does i'll let you guys know...My legs are almost completely filled with spots and from the they've never gone away in 3 years...i'm not sure how some of yours are dissappearing and then comming back it seems like mine are there for the long haul which is very depressing

Offline dolores

  • Registered member
  • *
  • Posts: 4
  • Gender: Female
Re: Schamberg's?
« Reply #65 on: Thursday August 10, 2006, 10:17:55 AM »
Hello all,
I've had Schamberg's for well over 3 years, it started maybe about 4/5 years ago when i got a small circular patch on my right leg, which slowly expanded, but i didn't really take much notice until others started appearing on the ankle of my left foot 3years ago. Since then it's spread much faster on my feet/ankles/lower legs. I saw a dermatologist 3 years ago who said the same old, and I've just had a second opinion recently(the same).  I've spent the last few years keeping my legs covered, even when i'm on my own because i don't really want to look at them, hence my lack of action, but now I'm almost 19 and I'm fed up!
I also get dry skin in the same area, but its not particularly itchy, and as above, I've not seen my marks come and go, they've just pretty much spread over the years (although sometimes they look brighter - has anybody else noticed this after alcohol?)

My doctor said that exercise might help - does anyone have any experience with this, does it improve of make it worse?

In answer to the post above, it's good to hear someone else is going through the same thing (well obviosly not good, i wouldn't wish it on anyone, you know what i mean!). My doctor said that it was due to the leakage of red blood cells, which couldn't be lasered because your white blood cells are the only things that can break it down, but the leakage is occurring at a faster rate than the white bllod cells can cope with - so possibly your low count is related?

I am hoping to start med school in september (fingers crossed for grades next week) and I am determined to get to the bottom of this! Keep me posted, I'm so glad I found this forum!

Offline glava88

  • Registered member
  • *
  • Posts: 3
Re: Schamberg's?
« Reply #66 on: Thursday August 10, 2006, 02:51:22 PM »
thanks for the information Dolores...yeah i understand how fed up you are...i can relate because i'm pretty much just as young as you are...i also have dry skin and what i discovered is that Vitamin E Oil 24,000IU works best to keep your skin moisturized.... you can buy the oil in any drug store or in any vitamin shop...i'm not exactly how the spots react to alcohol but what i do know is they get worse when under stress and when i'm on my feet for a long period of time...goo luck in med school i hope you can do something to find a cure for this disease....i'm also entering pharmacy school this fall so i hope to do some research in the future to try and find a cure!

Offline dolores

  • Registered member
  • *
  • Posts: 4
  • Gender: Female
Re: Schamberg's?
« Reply #67 on: Friday August 11, 2006, 09:22:58 AM »
Thanks for the tip, and good luck in pharmacy school! I also forgot to say that my doctor gave me the number for some specialist that provides make-up to conceal birthmarks etc. He said it would probably take ages to apply such a large area, but apparently it's designed to stay on for about 24hrs or so, and is waterproof so you can go swimming. I don't know if anyone else has had any experience with concealing their marks, but I'm gonna give it a go..maybe there's someone similar in your area?
Also someone above said they can't even wear black shear tights because their marks show through - mine do too, try getting some hoisery (Accessorize do a good pair) They seem to completely throw the eye off, despite having loads of holes in them.

Offline North

  • Registered member
  • *
  • Posts: 40
  • Gender: Female
Re: Schamberg's?
« Reply #68 on: Monday August 14, 2006, 05:31:17 PM »
Hey everyone,

Ok I hope I can bring some good news................. my Schamberg's has totally cleared up for the first time in about 4/5 years. I didn't want to say anything before, but I haven't had any new lesions for over two months! I've also been taking a large dosis of vitamin C (for a different reason though) I have no idea if there is any relation between that and my lesions dissapearing.

Good luck everyone.

Greetz, Weena
« Last Edit: Monday August 14, 2006, 05:37:44 PM by North »
Stress?!! If the planets don't hurry around the sun, why should we? ~ Loesje

Offline ThomasDK

  • Registered member
  • *
  • Posts: 1
Re: Schamberg's?
« Reply #69 on: Wednesday August 16, 2006, 05:07:33 PM »
Hi all

I have been reading in this forum for a while, and now i feel its my turn to add some informations/experiences.
I got this disease last year, so i have suffered of this for about 1½ year now.
It's pretty frustrating to have, and ugly too.

I will list my experiences below.

Good: Sunshine and fresh air on affected skin, cream whenever feeling dry in affected areas

Bad: Affected skin covered with clothes, swetting

So, while it's ugly and I really don't want to show my legs/feet, it helps getting a little tan, besides hiding the rash, the rash dissappears, this is good in summertime, but the rest of the year  :'(
I have a plan of trying with some tanning bed.
I have used steorid cream, it works, but isn't good in the long run i think.

Well thats all for now, hope you can read my bad english

Thomas (from Denmark)


Offline Caspian

  • Registered member
  • *
  • Posts: 29
  • Gender: Female
Re: Schamberg's?
« Reply #70 on: Wednesday August 16, 2006, 09:35:29 PM »
Weird, weird, weird.  ???

I now know there is a link between hormones and my Schamberg's.  Just before my period (for about a week), the rash is particularly bad, but as soon as my period starts it subsides a little.  The rash slowly appears again as the month goes on, and the cycle starts again!

So..let's see...progesterone peaks just before the monthly menace....so perhaps it's linked to progesterone levels?  *puts on lab coat* I am going to investigate!

Clearly, this doesn't help male sufferers, but it's interesting nonetheless.

What have other ladies found?  Hormonal links or no?

 ;)

Anna. x

Offline paulinybeany

  • Registered member
  • *
  • Posts: 5
  • Gender: Female
Re: Schamberg's?
« Reply #71 on: Saturday August 19, 2006, 03:08:47 PM »
Hi, I was diagnosed with granuloma annulare - started on both forearms years ago - then went away.  Came back last year - same place. Also have a circle of dots upper arm - never itchy or bothersome. Went to a derm who diagnosed Granuloma Annulare - prescribed  Clobetasol -
Seemed to get worse with that - now, lucky me, it has spread (doctors say it is usually localized).  They said it will not hurt me - Hard to believe because now I have it everywhere, legs, feet, knees, underarms, etc getting pretty scary. I never heard of Schamberg's - will research.  Good luck

Offline sarahannette

  • Registered member
  • *
  • Posts: 4
  • Gender: Female
Re: Schamberg's?
« Reply #72 on: Friday October 13, 2006, 08:05:50 PM »
so im not sure if people check this often but i will share my story in hopes that someone will read it and find it useful.

i do not have insurance so i waited until my spots were a lovely, bright, reddish color before i went to the dermatologist. i was diagnosed with schambergs. the only thing i heard the dr say was it was caused by thin blood and then i burst into tears because he explained that there was no cure for this.

the dr advised me not to take anything containing asprin because asprin was a natural blood thinner. including advil, midol or pamprin (even alcohol became a HUGE no no). i considered advil to be one of my best friends!!! nothing else takes care of headaches for me the way advil does (i was taking at least 2-3 advils a weeks). the most incredible part of this was: i remembered that my previous cycle i experienced immensly painful cramps and i had doubled up on midol and advil through most of my cycle to calm my cramps. within a week of my cycle ending, my boyfriend pointed out that my spots were now covering both my legs entirely, they were spreading to my forearms, and they were this deep red color. it seemed every day that i woke up i found a new spot somewhere on my body.

i was given the same cream that it seems that everyone else has been given. i was skeptical about it, but i used it two times before i stumbled across this forum where everyone seems to agree that it does not help clear up their spots. so i stopped using it altogether

so i started thinking "if this is ultimately caused by thin blood, why cant i just reverse that and take a blood thickener?". as i already said i do not have insurance and could not afford to keep going to the dr and keep getting expensive prescriptions. so i sat out to find a "natural cure".

ive never been a "health nut", but i figured that if maybe i could change my diet somehow, then i could clear up my schambergs by using nutrients. i quickly stumbled across a site that stated that VITAMIN K was a "blood clotting vitamin". YAY! i didnt want to get too excited though... i didnt to be let down. i took it one day at a time, and told myself that if this doesnt work then i will move onto the next option.

next step was "where can i find vitamin k?". i found out that there are vitamin k supplements, creams and of course the foods that most of us see on a daily basis. i decided before i was going to buy supplements i would try food. tomatoes, broccoli, cabbage and many other foods contain vitamin k. i ate a bowl of cole-slaw (which contains cabbage for those of you that do not know) for breakfast, i had brocolli with my lunch, tomatoes with my dinner. my "in between meals" snack went from cookies, ice cream and chips to ANYTHING that had vitamin k in it. i more than tripled the recommended daily intake.

in only a few days i noticed a complete 180. no new spots were appearing. my old spots were fading (very, very quickly). within only one week my spots had improved more than 75%. the spots that were the biggest and the ugliest cleared up within one to two weeks. it felt like a miracle! the spots on my arms have completely cleared up, and the ones on my legs have faded drastically. they faded enough that i was comfortable wearing shorts on the last nice day of summer. now i dont eat so much of all those foods. i maintain eating about 2 tomatoes a day and a small bowl of cole-slaw a few times a week. i have noticed that if i miss a few days or run out of my vegetables before i can make it to the grocery store, my spots slowly start to get darker.

i know that increasing my vitamin k intake, not taking anything containing asprin, and skipping out on happy hour with my friends has DEFINITELY helped my case. i hope that this information can help every single one of you.

this is a site that lists a few foods that contain vitamin k, how much they contain and how much vitamin k you should intake
http://www.becomehealthynow.com/glossary/vitamin_k.htm

if anyone has any questions about something that maybe i have not covered completely please feel free to email me at email address removed

GOOD LUCK!
 
« Last Edit: Friday October 13, 2006, 10:20:42 PM by totalfolly »

Offline brianarose7

  • Registered member
  • *
  • Posts: 4
  • Gender: Female
  • Live Aloha!!!
Re: Schamberg's?
« Reply #73 on: Saturday November 25, 2006, 02:09:11 AM »
Hi there.  Sounds like you have something very similar to what I have.  No itching. no pain, just ugly red marks all over. Mine are on my legs and a few on my arms.  Started on my inner knee and then got worse and worse.  What I was diagnosed with is Chronic Pigmented Purpura Dermatitis, I think it is a type of Shambergs.  It has been very discouraging because there is no treatment. I have researched this a little and steroids have been used but the side effects are worse than the disease.  I have also read that Vitamin K deficiency might be linked to causing this disease.  So I have started eating foods high in Vitamin K and also taking Flavanoids that help with Cappillary health.  Basically the doc told me that the blood vessels are bursting at the surface at the skin causing the red patches.  So vitamin K helps "thicken" the blood the prevent this.  I don't know though, I just started doing this so we will see what happens.  Also Arnica has been direcly on the skin to help lessen the redness but it hasn't helped me yet but I am trying, it can't hurt right!! 

Don't be discouraged, you are not alone.  I got this soon after my wedding in Maui and I have had this lingering feeling that the altitude during the plane trip messed with me and my circulatory system causing this.  But that is just my theory, who knows.  Let me know if anything eventually works for you.  If not, I guess we just have to learn to live with it even though it sucks.  it could be worse.  Good Luck

brianarose7

Offline sarahannette

  • Registered member
  • *
  • Posts: 4
  • Gender: Female
Re: Schamberg's?
« Reply #74 on: Sunday December 03, 2006, 02:01:49 PM »
i hope this works for you. as for me, i can say that i DO NOT have one spot on my entire body.

i havent had any new spots develop in almost 3 months, and my spots completely cleared up about a month and a half ago. even the iron deposits left behind eventually faded. i am so excited because i took this really hard; not knowing if my spots would ever go away, if i would live with new spots coming up on a daily basis. my family and friends were literally shocked when they looked at my legs and saw no spots after only 2 weeks.

i would recommend that anyone with this diagnosis at least attempt the "vitamin k" diet... its so simple and for me it was so effective. i havent had to worry about maintaining my high vitamin k intake, and now i can take advil and midol again with no spots developing!!! i havent attempted alcohol yet, so im not sure if it affects the condition, but at least now i know how to reverse it. this is not something i will have to deal with for the rest of my life.

i hope that everyone finds this useful!

Offline Sunshine77

  • Registered member
  • *
  • Posts: 12
Re: Schamberg's?
« Reply #75 on: Sunday December 03, 2006, 09:11:51 PM »
sarahannette:
     That is amazing!  I was having some luck with going "vegan", but now am beginning to think it was probably because I ws eating more food with vitamin K!  I am inspired by your writing, and will try my own experiment with eating more "vitamin K veggies!"
     Thank you so much!!!!

Karen

Offline sarahannette

  • Registered member
  • *
  • Posts: 4
  • Gender: Female
Re: Schamberg's?
« Reply #76 on: Saturday December 09, 2006, 10:58:55 AM »
please please please keep me updated on how this works out for you!!!!!
i know without a doubt that vitamin k and me not taking medicine containing asprin cleared up my schambergs. there is no other explanation. all of my spots simultaneously cleared up.
im so anxious to hear how this works for other people.
i know how upset my diagnosis made me and i know how happy i was when i realized that i found something that worked, i hope that this works for you as well.

let me know how it goes!!!!

Offline JETTA7474

  • Registered member
  • *
  • Posts: 2
Re: Schamberg's?
« Reply #77 on: Monday January 01, 2007, 09:51:04 PM »
Wow - it's nice to find a post where people are going through the same thing I am!  There is hardly any data out there about this frustrating disease!

I was diagnosed with Schambergs 2 years ago.  My dermo said that there is nothing I could do except try these lazer treatments which may not work.  I said yes - anytthing!  I did, and they are less red, but still very very noticeable. i only have them on my legs as of now but it is spreading.  Little dots every 2-3 months and one big one every 6 months. 

What are some homepathic treatments that work?  I want to ask my dermo about them.

What is interesting to me about this forum is that some people had the pepper dots go away?  They just dissappeared one day?  That sounds like it's not Schambergs or do I have hope that these will go away?  Explain more....  Not sure if I should schedule another expensive laser visit.

I feel horrible for people who have these dots that also itch.  So far, it's just been emotionally dibilitating and unsightly.

Offline JETTA7474

  • Registered member
  • *
  • Posts: 2
Re: Schamberg's?
« Reply #78 on: Monday January 01, 2007, 10:25:40 PM »
also, most of the research I've done says it's more prominant in men.  I'm a 32 year old  healthy active woman, and while I wish noone had this disease - it is nice to know there are other women out there with it.  I was feeling very alone and freakish.

So - after readin all these posts.  Sounds like I will ask my dr. about
colchicine  - you take it orally?
add more Vitamin K into my diet - which I'm sure I proably do anyway

and hope the girl who is going to med school comes up wtih a cure... this is just SO awful to deal with.

Offline spottedinct

  • Registered member
  • *
  • Posts: 2
Re: Schamberg's?
« Reply #79 on: Tuesday January 02, 2007, 08:08:46 PM »
Hi- I'm so happy I found this forum!  I started with the spots at the end of last March- they looked like lines of a rash and looped in and around my chest, stomach, arms and legs- they didn't itch, but I finally went to the docs, who said it looked like classic pityriosis(Christmas tree rash) and should go away in 6 wks.-but it didn't and started to look worse, spreading out and getting darker with areas of little dark red dots, so I went back- she said, "No I was wrong"-and sent me to my dermatologist.  She said-Capillaritis- nothing you can do-heat, humidity and standing make it worse- and maybe it was a reaction to something I took.  So then I went back in July, after I had blood tests to ease my mind about other things it could have been.  She said the blood tests looked fine- I said,"does this rule out Lymphoma?"(that I had read about)-she said "no, you need a punch biopsy"- so I had one and it confirmed capillaritis, and she said that 3 other women of different ages had come in with the same presentation and same problem which led her to believe that it was being caused by a virus!
So I went on my way- but had to go to my gynocologist to see about having an ultrasound instead of a regular mammography-because I didn't want to make those spots worse- so she looked at me and was horrified- she even called me back to say she had talked with a derm. friend of hers who told her I should have my blood tested for autoimmune, liver,etc. and go for another biopsy.  Meanwhile I was going to a naturopath to try some sort of help and she also wanted me to have more tests.  So, I went back to my regular doc. and she brought in another doc to confer on the tests- so I had them and I don't have autoimmune!
Then I had to go and have another biopsy- the dermatoligist said that a man had just come in that had this for 6 months- anyways the biopsy still shows only capillaritis and she thinks I'm just off the bell curve.  So that's where I stand- Oh yes, the summer before this came out I had to big red circles on my stomach and a 103.9 fever-they gave me a lyme disease test(negative) but still took 3 wks. antibiotics.  Also the month before I got it I took remifemin(has black cohosh) for menopause symptoms ( I'm 47) for one wk.- I later found this is a blood thinner-so don't take.  Also during the first month of it I took fish oil and licorice root thinking I was doing this do get better(they are both blood thinners) Finally I had stopped all supplements for a few months- but nothing changed.  Then I went to naturopath and she is giving me normal multi. vit., lots of C, calcium, mag. and Zinc, and now flax and borage oil, and kyo-chlorrella and adrenal support and a tea of horsetail and bilberry.  I look worse than ever!, but now I see it could have been the alcohol I've had during the holiday season!    I now sit on a cusion- because those are the uncomfortable ones and also take a shower quickly without the lights on and dress fast- so I don't have to look at them as they disturb me and make me think I'm sick even though I guess it's harmless and I've been lucky not to have them on my face and neck.  Anyways I always show them to people to find out if anyone knows anybody or anything to help and everyone is horrified.  I also started to get happy when one out of hundreds started to go away- but now I notice more little spots appearing there.  It may be from standing in alot of check out lines!    Now I will try more Vit. K foods and I just found an article about Hydroxypyridones working for rosacea(which I also have) and this problem- but I don't know what that is yet.  I was also theorizing about menopause and hot flashes, hormonal fluctuations and this problem.  I wish there was  a study.  When I asked my derm. about what kind of virus this could have come from she didn't know and thought people just react differently because of genetics...well, thanks for letting me tell my story- I think even my family is getting tired of hearing about it, and it is good to know that it can last for so long- now I know it's normal for it.----Thanks!