Recent Posts

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1
Oi Admin ! Wake up ! / Re: Verification hoops
« Last post by Blackmeat on Tuesday May 16, 2017, 04:44:59 AM »
Would I like to share information with you to share information?
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Skin Complaints and Skin Disorders / Re: PMLE interesting connection
« Last post by Blackmeat on Tuesday May 16, 2017, 04:41:34 AM »
The fact that I got to watch this information helped me a lot.
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News and Events / Black Mold, Colloidal Silver, and Tinea Versicolor
« Last post by RubyS on Tuesday May 09, 2017, 01:24:37 PM »
I have had tinea versicolor for the past year and a half. Have tried applying apple cider vinegar twice to three times a day and cutting sugar out of my diet, which slowed it down but did not stop it. Ketoconazole did not work at all for me. Neither did tea tree oil. Finally I started treating myself with
colloidal silver topically and orally 3 times/day (only low ppm colloidal silver is safe and effective to use) and within 4 days, no new spots grew, and the existing spots have started to fade very slowly (the sun's not helping too much)  I'm still continuing to take the silver after three weeks now, just to be sure that it won't come back, since summer is approaching, and I've even slowly introduced sugar back into my diet. I walk at least 1.5 hours a day in 27-30C heat and so far, knock on wood, even sweat and damp skin hasn't provoked any further outbreak. On the top of that, I have discovered and rectified the problem of black mold in my apartment:

This is very interesting - one of many articles on the effects of black mold poisoning :

http://inspectapedia.com/mold/Mold_Illness_Symptoms.php

My condition developed around a year after I moved into an apartment with black mold on its walls which I thought was  successfully removed after being sprayed with bleach a few times last spring and summer, but apparently bleach is by far NOT the most effective means to get rid of black mold. It kept coming back, not quite visibly but I would smell the  musky smell every now and then. That, over a year, was apparently enough to weaken my immune system, assisting in the overgrowth of TN, amongst other symptoms that can develop. It could be one reason that lots of people keep getting it back year after year. I strongly suggest everyone to check your home to see if black mold has a part to play in your skin condition.
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Skin Complaints and Skin Disorders / Re: Grover's disease
« Last post by Maestrofred on Friday May 05, 2017, 04:15:26 PM »
I just saw an ad on Facebook that looks promising for helping during the summer months.  The link below is for a new technology that helps lower your body temperature when you wear a shirt that cools as you sweat.  I'm just curious as to whether anyone on here has tried one of these yet.  The reviews look promising and it may help us from breaking out in a rash on a hot summer day.  I'm thinking that it might be just the thing to wear when I'm outside cutting grass on a warm summer day.

www.ArcticCool.com/Shop
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Skin Complaints and Skin Disorders / Re: Granuloma Annulare
« Last post by nicoleloh on Tuesday May 02, 2017, 06:09:08 AM »
I'm a 40 year old female in good health who has been suffering from Granuloma Annulare for over 3 years.  Here is my story:

I noticed 1 red bump on my shin in 2014.  I thought it was an ingrown hair.  But in never went away.  Then after awhile a second bump developed.  So I had my first (of many) visits with a dermatologist.  Initially the dermatologist thought it was Molescum Contagiousum.  A biopsy was taken and the results came back as Granuloma Annulare.  At that point, I was relieved.  At least I was now diagnosed with something that wasn't contagious - How foolish was I?!!  When I look back thinking about how less than thrilled I was about having those TWO bumps on my legs, I just want to laugh at myself!  What I wouldn't give to have just TWO bumps on my right shin!! 
More and more bumps popped up over the next few months.  At first my GA was in the form of papules, not the lesions that you typically find associated with GA.  They focused mainly on my knees, both front and back and there were so many little ones that they looked like bug bites!  The GA on my knee caps tended to come in the papule form and the GA behind my knees were mini lesions.  I would look at pictures on the internet of GA and mine seemed different.  They were no where near as big or connected as it appeared in other reports of GA.
   Like everyone else, I was told that no one knew why it developed and that it would likely just go away on its own. (Yeah right)  At first my dermatologist shot all the bumps up with Kenalog injections, which worked fairly well.  I was going in once a month and some needed more than one injection, but for the most part, all the GA spots that were injected with the Kenalog went away or faded to indented white patches, as one user mentioned.  But then I started to get them all over the backs of my legs and on my elbows.  I read a post on here about a woman who said GA wasn't painful unless she put her elbow down in the wrong spot where a bump was.  I can totally relate.  That would happen on my knees and my elbows.
   The last time I had any kenalog injections, I was poked more than 40 times.  Clearly, I needed to find another solution.   It was time to switch to a corticosteroid cream.  Tried two different kinds.  Neither worked.  Then I noticed bumps forming on my stomach, and up my thighs.  The GA was getting worse.  My dermatologist took another biopsy from the back of my leg.  Still Granuloma Annulare.  I was prescribed doxicycline (an antibiotic).  I was told to take it 3 times a day on an empty stomach (2 hours from eating).  Usually, I can take medication with no problems.  I rarely get nauseous.  I took the doxicycline for a week before giving up.  It was awful.  It made me feel funky about an hour after taking each pill.  I'd get dizzy and have hot flashes. 
   I then decided to get a second opinion.  Surprise, surprise, the second dermatologist agreed it looked like GA.  He suggested I take 1500mg of Niacinamide daily.  So I did.  For a month.  I also did my own experiment where I put the corticosteroid on my arms, but not my legs to see if maybe the combination of the Niacinamide and the corticosteroid would work.  Nothing.
   So then I did some preliminary research online and read some posts suggesting that maybe hormones had to do with it.  It made sense.  Supposedly GA is more common in women and more common in 50-60 year old women.  Right around the time women's hormones go haywire.  Then I was talking to a girlfriend of mine about my "spots."  She mentioned that when she was pregnant with her son she developed localized GA - one big lesion on her arm which went away soon after she was no longer pregnant.  And if you read all the posts on this site, you read a lot of women saying that their GA actually went AWAY when they were pregnant, only to come back again when they weren't.  Interesting...
   Three and a half years ago, I gave birth to my son.  Vaginal birth, he came out quick and healthy.  About an hour after I delivered him I started to hemorrhage.  I ended up losing 3.5 liters of blood.  Hemorrhaged 4 times in the course of 5 hours and ended up needing a blood transfusion and an emergency hysterectomy.  Unbeknownst to anyone, my son's placenta had grown not just through my uterine lining, but the uterine muscle.  They took my uterus and an ovary.  6 months after I started to notice several abnormal things happening with my body.  What I don't understand is why it took 6 months, but that's a question for another day.  Maybe all the post pregnancy hormones stayed around for awhile?  Anyways, I bring this up, because several people mention that some sort of TRAUMA preceded their first GA outbreak.  If true, this would be mine.  I lost a ton of blood that day.  It took almost a year to realize that I was getting horrible headaches at the end of every day around the same time, because I wasn't just slightly low in iron in my blood, I was severely low in FERRITIN - the iron stored in your liver.  It took going to a naturopathic doctor to find out that not only was I severely anemic, but that my red blood cells were too low.  My body wasn't producing enough red blood cells, to get oxygen to my organs.  Yet with running around with 2 kids, working out, etc., my cortisol and adrenaline were being overused causing those major headaches at 4pm every day.  (fyi - started eating 100g of protein a day with iron supplements and headaches went away!) 
   I mention this because this was also the same time I noticed my first GA spot. And the naturopathic doctor also tested my progesterone, which was low.  So maybe, the people talking about a hormone imbalance were on to something?
   In January 2017 I noticed what I thought was the first GA spot on my face!  My previous, "oh well" attitude was immediately thrown out the window!!   I started researching GA more thoroughly.  I came across the study mentioned above.  The rifampin, ofloxacin and monocycline regiment taken once a month for 3-5 months.  My dermatologist was on board for giving it a try.  My pharmacy also could not get a hold of ofloxacin so it was replaced with a similar generic drug.  Supposedly, for the 6 in the study, they noticed results after 3 months with an almost complete clearing at 5 months.  I have taken 4 doses.  My GA is worse now than ever.  Unless a miracle happens during dose 5, this treatment was a big fail!
    I went in to see my OB/GYN in February 2017 who actually put me on birth control pills to stabilize my hormones.  It's been 5 months and no change to the GA.
    So I decided to do even more research on GA.  I read medical research, clinical studies, medical journal articles.  That's when I realized that for General Granuloma Annulare like mine, this wasn't going to be a situation where it was just going to "go away" on it's own as the dermatologists like to tell you.  I read that General diffuse recalcitrant Granuloma Annulare like I have was going to take something proactive to knock it out of my system.  Dapsone, Plaquenil, Humira - minor studies done - but what works for one, doesn't necessarily work for another - and some of these drugs come with major side effects. 
    I spent hours one day Googling the dermatologists who had authored the articles I found.  I called them.  I emailed them.  Could anyone help me, or at least recommend a dermatologist in the Los Angeles area who was actually experienced with GA.  Our type of GA!  Not the kind they have all seen that just goes away!  Three doctors actually contacted me back.  All on the east coast.  They all recommended I go to either UCLA or USC. 
    One particular dermatologist in Philadelphia was very kind and recommended a doctor at UCLA.  In March 2017, I tried to make an appointment.  I'll let you know how it goes... at the end of June 2017!  Yes, that's how long the wait is! 
    In the meantime, the specialist in Philly mentioned how rare our form of GA is and he suggested I get another pathologist's opinion.  So I decided to see a 3rd dermatologist.  Initially during my visit the 3rd dermatologist thought my bumps looked like Pyryraisis Rosea - a viral infection that starts with one lesion and then spreads throughout the body till it eventually peters out anywhere from 3-8 months later - - But not 3 years.  Nowhere on the internet did anyone complain of having it for that long.  While I waited for the 3rd dermatologist to get the slides from my 2014 and 2016 biopsies, I was given a low dose viral medication to take twice a day. I also started another experiment.  The 3rd dermatologist mentioned Milk of Magnesia for GA and I had read online about coconut oil, aloe, apple cider vinegar and sunlight for Pyririasis Rosea.  So every night for 2 weeks, I put Milk of Magnesia on my right leg from the knee down, Coconut oil on my left from the knee down.  Aloe from a fresh plant on my left arm/elbow and apple cider vinegar on my right arm/elbow.  I also went out in the sun three days in a row.   NOTHING changed.
   Then I got a call last week that the 3rd dermatologist (also a Certified Dermatological Pathologist) after seeing my slides agreed with the original diagnosis -- Granuloma Annulare.  I was told to up the Milk of Magnesia to 2 times a day.  I have another appointment in a few days to discuss other options.
   As sh**ty as the situation is, and as horrible as it looks (especially to me) - I'm lucky, my GA doesn't hurt or itch and as we all know, it's not dangerous, contagious or life threatening.  Don't get me wrong, I live in Los Angeles, wearing pants during our 100 degree summers is less than ideal.  And of course, despite reassurances that GA rarely goes to the face, there is proof on these pages that it does and that would be awful.  I feel for anyone who has it on their face.  I'm so happy for the girl above who's GA disappeared from her face.
   So there you have it.   In conclusion, I think that 1) it is caused by some sort of trauma  2)  it won't go away on its own 3) hormones play a factor and 4) it's an incredibly frustrating condition.  I agree with everyone who questions why there haven't been more studies.  I question why it's ok to just accept that the patient should just try everything in what seems like a wanton, random, unscientific like manner. 
   I haven't seen any 2017 posts on here regarding GA.  Here's a reminder to all of us still suffering from GA - We have to remember to log back on and tell our former co-sufferers what worked for us when/if one day we are GA free.  We are truly our own best advocates.  When it comes to GA, it is clear the medical community does not have their act together.

Thanks to everyone for listening.  I can't solve it, so I guess i just needed to talk about it!

N
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Skin Complaints and Skin Disorders / Re: Mystery skin disorder
« Last post by JoellynC on Sunday April 23, 2017, 06:57:44 PM »
It looks like it might be related to your rosacea.  It could be Pityrosporum Folliculitis or another form of Folliculitis.  I suffered for decades with something that looked like acne, but was seasonal and was found on my upper chest and arms.  Turned out to be PMLE.  You may need to find a better dermatologist who is up on the latest research to know for sure.  The fact that Mayo clinic had no idea is unusual.
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Skin Complaints and Skin Disorders / PMLE interesting connection
« Last post by JoellynC on Sunday April 23, 2017, 06:47:11 PM »
Hi,

I have suffered with PMLE since my 20s and it got worse after a 2 week vacation in FL.

I suffered for years with no answers until 3 years ago (I'm now 50).  As I was diagnosed by my dermatologist I was also being diagnosed by my doctor as being severely Vitamin D and Vitamin B12 deficient.

Last year I found a very interesting connection.  I ran out of my Vitamin D and was lazy about picking some up.  I had the worse case of PMLE after going years with very little manifestation.

I also had remembered reading about Heliocare so when I ran out to get my Vitamin D I got some Heliocare too.

My successful treatment to avoid flair ups is in the morning I take my Vitamin D and Heliocare.  I then put a layer of sunscreen on.  I usually do SPF 30, but have gotten away with lower.  This covers me for the day of walking the dogs, short periods of sitting in the sun and driving in my convertible.  If I'm going to be in the sun for a lot longer like for an event or the beach I reapply sunscreen and take another dose of Heliocare in the afternoon.  I urge everyone with PMLE to get their Vitamin D tested.  Everyone is deficient, but being seriously deficient is damaging in a number of ways.  Be sure to get the right test.  My primary doctor didn't and I suffered for a year with an illness that a specialist found immediately to be Vitamin D deficiency. "Be specific and ask for a 25(OH)D test. There is another type of blood test for vitamin D, called  a 1,25(OH)₂D test, but the 25(OH)D test is the only one that will tell you whether you’re getting enough vitamin D."
8
Skin Complaints and Skin Disorders / Re: Grover's disease
« Last post by Journeyman on Wednesday April 12, 2017, 03:09:56 AM »
Hi All, I'm back, cos the itch is.  Eight months clear (the hottest eight months in our part of the world), and suddenly 24 hours ago I get itchy.  Not severe this time (touch wood), and back and shoulders rather than chest. I know it's the old G from the sensations.  A particular, persistent kind of itch, and very strong sensations followed by relief from a VERY hot shower.

TomA, I checked the band-aid thing and it doesn't cause me a problem.  Nor does seawater, which somebody else finds to be a trigger.  No seatbelt pattern.  No visible correlation with physical vs. sedentary work.  My diet, lifestyle, etc.: no change recently.

As several of us have said, it seems to be different for all of us, both triggers and treatments.

Last time I had it, it stayed with me from a cool temperate region in winter, to the tropics, and back again.  Lasted about four months, most severe at the beginning.  I haven't got a ghost of a clue so far what my trigger/s is/are.  I'll get back to the Vitamin D supplementation, because I just suspect that may have helped, and I do think that coconut oil was very soothing and perhaps alleviated symptoms a bit over time.  Short-term, a fiercely hot shower reliably gives me a few hours' relief, and nothing else does.  For me, the whole thing seems to come and go at random.  Part of the last eight months, I was eating less grains and more animal protein, because my partner was trying Paleo for migraines (Paleo didn't fix them, but we did confirm her sensitivity to wheat and dairy, which we had already suspected).  For me, part-Paleo/non-Paleo made no difference, and I know my body appreciates a hunk of wholemeal home-made bread and local cheese from time to time.  [Dear Paleo missionaries: I'm glad it works for you.  It didn't for me.  Thanks for sharing.]

I just have to come back to the conclusion that Grovers is a very individual thing.
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Skin Complaints and Skin Disorders / Re: Grover's disease
« Last post by Tock7 on Tuesday April 04, 2017, 09:22:27 PM »
I'm new here and have struggled with Grover's for over 10 years and diagnosed a couple of years ago.  I have just recently discovered that flu shots and immunizations flare my Grover's Immensely.  I was so clear until at my physical I was talked into a tetanus shot which I didn't really need.  My Doctor prescribes Fluconazole when I'm really flared, but naturally I try and use anything naturally to calm it. 
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Let me introduce myself ... / 50+ woman with Grover's
« Last post by Tock7 on Tuesday April 04, 2017, 08:58:57 PM »
I've struggled with Grover's for over 10 years but only diagnosed a couple of years ago.  I've just recently discovered that it I get a flu shot, or any kind of immunization, It flares my Grover's uncontrollably. Has anyone else discovered that?
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