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Random Scarring The Past Months (Please Help!)
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LauraLizzie
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Tue Jun 24, 2014 4:14 am      Reply with quote
While a vit D of 20 is low, it isn't horribly low. Mine is 7....


So I don't think that is a big part of your problem.

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Wed Jun 25, 2014 7:10 pm      Reply with quote
Ok, so USC got back to me via voicemail and I was told that my re-test of CPK tested to be normal. I've heard that the levels can fluctuate based on multiple factors, so it's hard to determine exactly why I measured so high in my first test at the UCLA hematology place.

I've tried getting the lady who called me to call back for any other possible help I could get, but I have not heard back from her.

It's frustrating because while I have these very disturbing and uncomfortable symptoms, they are invisible to most doctors and they all feel it's nothing serious. Given it is my own body, I more than ever think it is bug related.

I had a skin scraping done last year that came back negative, but...does anyone know anything else I can get done? I've wanted to do a hair analysis for deficiencies/heavy metals, and possibly bugs, but I don't know where the heck I can go for this. It doesn't seem like a dermatologist can do this. Can anyone help, please? I'm saying this because the most severe of these twitching/prickling sensations is my hair, followed by my eyebrows and sometimes eyelashes. It's clearly hair related. It feels like static, jumping sensations. It's beyond miserable.

LauraLizzie wrote:
While a vit D of 20 is low, it isn't horribly low. Mine is 7....


So I don't think that is a big part of your problem.


Yeah, I figured 20 isn't super low or anything, and a deficiency in itself just cannot cause the range of symptoms that I have been experiencing.
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Thu Jun 26, 2014 3:49 am      Reply with quote
Perhaps you have 2 separate but related " conditions". Such as , when I developed the syndrome fibromyalgia I also developed rosacia and thyroid trouble. Not saying this is what you have, but fibromyalgia accounts for a lot of unusual symptoms, muscle spasms, pains. My friend s fibro causes a bug crawling feeling on her skin and head and she developed derma-graphics. Don't think your crazy just because a doctor can't put a name on something. I developed fibro before it was even called that, I had doctors tell me I wanted to collect unemployment, I was faking, hell, I was self employed, if I didn't work my kids didn't eat! I'm 65, there was no insurance , if I didn't pay for it! Maybe you just need a good PCP and need to give up on the derms for a minute. I kept looking to orthopedist and neurologists, my gp figured it out and sent me to a rheumatologist same with my friend. Specialists sometimes can't see the forests for the trees. Good luck, GOD bless.

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Thu Jun 26, 2014 10:25 pm      Reply with quote
rmc7 wrote:
Perhaps you have 2 separate but related " conditions". Such as , when I developed the syndrome fibromyalgia I also developed rosacia and thyroid trouble. Not saying this is what you have, but fibromyalgia accounts for a lot of unusual symptoms, muscle spasms, pains. My friend s fibro causes a bug crawling feeling on her skin and head and she developed derma-graphics. Don't think your crazy just because a doctor can't put a name on something. I developed fibro before it was even called that, I had doctors tell me I wanted to collect unemployment, I was faking, hell, I was self employed, if I didn't work my kids didn't eat! I'm 65, there was no insurance , if I didn't pay for it! Maybe you just need a good PCP and need to give up on the derms for a minute. I kept looking to orthopedist and neurologists, my gp figured it out and sent me to a rheumatologist same with my friend. Specialists sometimes can't see the forests for the trees. Good luck, GOD bless.


Thanks.

The neuros I saw disregarded fibro as a possibility, despite my random sharp pains throughout my body.

Any suggestions as to what doctors I can go see? Where can I get a hair analysis done?
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Sat Jun 28, 2014 8:00 am      Reply with quote
You should definitely increase your vitamin D levels -- that is too low -- but low vitamin D does not cause CPK levels to be high. It's hard to figure out why CPK levels can be high, since they can be high for a number of reasons. HTH Smile

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Sat Sep 06, 2014 10:22 am      Reply with quote
Is there any new input from anyone? I haven't found any relief since my last visit here. My mom went to a doctor specializing in Chinese and Western medicine (I was not physically there) and she spoke to the doctor about my symptoms, and the doctor stated his son had the same symptoms as I did (the scarring wasn't mentioned here). The doctor said it is all due to an accumulated overdose of sugars, namely high fructose corn syrup. He said I have to stop consuming anything with this, and that it will take 1-2 years maybe for all the twitching and static/prickly/jumpy sensations to stop. What are everyone's thoughts on this? I've never heard of an explanation as such.

Secondly, before this doctor appeared, I reached out on LymeNet and found 3 Lyme literate doctors in Los Angeles; none of them take insurance, and the cheapest doctor I was able to find required a $650 payment upfront, with fees that will accumulate for lab testing, antibiotics, and follow up visits. Ridiculous. My appointment in on the 23rd but I'm just really unsure what to do right now.

All these twitching sensations have not stopped and the thing that irks me the most is that the sensations are most out of control and consistently present on my face and my scalp. My hair and eyebrows twitch the worst, followed by random zip, zap sensations all over my face. I still have random fasciculations all over my body, but it's not as common now.

A member on RealSelf mentioned some time ago in my thread there that this could be Bartonella, given the indented lines I have all over my knees. But with Bartonella, I've looked and there are usually rashes and what looks like bruising accompanying these lines, and I have none of that. Furthermore, nothing can explain the random scarring on my face; I don't really see lines forming anymore, but now it's more of little dents and divots.

I mentioned in my initial post over a year ago that I was at my breaking point....no one can really understand how I've gotten through the past year. I've seen countless doctors and have gone from the likes of UCLA to USC.

Can anyone be of extra help? Or at least provide some input? Thank you.
MoreScars
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Fri Oct 03, 2014 1:50 pm      Reply with quote
Hi Boafriend. I have exactly the same condition going on with my face. I noticed about 3 years ago I started to get a few random small scars on my face, they look similar to acne scars, but some of them the shape is irregular and could not have been caused by acne. The condition over the last few months has suddenly got a lot worse and I am getting more of these scars although small by the week now and it is really making me depressed. I too have some small pock mark type scars and also they seem to be linking up to each other and connecting in places.

Also one of the depressions is very wide and no way it could have been caused by a spot. I did have some spots as a teenager but had absolutely no scarring from it whatsoever. I am now 42 and I do occasionally get the odd spot, but I have never had cystic type acne or bad acne.

I'm wondering if I have damage to my dermis. I have had some IPL treatments for a some facial veins, which got rid of the veins, I have had about 9 treatments over 3 years and that's when I started to notice the scarring. I havent had an IPL now for at least 2 years but still I am getting more of there indentations. I do wonder if the laser damaged my dermis and now the dermis is collapsing in some way and now all these scars are coming out. You notice the scars more when the light hits them from the side, it it's mainly on my right cheek I have the damage.

The left side isn't so bad, in fact it hardly anything compare to the right side. Also mine are NOT coloured like I saw in your links with AMVC. Mine too are the same colour.

I have started using on old version of the clinique instant perfect or to fill in a few of the holes, I use a cocktail stick to fill the holes with the stuff. It's only temporary fix and I only use it in a few of the deeper pockets marks to help them look softer. The new version of the instant perfect or is rubbish. I was lucky to get an old tube of the old stuff on eBay.

I wouldn't be able to use it everyday as it contains dimithicone which is a silicone by product and that can cause breakouts.

I am too very depressed. I'm also male and take great care in my appearance and this too is making me feel really bad about myself, I am at the minute seeing my complexion going from really nice skin, to someone who has a lot of scarring. The fact it's getting worse now by the week is frightening me to death. I'm very conscious about it. And although the it's not as bad as pics I've looked at people who have had bad acne, I know it is going to end up looking like this at this rate it is accelerating. It did seem not to get any worse for a while but now it's really kicking in. I'm so scared about how I am going to end up looking, as if it gets to the point where I am disfigured, then I don't want to live to be honest. I've been blessed with good looks but this is making me feel really ugly.

I'm glad I have found someone with the same condition after searching for answers although I wouldn't wish this on anyone and so sorry to hear you have this too. I don't have any of the other symptoms you have, but maybe the things are not connected in your case, or if they are, something has caused your facial condition in a different way to how mine has come about. It could be total coincidence with my IPL treatments, but I think the 2 are connected.
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Thu Oct 30, 2014 8:12 am      Reply with quote
MoreScars: Thank you for sharing. I am sorry we are both going through this neverending nightmare.

Anyone have any more help for me? Last I was on here, I talked about possibly going to a lyme doctor (although I doubt I have it...I'm still thinking some some of bacterial/viral issue is at play), but the costs were just ridiculous.

I went ahead and got a hair analysis test done to really find solid info (which blood tests do not provide), and the results were interesting. I have no notable levels of toxic elements, but my zinc was reported to be through the roof. Copper, magnesium, and calcium levels were also very high. Furthermore, strontium was high as well.

Does anyone know if these could mean anything? My parents tried finding a specialist in bacteria/viral infections, but the doctor is so booked that he is no longer accepting any new patients. I am also being pushed to go to a MD psychiatrist by my parents because they think I am paranoid about my issues.

Again, all the symptoms I have written about are still occurring. Notable things to note are that the majority of my prickling/zip zap sensations occur on my head (scalp/hair, anywhere on my face, eyebrows, eyelashes), while throughout my body I have occasional fasciculations and unexplainable cold sweats and sharp pains.

Besides a ridiculous LLD (lyme literate doctor), does anyone know where else I can turn to? I'm done with neurologists, dermatologists, and endocrinologists...I've racked up crazy medical bills and NONE of the doctors I saw provided any help. The only doctor I am occassionally communicating with is an internal/stomach doctor who seems to be the only person listening to me and giving a ------------ about my problems. I want to show my hair analysis report to her for her opinion and suggestions. But again if anyone here could help....please. Please.
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Sat Apr 11, 2015 7:39 pm      Reply with quote
If you have any new information or prevention please let me know. This is happening to me. I woke up a month ago with one on my cheeck and I woke up this mornjng with a new one on my forehead. I literally wake up and they are there. I have no idea what they are or what causes this. I need a cure. I hope they are not permanant. Please help if you know any way to help and prevent them. I am going to try a chemical peel and hope this helps. Thanks
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Sun Jun 07, 2015 8:09 am      Reply with quote
I have the same thing going on Im very scared. It all started after my fungus on my face, i used ketoconazole cream on my forehead and during this the whites of my eyes turned blue..not kidding. And not going away. And slowly I'm getting scars appearing out of nowhere. My nail beds are pale or cloudy. Its weird. I have milia on my face also..i havent had scrapings done yet but ive had blood drawn and everything seemed normal. But i'm wondering if they can see connective tissue diseases in all that..cause i feel like thats whats doing this..idk tho
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Sun Jun 07, 2015 8:15 am      Reply with quote
Also please everyone get checked for connective tissue diseases, because it can cause this I do believe. Like EDS-ehlers danlous syndrome a genetic disease very hard to get tested for. But it can cause this also. I'm thinking that might be it for me cause I have blue sclera, not sure thoough. Also if you have Keratosis pilaris..aka chicken skin. Theere are many different types of it and cause cause atrophic scarring, google it and you'll see what I mean, also did you have any pruitis before the scarring came about? I did red inflamed skin itchy tingly..went away but now my skin is deteriorating. crazy!
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Mon Sep 14, 2015 12:08 am      Reply with quote
Sorry I ended up not getting back with my test results, but the crazy expensive Lyme literate doctor I went to ruled out all tick-born illnesses but from the massive bunch of blood work she had done on me, I basically have a ton of antibodies in my system, have higher than average levels of candida, and have an unknown infection going on detected by ELISA (EBV-VCA and EBV-EBNA). I was prescribe a random medicine to try killing the candida but other than that, I have no idea where to go from here. The doctor says all my twitching and tremors are being caused by these viruses and that these also may have been the cause for my random scarring.

I can't go back to this naturopath though because she charges ridiculous amounts for anything and everything. Anyone have any idea where I should turn to next? I really want to find the root cause of these antibodies and get on a well guided path to healing.
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Wed Sep 16, 2015 7:01 pm      Reply with quote
Even though you had some tests done, you could see a rheumatologist for a more thorough testing for autoimmune disorders.

I think it's more likely that something along those lines is going on than an infection.

BTW- if you have a connective tissue disorder, your lyme test might be positive, but it doens't mean you have lyme, so don't follow the wrong path without seeing a rheumatologist first.

All the prickly feelings, including on your scalp, are most likely from an overexcited or irritated nervous system, and this can come from autoimmune problems, which can also cause the skin to breakdown. good luck

btw- the antibodies should be more something, not just generic antibodies. what are they ?

also, the rhematologist can test to follow up the creatinase situation.
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Wed Sep 16, 2015 7:21 pm      Reply with quote
sar9876 wrote:
Even though you had some tests done, you could see a rheumatologist for a more thorough testing for autoimmune disorders.

I think it's more likely that something along those lines is going on than an infection.

BTW- if you have a connective tissue disorder, your lyme test might be positive, but it doens't mean you have lyme, so don't follow the wrong path without seeing a rheumatologist first.

All the prickly feelings, including on your scalp, are most likely from an overexcited or irritated nervous system, and this can come from autoimmune problems, which can also cause the skin to breakdown. good luck

btw- the antibodies should be more something, not just generic antibodies. what are they ?

also, the rhematologist can test to follow up the creatinase situation.


The bloodwork I had done ruled out all tick infections, but another test the doctor had done found me positive for things such as ANACHOICE (R) SCREEN and CHROMATIN (NUCLEOSOMAL) ANTIBODY. The doctor I saw did tell me this could develop into lupus later on, but there is no certainty.

Would you suggest I find a rhematologist or an immunologist? I honestly don't know where to turn to at this point.
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Sun Sep 20, 2015 11:51 am      Reply with quote
I know you would think an immunologist would deal with this...but they don't. I've seen both.

Rhuematologist deal with autoimmune, which if you have that, is most likely what would be going on. These cause inflammation in the body.

Immunologists deal more with immune deficiencies that cause people to catch rare diseases..severe infections.

See a rheumatologist who specializes in connective tissue disorders..like scleroderma, lupus, etc. google around..
sar9876
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Sun Sep 20, 2015 11:52 am      Reply with quote
Could be UCTD also, google it.

ANA suggests connective tissue disorder..which can cause scarring more as a result of inflammation than anything else.

You could adopt an extreme anti-inflammatory diet to help yourself while you are waiting to find the right medical help. Wear physical sunscreen on your face, lots of fresh vegetables

Personally, I cut out dairy and wheat because they made my skin flare up.

BTW- I have never seen photos on this site, but if you could post of photo of your forehead, for example, I might be able to help
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Sun Sep 20, 2015 3:37 pm      Reply with quote
sar9876 wrote:
I know you would think an immunologist would deal with this...but they don't. I've seen both.

Rhuematologist deal with autoimmune, which if you have that, is most likely what would be going on. These cause inflammation in the body.

Immunologists deal more with immune deficiencies that cause people to catch rare diseases..severe infections.

See a rheumatologist who specializes in connective tissue disorders..like scleroderma, lupus, etc. google around..


Thank you, I have looked around. Still sounds extreme, but I guess we'll only know for sure once I see a rheumotologist. I booked an appt at a hospital already, but will have to wait till 10/27, which is the next earliest availability.

sar9876 wrote:
Could be UCTD also, google it.

ANA suggests connective tissue disorder..which can cause scarring more as a result of inflammation than anything else.

You could adopt an extreme anti-inflammatory diet to help yourself while you are waiting to find the right medical help. Wear physical sunscreen on your face, lots of fresh vegetables

Personally, I cut out dairy and wheat because they made my skin flare up.

BTW- I have never seen photos on this site, but if you could post of photo of your forehead, for example, I might be able to help


Makes sense, since the lyme literate doc I saw said she believes I have had chronic inflammation in my body, which has caused this mess.

Also, I had tried putting pics here a while ago but I think you can only input links.

Image

Image

Image

Image

The forehead line...it's honestly very hard to capture on camera, but is more noticeable in person, hence I do not have a pic here. From the pics above, only the cheek scarring (face down angle pic) and kneecap scarring remain. Some linear scars used to appear out of nowhere and would disappear within a few hours (ex.the leg one). Some stayed for many months before vanishing (ex. the linear cheek one).
sar9876
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Sun Sep 20, 2015 3:55 pm      Reply with quote
hmm..its not linear scleroderma for sure?
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Sun Sep 20, 2015 7:24 pm      Reply with quote
sar9876 wrote:
hmm..its not linear scleroderma for sure?


I'm pretty sure it's not. The forehead line I have honestly looks like a wrinkle (but of course, it's not)- nowhere like the deep indent you see if you Google for linear scleroderma. And I have gone to 5 dermatologists or so over the past 3 years...not a single one has suspected scleroderma. I have had bloodwork done too that has come back negative.
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Mon Sep 21, 2015 3:50 pm      Reply with quote
hmm...the leg line looks liek scleroderma, but I get that the other ones don't


Prob need to see a rheumatologist, not a derm.
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Mon Sep 21, 2015 9:12 pm      Reply with quote
sar9876 wrote:
hmm...the leg line looks liek scleroderma, but I get that the other ones don't


Prob need to see a rheumatologist, not a derm.


Ok, well I have an appt down already so we'll see. What is frustrating is many docs want to see the lines on my knees in person, but sometimes (I guess due to swelling), they are not visible. It's an annoyance, and I have to resort to pics on my phone to show them.
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Sun Dec 13, 2015 5:42 pm      Reply with quote
It's been a while, but thought I'd provide an update. The rheumatologist I saw wasn't able to help. He ruled out lupus, but with further bloodwork, was only able to find that my ANA is still positive. So I have some sort of autoimmune thing goin on inside me, but he was unable to determine or do further testing with it. He tried recommending me take a medication but I don't want to rely on random heavy antibiotics.

I guess I have really come to a standstill with everything. I tried eliminating all sugar, gluten, and grains for 3 weeks to see if my twitching, tremors, and zip zap sensations would stop, but unfortunately no. While sensations did lessen quite a lot at the start, by the 2 week mark, everything was coming back. Scarring wise I don't really notice any new scarring per say, but my face still looks absolutely horrendous, esp under overhead and yellow lighting. My cheeks look puffy and with many scars...

I'm guessing by the dead ness of this thread, there isn't help out there. This really sucks.
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Fri Dec 18, 2015 12:53 pm      Reply with quote
I've had random dents and pock marks unrelated to any acne along with severe hyperpigmentation. The holes started 6 years ago after a minor facial laser and over the years My skin sunk and got holes. The hyperpigmentation has escalated over the past 2 years and I'm sure all the facial creams and bleachers I've used have made everything worse. I feel like there's nothing I can do. My face is very red on each side of my nose, then the holes and brown spots begin as you move towards ears. It's so odd and horrible. I've spent thousands with drs who tell me there's nothing I can do... I was thinking about a chemical peel, but now am concerned that may not be best...also with stem cell concentrated fat grafts. Any thoughts?
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Sun Oct 02, 2016 2:02 am      Reply with quote
boafriend wrote:
It's been a while, but thought I'd provide an update. The rheumatologist I saw wasn't able to help. He ruled out lupus, but with further bloodwork, was only able to find that my ANA is still positive. So I have some sort of autoimmune thing goin on inside me, but he was unable to determine or do further testing with it. He tried recommending me take a medication but I don't want to rely on random heavy antibiotics.

I guess I have really come to a standstill with everything. I tried eliminating all sugar, gluten, and grains for 3 weeks to see if my twitching, tremors, and zip zap sensations would stop, but unfortunately no. While sensations did lessen quite a lot at the start, by the 2 week mark, everything was coming back. Scarring wise I don't really notice any new scarring per say, but my face still looks absolutely horrendous, esp under overhead and yellow lighting. My cheeks look puffy and with many scars...

I'm guessing by the dead ness of this thread, there isn't help out there. This really sucks.


I've been lurking around this site for many years now. I had to post because your story tore at my heart strings. I could sense the sadness and dispair in your writing. I know all too well what it's like to search for answers and be dismissed by doctors; to go from Doctor to Doctor and not get any better; to have many blood tests and diagnostic tests done to no avail; to have hope and then have that hope ripped away from me. Believe me there are people out there who know your pain. Who don't think your vain or crazy...

I know that you haven't posted here in quite some time, but I was wondering how you're doing? I read the whole thread and it was very interesting. I was hoping that there would be a happy ending. I, also have an autoimmune condition and I wanted to see what treatment you have undergone, if any. I have managed to get my immune system functioning properly without the use of methotrexate or other harmful medicines. The only issue was that I developed two other problems before getting better. After reading your story, I'm worried about you because you aren't treating the underlying problem. One autoimmune disease often leads to many others. Like you mentioned, finding the root cause is the key.

Hopefully, you will come back and update us. I hope you (and all of the other people who commented and said they have the same symptoms) are better now.

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Thu Oct 13, 2016 2:42 am      Reply with quote
Hi Yola, Im thinking its an immune issue as well, takes time to balance what is not been in alignment for a while. Can I ask if you had the same skin issue? you mentioned that there was a few things that happened health wise till your immune system was corrected. I also think Histamine Intolerance might also be what is aggravating these skin conditions, causing inflammation, which again goes back to a compromised immune system. Glad things worked out for you and your health is in optimal peak Smile I will also Re-post some information in hopes it helps others with their health.
Jesus Bless you and all those struggling, health truly is the key, we dont realise how blessed we are till it knocks on our door, but knowledge is power, and we can use it to turn all things around Smile
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