Posted , 7 users are following.
Apologises for the hair. I think my LS is flairing up & most of my labia is fused. can anyone tell me how bad this is comparatively. I'm 39 and was diagnosed 3 years ago. I'm worried its progressing too rapidly.
i I havent tried baking soda, as im worried it will be an irritant & borax is out if the question as im UK based. Please help!
0 likes, 35 replies
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sarb73328 mic22234
Posted
Mic - I am in UK and you can get Borax online. I get mine on Amazon or Ebay and its cheap. Make sure you get Borax Sodium Tetraborate. Mine came from a company called Pure and More. In my opinion its well worth using as it softens the skin and soothes. Obviously keep up the steroid though. I am no doctor but your LS doesn't look bad to me.
Guest mic22234
Posted
Hi Mic,
Hey, no worries on the hair.... Hair is protective and hair-based skin is way different than non-hair skin.
You can't get borax in the UK? Wonder why? It's sold here in the US as a laundry detergent booster (there's no detergent in it). It did not help me but I really didn't give it much of a chance. Do you have pain? Take a cup of water (about 190 milliliters) and put a teaspoon (don't know what that is in the UK) of baking soda in the water. Stir until dissolved. That's a weak solution and I really doubt it will hurt. Likely won't feel anything.
This issue with LS is that the condition takes years to make itself known. What took years to show up does not go away in a month. It was hard for me to accept that s whatever I've had is generally gone in a month anyway.
What skin moisturizer are you using? If none, start with coconut oil. Organic if you can get it but buy the regular if nothing else available. Best wishes,, biscuit
sarb73328 Guest
Posted
Eggbiscuit - Borax is banned in UK because it is deemed carcinogenic!! There's an irony! I told my GP I was using it and she didn't disapprove, telling me it was what was put in baths in hospitals for mums after childbirth to aid healing.
Nancy_K_B sarb73328
Posted
TOTALLY cool report from your GP, Sarb! thanks
Guest sarb73328
Posted
Sarb,
Wow! Carcinogenic?? I will have to look that up. Thus far I have not seen any reports of that in the medical journals. Sounds like some drug company does n't want people treating themselves? Thanks for the info....
sarb73328 Guest
Posted
Eggbiscuit. As I understand it, borax is used in a children's 'goo ' (stretchy play dough stuff) and found to be causing problems (I dont know what exactly).
mic22234 Guest
Posted
I use hydromol to wash and an intestive to mositurise, I also ise an emoilent as a barrier cream when needed.
Nancy_K_B sarb73328
Posted
Sarb that interested me so I looked it up... articles seem to like to start with severe fear and worry sentences.. and THEN go on to say....
Borax can also cause skin, eye or respiratory irritation. In rare cases, prolonged exposure can cause infertility or damage to an unborn child. **Now, the amount of Borax used in most homemade slime recipes is small **(usually about a tablespoon, which is a little more than 14 grams) and it is diluted in water and glue.Mar 21, 2017
Is homemade slime safe? | Children's Hospital of Wisconsin
and of course WE use a pittance in a whole tub of water. ... and our bodies REQUIRE boron/borax as part of our biochemical make up.
the best article i read some years ago from a biochemist was to explain that borax has even less toxicity level than common table SALT!
so you see, it is all a matter o DEGREE.
sarb73328 Nancy_K_B
Posted
Nancy, I agree - it is all about the amount we use. However I do use it daily as a swab and a couple of times a week in sitz bath (about a tablespoon in that). No idea if that's risky, but I know it helps and after all we are all using steroid which has implications too.
Nancy_K_B sarb73328
Posted
HI sarb, what stood out to me in that quote was the word "irritation". irritation does not mean poison risk to me, it means the same as showering off after swimming in the sea... salt water is itchy.
Ah, I'm one of those who have never used a steroid, yet. But i"m very interested in - who said ?- that their doctor told them that tacrolimus is better to be used over long term than clobesetol.
sarb73328 Nancy_K_B
Posted
Nancy - can I ask why you have not used steroids?
sarb73328 Nancy_K_B
Posted
Nancy - also tacrolimus is used to stop immune systems rejecting a transplant. Sounds a little drastic for LS but i take your point - it is interesting. Does it 'shut down' an auto-immune response? If so why is it not prescribed more for LS and other AI diseases?
Nancy_K_B sarb73328
Posted
ah, hi, Sarb... well it started out simply that I couldn't afford the $180 price tag. I've changed medicare to United Health type Medicare and maybe they will take now... but in the mean time I've found that my vitamin and mineral protocol for building health is taking care of things.
YEp, I've got fusing... but apparently all you ladies have been mentioning that fusing happens regardless of whether one uses steroids.
also listened carefully and read back some years to notice that a fairly large number of women have mentioned that the steroid burned and they couldn't use it, so there must be quite a few people who never use it and I didn't feel so bad about not having the $.
We are also told that steroids thin the skin... so every time I hear of some of the younger women here talking about thin skin and painful tearing it hurts my heart to know that they are believing their doctors blindly without putting two and two together. That's not to say I wouldn't try it at some point argh - probably more than you wanted to hear... smiles
Nancy_K_B sarb73328
Posted
OH now you've gone beyond my capacity to grok human biology etc. smiles.
but or your last question, you know the answer.. Docs just like everyone get set in their ways.
I don't know how long you've been on here, but I've seen quite a few women on here use tacrolimus instead. but yesterday was the first time someone told us of her docs telling her WHY.... a life time of needing it for a chornic disease and it is less thinning to the skin etc...
Guest sarb73328
Posted
Tacrolimus (Protopic in the US) is a calcineurin inhibitor that mediates out of control T-cells (white cells of the immune system). Sometimes our white cells go after our own tissue which is the case in autoimmunity. Some who have a bad skin reaction to the clobetasol are then put on a course of tac twice/day for 6-8 weeks to stop the bodies' overreaction to the steroid. It's like the game Whack A Mole. Get one problem pounded down and six more spring up.
biscuit
Nancy_K_B Guest
Posted
oh! Biscuit - thanks for teaching us about Tacrolimus + Protopic.
How are you feeling today by the way, sore throat?
I was watching a youTube video yesterdy from a dermtologist in Australia who goes een further to say that even tacrolimus is too strong for the long haul. that over the counter corticosteroid has been working well in her practice. It's worth a good listen whean anyone has time.. BUT I don't know how to gt the link to you all without being deleted - yet I'll figure something out.
Guest Nancy_K_B
Posted
Got tonsillitis, Five days with fever is not fun. Saw two docs. "Well, we don't know....." Roommate brought it home last week. We're both sick. Taking D!
Some people will have to take tacrolimus all their lives if they've received a transplanted organ.
As far as the no link policy, why do you tell us the person's name, the country, approximately what/who she is and we should able to find it. Hope you're well. biscuit
Wee_Dugie Nancy_K_B
Posted
Nancy nice to 'speak again, thanks again for all the work you do trying to help all on here with LS and associated stuff!
Anyway, the way I get around web addresses is this: for an individual you can PM / Message, obviously.
However, I take the approach that I want all readers of the Forum Topic, current and future to be able to access the specific web page.
For this I specify search terms so that any one using our google friends can search and get to the page we want them to. I will use a specific example here - so say I wanted you to see an academic article specific to Male LS, but I don't want to use the web address as It may become deleted during Moderation.
So I look at who the web address provider is, the title at the top of the web page, and anything that will make it specific to that page, such as the person who wrote it. You can do this with any web address, pick out the things that identify the location and the topic of the page, then TRY collecting the intended search terms and do the initial search on google yourself to see if it links to the intended page. I use a particular format, or text layout, so here is my specific example:
.
.... try it see if it works, perfect your own search terms for whatever web page you want to highlight and do the test search yourself.
.
Yes it is a roundabout way of getting the information across that we want, but it is better than it being automatically deleted. Then, as I stated previously as a tip, copy the entire message before you hit the "Post Reply" button so that you have at least a copy of the content of the text you have diligently typed, again, in case your message is deleted or goes to some protracted Moderation process. I do this for ALL the forum posts when I have had to give a detailed carefully considered response!!