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I'm Looking For Others With Hidradenitis Suppurativa.

I'm Looking For Others With Hidradenitis Suppurativa.

Hello I'm new here and looking for others who may share my diagnosis of Hidradenitis Suppurativa (HS) it is a chronic skin disease that effects the sweat glands and causes boil like leasions there can be extensive tunneling from one to another it is a horrible debilitating PAINFUL disease. I have had HS since I was 15yrs old I am now 56. I have had so many I&Ds I can't even begin to guess how many over the years. I have had several years of surgerys and I have had 3 surgerys that required me to… read more

posted June 13, 2018
A MyChronicPainTeam Member

No way @A MyChronicPainTeam Member! I worked in a hospital lab way out in Alaska years ago and got HS from having a jump in patient population with MRSA+ HS. I had it, luckily, only under my right arm (deep, though) from all the immunosuppressive meds I was on. They removed the cellulitis several times, and eventually, a major lymph node - but didn't do the skin graft.. Therefore, I broke out for 5 years! It's not fun.
However, I did find treating my nasal passages (and everyone in my house) with a topical antibiotic cream helped. Oral antibiotics can wreak your sysyem, too. I started taking a ridiculously expensive probiotic (Visbiome) > a year ago. Knock on wood, but I haven't had any break outs. Also, I ordered Staph epidermitis (the kind that is supposed to live on your skin) from an at home science learning company and mixed it with lotion and rubbed it right up to the site, but not on any broken skin. I think that helped, too. I use free and clear soaps, detergents, fabric softners, and all that. I keep the area dry and cover the break outs with colloidal silver right off the bat for several days. I also drank colloidal silver solution every day for ~90 days. Crazy, huh? I would have done anything! I hope you can get some relief from it . It's a pain, for sure. We didn't know at 1st that it was spread from the nasal secretions.
Good luck. I know it's horrifying, embarrassing, and humbling. Just keep trying and asking questions to your care givers. See if you can get Lidoderm patches to go right up to the sores. It helps some, too.

posted June 20, 2018

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