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Hailey-Hailey Disease
I have a painful and itchy hereditary skin disease known as Hailey-Hailey. I am 78 years old and it has gotten much worse as I age. Before I fell twice in the last few months I was seeing my dermatologist every two months; now I talk to him on the phone or leave a message about my condition and prescription needs. The worst place on my body is between my legs and behind, causing horrible pain when I sit or try to get in and out of a car. I have the blisters, whelps, crusting, raw skin, and bleeding over much of my body and everything (clothing, bedding) hurts my body. Have had the disease in between legs/behind for 18 months; it gets a little better, then worse again and when urine touches it, I sometimes cry or almost scream. Do any of you or someone you know have HH?
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It sounds like you’ve had good results with the natural medicine, can you share what it is? I hope that you heal soon!! Thank you
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3 ReactionsLow dose Naltrexone. I take 4.5mg daily. It has to be made in a compounding pharmacy as standard dose available commercially is 50 mg.
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1 ReactionLDN Low dose Naltrexone. I take 4.5mg daily. It has to be made in a compounding pharmacy as standard dose available commercially is 50 mg.
I have not been able to find any info on Kolcha13. Where do you get it?
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1 ReactionYes, i got it fer om compound pharmacy, but my doctor prescribed me 1g daily.
About kolcha13 i found it in Amazon, as i mentioned it works for my niece, she was diagnosed with psoriasis in other country, which i think is incorrect because she has similar symptoms that we, siblings have. I took 3 on my worst day of crisis, and next day i was dry. My sister tried glutathione which i ordered already. She told me in a week she was healed. I try to do everything that i heard is good. Because this is painful. My doctor yesterday took a sample to check if there is herpes because the acute pain. And to check if doxicyclyne is still working. I used to take it for almost two years, twice every day, which made me think I'm resistant or my body is. I told that to my doctor, and she mentioned is a valid doubt.
I hope you are doing well
Hello, the lab of kolcha 13 is Seven Forest. I’m taking prednisone caps, and she prescribed triamcinolone acetonide cream. I’m getting better
Now the lab results mentioned there is pseudomona aeriginosa, then I think they are going to change the antibiotic. There is a green secretion in my underwear, and I mentioned it to the doctor. They act super slow, the test was done two weeks after I mentioned that.
Hello,
I found a researchers group who found some results about HHD in a multi study of cases. I offered myself as a volunteer to provide more information about this illness for future studies.
Maybe you can add yourselves and write to them to see if we can find an open door to start a continuation study. This, HHD is a weird and orphan illness and the number of cases is low in incidence, but we are together and they can continue with studies to find an effective treatment.
Is in Germany, this is the contact information, please write, and describe your symptoms, attach a picture and show your interest in participating.
Thanks
Ángela.
Klinik für Dermatologie, Allergologie und Venerologie
Haus B 9, Ratzeburger Allee 160, 23538 Lübeck
Tel.: 0451 500-41550, Fax -41554
And their email address is:
ambulanz.hautklinik.luebeck @uksh.de