Wellness

[Nonametoday]

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@novamc1 wrote:

This link might interest some who want to know more about results of studies on this illness.  Also, it might provide info about federally-funded clinical trials that some patients might be able to enroll in.

https://clinicaltrials.gov/ct2/results?cond=%22hidradenitis+suppurativa%22+OR+%22acne+inversa%22

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@novamc1  I tested for this at one time but did not qualify because I had 1/3 immunoglobulins on the low range but not low enough while the other two were very low.  I aged out according to my dermatologist earlier in the year but now my neurologist wants to see if I an get it for another autoimmune disease that I have since, now all three have recently turned very low.  So, I guess we will see how it treats HS as well.

[I am still oxox]

I recently saw an immunologist for my immune issues and she thinks there maybe be a connection between CVID and the Hidradenitis

[Nonametoday]

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@I am still oxox wrote:

I recently saw an immunologist for my immune issues and she thinks there maybe be a connection between CVID and the Hidradenitis

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@I am still oxox I had no idea.  My immunologist does not even know I have hidradenitis.  I just put on my medication list that I take doxycyline (now, same drug) and I think he assumed it was for my lungs since I have so much respiratory infection.  I need to tell him when I return.  I never told him why all the scarring on my face but I did tell him one of the reasons they wanted me to have immune testing was because I had shingles (by biopsy) on my face 3 times and they tested me for HIV twice, because I have cadaveric bone grafting and although the chances of that are low, it has happened.  But I was negative both times, PTL.

[twinkies]

Have you ever tried taking Black seed oil?[Or Nigella Sativa]I think i f you try taking !/2 teaspoon 2 x a day that this could help you .It s can help people who have carbuncles and  small cysts . It can help Rheumatoid Arthritis and inflammatory diseases as well as acne ,Psoriasis and eczema . You canalso apply with a q tip to the infected area . Black seed oil can lower blood pressure and also regulate blood sugar , I take the capsules because I have Rheumatoid Arthritis and psoriasis and  it also gives me energy . I take the capsules 2 a day . Do not take more than 2 teaspoons a day . Start with 1 teaspoon a day . Its helping my psoriasis and my arthritis . ? It can also help those with digestive problems . It can cause a small amount of constipation . Just don't take over 2 teas a day . It can be very helpful . I take Health harmony  black seed

capsules and sometimes I rub the liquid directly on my skin . It is a great moisturizer and I must tell you it sinks in pretty fast . It has a slight spicy smell but it is just very faint.In the liqudi I use the  Blessed Seed Brand . I paid about 28 dollars for 3.3 oz. I paid about 30 dollars for the capsules on amazon. The  brand  was Health Home brand . THis product also helps me sleep . My husband started taking it and said the capsules are helping his Osteo Arthritis . You can look up Nigella Sativa  and get a lot of info on it .

 cathy from ma

[lenapecci]

I have had this since I was 23. I was not diagnosed until my late 40's.

Up until the diagnosis it was surgery after surgery. No one knew what it was.

I truly felt like a freak of nature.

My GYN after my diagnosis helped me find a dermatologist who treats HS patients.

She is in San Diego. She is truly my angel. I am on sprionlactone and doxyclone. I also get injections every 6 months. She also suggested I follow the low glycemic diet, which I do.

Since seeing this doctor I have had only 1 flare up.

I live across the country now, but I still see her.

I hope you find the answer or doctor who can get you relief and for the flares to stop or slow down.