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Significant other of HS sufferer.

Posted , 5 users are following.

tracy036912
tracy036912

Hello! I came here to get some info from people who suffer from HS. My boyfriend had it really bad. We’ve known each other since we were 11 and I’ve seen his condition worsen over the years. We’re 25 now and there are days when he can barely walk. It breaks my heart but I still have hope that there’s got to be something that can help him. That’s why I’m here. He’s done multiple antibiotic treatments, several autoimmune meds etc.... nothing works. For the past 4-5 years he’s been getting special infusions that did help at first but now he’s built up such a tolerance to them that they barely help at all now. He’s spoken to his doctors about surgery. From everything I’ve read it seems to be his best bet. If any of you have had the surgery please reply and let me know how it went, if it helped, and how long it helped you. If you’ve discovered something else that’s helped like diet changes, vitamins, or any other lifestyle change please share. I’d like to know if there’s anything we haven’t tried that may help. Thank you. 

0 likes, 3 replies

3 Replies

  • LilBam17
    LilBam17 tracy036912

    Posted

    What a sweet person you are! You’re a lovely person to be proactive in helping find something to help your boyfriend. It’s a terrible disease and makes the victim feel very helpless. To know there is someone going to bat for them is huge. Kudos to you!

    I’ve been suffering from this disease for many years. 16 is when I started noticing and I’m 27 now. I’ve tried tons of things but not enough or I would have found a cure! Lol! I tried antibiotics which did work......for a month and now doesn’t do anything. I tried CBD oil that worked for a month.....now doesn’t do anything. I’ve had golf ball sized boils in my armpits, groin and breast area. When it started moving to my face I freaked out and said enough is enough!!! I’m done living in pain and not feeling beautiful. I wanna wear short sleeved shirts dammit! Lol. 

    With that being said, does your boyfriend smoke? If he does. Tell him to cut back half of what he smokes. Just try it for 2 weeks!!!!! I smoke and I went from a pack a day to 4 smokes a day (gonna quit 1/1/18 but am weaning myself off) and I’ve seen a world of difference. The one night I smoked more than I was used to (went from my daily 5 to a pack in one night) I had HUGE boils the next day. But they went away so quick because I didn’t smoke at all that following day. 

    If he doesn’t smoke.....I’ve heard he needs to do an elimination diet. This is an autoimmune disease which a lot of diet changes can fix.  I’ve personally not done one yet as I am quitting smoking first. One thing at a time. After not smoking I will do an elimination diet if I see flare ups. I will definitely keep updating as I go. 

    Lastly, I know how stinky, embarrassing, horrible this disease is. You feel ugly and deformed. Thank God he’s a man and doesn’t have to conform or feel pressured to the norm of shaving. I’m a girl and haven’t been able to shave my armpits or other areas in fear of breakouts or cutting my open wounds for months!!! I joke with my husband that he married a French girl!! Lol!!!! Hopefully not for much longer. 

    Good luck to you and your boyfriend. Keep supporting him and hopefully some day we all can collectively find a cure. 

  • Debbon
    Debbon tracy036912

    Posted

    My daughter has hs she got tested for vitamins and minerals and it showed she was dairy intolerance and her magnesium was very low. So since addressing these she takes pro biotics she's in remmision hope this helps.

  • barbara91275
    barbara91275 tracy036912

    Posted

    Hi,

    It started when I was 14, so 24 years ago.

    I started smoking at 14, so.... maybe that's a trigger.

    I noticed that chocolate is a trigger.

    I'm using cbd oil, for a week now, huge difference.

    I use iodine or iodine soap, makes a huge difference, sometimes they disappear, sometimes they burst open. But too much iodine is bad for your tiroid, it can get too fast.

    And baby diaper cream, it has zinc and helps me a lot too. But kinda messy.

    I also use magnesium supplements.

    Zinc supplements.

    And L-Carnitine, and I believe this helps the HS to become less.

    Hugs and good luck 😊

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