hidradenitis suppurativa ... what works for you? (pain, infected, skin, surgery) - Health and Wellness -Doctors, illness, diseases, nutrition, sleep, stress, diet, hospitals, medicine, cancer, heart disease - City-Data Forum

teebopop · 02-09-2008, 04:25 PM

I have bilateral axial hidradenitis suppurativa. I've had it for 10 years. Nothing works for me and my doctor does not want to continue antibiotics long term (he's afraid I'll build up a tolerance and should the time come when I need antibiotics for something else, I'll be done for).

What works for you?

If you don't want to post publicly (this is not for the squeamish) please PM me.

I don't think I can take this much longer. Surgery has been recommended but the odds of it working are only 50-50. Plus there's a possibility that I could end up with "frozen arm," which means that I'll never be able to lift my arms again as scar tissue will form that will seal the skin so that I have no arm movements.

Any information on things that you've tried that have actually worked is greatly appreciated.

Niners fan · 02-09-2008, 06:02 PM

Have you tried using Colloidal Silver topically? Silver has antibiotic properties and might help. You should be able to get it at any health food store. There are two types - a silver protein and electro-colloidal. In my experience, the electro-colloidal might be more effective topically than the protein.

Also, according to Wikipedia, taking Zinc Gluconate orally might be help.

teebopop · 02-09-2008, 06:08 PM

Niners Fan:

I've not tried it. But I will now. Thanks for responding. I'll also check out the Wiki as well. I never even thought to look there and I use Wiki all the time!

Niners fan · 02-09-2008, 10:41 PM

As someone who also has some chronic health problems (though different from yours) I wish you luck. I am not the type to shun conventional medicine, but I have found that health foods / alternative medicine has been helpful for me, especially when doctors don't have a good answer.

I hope you will post your results with Colloidal Silver (good or bad) as I would be interested in hearing.

lilypad · 02-10-2008, 09:17 AM

I tried Tetrasil once for rash from shaving underarms and worked well. I know your problem is much deeper skin condition, but might be worth a try.

Home: Aidance Skincare All-Natural Products with tetraSILVER Silver Oxide

anmer · 02-11-2008, 03:39 PM

Hello,
I too suffer from HS. I more into alternative and natural therapies rather than antibiotics or surgery to remove the affected area.
I apply aloe vera gel from Aloe Life to soothe the pain. It does not make the boils disappear - but definitely relieves the pain very very much. I'm also on a detox plan involving aloe vera and herbs and avoiding certain foods. Just trying to see if that can help with this horrible condition.
Some people have found good results with applying pure tea tree oil to the lesions. Hope that helps.
Good luck.

kimbrooke · 10-19-2008, 10:18 AM

Hi,

After cutting myself off from the world to deal with this condition for three and a half years I decided to look on the internet recently to see if anyone else is suffering from this and have been blown away by the number of sites, forums etc dedicated to it, nearly 200,000 on one search alone. I've written my story in a new blog. Have a look at [mod] no posting your personal sites [/mod]Best wishes,
Kim.

Quote:

Originally Posted by teebopop

I have bilateral axial hidradenitis suppurativa. I've had it for 10 years. Nothing works for me and my doctor does not want to continue antibiotics long term (he's afraid I'll build up a tolerance and should the time come when I need antibiotics for something else, I'll be done for).

What works for you?

If you don't want to post publicly (this is not for the squeamish) please PM me.

I don't think I can take this much longer. Surgery has been recommended but the odds of it working are only 50-50. Plus there's a possibility that I could end up with "frozen arm," which means that I'll never be able to lift my arms again as scar tissue will form that will seal the skin so that I have no arm movements.

Any information on things that you've tried that have actually worked is greatly appreciated.

tati18328 · 02-12-2009, 10:23 PM

I now have a name for this terrible thing that happens quite often to me. What I have been using for years now is plain old Foot Powder that my husband uses on his feet. I was desperate one day and I put it under my arms and within a couple of days the inflammation went down and no more pain or lump. Now the minute I feel a lump starting, I start putting the powder on the infected area and the lumps goes away before it starts. I usually go to the Family Dollar store and purchase several bottles of Foot Powder or you can also get Dr. Scholls foot power, so I have it on hand and it works everytime. I hope this will help you.
[SIZE=3] [/SIZE]

acr123 · 05-31-2009, 03:58 PM

i too have this and have been on keflex 500 mg 4 tabs 4 times a day for 1 month straight and then one month off then repeate this for the last year . i had no choice but to take the high amounts of antibio. cause nothing works till just for the last two months i have been off the antibiotics and replaced them with using the aleo vera plant every day pretty much usually at night or any free time at home.it will itch still but nothing like before .
i have suffer for about 2 and a half years only and wish for the day they will stop so i can function proper.
please dont drink alochol at all !!! its a killer on hs ... i think dairy is a problem too but i still eat it moderate... i drink coffee but de cafe soda like sprite. and i still smoke cigs.
i was wondering the person who uses the foot powder were you ever diagnosed with hs and have you had reacuring multiable golf ball sized ones...thanks for the info.
so i use the aloe vera med. plant like a patty remove the thorn and leaf then rub the juices on and let the patty sit there ...i have it under the arms and one in the groin......any ways ..hope this helps it has for me i just hope it will keep working and i wont have to go back to the antibiotics , some times i think i have too then i use the plant and feel better so i will see how long i can keep with this..bye for now..

grimsby · 06-10-2009, 06:37 PM

I've known about my hs for about four years now (30 year old male. Smoked cigarettes from 18-28). Not coincidentally, I've been single about that long, too. Quite depressing. Tried everything. Nothing worked, I thought I must have done something earlier in life to make me deserve this. I was hopelessly sad...

Until I stumbled across something in Walgreens called AcneFree. It came in an orange box. Bout $20. Has cut down my bumps about 70%. Comes in three bottles you apply to your skin after a shower.

Also, if you can, from time to time, "bake yourself" in tea tree oil. Get naked, apply it to where you need to, then wrap up in a bathrobe. You'll know when to put clothes on.

I never said these were cures (ain't a doctor anyway!). I just know these things have brought ME enough comfort and peace of mind to go dating again, and to go through the day, for the most part, pain free.

What a dreadful disease. Forums like this are very helpful to me, and I appreciate them so much to share this information with you. I truly hope it helps you like it did me. I'll let you know if there's any changes.

Love Yall, Good Luck...

Grimsby