Hey Tiny, I have actually heard that radiation does work, but not for everyone. Just like any other treatment for HS. What might work for one doesn't necessarily work for another. Congratulations on getting married I hope the one on your rear end clears up in time. Welcome to the group!!!!

Hi tinybuttons! Welcome to our group!
Ok, here is what I know about Vitamin A. Vitamin A itself is not the reccomended course of treatment for HS, however Oral retinoids (vitamin A derivatives) for 6 to 12 months, especially isotretinoin, which are very effective for acne, may help HS.. there have been documented cases that HS actually improved during treatment. However it should be noted that not all patients treated with the Oral retinoids showed improvement, some had no signifigant change in their HS either good or bad. You can get Vitamin A toxcity, so be careful if you venture out and try it on your own.
Also, Vitamin E seems to have helpful benefits to many HS sufferers, they report that by simply cutting open a capsule and putting the Vit. E liquid directly on the open area that they are getting good results with healing.
I hope you find a treatment that helps you be flare free for your upcoming wedding!!

I tried turmeric but it caused me to bleed. I started my period and it made it worse. For me turmeric didn't work just caused other things to go wrong.

Tumeric is a type of blood thinner. If it caused you to bleed you might want to tell your doctor this happened because there are many different reasons that this might have happened to you.. a Vitamin K dificiency is just one. Also people with Auto-immune diseases, as HS has been reported to be, often causes people to react more severely to blood thinning products, such as the Tumeric. Even a simple infection can cause you to react more severely to the blood thinning agents in Tumeric, but I would still suggest talking to your doctor and finding out what caused you to so readily bleed.
While Tumeric did not help me with my HS either, fortunately it did not cause anything else to go wrong.. I just gave up hope on it after 4 months with no noticable improvement.
I sincerely hope that you find something that will help ease your HS.
Hugs!

I bought the powder form of tumeric, and I don't think I would be able to take it cause of the bleeding problems. I have HBP and I take meds for it. Like Peekaboo said I think I may have the problems with the period too. I bleed alot anyway during that time. Does it work if I turn it into a paste and apply it like a salve? I usually use epsom salt like a paste, and that works really well.

My daughter has been suffering with HS for about 5 years now under her armpits and right breast. It started when she was 11. She had surgery to remove two flared sites under her right arm, and three under her left. After that her doctor prescribed Doxycycline twice a day, and she was flare free for 2 years.

She began forgetting to take the medication at times and would wind up taking the meds once a day, or once every other day with no flare ups. When we told the doctor this, he assumed she may have been "growing out" of HS. This made me feel wonderful.......until I started doing research on it and found out that once you have it, you always have it. :-(

Since then the HS has spread to her inner thighs and buttocks. She had one large tennis ball sized boil to be opened and drained in February, and it seems the HS has been spreading ever since. I was really upset about it too, because after my insurance kicked in, I received a bill from the doctor for almost $200, just for that visit.

I have been praying and praying and believing God that my daughter will be healed and cured. He is going to heal her and I refuse to believe otherwise. She is currently on Clindamycin 2xs a day; however, because of what I have been reading about Turmeric, I have decided to try it.

I am currently logging her Turmeric intake each day to see if it is helping. This is the second website I've come across that has mentioned Turmeric as a seemingly successful treatment for HS. So at this point, I am willing to try anything that will provide relief from the pain and flare ups associated with HS.

I started her on two 500mg capsules on Wednesday and Thursday. Then Friday and Saturday, four capsules (2 @ am and 2 @ pm). Yesterday (Saturday) she had another tennis ball sized boil on her inner thigh,

I took some Turmeric that I bought from an international market in my neighborhood, some water, and a little olive oil, and spread it on the site with a plastic knife. This morning when she went to the bathroom, the boil had ruptured. I was in shock! It took a little less than 24 hours for this to happen, but I'm relieved that we didnt' have to see the doctor this time for it. Not only did that save me another $200, but it gave her a little relief.

The sites under her arms are constantly open and draining. Since she's been taking the Clindamycin, she's noticed that they are not draining quite as much, but she has had NO relief from the pain.

I'm praying that my daughter can experience some pain relief because it's very hard as a mother to watch my child constantly discouraged, frustrated, depressed and crying and there is nothing I can do. It makes you feel so helpless, and I refuse to accept that HS will choke her quality of life.

I will come back to this forum every week with an update on how she is doing, because I am praying that the God given Turmeric will be of aid to her.

Praying that all who are in this struggle will find strength and encouragement, and not let HS win!

Lovemydaughter,

Thank you for the post and the information. Here is to wishing your daughter the best, and you somewhat less stress.

I would recommend a couple of changes. First reduce the Turmeric to no more that 1000mg per day (2/500mg caps). Turmeric can be tough on the stomach and may cause some gastro-distress. I would also suggest adding 50mg of Zinc to help the skin healing. Zinc is very powerful and helps to keep the skin healthy.

Also, be patient, it can take 10-12 weeks to see much of a change with the turmeric. 6 months or more to see real changes.

Since I do not know you or your daughter I have a couple of cautions for you. If she is obese (more than 20lb over ideal weight) and has started menses, she needs to be cautious with the antibiotics, especially doxy... and minocycline. Chronic long term use of these anits have been known to cause Psuedo Tumor Cerebri, (PTC)

Over the last couple of years we have had several women with HS who were using those medications develop PTC. See the attached link.

http://www.ninds.nih.gov/disorders/pseudotumorcerebri/pseudotumorcerebri.htm

Using these anti's for short term use can be very effective for infections. However, HS in and of itself will culture negative. Unless there is a secondary infection, the Anits may not be very effective. The Clyndamycine may be more effective as a topical lotion

You might also find it very helpful to go to
http://www.hs-usa.org/forumdisplay_forum_topics.asp?ForumID=6

Here we have compiled a list of things that can help HS. This list is a list from actual HS patients over a period of several years.

Lastly, If you have health insurance, please have your Doctor do a complete Androgen and Hormone work up on your daughter. While not clearly understood, there is a definite correlation with HS and Androgen / Hormone imbalances. I would also recommend that they also run a Thyroid work up as well. The Thyroid is responsible for a number of hormones in the body and hypothyroidism can cause symptomology very much like HS.

Keep us posted
Best wishes
Rick H.

Rick,

Thank you so much for your reply.

My daughter is 16 years old and African American. She is not overweight, although she WAS before the HS started. She went through the "chubby" stage and then began to get taller and thinner.

What I did forget to add is that I have been suffering with an extremely mild case of HS for 19 years. I have one site under my right breast that over the years has flared up annually. About every 18 months to two years, I have a flare up at the base of my belly (top of groin).

I have recently found that as long as I wash with Safeguard soap, I am okay.

So I also started her on Safeguard.

I asked the doctor if he knew of any natural treatments she could take, because I refuse to have her taking Rx meds for the rest of her life, especially antibiotics. His answer was "none that have been proven". He didn't even TRY to suggest anything that he even HEARD of that may work that was natural.

I will definitely ask the doctor to do an Androgen and Hormone test on her, as well as a Thyroid test.

This has been so draining, but my faith in Jesus has not been shaken one bit. I have even at times asked that He give me the suffering, and let her be free of this pain, but I know that she is going through this for a reason, and a season, and I don't care what the books or the doctor says, she will be healed from this.

In the meantime, I am going to take your advice and get the workups done.

For the two and a half days that she's been taking 2000mgs of Turmeric a day, she hasn't complained of any stomach or bowel issues. She seems to be tolerating it well. However, what if I scale it down to 1500mgs? Her case seems to be progressing pretty quickly, that's why I figured that attacking it with 2000mgs a day for a period of time would help. I'm just desperate for her to be okay.
I have no problem waiting to see if the Turmeric will work, I am just praying it does. I want to see her out of pain more than anything though.

For the boil on her inner thigh to rupture is a HUGE breakthrough though. That whole area was keeping her from even walking. Now, although she's sore, she's not in as much pain in that area as she was before. Now, if we can only get the pain in her armpits to subside..........................

Thanks again so much for replying.

Update 10/25/10

Last night, my daughter had a huge lump under her arm that was surrounded by about 3 open wounds. I was reluctant to put anything on it because of the open wounds, but it was causing her a great deal of pain.

So again, I made a thick paste of Turmeric, water and Olive Oil and placed it directly on the large boil under her arm. To keep it from spreading to the open wounds, I placed two small layers of toilet paper over the paste (trying to be resourceful)and then covered it with gauze.

IT RUPTURED OVERNIGHT!!!!!!!!!

At this point, while we wait for the Turmeric pills to do what they will or won't do internally, we at least have Turmeric to place directly onto the flare ups to cause releif topically!

This is a HUGE deal to me. I have to say, I thank God for giving this earth Turmeric, because so far we have been able to use it to cause TWO boils to rupture, both within a 24 hour period!

She was still dealing with some pain this morning, but not as bad as it has been.

I'll be talking to the pain management team to give them a nudge about finding meds to help the pain subside.

So, I'm guessing that Turmeric doesn't really do much for pain, either way, it has provided more help in the last two days than I even expected.

Thanks for reading.

Update 10/27/10

My daughter has still been taking four Turmeric capsules a day at 500mgs each. Two in the morning and two at night.
I plan to continue to let her take them like this for another week and then begin to scale back.

She has also been taking Clindamycin twice a day as instructed by the doctor.

I have to say that since she started taking the Turmeric a week ago (Wednesday) she has been showing some improvement. After applying the Turmeric paste to two sites and both rupturing within a 24 hour period, she has shown signs of improvement.

The boil on her inner thigh and under her right arm ruptured, and so far, since Sunday, have not shown signs of returning.

On Monday and Tuesday, she said that all of the open wounds she had were "stinging", but they weren't causing her as much pain.

The amount of draining under her arms is beginning to lessen as well.

This morning, I asked her how she was feeling, and she said that she was feeling a lot better. The stinging subsided, and all she has is some soreness right now. She's not 100% and still has a little pain, but it's not half as much as it was before.

She was a lot more bubbly this morning and was smiling and laughing and talking with me as I drove her to school (she is NOT a morning person! LOL!) and it was refreshing. She was walking, and there was no limping while she walked.

She's improving, and I praise God. I am not sure if it's the Turmeric or the Clyndamycin, but I pray that it's the Turmeric :-), because if it is, then I'll know what to continue to do.

I'm so grateful to my Lord and savior, Jesus, because even if it is temporary, my daughter is not in pain right now. I continue to pray, and the closer I get to Him, the better she seems to be doing!

Thanks so much for the info....it's been so helpful. I'm new to the site since yesterday; I'm in phase 3 and presently have 5 open sores that are draining and one a huge boil the size of a golf ball on my inner thigh so will be trying the tumeric tonight to try and having it bust and relieve the pain a bit. Talk to you later.

Sofia

Update 10/31

I am so excited to post this update!

On Wednesday 10/27.....drumroll please........

My daughter went to Powder Puff football practice tonight. Powder Puff football is girls football that they have at her school once a year. She actually felt well enough to participate! *tears*

The game was on Thursday night, and she played center. It was amazing!

However, just as Rick said, on Friday, the nausea and upset stomach kicked in, but as I said before, I was planning to scale back after a week of 2000mgs.

She's walking as if there's nothing wrong with her now. She still has some drainage under her arms, but all other sites on her body are causing her minimal pain. She still has trouble lifting her arms because of the skin stretching, and soreness, but she is a million times better than she was this time last week. She still has to take the Clindamycin, so the jury is still out on what is causing her to improve. I really believe it is the Turmeric.
I'm just grateful to God that she's still determined to LIVE, and that He has provided some relief for her! *more tears*

I'll continue to provide updates as she progresses. Thanks so much for reading my little journal entries......LOL!

Update 11-10-10

Well, my daughter has been steadily taking the Turmeric daily. Mostly 1000mgs per day.

She's been doing great, however, there is still drainage under her arms, and she has still been dealing with some pain.

She did miss two days of taking the Turmeric and winded up having a MINOR flare up in her groin area. I'm grateful that it was minor, because almost all of her flare ups are HUGE.

Today she has an appointment with the pain management team at the hospital, and I'm really praying that they don't try to pump her full of meds. She really doesn't like taking meds, and I don't blame her.

So, I will be returning with an update!

Thanks for 'listening'!

Hi all of my soulmates!

So happy SO HAPPY to have finally found a forum like this one. If nothing else, it helps us know that were not alone.

Ill apologize right away for the length of this post, I got so much to share and maybe if we put our heads together, we might come up with something. My post did explode the thread cause it exceeds the max nb of characters, so Ill have to multiple post.

OK, so Ive been having boils since I was 16 years old - Im now 47, so that makes me a veteran (!).

Over the years, things have evolved. When I was younger, Id get a boil (I called them volcanoes) which would grow and grow (and hurt and hurt) until the volcano got real hot and erupted under the pressure of the universe (actually, usually my fingers). It would drain, then Id be fine for a relatively long period (few weeks, lets say). I mostly got boils on my bum and middle of my back I might even have had a few on my throat just under my chin (anyway, where the immune system glands are located). Later I got some in the groin area and under one of my thighs.

Later, in the last 10 years, I got boils but they didnt reach the volcano bursting phase. They just just calmed down, even to the point I couldnt feel them, then wammo, one day the boil would decide to let me know ITS STILL THERE start to swell, drain for a few days, then go back to sleep. Some actually went completely away. Some (in both my groin areas) have been sleeping there for years, inactive, but still THERE. And one, on my right bum, has been jazzing on and off for close to 4 years now.

Now, for the analysis part.

1. First thing I noticed is that boils tend to happen near lymph glands (immune system sub-stations) which are located near openings: groin, bum, underarms, throat (under the ear). I never heard of anyone getting a boil on a knee or forearm or on the tummy. So there seems to be a link.
2. I can see that theres a link (at least in my case) with boils either appearing or coming back alive and the food I eat. When I was about 30 I kinda put my finger on something, but Ill need your help to completely solve this one (any chemists out there?).

If I want to create myself a nice boil, all I need to do is eat CREAM. Just one tiny cup 2-3 mornings in a row in my coffee, and here we go! OK, so when I realized this, no more cream (I love cream, but I hate boils more). So that took care of things for a good number of years, simply by avoiding cream.

Then one day (pay attention, wheres the link?!?), I went on this salt & vinegar chips frenzy, must have eaten 4-5 bags in that amount of days. Well by golly, I got a biggy boil. Bedazzled look ^.^. Whats the link between cream and vinegar chips ?!? I looked at the ingredients on the bag, and it read like it was in Chinese. But I think the culprit may be acetic acid or citric acid Lets continue on with other examples.

So no more vinegar chips for me. Now, in recent years, when the boils came, I was scratching my head cause I wasnt eating either cream nor vinegar chips. But I did notice some sort of unscientific link between cheeses and boil recurrence (but not boil creation) and other flavoured chips like BBQ, bacon, all dressed, etc. Might be a little tiny amount of whatever acid left in cheese and in the other chip flavourings ?

Now, listen to this. About 3 weeks ago when I discovered this link, I went out and got some turmeric capsules and started taking one 450 mg capsule + pepper every week day, and take a break on week-ends. I add pepper because I read that it greatly increases the absorbability of the turmeric (like 1000%) which would otherwise dissolve before it reaches the intestines where the body absorbs it.

Alright, so Ive been taking 1 capsule per day. For the first 2 weeks, I didnt notice any significant change. Then I took a bath one evening and I was going WTF ! See, Ive had these fungus tinea versicolor on my inner arms, tummy, back, neck, inner legs, ever since I was 16-17. Treatment was to coat body with sticky cold Selsun selenium shampoo (not a pleasant experience). They would go away but always come back, so I kinda quit the battle and let them parasite me. But that bath day, was The day the tinea left the country. I told my husband I couldnt believe this. Moreover, I had all sorts of little bumps and rashes and stuff on my upper arms and atop my back. ALL GONE AS WELL !

OK, my boil was still there, but I was getting good results with other ailments. Then the next week, I scratch my groin (sorry to be so graphic) and you guessed it, NO MORE SLEEPING BOILS, GONE ! ON BOTH SIDES ! O.M.G!!!

Now about 3 days ago, my observation of how my resident boil was doing was that it was in a calmed down state, draining a bit here and there (I always put a bandage on it) but I could frankly say it had swollen down quite a bit and was behaving. All I needed to do now was to continue on with the capsules and be patient.

I just happened to buy a big cauliflower, which I dont often eat because my husband doesnt like cauliflower, so I dont use it in my cooking. But this time, I got one, it was on special, and I cut it up, froze most of it (after blanching it, if you care for all the details !) and put some in a jar filled with vinegar and pickling salt, so I could munch on a piece here and there. Stay with me here. I took ONE piece of it, and a few hours later my boil went totally NUTSO. (I also had had a vinaigrette salad with my meal (vinegar and oil based) the day before).

Conclusion: Citric acid? Acetic acid? High PH due to vinegar intake? What is the chemical constitution of cream? Whats the PH of cream? Does the staph bacteria like to multiply in high acidic circumstances?

I know I have more questions than answers, but some of you out there might have had similar experiences. Maybe if we can put our finger on what exactly causes boils to appear or to flare up, well be able to somewhat avoid that element as much as we can and improve our situations. Cause if its something in what we eat and dont know it, we might be self-boiling, if you see what I mean or auto-boiling, causing our own demise !

Nb: strangely enough, I dont see any difference when I eat a pickle well lets say that Ill be more attentive next time I do eat a pickle and see if theres a link there as well.

OK so if you want to give your body to science for a little experiment, Ill try to make this suggestion so it doesnt hurt haha, might as well enjoy this. Go get yourself some cream cheese, parmesan cheese and some cream and make yourself a nice dish of creamy cheesy fettucinni alfredo (I use fresh angle hair pasta) which youll accompany with a side of any picked vegetable you like, but it has to be only vinegar and pickling salt (just cut up a veggie and put pieces into jar covered with vinegar + salt, let sit 24 hours (its best after 3 weeks)). These arent real pickled vegetables, but theyre just delicious anyway. Finish the dish with a side order of your favourite flavoured chips ;-)

Let us know what happened (apart from the fact that you had a darn good meal!).

In the meantime, Ill keep you posted as to the progress (or regression, lets hope) of my
My heart goes out to all of you,

Susan-daboil-Richards

Nbb: I drink beer regularly so that might alter my PH or wateva, Im no chemist, I think thats clear by now.