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No Money ->no Cure ->no Hope

 

I have HS. I've been getting boils for about 10 or so years. I hate it. It slowly progressed from about one or two lesions once in a while, to 5 and 6 new lesions a week. Right now i have some boils that are new, some that have erupted and some that have reappeared. I can’t even count how many scares I have. I have them under my arms, breast, between my thighs and buttocks.  I am probably at stage III by now.

I am 23 and in graduate school. I don't have health care. The last time i went to the Derm for HS she gave me some antibiotics and afterwards she put me on accutane. The antibiotics worked while I was on them. But after I stopped using them my HS became worse. The accutane did not work at all for my HS. Accutane is an EXCELLENT acne treatment, but HS is not acne. So now I have no facial acne, but my HS is at its worst.  I really can’t afford to go to the Derm on a monthly basis as I should.  When I go to the free community clinics they have here in my home town, they usually look at me like I’m a monster when they see my skin. Then they send me away with some type of antibiotics. They think 7-10 days worth of antibiotics is the cure for everything! The antibiotics work while I’m taking them but after I stop using them my HS gets worse. I need to see a specialist on a regular basis to control this beast. I have no money to see a professional Derm. I guess I have to wait until I finish school get a job and get some type of health care.

I hate HS. I feel like I’m dying slowly. Every day, month, year it just seems like it gets worse. Im tired of watching my body disintegrate. I feel disgusting. I look disgusting.  I am very depressed. No money, no cure, no hope.

 

Deirdre,

North Carolina

 

HSinNC HSinNC 22-25, F 18 Responses Nov 19, 2009

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Wow,,,,I sit here and read all of these stories and they really make me stop and think. My daughter got diagnosed with HS this past September. She is is 16 and is having such a hard time. We have gone to a dermo ..who prescribed her acutane which initially helped clear her face and back but the flare ups and the bumps in the inner thighs and other private areas continued. I finally decided to take her to a Holistic doctor...which can be a bit expensive but I would like to share what was told to us and I hope I can help...They took a sample of her blood and was provided with a specific diet. She is suppose to be Gluent and Dairy Free for the rest of her life. This was based on her blood type. You can go online and google your blood type and will find foods that are beneficial and foods you should stay away from. She is also taking (vitamin A, E, 90mg of zinc, fish oil 3000mg, vit D, HM Forte-probiotic ,liver clenser -thorne, Super bio vegitarian, chaste tree berry -to assist regulate menstral period -so no birth control) and dim-plex- all natural products and wheat free. I try to reminder her that she should detox her body every 3 days..(1 apple/1 leaf romaine lettuce/1 bannana/squeez lime juice/handful of spinach-water). She uses the tea tree oil and also squeezes lime( if you can take it cause it may hurt) onto a pad and puts it on leasions to help heal. Peroxide as well. The above have decreased the outbreaks in the privated area. Another thing we do is have a glass of freshly squeezed grapefruit juice on a daily basis. It clenses toxins in the liver...it has great properties. Building up your immune system is something to consider to fight out breaks...garlic pill a day or 3 garlic cloves a day....green tea is also a great anti-oxident.

I personally think that this monster which I call can be controlled. I feel that all this processed foods that we eat in general cause this monster to surface. I believe education is key to overcoming this monster or at least controlling it. My daughter confessed to me yesterday that she wants to end it. I listend and felt so helpless but I told her that she cannot let this beat her and that she has to learn to love herself, by loving herself she can then educate herself and try to figure out what makes this monster tick and prevent it. So for the next month we are going to keep a journal of everything that enters her mouth and see what happens. I love my daughter and I cannot sit around and do nothing. I hope this information can help others. My prayers go out to all of you.

I can not afford medical help either, but I've done tons and tons of research and self exploration and have zero doubt that it is 100% an autoimmune disease. First let me tell you that I have been an HS sufferer for 7 years but have only truly suffered for 5 1/2 of those years. Mine are/were mostly in my groin, down my inner thighs, and left armpit. I have so much just wanting to spill out of me, so I better get started:

If you want real help without paying much, (I want to say "I suggest", but everything in me is wanting to say "I insist", so I guess I'll just say) "I hope" that you try these easily implemented tips out as it has helped me immensely!

Ok. Here we go. Stop eating every and all Nightshade food. Basically begin practicing an “Autoimmune Diet”. Nightshades include things like potatoes, tomatoes, eggplant, peppers, etc. Stop eating pork and cow, yes that means milk (rice milk is actually pretty tasty) and cheese too :( Stick with chicken, turkey, fish, etc. Drink a glass of water a day with an entire lemon squeezed into it and just down it.

I also take 1000 mg of Curcumin (aka Tumeric) in the morning and 1000 before bed. You could start off with 500 mg first if you'd like but you've had this condition for so long that you might really want to consider 2000 in the morning and 2k at night... but I would play around with it. From what I've read as long as you dont have any previous gallbladder conditions this mg will be ok for 4 months or so but then I'd back off to a lesser dosage, like 1k twice a day. It does not cause gallbladder issues, they just warn people who already have them. I'd like to tell you what kind of pills I take but I fear ppl will think I'm a part of the company which I am NOT... I feel your pain and want to help, so I'll just tell ya what I use and what has actually helped me: Doctor's BEST With BioPerine Best Curcumin c3 Complex 1000 mg / 120 tablets. It'll will cost ya around 40 bucks and will last two months! It's a literal miracle at helping large boils "burst" faster (and not just lingering for days and days and weeks), at helping medium boils subside more quickly (for me they seem to just die... I have to admit I love to kill them, does that make me sick? LOL), and at basically knocking out the small little ones (they dont even come to the surface).

I've also noticed a huge problem with anything labeled "diet". If my lips even touch the edge of a diet soda can, I have a vicious flare-up. I do not consume anything with fake or lab created sugar in it. After showers I use “Desert Essence Tea Tree Oil Skin Ointment” (again not an employee, just found these gems through tons of trial and error and thousands of dollars previously rinsed down the drain) and products in the Desert Essence line that contain Calendula Extract (look it up, this stuff is fascinating!) there’s a body wash that I guard in my house with my life *chuckles*. Lastly, some people say to steer clear of chocolate and liqueur (even wine and hard cider) but personally (and thankfully LOL) I've narrowed those two out as issues for me and feel confident in consuming them.

This may seem like a lot, but if you do nothing else, at least 1) stop eating every and all pork product 2) and potato product, 3) down the lemon water, and 4) take the pills. If you're at a 10 right now these SMALL changes will bring you down to at least a 4 which we all know can be a huge blessing.

Something I would highly suggest is going "boils to the wall" (see what I did there *giggles*) and do it ALL, then slowly add foods back in one at a time to see if they cause issue and I mean slowly. Add back in one food every 3-4 weeks, if you can.

I hope I dont sound like I'm cra-cra, but I'm really passionate about this, enough so that I created an account just now so that I could come in and reply to you. I really pray you try these SIMPLE tips (ask yourself: what could it hurt?) and I hope like he|| that they help you! I think now that I have an account I might see if I can share my struggle and triumph with others on here. God Bless!!!!!!!!

I absolutely understand what you mean. Ive had HS since i was 3 years old. I wasnt diagnosed until i was 17. Im 31 right now and pregnant. Been in a stage 3 since i was a teenager in my groin region, but im moving from a stage 2 to a 3 undermy arms while in this pregnancy. Im having to quit my job because of it and imso worried about knowing if i can take care of my baby, let alone myself. The worse part of this blasted disease is that you have to literally watch your body rot itself out. Doctors are useless. I will tell u that what i have found helpful is to talk to people about it. I was taught to hide it my whole life. I met my husband who is wonderful about it. I never even believed there would be someone out there who could ee through the disgustingness of it. The. support means everything. This is the first time in 28 years ive ever gone out and searched for other peoples stories. I feel a need to connect with someone who understands it. I read a lot of the posts on this site and was struck by yours. You used the same words i have held in my head for as long as i can remember. You even refer to this disease like its a person,and evil entity. I understand that.

I have heard that steroids can help ease the symptoms. The next time you have a chance to go to a doctor ask about them, that might be the most cost-effective way to manage your symptoms. I really hope you get better, and stay strong.

Hi , I am new to the ite and I just found out what the name of this condition was after 18 years of cutting and cutting and still have these lesions back to back monthy. Once one heals another is already painful and forming. I have breakouts at least 3 times a month in all areas... I have been cut on so much and given every antibiotic under the sun to the point were I have been told I now have Ebstein barr Virus.. Ughhhhh .. Never heard of that but it is due to and over abundance of antibiotics. It has taking over my life and time I try to do something like working or just exercise I have a breakout that knocks me off my feet. Yup another surgery. And they still come back after the surgery which is even more painful due to the scars etc.. I am so depressed just because no matter what I do or try to do these breakouts prevent me for moving ,I can't sleep wow ok I'm talking to much thanks for listening..

I also have HS. i was just recently diagnosedand my gyno thinks its due to testosterone levels being high. Get yourself tested. my Doctor has me on spiranolactone.

i am a 23 year old lady who has HS i have been suffering since i was 14 did not get diognosed untill around 3 years ago, sometimes you just dont want to get up the pain is so bad, i love to come and read peoples views as no one in my family really understands it and expect me to just get on with it, it has helped though because i do just get on with it back and forth from the doctors and dermatologist and i have been on long term antibiotics for 2 years now they keep changing them but they still only reduce the lumps a little and they are still just as painful.

I also have this for over 20 years. The best treatment is Kenalog (steriod) and antibiotic injections when you start to feel the lump. Go to the hospital if you can't afford the treatment. Cutting and draining is very bad as it causes scar tissue which future sores cannot drain through. My prayers are with you to find relief.

I just found out today I have HS. I know how you feel. But I promise you you are beautiful no matter what your skin looks like. I promise you that.

I am crying now... I have HS also. I am a pianist too. Dont feel beautiful any more. Its on my groin area , I have now 4 of them, I must go to the surgery...

there is hope love.. i went to a doctor today... he said he can help me.. I am 25 and have had HS since i was 11. im between stage 2 and 3... he said it could be a white blood cell count issue.. almost autoimmune? i think he said. he put me on Doxy for 10 days along w percocet for pain and said in a week come back and well do a full blood workup. he said if its a WBC issue i can be "fixed". if it is not wbc he can still help.please dont feel so in despair, i have been there, and i now have hope. i hope one day you will too. <br />
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i wish you love and a pain free life. &lt;3

It is an autoimmune disease but ive never heard that it could be a white blood cell issue. What came of your treatment and blood work?

It is my baby sister suffering with HS and she is about to give up I fear. At 42 she has been at her worse the last three years, in and out the hospital monthly. Please how can I help my sister?

Please try tumeric 1tsp in warm milk, and zinc Picolinate tablets, and finally get one AZo yeat supplements for her to try. Earth Clinic dot com really helps!!

I agree with you all the way. Thats exactly what it feels like. Like your dying slowly. Ive had HS for years now and it only gets worse and worse. The only medication that ever worked for me Humira is very expensive and when I say it worked it made life a little easier. Reduces the flare ups but doesnt get rid of the disease. And like any meds that seem to help as soon as your off them the HS roars back with vengeance.

I have been on the same roller coaster too!! It feels impossible to continue with your daily routine when you have flare ups. I am currently going through one and your right it doesn't get easier at least for me it gets worse just like you. But, this is a life long condition that we just have to deal with. My advise, don't be so down on your self. Find support around you and online. I think it helps a lot. Thanks for the wheatgrass tip. I'm going to try it.

With Accutane make sure you are on birth control, I was told 1 year after stopping treatment was fine but 3 years after ceasing accutane treatment I lost twins at 20 weeks and this was attributed to the accutane i had take as a teenager.<br />
I now don't use any medications at all as they just weren't working, instead i wear cotton, shower twice a day with fragrance free soaps and dry really well, manuca honey in tea helps as does silver nitrate dressings when I have open wounds. my biggest fight is keeping my weight down as i have days where just walking is too painful.<br />
Hope you find something that works for you.

creams and pills just dont work after awhile i have found that pan oxyile(speeling)10% soap works real good at keeping HS at bay ( you will still get lumps but they go awhile alot fast you can gget the soap at ur local drugstore just ask the pharmist it cost bout 10 bucks hope it helps also a dusting of cornstarch in the areas helps with friction when ur in ur house when goin outdoors 2toms sport shield works good make the area slick and eass the friction

Hi. I'm Ra.. We have the same fate but I have discovered how to deal my HS madness.. Have you ever heard of wheatgrass powder or simply wheatgrass juice?! try it plus exercise and diet.. and avoid stressful activities in your life. God bless. (please pass this info to other HS victims.. thanks)

Checked out a few sites for you. Hope the information helps.<br />
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I see that your condition does appear to be linked with Acne, hence the Accutane and antibiotic treatment. As an X acne sufferer I noticed that when on antibiotics my acne disappeared and returned when my treatment stopped. I took roccutane (same drug) and it took about 8 months to notice a change in my acne.<br />
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I found this link to be information about your disorder, and helpful regarding causes and treatment.<br />
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http://emedicine.medscape.com/article/762444-overview<br />
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http://emedicine.medscape.com/article/762444-treatment<br />
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I noticed that they stated that Accutane was not always successful. They also mentioned that excessive sweat and stress added to the conditions frequency. <br />
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http://dermnetnz.org/acne/hidradenitis-suppurativa.html<br />
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This site mentioned:<br />
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* Wash with antiseptics or acne preparations to reduce skin carriage of commensal bacteria. Hydrogen peroxide solution and medical grade honey have been found helpful.<br />
* Wear loose fitting clothing to avoid friction.<br />
* Follow a low glycaemic diet, and aim for ideal body weight.<br />
* Don't smoke.<br />
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Plus I found this site for support<br />
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http://www.hs-foundation.org/<br />
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Just a little "outside the box thinking" have you considered treating this like acne and tried things like eating only healthy food, exercise regularly and taking excessive amounts of antioxidants??? <br />
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Look I don't have much on this one. But I hope something helps.

Don't know about HS, but with any chronic disease that doesn't get better, life is very long very long at times. When you're at your best, they always tell you to rest, but for me, I ssay What the hell, when I can get up, I will not stop, ever, until my ms/ns, all this abbrev, multiple sclerosis, neurosarcoidosis, comes a roarin' back, and knocks me on my ***. So why rest, cause as far as these diseases go, sometimes they never let you get up agai, ever, so, I rest only when I get the amount of sleep I need, then up I get, and keep on truckin' along, so to you i wisha, KOT along