Hidradenitis Suppurativa pus and blood.
August 12th, 2015 at 19:52
I just discovered you on youtube after self-diagnosing myself with HS and wanting to do some more research. I feel for you, so much. I’ve read a few of your blog posts and replies and I hope you stick with the paleo diet for awhile to give it a proper chance to work. I know you’ve gotten every bit of advice possible, but I haven’t seen anything regarding Colloidal Silver. if you haven’t tried it yet, I have found it to help heal my boils and open wounds in the past. combined with turmeric I am able to keep things tolerable most of the time. i’m just now considering going paleo to see if it helps clear me up. I wish I had something more to give. I know this is an extremely cruel disease and it just plain fuckin SUCKS to have to deal with, but as you know you’re not alone.
actually, I do have one more thing to add. this might sound completely foo-foo, but our mind and bodies are intimately connected. I have discovered a couple very powerful processes to clear stress and negative emotions quickly, which may have a positive effect on physical health. strangely enough, I myself have not attempted to use these processes on my HS I think out of fear of it not “working”, which is dumb…I should absolutely practice what I preach. anyway, the processes are called Tapas Acupressure Technique (TAT) and Emotional Freedom Technique (EFT). I can tell you from experience they do work and are very powerful in releasing emotional trauma, and that many, many people have reported healing themselves from all kinds of physical diseases. even if you were to just do them on your feelings regarding HS, you will feel more at peace at the very, very least.
anyway, keep on keeping on brother 🙂
August 18th, 2015 at 21:29
Hello my friend I actually did take Colloidal Silver in 2008 for a few months.
August 14th, 2015 at 03:14
I posted this link to a friend (or who i thought was a friend) page and when she said he’s just faking and so are you. I told her that you don’t know….her response was we are both nasty and lazy and need to get jobs. she is no longer a friend and i took my cats away from her. Thank you for posting this by the way. and what would you recommend on using Tape wise for open wounds on the underside of hte abdomen. Most medical tapes i’m senstive too.
August 18th, 2015 at 21:28
Ask her if I can send her a box of my blood pus soaked bandages. lol.
August 14th, 2015 at 22:26
Thanks for your detailed remarks…have been following for some time. You mentioned weight loss recommendations, which I have also read repeatedly…do you mind sharing how much weight you have lost or perhaps % of loss or BMI? Thanks in advance.
August 18th, 2015 at 21:27
I went from 260 to 200 so far. But when I first got HS I was 16 and weighed 140 and stayed that way until my mid 30’s.
August 18th, 2015 at 17:10
hey C, it’s J
just left a comment on your Feb 24, 2015 youtube video. told you I’d leave my email for you if you wanted to get in touch. it’s firstname.lastname@example.org
just to reiterate, basically I’m seeing good results from the fastHScure ebook, and I feel uncomfortable with throwing the word “scam” around and trying to have the book taken offline, since it is in fact helping me and could help others. I know it didn’t help you and I’m truly sorry about that. I feel like we HS sufferers are a bit of a family and I know everything we put out there is with the heart to help others who deal with this. I know that’s what you’re doing and same goes for me.
okay i’ll let you go. please feel free to contact me for any reason. take care man.
September 3rd, 2015 at 13:39
I hope that you are having a good week. I wish to thank you for the awareness that you have been doing. I know it must not be easy to make videos regarding HS, and for what it is worth, you have more balls than I do !
I discovered that I first had HS about 5 years ago. I am 45 now. As you have mentioned in your blogs and videos, I was embarrassed to talk about what I first thought of as painful, red ‘boils” with my GP. Finally, last year after consulting with my Gyno for my routine check up, I spoke to him about it. Strangely enough, I was a little surprised that I had to mention it to him since all of my HS is in my groin area. In any case, he gave me a referral to see a Dermatologist. The dermatologist told me not to shave anymore (d-uh, did it look like I shave doc ?) and then prescribed some fancy soap and antibiotic creams. As you can imagine, none of it worked. Discouraged, ashamed and depressed, I sit here writing a comment to you, all the while feeling the pain from my current 2 flare-ups.
I have already said enough, and edited this comment way too often.
Carlo, I hope you can find some comfort in your life and I hope your mother is well.
September 13th, 2015 at 03:26
Thank you for the comment. I know exactly how you feel my friend. It sucks. Stay strong. Someday we are going to figure this out.
October 27th, 2015 at 08:24
I read that you’re going to be trying Humira soon. I hope to see some feed back from you regarding this drug. I will be discussing the possibility of trying it myself with my doctor. Hopefully Humira will provide us with some relief.
In some of your latest videos, you talk about depression. Have you thought of taking any anti-depressants or seeing a therapist ? I know that both these options costs money, so if you require to talk to someone, please don’t hesitate in contacting me…you know my email.
Hope your mom is doing well. Take care.
September 12th, 2015 at 03:45
Hi there, I to have HS for bout ten yrs. I saw u tried the paleo diet. I don’t know if u saw the paleo auto immune disorder diet. It’s more strict. I dont follow everything but the one thing I do follow from it was to stay away from night shades, and that has given me a little relief. Anyway, I work at a hospital in gastro intestinal radiology dept. I see pts that have fistulas. A fistula is and infection or abscess that simulates a sinus tract that u and I get. These people can get them any where on or in their body. Basically it just and infection that starts from within. And these people suffer greatly. So I googled how people with fistulas heal themselves. Results where Manuka honey and tummeric. Manuka Honey has enzymes that have antibacterial properties. It has been proven to heal MRSA (usually a hospital acquired infection that’s very hard to get rid of). You can eat it and put it on open wounds. They come in different grades. Honey producers have developed a scale for rating the potency of manuka honey. The rating is called UMF, which stands for Unique Manuka Factor. It should be above 10 and it goes up to 500+. It’s sold on amazon and in most health food stores. A little bit pricey but I believe it can help. I bought some 400+ 2oz 35 dollars, just started using it. Anyway tummeric is an anti inflammatory I take it in pill form 3-4 times a day with food and it helps! When I take it My pain goes away and the sites reduces in size. I recently looking for more remedies, and I found azo. It’s helps with yeast/ candida. Most people take this with or after antibiotics. I’m probably 30 pounds overweight, with a little bit of a belly. Like u I’ve tried to loose weight but I can’t seem to loose weight, every time I try to excersice I get a bump the next day and that’s the end of excersice for me. It sucks. Anyway They say that people with belly’s tend to have yeast. Azo helps with that. So hopefully these r something new for u to try! manuka honey, tummeric, azo, coconut oil is also anti fungal and bacterial. I think it will take some time to completely heal but, I do believe if u increase the consumption of these items like three four times a day this will heal you from inside out. I will keep u in my prayers! Good luck
September 13th, 2015 at 03:27
Thank you very much for the info!
September 12th, 2015 at 04:01
have u thought of seeing alleo pathic dr or hollistic dr?
September 26th, 2015 at 12:32
Hello. This is my first time on this site. I also have stage 3 HS and have since I was 16 years old. I am soon to be 58. I have been through antibiotics, surgery, etc. I had surgery when I was about 38 years old. Both armpits and left side of my groin. Groin area had to have a large skin graft from my thigh. Had the surgery after I had a flare the size of a baseball on my scrotum with a half a golf ball on top that would not break. Ended up in the ER and had to have it drained and packed. I have never had another boil or flare in the area’s that were operated on however I have now developed HS on the right side of my groin. A word of caution about surgery. If you ever decide to have it you must have a well trained plastic surgeon. If they only excise the infected skin area you will get it back. Many will botch the surgery. That being said the time to heal takes a long time and the Dr. I went to when I was 38 is retired. I recently saw another Dr. and might as well have gone to a witch Dr. I knew more about HS than he did and it pissed him off. Said I just need to use antibacterial soap. I agree with this blog that ivory works just as well.
That being said I don’t intend to write a whole book on here, but I have researched HS a lot and I would like to share what I think could be causing it as the medical community I don’t think has a clue. When I was first made aware of HS there was little to nothing to be found even on the internet. It just said it was rare with no cure and it was caused by “unknown mechanisms”. The medical community seems to be dead set to now say it is caused by clogged pores and bacteria. I think this is just BS. They can culture a pimple and grow P-Acne bacteria. Culture a boil and grow Staph, but when they culture HS in over 60% of cases they find nothing and in the other 40% only trace amounts of various bacteria (since many HS sufferers have open sores I think that would account for the 40%. The latest medical research I could find now shows they are doing “prolonged cultures” and finding some bacteria in about 90% of HS boils. This is poor science with dubious results at best and an out and out fraud at worse. Kind of like saying “If the regular culture tests don’t prove it to be bacteria than we will just make a culture test that shows that it is caused by bacteria”. Here is what I think may be causing HS and I will explain why I think it may be the cause and also let you know what I am currently trying to do to cure the area I now have affected. I will also post from time to time to let you know the results of the treatment I am trying in the hopes that (if it works) it may benefit other people that suffer from this.
HS affects the Apocrine sweat glands. Blacks have the largest apocrine glands, followed by Whites and lastly Asians. HS is more prevalent in blacks, then whites, and then Asians. So it appears gland size is a factor.
Apocrine glands secret Salic Acid (which is used by dermatologists to assist in curing acne) as it softens dead skin cells and keeps them from clogging pores. It is also used for chemical peels as acid is caustic. This is one reason I don’t think it has to do with clogged pores. I think the glands are over active and secrete way more Salic Acid then you need. This causes skin to do it’s own “chemical peel”. As it becomes sore friction from “skin to skin”, or clothing to skin damages the hair follicle. Secretions build up underneath the skin as they are trapped. You body tries to heal the outer skin but white blood cells can’t get to the skin surface so encircle the secretions underneath. As secretions from Sebacious glands and Salic acid continue to build up the flares pop up until they break and drain. The pus being Salic Acid, Sebum, and dead white blood cells (dead white blood and T-cells causing the stench).
I also believe that not everyone with over active glands will have HS. It appears that most all people with the condition are either smokers or overweight. If you look at the areas affected by HS it is in area’s that do not get much air from nature. That means oxygen to those area’s need to be supplied by the blood. What do people who are overweight and or smokers have in common? Circulation problems. Capillaries carry red blood cells to the skin surface supplying oxygen to aid in healing damaged skin. I have never been overweight so that is not a problem, however I am a smoker and have been since I was a teenager (not condoning smoking). It is not good for you.
I think that these factors damage the capillaries (perhaps permanently but I don’t know that for sure). That is why losing weight or quitting smoking doesn’t always improve the flares from HS. It could be the damage is already done. Like I said I don’t know that for sure hopefully that is not the case.
I will now describe the treatment I am trying and why.
I am currently taking niacin supplements. 500 mg per dose 3 times a day. Not the time released kind. As a warning I would like to add many people get what is called a “niacin flush” turning red and feeling warm when taking niacin. This is because the niacin opens up capillaries at the skin surface. You should start out slow if you try this. I started with 100 mg, had no flush, so increased to 200 then 300 and am now up to 500. I only got a mild flush at the 500mg level so I may increase it later but will stick with 500 for now 3 times a day. I am doing this to try to increase blood flow to the skin.
I am also applying nitric oxide to the area using nothing more than 40% nitric oxide diaper rash cream. (I think 40% is about the strongest diaper rash cream available over the counter). This should help supply oxygen at the surface and help diffuse the Salic acid. Zinc oxide is also a natural anti bacterial agent. The remaining 60% of inert ingredients should help to prevent friction to the area. I will try to post back periodically to let you know the results. I wish you all well and hope this works.
October 10th, 2015 at 11:55
Wanted to give an update. The zinc oxide (I put nitric oxide in the last post in error) did not work and made things worse . Had a really bad flare after using it. Prior to using the diaper rash cream I was using a different product that I will not mention at this time as it sounds crazy (although it too is based on some science). It was providing relief and I seemed to think it may have been working, but I talked myself out of it. Although it is a strange treatment I have now resumed it for the past 2 days and again things are improving greatly. I will continue this time with the odd treatment in the hopes it works and will continue to update you. Again I wish you all well.
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