Hidradenitis Suppurativa pus and blood.
Hi guys not to be a downer but man I am going through a very rough patch in life right now.
October 23rd, 2015 at 03:26
My husband suffered horrible sometime, he cried. He was perscriped norco which is a narcotic but it did help him. This thing is very hard on all that have it, and yes once it hits the limp knodes the pain does get worse. My husbanded worked with his dertimanogist to find ways to treat it. Humaria is one and sometimes radiation and surgery can remove some of them. My husband was taking cymblta for depression. If your doctors doesnt understand, find a doctor that does. Keep posting things on this and keep pushing for it. There is a need like you say for studys and research. No one should be without human contact, hugs hugs and being around some is helpful. I hope you can find a friend to offer you support and be there for you. Look into other support pages, you can find alot on those for support. Find ways to take your mind off the pain. Try learning mindful meditation and it is proven that it can help. Can you not find someone to help you care for your mom through programs for the elderly, Have someone help you around the house and care for her even just a few hours a day will help. Its not a shame to take cymbilta it can help, find ways to stay positive. Hobbies can help you take your mind off of the pain.
October 23rd, 2015 at 03:29
Thank you so much! I am finally going to be trying Humaria very soon. I know its not a cure but any relief would be amazing!
October 24th, 2015 at 16:14
Hello so sorry for what you are going through. Have you tried MSM sulfur yet.? I commented on June 30th about how I believe it has really made a difference for me. Ive been taking it since March 2015 and have not had a new flareups since. Just maintaing my old wounds and scars. At first I wasn’t sure if the msm was the reason for the relief because I was taking other natural items at the same time but now after all these months I really think it’s the msm. It’s worth a shot.You need something because whatever you are doing is not working and those doctors keep giving u antibiotics and pain meds. I know you need the pain med’s to maintain your pain but those are just the thing that maybe hindering your healing. Trust me i know what it is like to be dependant on something just to help wake up and get through the day but i was determined to see if my body could do what it was designed to do and heal from the inside if i gave it proper nutrition and stopped giving it chemicals and toxins. Im not claiming to be a saint i still smoke a couple cigs a day and eat processed foods i shouldnt eat but ive come a long way.What I learned early on is that hs is not a bacterial infection or a virus such as with mersa or staph therefore antibiotics will not
make it go away. In your case you do have active flare ups which maybe infected so I can see why they would prescribe you antibiotics so that the infection doesn’t persist but I think cycle after cycle round after round of antiobiotics must not be good for your immune system. Try the msm. I order from Amazon and 7 lights is good quality pure msm with no fillers or caking agents. I’m interested if this will work for someone else or is this all in my head and my body is healing on its own or maybe I’m in a dormant phase. I’m scared it will start again. As it is I’m tired alwaus having to place dressing on those areas just to leave the house. I shouldnt complain because a lot of others have it worse and im not in constant pain like i was before but still this is a really shitty way to have to live for anyone. Thank you for your courage your videos you are helping so many of us by bringing awareness to this horrible disease. Try the msm! and let me know 🙂
October 27th, 2015 at 07:10
I do not have HS; if I get a little boil I am miserable so I can’t imagine having them all over constantly. I am sorry you are suffering.
I have had severe chronic pain and depression. It’s like a vicious cycle; the physical pain makes the depression worse and the depression makes the physical pain worse. The cycle can be broken, thank God, with the proper help.
I can’t speak to getting help about HS but I can speak to getting help for your depression. There are effective medications and there are many licensed psychotherapists who help people deal with chronic pain or illness. Help for your depression is worth the effort it takes to find the right treatment for yourself. If you have financial issues your local MHMR may be able to help you or, at least, give you direction as to how to find someone to help you.
October 27th, 2015 at 08:28
Hello, thank you so much for the comment.
October 28th, 2015 at 01:52
Hello Hshelp. I have posted a few times before. Think the niacin is heiping but the Swiss cheese seems only to help in cutting down on friction in the area.
I had a question for you on antibiotics. you mentioned in your video that you were once on IV anitbiotics when you were hospitalized and I wonder if you know what antibiotic they were giving you.
The reason I ask is that when I was in my early 20’s (over 30 years ago) and had my first real painful HS boil the size of a golf ball I went to a very old Doctor. Now he did not diagnose HS, but a sebaceous cyst and put me on Ampicillin 500 mg every 6 hours for 10 days. It worked wonders (other than it came back in the same area about a year later).
I am really researching this disease as I feel certain there is a cure out there. The old Doctor I went to retired and from that point on I never could get another Dr. to prescribe Ampicillin. They would ask if I ever had anything that helped I would say Ampicillin and they would say “I would not give that to anyone” and prescribe Keflex or some other antibiotic that never really had any effect other than a reduction of swelling.
As I mentioned in one of my other posts the most recent research is trying to link HS to staph but the research is flawed as they used prolong culture tests. Well I happened to find the actual study. I stand by my conclusion that it was flawed, but they did detect in almost 90% anaerobic actinomyces with the majority being A. Israelii. In researching anaerobic actinomyces it appears they are normally not a pathogen and are present on the skin flora, however they can cause skin damage if they can invade the skin surface as they thrive in a lack of oxygen environment. They also take at least a week to culture and do not normally show up on a standard culture test for pathogens. They are very slow growing.
In research of them they cause a condition called Cervicofacial Actinomycosis. A Israelii are found mainly in the mouth (although they are present on other areas of the body) and Cervicofacial Actinomycosis has the same symptoms as HS. Boil like pus filled with sinus tracts. It is caused mainly by poor oral care, tooth infection, etc, and is extremely rare now days in the U.S. The boils show up mainly on the cheek and can cause major damage including death if not treated properly. This condition like HS is often not diagnosed properly by the medical community and was common before the introduction of penicillin based drugs.
The course of treatment for Cerviofacial Actinomycosis is now and was then a prolonged course of oral antibiotics of Ampicillin given for 6 months to a year. Or as they now have IV drugs a course of IV antibiotics of Ampicillin given in a hospital for a number of weeks and then orally upon discharge for a month or so. The treatments I viewed for this disease stated that it was important to give enough time to destroy all the anaerobic actinomves present and that short courses (10 days of treatment) is not enough to destroy all the growing anaerobic organisms and can in fact be harmful as the invaders can become resistant to the treatment.
Research also showed that most antibiotics do nothing to “cure” Cerviofacial Actinomycosis. Only Ampicillin, or clyindamicine (sp) and augmenten (sp) although those two need other antibiotics with them are effective. I once had a short course of clyindamicine (7 days) that did seem to help but the Doctor would not prescribe more.
Sorry I wrote a book, but if you know what antibiotics they used on you I would appreciate the information. I have had HS for more than 40 years now and at various times have been on antibiotics at least 500 mg per day for years at a time with no results. None of them (Keflex, Augmenten (500 mg a day for over a year), Bactrim, Tetracycaline, etc worked and from research it appears they won’t as they are not the correct drugs or with Augmenten need other antibiotics used with them to work and in much higher doses.
Thanks for your help
October 28th, 2015 at 01:55
Hello. Man I’m not sure of the namebc i have an appointment in a few weeks I will ask my Dr for my Hospital Records too get the name’s
October 28th, 2015 at 05:44
Thanks for your reply. I look forward to hearing from you.
October 28th, 2015 at 21:21
I can relate to living with chronic pain. Have you tried taking Tumeric capsules and soaking in epson salts baths?
October 28th, 2015 at 21:24
Hello thank you for the comment. Yes I’ve tried both no luck. They unfortunately do not work for hs.
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