First and foremost I cannot stress how deeply my belief is that HS is NOT a bacterial infection. There are some quotes on the right side to support my theory from a medical standpoint. For me personally, all of my cultures but one have came back negative for bacteria. How can a disease be a bacterial infection when there is no bacteria present? Now I'm not saying a bacterial infection can't occur, because it can, you have an open wound, bacteria can get in there. But any bacterial infection is secondary, it is not the cause of the disease. Because of this I will not take antibiotics unless I actually do have an infection. I would like to give a shout out to the Dr. who asked me when I showed him my lab reports that showed my cultures did not have bacteria in them "how can your previous doctor know if the bacteria was MRSA when he didn't find any bacteria"...
The next thing I feel strongly about is HS is related to hormones. There are some quotes on the right to support my theory from a medical standpoint. My HS started after puberty at 16. I began to notice over the years that I would get flare-ups the week before my menses. So I started to take Yaz (Yasmin) continuously until I started to spot, which was about every two months. This helped out because it reduced the flare-ups. Over time that became less effective to take continuously, so I switched to Seasonique. Seasonique is a 3 month birth control, so you only have 4 periods a year, this helped out even more.
I also feel strongly that a component of this disease is follicular occlusion, meaning the hair follicle getting blocked. In my case I noticed that my HS would flare up when I shaved, so I stopped shaving and went to trimming only and that helped. I have a few skin issues, so I wash with natural soaps, or ivory if needed. I stick with sensitive skin detergents.
I also think that heat plays into the disease. For me it always gets worse in the summer, last July I had 30 nodules flaring up at the same time over my groin and buttocks.
I also believe is that HS has a genetic link, there are many cases of familial HS. Although no one in my family has been diagnosed with HS, my grandfather "had a lot of boils" one of the typical misdiagnoses of the disease.
Below are just some of the medications I've taken for Hidradenitis Suppurativa.
- Keflex 250mg - Noticed no more effectiveness than if I had not taken them
- Keflex 500mg - Same as above
- Penicillin - Same as above – also was extremely itchy while taking it
- Bactrim DS - No marked effectiveness, had to stop after three days as it was making my throat extremely tight, it was difficult to eat/breath. Also had nausea and diarrhea.
- Ciprofloxacin - No marked effectiveness
- Clindamycin 300mg - No marked effectiveness, had to stop after three days as it was causing nausea, diarrhea, and vomiting.
- Minocycline 100mg - Took for two months, and was switched to Doxycycline. More nausea saw no benefit.
- Doxycycline 100mg -Even more nausea, saw no benefit. Switched to Tetracycline.
- Tetracycline - Also taken for two months with no marked benefit. Discontinued because of lack of effectiveness of Tetracycline medications and nausea.
- Cleocin T Gel - Use around skin when it is broken around the lump. Have seen no difference with or without it, but it is continued in hopes of preventing any secondary infection with an open wound.
- Benzoyl Peroxide Wash - Washed with it for a few weeks, but it irritated my skin too much, and again was seeing no benefit.
- Triamcinolone .1% - No bad side effects, but didn’t notice any difference whether it was used or not.
- Hydrocortisone 2.5% - Same as above
- Yasmin (Yaz) - This has been helpful. J Since the lumps tend to be aggravated around menses, the ob/gyn approved me taking Yaz constantly until spotting occurred, and then I was to let myself menstruate. This was effective in the beginning but now I can only take it about a month and a half before I start spotting
- Seasonique - This has been helpful too for the same reason that the Yasmin was. However with Seasonique I only have a period once every 3 months.
- I&D - It was painful of course, the healing time was greatly extended from the normal I was experiencing at the time
- Benzocaine 20% - Helps greatly with pain in smaller lumps
Some more info about me..I started smoking cigarettes when I was 14 and quit when I was 22, it will be 2 years in a few months. Although it was a great accomplishment and I'm glad I did it, it had no effect on my skin. I've taken a lot of antibiotics over the years and I'm sure that I've taken more than listed above...listed above is just what I had pill bottles for when I wrote it two years ago. I no longer take antibiotics unless I know I have a secondary infection, which only happens 2 or 3 times a year. Normally I leave them alone for the most part. I use Benzocaine to numb my skin to make the pain less. I use my own natural pain remedies when I'm at home. If they are really bad and I can't stand the pain I'll go get some Vicoden or Percocet. I started natural pain remedies because I was taking pain medication so much last year because I was in pain all the time that I started to become addicted to Percocet. Since I'll have to take pain medication all my life, I really don't want to become addicted to it or build up a tolerance, so I only take it when I can't handle it. I try to exercise on a regular basis at the gym, however sometimes it's more like twice a week instead of the 5 times a week that I want. I am not overweight. I strongly believe that you are in charge of your own health and you know you body better than any doctor. Your doctor may know more how the typical body functions, but you know how your body reacts. Everything I know about my disease is not from reading websites out on the internet, but actual medical documentation. You can get access to a whole bunch of medical documents by going to the HS Research Database link on my main page. When I found out what the name of my disease was I was left to research it on my own. My doctor did not take the time to explain the disease to me. However he might have not know, since my experience has always been, since I educated myself on the disease, I always know more about my disease than my doctor does. Quite a few of the doctors I've seen haven't even heard of the disease, so I always take medical documents with me.
