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Need Advice for Treatment!

nickcole Message
16 Apr 2009, 12:20 AM

I'm a 29 yr old female, been suffering with Auto-Immune Disease. I've had numerous pyoderma skin ulcerations since I was 22. I am Diabetic, have ulcerative colotis, and PCOS. Almost 30, to this point unable to conceive children (which is affecting me terribly). Despite the disorders that Auto-Immune Disease has brought on, I try to remain positive and hold my head high, not allowing it to affect me, mentally that is. Physically, I suffer with chronic pain related to these disorders Daily and it affects my sleeping as well. I've tried some alternative treatments, only with some success. I currently use Aquacel Dressings for my leg ulcers, some have ones have came. My Calves are torn up badly and the new ulcerations keep working their way up towards me knees, and I'm hoping I don't get any above or on my knees. Just want to find out what others are doing to cope with this, and what other treatments are advised. I attended a wound care clinic out of town for awhile and they worked wonders for me, however I can't afford to go to them at this time. Please help!
kerry Message
16 Apr 2009, 10:33 AM

Hi there, so sorry to hear of your trials with this terrible disease it is a terribly unfair thing. I am a 50 year old mother in Australia and my 11 year old daughter was diagnosed with PG last year but no other auto-immune disease at present though we are told we must watch for possible developments. She also has a neurological disorder called Neurofibromatosis1 which has been fairly dormant to date but we cannot predict what the future will bring. We had great success with PG wound healing using antioxidants and other high quality nutritional supplements as well as Hydrofera Blue dressing for relieving pain. We contacted the company in the USA which produces Hydrofera Blue and they were very helpful I suggest you look them up on the web and see if they can suggest how you might access their dressing. I feel for you with the problems with conceiving as well, as I had years of trying to conceive myself and had to use IVF and donor eggs but am lucky to have 11 year old boy girl twins. You sound like you have a great attitude, I would be happy to correspond with you and offer any advice that may be helpful. I am only relatively new to this site and am not quite sure how best to communicate but if you post again on here they will notify me via email. Stay strong and focus on the positive. Thinking of you.
shirley_ann Message
3 Jun 2009, 03:23 PM

I've had only two episodes of PG and pray God to never have another one. I have been without medical help as no one here has ever heard of it or treated it and a plastic surgeon in the hospital cut away some skin without my permission and against my protest that it would exascerbate it, which it did, turning 2 ulcers into 10 new ones. I found relief by searching internet research articles and I treated it successfully with prednisone, .5 milligram per kilo of my body weight. The ulcers responded immediately but still have taken a full year to heal and are not healed fully yet. They have closed but the skin is still very tender and I can't wear shoes as it's on my ankle. I also used an over the counter steroid/antibiotic cream. I have heard that it's often related to IBD, which I have, Crohn's, and each bout of PG came after a flare-up of the Crohn's. So I sought a cure for the Crohn's that was not a deadly immune suppressant and I found it in the the SCD, Specific Carbohydrate Diet. The book, Breaking the Viscious Cycle, has been a lifesaver for me. I have had no Crohn's symptoms for the past 10 months I've been on the diet. I now take no medicine for the disease, only diet. It's the first time in 30 years that I have been free of the Crohn's symptoms. In relieving the Crohn's I'm hoping that the PG will never appear again. Though I am always very fearful of a cut or puncture that may turn into this nightmare ulcer. If you want to know more about using diet to relieve auto immune diseases, you can contact me or search "SCD" or Specific Carbohydrate Diet, or Breaking the Vicious Cycle".
kerry Message
4 Jun 2009, 10:10 AM

Thanks for all the information Shirley Ann. I can't figure out from this site how to contact you directly. As I mentioned in response to your other post, we had great success with nutritional supplements (some of which we ground up and applied topically) as my daughter did not respond well to Prednisolone. We had been told it might take up to a year to heal the ulcers but managed to do so in 10 weeks and had great success with the scar tissue too. Would be happy to tell you in detail what we did. But not sure how I can email you directly?
shirley_ann Message
4 Jun 2009, 12:44 PM

Hi Kerry, I don't mind posting my email address on here,, if you want to contact me. It may be more helpful for others though to discuss successful treatments here. I'm still struggling with healing the ankle ulcer so I'll look into the Hydrablue that you mentioned. I haven't been able to wear a full shoe for a year now. I would love to go the beach so I need to get this healed. What nutritional supplements did you use? I found that when I started the SCD diet that my old scar healed up completely and now you cannot even see where it was. I'm hoping the same thing for my ankle. The first one happened with a tiny nick from a razor when shaving my leg and the second happened when I had an accupuncture treatment. Maybe having some of that hydrablue on hand will make me feel more confident, just in case. I went to a homeopathic doctor today for the first time for immune system treatments. He says that the pyoderma is the immune system reacting at the cellulare level and seems to believe he can get my immune system in balance with various homeopathic treatments. I'll let you know how that goes. Please try the SCD diet for your daughter. It's a healthy diet and it works wonders for many inflammatory diseases, and even autisim. It's a bit strict but well worth it. There is a website for parents of kids on the SCD diet called pecanbread, it has a lot of great info on it.