Cookies help us deliver our services. By using our services, you agree to our use of cookies. Learn more

What has worked for you?

llewis Message
20 Oct 2008, 06:50 PM

Six months ago my daughter (then 16) was hospitalized with a massive blood clot extending from her stomach to the ankle of her left leg. At the same time she developed a sudden allergy to NSAIDS. After many doctors and many tests, she was diagnosed with Spondyloarthritis, specifically enteropathic arthritis with associated inflammatory bowel disease (IBD). As she matures, the IBD could become Crohn’s or ulcerative colitis. Currently the arthritis inflammation is mostly in her spine, chest and ribs while the IBD is localized to her small intestines (only cramps and pain). She also suffers from vein damage in her left leg and tendentious in her right leg (a symptom). To add to the lovely list of ailments, most recently she was also diagnosed with Fibromyalgia. All of this is pretty overwhelming and seems very unbelievable. She sees four different specialists with four different drug treatments. Her drug treatment for the arthritis seems to finally be working (injection Methotrexate) and controlled exercise is helping with the Fibromyalgia. However she is still greatly suffering from the IBD. Her current treatment is 3X daily Belladonna phenobarb. Doesn’t seem to work. She also has developed allergies to nuts and dairy (which she never had until now). I am interested in learning what similar stories other have and what they found has worked them. It feels like the doctors just guess at treatment and we are trying one thing after another only to get limited results. I need my daughter to get her life back by controlling this rather than it controlling her. Any suggestions for alternative medicine is also appreciated.
Charlene Message
20 Dec 2008, 10:20 PM

Methotrexate injections once a week work beautifully for my husband. He takes about 8 Asacols a day and no steroids of any kind. His last colonoscopy was clear. A high blood pressure drug Hydrochlorot seems to be keeping any clotting at bay with him. He did suffer from Restless leg syndrome, but, Mirapex stopped it immediately. Some doctors say that Mirapex can be used for fibromyalgia-they don't know why it works, but, sometimes it does. Good luck.
shirley_ann Message
3 Jun 2009, 11:30 PM

I replied to you on the AS community, I have all the same auto-immune diseases your daughter has plus PG and I have been symptom free for a year by using the Specific Carbohydrate Diet, please google it. I currently take no medications except thyroid hormone for autoimmune thryoiditis and vitamin D3. I use 3 probiotics every day as well. This diet is a true miracle.