Behcet's Disease, know anyone in the US with it?

Hey all, I've got a friend with an autoimmune disease called Behcet's disease. She's looking for someone else with the disease to correspond with. Below are the symptoms and G's story.

Email me at contact@addisonssupport.com if you have Behcet's or know someone with it and I will forward the email to her.

In talking to G, she mentioned something interestingthat might help others who were in her position. Her vaginal ulcers were diagnosed as herpes abut she never tested positive for herpes. For years she was given drugs to treat the herpes but because she did not have herpes, the drugs did not help her at all. If this sounds familiar to you, you may want to check out the American Behcet's site. Also, ulcers can occur from the mouth to the colon causing bleeding in the intestinal tract (L PLEASE CHECK THIS OUT!! SEE SYMPTOMS LIST)

G's STORY

I developed chicken pox at age 27 (18 years ago) and I developed my first flare of a single sore (vaginallly) that ended up having to be lanced. I didn't have many flares at first but as the years passed they became more frequent. The last 6-8 years have been the worst. My doc at the time decided I had genital herpes. (Not the sexually transmitted kind but the canker sore kind). Type A I think ??? I have been treated for the last 6 years with Acyclovir (zovirax). To no avail of course. Turns out that my tests for herpes did not show anything solid to justify treatment. Years ago I explained to one the many docs at Kaiser about the sores I get on my shins and in my jaws and he said that it could be blah, blah, blah, but I am sure you don't have that. I can't remember what he called it. Makes me wonder if this couldn't have been cleared up then.

Over the last 2 years I have had to miss some work over all this and I missed 4 weeks of work in the last year because I began developing fevers with a flare. The last 2 years I have not lived without a flare. It got to the point where I was just waiting to die and be done. Not only is there so much physical agony, but it also wears on your emotions. You feel isolated, diseased, untouchable, ugly, stinky and down right repulsed at the idea of yourself. And of course if we feel like that so does everyone around you. At least that what I often think. It has pretty much taken away part of my relationship with my husband. Although he is very compassionate, there is no way he can fully understand what that effect has had on me.

My behcet's was kindof accidentally diagnosed. (A blessing in disguise it what I call it)

My sister finally got me to switch to a different gynecologist and offered to go with me. Two days before my appointment I had another flare. This time I developed the sores everywhere including my shins. I decided I should shave my legs before my appointment and ended up causing cellulitis which is a bacteria entering the skin through a open pore or an open wound. My infection got so bad that I could not walk. I went to the emergency room and they decided to admit me on the grounds that they could not control the pain. Once at the hospital, I was being treated with two different antibiotics and plenty of good pain medication. Morphine being the best until it made me sick. I spiked a fever and had yet another flare while I was hospitalized. My doc was going to send me home, (you know, the hurry up and get them out story), and I pointed out that I was having another flare and that the sores were on the opposite leg as well. Ah, the light went on and the rest is history. He got the on call Rheumatologist, who I wish was mine, and she took one look at it and knew what is was. She normally doesn't do vaginal exams but wanted to be sure so she proceeded with the exam. She was so confident with her diagnosis that she ordered and brain scan to be sure that there were no lesions there. She took me off the zovirax and started me on prednisone and by the next morning my fever had broken and my sores were beginning to heal. Talk about being on a high. I suddenly thought of prednisone as my happy pill. Finally I could begin to have a life again. Except that I didn't think I would be on this for so long. I suppose it really hasn't been that long considering how long I have been dealing with this but it driving me crazy. I feel very blessed to have finally been diagnosed with something. It's just been an emotional roller coaster. It's true though that the only way they can diagnose this disease is to go by all your symptoms. There is no actual test that can determine that you absolutely do have it. Sometimes I still feel like it a crap shoot trying to find what will work for me.

I am actually on 20 mg of prednisone. Every time I try to ease off I have what they call a flare and have to go right back up again. I'm like you. I am small boned and have never really been overweight. Just out of shape. ha-ha. Now though, I am gaining weight and I have not increased my food intake. In fact I am trying to eat less. I too am very cranky and teary alot. On top of that I feel as though I feel sorry for myself too much because of it.

With the prednisone, I am also taking 10mg per week of methotrexate, which is actually a chemo drug of some sort. It's supposed to slow the immune system somewhat, I guess. My doctor tries to be thorough. Not too many doctors are very familiar with Behcet's and I belong to Kaiser so it's hard to find someone who actually specializes in the disease. Along with the prednisone and the methotrexate I take 3mg of Folic Acid daily and Prilosec daily. I am beginning to feel like a walking pharmacy. I will take 2 months or more to know the methotrexate will work and I have only been on it for 6 weeks. I tried the least toxic drug first (colchizine) which of course did not work. The info sheet on the methotrexate says to contact your doc if this or that occurs, in my case it threw me into menopause. Now instead of trusting that I know my own body he's sending me to an OBGYN. Can't wait. The sores are better but only if I'm on a high dose of prednisone. However, If I go walking, bike riding, clean the house or just break a sweat for some reason I will still become tender in all the areas that the sores occur.

Thanks Drymax Sports Socks!

Bob at Drymax Sport Socks read my blog after I did the Grand Teton Races 50. He saw the pictures of my icky, blistered feet and offered to send me a sample pack of socks that keep feet drier and prevent blisters. In exchange, I'm supposed to give him candid feedback about the socks. Well, so far I'm super impressed! He sent me 16 pairs of socks!!!! The will cover all different seasons and conditions, hot weather, cold weather, trail running, etc. I can't wait to try them out so I'm going to use a pair tomorrow. He also sent me some great information on the socks (see the book? Like I'm not compulsive enough already, I'm going to be looking in the book to see which socks I should be trying out so I'm wearing the perfect socks for the conditions).

Drymax Sport Socks also has a blog. You should check it out, it's very interesting!! Drymax makes a lot of runners, athletes and sock wearers very happy. I can't wait until tomorrow to wear my new socks!

Thanks Bob at Drymax Sports Socks!

So true!

You're never too old to become younger.
- Mae West

Rainbows and fall colors in the Tetons

A rainbow that goes into the South Fork of the Snake River. I couldn't find the pot of gold but I know I was very close to it!

Hey everyone. It's been a busy week for me here. I haven't run much. I did get some pretty nice pictures though. Fall is definitely here.

I'm working hard at the ranch where I caretake. The owners are coming in at the end of the week and I've got to get the house ready. Every day while cleaning and taking care of projects, I walk between 3 and 4 miles! Although I'm getting no running in (except Sunday, kind of), I'm at least getting SOME exercise.

Saturday I went shopping and for lunch with Shelley. She's the one soliciting donations of clothing for a quilt (see side bar) that will benefit NORD. We had a GREAT TIME and laughed our way through Sam's Club. On the way home, I followed rainbows for 50 miles. I took 30 pictures but will only torture you with a few.

Sunday I went for a run and missed the trail I was supposed to take. The "trail" was straight up and so steep down that I could barely even walk it. I was supposed to come out miles from where I went in and ended up coming out at the same place 2.5 hours later!

Enjoy the pictures.

Cisco at the DD Ranch

Zane, my son, looking handsome for debate class

The rainbow again in Swan Valley

Fall foliage in Henderson Canyon, Big Hole mountains

Unusually shaped aspen tree

The "trail" that I was on Sunday. If you look closely, you can see a faint double track. The trail looked like it dropped off the edge of the mountain. It nearly did!

Bear poop with lots of added huckleberry goodness

Me tiptoeing through bear poop, it was everywhere. I was yelling a lot to scare off the bears.


Beautiful scenery miles from town (insert sarcasm here)

Running slows the aging clock, Stanford researchers find

If you want to live longer, get off the couch and get some exercise people! Emphasis in the article below is mine.

Running slows the aging clock, Stanford researchers find
By ERIN DIGITALE

STANFORD, Calif. — Regular running slows the effects of aging, according to a new study from the Stanford University School of Medicine that has tracked 500 older runners for more than 20 years. Elderly runners have fewer disabilities, a longer span of active life and are half as likely as aging nonrunners to die early deaths, the research found.“The study has a very pro-exercise message,” said James Fries, MD, an emeritus professor of medicine at the medical school and the study’s senior author. “If you had to pick one thing to make people healthier as they age, it would be aerobic exercise.” The new findings appear in the Aug. 11 issue of the Archives of Internal Medicine.When Fries and his team began this research in 1984, many scientists thought vigorous exercise would do older folks more harm than good. Some feared the long-term effect of the then-new jogging craze would be floods of orthopedic injuries, with older runners permanently hobbled by their exercise habit. Fries had a different hypothesis: he thought regular exercise would extend high-quality, disability-free life. Keeping the body moving, he speculated, wouldn’t necessarily extend longevity, but it would compress the period at the end of life when people couldn’t carry out daily tasks on their own. That idea came to be known as “the compression of morbidity theory.”Fries’ team began tracking 538 runners over age 50, comparing them to a similar group of nonrunners. The subjects, now in their 70s and 80s, have answered yearly questionnaires about their ability to perform everyday activities such as walking, dressing and grooming, getting out of a chair and gripping objects. The researchers have used national death records to learn which participants died, and why. Nineteen years into the study, 34 percent of the nonrunners had died, compared to only 15 percent of the runners. At the beginning of the study, the runners ran an average of about four hours a week. After 21 years, their running time declined to an average of 76 minutes per week, but they were still seeing health benefits from running.On average both groups in the study became more disabled after 21 years of aging, but for runners the onset of disability started later. “Runners’ initial disability was 16 years later than nonrunners,’” Fries said. “By and large, the runners have stayed healthy.”Not only did running delay disability, but the gap between runners’ and nonrunners’ abilities got bigger with time. “We did not expect this,” Fries said, noting that the increasing gap between the groups has been apparent for several years now. “The health benefits of exercise are greater than we thought.”Fries was surprised the gap between runners and nonrunners continues to widen even as his subjects entered their ninth decade of life. The effect was probably due to runners’ greater lean body mass and healthier habits in general, he said. “We don’t think this effect can go on forever,” Fries added. “We know that deaths come one to a customer. Eventually we will have a 100 percent mortality rate in both groups.”But so far, the effect of running on delaying death has also been more dramatic than the scientists expected. Not surprisingly, running has slowed cardiovascular deaths. However, it has also been associated with fewer early deaths from cancer, neurological disease, infections and other causes.And the dire injury predictions other scientists made for runners have fallen completely flat. Fries and his colleagues published a companion paper in the August issue of the American Journal of Preventive Medicine showing running was not associated with greater rates of osteoarthritis in their elderly runners. Runners also do not require more total knee replacements than nonrunners, Fries said. “Running straight ahead without pain is not harmful,” he said, adding that running seems safer for the joints than high-impact sports such as football, or unnatural motions like standing en pointe in ballet.“When we first began, there was skepticism about our ideas,” Fries said. “Now, many other findings go in the same direction.”Fries, 69, takes his own advice on aging: he’s an accomplished runner, mountaineer and outdoor adventurer. Hanging on his office wall is a photo he jokingly describes as “me, running around the world in two minutes.” In the dazzling image of blue sky and white ice, Fries makes a tiny lap around the North Pole.Fries collaborated with Stanford colleagues Eliza Chakravarty, MD, MS, an assistant professor of medicine; Helen Hubert, PhD, a researcher now retired from Stanford, and Vijaya Lingala, PhD, a research software developer. The research was supported by grants from the National Institute of Arthritis and Musculoskeletal and Skin Diseases and by the National Institute on Aging.
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