Becoming informed about Behcet's

[amietamant]

I wanted to point out to Xandi that I spent 10 DAYS (not years) as a hospital inpatient in NIH's Behcet's Natural History Study (Washington D.C. / Bethesda) where I was evaluated by a team of doctors and tested almost to death. It was fascinating and of course, I was confirmed as having complete Behcet's Disease. You can Google the study to learn more about it.

I have gained knowledge about Behcet's through 25 years of study, reading, attending international conferences, writing, speaking/teaching, research, editing/reviewing Behcet's books, and interaction with hundreds of other patients and Behcet's specialists. It's been helpful that I have an advanced health degree so I can understand everything, but beyond that I'm mostly self-taught.

I have also represented Behcet's organizations at medical conferences worldwide and occasionally correspond directly with top BD researchers to clarify their conclusions. In 2010, I spoke at the Behcet's Patient Conference in London about the dangers of fungal infections for patients taking biologics (anti-TNF a drugs like Enbrel, Remicade, Humira, Cimzia, etc.). I also attended the ICBD physician presentations and talked with specialists at their London gatherings. In 2014, I will be attending the ICBD international conference in Paris, health allowing.

Before my Behcet's advanced to include neuro symptoms, I worked for a rheumatology nonprofit organization educating physicians, allied health professionals, and patients about arthritis, lupus, fibromyalgia, and disability issues. Prior to that I was a Naval Intelligence Officer, but was medically retired for Behcet's Disease.

Of course, since I have Behcet's myself and am on full disability, I'm in no position to answer everyone's personal questions or do research for them. (I only have so many spoons in a day too.) Much of the information is already out there and available by searching Google (including Google Scholar, Google Books, Google Images) and PubMed.

My best advice is to sort your search results by most recent because information is always changing and built upon previous research findings. Also, when searching, make sure to include alternative terms (e.g. aphthous, lesions, cutaneous, vasculitis, synovitis, cognitive, pulmonary etc.) to bring up articles that may use these words instead of more common ones.

If anyone's interested, you can read years of my posts by joining the Yahoo behcet-support online group and doing a search for what I've written (search for Lisa). I saw that there are over 2,500 posts with my name. I only started posting a few things with this group recently because there is so much need out there.

However, I encourage patients to Google their questions/topics, as well as do searches on the online support groups, before posting open or specific questions because almost everything has already been said or answered before. I understand that reading the research is difficult for non-medical people and that many terms are unfamiliar. But since we'll likely deal with this rare disease for many years, or a lifetime, it's worth becoming informed about our condition, medications, tests, and new research findings.

Best wishes to all

[xandii]

Hi Hun,

Quite a big difference then LOL. Remind me to get some new glasses !

I was really looking forward to reading about a 10 year research programme Not that the ten day reading isn't going to be very interesting to read (thanks for telling me where to find it hun) but I had automatically devised a picture in my head of being able to follow a ten year study and learn a lot. Oh well...best laid plans and all that.

Thanks also for pointing me at all the things you have written on the Yahoo site, I didn't know this even existed so will check this out in the very near future and trawl my way through all the information there. As you say, I need to start logging the info in date order or I am going to get really confused and bogged down in the details.

I guess it was pretty naive of me that you could just point me to a list of studies or better still hand me the name of a book about BD you may have written but hey...2500 articles must virtually constitute a book anyway doesn't it ?

I don't think I will ever reach your standard of knowledge and expertese on the subject.....there aren't enough years left to catch up for me now !

Just wanted to say thanks anyway for the details you have given me and apologies for my over enthusiasm regarding your 10 day study program.

kindest regards,

big hugs xx

[amietamant]

The NIH Behcet's study is ongoing and its results have not been published. I was simply a study patient, although some of the doctors admitted I probably knew more than they did about the disease. Some results about specific parts of the NIH study have been released, such as pharmpro.com/news/2013/01/g...

There are books on Behcet's Disease (see Amazon.com), as long as you ignore those "cut and paste" publications that try to fool buyers like the ones titled "Toolkit," "Empowered," and "Patient Sourcebook." I own all the reputable books. For patients, I recommend Joanne Zeis's "Essential Guide to Behcet's Disease," although it's in need of updating. You can read portions of it online. The 2010 Yazici/Yazici Behcet's Syndrome book is heavily medical and expensive; the Sungnack Lee book has the best photos.

For medical summaries about Behcet's, search Google for the terms Hindawi Behcet's and you will pull up a series of 2011 articles. I read (or skim) every article published on PubMed about Behcet's, as well as papers presented at Behcet's conferences along with the posters and oral presentations. I doubt any doctor has the time or motivation to read all this stuff, but I try to keep up with it and pass along info I find useful to doctors and patients.

What I have posted to the Yahoo behcet-support website consists of answers to questions others have asked in the support group, plus my own experiences and links to reference articles. Not on the support group are private emails I have sent doctors and other patients. There are no complete summaries of info everyone should know or need, but I supposed that's true with any disease.

I do what I can to help others because I remember how I felt being diagnosed in 1988, pre-internet when I only had one pamphlet about BD and a couple articles copied from a medical library. Today the "world's our oyster" when it comes to what we can learn and with whom we can communicate.

Hugs

[xandii]

Sorry to be a pain hun, just one more quick question !

The name Joanne Zeis seems to ring a bell with me somewhere buried deep from quite a while back.

It may be just that I have heard of her book but I had an idea she was the American lady who did a short TV programme over here about 7 years ago all about her own BD? Something like that timespan anyway ?

Am I thinking of the right lady here ?

If it is the one I'm thinking about , she must have gone on to do a lot more than just the small piece I saw her in over the last few years and I would be very interested to follow up on any of her work. I did have a video of the actual programme but for the life of me I don't know where it is anymore.

thanks

big hugs xx

[toothfairy in reply to xandii]

She is involved with the Facebook site if you are interested. Seems to be a lot of research and articles posted on there too if thats what you are after.

To be honest, I feel this site strikes the happy medium for me, friendly, a place to come, chat and air the ups and downs of life with like minded people; comparing ailments and remedies, without being intense, and the odd bit of interesting research thrown in.

[amietamant]

Yes, you're thinking of the right woman. Her "Mystery Diagnosis" video, as well as a couple other American Behcet's Disease Association videos plus some made by patients and doctors, are availabe on YouTube. Just go to YouTube and search for behcet's.

Joanne Zeis is one busy woman, mom, and wife. She's mostly continued to work full time with her Behcet's, even though eye inflammation has been a recurring problem. We've met a number of times and I consider her a good friend of mine.

[amietamant]

A few more comments:

When I posted info on how to see some photos of my visible Behcet's symptoms, I didn't explain that those pics have been taken over the past two years, which is how long it's been since I've been able to take effective BD medications. For many years, I took a variety of drugs that suppressed or reduced my Behcet's symptoms, but they either wore out on me or began causing too many intolerable side effects. I'm down to just taking NSAIDs and a variety of minor drugs to treat side effects, thus the photos.

I'm fortunate the the worst BD symptoms have disappeared or calmed down for me, although I still struggle with some ulcers, joint pain, GI problems, fatigue, and headaches almost every day. Doctors will no longer prescribe biologics (e.g. Enbrel, Remicade, etc.) for me because I nearly died in 2007 of invasive fungal infections due to being so immunosuppressed. Prednisone now causes all-over edema for me even though I used it successfully off and on for many years.

I wanted to reassure Xandi that it won't take anyone as long as I've been at it to get up to speed on Behcet's research because much of the stuff I learned 10-20 years ago is outdated... except for the personal stories I've heard. In my previous posts, I've given some links and tips that will give anyone a good start on their studies.

But there are still gems of small studies out there from years ago that haven't been fully followed up on, probably because there isn't much money to be made in drug production. In particular, I'm a fan of pentoxifylline and nicotine patches for Behcet's ulcers, even though I can't take either anymore.

Hugs to all

[xandii in reply to amietamant]

I just wanted to thank you so much for taking the time to point me in the general directions of where to start my study program. I have been looking at doing something along these lines for a couple of years now to give me a focus and to be able to study at my own pace. Of course, the OU would be a perfect platform on which to do this.

I find my worst enemy is of course, the BD which is restrictive physically with extreme fatigue and joint problems but as I spend an awful lot of time (90%) in my 8 by8 bedroom with my OH flitting in and out and my 2 cats by my side, I find my brain going to pot and in need of stimulation.

My interest has naturally been driven towards BD and I think my next step is to read, read and read more all the things you have directed me towards and then sort my newly gained education into some sort of order where I can establish what courses are available that I may find useful in the final direction I decide to go with regard to the whole massive BD universe.

My previous attempts at finding all the right places to look on the interent etc.... have resulted in a couple of hours doing the searching and not a lot of reading the results I find so the tips about logging it all in date order may sound logical and something any idiot like me should have thought of but my brain just doesn't focus in a logical order anymore and your pointers have been very useful to me to start organising my life again. At least now I can spend my 2 hours ability to focus somewhere I know there is a wealth of information and avoid the fumbling around that has plagued my progress so far.

Thanks so much for your help Hun. Mwah !

big hugs xx