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New Treatments

This site trys to share material that is not main stream but has helped someone in the past.  

LDO IFNa Low Dose Interferon Alpha Information
 SNF-BV1 Bovine Extract Information
CAMPATH - humanized monoclonal antibody research
CenterWatch Clinical Trials Listing Service
Helpful Tips from other Behcet's suffers

 
Helpful Tips

If you have a suggestion or tip that you believe would help another BDer improve their qualify of life, please email your tips using the above email icon.  Please include a name and a way for other BDers to contact you in case they have more questions about your suggestion . Your name is not required but if you include it with an email address, it will guarantee it will be added to this list.


  1. The commercial name of the medicine is Trental. It is a magical medicine for people with behcet symptoms, My wife age 27, had many sever Behcets attacks until she could hardly see. Uveitis was the main concern, but having ulcers all the time was also frustrating. any how, I read this article "the link below", and we decide to use this medicine "Trental", and after only two weeks her eye sight is almost 100%, and all the other symptoms disappeared.  Some doctors would not see the benefits of it, but it is proven in the study that it is the only efficient preventive method to fight Behcet. It can be used alone or along with any anti-inflammatory medication, but not with other "Blood fluidizers", (ex. Aspirin..). We have tried all kind of medication, and we lived with the severe side effects. but now, thanks to god and to Trental, we are living a perfectly normal life.
    Hope you all benefit from it.  Submitted by Bashir    http://www.annals.org/cgi/content/full/124/10/891

  2. Antioxidant Called TMG Antioxidants fight the oxidants which degenerate our cells. Antioxidants are usually perfectly safe, taken in the correct amount and pre-checked for drug interactions. Of course, before taking anything at all, you must consult with your doctor. While vitamins A, C and E are famous for their antioxidant properties (as well as their many other beneficial attributes), less known but no less potent herbs and molecules can also be used. Unfortunately, most of the information available on these comes from supplement manufacturers.  This has its drawbacks, but generally speaking, the larger firms who have been in business for a while tend to lead in research of this field, and will usually precede conventional advice by a few years. We found after a lot of research and some trial and error, that for our children, TMG (trimethylglycine) which is found naturally in red beet, is of particular benefit for controlling CNS symptoms and improving brain-function (Incidentally, in Japan, conventional doctors have recently begun prescribing antioxidants for treating CNS symptoms). It took about six weeks for the supplements to work, but after that improvement was seen by the day!  To get more nutritional and supplement information like this, you can visit Tal Kinnersly's BIG website and ask her questions at:   http://www.behcet.org.il/natural%20medicine.htm

  3. New Book called,"BD By Nature", written by Tal Kinnersly can be purchased at: http://www.behcet.org.il/newsE.html
    A wonderful source of information about Behcet's Disease. The book supplies a holistic view of the underlying mechanisms and suggested therapies for anyone dealing with Behcet's disease. This author did an excellent job at pointing out common nutritional deficiencies which complicate BDers overall health. BDers commonly have higher nutritional needs and if a body does not get what it needs, BDers will likely progress toward the more serious aspects of this disorder. !!! Excellent book - a must have for anyone dealing with Behcet's Disease. This book is available on-line in PDF format. The book cost $22, $20 for BIG members (membership is free and easy to have by all)

  4. I have found a good source for vitamins.  It is at www.vitaminshoppe.com.  BDers need several vitamins to help improve their quality of life.

  5. Need help with the cost of drug?  The name of this resource is The Medicine Program - www.themedicineprogram.com
    1-573-996-7300.  This is a very reputable company that works to get many financially challenged people free medication. They work with many drug manufacturers who sponsor patient assistance programs. There are no membership fees - just $5.00 for an application fee for each medication that you are requesting. If you are turned down by the drug company, the medicine program will reimburse your $5.

  6. Terry Gibson found a drug company name North American Meds that is cheaper filling her RXs. To contact North American Meds: (toll-free) 1-866-865-6337.  Have your doctor fax your prescription to 1-866-421-3800.  It costs $10 for shipping your order.  It takes about 7 to 10 days to get them. North American Meds fills your prescription from a Canadian pharmacy (all legal) They take credit cards and as well as m/o and checks.  Visit www.northamericanmeds for more price quotes, comparisons and info.


  7. Vaginal ulcers or sores make life difficult especially when you need to go to the bathroom.  When urine gets on any sore, it is painful or burns like wild fire. Ladies have found that using an old toilet paper roll (or some similar item) helps reduce the burning and pain.  Urinating through a cardboard paper roll keeps the urine away from the sores and this helps reduce the pain.

  8. For those awful oral ulcers, the famous Magic Mouthwash is recommended by many BDers and doctors.  The Magic Mouthwash needs to be prescribed by your doctor and then prepared by your pharmacist. It helps relieve pain if you use about 5 to 10cc before meals or as needed.


      Magic Mouthwash Ingredients
  9. Dealing with depression or a general uneasy feeling?  If you are experiencing depression or an uneasy feeling all the time and there appears to be no reason for these kind of uncomfortable emotion;  it possible this is a nutritional problem. People have found that fish oil helps elevate these symptoms.  Scott Ramsey is one of those that wanted to share his experience.  He has suffered from an unexplained sense of uneasiness and could not find the cause or a solution until he read this article.  http://abcnews.go.com/sections/wnt/MedicineCuttingEdge/brain030819_prozac.html
    Scott started using Fish Oil and has noticed a marked improvement.  If you have any questions or you would like to know more about this improved Scott's life, please send email to: scott2040@attbi.com

  10. This site was recommended by Cathy Harrison.  This website offers a few tips for getting a proper diagnosis if you have an autoimmune disease.  It is so important to get a diagnosis both personally and emotionally.  Unfortunately it is difficult to get a diagnosis in the US for an orphan disease like Behcet's. Check out:  http://www.aarda.org/article18.html

  11. For those that suffer from psoriasis or some other skin disorder common with BD; a BDer found a product line made from Hemp extremely beneficial.  An online store called the "Body Shop" sells hemp body washes, shampoos and pre-shampoo's that solved his psoriasis problems.  The Body Shop website is located at:  http://www.bodyshop.com.   I did a search on this website for "hemp" and all hemp skin care products were listed.

  12. Terry Gibson has a suggestion for those using Prednisone.  A lot of people have severe reactions to this drug.  She recommends asking your doctor to prescribe Cortef/Hyrdrocort.  She can get 90 tabs of 20 mg of the generic Hydrocort for under $7 and it is so much better than Pred.  Terry does not have as much trouble using this drug and it does not seem to impact her life like the Prednisone does.


  13. This was in January's issue of "O" Magazine. Here is advice on how to ensure you get an A-plus with your medical care.
    • Before you visit your doctor, make a list of questions and ask them during your appointment. If you can't think of "good" questions, you can visit http://www.ahrq.gov or write them at AHRQ, 2101 East Jefferson Street, Suite 501, Rockville, MD 20852.
    • Don't leave your medical appointment until ALL of your questions have been answered. Even if the doctor seems to get impatient, it's their JOB to explain and your JOB not to say you understand when you DON'T.
    • It can be easy to tune out bad news. If you're getting test results, take a friend or family member to take notes. You can even bring a tape recorder. A good doctor shouldn't object to either.
    • If you're discussing a new diagnosis or treatment, get a SECOND opinion. A good doctor will encourage you to do this.
    • Bring a list of ALL the medications you're taking and the dosage.  Don't forget to include any herbal supplements/remedies, vitamins and/or over the counter medication you may be taking. Sometimes your local hospital volunteers will offer a "Vial of Life" which has a living will, papers to fill out for medications, doctors, etc. They also give instructions as to where to place these important papers.
    • If you're seeing a new doctor, make sure that your old records have been sent ahead of time.
    • To spare yourself aggravation, call the office before the appointment to see whether the doctor is running late.
    • If a doctor calls you by your first name, feel free to do the same. You'll be making it clear that you'll accord the doctor the same respect that they offer you.
    • A few days before any lab test, ask for an instruction sheet so you can be prepared for the test.
    • Once you've been diagnosed, if that's the case, talk to other people who have the same condition, research the web. www.nim.nih.gov/medlineplus is a good place to start. Smart patients can become an expert on their illness
    • In the hospital, treats are a great way to soften hearts, lift spirits and make yourself real to the staff.
    • Stay pleasantly feisty by reminding yourself that the doctors and nurses aren't doing you a favor by taking care of you, you are PAYING FOR THEIR SERVICES. You are ENTITLED to GOOD CARE and a lot more!! To view a copy of the Patients Bill of Rights visit www.consumer.gov/qualityhealth



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