Behcet’s Disease Self Help

Behcet’s disease (BD) is an inflammatory autoimmune disease that affects blood vessels throughout the body, causing vasculitis, an inflammation of the blood or lymph vessel. It was first recognized in 1937 by a Turkish doctor, Hulusi Behcet.

It is also known as Silk Road Disease because the incidence is greatest in the Mediterranean, the Middle East, and the Far East, although there have been cases in people of all nationalities and descent. In the United States, it is more common in women than in men.

In the Middle Eastern countries, it is more common in men than women. Symptoms most commonly appear in one’s twenties or thirties but can begin anytime. Fifteen thousand to 20,000 Americans have been diagnosed, and many more are undiagnosed.

Symptoms vary depending on where the inflammation is in your body and are due to an overactive immune system. It is chronic and the course is unpredictable. Some people are debilitated by the disease, while a lucky few may go into complete remission.

The most common symptoms are recurrent sores in the mouth and genitals and eye inflammation. The sores often have a white or yellow center with redness at the edges and are very painful. There may also be additional symptoms, including skin lesions, painful joints, bowel inflammation, and meningitis.

Symptoms may involve the nervous system, causing Parkinson-like symptoms; memory loss; impaired speech; hearing loss; loss of balance; blindness; headaches; stroke; and digestive complications, such as bloating, gas, bloody stools, and diarrhea.

About 15 percent of people with BD also have heart disease complications. Sufferers sometimes experience a profound sense of fatigue. BD usually presents itself in a rhythm of remissions and flare-ups of disease activity. It may be worsened by extremes of hot and cold climates or menstrual cycles.

There is no known cause for Behcet’s disease. It is suspected that an environmental exposure, such as a viral or bacterial infection, can trigger the illness in people who are already genetically susceptible. A large body of research focuses on the insufficiency of antioxidant nutrients and enzymes in people with BD.

Glutathione peroxidase levels are lower in people with BD. Glutathione is an enzyme that depends upon vitamin E and selenium for optimal function. Superoxide dismutase (SOD) activity is also diminished. It appears that production of nitric oxide (NO) is excessive in people with BD.

Use of antioxidant nutrients can bring NO into control. One recent study examined levels of vitamin C and malondialdehyde in people with BD. Malondialdehyde is a metabolite that is produced when there is lipid-peroxidation, which is a chain reaction requiring antioxidant nutrients.

Vitamin C levels were lower in people with BD than in controls and malondialdehyde levels were higher than in controls. Vitamin C levels were low in people with BD even when the illness was in remission. Different researchers looked at vascular health and found that one hour after IV vitamin C was given there was improved function in the blood vessels.

Another study looked at vitamin E supplementation in BD. It was found that vitamins A and E, beta-carotene, and glutathione levels were lower in people with BD than in controls. When given vitamin E supplementation for six weeks, levels of blood antioxidants rose in the treatment group and were higher than in the untreated control groups.

BD sufferers have significantly increased intestinal permeability. Leaky gut syndrome can be aggravated by use of certain foods. Use of dairy products, gluten-containing foods (see section on celiac disease in Chapter 10), and other foods may trigger an immune response and symptoms.

Testing for food and environmental sensitivities and allergies makes sense. Use of nutrients such as glutamine, quercetin, probiotics, and antioxidants can be helpful. See Chapter 5 or my booklet called Leaky Gut Syndrome. No specific diagnostic test exists for Behcet’s disease.

Diagnosis is made by elimination of other possibilities and through symptom analysis and is best done by a physician experienced in the treatment of Behcet’s patients. A list of patient-recommended physicians is available at the American Behcet’s Disease Association website at

BD may begin gradually at first, with sores that come and go and may be undiagnosed for a long time; it may also be misdiagnosed as herpes. Like patients with chronic fatigue syndrome, people with BD are often told it’s “all in your head” because they look so healthy.

Most of the inflammations are internal and not readily apparent to family and friends. To be diagnosed with BD, a person must have had recurrent oral ulcers, at least three times in a year. They must also meet two of four additional criteria: recurrent genital ulcers, eye lesions, skin lesions, or a positive “pathergy test.”

The pathergy test is simple. The forearm is pricked with a sterile needle, and if a small red bump or pustule occurs, the result is positive. This is very useful in Middle-Eastern populations, where 70 percent of people with BD test positive, but less so in Europe and America where the majority test negative.

Conventional treatments are similar to those for other autoimmune conditions and involve the use of immunosuppressive medications such as steroids, interferon alpha 2A and B, Levamisole, cyclosporine, Cytoxan, colchicine, Trental, and thalidomide. Not a group to be dealt with lightly.

Healing Options

After testing, you’ll have a better idea of any underlying problems. Look up related sections in this book to help you with the specifics. Then detoxify if necessary, clean up your diet, take probiotics, and increase intake of vitamins, minerals, and other antioxidants.

  • Try metabolic cleansing. Metabolic cleansing involves going on a hypoallergenic food plan for one to three weeks and taking a nutrient-rich protein powder designed to help restore your liver’s detoxification capacities.
  • Take antioxidants. You’ll find fruits and vegetables to be great natural sources of antioxidants. Make sure you eat at least five to twelve servings daily. They probably won’t give enough protection by themselves so add nutritional supplements.

Vitamin C, vitamin E, glutathione, trace minerals, and other antioxidants may be helpful in decreasing the incidence and severity of flare-ups. Research shows that BD patients have an increased need for antioxidants.

Therefore, supplementation with trace elements involved in the antioxidative processes may increase scavenger enzyme activities, and consequently, an improvement in clinical symptoms may be expected.

While much more research is needed in this area, there is no reason not to add them to your daily routine. Take an antioxidant combination with carotenoids, selenium, glutathione, or N-acetyl cysteine, and that may contain lipoic acid, grape seed extract, pycnogenol, or other antioxidant nutrients.

  • Take vitamin E. Take 800 to 1,000 IU d-alpha tocopherol with mixed tocopherols daily.
  • Take vitamin C. Take a minimum of 2,000 milligrams of vitamin C daily.
  • Try BG-104. This is a Chinese herbal supplement. One study looked at the effectiveness of BG-104 in people with BD and Sjögren’s diseases. Both BG-104 and vitamin E were found to have an anti-inflammatory effect. They enhanced antioxidant activity to reduced sedimentation rates (a measure of tissue break and number of neutrophils (white blood cells), and lowered C-reactive protein levels, which is a measure of inflammation.
  • Balance your pH. Cells work best in a neutral pH. When we have long-standing illness we tend to have acidic urine. Also make use of baking soda and Epsom salt baths. Use ½ cup of each and soak on a regular basis.
  • Try acupuncture. There is limited research in this area, but the one study showed a positive effect on improving immune function and trace mineral status; however, a 2002 letter in the British Journal of Ophthalmology (Murray and Aboteen, 86, 2002: 476–77) discussed a BD patient who developed pathergy-like pustules at the sites of acupuncture needle placement, indicating caution in the use of this treatment.
  • Investigate allergies and sensitivities. Although more research needs to be done in this area, one study indicated an immune response when patients were given cow’s milk. Eliminate dairy products for two weeks. See if you have improvement in symptoms.

Then add back cultured dairy, such as yogurt, kefir, and cottage cheese. See how you feel. It may be necessary to avoid dairy products. Rule out other food sensitivities with the elimination-provocation diet and/or food-allergy or -sensitivity blood testing. Cigarettes, toothpaste, mouthwash, and flavored dental floss can cause irritation.

According to Joanne Zeis, the author of several books on Behcet’s disease, “ironically, according to some research studies people who quit smoking cigarettes sometimes develop excessive oral ulcers, which can be a real problem for BD patients who quit—some go right back to smoking again. Toothpastes containing sodium lauryl sulfate may create aphthous ulcers in some BD patients, and should be avoided.”

  • Use probiotics. Lactobacillus acidophilus is often beneficial in prevention and treatment of canker sores and may be useful in BD. No clinical research has been done in this area, but it makes sense. Take 1 to 2 capsules or ¼ to ½ teaspoon of the powder three times daily; take between meals.
  • Practice stress-management skills. Stress can contribute to a flare-up of the disease. Development of strong support systems is vital. This is a lifelong illness and you can greatly benefit from support groups, many of which are available on the Internet. Exchange of information and dialogue with others who understand what you are going through can expedite recovery. Take time for yourself, rest, and relax.