Ask Dr. Gott » Behcet’s http://askdrgottmd.com Ask Dr Gott MD's Website Sun, 12 Dec 2010 05:01:29 +0000 en hourly 1 http://wordpress.org/?v=3.0.1 Alternative diagnosis, treatment for mouth ulcers http://askdrgottmd.com/alternative-diagnosis-treatment-for-mouth-ulcers/ http://askdrgottmd.com/alternative-diagnosis-treatment-for-mouth-ulcers/#comments Wed, 10 Nov 2010 05:01:53 +0000 Dr. Gott http://askdrgottmd.com/?p=4038 DEAR DR. GOTT: I am writing in reference to the 46-year-old woman who was diagnosed with Behcet’s disease in Memphis, Tenn.

In my mid-40s, I kept having recurring mouth sores. I could have from two to 30 at a time. This made speech and eating difficult. I went to many doctors in the area (also in Memphis) and was diagnosed with many things, including mouth thrush, vitamin B deficiency, an ulcerated digestive system from mouth to anus and an allergic reaction to peanuts and fried foods.

No one could give me any relief, and everywhere I went, I received a different diagnosis.

I decided to go to a chiropractor to see if there might be anything he could do for me. He took an X-ray and told me that a nerve in my neck could be causing the sores. When I began getting adjustments to my neck and spine, my sores went away. I have been sore-free for several years now and can live a normal life again.

I just wanted to share my story with my reader to remind her that not all diagnoses are correct and that she might want to consider a chiropractor. It worked wonders for me.

DEAR READER: I am printing your letter for several reasons. First, you are correct that not all diagnoses are accurate. Second, your situation is totally new to me. Finally, you offer a possible treatment option.

Chiropractors are often-overlooked medical professionals and, based on letters from my readers, are a great source of healing. Most chiropractic treatments are safe or relatively side-effect free. (There are exceptions, such as for people who have clotting disorders or cancer.) A chiropractor can’t replace a general physician, but if these two professionals work together, patients stand the best chance of getting appropriate, effective care.

Thank you for writing and sharing your experience. I hope others can benefit from your advice.

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Behcet’s information is plentiful http://askdrgottmd.com/behcets-information-is-plentiful/ http://askdrgottmd.com/behcets-information-is-plentiful/#comments Fri, 01 Oct 2010 05:01:33 +0000 Dr. Gott http://askdrgottmd.com/?p=3843 DEAR DR. GOTT: My 46-year-old daughter has been diagnosed with Behcet’s disease after several years and after seeing several doctors. She usually has outbreaks in her mouth twice a year, sometimes more often if she has a stressful situation occur.

There don’t appear to be any doctors in the Memphis, Tenn., area who are familiar with this disease. Is there a teaching hospital in the United States that specializes in, or is doing research on, the topic?

DEAR READER: I wrote a rather extensive column regarding Behcet’s disease that can be reviewed by logging onto my website at www.AskDrGottMD.com. Go to the search bar, and type in Behcet’s disease to review the column.

Beyond that, you can go online to the American Behcet’s Disease Association at www.behcets.com; the National Institute of Neurological Disorders and Stroke at www.ninds.nih.gov; or numerous other sites for in-depth information. Beyond that, the National Institutes of Health is sponsoring a new study on Behcet’s and is looking for people with the disease for their work.

Education and patient awareness are vital so patients can know what to expect when diagnosed with a specific condition.

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Hope for Behcet’s patients http://askdrgottmd.com/hope-behcets-patients/ http://askdrgottmd.com/hope-behcets-patients/#comments Sun, 13 Jun 2010 05:01:27 +0000 Dr. Gott http://askdrgottmd.com/wp/?p=3448 DEAR DR. GOTT: This letter is in regards to your recent article concerning the woman with Behcet’s disease.

I was diagnosed with Behcet’s in 1990 and saw 27 doctors before being diagnosed and finding my way to remission. The woman in your article is suffering from one of the worst parts of Behcet’s: the inability to eat due to mouth and throat lesions. She is starving to death, and at this point, food is the medicine that she needs more than anything. This, too, happened to me. I lost 80 pounds and was in bed for months, waiting to die. Finally, a doctor prescribed Costanzi’s solution, a compound used for those with mouth cancer, etc. I know you cannot prescribe medication, but this woman needs to know that Costanzi’s will allow her to swallow again. It kills the pain long enough to take those much-needed bites of food. All she needs to do is swish and swallow, wait a few moments, and then eat or drink.

Behcet’s is a lonely disease. I wish I could impart to this woman and her family that they must never lose hope, and that remission is an absolute possibility. The average remission for a person with Behcet’s is eight years. I have more than doubled that.

Very often, doctors overprescribe. The overload of medications and the side effects are what keep a patient bedridden. In their quest to “cure” me, my doctors went so far as to try chemotherapy and did abdominal surgery, thinking I might have an undetected tumor. I did not. Please know, I do appreciate those efforts and understand them. A great many doctors are not educated about Behcet’s. So people are left to reading medical journals and joining associations. They are left to focus on the symptoms they are either experiencing or are waiting to occur and are frightened to death. In any case, these are all my opinions, and I wouldn’t want to unduly influence someone else.

My main concern in writing is the Costanzi’s solution. It very well might help this poor woman. This compound, first formulated by a hematologist, might bring her a moment of sheer relief. I remember praying for that — 30 seconds of relief! To this day, although I am considered in remission, if my immune system gets knocked or if I get too tired, I might get a lesion, and Costanzi’s saves the day (as does lidocaine gel for lesions elsewhere). This might happen once or twice a year, and who couldn’t live with that? I know what the future holds but live day-to-day, a life full and busy. I wish the same for this woman and her family.

DEAR READER: I have reprinted your letter in its complete form because of the positive ray of hope in dealing with this complicated disorder.

Costanzi’s is an oral remedy developed by Dr. John Costanzi of the University of Texas Medical Branch. Its purpose is to help debilitated patients with conditions such as oral ulcerations related to AIDS, chemotherapy and other conditions. As you pointed out in your attachment, it is comprised of Benadryl elixir, tetracycline liquid, Nystatin oral suspension and Synalar solution. Disclaimers emphatically stress that any healthcare professional who chooses to use this solution does so solely at his or her own risk and the risk of the patient.

Benadryl elixir (diphenhydramine) is an antihistamine and anticholinergic that works by blocking histamine action. Tetracycline is an antibiotic prescribed for fighting bacterial infections. Nystatin treats candidiasis of the mouth; and Synalar (a steroid) treats inflammation. As you can see, this is a whammy of a solution of infection fighters that Costanzi combined successfully to fight oral lesions. It certainly might be a possibility for a Behcet’s patient, who should bring it to the attention of his or her diagnosing physician to determine whether it is worth a try. Because I am not an oncologist, nor have I had any experience in dealing with the solution, I cannot do any more than report your findings. I must add that your outlook is positive and promising — exactly what Behcet’s sufferers need. Thank you for sharing your positive story.

To provide related information, I am sending you a copy of my Health Report “Consumer Tips on Medicines.” Other readers who would like a copy should send a self-addressed stamped No. 10 envelope and a $2 check or money order to Newsletter, P.O. Box 167, Wickliffe, OH 44092-0167. Be sure to mention the title or print an order form off my website at www.AskDrGottMD.com.

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Behcet’s uncommon and troublesome http://askdrgottmd.com/behcets-uncommon-troublesome/ http://askdrgottmd.com/behcets-uncommon-troublesome/#comments Sun, 28 Mar 2010 05:01:33 +0000 Dr. Gott http://askdrgottmd.com/wp/?p=3136 DEAR DR. GOTT: My sister is a 50-year-old widow with four children who has been diagnosed with Behcet’s disease. Her symptoms began last spring with some arthritis. She then developed horrible sores on her body and a terrible one in her throat. Then her eyes became involved. She has had to quit work and is in almost constant pain. Some nights she has to go to the hospital because she cannot stand the pain.

She has seen a number of specialists, but this is tiring for her and usually involves travel. We live in a small Canadian province without much diversity, so it was only by chance that the ophthalmologist she saw recognized the symptoms because he was from another country.

She has been getting injections in her eye and having both eyes checked frequently. Her throat is getting worse. Should she stop eating and drinking and have IVs until her throat heals? When she does see a physician she hasn’t seen before, they question whether she has lupus, Lyme or Crohn’s disease. She’s very discouraged.

Could you tell us what you think the treatment should be and if there are any centers in Canada or the United States that have expertise dealing with this?

DEAR READER: I must agree that your sister was extremely lucky to have had an ophthalmologist who recognized her symptoms and could put a name to her condition. My guess is he may be Asian, since Behcet’s is most common in the Far East and Mediterranean areas. The disease is rare in the United States and Canada, but cases do surface. It is named after a Turkish dermatologist, Hulusi Behcet, who documented aphthous oral ulcers, recurrent eye inflammation and genital lesions in the 1930s. Epidemiology of the disease is not well understood.

The syndrome is an idiopathic disorder classified as a form of vasculitis (blood-vessel inflammation). Because of the diversity of the blood vessels affected, it can occur throughout the body but is most common in the eyes, mouth, lungs, joints, genitals, brain, GI tract and on the skin. When the eyes are affected, inflammation can appear in the front or back, or sometimes in both areas at the same time. When the mouth, lips, tongue and inside of the cheeks are affected, the lesions are often painful, large and numerous. Aneurysms in the lungs can rupture and lead to massive hemorrhaging. Painful ulcers can develop on the vulva or scrotum. Involvement of the central nervous system is a dangerous manifestation. When the disease involves the white matter of the brain and brainstem, stroke, headache, confusion and other conditions can develop. The GI tract can be involved from the mouth to the anus. Inflammatory bowel disorders such as Crohn’s disease share similar side effects that may be difficult to differentiate from Behcet’s.

Diagnosis of Behcet’s can be extremely difficult to clarify. More than anything, symptoms such as oral or genital ulcers and evidence of vasculitis through biopsy of an involved organ are what lead a physician to make the call. Diagnostic guidelines involve two of the following: eye lesions and/or skin lesions a minimum of three times a year; recurrent genital ulcerations; and/or pathergy testing, which is a simple needle prick on the arm. A small red pustule occurring at the site of the needle insertion within two days is classified as positive. Pathergy is not proof positive of the disease, because many people from the Mediterranean will test positive and may not have Behcet’s.

For lesions confined to the mouth, genitals and skin, topical steroids and some oral drugs may be effective. When symptoms become particularly troublesome, corticosteroids may be beneficial. Some people may be placed on low-dose prednisone for control. When eye or central-nervous-system involvement occurs, high doses of prednisone and another form of immunosuppressive treatment are often necessary for control. Thalidomide, a drug banned in the United States because of a connection with birth defects, has been found to be effective in severe mucocutaneous cases of Behcet’s, even though there is a connection with the development of peripheral neuropathy in patients who take it for extended periods of time.

I do not believe that fasting is an answer for your sister, even with her troublesome throat lesion. In terms of finding a physician to provide care, while the condition is uncommon in the United States and Canada, it has been studied and documented extensively. In fact, a 1998 article by David Hellmann, published and copyrighted by the American College of Physicians in the Medical Knowledge Self-Assessment Program, edition 11, Rheumatology Section, covered Behcet’s. Furthermore, your sister could check with the Johns Hopkins Vasculitis Center to determine whether any trials she can participate in are under way. Good luck.

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