DIAGNOSING LUPUS (SLE) 2nd of 2 emails, Thyroid Information
Date: Fri, 16 Jun 2000 13:57:50 +1200
From: "Susan and Roy"
elvis.nz@internet.co.nzTo: "Micheline and Tony Lambert - Canada"
delphine1939@videotron.caFrom: USSW
Date: Friday, 19 December 1997 02:14
Subject: Fwd: diagnosing lupus (sle) 2nd of 2 emails, Thyroid information
please forward... happy Holidays and God Bless you all!
Brenda
From: LupusInfo
LupusInfo@aol.comTo:
AIRLINETKT@aol.comSubject: Re: diagnosing lupus (sle) 2nd of 2 emails, Thyroid information
Brenda,
Here is some further information which addresses some of your questions. We hope it is of help to you.
Sincerely,
Patricia Leisy
Online Health Educator
Lupus Foundation of America
1300 Piccard Drive, Suite 200
Rockville, MD 20850
U.S.A.
301-670-9292
800-558-0121 (24 hour answering machine)
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From The Lupus Book by Daniel J. Wallace, M.D. Page 125
"The thyroid gland in the neck helps regulate our metabolism and it affects how we feel by controlling the production of thyroid hormone. Thyroid-related symptoms-such as fatigue, palpitations, fevers, being too hot or too cold, and joint aches-can often be mistaken for SLE. Autoimmune disease of the thyroid is characterized by detectable levels of anti- thyroid antibodies in the blood. Clinically manifested as Graves' disease or Hashimoto's thyroiditis, autoimmune thyroid disease initially appears as hyperthyroidism (overactive thyroid) and ultimately develops into hypothyroidism (underactive thyroid). Approximately 10 percent of lupus patients have thyroid antibodies, and autoimmune thyroiditis occasionally coexists with SLE. Many of these individuals also have Sjogren's syndrome.Conversely, many people with primary autoimmune thyroid disease have positive ANA tests without evidence of lupus. Whether or not autoimmune thyroiditis is present, some 1 to 15 percent of those with SLE studied at any point are hyperthyroid and 1 to 10 percent are hypothyroid. In other words, thyroid abnormalities are commonly noted in lupus and are related to antithyroid antibodies about half of the time."
For further information on THYROID DISEASE you may contact:
The American Thyroid Association, Inc.
Montefiore Medical Center
111 East 210th Street
Bronx, New York 10467
Tel: 1-800-542-6687 (they prefer calls to mail)
FAX : 718-882-6085
E-mail :
admin@thyroid.org------------------------------------------------
Thyroid Foundation of America, Inc.
Ruth Sleeper Hall, RSL 350
40 Parkman St.
Boston, MA 02114
Tel: 617-726-8500 1-800-832-8321
FAX (617)726-4136
Email:
tfa@clark.net------------------------------------------------------------------
Thyroiditis, HASHIMOTO's
You can also find Hashimoto's thyroiditis information on the Family Internet website at:
------------------------------------------------------------------
Thyroid Home Page
- An online service for people seeking information and treatment for thyroid disorders. Offers patient information and links to additional resources. Also offers an "Ask the Doctor" online service.
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To locate the FDA website and to search for information on copper
bracelets, direct your browser to:
http://www.lib.lsu.edu/gov/fedgov.html
The following is an article on complementary medicine.
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Complementary Medicine and the Management of Systemic Lupus Erythematosus By Soram Singh Khalsa, MD, Los Angeles, CA
Originally appeared in Lupus News, Vol. 16, No. 3 Fall 1996
In recent years there has been a surge in the interest and use of
"alternative" or "complementary" therapies in the treatment of illness, including lupus erythematosus. What is complementary medicine and how can it be used to help people with lupus?
Defining alternatives
Complementary medicine, functional medicine, alternative medicine, and holistic medicine are all synonyms for the many natural treatment modalities which can be used in addition to traditional pharmaceuticals and surgery. The use of the term "Complementary Medicine" emphasizes the nature of these types of therapies in complementing traditional western medicine. I always explain to my patients that the modalities we will be use are in addition to, not instead of, the current treatment with their rheumatologist. I also like to use the phrase "Functional Medicine" to emphasize the improvement of an individual patient's functioning in their entire life environment. The Institute of Functional Medicine (Gig Harbor, Washington) has created a formal definition: "Functional Medicine is a field of health care focused on the assessment and early intervention into the improvement of physiological, cognitive/emotional and physical functioning." The objective is to assess individual uniqueness and implement programs using diet, lifestyle, and activity tailored to the person's need and effectively promote improved health, resiliency, vitality, and performance. In fact, a recent study in the New England Journal of Medicine reports that approximately one in three people in America has obtained treatment using complementary modalities.
The primary focus of complementary medicine is the concept of a spectrum of health. (See Figure 1.) At one end of the spectrum of health are diseases with pathology, where tissue change and/or organ damage is detectable with blood tests, X-rays, and pathology reports. At the opposite end of the spectrum, we have optimal well being; between extremes is a transition zone.
In the transition zone, organs show no sign of pathology, yet a patient can have many symptoms. It is believed that in the transition zone, organs begin to lose their functional reserve and do not function ideally. The goal of complementary medicine is to understand where patients fall on this spectrum. Although a patient with lupus may have pathology, for example, in his or her kidney, only sub-clinical impairment of other organ functions may be apparent. Complementary medicine strives to identify sub-clinically under-functioning organs and to strengthen them, as well as the organs with pathology.
Symptoms of modern society
Figure 2 shows a list of the symptoms common in modern society, and which often bring patients into the offices of complementary doctors. Although there may be no sign of pathology or underlying disease in patients with these symptoms, they are also very common in patients with lupus. Fatigue, malaise, sleep disturbances, myalgias (including fibromyalgia), cognitive impairment, and gastro-intestinal symptoms are frequent in patients with lupus, and yet may occur in the absence of an obvious disease flare or abnormal blood tests. These symptoms are often responsive to complementary medicine.
Therapeutic modalities of holistic medicine
There are many complementary modalities of therapy; here we will highlight a few. The many modalities of therapy include the use of diet, nutritional supplements, including vitamins, minerals and other nutritional cofactors, and botanicals (herbal medicines). Structural modalities of therapy include chiropractic, osteopathy, and many forms of traditional physical therapy. There are also "energetic modalities" of therapy including acupuncture, homeopathy, isopathy, Bach Flower Remedies, trans-cutaneous nerve stimulation (TNS) and its related modalities. All of these latter
modalities are predicated on the idea that a life-force exists in the body, whose proper flow throughout the body is disturbed in a disease process. These energetic modalities of therapy re-balance and harmonize the flow of life-force to promote greater health in the body.
Let us look at a few of these modalities with specific regard to their relevance in the treatment of a patient with lupus.
Diet and nutrition
The role of diet in the treatment of illness is extremely controversial in the medical profession. Conventional western medicine does not find any direct connection between diet and lupus. In complementary medicine, however, it is believed that modifying an individual patient's diet in specific ways according to his body requirements can reduce the inflammatory reactions of the body. Because all material traversing the intestinal lining
is inspected by the immune system, it is felt that individuals with an abnormal immune system can develop an abnormal inflammatory response onexposure to antigens in the gut. If that response were to cross react with the body's own immunologically similar tissues, an auto-immune disease may manifest. Indeed, studies have shown that patients with ankylosing spondylitis and rheumatoid arthritis do have a leaky "gut" or increased intestinal permeability. Such studies have not been done yet in lupus patients.
In Europe some patients given an "alkalinizing diet" experienced a Reduction of inflammation and pain. In animal models, rheumatoid arthritis is helped by fish oils. On the other hand, alfalfa sprouts can cause lupus flares.
Vitamins, minerals and other nutritional co-factors
Many complementary physicians use "omega-3 fatty acids (e.g., flax seed oil, fish oils) and Omega-6 fatty acids (evening primrose oil, and borage seed oil), and cofactors such as B-vitamins and magnesium to mollify the body's inflammatory reactions.
Acupuncture
Acupuncture is best known in the western world as a modality for the treatment of pain. Regular acupuncture using disposable sterile needles, as well as non-needle, painless electrical stimulation of ear acupuncture points can be effective in reducing pain in patients with lupus, and symptoms such as fatigue, malaise, insomnia and gastro-intestinal problems. Further information on acupuncture is provided in an accompanying article in this issue of Lupus News.
Herbal therapies
Herbs can be used as an adjunct to the treatment of lupus. For example, licorice root and ginseng are believed to support adrenal function and can help improve fatigue, not if you're on a beta blocker. Other herbs such as cheladonium and taraxacum can support liver function, and other herbs for kidney support, intestinal function, etc., are also used by complementary practitioners. Always check with your medical practitioner for chemical interaction with current medications before taking herbal supplements.
Echinacea is one of the most widely used herbs in America, because of its ability to support the immune system in fighting off colds and flu. It is generally felt by complementary practitioners that echinacea should NOT be used long term by lupus patients because of its immune stimulating properties. Long-term use of echinacea may over-activate an already activated immune system in lupus. However, if a lupus patient is fighting a cold or flu, a short-term use (one week) can speed the recovery.
Herbal preparations from other countries have sometimes been found to contain sulfa, steroids or other pharmaceutical drugs. Always check with your medical doctor regarding the safety of any over the counter products.
Homeopathy
Homeopathic therapy, like the other mentioned modalities, is a vast area. Homeopathic medicines can be useful for everything from joint pain and myalgias to digestive system function in the treatment of lupus. Specifically, a homeopathic medicine called Zeel (from BHI Homeopathics) can be very useful as an adjunct in the treatment of joint pains. The pills may be taken orally and the cream may be rubbed on the affected joints.
In conclusion
Clinical results can be obtained using any of the above single modalities of therapy. Many practitioners find that optimal clinical results, however, are obtained by combining and integrating several modalities at the same time, individualizing their use for a specific patient's unique situation. Unfortunately thus far, no prospective double blind crossover studies have been done to prove the effectiveness of these complementary modalities in the treatment of lupus. In daily practice, however, their benefits are clinically apparent to many patients and their physicians.
This introduction has been necessarily brief. Much more can be written about each of these above modalities of therapy and their use in the treatment of patients with lupus. In choosing a complementary practitioner, several things should be kept in mind. First and foremost: what is the practitioner's training and qualifications in the complementary modalities to be used on an individual patient? Secondly, what is the practioner's experience in the treatment of other people with lupus? Thirdly, is the practitioner comfortable working with your primary rheumatologist, and is your rheumatologist comfortable working with a complementary practitioner?
Finally, recognize that complementary medicine, unfortunately, does not have any more "cures" than traditional western medicine. The hope in seeking out complementary care is that it will serve as an adjunct and supplement to give you, the patient, additional symptomatic improvement. However, your disease modifying medications, under the guidance of your primary rheumatologist must be continued for their long-term benefit in your treatment. To get a list of complementary practitioners in your area, you may contact the American Holistic Medical Association at 919-787-5181.
BIOGRAPHY of Soram Singh Khalsa, M.D.
Soram Singh Khalsa, M.D., is a Board Certified Internist on the staff of Cedars-Sinai Hospital in Los Angeles. For the last 18 years he has integrated the complementary modalities of diet and nutritional therapies, acupuncture, homeopathy, and herbal remedies as an adjunct to traditional internal medicine treatment for all medical illnesses. His practice is not limited to lupus.
(c) 1996 Lupus Foundation of America, Inc. All rights reserved. No material in this issue may be copied or published without the express written consent of the Lupus Foundation of America, Inc.
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Q & A:
Physician Perspectives on ComplementaryMedicine
(Originally appeared in Lupus News, Vol. 16, No. 3 Fall 1996)
As a regular feature of Lupus News physicians respond to questions. In this issue we asked four traditional physicians to respond to the question: That are your thoughts on alternative/complementary medicine? We include responses by Daniel Wallace, M.D., Robert Lahita, M.D., Ph.D., Arthur Krieg, M.D., and Peter Schur, M.D.
Q. What are your thoughts on alternative/complementary medicine?
R. If "allopathic," or traditional physicians had all of the answers, United States citizens would not have spent $14 billion on complementary medicine approaches out of their own pockets in 1993.
What do these practitioners know that we do not?
First, they listen carefully to the patient and often take more time with each one. Acting as a father confessor and spiritual guide, they frequently do more good than our tossing them samples of a designer NSAID and yelling "Take one twice a day and call me if you're not better in a week."
Do the nostrums, herbs, spices and vitamins supplied by complementary practitioners work?
Most do not, some definitely do, but few have been subjected to adequate scientific scrutiny by qualified investigators.
Does it make me angry when patients try alternative therapies? No. Do I allow my patients to see me and "them"? Of course, as long as no harm is done or silly advice given. Preparations which contain sulfa, alfalfa, steroids, or indomethacin, etc., should be used very carefully if at all. Many alternative medicine physicians have limited training. A few exceptional complementary medicine physicians are Board Certified in Internal Medicine and know when to refer or call it quits. Dr. Khalsa is an example of how remarkably effective some of these doctors can be. Check their credentials first.
-Daniel J. Wallace, M.D.
Q. What are your thoughts on alternative/complementary medicine?
R. I have always had an open mind. As a scientist one is prepared to accept anything and everything. Recall the 1930s when various remedies included rubbing moldy fruit on wounds to cure infections: we didn't know then what we know now, simply that there was an ingredient in the moldy fruit called penicillin which helped heal the wound. The same can be said of raw sewage which held cephalosporin antibiotics and offered an entire new line of drugs some 20 years ago. We can picture the wounded soldier of the twelfth century wrapping his wound in mud! Sewage still yields jewels and we cannot dismiss today that which seemed preposterous years ago. Preposterous today may be the panacea of tomorrow, perhaps even for lupus. Robert Koch and Louis Pasteur were mocked and ostracized because of their new ideas. Is this alternative medicine, or is it better called "potential therapy?"
Alternative medicine comes with "baggage." There should be no "alternative medicine," only real medicine in the process of study and investigation. The latter takes forever and most of us don't have forever. However, the problem with unusual forms of alternative medicine is its insistence on being "alternative" rather than evolving as tomorrow's blockbuster: cheap, effective, no side effects. I regret that this is not the case with acupuncture or copper bracelets, lemon rinds, or various mineral salts. I will keep my mind open, but we all have limits.
In my travels I have seen much in the line of alternative medicine, nowhere more apparent than China, where some remedies useful for 3,000 years are still regarded as "non-traditional"... but not as "alternative." Usually patients opt for the traditional until they suffer some incurable or terminal ill where
traditional medicine is of little value. In some cases the herbs, roots, and other remedies passed down through the centuries are just like the moldy fruits of yesteryear. There is something to this stuff: bring it to science and make it orthodox. In the meantime, we should have the freedom to treat disease by other means if the patient believes the remedy works and-most importantly-they do no harm.
-Robert G. Lahita, M.D., Ph.D.
Q. What are your thoughts on alternative/complementary medicine?
R. Like most rheumatologists, I have mixed feelings about the use of complementary therapies by my lupus patients. There are a few published studies of complementary treatments using the approved Western model of a randomized, prospective double-blind study that appear to show benefit in some conditions. No studies have been published on the use of these treatments in lupus, but I know many people try them, and that some - a minority, I think - describe remarkable benefits. Only the most egoistic physician would claim that medicine and doctors have all the answers to patients' problems. There are many things that modern medicine does not yet understand, and many diseases yet to be recognized. If unconventional treatments help patients feel and function better, then I think that we as physicians should welcome this.
What are the hazards of complementary approaches?
Some of the treatments can be harmful: serious illness and even fatal reactions to herbal therapies have been reported in the US and abroad, though are fortunately rare. A more important potential problem in these treatments is that patients and their health care providers may ignore potentially serious symptoms requiring conventional medical therapy. As an example, I'll use the true story of a 26-year-old lupus patient I saw last year, who I'll call Sarah.
When I met her, Sarah was in our intensive care unit suffering repeated seizures, psychosis, low blood counts, fever, arthritis, and early kidney failure. I learned that her lupus had been mild for several years on plaquenil and a low dose of prednisone. The previous year she had started seeing a provider of alternative medical treatments for her persistent fatigue, and began an herbal regimen. Initially she felt much better, stopped going to her rheumatologist, and discontinued the prednisone and plaquenil. A few months later the fatigue worsened, and she became more and more achy, despite increasing doses of herbs and regular spinal manipulations to "improve the body's energy flow." This progressed until she was hospitalized with seizures, and her lupus flare treated with conventional medications. Sarah had a great response to therapy, and is now doing well, though fatigue persists.
Some patients find benefits in complementary therapies, especially for the nonspecific symptoms such as fatigue and aches that often don't respond well to Western medicine. In my practice I neither advise nor discourage patients from trying such therapies. However, I warn them of the risks of discontinuing their medications on their own, and of the symptoms that should prompt them to see me before their next scheduled appointment.
-Arthur M. Krieg, M.D.
Q. What are your thoughts on alternative/complementary medicine?
R. People with lupus seek help hoping to find a cure not only for the disease itself, but also for the stress and fears associated with it. There is now no cure, which is very disappointing and frustrating. Therefore, many people turn to their health providers for healing, i.e., improving their quality of life, significantly reducing symptoms, preventing disease progression and relapses, and alleviating stress and fears. healing is provided by physicians, chiropractors, osteopaths, homeopaths, acupuncturists, herbalists, counselors, support groups, and others. The choices are many, and therefore difficult.
Which are best for which symptoms, at different times? Each person must evaluate the benefits vs. risks of each treatment. Become an educated consumer. Obtain published information regarding potential types of treatment from providers and/or the LFA, Consumer Reports, Center for Disease Control, National Institute of Health, Medline, Federal Drug Administration, Medicare, etc. Some forms of therapy may enhance (complement) one other and promote healing; others may not. It is vital to your well being that you inform each of your health providers of the others so optimal coordination results. Keep in mind that belief in your choices will probably increase their success. For example, prayer and meditation often help relieve the stress associated with disease. Remember: healing involves educated choices and information sharing.
-Peter H. Schur, M.D.
(c) 1996 Lupus Foundation of America, Inc. All rights reserved. No material in this issue may be copied or published without the express written consent of the Lupus Foundation of America, Inc.
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Lupus Foundation of America
1300 Piccard Drive, Suite 200
Rockville, MD 20850
U.S.A.
301-670-9292
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Membre I.I.M.
Sandy Bussières, Amqui