Dear Silicone Survivors and Friends:

Stephanie Morgan, of SISTERS, in Illinois, reports that, due to ill health, she has discontinued her newsletter. We wish her the best in her efforts to heal.

The videotape on healing from silicone will include information from the conference in Denver as well as the conference in Hot Springs, AR that will be held on Nov. 18, 1995. This will delay the tape's release by about a month, but will greatly increase the quality and content (See speakers for Hot Springs conference below).

I suppose that many of you saw the hack job that 60 minutes did on our issue. See my letter to them, attached at the back of the newsletter. Please write them at the address at the top and inform them that they simply did not get the story right. Remind them of the Eosinophilia Myalgia story (L-tryptophan), the Agent Orange Story (the military still denies its existence), the asbestos problem, and other corporate cover-ups. Even the folks that made Dalkon Shields stated that there were no problems with them. This is old news, but 60 Minutes bought it lock, stock, and corporate big-wig.

Another story to check out is the one in this current issue of Consumer Reports. They did their own hack job on vitamins and food supplements. If there ain't scientific proof, we don't believe it. Actually, there is scientific evidence of health benefits for many products, but since the AMA doesn't believe it, apparently neither does Consumer Reports. It's the first time in 25 years that I have subscribed that I couldn't believe my eyes. Write to them and enclose scientific articles from holistic journals. Tell them that you think they bought the AMA line and failed to really check out the sources of information. Tell them how much herbal remedies, food supplements, and (natural) vitamins have helped you. I know that I wouldn't be alive if I had not gone on a program of intense vitamin and food supplement therapy. Often women ask, how can I help. Write Consumer Reports and 60 Minutes and tell them what you think!

Because of the mailing costs, we are over a thousand dollars in the hole for our latest conference. If you can make a donation to help us with our expenses, please do. We do these things for the women and we need your support to continue to help. Any donation will help. Remember, we are tax-exempt and your donation is deductible. Please help us help other women, as we are receiving calls from about 5 new women a day and packets must be sent to all of them at an average cost of $5.00 each.

UPCOMING EVENTS: Shirley (Gypsie) Goodner will present a conference on breast implants in Hot Springs, AR on November 18th, from 8:30 to 4:00 P.M. Speakers include Dr. William Rea, Environmental Health Center of Dallas; Dr. Britta Ostermeyer-Shoaib, Neurologist from Houston; Dr. Robert Ira Lewy, Internal Medicine, from Houston, speaking on Immunological and Rheumatological Disorders; Dr. Aristo Vojdani, Immunosciences Lab, Beverly Hills, speaking on laboratory analyses; Dr. Jae Chun, Plastic Surgeon, Corona Del Mar, CA; Dr. James McNair, Opthalmologist, Arkansas; and Lynda Roth, C.O.S.S. The conference will be at the Park Hilton Hotel in Hot Springs, Arkansas. Room rates are $55.00 per night, single or double, with rooms reserved for Friday, Nov. 17th and Saturday, Nov. 18th. Reservations must be in by Nov. 3rd to qualify for this rate. The hotel phone # is (800) 844-PARK or (501) 623-6600. Mention BIVA (Breast Implant Victims of Arkansas). Cost is $50.00 and lunch is included. Contact Gypsie at (501) 394-3995 for more information. There are airline flights to Little Rock which is 45 minutes away. Fall foliage will still be wonderful and Hot Springs is a resort area, so bring your significant other and take a break in beautiful country.

Dr. Andrew Campbell just returned from the NIH conference in Washington, DC. He will speak at a number of locations in November and December to share what he has learned. He will be in Columbia, SC to speak for the group there on November 11th. He will be speaking in Albuquerque, NM on November 18th, at Seton Hall, St. Joseph's Medical Center, 601 Dr. Martin Luther King, Jr. Blvd., from 9-12 A.M. Contact Ann at (505) 865-5866 for more information on the NM meeting. There is no charge for admission. Dr. Campbell will be in both San Diego and in Costa Mesa to speak on December 10th. Sometime during December he will also speak at Beaumont, TX about the silastic band used in gastric segmentation. He will be a busy man!!

LEGAL INFORMATION: Those of you with McGhan (after 8/4/84) and Cox-Uphoff (CUI) implants (except as described below) may need to file with the Dow Corning Bankruptcy since Dow Corning made the silicone for your implants. We hear that Inamed, who owns CUI now, may come up with a settlement for Cox-Uphoff. If it happens, it will be more restrictive than the class action and they will require much more documentation of illness. Don't get your hopes up, though, because it may not happen.

Implants for which Baxter Healthcare Corporation is legally responsible are implants prior to 3/30/1984 include Heyer-Schulte, American Heyer-Schulte, Baxter Travenol Labs, Natural Y (pre 1979), Heyer-Schulte (H-S) and Mentor prior to 3/30/84. American Hospital Supply Corporation retained responsibility for breast implants manufactured under the H-S label prior to 3/30/84. American Hospital Supply Corporation was thereafter acquired by Baxter Travenol Laboratories, Inc. They became known as Baxter Healthcare Corporation. Bristol Meyers Squibb is responsible for implants made by the Cooper Companies (Natural Y--after 1978), Medical Engineering Corporation, MEC, Surgitek, Cox-Uphoff (CUI) polyurethane (but not other Cox-Uphoff implants). Implants may be called 1500 series, 15100 series, Vogue, Optimam, Meme (ME or MP), Replicon, and Natural Y (after 1978). 3M (Minnesota Mining & Manufacturing) is responsible for 3M and McGhan implants manufactured prior to 8/4/84. These implants generally only have a style number, such as Style 80. Thanks to Toni Butts and Dr. Pierre Blais for some of this information.

MEDICAL INFORMATION: In a study that I heard about on TV, 22 of 23 persons with chronic fatigue showed a flaw in blood pressure regulation. Water is one of the major regulators of blood pressure, so drinking at least eight glasses of filtered water a day can help with this problem. A lack of the proper amount of water in the body can cause digestive problems.

CHELATION THERAPY: What is it and what does it do? What doesn't it do? Chelation therapy is a method of ridding the body of toxic metals. Some physicians use this type of therapy to help reverse the effects of atherosclerosis or hardening of the arteries. This is accomplished by removing the calcium content of the plaque build-up in the artery walls through the injection of a chelating agent. This agent binds with the heavy metal, makes it inert, and removes it from the body. The chelating agent, with the metal, is flushed out with the urine within 24 hours of treatment. This helps restore good circulation to bodily tissues. For toxic metals, a chelating agent called EDTA (ethylenediaminetetraacetic acid), a synthetic amino acid, is injected and helps to reduce internal inflammation caused by free radicals. Chelation can ease the discomfort and disability from degenerative diseases (arthritis, scleroderma, lupus, etc). Some success has been reported in patients with multiple sclerosis and in patients with diabetes. In some patients, sexual function has improved.

500,000 U.S. people have used chelation therapy in the past 40 years. Treatments other than lead and heavy metal toxicity (copper, iron, mercury and cadmium) have not yet been approved by the FDA. That does not prevent physicians from using this therapy for cardiovascular diseases and other related health problems. These toxic metals interfere with enzyme activity which then increases the production of free radicals. There are FDA approved studies underway to determine the saftey of EDTA which is said to be less toxic than aspirin.

Chelation therapy is an out-patient treatment and generally takes about three to four hours. Often 20-30 treatments are needed and these can be from one to three per week. EDTA is given intravenously with vitamins and minerals. Blood pressure is observed before, during and after. Other tests that may be taken are cholesterol, blood sugar, kidney function, and minerals in the tissues. Chelation is often part of a complete lifestyle change, including low fat, whole foods, clean, filtered water, and regular exercise. Vitamin and nutritional supplements, including vitamin C, heparin, selenium, chromium, copper, zinc, and manganese will probably be included in the overall treatment. Smokers should quit. Very little alcohol should be consumed. Costs may vary with length, location, and intensity of treatment.

Oral chelation also exists. Penicillamine, which is used to treat rheumatoid arthritis (RA), can be used to treat heavy metal poisoning. It works quite similarly to EDTA. The reason it works for RA is probably that is removes and controls the excess of free radicals. EDTA can also be taken orally. It is slower, but can be taken for longer periods of time and doesn't require being hooked up intravenously for 3-4 hours. It is much cheaper this way, also. Many natural foods are chelators, including garlic, vitamin C, carrageenan, zinc, and some amino acids such as cysteine and methionine. Oral chelation may reduce serum cholesterol. While not as effective as IV chelation, it does have benefits.

So far, patients with lead poisoning, atherosclerosis, angina, strokes, peripheral vascular disease, and gangrene have been shown to improve with chelation therapy. Along with the overall betterment, patients reported improvement in memory, sight, hearing, sense of smell and an increase in energy. Allergies and chemical sensitivities may improve due to a better functioning of the immune system. It may slow the progression of Alzheimer's disease and may improve the progress of macular degeneration. It may also slow the aging process when used intravenously. EDTA should not be used during pregnancy or in patients with severe kidney failure.

Chelation therapy is not a cure-all. It has been shown to help the conditions stated above. It probably will not remove silicone from our systems. However, many doctors believe that a great part of our toxicity is from the heavy metals that were in the silicone, so it may actually help us. Especially if women have been found to have toxic porphyria, it may help to detox them.

To find a doctor who does chelation therapy, contact the American Board of Chelation Therapy (212) 266-7246, 70 W. Huron Street, Chicago, IL 60610 or the American College of Advancement in Medicine (714) 583-7666, P.O. Box 3427, Laguna Hills, CA 92654. You may find many doctors who do not know about or who believe that chelation therapy is like " snake oil" treatments. The AMA, who still supports the safety of breast implants, does not approve of chelation therapy. After all, if patients with clogged arteries don't uses chelation, their members may do more angioplasties.

Some of this information is from Alternative Medicine: The Definitive Guide.

LABS: KARJOO-VOJDANI PROJECT: Drs. Karjoo and Vojdani have been concerned for some time for the children affected by silicone. Now they have started a project where the children can be tested free of charge. This project would involve more than just testing the children, the date received will further the understanding of just how extensive the damage to children has been and the dangers of implants to children born after implantation.

The test will compare four sets of blood. 1) A mother with implants. 2) A mother without implants. 3) A child born to the mother with implants. 4) A child born to the mother without implants.

Drs. Karjoo and Vojdani will share the cost of the blood testing for the children and controls as well as the data base. Dr. Karjoo will perform histopathological examination at no charge for those women who are part of the project and have access to their tissue in formaldehyde or who have access to their slides. These women may be required to fill out forms for an informational study.

Only with this kind of test design will they be able to have statistically significant data. Of these four sets of blood tests, only the mother with silicone will be asked to pay for the lab tests, which will be the Silicone Implant Panel Comprehensive. The cost is $550.00, and believe me, for this price you receive well over a thousand dollars worth of test results.

All blood must be labeled Karjoo-Vojdani Project. For more information about this project, call: Immunosciences Labs (800) 950-4686 or Fax them at (310) 657-1053.

Please, consider participating in this study if you have children born after implantation. We desperately need this research. Often women feel that they have nothing they can give or nothing they can do to repay all the help they have received. This is something you can do!!

ALTERNATIVE MEDICINE: Dr. Dennis Wyman and Kevin Tolman, from SLC, UT, attended our Denver Conference on Healing From Silicone in October. They were here to demonstrate and tell us about Magnetic Health Care Products. Many women have reported benefits from using these products. Nikken, Inc., the manufacturer of these products, has been in business for over twenty years, but has only been in North America for five years. These products are found in at least twelve countries.

Some symptoms that women have reported benefits from magnetics are lack of sleep and low energy levels. Back and neck discomfort may also be helped, as may other muscular discomfort. Headaches may also be relieved by these products. A complete brochure and price list is available by contacting Wellness Concepts, 5036 S. 3025 W., Roy, Ut 84067 or call (801) 773-0834. These products may be purchased by check or credit card and will be delivered to your door. Kevin Tolman's wife, Lorene, who is a silicone survivor, used these products and benefitted from them. Mention C.O.S.S. when you contact them.

Magnetics have been called the most exciting discovery in the health field since penecillin. There are magnetic mattresses, pillows, shoe inserts, etc. Many women report dramatic results in reducing fibromyalgia symptoms and in lessening chronic fatigue. Women with multiple sclerosis report dramatic improvement. Magnetics can reduce stress. Magnets stimulate the body to heal itself, they do not heal the body (see insert about magnetics at end of newsletter).

Health Regeneration Institute, at The Circle of Life Village, 130 Biodome Drive. Waynesville, NC 28786 (phone 704-926-2200, fax 704-926-9041, does a wholistic detox program. They have treated a number of silicone patients, and the women have improved. I'm sure it is not cheap, and I am equally sure that most, if not all of it, will not be covered by insurance. Call or write to them and ask them for more information. I have spoken with two women who have gone there and they report tremendous improvement in their health.

Asparagus has been show to have blood-oxidizing (increasing the oxygen) effects.

QUESTIONS & ANSWERS: Q. I saw the segment of 60 Minutes and feel that it is a lost cause. I feel like giving up. Can we ever win this battle? A. This was just a battle, not the entire war. It is difficult to watch this mockery of our situation, but we have to look at the bigger picture. Think about all the women who have had their implants out because of the publicity. Think about all the young women who have not had implants because of the publicity. Think about all the unborn children who will not be damaged because women have become educated. Think about all the sick women who are recovering because we chose to speak out. Think about the good that has been done, and try to focus on that instead of one biased reporter who apparently chose to buy the corporate explanation without really checking out the facts. There's more to life than one TV story or a few negative magazine articles.

INFORMATION AVAILABLE: I have some of the " International Journal of Occupation Medicine and Toxicology that you may purchase for $35.00 plus postage ($3.00). This is an entire journal on silicone disease. You will find a tremendous amount of information in it. I just received these journals. I had a few that I paid a much higher price for, but I did not pay as much for these, so I can sell them at this greatly reduced price. Please order them as soon as possible, as I expect they will not last for long.

PERSONAL COMMUNICATION: Diane would like to hear from tram-flap patients who had the surgery to replace silicone implants. She is extremly concerned about the impact on stomach muscles since she is athletic (mountain bike racing, cross country skiing, running). Both positive and negative responses would be appreciated and useful in the decision-making process. Diane Fjelstad, P.O. Box 604, Chetek, WI 54728-0604, phone (715) 924-3691 evenings.

IMPORTANT: When you hear about personal attacks on support group leaders, put yourself in their place. You cannot be a leader and not have someone criticize you. It just means that you are doing your job. Consider the motive of the attacker. Green-eyed jealousy has reared its head more than once. If one leader becomes more popular than another, it is sometimes difficult for the ones that are not the top-dog at the time. Please consider the source of any negative information and contact the person being attacked for the rest of the story.

BOOKS: The Healing Powers of Chelation Therapy, by John Trowbridge and Morten Walker, New Way of Life, 1992. The Chelation Way, by Morten Walker, Avery Publishing, 1990.

PRODUCTS AVAILABLE: June Reeder, our contact and group leader in Spokane, wants you to know about a great product called L'APRINA. It is a topical product containing aspirin and aloe, comes in a pump spray, and puts the aspirin at the point of pain, not in your stomach where it can cause damage. To find out more about this product, contact June at (509) 226- 3144 or write to her at 5620 N. Chase Rd., Newman Lake, WA 99025.

DISCLAIMER: The opinions expressed here are those of the editor and any contributors and are not to be construed as medical or legal advice. Any articles or information submitted may be edited because of space, content or grammatical errors.

COPYRIGHT: Our purpose is to disseminate information and provide support. This material is copyrighted so that we may retain control over content. You may reproduce this document as long as it is not done for profit and as long as no material, including copyright and subscription information, is changed.

DONATIONS: The Coalition of Silicone Survivors is a not-for-profit, tax-exempt corporation with over 4000 members world wide. Our editor, Lynda Roth, is a survivor having heard the dread word 'cancer' followed by the reassuring 'will look like a normal breast'. In addition to having helped start many support groups, Lynda has appeared before the FDA, congress members, national TV in the US and other countries and lectures internationally. Your donation will definitely help others receive information about the dangers of implants. IF READING THIS NEWSLETTER HAS HELPED YOU, AND YOU THINK OTHERS SHOULD HAVE A CHANCE TO RECEIVE OUR MESSAGE, WE URGE YOU TO GIVE GENEROUSLY. Donations are tax deductible in the United States.

As a member you will receive a highly informative information packet and this newsletter, including the CURRENT ISSUE for the next 12 months. Remember in the US it's tax deductible. Your help is critical.

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