COALITION OF SILICONE SURVIVORS

May, 1997

Dear Silicone Survivors and Friends:

I have been working doubly-hard this last month and am exhausted. I sometimes wonder where I find the energy to continue. It just seems to come back when I hear from another silicone victim!! Also, visiting my grandchildren seems to revive me!! I just returned from California where I met my latest grandson & visited my granddaughter. I also met with many silicone survivors and discussed conferences and the future of silicone issues. A special thanks to all the women who helped with the conference arrangements.

UPCOMING EVENTS: A Vancouver, BC conference will be held from June 6-8th. See last month's newsletter for details. I plan to attend this conference.

An Atlanta Conference is scheduled for June 21st (my birthday) at Embassy Suite Airport Hotel. Cost: $45 person, $80 couple, $125 professional, $10 extra at door. Visa/MC accepted for pre-registration. Speakers: Dr. Henry Jenny, Dr. Britta Ostermeyer, Dr. Andrew Campbell, Dr. Douglas Shanklin and Dr. David Smalley plus Jama Russano, Sybil Goldrich, Sandy McDougal, Kathy K-Johnston & a panel of BILG attorneys. Send regis. to TDN @ 1906 Grant Lane, Columbia MO 65203 or fax registration request to (217) 352 -8229 or call (217) 352-8220 for more information. The not-yet-released film, Two Small Voices, will be shown on Friday evening. This film is about Sybil Goldrich and Kathleen Anneken and their fight to educate women about silicone disease. This film, Two Small Voices, will be shown on the Lifetime Channel beginning June 16th. Watch for it.

A San Fran. area conference is scheduled for July 19th. We are working out details now.

A Newport Beach (between San Diego-Los Angeles) Conference is scheduled for 16th of August. More later.

A Chicago Conference is still in the planning stages. We are trying to get more info.

A Portland, OR conference is in the planning stages for September.

We are working on October 4th for a Philadelphia conference.

We need women in all the above areas to ask their attorneys & doctors to help us to notify women of these conferences. These are for silicone survivors as well as families, friends, doctors & attorneys. Education is the key to ending this nightmare forever because it is continuing with silicone-shell-saline implants, soy bean oil (translucent) implants (in a silicone shell) and other silicone implantable devices. We create new problems every day someone receives a silicone implantable device. Be involved! Help us to help others to learn about the dangers of silicones.

One thing I always fail to understand is that some attorneys do not and will not notify their clients of these conferences that are held in their areas. We are helping those attorneys educate the clients and their families. Without us, their work would be much harder. Let's all work together to get this job done!!

The latest device made of silicone that I have heard about is a silicone button (like silicone putty) used for correcting a deviated septum (nose). The person who has this now has silicone disease. There are also hard silicone splints in many noses around this country. How many people out there have this problem and have not had it diagnosed?? The list grows and grows!!

A movie scheduled to come out this Fall is entitled Breast Men and stars David Schwimmer and Chris Cooper. A dark comedy about this topic, it will be on HBO.

LEGAL INFORMATION: The class action lawsuit in Louisiana is moving along. It will probably be a few months before the jury gets the case. Dr. Pierre Blais had to stay there for over a week to finish his testimony. Attempts by defendant Dow Chemical to delay the case because they claimed that they did not have adequate notice were denied by the judge, who ruled that notice was adequate. Dr. Eric Gershwin has testified and others are now on the stand.

Penile Implant Plaintiffs have scored an important victory. A Minnesota state judge denied the defendant's (American Medical Systems) motion to dismiss the claims of around 300 men (consolidated cases, not a class action) who alleged that their penile implants were defective. The grounds for the requested dismissal were that the plaintiffs were bringing the suit in states other than where they received the implants. MN is the home state of AMS.

The first five Norplant cases (brought in Texas) against Wyeth-Ayerst Laboratories were dismissed. The judge ruled that the plaintiffs failed to prove that a different warning from the manufacturer would have altered the doctor's decision to prescribe this contraceptive. Under TX law the company was only obligated to warn the doctor, not the patients, of any potential dangers of their product. More than 4000 women have filed suits against Wyeth-Ayerst because of Norplant devices. In Ohio in 1996, the Ohio Court of Appeals affirmed a $30,000 medical malpractice award for failure to provide complete cautionary instructions for Norplant usage. The victim was not awarded punitive damages.

Baxter won another Texas case. They are the hardest defendant to beat in court. I hope they get their due soon!! We won one against 3-M.

A new brief was filed in the Mahlum (Nevada) case against Dow Chemical (currently in front of the NV Supreme Ct.) Plaintiff's attorneys filed a brief contending that the appeal should be dismissed because they have new evidence disputing the company's statements that it neither tested silicone materials used in medical implants nor conducted testing on breast implants for its partner. Oral arguments for the appeal were scheduled for April 16th, the hearing was held, and there has been no decision to date.

British Columbia, Canada--Women outside of BC are permitted to join the BC class action lawsuit against breast implant manufacturers.

More than 1,000 New Zealand women with silicone breast implants have met the Feb, 16th deadline for joining the U.S. class action lawsuit.

There was a settlement (out of court) that resulted in Quebec-Ontario women receiving a some funds (Bristol). 5,700 women will eventually split the settlement of $28 million. It's not much (about $3700 each) but it is better than Mentor.

Judge Jones will remain on the case in Oregon despite his potential bias (his wife has silicone breast implants and is a member of the Lindsey class action). I hope they appeal this decision again!! How blatant does bias have to be??

There are hearings on a move (obviously a delaying tactic by Dow Corning) to move all the cases under Judge Pointer to Judge Hood (Michigan). This is probably not in the best interests of women who opted out.

276,000 Notifications of Status have been sent to domestic implant recipients who registered with the Claims Office. Over 80,000 of these Notifications were sent to people who submitted Proof of Manufacturer forms indicating potential eligibility under the Revised Settlement & approximately 38,000 were classified as current claimants. Approximately 29,000 registrants have opted out (either the first time or before receiving their status letters). Advance payments of $5000 or $1000 have been sent to 48,500 recipients of Bristol, Baxter, or 3-M/McGhan. An additional $3000 explantation was sent to 9400 persons. Checks ranging from $5000 to $95,000 have been sent to approximately 7000 current claimants. Status letters have been sent to the remainder of domestic registrants who did not file a proof of manufacturer form. Notifications of Status are continuing to be sent on a weekly basis to remaining class members.

Mentor/Bioplasty people have all received their settlements (such as they were, I received $1519.00 of which my attorney received 10%). These claims were all processed within 60 days.

Not all cases that were being held in the class action have been remanded to the courts in their states. It is hard to find out just what is holding up these remands.

Judge Pointer has appointed John M. Kobayashi, Denver, as special counsel to the National Science Panel which is evaluating literature & studies on breast implants.

We continue to hear from women who have had their attorneys take more than the percentage (of the women's settlement funds) than was allowed by the MDL. File a complaint with the MDL. See last month's newsletter for information.

I am receiving a number of calls from people who recently got a notification from Dow Corning saying why they were rejecting the person's claim. These went out to foreign claimants also. Ignore them. Dow Corning is posturing and trying to get the judge to let them off the hook. In my opinion, it is not going to happen. It is one of their sleaze tactics to try to convince all of us that silicone is not the problem. None of us should be surprised at these tactics. I received one of these on the 11th of April. I will file it under another sleazy attempt on Dow Corning's part to deny their responsibility toward the millions of people they have injured. Watch for information on the court hearing that will determine the outcome of the reorganization of Dow Corning's bankruptcy. We should know something soon.

There is still a move afoot in Congress to limit liability of companies when they provide materials for medical devices. We need to keep our ears open and fight this type of biased bill. Any bill of this nature should limit the liability to life-saving devices and not to all bio-materials.

MEDICAL INFORMATION: Myofascial pain syndrome (MPS): What is it and why does it sound like Fibromyalgia (FMS)? See FMS information in a former newsletter. MPS is a little different, but is often missed, as is FMS. Both are soft tissue conditions and are diagnosed by history & physical examination (a third soft tissue condition is articular dysfunction). Both are often mis-diagnosed by insurance companies (especially when they result from accident and/or trauma and result in an IME (Independent Medical Exam) by which most insurance companies decide whether or not to pay claims.

MPS is often caused by major trauma, such as auto accidents or by repetitive use of muscles (microtrauma). FMS is often brought about by physical trauma also (42% of cases). MPS has 5 major features: 1) The history of the initial onset of pain and its recurrences is strongly related to muscles. It usually relates to the length (prolonged shortening aggravates pain) and use (overload or sustained contraction) of the specific muscles involved. 2) Reproducible, exquisite spot tenderness occurs in the muscle at the trigger point. 3) Pain is referred locally or at a distance on mechanical stimulation of the trigger point. This referred pain and tenderness projects in a pattern characteristic of that muscle and reproduces part of the patient's complaint. Patterns of referred pain are frequently different than those expected on the basis of nerve root innervation (damaged nerves). 4) There is palpable hardening (you can feel it) of a taut band of muscle fibers passing through the tender spot in a shortened muscle. 5) A local twitch response of the taut band of muscle occurs when the trigger point is stimulated by snapping palpation or needle penetration. Recently MPS patients were shown to have abnormal needle EMG activity. Surface EMG testing often is abnormal in MPS patients. Patients with post-traumatic MPS often develop a Stage 4 sleep disorder that then progresses to the clinical picture of fibromyalgia. The treatment protocol is much like that for fibromyalgia.

Often, MPS is in the jaw and facial area and is called Myofascial pain dysfunction (MPD). This can result from jaw injury or from clenching and grinding of the teeth. The muscle fatigue induces inflammation and spasms. These impinge on nerves. Sometimes there is dull, aching sensations in the jaw area. Treatment is with stress reduction and a bite plate to deter clenching and grinding. Anti-inflammatory drugs may be prescribed as well for a short term. Physical therapy may be helpful to alleviate symptoms. This information is from the Merck Manual & Health Points Spring Issue.

The Baylor Study has not been released yet, in spite of reports to the contrary.

A longitudinal study (being done by Western Electric) that has been going on for 30 years has found that people who eat fish at least twice a week have a dramatic decrease in heart disease. From another study just released, (NEJM?) people who eat as little as 1-2 cloves of garlic a day have a dramatic decrease in blood pressure problems and heart disease.

NY State has ordered insurance companies to end forced limits on the amount of time mastectomy patients can stay in hospitals. This is a start in the right direction. Medicare has already issued the same orders.

Hospitals have been targeted by the Environmental Working Group as a major cause of air pollution. Hospital waste incinerators spew dioxins, mercury, cadmium and other carcinogens into the air. 69% of hospital incinerators have no pollution control devices.

SMOG particles damage DNA and can lead to cancer. Microscopic particles in smog can damage the genetic structure of cells. and alter them. From Environmental Science & Technology, 2/97.

Genital powders and sprays have been linked to ovarian cancer. There is a 50% higher risk of ovarian cancer among women who use these products. Sprays are the worst. Amer. Journal of Epidemiology, 3/1/97.

Some childhood leukemia's in the US may be a direct result of the 1986 Chernobyl disaster, according to NY radiation experts. There is a 30% increase in US leukemia and there is evidence that nuclear fall-out was detected in the US milk supply until mid-1988.

Women who smoke and have unprotected sexual relationships have a greater incidence of genital or venereal warts. Smoking also increases the risk of aortic aneurysms, according to a British study.

Phenolphthalein, a common stimulant found in Ex-Lax and other laxatives, may be carcinogenic. In May of 1996, FDA reclassified this ingredient from safe and effective to more data needed. Several other laxative ingredients have also been reclassified, including senna and bisacodyl.

U.S. women now have a 1-dose medication (Monurol) for bladder infections. The active ingredient is the antibiotic fosfomycin tromethamine which is effective against E-coli and enterococcus faecalis. Although the symptoms do not always abate immediately, it is still effective in many cases. The same side effects that occur with other antibiotics may occur with this treatment.

Post-menopausal women who are overweight have lowered chances of breast cancer survival. Weight was as significant a factor as size of tumor & lymph node involvement. Estrogen is generated by fat cells after menopause, so overweight women may have elevated estrogen levels. Estrogen levels are sometimes related to breast cancer survival.

Protect your children, especially those with fair skin, from sunburn. Childhood sunburns are the leading cause of melanoma (potentially fatal form of cancer) in later life. Skin cancer can be prevented.

Platinum in breast implants! Why should we worry about this?? In lawsuits that have come to court, the defendants have presented no evidence that any testing was done on platinum to determine its safety for implantation inside the body. Platinum (platanic salts) is a chemotherapy agent and was used in creating the gel, shell and dispersion of implants by different manufacturers at different times. The platinum metal can cause allergic dermatitis and respiratory distress in susceptible individuals who generally have long exposure rates. Platinum salts are powerful antigens and can produce neuromuscular toxicity and nephrotoxicity (kidney). The EPA, in 1978, found that platinum was more biologically and toxicologically active than they had previously believed. They found that metallic platinum and insoluble platinum accumulated in many animal organs causing various abnormalities and that platinum may be soluble in human tissue, primarily lipid and that it affects the system much like mercury poisoning. In 1978 the manufacturers were utilizing platinum in both the gel and shell of implants. In the elastomer shell of implants around that date, both H-S and McGhan used this product to decrease capsular contracture. In December of 1980 Dow Corning found that their gel contained 1ppm while the H-S and McGhan contained from 5-10ppm. Bronze coloration demonstrated this additive to the naked eye. General Electric also was using platinum in their gel. Surgitek denies ever doing any testing to check for platinum. In December of 1981, Dow decided to use platinum as a dispersion agent to slow down gel bleed. They coated the inside of the implants with an agent known as Platinum II (Silastic II). This product contained 10ppm of platinum. Although Dow Corning conducted a limited safety test (130 persons) and found the product non-allergenic, one worker who showed signs of platinosis was removed from the job. To date, there is no evidence of any longitudinal or long-term studies on human subjects exposed to platinic salts done by B.I. manufacturers. This appears to be true for other chemical contents of implants also.

ALTERNATIVE MEDICINE: Antioxidants fight cancer because cancer causes an abundance of oxidants (free radicals) which promote the further growth of disease. Antioxidants fight these cancer-causing agents. From the March 14th issue of Science Magazine.

Stress in cancer patients weakens immune function. Persons with higher stress levels show lowered immunity.

ACID-ALKALINE BALANCE-: Saliva level should be at pH level of at least 7.2, but most silicone survivors have a pH saliva level of less than 5.5. Mine was just under that level 6 months ago, but now it is 6.5.

A low pH level can be a contributing factor of fibromyalgia. Blood pH should be between 7.35 and 7.4. Blood pH cannot drop without endangering your life. Pools and Hot Tubs should be maintained at this level also as this discourages the growth the fungus and bacteria. The vagina should be kept at a pH of 4 to 4.5 to discourage fungal infections Avoidance of sugars helps keep the vagina at the proper acid-alkaline balance. Urine pH should be between 6.0 and 6.2 to help prevent the growth of bacteria and fungus. Cranberry capsules (juice has way too much sugars) can help maintain acidity of the bladder. Under 5.5 bladder pH can indicate the presence of heavy metals.

Stomach juices are normally at a pH level of 1.8 to 2.0 because the corrosive effect is needed for digestion. Things such as an allergy to nickel may cause the stomach pH to rise. Being in stress can also cause the stomach pH to rise as our body takes care of the stress-related problems and ignores making acid for the stomach. Chewing gum can use the hydrochloric acid needed for the stomach and cause the pH to rise. Betaine hydrochloride is sometimes given to increase the acidity of the stomach. Digestive enzymes are necessary for many people to keep the acidity of the stomach normal and aid digestion. Be sure this is the problem, however, before taking Betaine, as it can cause problems if the acid level is normal. Ironically, taking antacids may be just the opposite of what we need as we age, as they make the digestive system more alkaline. The digestive tract is alkaline and the pH varies in different parts of the digestive tract. Symptoms that may indicate digestive problems include heartburn, gas, ulcers, allergies, bloat, constipation, diarrhea, weight gain or loss, pernicious anemia, and lactose intolerance. Taking omega 6 oils can help to protect the stomach lining. Acidophilus is recommended to aid digestion and get the proper balance in the digestive system for many, especially if any antibiotics have been taken. Avoid eating starches and protein at the same meal.

I take coral calcium to help my body with the acid-alkaline balance. Eating a lot of vegetables will help. Fruits in moderation are good. Meats and many starches are acid, so if one's saliva pH is too low, more vegetables (salads, etc.) are recommended.

To detoxify the body from being too acid (which most of ours are), try the alkaline detoxification diet. This helps rid the body of acid wastes that can create inflammatory and degenerative changes in the body. In the morning, upon arising, drink two glasses of filtered, spring or reverse osmosis filtered water, one of which is mixed with the juice of half a lemon. After a little stretching, have one serving of a fresh fruit (apple, pear, banana, grapes or citric fruit). Fifteen to thirty minutes later, eat one bowl of cooked whole grains (millet, brown rice, amaranth, quinoa or buckwheat). This can be flavored with 2 tablespoons of fruit juice or with a little salt or tamari. For lunch and dinner, use one to two medium bowls of steamed vegetables. It is best to have a variety. This can be seasoned with better butter (a mixture of cold-pressed canola oil-1/2 cup to a half pound of butter). Use a maximum of three teaspoons daily. Around 11:00 A.M., drink one to two cups of vegetable water, saved from steamed vegetables. Add a little seasalt or kelp and drink slowly, mixing with saliva. In the evening drink herbal teas (peppermint, chamomile, pau d'arco or blends). Do this diet for three to four weeks and then every weekend for several months, then space it out to three weekends a month, two weekends a month, one weekend a month and maintain at one weekend a month. You may feel weak or have a few symptoms the first few days, but this will pass. By day three or four, a feeling of well-being should appear. If you become too week, assess your water intake & elimination. If absolutely necessary, you can eat three to four ounces of protein mid-afternoon (free range organic chicken, beans, lentils, etc. No beef, pork, etc.) The full effects of an alkaline diet do not begin to be felt for 5-7 days.

To avoid becoming acidic, chew food slowly and well (at least 35 chews per biteful), don't drink with meals, drink plenty of clean water daily, take vitamins and garlic capsules and daily acidophilus supplements. Avoid meats and too many starches. Relax a few minutes before and after meals (don't fight over the dinner table). Eat in a comfortable sitting position away from TV or other distractions.

Much of this information is from Thriving in a Toxic World. Some of this information is from Alternative Medicine: The Definitive Guide.

PERSONAL COMMUNICATION: Sometimes we seem to forget that we are all working for the same cause. Just because we have personality differences and that we clash on ideas does not mean that we should not be working together. If I had to stay in the same room with half of the group leaders for 2 weeks, we could possibly all be at each other's throats, but that doesn't mean that I don't respect what they have done and are doing for the cause. Personal agendas that cause friction need to be set aside. Comments made such as " I would work with the devil to get what I have coming to me" are not conducive to good politics and good ethics. Please, everyone, this is a cause that is bigger than all of us. Let's ALL work together to inform and support persons who have silicone-related diseases.

NEEDED: A room to rent in hours or condo in northern area of Colorado (near Denver). Have small dog & am on Soc. Sec. Disability. Please call Barbara @ (310) 398-5880.

BOOKS: Surviving the Toxic Crisis and Thriving in a Toxic World by William Randall Kellas, Ph.D. and Andrea Sharon Dworkin, N.D.

PRODUCTS AVAILABLE: Why should we take antioxidants? Disease is evidence of free radical damage! When we have a chronic condition, that is evidence that free radicals are abundant in our bodies. Free radicals cause damage to the cells and therefore cause us to age (all parts of us) much more rapidly.

So far, the very best antioxidant I have found is Activin OPC Oxi-Genic from HT. I have ceased taking all the others in favor of this one because it contains the most up-to-date ingredients and therefore is less expensive than the 4 others I was taking. I take one capsule with each meal. It is available from Health Technologies Center, (800) 765-0140. Give them my #: 24169. Cost is $37.50 for 60 capsules, but if you also order coral calcium and Assimilator (the great ionic mineral product---far superior to colloidal minerals), you can get all three together for $107.50. These are the three products from this company that I take regularly.

I am just now adding a 4th product from this company. It is called C-Max and is 99.99% effective in eliminating yeast, especially Candida. It is expensive ($43.75) but I think it will be worth it for the help it will give me.

I have raised my body's pH level by 10 points by taking coral calcium. My fungal problems have gotten much better also because this makes my body more alkaline instead of acid.

LYNDA ROTH, EDITOR

PREVIOUS NEWSLETTER INFORMATION: Previous issues of newsletters available: $2 each U.S., $3 Foreign. 1/93 is the first available issue. Please indicate months' desired and proper sums. Some covered subjects: Auto-immune 1/93; Fibromyalgia 2/93; Medical Testing 3/93; Sjogren's 4/93; Vasculitis 4/93; Arthritis 5/93; Chronic Fatigue 6/93; Lupus 7/93; Irritable Bowel Syndrome & Inflammatory Bowel Disease 8/93; Insurance 8/93, 9/93; Misc. Med. Info. 9/93; Multiple Sclerosis 10/93; Spasmodic Torticollis 10/93; Hypoglycemia 11/93; Antibodies 12/93; Reflex Sympathetic Dystrophy 1/94; Misc. Med. Info. II 2/94; Scleroderma 3/94; Costochondritis 4/94; Peripheral Neuropathy 4/94; Class Action 5/94; Fungal Infections 6/94; Hypercalcemia (low calcium) 7/94; Raynaud's Phenomenon 8/94; Fibromyalgia Update 9/94; Sarcoidosis 10/94; Free Radicals 11/94; Porphyria 12/94; Interstitial Cystitis 1/95; Mixed Connective Tissue Disease 2/95; Flap Procedures 3/95; Misc. Med. III 4/95; Thyroid Disease 5/95; Stress 6/95; Natural Healing 7/95; Adrenal Malfunctions 8/95; Multiple Myeloma 9/95; DHEA 10/95; Chelation Therapy 11/95; Sleep Disorders 12/95; Meniere's Disease 1/96; Amino Acids 3/96; Enzymes 4/96; Minerals 5/96; Aluminum Toxicity, DHEA Update 6/96; Addictions & Food Sensitivities 7/96; Misc. Med. Info. IV 8/96; Misc. Med. Info. V 9/96; Misc. Med. Info. VI 10/96; Misc. Med. Info. VII 11/96; Transient Ischemic Attacks 12/96; Symptoms of Breast Implants 1.97; Pap Tests 2/97; Parasitic Infections 3/97; B-Complex Deficiency Syndrome 4/97; Legal info. and info. on Alternative Medicine is contained in most issues.

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 wemay 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.

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