May, 1994

Dear Silicone Survivors and Friends:

COMPUTER FUND: We have collected about half of the funds we need to repair and update the computer. If you are able to make a donation, we appreciate any amount you can give. We must replace the hard drive, replace the controller card, and replace the monitor. We also need memory chips. Financially, this is difficult for a non-profit group and we need your help.

UPDATE ON WHAT THE COALITION IS DOING: I handle approximately 50 phone calls per day. We send between 200 and 300 new packets per month to new women at the cost of approximately $5.00 per packet. In March we sent about 200, in April we will send at least 300. 250 packets cost approximately $1250 per month. Additional costs are for phone, FAX, other copies and postage, equipment and upkeep, supplies, and travel. Your newsletter subscriptions and your donations make this informational service possible. Help us to keep helping others with your donations.

UPCOMING EVENTS: Our large group meeting in Colorado this month will be a Legal Forum (Panel of Attorneys) at the DU Law School Lowell Thomas Building, 1900 Olive Street, Denver. The closest cross streets are Quebec and Montview. Take Montview West from Quebec to Olive, go North on Olive to end of street and there will be a dark-colored brick building. That is the Lowell Thomas Building. The meeting is Room C-85, just past the large auditorium after you enter the building. There is ample parking one block back on Olive behind the Houston Fine Arts Building. Cost of this meeting is $5.00 for consumers and $10.00 for professionals to offset costs of mailing notices, etc.

The May Conference in Minnesota will be in Bloomington on Sunday, May 22nd, 8:00 A.M. to 7:30 P.M. at the Crown Sterling Suites (Airport Suites), 7901 34th Ave. South. Call (612) 854-1000 to reserve a room. Suites are $109 per night which includes evening social hour and breakfast cooked to order. These rooms will sleep 4 persons, so share with a friend or three. There are numerous other hotels in the area within a mile of the conference site. Cost for the conference is $30.00 for consumers and $100.00 for professionals. Speakers are:, Dr. Lewy, Dr. Levine, Dr. Jenny, Dr. Illowite, Dr. Smalley, Dr. Barker, Tom Talcott, Marion Koch, and Lynda Roth. There may be other speakers that have not yet confirmed. The legal aspects will be covered by Charles (Bucky) Zimmerman, the state liaison to the MDL. Call Rita (715) 262-3929 or Sharon (612) 422-3890 for more information.

The June Conference in Cincinnati, OH will be held at the Sheraton-Springdale, Route 4 and I-275 on June 18th, 8:00 to 5:00 P.M. Rooms are $68.00 and phone # for reservations is (513) 671-6600. If you have the Entertainment Card Package, the rate is $47.50 (limited # of rooms). Cost of conference is $25.00 for consumers and $15.00 for spouses (significant others) and $35.00 for professionals, which includes a continental breakfast and a lunch. Speakers are Dr. Pierre Blais, Dr. LuJean Feng, Dr. Aristo Vojdani, Dr. Britta Ostermeyer Shoaib, Dr. Daniel Hoffman, Dr. Thomas Osborn, Dr. Mary Lou Logothetis, and Dr. Stephen Pomeranz. This is strictly a medical symposium. Nursing CEU's applied for. For more information on the conference, write to Susan Boone, 18 Hollow Tree Court, Hamilton, OH 45013.

Dr. Daniel Hoffman, Neuro-Psychiatrist, from Denver, will be the speaker at the May 14th meeting (1:00 P.M.) at South Coast Community Church, 5120 Bonita Canyon Road, Irvine, CA. The meeting will be from 1:00 P.M. to 4:00 P.M. Dr. Hoffman is on the leading edge of the research into brain damage by silicone and saline implants. He works with the QEEG (Quantitative Electroencephalogram) and the research to date with silicone damaged women shows amazing correlations to the damage that is often seen in the brains of persons who have closed head injuries. Dr. Hoffman can be reached at 4500 Cherry Creek S. Dr. Suite 230, Denver, CO 80222 (303) 757-3330.

Notify us of your SPECIAL meetings by the 23th of the month and we will try to include them in our newsletter.

LEGAL INFORMATION: We finally have a list of all the defendants in the breast implant litigation (class action), including the states where they are incorporated and where their principal business occurs. It also lists where summons and complaints may be served and the National Counsel for their defense. If you are interested in having this document, please send $1.00 and a Self- Addressed Stamped Envelope requesting the manufacturer's list.

McGhan, 3-M and GE have joined the class action. The number to call to receive information on the class action is (800) 887-6828. This number is for the National Implant Settlement Hotline. We hear that well over 60,000 women have already called this number.

Many attorneys are advising that all women join the class to find out the amount they will receive. They assert that you have nothing to lose by finding out just what the dollars will be. If you don't like the amount they tell you that you will receive, opt-out then and pursue your own case. This applies to women filed in Federal Court only, if you are filed in State Court and are not in the MDL, then seek the advise of an attorney on this. If you have a good case and excellent documentation, you may wish to pursue this individually in court. So, even if you disagree in principle with the global settlement, you may wish to think this over before making the big decision to opt-out initially. Just a little more information to confuse the issue!! My main concern with this is that once women are in the global, many attorneys may exert pressure on the women to encourage them to stay in this settlement. My advice would be that you make the decision. If you are feeling pressured, leave the situation and think it over, whether it is on the phone or in person. Don't let anyone pressure you into signing on the dotted line until you have time to process it and talk it over with significant others. We understand that the committee determining the claims can request ALL of your medical records to verify your claim.

Pluses of opting-in are that you do not have to worry about your statute of limitations unless you later decide to opt-out, in which case your statute will again begin running. If your case is already filed in court, this is not applicable to you. Joining the class action gives you more time to think about it if you are not yet ready to make a decision on what you wish to do. You can still have both options, either joining or pursuing your own case. If you do join the class, you do not have to prove causation for your symptoms. You just have to prove that you have them. You will not have to do any depositions or go to trial. If your manufacturer has taken out bankruptcy, you will at least receive some compensation.

Minuses, as I see them, are that there are so few $$ in this class action that you would have to be diagnosed with a major illness to even begin to receive an award as large as has been touted in the media. You will lose a trial date if you have one, and if you don't, you will lose the amount of time that you spend in the class action because your court date will not be set until and if you opt-out and the cases are released by Judge Pointer. You will lose the satisfaction of having your manufacturer proven guilty (but most cases settle out of court anyway, and they will not admit guilt in these cases). You will probably receive your award just as fast pursuing your own claim as in a class action. This is especially true since the payments will be stretched out over 4 years in the Lindsey lawsuit and the date when the first payments will be made could be a couple of years away.

Deadlines for the global settlement, now known as the Lindsey lawsuit: Opt-out deadline is June 17, 1994. If you opt-out, your statute of limitations resumes, so be prepared to move forward on your individual lawsuit if you intend to file suit against the manufacturer(s) of your implants(s). If you join the class action (do not opt-out) then you have to qualify for a Current Disease Claim by September 16, 1994 or preserve the right to make a claim by registering with the settlement trust no later than December 1, 1994. The fairness hearing will be held in Birmingham, Alabama on August 18, 1994. If you wish to attend this hearing, you must advise the court in writing by June 17, 1994. If you wish to make written comments about the settlement plan, they must also arrive by June 17, 1994. If you opt-out during the period between now and June 17, 1994, then you may not submit comments or protest any portion of the Lindsey lawsuit. The address to send this information is: MDL 926, P.O. Box 11683, Birmingham, AL 35202-1683. If the court approves the Lindsey class (and you know they will!), any appeals of the class with then begin as will the funding process.

If you do not have a disease that fits the Disease Compensation Categories, then you may apply for monies from one of the Designated Funds, which are Fund I - Medical Evaluations, Fund II - Explantation expenses, Fund III - Re-implantation (both before 6/1/93), Fund IV - Implant Ruptures, and Fund V - Other Expenses. 12% of the total of the settlement funds will be available for claims in these categories.

Children of implanted women born after their mother's implantation are included in the Lindsey lawsuit. A Guardian ad litem will be able to claim funds for the children. They can opt-out within a period of two years from the time that any disease process they claim is related to their mothers' breast implants manifests itself or within a period of two years from the date of majority under the laws of their state. They would not waive punitive damages. Any monies accepted by the Guardian ad litem will be subtracted from any $$ later awarded in a private lawsuit.

Attorney fees will be paid from a separate portion of the fund and therefore claimants will receive the same amount whether they have an attorney or not. Claimants who opt-out and stay in federal court will be charged 6% of their settlement or out of court award as part of the MDL expense besides payment of their private attorney's costs and fees.

Payments will be made on a schedule. This could mean that you will get a portion of any settlement you receive each year for four years. You would not receive it in a lump sum.

RATCHETING DOWN: I have been asked a number of times what this term means. The atypical categories and Funds I-V of the global settlement will be reduced by 25% if there are not enough monies in the fund to pay all claims. If there are still not enough funds, ALL claims in the global settlement will be reduced until there are enough monies to pay all claims. The reduction in amounts that will be paid to claimants is called ratcheting down, or reducing amounts to fit the $$ available.

Opting-out means deciding not to enter the global settlement (you must submit the form that will be available) or to decide to get out of the global settlement after the amount you will receive is announced. Few women are yet in or out, but forms will be distributed soon to women so they can make a choice.

From PALS, and reported in the Cincinnati Enquirer in March, 1994, a benchmark ruling has been made on the heart valve class action. The terms of this class action were not acceptable to several of the class members and they appealed. The Sixth Circuit Court refused to hear the arguments because they failed to object when the lower court was considering the settlement's fairness. If you wish to object to the Lindsey class action, do it at the fairness hearing or you will not be allowed to do so. Those who fail to learn from the lessons of history are doomed to repeat them!! This same type of ruling was made by the Supreme Court when it denied a review of the Agent Orange litigation. They questioned the fairness of an action where members did not know they were injured. This relates to our case because many still do not know if they are injured and we don't know long-term effects of silicone.

Also from PALS, under oath, in a recent deposition of a Dow Corning executive, he admitted that the number of American women with breast implants was approximately 250,000. I believe this was an error. But, I wonder?? Whose figures do we believe?? Health and Human Services has estimated 700,000 implanted women in the US.

For those of you who still believe that you will receive anywhere near the $$ mentioned on the grid, the MDL (800) line received 60,000 phone calls within a little over a week. An informal poll at our meetings shows that only half of the women have called. This will be a big one with probably as many as 100,000 women participating. There will be only a few that receive a settlement nearing $200,000 or so, and these women will have full-blown scleroderma, lupus, etc. The settlements will also be based on age as well as category, so some women (in their 40's or 50's, etc.) who have been sick for 20 years could theoretically be awarded less than a woman who is 25 and has been very ill for 2 years.

Claimants who qualify for reimbursement for implant or explant surgery will be reimbursed for implant surgeries done prior to June 1st, 1993. Any implants placed after that date will not be covered by this class action. Implants placed prior to this and removed after this date will still be covered.

From AS-IS: A class action involving the Norplant birth-control system was filed 11/8/93 in San Francisco against Wyeth-Ayerst Lab., Inc., Dow Corning Corp., Dow Corning Wright Corp., Dow Chemical Corp., Corning, Inc., and others, alleging that the product causes fatigue, weakness and other side effects. (Williams v. Wyeth-Ayerst Laboratories, Inc., CA. Sup. Ct., San Francisco City, # 956198). The suit claims that class members have suffered symptomology from the birth control device and it silicon (Silastic) component. Dow-Corning has stopped the sale of implant-grade silicone for use in the production of long-term implants (products to be implanted for over 29 days in the human body) such as heart pacemakers, shunts which drain water from the brain, tubes which keep collapsed veins open, and small artificial joints.

We have the new global settlement proposal summary (March 1994) of the class action along with unanswered questions. It is 54 pages long and is available for $5.00 plus $1.00 postage ($6.00 total). It lists the requirements for some diseases. We still have the handout on the diagnosis categories for atypical neurological, rheumatological, MCTD, etc. available for $1.00 plus SASE. Please do not send an envelope if ordering both the global settlement proposal and the diagnosis categories.

DO YOU KNOW HOW TO PROTECT YOUR RIGHTS TO MEDICAL PRIVACY? Ask your benefits office at work if your company is self-insured. If they are, they may have a different policy on releasing information than state-regulated insurance companies. Who has access to your records? If you don't like the answers, protest to your company. When you authorize release of your records, try to make it a limited release. This means try to minimize the amount of information that is sent to others. If they are looking for a particular condition, try to limit the records release to just the providers for that condition. Try to make the release a one-time document to be used by one person or agency, not an unrestricted one. This may mean writing on the release and initialing it, but you have this right. Follow up by asking your doctor to limit the amount of information he/she releases to other parties. Many offices just copy the entire file instead of looking for the particular information needed. Don't routinely fill out medical questionnaires or histories. Ask for the purpose of them and who will have access to them. Ask if they will become part of the health providers file on you and might end up in a database somewhere. Ask for a copy of your medical records. If there are inaccuracies or if you doubt any of the information, ask that it be removed from your records. If necessary, write a corrective letter and ask that it become a part of your permanent medical records. Contact the Medical Information Bureau (mentioned in a previous newsletter) and ask if they have a file on you. MIB, P.O. Box 105, Essex Station, Boston, MA 02112 (617) 426-3660. Check for inaccuracies. Don't tell any business any more than it needs to know (in other words, don't volunteer information). Remember that anything said over an 800 number line is traceable back to you. Many local businesses have caller ID and can get a record of your phone number. To protect your privacy, dial *67 before dialing your number. Pay cash for your medical treatments to cut down on the paper trail. There are companies that just gather information for companies, attorneys, etc., and they collect these records for many states. This is considered public information and the cost in minimal. (These attempts to restrict your records in a lawsuit against the manufacturers will not be successful.)

D-4 Dow Study from 1974 or 5: Retrieved from Dow's proprietary depository, this report showed that they knew that D-4 (a part of the gel and also in the envelope) affected the immune system of mice. The study showed that D4 causes interferon production which stimulates a diversity of immune responses, including impairment of macrophages' phagocytic ability. This means that they cannot fight off foreign invaders in the body. A comment in the study: "When no longer needed, this report must be disposed of by shredding, burning, or depositing in a proprietary material collection bin." Wouldn't you give your eye teeth for a week in those bins?

I have a 4-page letter from Medical Engineering Corporation dated 1/14/77 which addresses the platinum issue (platinum as a catalyst) in implant shell and gel. It relates to Surgitek implants. The letter notes that GE also used a platinum catalyst as found in current Dow Corning materials. I found it interesting. If you wish this letter, please send $1.00 and a SASE requesting the Medical Engineering letter to the address at the top of the newsletter.

Also from PALS, Dow has stated that their platinum catalyst "is a long way from being cisplatin...it's not electrically charged." They could not answer how much platinum causes adverse effects on the body? Apparently the manufacturers are reluctant to release any documents on the platinum issue. I wonder why? Listed effects of the chemotherapy agent Cisplatin are cardiac arrhythmia, hearing loss, and seizures. Anybody recognize these?! Probably all of us should have our blood tested for heavy metals!

IMPORTANT: A TIMELY REMINDER: Many women expect their MD to hold their hand and be their confidant. This may occur, but rarely does. I have said it before and I am saying it again, the most you should expect from your MD is a good medical procedure and/or good medical care. If you need support, come to your support meetings or call your local support persons. Please be aware of the Doctor's time and busy schedule.

If you have not reported your problems to the FDA, please do so. Send a self-addressed stamped envelope (SASE) to COSS for the form. Ask for the problem reporting form. Your information can remain confidential if you ask the FDA to protect your privacy.

HEALTH INFORMATION: Have you had small wart-like growths on your body since you have had your implants? Have they decreased or gone away since removal? We have heard this from so many women that we think there must be a connection.

Recently, Human Resources National Breast Milk Bank, overseen by the Federal Government, has stated that they will no longer accept breast milk from women with breast implants. They are trying to devise standards to test for silicone in breast milk. If a mother has implants and wants or needs breast milk, she can get it, with a prescription from her MD, from the breast milk bank. Jama Russano, of CATS, tells you not to feel guilty if you have parented after having breast implants. You did not do this to yourself (you were not told the truth), you did not do this to your kid(s). You are only guilty if you don't act to educate yourself to try to correct what damage you can.

Also from Jama, if you take Zantac, do not use a charcoal gas grill. You may have an adverse reaction. There is a new grill on the market that does not use lava rocks for holding in the heat. Some have said that lava rock is carcinogenic.

As we have emphasized for a couple of years, there is a great variety in the healing response of different women. Some women have improved immediately upon explantation. Some have improved quickly only to get worse again later on. Some have become dramatically worse just after explantation only to begin improving later, even one to two years later. Most women show some improvement within two years, but it could take five years. We recommend doing everything you can to remove chemical and psychological stress from your system. Eat organic foods, avoid any toxic cleaning materials, stay out of heavy traffic, especially on high smog days, install a car filter (to filter out pollutants), avoid newly painted areas, etc. There are toxic clearance diets that many wholistic MD'S and Naturopathic Doctors (Nutritional Counselors, etc.) can help with. Anything you can do to relieve the total stress on your system may well improve your symptoms. Take recommended food supplements. For many women, the best thing they have done is apply for Social Security Disability (or other disability) and begin to truly take care of themselves instead of trying to continue to work when they are completely exhausted and quite ill.

For the proposed global settlement, the spect scan is not included as one of the diagnostic tests to evaluate neurological problems for the grid. An MRI with contrast is accepted as a diagnostic test for neurological problems on the grid.

Women are asking us about whether silicone disease can affect your sex drive. From all the reports we get, it certainly can and often does. This is not true of every woman, but if it is true for you, then you probably are in the majority. Have hope, though, because experience tells us that it usually returns as you improve after explantation.

The American College of Rheumatologists has decided to recognize the diagnosis of Silicone-Related Disease (SRD).

SALINE IMPLANTS: We continually hear that some MD'S, including some of the very experts we have trusted, are still pushing saline implants. Some still state that bacteria cannot come through the elastomer envelope. This is untrue. If you place a saline implant on a counter, it will evaporate all of the saline solution. How, then, are we to believe that the bacteria cannot pass through the elastomer envelope if the saline solution can. Why, if they are so safe, have 5% of our over 2000 members had so many problems with them? Why do some of the women have terrific fungal infections that decrease when the implants are removed (saline and double lumen as well as polyurethane implants)? Why is the FDA investigating them as they did silicone implants? And, finally, why are they (saline implants) included in the global settlement? The answer is that they are bad news and have many, many problems. Those who hold out this truth are being attacked the same way that those who held out the truth about silicone implants have been attacked. The irony is that some of the same persons that spoke out against silicone implants are the ones who are attacking those speaking out against saline implants. Is this denial or what?!

Dr. Michael Middleton, of UCSD, has now (3/94) done 701 MRI breast exams on 651 patients (some were repeats or before and after explantation). 26% of the total studies have shown ruptures. Of those women who had already chosen to have surgery and were having a pre-surgical MRI, 42% showed ruptures. A few have been missed even by the MRI (of the last 130 single lumen done by Dr. Middleton where he was not able to find a rupture, there were 5 leaks and 2 intra-capsular un-collapsed ruptures. There were no extra-capsular or collapsed ruptures missed). Don't take this test as the final word that there is no rupture. Only upon removal can you be absolutely certain. Xeromammography and Ultrasound do not seem to provide results any better than this. If there was a prior rupture or suspicion of one, there is evidence in 1/3 to 1/2 of the studies. Dr. Middleton does review outside studies if asked. If a formal report is required, the fee would be $150.00. Send your MRI studies with the report by certified mail or Express mail in C/O Dr. Michael Middleton, University of California San Diego, 410 W. Dickenson Street, San Diego, CA 92103. Phone (619) 543-6414.

BALCO LABS, whose study was mentioned in last month's newsletter, can be reached at (800) 777-7122. They need participants in every phase of the study (Asymptomatic, symptomatic, and explanted symptomatic). Even women with no implants are needed to participate. If you have a sister, mother, friend, etc. who would be willing to help by donating their blood, call BALCO at (800) 777-7122. The more we help with the research, the sooner we will find answers. What this test does is to separate your white blood cells and place them with a solution in test tubes. The solution is 3 separate dilutions of 3 products, the element silicon, silicone dioxide, and polydimethylsiloxane. The tests are on the cellular level and measure the sensitivity of your white blood cells to this product. They are done in SI units (sensitivity index). If you are below the level that the test is set at, you have a normal response. If you are above, then you have an abnormal cellular response. There is no charge for participating in the study. If they have all the persons they need for the initial study, you will be put on a list to use for the follow-up study. There are other tests that BALCO does that are available today for a charge. The one that comes to mind is the test for elemental silicon in the blood.

OTHER IMPLANTABLE DEVICES: We are receiving more and more complaints about women who have only had the mesh net as a foreign object in their body (replacing muscle when there is a hernia or when a transplant of tissue is done) and have the same type of illness that we have. There is a concern that any implantable device, especially ones made of silicone, plastic, etc., are not safe. If you are considering a flap procedure that uses stomach muscles, please be aware that the majority of surgeons use a mesh to replace your stomach muscles to prevent a hernia. Besides the foreign object problem, there is greater risk of infection with the use of these mesh panels. Please carefully consider what this would mean to your body when it is already in an immune-suppressed state.

My doctor is God syndrome: Many women still believe whatever their MD tells them. This is partly societal, because for many of us we were raised in a time when you did not question your MD. Medicine, at best, is a science and an art. Sometimes it is no more than educated guess. At worst, it may be doctors covering themselves to avoid a lawsuit or to make more money. With a few MD'S today, it may be more high finances than "do no harm". Doctors can make mistakes as we all can. We see some MD'S fluctuate between helping us and trying to tell us that there is nothing wrong with implants. I think many know in their hearts that there is a serious problem, but peer pressure may keep them from admitting it. We need to be grateful for those angels of medicine who are willing to stick their necks out and help us. We should all pray for other MD'S to find the same courage and strength.

WARNING: Many women are having problems with the silicone in external prostheses. Some seem to be having the same problems that they have had with silicone implants, including the foggy brain, reashes, and all over fatigue and body aches. If you are wearing silicone prostheses and still having problems, be sure to put at least 3 covers on each prosthesis and wash all 3 covers every day. If you have the type that attaches to your body with ostomy tape, this is not practical. You may wish to consider prostheses that are not made of silicone. You may find that this reaction is temporary but it could be permanent. Some women have resorted to making their own prostheses and to finding some that are made of completely natural materials. It may be a challenge, but, if you are reacting or concerned about reacting, it may be to your benefit to look for other products to take the place of silicone.

BLEEDING DISORDERS: We are hearing that these are not uncommon with silicone women. Von Willebrand's is one example. If you have other information on this, please let me know.

IMPORTANT NEW INFORMATION: Two new papers I have just acquired are: "An Atypical Chest Pain Syndrome in Breast Implant Patients" by Lee B. Lu, B.S., Britta Ostermeyer-Shoaib, MD, and Bernard Patten, MD, and "Disquisition on Human Adjuvant Disease" by Patten and Shoaib. The first is 24 pages and is $3.00 plus $.75 postage and the second is 35 pages and is $4.00 plus $1.00 postage. Please request articles by name.

There is a new resource for women in the Michigan area. Providence Hospital in Southfield, MI. has recently formed the Providence Hospital Breast Implant Working Group. According to them, this effort represents the combined interest and activity of several Providence Hospital physicians and surgeons who have been actively involved in the diagnosis and treatment of diseases in women who have undergone prosthetic breast surgical procedures. Medical specialists from the disciplines of plastic surgery, internal medicine, rheumatology, allergy and immunology, neurology, pathology, occupational and environmental medicine, radiology, psychiatry, and neuropsychology comprise members of the Working Group. If you are a woman who is ill and believes that breast implants caused your illness, you may call them at one central phone # (800) 295-7866 to schedule an appointment with an Internist. If they believe that you need a further evaluation, they will refer you to other specialists. If you live in this area and have questions about this program, call them at the 800 number.

SCAR CAPSULES: Scar tissue, or pseudocapsules, as some refer to them, must be removed along with the breast implant in order to remove silicone that has bled or sloughed off into the scar tissue. This residual silicone causes an inflammatory response that continues to irritate the area and cause your body to build antibodies. This is true both for saline and silicone-filled implants. The best response (and the best rate of recovery) is being reported by women who have this scar capsule removed.

IMMUNOSCIENCES LAB: The ANA Immunosciences is now doing with their Silicone Implant Panel includes the Western Blot Assay to find out if any of the sub-categories of the ANA are positive or abnormal in any way. This subset includes the Scl-70 test for Scleroderma.

ALTERNATIVE MEDICINE: This one goes under the SO YOU THINK YOUR TREATMENT IS HARSH CATEGORY: or IS THIS TOO BIZARRE TO BE REAL: BEE STING THERAPY - For arthritis and Multiple Sclerosis, some people have found that being stung by bees gives them relief from their symptoms. So much so that they arrange to be stung 6, 8, 10, and even 12 times a day 3 times a week. For MS, those who undergo this therapy swear that the stings recharge their energy banks, strengthen their crippled legs, and improve their eyesight. Apparently some researchers believe that there is a connection between bee venom and neurological disorders. John Richert, MD, who heads the MS center at Georgetown University said "Bee venom ought to be studied." I'm not sure just what publication this article came from, but you may receive more information on this therapy by calling (800) 823-3460 or by FAX at (800) 436-2827. The cost is $35.00 per year to join apitherapy. (I'm not kidding, folks, this article really exists.)

For peripheral neuropathy, some have found relief by taking DL Phenylalanine from Biotics Lab, manufactured by Biotics Research Corp, Houston, TX.

For coughing, one woman told me that a product called Resp-11 from Neo-Life in Fremont, CA, gave her a lot of relief. If you are allergic to bee pollen, don't take this product.

For fibromyalgia, several women have told me that a product by Metagenics called Fibro-plex helps with the deep muscle aches. I take this product. I have improved in many ways but I am not sure just which of the food supplements has helped. I take a number of vitamins and food supplements. When I don't take them, I begin to feel tired and more symptoms show up. I believe this has to do with assimilation of the food and food supplements. If we are unable to assimilate our food, then we don't get the vitamins and minerals we need.

Milk Thistle is a natural liver detox. Try to find as pure a product as is possible.

Another possible reason for our fatigue is the failure of the body to repair the cell walls because of the damage to the connective and other tissues. Essential fatty acids can help with this. These are found in Flax Seed Oil and Evening Primrose Oil. Fresh is best.

INSURANCE: If you have concerns about the National Health Insurance, we have received some information on the single payer plan. Many are concerned that the alternatives would leave us in the same position we are now. If you wish a copy of this information, please send $1.00 and a SASE and request single- payer health insurance info.

BOOKS AND PRODUCTS AVAILABLE: CHERISHED IMAGE has a camisole that has snap attached lightweight pads designed to match the natural contour of each woman's body. Call (800) 545-0986. These seem to be especially good for right after surgery when a bra is very uncomfortable, but some women do wear them all the time instead of a bra.

A book I am definitely not recommending is the new one by Dr. Randolph Guthrie entitled "The Truth About Breast Implants" (Price $14.95 in paperback). I am not recommending it because Dr. Guthrie takes the party line on saline implants and calls them "safe" repeatedly throughout the book. The forward is by Betty Rollins (who has saline implants) and the book is published by John Wiley and Sons. Dr. Guthrie is a Harvard graduate and is Professor of Surgery at Cornell University Medical School in NY. He is Chief of Plastic Surgery at NY Downtown Hospital. I feel that this is another expert that initially helped us that has now sold us out. If you wish to call or write Dr. Guthrie and let him know about your experience with saline breast implants, his phone number is (212) 737-3140 and his address is 15 East 47th Street, New York, NY 10021-2604.

PERSONAL COMMUNICATION: One of our members, Sherrie Dillner, is requesting Colorado women to write to her regarding an amendment to the existing Colorado health law that would mandate that insurance companies pay for reconstructive surgery for any cancer mastectomy patient. Similar to Maryland law, the amendment would mandate a booklet be given to these women stating all available options, risks, etc., by the physician (we call this informed consent). This would have to be done prior to her surgery. This ensures that the woman would take this information home with her to read prior to signing a surgical consent form. This booklet would be written by a committee of professionals including physicians, surgeons, insurance representative, consumers, etc., and it would be set up by the Dept. of Health, Education, and Welfare.

When women are in a state of shock because they have been told they have cancer, few can make educated snap decisions about their health. Having a booklet such as this gives a woman and her family time to make an educated decision. If you agree with the need for this type of amendment and would like to share your breast cancer and reconstructive experience (which would give more credibility to this needed amendment), write Sherrie Dillner at 4455 Alcott Street, Denver, CO 80211. She promises to protect your confidentiality and will not submit these letters to the representatives without a document stating that your identities will remain confidential. You would have to give your permission in the letter to have it used.

A FRIENDLY REMINDER: A LITTLE TONGUE IN CHEEK COMMENT (OR MAYBE NOT?) FROM GROUP LEADERS I HAVE SPOKEN WITH ACROSS THE NATION: 22 ways to drive your group leader nuts!!! 1) Call every few days with questions instead of making contacts with other members, coming to the meetings or subscribing to the newsletters. (Remember, everyone has legitimate questions sometimes, but some members call repeatedly with questions, skip meetings, and never subscribe to newsletters where some of the answers could be found. 2) Offer to help and then have an excuse every time you are asked to do so. 3) Don't come to the meetings after she has taken all the time, energy, and expense to set them up. 4) Help yourself to the printed materials but never, never make a donation toward costs (or if you do, make one that only covers a small portion of the costs). 5) Criticize her behind her back for every little thing you perceive she does wrong, but don't offer your help to try to make things the way you wish them to be. (Remember, it is always easier to criticize than to work to try to change things.) 6) Dominate the meetings with your questions or opinions so that new members or other members do not have their questions answered or receive the help they need. 7) Scare new members with your stories about not getting any better or about particular MD'S who are willing to help the women. 8) Call up and promise to make a donation and then never send it. 9) Bounce your check to the group (or stop payment on it) and never make good on it. 10) Call her at 6:00 A.M., 10:00 P.M. and all weekend long so she has no time for herself or her family. 11) Ignore the fact that she probably is also ill and simply cannot put forth the effort that a very healthy person probably could. 12) Believe that she has all the help she possibly could need. 13) Complain about other members of the group to her instead of dealing with those members directly. 14) Don't return her messages. 15) Never volunteer to hold a meeting or help with one (providing you are not totally disabled). 16) After you receive all the help you need, forget the group ever existed. 17) Don't leave a forwarding address when you move but still wish to be on the mailing list. This ensures that the mail will have to be sent twice at twice the effort and twice the cost for postage. 18) When you call, keep her on the phone for extended periods of time so no-one else can get through to her and she can't get her work done. 19) Don't leave your phone number when you call. This insures that she will have to take the time to find it, if she has it. 20) Expect her to know the answers to everything about silicone. 21) Accuse her of mishandling the group funds, especially when she has been financially carrying the group for years. 22) Add your own gripe here!

REMEMBER, THERE ARE ALWAYS A FEW WOMEN WHO CARRY THE BURDEN FOR THE GROUP. ALL THE GROUP LEADERS APPRECIATE THOSE WHO HELP.

PREVIOUS NEWSLETTER INFORMATION: January 1993 is the first available issue. Please indicate months' desired and enclose $2.00 (US), $3.00 (Foreign), or $8.00 (Professional) each. Some subjects covered have been: Sjogren's (4/93); Testing (3/93): Vasculitis (4/93); Arthritis (5/93); Lupus (7/93); Chronic Fatigue (6/93); Irritable Bowel Syndrome & Inflammatory Bowel Disease (8/93); Reflex Sympathetic Dystrophy (1/94); Fibromyalgia (2/93); Auto-Immune (1/93); Insurance (8/93,9/93); Miscellaneous Medical Information (9/93,2/94); Multiple Sclerosis (10/93); Spasmodic Torticollis (10/93); Hypoglycemia (11/93); MDL 926 (9/93-5/94); Antibodies (12/93); Scleroderma (3/94); Costochondritis (4/94); Peripheral Neuropathy (4/94); & Legal (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 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. Yes, I want to help

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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