COALITION OF SILICONE SURVIVORS

March, 1997

Dear Silicone Survivors and Friends:

The Reno conference is just about here. Register now for this great educational experience. Get away for a weekend of fun and win(or drop) a few $$ (slots or at the tables) as well as learning more about the silicone issue. We will see you there.

Does anyone out there have written information on McCormack Implants? I think they were made by McGhan (thought I saw that somewhere in writing) but there is a woman who needs to know!!

Kathy Keithley-Johnson (Toxic Discovery Network) had a great article in the San Diego Union paper 2/19/97. I found it on the internet. It was also e-mailed to me. If you browse the internet, you will find great stuff.

Our Toxic Times, February, 1977 issue, had a great article in response to John Stossel's 20/20 vignette against chemical sensitivity. This is the newsletter of the Chemical Injury Information Network. There is no charge for this publication, but donations are helpful. Call (406) 547-3766 to become a new member.

UPCOMING EVENTS: Denver: Todd Nelson, N.D. and Shoshana Friedman, CMT are offering a 6 week course on The BodyFat Solution. The program runs Wednesday evenings from March 12 and combines 15 years of clinical experience and the latest scientific information to deliver the real answer for you. Call (303) 675-7472 for cost, information & for program application.

April 19th, Saturday, Cincinnati, OH, 8:00-5:30 at the Regal Cincinnati Hotel, 150 West Fifth St. (800) 876-2100. Cost of conference is $45. Lunch not included. If you are on government assistance & have documented proof of this, you will be admitted free. Send this proof to TDN at the address below. Speakers are: Dr. Arthur Brawer, Dr. Lu-Jean Feng, Dr. Henry Jenny, Dr. MacNamara (Radiologist), Sybil Goldrich, Kathy K-Johnson, Sandy McDougal, and Eric Kennedy (attorney). Friday evening there will be a book-signing at the hotel. Register by April 1st by sending a check to TDN, 1906 Grant Lane, Columbia, MO, 65203. This conference is presented by Toxic Discovery Network.

There will be a 3 day conference June 6-8 in Vancouver, BC. When I have a list of speakers and events, I will pass it on to you.

The Georgia Conference has been rescheduled. It will probably be Atlanta and probably in late June. It is being sponsored by TDN. Contact them at (217) 352-8220.

Chicago is planning a conference possibly for early June. When we have more details on this, we will pass them on to you.

There may be another Dow Chemical denomstration in Midland this year, but we hear that Dow Chemical has taken steps to insure that none of us are allowed to speak. (Isn't that unconstitutional??) In any case, new strategies will be devised to get our word across, so be ready to come to Midland for action. We need all of you that can travel, so plan now to come. We can fly to Chicago and rent minivans to get us all to Midland. That will cut costs down tremendously!! More later as events develop!!

If you know of conferences and events that are occurring regarding silicone survivors, please pass these on to us for posting. So much is happening that we need your help to stay informed.

LEGAL INFORMATION: The word is that Mentor survivors have mostly received their checks. However, due to an apparent screw-up somewhere (I will leave it up to you to decide where this was and who was responsible), some only received checks for $379. This is incorrect. Don't cash them until you discuss this with your attorney as you may be entitled to more funds. Some women with Mentor as well as other brands of implants are receiving about $800 and some with only Mentor implants are receiving about $1500. Women in each category should all receive equal funds. Of course we are all extremely thrilled to be so adequately compensated for all we have been through, especially since the company is making millions today.

California, among other states, is again trying to pass a tort reform bill. There is a new one in the U.S. Congress also. Get involved to fight these bills. Make these people realize that less than one percent of corporate costs comes from product liability from consumers and 29% of it comes from lawsuits against other corporations. We must continue to fight this every time the U.S. government or any individual state brings it back. If we continue to lose our consumer rights it will be a tragedy, not only for us, but for our children and grandchildren.

One woman in California with Cox-Uphoff is suing Inamed and Union Carbide. Her case should come up soon. She says they are not bankrupt and in fact made a lot of money recently. I would check with your attorney if you had Cox-Uphoff implants to see if they are aware of this situation. As you may know, Inamed is far from bankrupt and that is also true for Union Carbide.

Dow Corning: We are still waiting for Judge Spector to make a decision on which proposal he will accept in the Dow Bankruptcy. We don't expect to hear anything until mid-to-late April. Don't expect any $$ before 1998. It will take years to sort out this mess and there may have to be a number of trials held around the country to finally decide how much Dow Corning actually owes all of the damaged silicone victims. This will be a really long, drawn-out process and will take years. I get calls every week from women who think that they should be receiving a check any day from this bankruptcy settlement. My advice is to forget about it and get on with your lives and if it happens, it happens. It will not occur in the near future, so don't plan any large expenditures thinking it will come soon.

MEDICAL INFORMATION & ALTERNATIVE MEDICINE: Some silicone tubal ligation clips may be called hulkaclips. At least this is one brand name, and there may be others. If you know brand names and generic names of silicone devices, send them to me so I can publish them.

Parasitic Infections: What are they and why should they concern us? Parasites that usually affect human digestive systems are protozoan. They are microscopic and often go unrecognized as the problem. Then there are arthropod parasites such as ticks, that usually carry other parasites. There are also worms such as pinworms, roundworms, tapeworms, whipworms, etc. There are estimates that 10% of the population of the earth is affected by parasites at any given point and that three out of five Americans will have some form of parasitic infection during their lifetime.

One of the most common protozoan parasites is giardia lamblia, which is in virtually all water in the wild in the U.S. and many other countries as well as being found in overcrowded, poorly-treated swimming pools. It may also be carried by your pets. This causes digestive problems and extreme diarrhea. Visitors to Mexico, Central America and some other third world countries may find this protozoa causes them extreme discomfort but it can be contracted very easily in the U.S. from unclean food and unsterilized water. Some estimates are that 30% of the world's population carry this parasite. The most common treatment is metronisazole,(Flagyl, Metizol, Protostat), but often the giardia outlives the recommended treatment dosages. Other drugs utilized are furazolidone (Furoxane) and quinacrine (Atabrine, Mepacrine). There are also holistic treatments. Cryptosporidium, another protozoa carried by pigeon droppings and also from other sources, has wreaked havoc in city water supplies, killing some people with weakened immune systems. It causes a form of pneumonia that can then cause meningitis in those with underlying disease processes. Treatment of meningitis is with Amphotecerin B, a strong and dangerous drug. Cryptosporidium is difficult to screen out of (destroy in) city water. Blastocystic hominis is another protozoa that is linked to chronic and acute illness. I don't have much information on this one.

Entamoeba histolytica is spread person to person (it lives in the colon and rectum) or indirectly via contaminated food or water and can cause dysentery and injure the liver and lungs. Treatment can be with metronidazole, Iodoquinol (Diquinol, Yodoxin), paromomycin (Humatin). In severe infections (if it gets to the liver, it can be serious), several drugs are given together to insure that these organisms are eliminated. Dientamoeba fragilis causes diarrhea, abdominal pains, and intense anal itching. All these are readily found in the U.S. and affect many persons from every socio-economic class. Day care centers are recognized as breeding grounds for parasites. Pediatric and dental clinics may also contribute to the spread of these tiny bugs. Food grown all over the world and sent to the U.S. may have been (and still be) a heavy contributor to parasitic infestations in the U.S.

Malaria is also caused by a protozoa and is transmitted by the bite of a mosquito. It is common in tropical zones. There are effective drugs for this malady now. There is a drug (chloroquine) that can be taken by people traveling to regions where malaria is common to prevent contraction of this disease. There are also new drugs to relieve symptoms so that those infected do not suffer disastrous consequences.

Lyme disease, carried on deer ticks, is caused by an infectious organism (rickettsial) called Borrelia burgdorferi. Rocky Mountain Spotted Fever, caused by a parasite from ticks, is much more common in the NE than in the Rocky Mountains. It is treated with tetracycline if suspected or diagnosed early or by Chloramophenicol (often used in children under eight). This disease can be fatal if not treated. Yersinia pestic, from fleas, causes Bubonic Plague. Both of these parasites are treatable. Lyme disease is often confused with other illnesses. Some silicone-affected women have had false-positives on Lyme disease screens. Typhus is transmitted by lice and exists mostly in unclean places where people are crowded together but can occur with floods. The same two drugs that are given for Rocky Mt. Spotted Fever are given for Typhus.

Pinworms come from animals such as puppies and kittens and children often acquire them by handling infected pets. A single dose of pyrantel pamoate (over the counter) or mebandazole (Vermox, a prescription) will eradicate them in 90% of cases and a follow-up dosage is usually given two weeks later. Sheets, underwear and towels should be washed daily to kill all eggs. Threadworm is common in the tropics. These are often contracted by soldiers and not diagnosed for decades and can also be found in crowded, unsanitary places. These cause tenderness, vomiting, and diarrhea on an intermittent basis and are treated much the same as roundworms. Roundworms are common in Appalachia and difficult to get rid of because the eggs resist chemical treatments. Worms are treated with antihelminthic (worming) agents. These are taken with meals to improve absorption. Side effects are common, but clear up when treatment is finished. Hookworms are uncommon in the U.S. but affect 25% of the world's population. The larvae are found in the soil and they burrow into the foot and find their way to the intestines. These are difficult to diagnose and mostly cause abdominal pain but they can cause a silent anemia in children that may be severe. Trichinia spiralis are worms contracted from eating tainted pork and other meats (you should thoroughly cook all meat to prevent parasites). Fully 50% of sushi is said to be contaminated with parasites, so eating raw fish is like playing Russian roulette. Worms contracted in Africa and Asia often remain undetected for up to five years because of the lack of symptoms. Severe environmental sensitivity may be the only apparent symptom. As people age, often the hydrochloric acid in the stomach decreases and does not kill off parasites as well. Malnourishment or poor digestion may contribute to parasitic infections. Most ill silicone survivors have some form of mal-nourishment because of the fact that most of us have mal-absorption problems that keeps us from properly absorbing the nutrients we need. We must take very good supplements in order to receive proper nourishment.

In research of chronically ill people, 20% have tested positive for the presence of parasites. Even major health problems may be caused by mild parasitic infection. In one study, nearly half of the people suffering from irritable bowel syndrome were found to be infected. Intestinal parasites have been linked with chronic fatigue syndrome and chronic gastrointestinal complaints. Giardia is often found as a complication with Candida infections and the Giardia may have well been the factor that created the Candida overgrowth.

Symptoms of parasitic infections: Giardiasis, watery and explosive diarrhea as well as stomach cramps and pain. Most parasites: Intermittent diarrhea along with constipation, indigestion, rashes, hives, gas, fatigue, and allergic reactions to food. Untreated, some can cause rheumatoid and arthritis symptoms and mucous in the stools, night sweats, nausea, vomiting, fever, etc. Acute cases can cause severe problems such as malabsorption, compromised immunity, vitamin, potassium, calcium & magnesium deficiencies, electrolyte imbalance and severe weight loss. Toxicity produced by parasites can cause blackouts, muscular and skeletal pain, blood sugar swings and menstrual irregularities. Different parasites may affect you in different ways. Many more symptoms may apply. If you suspect parasitic infections, see a doctor or holistic practitioner for treatment.

Detecting parasitic infections: Difficult at best, as most laboratories are said to miss 90% of parasites in stool specimens. Some blood tests will detect antibodies to certain parasites. Immunofluorescent staining is a newer useful tool for detection. Antibodies for parasites become tagged with fluorescent dye making them highly visible under the microscope. Since antibodies only attack parasites, the fluorescent dye only shows up where there is an infestation.

Treatment of parasites is difficult. Some of the drugs given to treat them are very toxic to the body. Some infections outlast the amount of time these toxic drugs can be given. Giardia is one parasite that often outlasts the treatment. Alternative medical practitioners often find herbal medicine, diet and nutrition are the answer to parasitic problems. Rebuilding the digestive system and the immune system often takes care of the problem.

Diet and Nutrition: Eliminate all uncooked foods. Soak organic and inorganic vegetables in a salted water solution (one tablespoon per 5 cups) for a minimum of thirty minutes before cooking, cook all meats well done, eliminate coffee, all sugars including fruits and honey, sweets and fermented foods, alcohol, tofu, mushrooms, and eliminate all milk and diary products. Eat small meals, starches only every 4-6 hours (only complex carbohydrates) and do not eat close to bedtime. Nutritional supplements are extremely important to rebuild the suppressed immune system. A probiotic culture (lactobacillus acidophilus/bulgaricus or bifidobacteria) should be taken to rebuild intestinal flora (good bacteria that aids digestion).

Herbal medicine: Citrus seed extract: A highly active agent against viruses, protozoa, bacteria and yeast. This has been used in other countries for many years. Available at vitamin stores. Artemisia Annua: A Chinese remedy especially effective against Giardia. Artemisia Absinthium: Also known as wormwood, was highly prized by Hippocrates as a treatment for worms. Because it is toxic, it should be taken in combination with other herbs. Vermox: Often effective remedy for the elimination of worms, especially pinworms, whipworm, hookworm and also effective for giardia.

Chinese Medicine: Treatment depends on where the infestation occurs. In the intestinal tract, parasites are often purged with pumpkin and quisqualis seeds taken every morning for two weeks on an empty stomach. Meliae seeds are another intestinal remedy. These are stronger than pumpkin seeds and only given in severe cases. Betel nut is another common treatment. Parasites in the bile duct are treated using a tea made from the mume plum as well as some of the above herbs. Acupuncture is also utilized to help with pain and body balance. Parasites in the blood are treated with herbs such as goldenseal and coptidis. Skin parasites (which can manifest as skin lesions) can be treated with a poultice of torrae seed mixed with aloe vera gel. The immune system is always addressed along with purging the body of parasites.

Ayurvedic medicine: Bitter melon is especially effective against pinworms. It is eaten with other vegetables because it is so bitter, but one or two a day for 7-10 days is the treatment. This is repeated after one to three months. Embliaribes, vidang and kamila are used to treat roundworms. Kamila is also utilized to treat tapeworms. For protozoal parasites, bilva, neem & berberine taken in combination along with bitter melon is recommended. Nutritional supports such as psyllium husk, turmeric and acidophilus to improve intestinal flora is also recommended.

Before you decide to treat parasitic infections, seek the wise counsel of a medical (either allopathic or naturopathic) practitioner. Often it is a difficult diagnosis to make and treatment must be for the right parasite. Alternative medicine offers many solutions that are far less toxic than allopathic medicine. Personally, I would prefer to try to holistic route first because it would most likely have less side effects on the body.

This information came from Alternative Medicine: The Definitive Guide, edited by Burton Goldberg, The Columbia University College of Physicians & Surgeons Complete Home Medical Guide & The Complete Book of Natural & Medicinal Cures.

Many women have difficulty believing that they could be malnourished because they are overweight. Actually, excess weight can be one sign of malnourishment. The body latches onto weight to insure that it will not starve when it is malnourished. Many breast implant survivors have gained large amounts of weight and may well be malnourished because of our major problems with mal-absorption. Some women report that Vitamin shots as well as other nutrient injections such as Magnesium are helping them tremendously. The food supplements I have been taking for 5 years (or more) have saved my life. I had no doubt that I was mal-nourished or that I had major malabsorption problems even though I gained over 40 lb.

QUESTIONS & ANSWERS: Q. Have you heard that the Mayo Clinic is doing a study on the possible relationship of Cancer and Silicone?? A. Yes, kinda like letting the fox guard the henhourse, isn't it??

INFORMATION AVAILABLE: From the Lancet, 2/15/97, Use of Polymer Antibody Assay in Recipients of Silicone Breast Implants with a list of authors as long as my arm. I took my copy of this off the Internet, as it is not yet available at my medical library. They typically come in a month late. This is often called the Tulane Study.

PERSONAL COMMUNICATION: Remember to introduce new products, especially food supplements, one at a time. That way you can tell what they are doing and if you may have a positive or negative reaction. Our systems may have been already bombarded with so many toxins that we must be careful to move slowly to heal.

Anyone who has been turned down for medical insurance coverage because of breast implants, please fax the rejection letter or write your story of rejection anecdotal style and submit it to Deana Cole, fax # (281) 540-1102. Many office supply stores have faxes if you do not have one. Please do this ASAP.

IMPORTANT: Do you want to take part in the Quilt Project entitled Our Shattered Lives? Squares for this quilt will be made by survivors and will be put together by a survivor. Contact Beth West, P.O. Box 268, Glide, OR 97433 (541) 496-3820 for more information.

In speaking with other group leaders, we find it incredible that many of the women who have suffered from breast implants are only interested in information if it means that they are going to receive money from the settlement or from lawsuits. They don't seem interested in information on how to heal because they have to pay for that. Even if they can afford to do it, it doesn't seem to interest them because they don't receive money for it and their insurance doesn't pay for it. As hard as I have fought to regain my health and as much as it has cost me, it was (and is) the most important thing to me. If I never receive a $$ (and since I had Mentor, I expect very little) but regain my health, I will have regained everything!! Money could never buy my health (although it could pay for some of my supplements) and could never help my body detox. Sometimes I wonder about our priorities in life!!

I realize that many women feel that they need the $$ from the settlement to be able to get treatment, but most things you can do to heal cost very little. Attitude is everything!! Reading and avoiding foods and chemicals that are bad for you costs very little. Avoiding sugars, tobacco and alcohol costs nothing. Please look at your priorities and see if there is something you can do for yourself that will help you heal!

I understand the whole concept of justice, but that does not explain, to me, the apparent indifference of many women to avenues to better healing and health. In fact, many of the women who have contacted our organization only did so to find out how to access the class action and to get a settlement. Many still have their implants, even with all the symptoms, and are not willing to find out what they need to do to help their health. Sometimes this thought is over-whelming to me. I simply cannot understand the logic. Without our good health, what do we have??

BOOKS: Healing With Whole Foods by Paul Pitchford. Solving The Puzzle of Chronic Fatigue Syndrome, by Michael Rosenbaum and Murray Susser (Contains a chapter on parasitic infections). Wellness Against All Odds, $21, available from: Center for Advancement in Cancer Education, P.O. Box 48, Wynnewood, PA 19096 (610) 642-4810.

PRODUCTS AVAILABLE: I have great new information on Immunol 500 and all the wonderful things it can do for your body. Call or write (fax or e-mail) me. Do the same for information on Coral Calcium. Both of these products also offer a great opportunity for women to earn a living.

Remember to contact me for information on wonderful magnetic products for energy and wellness. I can't tell you how much better I am because of these products.

THIS MONTH'S POEM:

The Check

by Lynda Roth

As I sit here and look at this pitiful check
Made possible by Mentor for me
I reflect on all the articles I've read
On the women and their attorney's greed.

For the hell breast implants put me through
Amounts to $300 per year
The loss of my job and of my health,
Is worth very little, I fear.

Now, I should have been rich,
That's what I read
All I wanted was money
That's what they said.

They compensated me well??
These people with dough
While the company makes millions
I have nothing to show!!
Except for the years
That I suffered and cried
And the body that aches
And the remembrance of lies.

You tell me that all I wanted to do
Was get on the gravy train
I almost died from these awful things
And I still live with the pain.

My attorney too, was compensated well
He was paid for one hour's work
But to hear it all in the daily news
He deserved nothing more, he's a jerk!

Well I have news for all who care
(And I suspect they're few)
You could never pay me enough
For all you put me through!!

But I won't let you take my soul
So I will move ahead
And life goes on, one day at a time
As the philosophers have said.

I reclaim my life! You can't have it!
I will fight for health all my life
And I believe in ultimate justice
You will someday pay the price.

The universe has ways of evening the score
This I will always believe
So enjoy your sullied profits now
For someday you will grieve.

THE OPINIONS EXPRESSED IN THIS NEWSLETTER 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.

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. Info. 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; plus Legal info. & Alternative Medicine info. 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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