Lamb/sheep/goat/chicken/fish/

broccolli , egg plant, spinach, lettuce,beans and pea's corn [ limited ] and all things leafy green

tomato's are acid prone for the tummy and start aches and pain's.

goat dairy products are far more human cmpatible than any other milk and carry far more calcium. Babies love it and goats are a great and smaller mammal to deal with on a farm. :)

The goat's genetically determined distribution of body fats (to peritoneum and internal organs, no intermuscular) and composition of these fats (low saturated; high polyunsaturated/saturated fat ratio) enable it to be considered "user friendly" in our modern health conscious society. In addition, the goat supplies a nutritious "white gold" milk.

1. Consumer Reports. 1992. "Is our Fish Fit to Eat", February, pp. 103-120.

2. Devendra, C. 1988. The nutritional value of goat meat. Proceedings (IDRC-268e) Goat Meat Production in Asia. March 13-18, pp. 76-86.

3. Eastridge, J. S. and D. D. Johnson. 1990. The effect of sex class on nutrient composition of goat meat. International Goat Production Symposium, Oct. 22-26, pp. 143-146.

4. Emholm, C., J. K. Huttunen, and P. Pietinen. 1982. Effect of diets on serum lipoproteins in a population with a high risk of coronary heart disease. N Engl J Med., 307:850-855.

5. James, N. A., B. W. Berry, A. W. Kotula, V. T. Lamikanra, and K. Ono. 1990. Physical separation and proximate analysis of raw and cooked cuts of chevon. International Goat Production Symposium, Oct. 22-26, pp.22.

6. Nutritive Value of Foods. 1981. Home and Garden Bulletin, Number 72, U.S.D.A., Washington, D.C., U.S. Government Printing Office.

7. Park, Y. W., M. A. Kouassi, and K. B. Chin. 1991. Moisture, total fat and cholesterol in goat organ and muscle meat. J. Food Science 56(5):1191-1193.

8. Pond, W. G. and J. H. Maner. 1984. Swine Production and Nutrition. The Avi. Publishing Company, Inc. Westport, Connecticut.

9. Potchoiba, M. J., C. D. Lu, F. Pinkerton, and T. Sahlu. 1990. Effects of all milk diet on weight gain, organ development, carcass characteristics and tissue composition, including fatty acids and cholesterol contents of growing male goats. Small Rumin. Res. 3:583-592.

10. Stromer, M. H., D. E. Goll, and J. H. Roberts. 1966. Cholesterol in subcutaneous and intramuscular lipid depots from bovine carcasses of different maturity and fatness. J. Animal Sci. 28:454.

11. Terrell, R. N., G. G. Suess, and R. W. Bray. 1969. Influence of sex, live-weight and anatomical location on bovine lipids. 2. Lipid components and subjective scores of six muscles. J. Animal Sci. 28:454.

12. U.S.D.A. Handbook #8, 1989.

http://www.drlwilson.com/Articles/calcium.htm

THE MYSTERIES OF CALCIUM

Calcium is the most plentiful element in the body, with most in the bones, teeth and nerves.  Calcium helps regulate cell permeability, acid-base balance, hormone secretion, cell division and osmotic balance.  It stabilizes cell membranes, helps muscles relax and slows nerve transmission and the heart rate.  Calcium helps prevent fluid loss from cells and from the blood.

Calcium inhibits thyroid-releasing hormone and increases insulin secretion.  It inhibits the sympathetic nervous system.  It is required for phosphorus metabolism and energy production in the krebs cycle.

Calcium is also important as a detoxifier, preventing the uptake of lead and cadmium.  Blood clotting and fat digestion depend on calcium.   Calcium is extremely alkaline-forming and helps maintain the pH balance of the blood.

Stability, hardness and physicality are qualities of calcium.  When deficient, one becomes weak and fragile.  When calcium is in excess one becomes rigid and immobile.  Its opposite elements are phosphorus and sodium, elements that activate and dissolve things.  Calcium personality types are earthy, plodding, steady and blunt.  They often move slowly and awkwardly and are unpolished in their language and mannerisms.  They develop slowly and have a great potential for love and spirituality.  

SYMPTOMS OF CALCIUM IMBALANCE

Deficiency symptoms may include osteoporosis, rickets, non-union of fractures, tooth decay and insomnia.  Teeth, fingers and other bones may be misshapen.  Posture can be poor and legs bowed.  Other symptoms are muscle cramps, irritability, hyperkinesis, hyperacidity, bruising, high blood pressure, fight-or-flight reactions, fast oxidation, lead and cadmium toxicity, tetany and cancer.

                  Calcium toxicity symptoms may include fatigue, depression, defensiveness, muscle weakness, pain, arteriosclerosis, arthritis, kidney stones and gall stones.  Others are bone spurs, rigidity, slow metabolism, constipation, social withdrawal and spondylitis (rigidity and inflammation of the spine).

                  In many instances, calcium is biounavailable.  This means it is present, but cannot be used properly.  This condition causes symptoms of deficiency and excess at the same time.

CALCIUM IN THE LIFE CYCLE

                  Babiesπ bones are flexible, as is their personality.  Motherπs milk is a rich source of calcium and vitamin D that help create a calcified skeleton.  Pasteurized and homogenized milk is not as good a source of calcium.  In earlier times, well-informed doctors recommended only raw, certified milk for children.  This is milk from cows that have been rigorously inspected for disease.  The farm must also meet very high standards of cleanliness.  This excellent food is outlawed in most states, not for health reasons as is claimed, but for political reasons.

Pasteurization allows milk from sick cows to be used and permits lax cleanliness practices on farms.  Cooking the milk renders its calcium far less biologically available to the body.  It also damages the protein in the milk, making it much harder to digest.  Copper rollers used in pasteurization add excess copper to the milk.  Goat milk is less damaged by pasteurization.

Homogenization is another insult to milk.  Vigorous shaking breaks up the fat particles so they stay in solution instead of rising to the top.  However, the small particles are absorbed directly into the blood stream instead of being digested properly.  This renders the milk less healthful. 

                  Children need lots of calcium for their bones and nervous system.  Substituting soda pop for more nutritious beverages is bad news for children.  Soda pop has no calcium and contains sugar and phosphoric acid.  Sugar upsets calcium metabolism more than any other substance.  Phosphoric acid binds calcium in the intestines causing calcium loss.   Refined flour is also devoid of calcium.

DIETARY SOURCES OF CALCIUM

                  Excellent calcium foods include raw, certified milk, cheese and yogurt, sardines, caviar, cod roe, gelatin, smelt and egg yolks.  Soups made with bones such as a ham hock or veal joint broth are also excellent sources.

The next best sources are kelp, brewerπs yeast and other sea vegetables.  Other good sources are almonds, sesame seeds, beans and filberts.  Dark green vegetables such as kale, collard greens, mustard greens, turnip greens, comfrey and carrots are also good.

Corn tortillas or corn chips prepared in the traditional way with lime are other good sources.  However, most corn chips do not contain lime and are not a good source of calcium.  Neither is corn bread or corn eaten as a vegetable.

Strict vegetarians often develop a calcium deficiency.  Although they eat greens, nuts and seeds, the calcium from these sources is less available than in eggs and raw dairy products.  Their diets are also low in calcium synergists such as vitamins A and D.

CALCIUM SUPPLEMENTS

The best calcium supplement in my view is kelp.  It combines calcium with other minerals needed for calcium utilization.  Those with a hyperthyroid condition may have trouble with the iodine in kelp.

Other excellent supplements are calcium citrate, calcium chelate and calcium gluconate.  Bone meal used to be popular and is a superb supplement if it is not contaminated with lead.  Microcrystalline hydroxyapatite crystals (MCHC) is another excellent form of calcium.  Other forms are calcium lactate, orotate and aspartate.

Calcium carbonate, phosphate, dicalcium phosphate and tricalcium phosphate are not well absorbed as the phosphorus binds tightly to the calcium.  Calcium carbonate is common chalk.  It is extremely alkaline and found in Tums, other anti-acids and coral calcium.  People who are too acidic may benefit from it.  Unfortunately, stomach acid is important for digestion and reducing it too much interferes with digestion.

In his book, Barefoot on Coral Calcium. An Elixir of Life?, author Robert Barefoot mentions that coral calcium contains significant amounts of iron, aluminum and strontium.  Aluminum and strontium are poisons.  Most people also have toxic levels of iron stored in their livers.  Dr. Barefoot dismisses this problem.  His book is poorly referenced and contains no scientific studies of coral calcium.  I suggest avoiding coral calcium.

Toxic metals can make one feel good for a while.  This is one reason people smoke cigarettes which supply lead, arsenic and cadmium.   Problems develop ten years later or more.

                  Many commercial calcium preparations in drug stores also contain lots of sugar.  Some are even sold like candies.  These products will be less effective because sugar upsets calcium metabolism.  Usually the calcium is in the form of calcium carbonate, a poorly absorbed form.  I suggest avoiding calcium carbonate and sugared calcium supplements.

CALCIUM AND THE FIGHT-OR-FLIGHT RESPONSE

                  In the fight-or-flight response, the body excretes calcium in the urine.  This causes the muscles and nervous system to go into a state of alertness to respond to stress.  Those who live in a fight-or-flight pattern much of the time are continuously losing calcium in their urine.  These sympathetic dominant individuals overuse their sympathetic nervous system.

                  In the exhaustion stage of stress, calcium is lost into the tissues.   Low tissue sodium and potassium levels prevent calcium from remaining in an ionized or soluble form in the blood.  Instead, it precipitates and deposits in many body tissues including the joints, arteries, kidneys and elsewhere.  This is a cardinal sign of aging.

The process is identical to calcium deposition on faucets in hard water areas.   åHardπ water does not contain enough sodium to åsoftenπ the calcium.  Adding salt or potassium with a water softener prevents calcium deposition.  The same approach can dissolve calcium deposits in the body.  Eating salt and potassium are not adequate.  One must restore adrenal glandular activity which is responsible for normal retention of sodium and potassium.

CALCIUM SYNERGISTS AND ANTAGONISTS

                  Copper is required to fix calcium in the bones and helps raise the tissue calcium level.  Many people have biologically unavailable copper which causes their calcium problems.  In fast oxidizers, copper deficiency contributes to a calcium deficiency. 

Iodine is required for thyroid activity.  Low thyroid activity is associated with biounavailable calcium and calcium deposition in the soft tissues. The best sources of iodine are fish and sea vegetables like kelp or dulse.   Iodized salt is not as good a source.  Boron apparently improves adrenal gland activity which makes copper more available.  Boron is found in nuts, beans, leafy greens and bone extracts.

Vitamins A and D are important for calcium utilization and are commonly deficient. Vitamin D is only found in enriched milk, fish oils and from sun exposure.  Vitamin A is only found in fish oils and meats.  Beta carotene must be converted to vitamin A.  Low thyroid activity impairs the conversion.  I always recommend vitamin A, not beta carotene.

Magnesium helps keep calcium in solution.  Sources are nuts, seeds, kelp, wheat bran, wheat germ, molasses and brewerπs yeast.  Silica is another calcium synergist.  It may be transmuted into calcium according to Dr. Louis Kervan, author of Biological Transmutations.  Chlorine, hydrochloric acid in the stomach and adequate protein in the diet are also required for calcium utilization.

Adequate adrenal hormone levels are also essential for proper calcium metabolism.  Hormone replacement therapy I consider a last resort if no other method can be found to improve natural hormone production.  Usually, a complete nutrition program including the mineral boron will improve natural hormone production.  Infrared light is also extremely beneficial for calcium metabolism. 

CALCIUM ANTAGONISTS

                  Sugar upsets the calcium/phosphorus ratio in the blood more than any other single factor, according to researcher Dr. Melvin Page.  It also stresses the adrenal glands and upsets the hormone balance which affects calcium metabolism.

Lead and cadmium antagonize and replace calcium in the bones and elsewhere.  Hidden lead toxicity, for example, is an important cause of weak bones and osteoporosis.  Tests for toxic metals may not reveal it when it is deeply embedded within the bones.  A hair analysis may reveal it later as it comes out of the body through the hair and other routes.

                  Excessive fluoride replaces calcium in the bones, causing them to become brittle and weak.  Sources are fluoridated tap water, some mineral waters, foods contaminated with fluorides from the soil and foods processed with fluoridated water like reconstituted fruit juices and soda pop.  Some foods are naturally high in fluorides like tea.  Drinking fluoridated water or consuming products processed with fluoridated water is a cause of osteoporosis.

                  Excess phosphorus binds calcium and impairs its absorption from the intestines.  Sources are soda pop and diets very high in animal protein.  Phytates found in high grain diets, soy and other beans bind calcium preventing its absorption.  Excessive oxalic acid found in spinach, cranberries, rhubarb and tea can interfere with calcium utilization.  Low stomach acid and low protein diets impair calcium utilization.

TESTING FOR CALCIUM

Serum calcium tests are of little value.  The body robs the bones to keep the blood level in a narrow range.  Excess calcium is quickly moved from the blood into the tissues.  Urine tests are a little better, offering a way to measure how much calcium one is excreting.  However, they are subject to daily variations due to stress, hormonal factors and others.

X-rays are helpful to assess bone density.  However, osteoporotic changes are a late indicator of calcium imbalance.  Also, osteoporosis can be due to other imbalances besides calcium.  The bones require boron, magnesium, manganese, zinc, copper and phosphorus in addition to calcium.  Low bone density does not necessarily indicate a greater need for calcium.  A normal bone density test does not necessarily mean oneπs intake is sufficient.

I use hair mineral testing by a laboratory that does not wash the hair in order to assess calcium needs.  This is a tissue test.  Calcium levels vary tremendously in the hair.  The tissues become depleted long before blood tests or x-rays reveal a deficiency.  Fast oxidizers generally have a low tissue calcium.  This is due to excessive thyroid activity which lowers tissue calcium.  Slow oxidizers often have a very elevated hair calcium level due to calcium precipitation in the soft tissues of the body.  In this case, calcium becomes biounavailable.  That is, an excess occurs in the tissues but it is not available to the body.  It becomes essentially a toxic mineral, causing calcium deposits in the joints, arteries and elsewhere.

CORRECTING CALCIUM IMBALANCES

I prefer people obtain calcium from their diet.  Three regular meals that include  sardines, goat milk, goat cheese, eggs, nuts, seeds and greens will provide a healthful calcium intake.

When the hair calcium level is either above 100 mg% or below 35 mg%, I suggest supplementing with kelp, calcium citrate or calcium chelate.  An adult dosage is about 600 mg of calcium and 400 mg magnesium daily.  If the imbalance is severe, I may double the dosage.  Synergistic nutrients must also be supplied.

CONCLUSION

                  Calcium is one of the most vital minerals in the human body.  Imbalances are associated with serious illnesses including cancer, osteoporosis and cardiovascular disease.  Most diets are low in available calcium.  Correcting calcium imbalances would improve the health of millions.

References

Jensen, B., The Chemistry of Man, 1983.

Kervan, L., Biological Transmutations, 1972, 1998.

Page, M., Degeneration-Regeneration,  1949,1980.

Pfeiffer, C., Mental and Elemental Nutrients, Keats Publishing, 1975.

Price, W., Nutrition and Physical Degeneration, 1949, 1979.

Schroeder, H., The Trace Elements and Man, Devin-Adair Company, 1973.

Wilson, L., Nutritional Balancing and Hair Mineral Analysis, 1998.

Home * Hair Analysis * Saunas * Books * Articles
Detoxification Protocols * Courses * About Dr. Wilson

Calcium deficiency and supraorbital headache: A clinical study of adult subjects

• Luigi Janiri¹¹Dept. of Neurology and Psychiatry, Catholic University of the Sacred Heart, Rome;
• Giuseppe Gallo²²Dept. of Social Medicine, State University (1st), Rome, ltaly
• Walter Nicoletti²²Dept. of Social Medicine, State University (1st), Rome, ltaly

• ¹Dept. of Neurology and Psychiatry, Catholic University of the Sacred Heart, Rome; ²Dept. of Social Medicine, State University (1st), Rome, ltaly

Special Bulletin for the

Hypoparathyroidism Association, Inc.

Fall 2007

            This bulletin is intended to bring you up to date on what is happening is happening in the Hypoparathyroidism Association.  Even though most of the items are covered on our Web Site and in our Quarterly Newsletter, this approach gives me the additional opportunity to bring these important matters to your attention.

New Chapters and Associations

            We have had some changes in our basic organizational structure.  A new chapter has been organized for the members who live in California and a new Association has been formed for the European Community countries.  Information on who to contact is shown below....

California Chapter

Melanie Amaral, President

Phone number:                1-877-569-0606
E-mail:                  mamaral@sbcglobal.net

Hypoparathyroidism Eurodis

(For all the European Community Countries)

Ruth Vidarsdottir, President

E-mail:                        gudrunruth@internet.is

The Associations being formed outside of the United States are considered to be independent of the parent Association because of individual laws within their countries.  We are not competing for members and encourage everyone to maintain membership in the local Associations as well as ours.  Our primary mission has not changed and together we will eventually help improve personal and professional awareness and knowledge about Hypoparathyroidism, a rare medical disorder which has “invaded” our lives.  All of the Presidents have worked very hard to form their Associations and to promote them within their countries and would welcome your support and participation in their work.

Chapters organized within the United States are still considered sub-chapters of the Hypoparathyroidism Association, Inc.  All of them are non-profit chapters and are considered tax-exempt under our Group Exemption with the Internal Revenue Service under Title 501(3)(c) of the IRS Code.

We urge members living within these areas contact the Presidents of those chapters and Associations and support their hard work.  Click “HERE” for a more complete listing of all of our Chapters and Associations outside of the United States.

Fall Issue of the Hypoparathyroidism Association Newsletter is On-Line!

            The Fall issue of the Hypoparathyroidism Association Newsletter is on-line.  This important issue deals primarily with the 2007 Hypoparathyroidism Association Patient Conference held in June 2007 in Arlington, Virginia.  A more complete report of the conference proceedings will be available on the web site in the near future.  We are planning to add a “Conference” heading on the web site, which will eventually contain information on conference proceedings, photographs from the annual conferences, and information on upcoming conferences.

Click “HERE” to read the fall issue of our quarterly newsletter.

Update on Dr. Norman’s Study of Surgical On-Set HPTH

            We have been assisting Dr. Jim Norman for about 18 months to help him collect information for a research paper he wants to write for a major medical journal.  As of October 22, 2007, 219 members have completed the survey, which will be used to document for the first time the impact of surgery on the thyroid gland, parathyroid glands, and the neck can have on the patient’s life.  Dr. Norman hopes to show his colleagues that the surgeon’s experience in the specific operation being performed can have a profound effect on the patient’s quality of life and their health.

            Preliminary results will be available on our web site when the complete conference proceedings are available on our web site.

            We still need a minimum of 31 additional surveys to be completed by our members in order to validate his findings.  We encourage you to complete the survey if you ended up with Hypoparathyroidism because of surgery on your thyroid gland, your parathyroid glands, or your neck.  The survey can be found in the Member Section on our Web Site.  You will need to use the USER NAME and PASS WORD we sent you in order to give you access to that section.  The diagnosis in your medical profile will also need to be listed as Surgical On-Set HPTH in order to participate in the survey.

Please contact me at…   hpth@cableone.net     if you need to update your contact information and/or need your USER NAME and PASS WORD.  They will be sent to you right away so you can update your profile, if necessary, and allow you to complete the survey.

            Dr. Norman’s study will be an important contribution to medical literature and will hopefully help to reduce the number of Surgical On-Set Hypoparathyroidism patients in the future.

2008 Hypoparathyroidism Association Patient Conference

            The 2008 HPTH Patient Conference will be held on June 12-14 at the Legacy Hotel (formerly the Ramada Inn) in Rockville, Maryland.  Specific details will be sent to everyone and will be available in the newsletters and on our web site.

            Because of comments submitted by members who attended the last conference in June 2006 we are going to do things a little differently next time.  Some of the changes we will make include…

1)       Conference sessions will be held only in the morning, leaving time for the members to rest, tour the Washington, D.C. area, and to get to know each other.

2)       Instead of have a catered breakfast each morning; we will plan to meet at the Hotel Restaurant or at a restaurant nearby for breakfast each morning before the conference sessions.   This will allow each member to decide if he/she wants to participate, will enable them to order breakfast off the menu, and will reduce the expenses associated with attending the conference.  We think this was a good compromise and should help make the conference more affordable for everyone.

3)       About 35-40 rooms have been reserved for us at the special rate of $149 per King Room per night, plus related taxes.  A review of several hotels in the Washington D.C. area showed this to be one of the better rates available for the time frame.  The special rate will not be available once those rooms are taken or the deadline for registration is passed.  We anticipate being able to get additional rooms at that rate if necessary, but we cannot guarantee it passed the deadline.

Less expensive accommodations might be available using various discount services, such as Hotels.Com, Expedia.Com, employer benefits, and benefits from discounts from groups such as Sam’s Club, AARP, and so forth.

4)      We are going to set the Registration Deadline at May 1, 2008.  This will allow adequate us to prepare for the conference and the Hotel to plan for our needs.

5)      Registration fees will be set at $100. Per adult and $50 for children 12 years old and under.  The registration fees will be raised to $115 for adults and $65 for children 12 years old and younger after May 1, 2008.   The fee will cover the cost of the meeting room, refreshments, and the banquet. They will not cover the cost of breakfast should you decide to come and meet the members at that time.

Registration fees will not be refundable after May 1, 2008.

6)       We are going to provide a secure means to register for the conference and pay related fees through our web site.  This should be available in a few weeks.  We are going to switch credit card services and hope that the problems we experienced the first two conferences will be just that, a thing of the past.

7)      We will make every effort to provide an assortment of well qualified speakers to address such topics as ongoing patient studies, medical research, nutritional and other information important to our daily lives, and so forth.  You will also have the opportunity to meet with some of the best qualified medical experts in the world when it comes to Hypoparathyroidism.

8)       The Metro System in the Washington D.C. area is an excellent system and allows for reasonable and easy access to almost anywhere in the area.

9)       We hope to be able to arrange meetings with some of our Congressmen and Senators while in the area.   You could arrange to meet with your representatives.  We would be able to discuss the importance of increasing public and professional awareness about Hypoparathyroidism and enlist their support for additional research and a better regime for treating the disorder.

I hope you will make every effort to attend.  I think you would find it a rewarding experience, and an excellent opportunity to meet other Hypoparathyroidism patients.

HPTH Forum

            Our web master has been working hard on improving our web site, including the addition of a Forum for our members.  This forum will be an “un-moderated” forum, and will be set up so only registered members of our Association will be allowed to post messages on the Forum.  It will, however, be set up so that visitors to the web site will be allowed to read the posts and replies.

            Since it will be un-moderated, we will have to rely on the members to avoid conflicts and problems which have on occasions been a factor in other forums.  I will have to, however, reserve the right to step in if problems do arise, although I will not do so without communicating directly with the parties involved.  Personally I do not see that there will be a problem with such a feature.  Look for more details on the web site in a few weeks.

Web Site Security

            One of our concerns with the web site has always been the ability to protect the member’s information.  Initially we took appropriate steps to require members visiting the MEMBER section to have to “log in” in order to do so.  Recently we took addition steps to encrypt the entire MEMBER section once a member has accessed it.  While this may be a little inconvenient to you, we do not feel that it will interfere with accessing the information found in that section.

            We will still like to urge all of our registered members to access their profile information in the Member Section and make sure that the information is up to date and accurate.  Once you are in your profile you will be able to update any of the information.

            The information in your profile is included in the Demographics report, which uses only raw data.  That raw information needs to be accurate in order to make that feature more meaningful.  I hope you will update your information.  Your information is safe with us.

Closing Comments

            I hope that you do not mind me communicating with each of you in this manner.  With over 2700 members in 65 countries it is difficult to find an effective means of communication, and this approach has been the best solution I could find.

            I hope this e-mail finds each of you in the best of spirits and in good health.  I hope you have an enjoyable and safe Halloween and that the holidays coming around the corner are festive and rewarding for you and your families.

            Please stay in touch and let me know what we can do to improve our Association, the work we are trying to do, and our quarterly newsletter.

            We hope to be able to meet with you at our conference in Rockville, Maryland on June 12-14, 2008.    We will do everything we can to make it as rewarding and as informative as we can.

James Sanders, President

Hypoparathyroidism Association, Inc.

P.O. Box 2253

Idaho Falls, Idaho 83403         USA

e-mail: hpth@cableone.net

We are a 501 (c) 3 non-profit in which I set up in 2001, an extension of our Mother ship in Idaho Falls Idaho and our founder and director James Sanders who also has this incredibly  RARE disease along with his 5 sons. 1 in a 100,000 will  be born with this and survive.

I have primary Hypoparathyroidism and was finaly diagnosed in 2000 almost died and still cannot remember that summer hardly at all. Seizures had increased to ten to twenty a day and the physicians believed I was probably going to die as my weight dropped dramatically , food was absolutely no interest to me and psychotic behavior's became far worst. THEN one horrible weekend the vomiting would not stop and my face became animated and the cramps in my body horrible beyond what I have ever felt in my entire life. I had what the physicians call full blown tetany in my entire body, not just small areas , but visible to the eyes. Blood was drawn . my magnesium was incredibly low and the calcium was so low it was below a 6.9 that I was losing all that I know was reality and I now knew only what I was hullucinating before me.Right away the endocrinologist that was brought in knew what I had before the blood tests even came back and got the Rocaltrol into me and calcium /magnesium flowing in. I was getting better but it would take months for me to recover to some form of sanity again. I never got off the seizure meds because of frontal lobe damage. Years of it. I have calcium spurs throughout my body from damage of years. My auto immune system is taking parts now of other things and knocking them off the hook ,like my stomach does not digest hardly at all. You can lose weight this way or worse in my case I cannot lose weight at all now as I retain every last piece of lettuce.My thyroid was finally taken a bit off center and arthiritis is painful to go along with the tetany if I do not take care of myself and I forget to take my medication. OH, the memory in my mind is a total mess except for long term and that is painful. HPTH brings on short memory alott to no memory and horrible spellers lololol..

Anyway, I also have frustration abound and loads of sadness and isolation too. Many of you have a system of support , I really do not feel I have and since this is true I am going to close down the Washington State chapter , not because you folks have done one thing, it is because I feel I have not.

SO, I am placing this chapter into the hands of James Sanders , my Vice President Phyllis Beller second that motion and we needed two to agree on this proposal. My secretary is sad about this and rightfully so, Yvonne Ball.

I want to thank Phyllis and Yvonne for being apart of my team and supporting me  with complete love and hugs . These women have faced HUGE illness and are bright and couragous beyond many. I love them dearly. THANK YOU MUCH sweet ANGELS of FRIENDSHIP*

I WILL continue to send the blog updates on research however these e-mails and continue to do as much as I can in keeping up with what is and what is not in the future of HPTH research and the advances.

Thank you James and his board for GIVING US ALL the Chance to survive *

Lovingly, Shawny *

HPTH Washington State President

Board
 Phyllis Beller Vice President

Yvonne Ball Secretary

http://www.miraclehouse.org/

This is an url to look at as a possible place to stay when you are needing to be in a researc program in their area. You would have to call them for information on what  you need to do if anything other than make sure they have a room for you to stay in.

Our Indiana President , Phyllis Beller sent this onto me a couple weeks ago and as usual I forgot to send this on. MY apologies *

Shawny :)

Special Bulletin for the Hypoparathyroidism Newsletter,

Summer Edition, 2007

Dear Friends and Associates,

A few months has passed since my last general E-mail to members of the Hypoparathyroidism Association.  To begin with, the summer issue of our newsletter is on line and we are working on the fall issue, which will be our Conference Issue.  The summer issuer can be viewed by clicking on the following link…

http://www.hpth.org/index.cfm?pv=NV&DType=HTML&NLID=59

                There are a few things I need to clarify about the opening comments of the newsletter. 

First off, the work of the Association is approaching a transition stage where we entering a new phase of our work.  Ultimately we would like to be in a position of being able to raise thousands, and perhaps millions, of dollars to support medical research.  There are two patient studies currently underway, one at NIH and the other at Columbia University.  We need more patient studies investigating various aspects of Hypoparathyroidism, and hopefully a more reliable treatment for the disorder.   Even though there are several things in the “frying pan” we are years away from something we can take to the bank and benefit from.

Secondly, as we continue to grow we need to be able to adapt to our changing demographics and our changing needs.  This morning we had 2669 registered members in about 65 countries.  By way of explanation, there are essentially two people who make the work we do possible:  myself and Julie Hunsaker, my Secretary-Treasurer.  Julie does not have a direct connection to Hypoparathyroidism, although she does have an older daughter who has another rare medical disorder.  As a good friend she tirelessly devotes hours every month taking care of the obligations as a Secretary-Treasurer of a non-profit association, preparing member packets for the new members each month, and other activities which most of you experience as a finished product.  The other person is I, and I consider this to be my second full time job.

There are a few things which would help to make the work we do easier on both of us, and they entail getting a few of the members more involved in the Association.  Some ideas we have come up with include, but are not necessarily limited to the following suggestions: 

1)                                          Having a few members who would like to become regular columnists for the quarterly newsletters.  Many of you are familiar with the columns written by Ken Anderson and others who have presented their own unique perspective about this medical disorder which has invaded our lives.  It would be helpful to me personally if we had six to ten columnists who would be willing to write 1 to 4 columns a year for the newsletter and the web site.   Specific subjects could be flexible, as long as it was relative to some aspect of Hypoparathyroidism, such as reporting on on-going medical research or recently published abstracts or papers, dealing with symptoms, and so forth.  I hope some of you would be willing to step up to the plate and see what you could do.  We have asked a few of you to write about your experiences with the two patient studies, but other aspects of the disorder need to be covered as well.  Please let me know by e-mail at:  hpth@cableone.net  if you think you would like to help.

2)                                          I had asked for assistance with layout and design for the newsletter in the opening comments of the current issue.  Ultimately we would like a more professionally produced newsletter, but in the meantime the current design does work satisfactorily and changing our format is not considered necessary at this time.

3)                                          At the present time we have adequate funding for all aspects of our work.  Generous contributions from the Jameson Foundation, Charles Edwards and others provide us with enough income to meet all of our ongoing financial expenses and financial obligations.  No one Associated with our work receives any financial compensation, other than dinner for our periodic board meetings we do not anticipate this to changing in the future.  Because of the financial support we have been able to build a professional web site, sponsor Annual Conferences in the Washington D.C. area, and provide information about this little understood medical disorder to everyone without cost to them.  We simply do not have the time or the means to aggressively pursue major sources of funding to support medical research in a major way.  That might change in the future, but that does not preclude our willingness to make our resources available to medical investigators and pharmaceutical companies and others seeking more effective methods of treating the disorder.

4)                                          In the near future we will begin to build what amounts to a National and International Registry of Hypoparathyroidism Patients.  The actual mechanics have yet to be developed, but we anticipate that it will consist of a separate register of patients who are willing to share their contact information and some basic medical information with potential medical investigators looking for more effective methods for treating Hypoparathyroidism.  Participants in this project would have to sign a consent form, be willing to list the required information, and ultimately should be willing to participate in future patient studies if they are able to.

5)                                          A few days ago, the Member Section of our web site, the part which contains your profile information and features such as our Gallery, the demographics report, and so forth was made a secure part of the web site.  Not only is this section accessible by registered members it is now encrypted to protect the information the section contains.  It might make accessing the Member Section slightly more inconvenient, but we felt the step was necessary so we could protect personal information it contains.   We will continue to do everything we can to protect members of our Association and their personal information.

6)                                          We have decided that the two annual patient conferences held in the Washington D.C. area were too important to make them a regular feature of our work  We have tentatively scheduled the Third Annual patient Conference for June 11-13, 2008, to be held somewhere in the Washington D.C. area.  More details will be provided as soon as they become available, and we hope that many of you will be able to arrange your schedules to allow you to attend.  We are doing everything we can to keep the costs to the members as low as possible to allow as many of you to attend as possible.

7)                                          Lastly, and certainly not the least important, is our growth outside of the United States.  Recently Ruth Vidarsdottir, of Iceland, organized the HPTH Association Europe, to join the work of HPTH United Kingdom and HPTH Nordic Countries.  We will be contacting members in their areas to ask them to join their work as well as to continue to be part of the work we do.  By working together we hope we can ultimately achieve the goals which we have for us, individually and collectively, a more effective regime for treating the disorder.  All most of us want is to be able to live with it so that it does not have the impact on our lives as it does for too many of our members.

This sums up some of the changes which have occurred these past few weeks.  Ultimately we hope they will allow me to get things back on track and in a timelier manner.   We appreciate your patience with us through these transition times.  The importance of the journey we began in 1994 has not changed, and we sincerely hope that each of you will remain with us as continue.

Thank you for your continued support.

Sincerely,

James Sanders, President

Hypoparathyroidism Association, Inc.

After the initial shock of learning about the mistake, I was told to go to Costco, a bulk purchasing warehouse, and buy a huge bottle of Tums.  When my mouth and nose, hands, feet, legs, and/or arms tingled I was to chew more Tums.  This went on for quite some time. I had so many Tums, just the thought of them now makes me ill.  I became more tired and lethargic than ever.  The doctor down played the injury saying I would just have to take more calcium and I would be fine.  I was switched from Tums to generic calcium when I began to have severe stomach problems.  Once changed over to the calcium I began to have severe abdominal difficulties, especially the vapors.  My PCP had me bring in my calcium and we sat and watched together as she placed it in warm water and the tablet did nothing.  This indicated it was not breaking up in my system.  We changed calcium.  Many, many times we changed calcium.  I am also on four .5 rocatrol per day.

There is a three year statute of limitations on medical malpractice where I live and my husband and I waited for the doctor to do the right thing.  We waited until the time had nearly expired.  I then filed a malpractice suit against the surgeon. My case was put off many times. I finally went to trial early this year.  The one thing I never expected and was so disappointed to find out, that it is not about what is right or wrong, but manipulation of the data. By the time we went to trial I had high creatinine levels, numerous calcium kidney stones, nephrocalcinosis, the ability to understand and explain Forteo, benefits and risks, the studies at NIH and Columbia, what the future holds for our less than 4% of the population, but was unable to speak on any of these subjects due to a gag order since the symptoms, related to Hypoparathyroidism were not diagnosed within three years of filing the case.  Had I said anything I would have been held in contempt of court. Sadly, the judge understood the predicament but was sworn to uphold the letter of the law.  He, of course, heard the whole story, was very kind and sympathetic, but could do nothing besides uphold the law. The jury only heard what defense wanted them to hear. Apparently the jury found in favor of the doctor 7 to 5, it was 6 to 6 for a long time, but the swaying issue seemed to be that "everyone has some parathyroid function" and that some people have up to ten or more parathyroids in their body so there is a very good chance, according to counsel, that the other six of mine could just pop back in on full function mode at any time and I would be fine.  Imagine that? It has left me numb.

I now suffer from kidney disease, I must go in and have four stones removed, hopefully through lithotripsy, otherwise surgically, and the urologist can almost guarantee I will continue to grow more. I can not back down on calcium or vitamin D hormone without becoming severely symptomatic.  My nephrologist is concerned about me loosing my kidneys. After the botched surgery I was out cross country running with my son, fell and pulverized my tibia and hurt my back in two places. I have chronic knee and back pain. Seven surgeries on my knee, two on my back, two torn Achilles' tendons, and I am severely limited in what I can do. I suffer from depression; including the guilt which comes with putting your family through this horrible disease. The cost alone is astronomical, but the memory is so bad, too! I have a memory book. My family writes things down for me to remember so I can get things at the market, make phone calls, and remember appointments. Fatigue is so bad that some days I can barely function.

An interesting aspect I have talked over with some friends with this disease is whether it is better to be born this way or to have your health taken away from you. Either way is horrid. I however, know what it was like to be 'normal'; to not shake, to not go numb, to not count on ER's for calcium. I no longer live in that world. It is as foreign to me as space travel. However, my body remembers. It finds foreign the rolling abdominal cramps that wake me up at night in tears of pain. It remembers when my feet would never tingle unless I sat 'criss/cross applesauce' too long as a kid. It remembers not having a gag reflex every time I look at a calcium, magnesium, potassium, or vitamin D hormone capsule. It remembers not having to be scared of cold, cold winters and loving the hot, warm days of summer. My body remembers my arms and legs not pulling up toward my body and my mind actually being in control of my reflexes.

A strange but very real aspect of surgical onset for me, is that I can remember things from my past, but not my present. I worked in a mechanical industry where parts were labeled by numbers. I can stil recall those numbers as well as how to look them up on the microfiche. Learning to look the parts up on the computer is nearly impossible!  New information is frustrating and confusing. It is like I understand the language, I understand what I need to do, but the next day, I can't remember how or what to do.

I do not know if others find this frustrating as well, and please do not misunderstand me because I cherish new information available to us and the incredible work being done at NIH and Columbia, but I find myself, my selfish self, wishing I could be part of the studies, too, but the cost, when added up, is not even close to affordable on our limited income. So while I like to know what is going on and how everyone is doing, I am, at the same time, feeling left out and frustrated. I realize the information, researchers, and everything is located in the East, but remember us here in the West as we wait for information to filter in to our University of Washington, our Harborview, and our Virginia Mason, and please, please forward it to us and them.  We wait, like our ancestors, for good news from the pony express, to arrive here in the Pacific Northwest.

WRITTEN BY; Yvonne Ball

Special NOTE From Washinton Chapter Hypoparathyroidism Incorporated Association a 501 (c) 3 a non-profit organization*

Yvonne is our secretray , surgical on-set and wonderful woman. She wrote this article a few months after her trial . All I can do is feel for her and love her and of course feel /know her pain. I am a Primary/idiopathic Hp myself.

We are here for her and those who need information and to be sure to support the patient and their frustrations in understanding the new dignosis or old one in the daily lives of this rare disease.

With that knowledge , I as the Hp President in Washington State send my love and hope to you all*** know I am here to listen*

Shawny *

From the time that James Sanders determines the date of the second Hypoparathyroidism conference, I started to count the days and nights waiting for this conference. It was decided to be on 8th and 9th of June in Virginia in the United State. I was chosen to participate in this conference with speech and presentation by my doctor Nasreen Alsayed about my first year with Forteo.
When I was in the airport I remembered the memory of the previous conference. I reached the place of the conference and first people who met me were Mrs. Bridgett and Terri with her mother then James Sender and Halla Ruth, her sister silja and her mother.
In this conference, I miss some of members who I know them in the previous conference and they didn’t come in the second conference like, Lind Dinalson from United State and Neil with his brother from United Kingdom. But in this conference I know new friends like Daralin and her husband Richard from Hawaii.
There are some members I wished to meet them there but they didn’t attend like Helle from Norway, Liz from United Kingdom, Lena from Sweden Phyllis and Shawny from the United State. I wish that I will meet them in the next conference in Washington
In the conference there were very important lectures by Dr Karen Winer and Dr Mishaela Rubin regarding their study about the treatment of hypoparathyriodism disease by synthetic parathyroid hormone injection. These studies drew smile on the faces of the attended patients, for this new treatment of hormone injection with amazing results for the disease and they gave patients hope to recover.
The Halla’s documentary film represented again in this conference. At the time the movie was on, and I saw the suffering pictures in front me, it reminded me the years of pains as I watched Halla crying when she was a child and so on: all the suffering pictures in this movie, I have similar in my memory.
Then I follow presentations of important medical persons like Dr. Stephan Groft, director of office of Rare disease, ORD and Dr Michel Levin. The presentation of Dr Michel was very interested. All attendees were interest with his presentation and we asked him many questions. James Sender extended his time because of the participations.
I had my speech where I emptied some of my passion that I had been holding for so many years of pain from the disease.
My participation in this conference was very successful and will exchange my life to the best. I was suffering for over 18 years with the disease, feeling lonely and depressed and nobody care in my country about my disease. We just hear in the media about diabetes disease, osteoporosis and cancer etc…
My participation in this conference gave me more confidence in myself and I felt that there are people who are interested in our suffering and try to help and support us.
In this conference I met many patients suffering from same disease and I shared with them my experience with the disease. This is very important and vital to me.
I have also met expert physician and I asked them many questions like Dr Karen Winer and she was very concern in my condition.
There is a question, where is the media?! In this conference there is no media attend to cover the information about the conference. We don’t want speak in close and isolated room. We want the world to hear the insulting facing patients of this disease in all the world.
I return back to my country with lots of sweet memories, huge morale pushing me to continue the fight for better lives for patients of hypoparathyroidism, and with a big smile.

with my best regards,

Sincerely,

Hassan Fadhul