April 2001 Volume 2 Issue 4
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Hi, my name is Jeri and I live in Northwest Indiana. I am not sure when I became infected with Lyme the first time, or how many times I have been infected, but I do know this disease is in Indiana. I too had the flu-like symptoms in nice weather and thought it had to be a little strange for this time of year, but blew it off as a virus of some sort.
Some days I could barely move my legs but again thought wow I have really been working these muscles too hard. After a few days of taking it easy, no more pain. Then headaches that were so severe I couldn't stand to be in the sun. My ears hurt and were plugged, so I was sent to a specialist. He said everything looked normal and could not explain the ringing and plugged up feeling that was knocking me off balance.
Then my abdomen started to really hurt and again an Internist could only find that something was causing alot of stress in the intestines and colon. That was after I spent 5 days in a hospital for testing and Demerol for pain. I was sent home with little green capsules to help relieve the stressing inside. My husband had read an article on Lyme and thought we should both be tested.
While I was in the hospital the test came back. He was neg. and I was pos. At least that explained the stress inside. We started Doxy, then Amoxy, then Ceftin. And the biggy: 8 weeks of IV Rocephin. Now we're on Doxy again because the ins. co said that that is all the medical science that has been published says to treat Lyme. According to this research,taking more IV antibiotics is not going to help.
OKAY show me a doc on my review board and then I can be treated longer. I really am tired of Lyme ignorance in our world. When I first was diagnosed I went to my local Board of Health and was told it did not exist here. My jaw dropped. Here I am standing there with my cane in my hand to help me walk, and was tempted to use it as a club to inform the women I had Lyme and have never left the county.
But my better judgement was with me so I educated her and gave her some fact sheets and brochures that everyone had been so kind to send me.We are now working together to educate our community on prevention and awareness.
Good thing I didn't use a club huh? Anyway, since then I have gotten a Proclamation from the Mayor's office for Lyme prevention/Education and Awareness month in my city, and that is a start! That's all I can manage for now. Thank You
We can do it together!
A good month of April to all of you! What a pleasure it is after this long dreaded winter, to again hear birds singing and see flowers blooming. In this month's Herb Corner, I'll be covering two more anti-pathogenic herbs: juniper and ginger. Before we discuss these herbs, I'd like to once again bring to your attention the problems which exist with genetically engineered foods. You may recall that we discussed this troublesome issue a few months back. Well, the US Government has not done anything to address it, but instead has encouraged the use of more genetically engineered crops.
Back in the October issue of this column, I urged you to voice your opinions on this subject by getting in touch with your state senators and representatives, as well as the President of the United States, to request that they publicly endorse the Genetically Engineered Food Right to Know Act, known in the U.S. House of Representatives as H.R. 3377, and in the Senate, as bill number S. 2080. This legislation would require that the packaging of all foods that have been genetically engineered contain labeling to indicate this. Once again, I am urging you to do so, and have included the original form letters on this subject (sent to me by my friend Cary), which I've posted on Web pages. You can print them out, and then sign and snailmail them to your legislators. I cannot emphasize strongly enough, the problems that GE foods pose to the long-term health of the human population, nor the importance of voicing your objections to these foods. You can learn more about their dangers by accessing the link below.
Genetically Engineered Foods
Many of you may have questions as to whom your Senate and House of Representatives' elected officials are, so I've listed a few simple directions below which should enable you to easily find them. The links mentioned below are located after these directions.
*** If you have any questions at all, please feel free to E-mail me at Lymechat@aol.com and I will do my best to assist you.
Directions to follow:
1. Click on the Lookup Your State's Representative link.
2. You will be prompted to choose your state. Once you have done this you will see a space where you will
type in your zip code. You should then be able to see who your state representative is.
3. Now that you have the name of your state rep., click on the Letter To Your State's Representative link. You will see a form letter which you can print out and snailmail.
4. Click on the Lookup Your Senators link.
5. You will be prompted to choose your state. Once you have done this you will see the names of your
6. Click on the Letter To Your State's Senators link. You will see a form letter which you can print out and snailmail.
7. Click on the Letter To President George W. Bush link. You will see a form letter which you can print out and snailmail to him.
Lookup Your State's Representative
( http://www.house.gov/writerep/ )
Letter To Your State's Representative
( https://www.angelfire.com/ny4/Lyme/page6.html )
Lookup Your Senators
( http://www.senate.gov/index.cfm )
Letter To Your State's Senators
( https://www.angelfire.com/ny4/Lyme/page7.html )
Letter To President George W. Bush
( https://www.angelfire.com/ny4/Lyme/page9.html )
The Herb Corner
Juniper is from the Cupressaceae family. It has the following actions: antibacterial, antimicrobial,
antiseptic, antifungal, carminative, anticatarrhal. This herb is active against the following pathogens:
Staphylococcus aureus, Pseudomonas aeruginosa, Shigella dysenteriae, Streptococcus spp., Escherichia coli, Candida albicans and Salmonella spp.
While juniper has many different uses, it is perhaps best known for its use in the treatment of urinary
tract and upper respiratory infections. However, it can also be used to kill strains of antibiotic-resistant bacteria, and in the treatment of skin infections. Juniper can be taken in the following forms:
Tea: Steep 1 teaspoon of ground juniper needles in 6 ounces of boiling water for 15 minutes. Can be used
to treat upper respiratory infections, food poisoning and shigella.
Tincture: You can make a tincture out of juniper berries. Use a 1:5 ratio in 75% alcohol. Take from
5 to 30 drops up to three times per day.
Wash: This herb can be used to sterilize a variety of things including cooking utensils, surgical instruments
and one's hands. To make a cleaner, boil one ounce of this herb in one quart of water for half an hour. Allow it to steep overnight before using.
Berries: Juniper berries can be very helpful in the treatment of gastric problems. Consume up to 5 berries
a day for a period of two weeks as a remedy. They can also be added to other foods to kill food-borne
Steam: To use in a sauna, boil four ounces of juniper needles in one gallon of water. Inhale the steam
to clear respiratory congestion.
Essential Oil: Juniper can also be used as an essential oil in the treatment of both sinus and upper respiratory infections. Mix 10 drops of the essential oil and one ounce of water into a nasal spray bottle.
Use as needed.
*Caution -- Do not take this herb internally if you are pregnant or suffering from either kidney disease or gastric inflammation. Also, even those with normal renal function should avoid using excessive amounts of juniper, as it has been associated with kidney inflammation. Moreover, people using this herb should be aware that they may have, or may develop an allergy to juniper. Should you develop a rash or experience any other odd symptoms while using this herb, discontinue use of it immediately.
Indigenous to Asia and a member of the Zingiberaceae family of plants, ginger has the following benefits: antibacterial, antiviral, circulatory stimulant, anti-inflammatory, diaphoretic, antispasmodic, antiemetic, antifungal, hypotensive, anti-clotting agent, carminative, antiarthritic, analgesic, antitussive. This herb is active against the following pathogens: Malaria, Shigella dysenteriae, Staphylococcus aureus, Pseudomonas aeruginosa, Candida albicans, Escherichia coli, Klebsiella pneumoniae, Streptococcus spp., Salmonella spp.
Ginger is also quite useful in the treatment of colds and flu, and because of its antitussive property,
has been shown to be as effective as codeine in the treatment of a nagging cough. It also works quite
well in relieving the cramping and fevers associated with both bacterial and viral infections. The juice from
this herb can be applied directly to skin burns and open wounds to prevent infection and ease pain.
Ginger has also been used to treat a number of other illnesses. A partial list includes: heart disease, cataracts, stroke, sciatica, angina, infertility, amenorrhea, bursitis, chronic fatigue syndrome, colds, flu, dizziness, fever, kidney stones, Raynaud's disease, and tendinitis.
Ginger can be used in the following forms:
Tea: To use the fresh root -- 1 ounce steeped for 10 minutes in 8 ounces of boiling water. To use the dried
root -- 1.5 teaspoons in 8 ounces of boiling water for 10 minutes.
Capsule: To use in capsule form -- grind the herb into a powder and then encapsulate it. You can take between one to six capsules at a time up to three times a day. Works well to enhance the immune system and to improve circulation.
Tincture: To make a tincture with the fresh root use a 1:2 ratio in 95% alcohol. You can take between
10 to 20 drops three to four times a day. To make a tincture with dry root use a 1:5 ratio in 60% alcohol.
Take 20 - 40 drops up to four times a day.
Food: You can use this herb as a condiment as often as desired.
*Caution -- Women who are pregnant should avoid using large doses of this herb. Those using ginger should be aware that they may have, or may develop an allergy to it. Should you develop a rash or experience any other odd symptoms while using this herb, discontinue use of it immediately.
***Caution should be taken when using herbal supplements. Many of these while harmless at their recommended dosages, can become dangerous when taken in larger amounts. In addition, some people may have or may develop allergies to an herb that has had no prior reputation for causing allergic reactions. If you feel that you need to increase your daily intake of a particular supplement, please speak with either your physician or someone who is knowledgeable with regard to pharmacognosy (the study of drugs derived from plants).
Until next month!
Jim : )
Submit your Questions
Broccoli rabe, a relative of turnips and cabbage, adds its pungent, bitter flavor to this ensemble of powerful Mediterranean ingredients (calamata olives, anchovies, garlic) in this pasta dish.
1 bunch broccoli rabe, trimmed
2 tablespoons olive oil
1 tablespoon garlic clove, chopped
1/2 teaspoon chili flakes
5 anchovies fillets, chopped
1 navel orange, zest and juice
1/2 cup calamata olives, pitted, sliced
3/4 pounds pasta shells, ziti
1/4 cup extra-virgin olive oil
1/4 teaspoons salt, to taste
1 tablespoon flat-leaf parsley, chopped
Parmigiano-Reggiano cheese, grated, as needed
1. Cut broccoli rabe into fork-sized pieces. Rinse, spin dry; reserve.
2. Heat olive oil in large sauté, pan over medium heat. Add garlic and chili. Stirring constantly, sauté, until garlic softens, about 1 minute. Stir in anchovies, orange zest, and olives. Lightly crush them with back of spoon.
3. Cook pasta in boiling salted water until al dente (firm bite), about 8-10 minutes.
4. Add broccoli rabe to mixture in sauté, pan. Add enough pasta water to pan steam broccoli rabe. (About 1 cup pasta water for every 4 servings.) Simmer, stirring occasionally until tender, about 3 minutes.
5. Drain cooked pasta and combine with broccoli rabe in large pan. Stir in orange juice and extra virgin olive oil. Return pan to stove over medium heat to thoroughly heat all ingredients, about 2 minutes. Adjust seasoning with salt, as needed. Stir in parsley.
If anyone wants to share a recipe to put in the column please do!
Hey guess what? I'm certifiable? Yeah I know, I suppose that's not really news to you all... If you read my columns. ;-) No seriously, recently I became officially certifiable. No, the shrinks who I saw before my Lyme
Dx didn't track me down and slap the label on forehead. It's a different kind of certifiable. You see, before I became disabled I had just finished four years of schooling in preparation for becoming a Certified
Therapeutic Recreation Specialist. However the spiros had different plans for my future so I was unable to sit for my National exam, which would bestow the initials CTRS to the end of my name. Dawn Simonsen,
CTRS. Looks good doesn't it? Certainly better than Dawn Simonsen, chronic Lymie.
During a recent upswing in my health and functioning I decided It would be very Cool to have two titles: Dawn Simonsen, Chronic Lymie, CTRS. Ahhh..looks better doesn't it? So I contacted the certifying body
in my profession and found out that I wasn't certifiable yet. I had to jump through some hoops first. I jumped and just the other day the official word came. So, I'm certifiable, I have it in writing! Actually, I
suppose the more modern term that they like to use is I've obtained my "professional eligibility." Personally, I think certifiable. It's more descriptive. Next month I'll tell ya about what it's like to study for a 200 question all inclusive exam with a leaky brain. I'm sure none of you understand That ;-)! I sit for my exam on May 12th.. in case you want to send up a prayer for me. :-)
I am still recovering from last week's back to back hearings on April 11
and 12. It was GRUELING. One's ability to defend himself depends in
large part on having a receptive listener- in this case, I'm not sure
the listeners are hearing what I have to say. As we all know, much in
Lyme is subject to debate, yet the hearing process is one that is set up
to deal with absolutes. I will be a witness for probably two more
hearing dates, then my expert and character witnesses will get to speak
(if the funds don't run out by then).
There is good action on the political front, and I am hopeful that all
that has been done by you and my other supporters will have a favorable
impact, and help all future cases. Only a giant, earthshaking political
event could impact my hearing, as the hearings are supposedly closed to
outside influence. However, a major, 30 minute TV news report is due to
air within the next two weeks (I will not mention which one, out of fear
that it may still be suppressed by our adversaries). Also, a national
and very respected magazine will publish a major story on Lyme and the
OPMC that could be even more helpful. This too is due in two weeks or
so. When I hear firm dates, I will broadcast it to all of you.
My next hearing dates will be the next three Thursdays. In spite of this
dense schedule, I definitely plan to attend the LDF conference this
weekend, and hope to see all of you there. I think we all need to laugh
Even though I am burned out on the hearing process, I am absolutely NOT
going to give up this fight for me and Lyme patients everywhere. Strong
conviction, physical strength, plus the deep and sincere support at all
levels I have been receiving from you continue to give me the stamina I
need to prevail. I already am formulating plans for the next step for us
to take when these hearings are finally over.
Stay tuned, stay strong, stay united, and we will win this one.
Best wishes and forever thanks,
Submitted by: MassLyme@aol.com
April 20, 2001 *URGENT!*
Massachusetts Lyme Disease Coalition
P.O. Box 1916
Mashpee, MA 02649
TO: All Lyme Patients, Their Families & Friends and ALL LLMDs Everywhere!
The Massachusetts Board of Medicine has now received more than 75 Complaint
Letters (25 docketted for investigation) concerning Dr Allen C. Steere, Jr.,
of his cohorts (i.e., Dr Robert Kalish, Dr Mark Klempner, Dr Eric Logigian,
Dr Nancy Shadick & Dr Phillip Molloy) from their patients with Lyme Disease.
However, we are EXPANDING this investigation to all physicians similar to Dr
throughout Massachusetts who have intentionally or unwittingly been
committing acts of negligence and/or malpractice toward children and adults
in their care.
Therefore, we still do URGENTLY need MORE of the following bonafide Letters
of Complaint regarding Dr Steere and any of his Massachusetts cohorts NOW in
order to prompt an immediate day of reckoning and full-scale oversight
REFUSED or MISDIAGNOSIS and/or TREATMENT:
NEGLIGENCE or FRAUD due to:
1. direct contact with Dr Allen Steere, any physician at New England
Center (NEMC) in Boston or any physician in the State of
2. Misdiagnosis due to any false-negative serology tests done at Dr
(at NEMC) or Imugen Labs in Norwood, MA.
All Letters of Complaint should be MAILED (w/cert ret receipt) to:
Massachusetts Board of Registration in Medicine
ATTN: Consumer Protection Unit
10 West Street, 3rd Floor
Boston, MA 02111
COPIES of ALL Letters of Complaint should be forwarded to:
Massachusetts Lyme Disease Coalition
P.O. Box 1916
Mashpee, MA 02649
Once again, ONLY with your undaunted courage and support, can we really
change the medical politics of Lyme Disease and uproot the corruption that
has halted any progress in the diagnosis and treatment of this insidious
disease worldwide. Let's not look back and say that we did "TOO LITTLE TOO
LATE" but, on the contrary, let's look back and be glad that we "SEIZED THIS
MOMENT" during a revolutionary point in time when we ALL (patients & docs)
stood up together and saved our own lives and the careers of all LLMDs who
are putting themselves at risk to help our children, our spouses and ourselves
John F. Coughlan
Founder & State Coordinator
ph: (508) 563-7033, MassLyme@aol.com
From Kathleen Dixon: email@example.com
This is the legislation in NY for 2001 as of April 16, 2001. Please note the push for legislation Mandating LD vaccines in SCHOOL children.!! On Tuesday, April 24th, there is a rally at Albany from 11-2 at the West Capital Park - about the vaccine. This is part of activity by the National Vaccine Info Center and the theme is "Freedom of Choice." They oppose mandating additional vaccines for people and children. People need to contact their state lawmakers about these bills and anyone who can attend the rally should.
There is a publication called "Legislative Gazette" that goes to every member of the Assembly - and you can send a letter to them at - editor@legislative gazette.com. There is a 250 word max.
Please pass this on.
Chat for Kids with Lyme
Carla, LadyLymeChatter, is hosting a chat for kids
of all ages and parents too.
The chats are held on Monday evenings at 6:30 PM Eastern.
The chats are well supervised and are held in a private room.
Private Room Lyme Disease
Or Keyword: aol://2719:2-2-Lyme%20Disease
To join Carla's email reminder list, click below.
Kids Lyme Chat
Lyme Chatters Reminder
The Daytime Chat is scheduled for
Wednesday, April 25th
3:00 PM Est.
2:00 PM Central
12:00 PM Pacific
Click here to enter the room >> Private Room Lyme Disease
Hope to ÖżÖ you!
If you'd like your upcoming birthday announced, let us know.
You don't have to tell us your age! LOL
My Birthday is
Happy Birthday from the staff of Lyme Matters!
"Happy Birthday" chorus << Click here instant greeting
Lyme Disease Association, Greenwich Lyme Disease Task Force & Columbia University Partner in Research Center Lyme Disease Initiative 2001 introduced into Congress The arrival of spring signifies the resurgence of Lyme disease, usually acquired from the bite of a tick that is smaller than a poppyseed.
Lyme, the fastest-growing vector-borne disease in this country, is also found in eighty countries in the world. Unfortunately, much is yet to be learned about the disease, and lack of an effective test is keeping many individuals from being properly diagnosed and treated.
The Lyme Disease Association ("LDA"), an organization which recently expanded its focus nationally, is dedicated to Lyme disease education, prevention, and raising research dollars. In its search for a cure for chronic Lyme, the LDA has already funded over a dozen research projects coast to coast, some of which are featured in peer-reviewed journals such as Journal of the American Medical Association, JAMA. In addition, the LDA has sponsored several national medical conferences including the first to focus on the problems of children with Lyme disease, and LDA has become a professional development provider for the State of New Jersey, providing professional development hours on Lyme disease for teachers. Through its The ABC's of Lyme Disease pamphlet, designed for parents and educators, the LDA assists parents whose children are classified due to Lyme disease, and its LymeR Primer helps avoid exposure to the disease.
The LDA has had input into the Lyme Disease initiative 2001, a bill introduced in Congress on March 27. "My legislation, HR 1254, maps out a five-year $125 million blueprint to wage war on Lyme disease, one of our nation's fastest growing infectious diseases. This legislation will for the first time establish a prominent, coordinated federal role in Lyme disease research, treatment and education. The success the Lyme Disease Association and I have achieved in recent years to promote Lyme disease research has led me to the conclusion that a full-scale effort can bring relief to the thousands who suffer from Lyme disease, many of them children," said Representative Chris Smith of New Jersey.
"Working with Congressman Chris Smith, we have made great strides, but there remains much for us to accomplish," states LDA President Patricia Smith, a Wall Township, NJ, resident who also sits on the Board of Directors of the International Lyme and Associated Disease Society ("ILADS"), a professional medical and research organization. "Thousands of families are being affected, and our children are often the innocent victims of this illness, which can produce cardiac, ophthalmologic, and psychiatric manifestations, as well as the better known arthritic complications," she said.
To coordinate the effort against Lyme disease, the LDA decided to become a national organization last summer, and since then, it has become affiliated with several other organizations: Lyme and Associated Diseases of the Brandywine Valley (PA), National Lymenet (www.Lymenet.org), and The Greenwich Lyme Disease Task Force ("GLDTF"), (CT). It has a Pennsylvania Chapter and has also added the Manhattan Lyme Disease Support Group (NY) as one of its programs.
Since its inception, the LDA has used approximately ninety-five cents of every dollar raised towards programs. In the past year since going national and affiliating, the LDA and its new affiliates have raised about $720,000 to fight the disease. "Unfortunately, much more funding is needed, and we need a facility that concentrates its efforts on finding the answers to this Lyme enigma," says Mrs. Smith. To that end, the LDA and its affiliate, GLDTF, are creating an endowed Lyme Disease Research Center at Columbia University ("Center"). Brian Fallon, MD, associate professor of clinical psychiatry and director of the current Lyme Disease Program, will be the Center's director.
He is considered by many to be the leading expert on neuropsychiatric manifestations of Lyme disease. The LDA has funded some of his past research including the study which provided him with data needed to obtain the recently awarded $4.7 million grant from the National Institutes of Health for studying the effects of Lyme disease treatment using state-of-the-art brain imaging. According to Dr. Fallon, "The Columbia Lyme Center will serve both as a national resource for funding research and as a coordinated scientific, diagnostic, and clinical research facility for children and adults with chronic Lyme Disease. The tremendous outpouring of support for this Center from both the medical and patient community demonstrates the widespread recognition that there is an urgent need for highly focused research on the problem of chronic Lyme Disease."
Commencing fundraising for the Center, the GLDTF is holding its first annual black-tie fundraising benefit Time For Lyme at the Stamford Westin (CT) Hotel on April 28. Master of ceremonies will be Jay Thomas, Emmy award winning actor from Murphy Brown who is also known for his roles in Cheers, Love & War, and other shows and films. Corporate support for the fundraiser includes The Isabelle and Leonard Goldenson Association, Inc., UBS Warburg, Tiffany & Company, Greenwich Capital, Hoenig Group Inc., Sotheby's, Inc., Sotheby's International Realty, Sidney Frank Importers, and William Bainbridge Steele-Floral Designs. Sotheby's will oversee an auction as part of the fundraiser. "The Lyme Disease Association salutes its Connecticut Affiliate for the groundbreaking work it is doing in this area. The Center has been in the talking stage for a couple of years, and we are excited that this dream will finally become a reality," states the LDA president. The LDA will follow with a national fundraising campaign for the Center.
GLDTF co-presidents had this to say. "We are honored and delighted to be working on a national level with the Lyme Disease Association; an organization, like ours, striving to find the many unanswered questions surrounding tick-borne illness," said Deb Siciliano. "We hope other groups throughout the country will consider joining this effort. Working together and with the strong leadership of the LDA, we will find those answers," said Diane Blanchard.
The LDA can be reached at its toll free information line (888) 366-6611, at Lymeliter@aol.com, and at Lyme Disease Association PO Box 1438 Jackson, NJ 08527. Its new web site at LymeDiseaseAssociation.org will be available soon, and current information on Lyme disease may be obtained on www.Lymenet.org.
Submitted by: Chappy427@aol.com
SECOND TO NONE can be seen on Manhattan's Time
Warner cable tv service channel 67 with the following
Sunday, May 20th at 8 P.M.
Matt Forte, author and
Denise Chapman, former EMT with the FDNY
Sunday, June 3 at 8 P.M.
John Rowan, Vietnam Vets and
Dan Mahoney, retired NYPD and author
Sunday, June 17
Jon Bal, the hippie cop from the 1960's
Stan Edelman, United Dental Services, DentSave.
Remember, STN is on in Manhattan every other Sunday
night at 8 P.M. on Time Warner cable 67, the Manhattan
Neighborhood Network. If you do not live in Manhattan,
ask a friend to tape it for you. You'll be glad you
Good Reception !!
Submitted by: Arconic@aol.com
Our firm commitments for Lyme Aid 2001 on August 11, 2001 are as follows:
2. Marshall Dillon
3. Chris Cegel
4. Amanda Perko
5. T. Bubba - comedian
Liberty Mountain will open at 10 a.m. with craft booths setting up, and bands to start playing from noon to 8 p.m. Tickets will be on sale beginning on June 1 through www.ticketweb.com which is part of ticketron.
The next day, August 12th, is the National Convention. All is arranged to begin with a continental breakfast at 8:30 p.m. and a free buffet luncheon at Liberty Mountain near Gettysburg, PA.
I always enjoy reading Lyme Matters, but today the links seemed exceptional! The inspirational Andie site with Roma Downey was trully good. It made my day, broke up the monotony of this 24/7 illness we have.
Peace, Marypat, NJ
The information provided in this newsletter, accompanying articles, and links to other related Web sites is provided as a courtesy to our readers, and all material is intended for information, communication, and education purposes only, and is in no manner an endorsement, recommendation or approval of anyone, any product, or treatments in issues of "Lyme Matters." The information presented is not to be considered complete, nor does it contain all medical information that may be relevant, and therefore, is not intended as a substitute for seeking medical treatment and appropriate care. Please consult your doctor or medical advisor before making any treatment changes.
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