LYME DISEASE UNITED COALITION LYME AND TICK BORNE DISEASE

LYME AND TICK BORNE DISEASE
NEWS AND VIEWS – APRIL 2010
LYME DISEASE UNITED COALITION
PO Box 86
Story City, IA 50248
(515)432-3628
Fax: (888) 746-3810
E-mail us at:
[email protected]
[email protected]
Affiliates:
Lyme disease medical education:
Lyme Disease Association of Iowa
Minnesota Lymefighter’s Advocacy
Nebraska LDUC
Ohio LDUC
South Dakota LDUC
www.ilads.org
www.jemsekspecialty.com
www.waisbrenclinic.com
www.drerniemurakami.com
www.personalconsult.com
Nevada LDUC
Indiana LDUC
Kansas Lymefighters, Inc.
www.thehealingartspartnership.com
www.igenex.com
Oklahoma LDUC
www.lymeiniowa.org
www.lymefighters.org
www.kansaslymefighters.com
Washington (State) LDUC
North Dakota LDUC
In the Lyme Light, MN LDUC
Welcome to the LDUC--The LDUC is rapidly
growing. We are linking
independent Lyme
disease groups with an
ideology we try to follow
– that is, to advocate for the Lyme patient and educate
doctors – with the ultimate goal of sending them to ILADS
Preceptorship Training. Our organization is based on the
respect and protection of the Lyme patient. We attain to go
to all limits to inform you of the latest trends in Lyme disease
care.
This publication is attempting to be a Reader’s Digest
newsletter with original articles, or reprinted articles of
interest to patients with Ld. We encourage you to review the
ads or Resource Guide at the back. It is forever being
updated. All products or references are thoroughly
investigated before we pass them on to you. This is your
forum. Please send items of interest, or articles you have
written.
PS: Please note our Friends of the LDUC Section in the back of
our newsletter to have a support connection in your state.
Happy Spring…Finally!
Judith Weeg, President
Tracie Schissel, Vice President
Call to Register for a Telephone Conference
Spouses of Ld Patients Support Group (515) 432-3628
ABBREVIATIONS IN NEWSLETTER:
•
•
•
•
•
LLMD = Lyme Literate Medical Doctor
ND = Naturopathic Doctor
ILADS = The International Lyme & Associated
Disease Society
Ld = Lyme disease
MD = Medical Doctor
Psychiatric medical education:
www.thehumansideoflyme.net
www.mentalhealthandillness.com
ALERT: IF YOU ARE ON VITAMIN D SUPPLEMENTS, HAVE YOUR
PHYSICIAN DO PERIODIC BLOOD TESTS TO MAKE SURE THAT YOU
ARE ON THE CORRECT DOSAGE. VITAMIN D IS NOT WATER
SOLUBLE, AND CAN BUILD UP TO TOXIC LEVELS IN THE BODY.
HOWEVER, MOST LYME DISEASE PATIENTS ARE LACKING IN
VITAMIN D, WHICH IS VERY NECESSARY TO THE HUMAN BODY.
CHECK WITH YOUR LLMD ON THE CORRECT VITAMIN D DOSAGE.
Please send cards, call, or visit our dear Amy Vanderkamp –
in Hospice in a nursing home in Des Moines, IA. (Donations
can be sent for her care, also to address below)
Amy Vanderkamp
Younkers Rehab Center – Room 811
1200 Pleasant Street
Des Moines, IA 50309
Phone: (515) 710-2130
E-Mail: [email protected]
We send our love and prayers to Amy – a 30 year-old with Lyme
disease that has severely attacked her heart, and a mother of an 8
year-old.
TO HONOR DR. LIDA MATTMAN,
MICROBIOLOGIST by Judith Weeg
My dear friend, Dr. H. C. Ellinghausen, of
Annapolis, MD, recently came across the
obituary of Dr. Lida Mattman – our hero.
Many of the readers of this article were
fortunate enough to meet this innovative
pioneer. She has helped the Lyme community, with her brilliant
book, Cell Wall Deficient Forms (available at most libraries.) I call
this text the “Bible” of the basics in understanding the science
behind Lyme disease. May our hero, Dr. Mattman, rest in peace.
Please read on for the obituary from Microbe Magazine:
“Deceased Member - Lida Holmes Mattman, professor
of microbiology at Wayne State University, for more than 30 years,
passed away on 6 August 2008. She was 96. She had also held
research positions at the universities of Iowa and Pennsylvania and
served as an instructor at the Harvard School of Public Health and as
director of clinical laboratories for the United Nations Relief and
Rehabilitation Commission.
Born in Denver, she completed an undergraduate degree in
microbiology and a Master's degree in virology at the University of
Kansas. She received her Ph.D. in immunology from Yale University
in 1940.
Although her research interests were varied, her most significant
accomplishments were in the area of cell wall-deficient bacteria or Lforms. She is credited with enhancing laboratory techniques to
culture these organisms from a variety of clinical sources, even
developing a method for growing them directly on slides. In
conjunction with many clinical colleagues, including her physicianhusband, Paul E. Mattman, she identified these variant forms in a
number of infectious disease states, including tuberculosis and Lyme
disease.
Since most antibiotics are not effective against these cell wall
variants, Mattman and others postulated that they accounted for
the persistent symptoms seen in patients even after prolonged antibacterial therapy. She also found these aberrant bacterial forms in
patients with other, presumably noninfectious diseases, such as
Parkinson's disease and sarcoidosis. Although the role that cell walldeficient microorganisms may play in these various clinical
conditions remains unclear, Mattman's work has been instrumental
in raising our awareness of these variant forms and their potential
role in disease.
Mattman was also a well-regarded instructor for both
undergraduate and graduate students. Her courses in diagnostic
bacteriology and immunology were taken by nurses, physicians-tobe, and others who would find a career in biomedicine. She was an
early practitioner of combining research with classroom and
laboratory education. She also related to her students on a personal
level, and a highlight for many who were enrolled in her courses was
dinner at her home. For her dedication and compassion as an
educator as well as her accomplishments as a researcher she
received the Wayne State University President's Award for
Outstanding Teaching and Research in 1977.
As a graduate advisor and mentor, Mattman provided support and
encouragement to a wide variety of students. Fulltime students
filled her laboratory during the day while nontraditional students,
often with full-time positions and families, populated the research
facilities until late into the night. When resources were not
otherwise available, she was known to personally fund research
projects for her students.
Mattman served as President of the Michigan Branch of ASM and as
chair of the Medical Division of the Michigan Academy of Sciences.
In 2005, Mattman was inducted into the Michigan Women's Hall of
Fame. A tireless investigator, she continued her work long after
retiring from her professorship in 1982. She was working on the
third edition of her book Cell Wall Deficient Forms-Stealth Pathogens
until shortly before her death.
Friends, colleagues, and former students will remember her as a
supportive, compassionate, and tireless individual. She is survived by
a daughter, a son, and five grandchildren.”
Thomas G. Pistole
Molecular, Cellular, and Biomedical Sciences
University of New Hampshire, Durham
***Reprinted from Microbe Magazine, Vol. 4, No. 6, 2009
“Under Our Skin”, Plays to a Packed Room at
Iowa State University – Ames, Iowa
Physicians, Veterinarians, and college students
attended a January showing of “Under Our Skin”
at Iowa State Memorial Union’s Sunroom.
Officiating were, Dale Lamb, Mary Lamb, and son
from Grinnell, IA and Steve Barker from Ames, IA.
A pointed question and answer period followed
the event. “Under Our Skin” was a part of a Humanities series
directed by ISU – English Chair – Deb Marquardt.
The LDUC newsletter offers many suggestions in the
alternative (herbal, vitamin) care for Lyme patients.
However, the main treatment for Lyme disease is antibiotic
therapy through an LLMD. To enhance the immune system,
alternative medicines are written about in our newsletter.
We are not physicians, and offer safe, alternative healthcare
suggestions and products. We advise checking with your
LLMD physician to approve products mentioned.
TEEN BEAT by Jake
This is a column for ages 11-18 year olds –
answers come from Jake in Iowa – a 13 year-old
who has gone through a long, rough road of IV
treatments and periods in a wheelchair, to now
being active in sports. He is in remission for
Lyme disease, due to continual antibiotic
treatment, and vitamin therapy to enhance his
immune system.
Q. I am 13 years old, and I am having trouble remembering things
at school. I am so unhappy having Lyme disease, and trying to
keep up with my friends in classes. How can I stay in school, when I
am so tired, and can’t think straight? My mom wants to teach me at
home. How do we do this?
-Evan, age 13, Nebraska
A. Dear Evan: I know how hard keeping up with classmates and
school work can be; I had to miss two months of school because of
Lyme last year, but the thing that worked for me is I had the
Principal and the teachers make a 504 Plan that organized my
learning system. I got to have an online learning program called
Apex Online that I did at school and home, and I got to "audit" the
classes to keep up with my classmates. That meant I went to the
classes as I could, but didn't have to do the same homework. There
is a Children's Education Issue of Lyme Times that you can check out
for 504 Plan details and homeschooling options at
www.Lymetimes.org . It is the summer of 2006 issue, No. 45. And
as for the memory, there is not much you can do for that; you just
have to keep trying continued Lyme treatment. It will eventually get
better if you work through it.
----Best wishes, Jake
COLLEGE BEAT by Sarah
A question and answer column for college age,
(18-28 year-old), Lyme disease patients. Sarah
Endorf, age 20, is the author of several books on
Lyme disease and has been suffering from the
illness for several years. She attended college at
Northeast Community College in Nebraska
.
Q: I am a freshman at Dickinson State in North Dakota. I have just
been diagnosed with chronic Lyme disease. My doctor wants me to
have a pic line inserted, and to take IV Rocephin. Is this going to be
painful? What can I expect? I read Coping With Lyme Disease by
Denise Lang. The Herxheimer scares the living liver out of me. Help!
…Eleanor- age 18 -Dickinson North Dakota
A: Eleanor, I personally have had 4 pic lines. When they insert them
into me it was painful. What I did, was just look away. It is worse if
you look. They use a numbing medicine, but to me it didn’t work.
So I just look away and think positive thoughts. You are awake
through the whole procedure because you have to move certain
ways to get it into position. It isn’t as bad as it sounds.
You do need to know that you cannot stick a needle into a pic line.
Make sure you flush the line with a saline solution. Even if you are
on a break from IV drugs for some reason, and still have the line, it
can get clogged easily and it’s not fun when that happens. If you
have chest pains or you get a hole in the line, you need to go to the
hospital because it is VERY dangerous (not to scare you).
The Herxheimer’s are a little different for everyone. If you totally
don’t feel yourself, you need to call your doctor and they usually
take you off your IV for a couple of days. What I do is tell my
parents how I’m feeling and I keep a journal, and together with
those positive things, we determine if it is a Herx. I wish you all the
best Eleanor and remember……………Think Positive Thoughts!!!!
…Sarah Endorf
NOTE from Judith Weeg: please ask for pain medicine-like Valium,
before having a pic line placed. Make sure you have a good surgeon
or radiologist place the line. DO NOT have it done in a doctor’s
office or emergency room. You should not feel pain if you ask for
Valium ahead of time.
•
If you do not take your IV drugs for a few days, be sure to flush
your line with Heparin & Saline solution.
•
Blood clots in the line are very rare – call your doctor,
immediately, if you have a clot or infection, or go to a hospital
emergency room.
•
Drink lots of water while on IV care to aid in hydration of the
body, and good blood flow.
ASK THE DOCTOR by Dr. P.
Q: What causes seizures in Lyme patients? How do
you prevent it? What are signs to look for or ways
to stop it before it happens?
…Maggie, Ft. Collins, CO
A: Seizure disorders can be associated with the
later stages of neuropsychiatric Lyme disease. The
symptoms can be grand mal seizures, but more commonly are
partial-complex seizures. A grand mal seizure — also known as a
tonic-clonic seizure — features a loss of consciousness and violent
muscle contractions. It's the type of seizure most people picture
when they think about seizures in general. Partial –complex seizures
usually start with a simple partial seizure. Also called an aura, this
warning seizure often includes an odd feeling in the stomach or
dizziness. Then the person loses awareness and stares blankly. Most
people move their mouth, pick at the air or their clothing, or
perform other purposeless actions. Less often, people may repeat
words or phrases, laugh, scream, or cry. Some people do things
during these seizures that can be dangerous or embarrassing, such
as walking into traffic or taking their clothes off. These people need
to take precautions in advance.
If the early symptoms of neuropsychiatric Lyme disease are
identified, and the patient is appropriately treated, symptom
escalation does not usually progress to the level of seizures.
Symptoms of neuropsychiatric Lyme disease to be aware of early on
are:
Sleep Disturbances
Numbness in hands and feet
Cognitive overload
Memory Loss
Brain Fog
Light and Sound Sensitivity
Depression
Irritability
Aggression
The symptom of seizure could also be compatible with Babesiosis,
since Babesiosis is noted to have similarities to Malaria. Cerebral
Malaria has been extensively studied, and is associated with a
number of neuropsychological symptoms including, depression,
memory loss, irritability, and seizures. I feel that any patient with a
new onset of seizure should be screened for tick-borne disease. In
patients with a diagnosis of Lyme disease, who develops seizures,
the patient should be considered for IV treatment. Additional workup including MRI of the brain, SPECT Scan of the brain, and
laboratory studies for co-infection (including an Eosinophil Cationic
Protein for Babesia), and checking for vitamin deficiencies should be
performed. Treatment with an anti-convulsant can be initiated for a
period of time, until the underlying disease is treated. Medications
such as Depakote and Lamictal, which also have some mood
stabilizing effects, are often a good choice, since irritability and
aggression are also classically seen in neuropsychiatric Lyme disease.
Please discuss your symptoms with a qualified LLMD before starting
treatment.
…by Dr. P., ILADS Doctor, Chicago IL & Grinnell IA
INFLAMMATION & CENTRAL NERVOUS SYSTEMS OF LD
“A new paper 'Inflammation and Central Nervous System Lyme
disease' has just been published in the journal Neurobiology of
Disease authored by Dr. Brian Fallon, Director of the Columbia Lyme
and Tick-Borne Diseases Research Center, Dr. David Hardesty, Lyme
Center Neurologist. and fellows Elizabeth Levin and Pernilla
Schweitzer.
Neurologic manifestations of Lyme disease occur in 10-15% of
individuals with untreated Lyme. This paper discusses the symptoms
of neurologic Lyme and reviews experimental studies that provide
insight into the possible mechanisms of inflammation following
Borrelia infection and contributing risk factors.
A fascinating and potentially very important study has recently come
out in the journal, Science. The study reports on the discovery that
68% of patients with Chronic Fatigue Syndrome (CFS) carry the
XMRV virus as compared to 3.7% of those without CFS. Further work
reported in the New York Times indicates that the virus has been
found in 98% of patients with CFS. The discovery of this retrovirus, if
confirmed by other research groups, suggests that this virus is either
the cause or an important secondary factor in CFS.
This finding has implications for Lyme research as it is possible that
patients who carry this virus when co-infected with Lyme go on to
have persistent symptoms because: a) of activation of the latent
virus; b) infection with Lyme or another tick-borne disease lowers the
immune surveillance making the individual more susceptible to
"catch" the virus; or c) the presence of the virus and the spirochete
together act synergistically to induce an array of illness symptoms or
to prevent eradication or control of either organism.
In any case, given that the symptoms of CFS are so similar to the
symptoms of patients with chronic persistent Lyme symptoms,
especially shared problems with fatigue and cognition, research in
this area may shed important light on the mechanisms underlying
the perpetuation of chronic symptoms. In terms of treatment, if this
virus is thought to be causal, then retroviral treatments that
are used for treating HIV may be very helpful for patients with
chronic persistent symptoms.”
…reprinted from
http://vesta.cumc.columbia.edu/lymedisease/news/user/featNews.p
hp?sel=newsFeat
Book Review
AMYOTROPHIC LATERAL SCLEROSIS AND MULTIPLE SCLEROSIS
WITH ANTIBODIES)
****Answers by renowned, Dr. Burton Waisbren, Sr.; M.D.,
F.A.C.P., F.I.D.S.A.
Cell Wall Deficient Forms Stealth Pathogens
By Dr. Lida H. Mattman
Cell Wall Deficient Forms is meant to be a university text book. A
lay-Lyme disease reader should read this book in small doses. It is
the most definitive text, pointing out the connection of all
autoimmune illnesses to the original source of the pathogen
Spirochete. Have the courage to wander the streets of this book’s
pages. Cell Wall clearly shows the connection to Lyme disease, MS,
Parkinson’s, ALS, and Leptospiria. See microscope slides of B.
burgdorferi (Lyme disease):
MN Board of Medical Practice Votes to Abstain from
Investigating Lyme Doctors
The Minnesota Board of Medical Practice (MBMP) voted 8-6 to
adopt a moratorium on investigating physicians who treat chronic
Lyme with long-term antibiotics. Stating that the science for
diagnosis and treatment of chronic Lyme is unsettled, the Board
agreed to a 5-year period in which to allow science to answer
unresolved questions.
The resolution was posted on the MBMP website on Friday and the
Board will further “educate its staff, medical coordinators, and
members regarding this voluntary action.”
Plate 18
Plate 21
Plate 22
Plate 23
RENOWNED DOCTOR ANSWERS
QUESTIONS FOR AN LDUC PATIENT…
Dr. Burton Waisbren, Sr.
www.waisbrenclinic.com
Q: Dr. Waisbren, can Lyme disease (Ld)
transfer into Amyotrophic Lateral Sclerosis
(ALS)?
…from Anonymous Patient, Texas
A: I noted a relationship between ALS and Lyme disease in 1987.
Lyme disease has been confirmed to lead to ALS in certain cases. I
refer to an article in LANCET, I co-authored, regarding this subject:
Lancet. 1987 Aug 8;2(8554):332-3.- Article: Borrelia burgdorferi
Antibodies and Amyotrophic Lateral Sclerosis by B.A. Waisbren, N.
Cashman, R.F. Schell, R. Johnson. ... Rothstein has found that
Cephtriaxone (Rocephin), an antibiotic used for Lyme disease excites
an enzyme that controls glutamate levels in cells, and had a double
blind multicenter study to see if this drug helps ALS (Brower, New
England Journal of Medicine – 352:376-1378)
A more detailed discussion of this subject, with references, is
available at the Waisbren Clinic website… www.waibrenclinic.com,
or a reference paper can be mailed to you upon request. (Contact
LDUC, P.O. Box 465, Boone, IA 50036 or email [email protected]
for a copy of Dr. Waisbren’s paper titled: TREATMENT OF
AMYOTROPHIC LATERAL SCLEROSIS AND MULTIPLE SCLEROSIS
WITH ANTIBODIES)
Q: Dr. Waisbren: Can Lyme disease transfer into Multiple Sclerosis
(MS)?
… From Anonymous, Texas
A: The observation that Lyme disease (Ld) is, in some instances,
associated with MS is well-documented in the literature in my
website for the Waisbren Clinic – www.waibrenclinic.com. Please
refer to articles by the following:
•
LANA – PEIXOTO MA – “MULTIPLE Sclerosis and Positive
Lyme Serology,” ARQ NEURO-PSIQUIATR. 1994 Dec;
52(4):566-71
•
Garcia Monco JC, Coleman JL, Benach JL – “ANTIBODIES
TO MYELIN BASIC PROTEIN IN LYME DISEASE” Journal of
Infectious Disease, 1988, Sept.; 158(3):667-8.
A more detailed discussion of this subject, with references, is
available at the Waisbren Clinic website… www.waibrenclinic.com,
or a reference paper can be mailed to you upon request. (Contact
LDUC, P.O. Box 465, Boone, IA 50036 or email [email protected]
for a copy of Dr. Waisbren’s paper titled: TREATMENT OF
The effort to protect physicians who treat Lyme disease with longterm antibiotics was spearheaded by the Minnesota Lyme Action
Support Group (MLASG) and Dr. Elizabeth Maloney. Minnesota state
senators John Marty and Ray Vandeveer, and state representatives
John Ward and Bob Dettmer took up the cause, introducing
legislation at the start of the 2010 legislative session which would
have limited the medical board’s authority to investigate complaints
related to the treatment of Lyme disease. As the bills advanced,
behind the scenes negotiations produced an agreement with the
MBMP which formed the basis of the MBMP’s resolution; this
agreement allowed the legislation to be tabled.
Studies have shown that the bacterial agent of Lyme disease can
survive the one-month treatment regimen commonly recommended
for the treatment of the infection. Patients with chronic Lyme have
difficulty finding doctors who will treat the infection more
aggressively, as many physicians fear being investigated by the
MBMP should they treat long-term. Doctors in other states have
faced investigations; some have had their license revoked. With few
doctors willing to take on Lyme patients, many have had to travel
out of state for appropriate medical care.
With the MBMP resolution in place, doctors and patients who
decide that long-term antibiotic therapy is appropriate can now
choose this course of action without fear of reprisal. In 2008,
th
Minnesota ranked 8 in the nation, with 1,282 reported cases of
Lyme disease. The Centers for Disease Control and Prevention
estimates this number is 10 times greater, due to the underreporting of known cases.
MLASG believes this resolution is the first step to increasing the
number of Minnesota physicians willing to become better-educated
in treating the most common vector-borne disease in the country.
MLASG promotes educational activities for the public and healthcare professionals about Lyme disease prevention, diagnosis and
treatment.
"Physician's Roundtable" Conference
April 30 - May 2 St. Louis, MO
This conference is for medical professionals only. It is being
sponsored by Sue Vogan's Peer Observations magazine, in
cooperation with the Illinois Lyme Disease Network. The cost is $350
for doctors, less for medical students. This unique Gordon-style
conference includes a lively round table discussion following the
day’s presentations and finishes the day with entertainment of the
highest quality. This year’s conference is dedicated to the late Dr. Ed
Masters. Dr. Masters’ family will be present at the conference. The
conference is sponsored by Peer Observations Magazine and the
Illinois Lyme Disease Network. The Illinois Lyme Disease Network is
a support group that serves southern Illinois and surrounding areas,
website: www.illinoislyme.com. The website has a tribute to Dr.
Masters. The Westin Hotel is 811 Spruce Street, St. Louis, MO
63102; phone 314-621-2000. For hotel reservations, call 1-866-7168137.
PRESENTATIONS:
Opening – Byron Nease, Phantom of the Opera Broadway star,
author, and HIV survivor
Dr. Tim O’Shea-Childhood Immunology and the New Boutique
Epidemics: Vaccination Is Not Immunization
Leo Shea III, Ph.D.- Neuropsychological Effects of Lyme Disease:
Impact on the Patient, Family, Academic and Work Life
Ahmed Kilani, Ph.D.- Tick Borne Illness Project
Dr. Tim O’Shea- Nutrition and Detox at the Cellular Level: The New
Human Genome
Dr. Warren Levin- Candida as a Cause of Mental Illness
Roundtable discussion
Entertainment: U. of I. a cappella group – The Girls Next Door
Dr. Ernie Murakami-The comparison results of one, two, and three
months of intravenous antibiotics for the treatment of third stage
Lyme disease
Dr. Jeff Wulfman-The Parasite Paradigm: The complex web of Lyme
Borreliosis and chronic infections
Fred vom Saal, Ph.D.-2008 FDA risk assessment for the estrogenic
chemical in plastic, bisphenol A: Why peer-reviewed replicated
research was ignored by the FDA and the FDA science rejected the
report
Dr. Judith Miklossy- new Alzheimer’s research
Dr. Renee Tocco- BioNutritional Care for Autism
Roundtable discussion
Entertainment: Byron Nease – Phantom of the Opera star
Kerry Clark, Ph.D.-Detection of Lyme Borrelia DNA in human
patients in the United States
Jerry Leonard-How Modern Medicine Is Being Subverted Through
“Treatment Guidelines”
Dr. Warren Levin-Candida as a Complication of Lyme Disease That
Prevents Recovery
Dr. Rodger Murphree-Treating and Beating Fibromyalgia
The Lyme Association of Greater Kansas City is not participating in
this event. ***Reprinted from 2/18/2010 Prime Time Lyme Newsletter
Lyme Awareness Rally Tues., April 6
Jefferson City, MO
“This
event will be held from 10 A.M. to 2 or 3 P.M. in the
Missouri State Capitol building. It is being organized by
Laurice Stevens, leader of the Missouri Tick Illness Coalition
that meets in Jefferson City. Details about this event will be in
a future issue of Prime Time Lyme.” ***Reprinted from 2/18/2010
Prime Time Lyme Newsletter
XMRV Virus Testing
“The
vast majority of people with chronic fatigue syndrome
have been testing positive for the XMRV virus, and many
chronic Lyme patients want to know whether they may also
have the virus. Because of huge demand, there is a 6 to 8
week wait for the test kits, and the lab is currently only sending
doctors a limited number of kits per month. You may have to
wait awhile to be tested. VIP Diagnostic Laboratory is doing
the testing, website www.vipdx.com.” ***Reprinted from 2/18/2010
Prime Time Lyme Newsletter
We thought the following would be of interest to Lyme patients:
reprinted from 2/18/2010 Prime Time Lyme Newsletter – authored
by Kathy White – from a Lyme meeting in Kansas City.
“Cathy Ustic told us she and her husband used to have a natural
foods restaurant and market in Prairie Village, KS. Her son Dan now
runs The Manna Nutrition Store, but she continues to work there.
They seek to provide high quality products at the lowest possible
cost. They have frequent sales. The store is located just east of Nall,
at 5235 W. 95th Street, Overland Park, KS 66207, phone 913-3816604, or toll-free 1-877-848-3472. Products are also sold at their
website, www.mannanutrition.com.
Mrs. Ustic brought some supplements from her store to show us.
She said the most important thing is to take a multi-vitamin. Taking
additional calcium is also important. She said 5HTP boosts serotonin
and helps people feel better. B complex is good for energy. She has
been taking the Manna Nutrition brand Co-enzyme B Complex for
years for energy. It by-passes the liver and gets absorbed into the
bloodstream. Vitamin D boosts the immune system. She
recommends the Manna Nutrition brand. She told us many people
with fibromyalgia have been getting diagnosed with a vitamin D
deficiency after getting tested for it.
Manna Nutrition sells the Nutribiotic brand of grapefruit seed
extract for the immune system. They have it in tablet, capsule, and
liquid form. She told us the La Leche League recommends grapefruit
seed extract for nursing mothers instead of antibiotics. Olive leaf
extract is also good for the immune system. Mrs. Ustic switches
around to different products for her immune system so she won't
get used to any one product.
She told us fish oil is good for the health. It reduces inflammation,
improves concentration, and is good for the heart. (Secretary's
comment: it must not be taken with Mepron or Malarone.)
Mrs. Ustic had a hand-out about celadrin, which is used for joints.
Manna Nutrition sells the Bluebonnet brand, which combines
celadrin with glucosamine and MSM for joint health.”
More about Celadrin
By Kathy White
“You can learn more about celadrin on the Internet. Celadrin is a
natural product made of esterified oils. It is sold as oral softgels and
as a topical cream. It can take up to 30 days to notice results from
the softgels. In a double blind, placebo controlled, peer-reviewed,
published study, Celadrin was proven to lubricate cell membranes,
cushion joints, and promote comfortable joint flexibility. It works by
increasing lubrication and cell membrane fluidity. It reduces
inflammation and pain in the joints, but it does not repair damage to
joints or cartilage. It has no known side effects and is considered
safe for short-term use, but its safety for long-term use has not yet
been studied.” ***Reprinted from 2/18/2010 Prime Time Lyme Newsletter
Check out YouTube – Dr. Oz to Oprah and Michael J. Fox: “The
stem cell debate.” Click here: YouTube-Dr. Oz to Oprah and
Michael Jo Fox “The stem cell debate is dead.”
http://www.youtube.com/watch?v-IDFJOzu9SyM
Actress Diane Kruger Worries About Brother with Lyme: She
tells Britain’s Marie Claire magazine, “He’s really ill right now. He
got Lyme disease. He got bitten three or four years ago and it
attacked his nervous system.”
http://www.contactmusic.com/news.nsf/story...brother_1135784
“How To: Boost Your Brainpower
If you are tired of eating salmon and doing crossword puzzles to
keep your mind sharp, change it up:
>>STIMULATE COORDINATION that wouldn’t normally be used, says
Laura Fay, CEO of HAPPYneuron, Inc… (www.Happy-neuron.com ), a
brain fitness program site. Brush your teeth or eat a bowl of cereal
with the opposite hand.
>>LEARN A NEW HOBBY that puts fine motor skills to work. Take up
a musical instrument, try painting, or dust off that sewing machine,
says Robert Bender, M.D., medical director of the Johnny Orr
Memory Center and Healthy Aging Inst. in Des Moines, Iowa.
>>PLAY YOUR OWN GAME OF MEMORY – When you enter a room,
pick 5 items and try to remember where they’re located. Think
that’s easy? Try to remember them two hours later, suggests Fay.
Anne Marie Conte” ***reprinted from Women Day – June 16, 2009
DOCTORS AND PATIENTS CALL FOR CHANGE IN LYME
DISEASE DIAGNOSIS:
Lyme disease is under-diagnosed, but now, doctors and patients are
speaking up about a disease that some are calling the next pandemic
Some doctors say there is an under-recognized rise in the cases of
Lyme disease in the U.S. If caught early, the disease is treatable, but
in many cases, patients don't get the characteristic rash after a bite.
Now, patients and doctors are speaking up about a disease that
some are calling the next pandemic. Ten years ago, Julie
Hutchingson came down with a mysterious set of symptoms,
including depression, fatigue, insomnia, vertigo, and tendinitis.
The busy mom went from doctor to doctor, who suggested it could
be over 10 different conditions. “A couple of doctors mentioned HIV,
possibly AIDS," says Julie. After seven years, she finally got a
definitive diagnosis -- Lyme disease. The CDC reports about 20,000
cases of Lyme disease have occurred in the U.S. in recent years, but
says actual numbers could be up to 10-times that amount.
Some doctors say the root of the under-reporting lies in the blood
test. “The CDC recognizes three strains right now, but there might
be 300 strains,” says Dr. Michael Cichon, professor at the University
of South Florida. Doctors also disagree on treatment. Dr. Cichon
uses I-V antibiotic therapy for four months or longer on some of his
patients. The Infectious Diseases Society of America says the longterm treatment carries risks, like antibiotic resistance and infection
and recommends a shorter course of less than two months, based
on three NIH studies. “All three studies indicated that prolonging
antibiotic treatment after 60 days does not seem to have any further
effect," says David Balkwill, PhD, and professor of microbiology at
UCF College of Medicine.
"The Infectious Diseases Society needs to stop their guidelines,
make them just recommendations,” says Dr. Cichon. One thing
most agree on is that change needs to happen.
Julie underwent long-term antibiotic therapy. She hopes to save
others from the unanswered questions that troubled her for years.
Besides a rash at the site of a tick bite, symptoms to watch out for
include joint pain that migrates from one joint to another, fever,
chills, fatigue and body aches.
To better understand how Lyme disease spreads, the National
Science Foundation recently awarded a four-year; $2.5 million grant
to scientists at five U.S. universities.
Gray Television, Inc. – Maureen McFadden, reporter
NAUSEA NO MORE by Nora Simmons
5 Herbal Remedies to help Settle Your Stomach
“When you feel like you’re going to throw up, you’ll try anything
to make the sensation go away. But conventional cures like PeptoBismol or prescription anti nausea medications carry side effects like
constipation, headache, and muscle spasms. Moreover, these cures
don’t always treat the cause, says Jennifer Crain, LAc, an Austin,
Texas – based holistic pediatrics specialist and traditional Chinese
medicine (TCM) practitioner.
There are many reasons you might feel sick: food poisoning, food
intolerance, hangover, or even motion sickness From the
perspective of TCM, digestive issues – especially nausea – are
connected to imbalances in the spleen and stomach, says Guillaume
Vincent, LAc, who practices acupuncture in Telluride, Colorado. To
treat nausea, you need to bring harmony and health back to these
critical organs. How? By taking in warm, easy-to-digest foods, along
with balancing herbs and plenty of water. Here are a few of the
most effective herbal nausea remedies, no matter what the cause.
Gingerroot: Ginger (called sheng jiang in TCM) stimulates the body
to produce fluid that aid digestion, and it has sweet, warm
characteristics, which-according to TCM-fortify the spleen and
stomach, quelling nausea, explains Vincent. Steep, up to 1 ½
teaspoons dried ginger root, or a couple of slices of fresh ginger, in 8
ounces of hot (not boiling) water for 5 to 10 minutes, and drink 1 to
3 cups a day until symptoms subside.
Cang zhu: Also, known as atractylodes rhizome, this herb reduces
nausea, vomiting, and bloating, while also increasing appetite. Cang
zhu has acrid, bitter, and warm properties that reduce digestive
stagnation and strengthen the digestive organs to help you feel
better fast, explains Chanelle MacNab, LAc, who also practices in
Telluride. Get cang zhu at your natural pharmacy or from your TCM
practitioner. Make tea (as described for ginger root) and drink 1 to 2
cups a day until you’re back to normal.
Cardamom seeds: When crushed, these flavorful seeds (called sha
ren in TCM) emit oils that help restore balance to the digestive tract
and provide gentle relief from nausea, says Crain. To ensure the oil
is fresh, Crain recommends buying whole seeds and grinding as
needed. Steep 1 teaspoon of crushed seeds in hot water for no
more than 5 minutes, and drink up to 3 cups a day.
Chen pi: Known more commonly as dried tangerine or Mandarin
Orange peel, Chen pi offers a simple and tasty way to the ease
stomach upset. “Chen pi treats disharmony and stagnation in the
digestive tract by gently increasing downward contractions of the
smooth muscle in the intestines,” explains Crain. This helps keep
food moving down and out rather than up and out. Plus, you’ll get a
healthy dose of vitamins C. For quick relief, drink a tea of 1 ½
tablespoons of dried, organic Mandarin orange peel steeped in hot
water for 10 minutes. Quick tip: Stock up on ripe organic oranges
when they’re in season, and dry the peels in the sun or oven.
Ginseng root: This herb treats the kind of nausea that leaves you
feeling depleted (think stomach virus), says Vincent. It helps relieve
nausea and stimulate appetite. It also restores energy, or qi, which
is weak when you’re sick. Steep 1 teaspoon powdered ginseng root
in warm water, and drink 1 to 3 cups a day until symptoms subside.
Ginseng is not recommended for children.” **reprinted from
NaturalSolutionsMag.com April 2010
A QUILT FOR LYME DISEASE
Thirty-three year old Nani Lauriano Luculescu is
a fabric artist with a vision. She wants to create
a quilt—perhaps a series of quilts—to give the
world a glimpse of what people with Lyme
disease go through every day. And she wants
YOU to help her do it.
Nani is asking people to send digital photos of
themselves living their lives with Lyme. For some people, the photos
might show all your medications lined up in a row. Or getting
hooked up to an IV. “Anything they deem Lyme-related,” Nani says.
“They can be as creative as they want. I want to see what they are
going through and what their daily life is like.”
How about showing the odometer of your car, depicting how many
miles you drive to your Lyme doctor? Or the screen of your
computer, open to your on-line Lyme support group? Your stack of
Lyme Times? A package of gluten-free crackers? Maybe that pile of
laundry that’s accumulating because you just don’t feel up to
dealing with it.
Nani began a crash course in Lyme when her dad apparently
became infected two years ago on a fishing trip to Mammoth Lake,
California. Even though he told his doctor that he’d received several
insect bites, Nani says, “His doctor dismissed his concerns and didn’t
even test him for Lyme.”
Her dad’s condition deteriorated rapidly and he was soon diagnosed
with ALS. Eventually he received a Lyme diagnosis, and showed
improvement on IV Rocephin. Until his insurance company put a
stop to that.
“The suffering that a Lyme patient goes through is incredibly painful
and consuming,” Nani notes. “I see how my dad struggles to rise
from a chair and walk just a few feet. He can no longer work, help
around the house or care for his beloved dog, Bo….He had a stair lift
installed, so he can make it upstairs to his room safely. He winces in
pain with each step he takes. He spends hundreds & thousands of
dollars on supplements, medications & treatments intended to
improve his health.”
Her dad’s struggle inspired the mother of two toddlers to do her
own research about Lyme. She joined yahoo groups and “was blown
away at the number of people who had the same sad story as my
dad.”
She watched last summer’s IDSA Lyme hearing, viewed Under Our
Skin, and started writing about Lyme on Facebook. Then she got the
idea of making quilts about Lyme disease. (She already quilts and
makes cloth handbags and wallets. You can view some of her work
here.) She plans to transfer the Lyme photos to fabric, and stitch
them into a quilted image of life in the Lyme lane.
Won’t you help her in this effort?
You can email your photos to [email protected]. Include
contact information, in case she has questions about your photos.
Members of Facebook can post the pictures directly on her wall.
You are also invited to mail small Lyme-related objects which can be
sewn onto the quilt as well. (Think the size of a pill bottle—not the
size of a wheelchair or walker!) Items can be sent to:
Nani Luculescu
P.O. Box 2404
Cypress, CA 90630
WHEN IS DELUSION NOT A DELUSION BY Ginger Savely
“Delusions of parasitosis (DOP) is a psychiatric disorder in which
patients mistakenly believe they have a skin infestation. As Koo and
Lee reported in the American Journal of Clinical Dermatology
(2001;2[5]:285-290), DOP is actually very rare, and oddly, individuals
diagnosed with it have no history of mental illness. In fact, patients
seem cognitively intact in every way while adamant that something
inside of them is causing itching and other disturbing sensations
(Dermatol Clin. 1996;14[3]:429-438). Some of the earliest patients
exhibiting these symptoms expressed belief that their symptoms
were due to a parasite. Because a known parasite could not be
identified on superficial exam, doctors assumed the patients were
delusional. A recent explosion in the diagnosis of DOP raises
suspicion that these unfortunate people may actually have had a
real, unrecognized disease all along ( J Am Acad Dermatol.
2007;56:705-706).
In 2002, Mary Leitao, a Pennsylvania mother, noticed unusual
fiber-containing lesions on the body of her 2–year-old son. Unable
to find a diagnosis, Ms. Leitao began to call the ailment Morgellons
disease (MD) after discovering a similar named condition resembling
her son’s in a 17th-century medical text by Sir
Thomas Browne. Since Ms. Leitao started the nonprofit Morgellons
Research Foundation in 2003, more than 14,000 families have
registered (www.morgellons.org).
I recently completed a descriptive study of 122 patients who had a
positive in-office examination for microscopic, subcutaneous fibers.
The top 10 symptoms specific to the patients’ skin condition and
experienced by more than 70% of the sample were: crawling
sensations under the skin; spontaneously appearing, slow-healing
lesions; hyper pigmented scars when lesions heal; intense itching;
seed-like objects coming out of the lesions; black specks coming out
of the lesions; a sensation of something trying to poke through the
skin from the inside out; “fuzz balls” on intact skin (balls of fine fuzz
that are usually only visible microscopically); fine threadlike fibers of
varying colors in lesions and intact skin; and thick, tough, translucent
fibers that are highly resistant to extraction.
When commercial laboratories examine wound biopsies of MD
patients, the fibers are usually mislabeled as textile in origin.
However, when matched to 100,000 organic and inorganic
substances in an FBI database, the fibers were unique and
incomparable. Thus far, only individuals claiming to have MD have
been observed to have these unknown fibers in their skin. (Research
scientist Randy Wymore, PhD, and colleagues presented these
findings at the 14th International Molecular Medicine TriConference in San Francisco in 2007.)
The distinguishing characteristic of MD is the presence of
microscopic subcutaneous fibers, which can be visualized with
lighted magnification. If a person complains of MD-like symptoms,
the practitioner should examine the skin thoroughly before initiating
a psychiatric referral, because the diagnosis of a delusional disorder
should not be made lightly.
The CDC began investigating MD in January 2008, but for now the
disease’s cause and cure remain a mystery. Whether or not MD
proves to be a distinct entity, its victims deserve to be taken
seriously and treated with respect. Primary-care clinicians can make
a difference to these patients through validation, reassurance, and a
commitment to help.”
***reprinted from March 2010 www.clinicaladvisor.com
LYME PATIENT SEEKS
WEBSITE DESIGN CLIENTS
EMAIL: [email protected]
FALLING THROUGH THE RABBIT HOLE OF LYME
DISEASE AND LANDING IN A NEW WORLD
…by Judith Weeg
I separate my “Real Life” from my “current-ill life.” In my real life, I
had a home on Long Island, New York; a home in Philadelphia; and a
home in the upstate mountains of New York. I went to balls, and
wore silk dresses. I traveled to unusual countries, rested at the
oceans of the world, dined in great restaurants, revered art in the
museums of the world, and laughed at the joy of life.
I fell through the rabbit hole of illness, into a new, darkened land of
Lyme disease. Gone are the trappings of the old world. The
universe that I am now in, is so juxtaposed, I ask, did I dream the
fact that my life, for 20 years, existed in the East? Reality is here, I
am ill. I wear flannels, not silk dresses. I write from a wheelchair. I
am back in my birth state of Iowa. There is no ocean. So, why am I
writing this piece? Not to entertain the reader, but to let each of
you know what to do when you fall through the “Rabbit hole.” to
land in this new, frightening place.
We created the LDA of Iowa, and the LDUC to hold your hand
through the transition. You are not alone. How do you maneuver a
these channels?
1.
You need to apply for Disibility through your Social
Security offices. Disability is a protector for the “ill”. It can
take 2 years, or longer, to receive it. The wisest path is to
find a disability attorney to help you. Disability attorneys
will ask for no money up front. When your case is won,
the attorney will usually take $5000 out of the winnings.
See back of newsletter for attorneys’ names. (Call: 800431-2804 for a list in your state).
2. Medicare will be awarded to you, in most cases, 2 years
after you receive Disability. Get part A, B, D (D covers
medicines) parts of Medicare.
3. If you have no resources and have the inability to work,
call your Dept. of Human Services to obtain assistance.
Remember, once you are on Disibility, you can apply for a
waiver program to aid you in your care.
4. In the back of this newsletter are other aids in this
transition:
•
Free air flights: if you have a limited income, to
see your doctor, some involve major airlines, and
others place you on small planes. “Go to
www.aircareall.org for a list).
•
Free drugs, if qualified by income (see back of
newsletter). Very few Lyme physicians accept
insurance, due to persecution by IDSA for
treating LD. However, several have sliding scales
for patients with very little income. Ask your
doctor’s office if he/she has such a system.
5. If you have gone through all of your funds, housing is
available for ill patients. Ask at the DHS (Dept. of Human
Services) or HUD (Housing and Urban Development) office
of your state.
6. Under Social Security Disability, Vocational Rehab, will
provide, money for computers, household aids to help
you, reimbursement for college classes, etc.
If you have questions, or need an advocate to fight for your rights as
a patient, call our offices at 515-432-3628.
You fell through, the “rabbit hole” into this new land of illness, but
you are surrounded by a community in the LDUC. We are here to
guide you, listen to you, and solve your problems. I can’t promise
you, and “Ocean” in Iowa, but I can promise that we will try to have
your needs met as an ill person, from whatever state you are located
in. We are here to “hold your hand.” In the new land of illness… to
try to have your needs and comforts met.
A FEW LYME DISEASE PATIENTS WILL DEVELOP
CANCER FROM LOWERED IMMUNE SYSTEMS – PLEASE
READ THE FOLLOWING. MEN, PLEASE HAVE REGULAR
PROSTATE EXAMS…
“BRUSHING UP ON YOUR PROSTATE KNOWLEDGE”
“The prostate is a small, crabapple-sized gland located at the base of
the bladder. The prostate’s primary purpose is to produce fluid to
carry semen and to push it through the urethra by contracting
during orgasm. But a lot can go wrong with this small gland.
Prostate cancer is second only to lung cancer in taking the lives of
American men. And, cancer notwithstanding, almost half of all men
experience age-associated enlargement of the prostate, called
benign prostatic hyperplasia (BPH), which may set in as early as age
40 and can produce a host of troubling, even debilitating urinary
symptoms. Because prostate problems are so pervasive, it’s
important to be familiar with some basic prostate terms. Here are
those you should know.
Prostate Cancer:
Hereditary prostate cancer (HPC): a form of prostate cancer that is
transmitted through families. HPC is suspected if at least two firstdegree relatives—a father or brother, for example— have or have
had prostate cancer or if prostate cancer is present in three
successive generations: grandfather, father, and son.
Localized prostate cancer: cancer that remains confined to the
prostate.
Metastatic prostate cancer: cancer that has spread beyond the
original tumor site in the prostate and into other organs and/or
bones.
Treating Prostate Cancer
Hormone therapy: a treatment for prostate cancer that prevents
prostate cancer cells from receiving androgens such as testosterone.
Some, but not all, prostate cancers are fueled by androgens.
Hormone therapy for more advanced prostate cancer involves
medical castration, in which testosterone production in the testicles
is completely cut off using drugs, or surgical castration—the removal
of the testicles.
Radiation therapy: the use of high-energy radiation waves to
destroy cancer cells. Radiation can be delivered through brachy
therapy (radioactive seeds surgically implanted into the prostate) or
external-beam radiation (a high powered x-ray beam focused on the
cancer from the outside). Proton beam therapy (PBT) is a less widely
available and more expensive form of external beam radiation that
uses highly focused radiation generated by the movement of
protons. Conformal radiation therapy (CRT) and intensity modulated
radiation therapy (IMRT) are modern delivery techniques that help
minimize collateral damage to healthy tissues during external-beam
radiation therapy.
Radical prostatectomy: the most aggressive option for treating
prostate cancer; it entails removing the entire prostate gland along
with the seminal vesicles, both organs that produce seminal fluid.
Most operations are completed through an incision in the abdomen
above the pubic bone (retropubic radical prostatectomy) or
laparoscopically with robotic assistance. Most are also nerves paring
radical prostatectomies—which refer to the anatomical surgical
technique developed by Patrick M. Walsh, M.D., professor of
urology and previous director of the James Buchanan Brady
Urological Institute at Johns Hopkins. This preserves nerves and
blood vessels responsible for urinary control and erectile function.
Watchful waiting (active surveillance): a management option in
which patients are closely monitored for the progression of cancer
but do not receive active treatments such as radical prostatectomy,
radiation, or hormone therapy. This option is typically best for older
patients with localized, low-grade cancers; these cancers aren’t
likely to become life threatening.
After treatment:
Catheter: a tube that is inserted through the urethra and into the
bladder to drain urine or to aid in a surgical treatment. All men
urinate temporarily through a catheter following radical
prostatectomy to give the urethra time to heal.
Erectile dysfunction (ED): the inability to achieve or maintain an
erection. ED is a common outcome of radical prostatectomy, but its
incidence has been greatly reduced by newer, nerve-sparing surgical
techniques.
Incontinence: the loss of urinary control. Incontinence is a
universal—but almost always temporary—outcome following radical
prostatectomy.
Screening for Cancer
Digital rectal exam (DRE): a screening procedure in which the
physician dons a lubricated glove and inserts a finger into the
rectum to check for prostate cancer. Because the prostate rests on
the outer wall of the rectum, lumps, hard areas, or enlargement of
the prostate—potential signs of cancer—may be felt through the
rectum’s inner wall.
Prostate specific antigen (PSA): a protein secreted by both benign
and cancerous cells in the prostate. The PSA test measures PSA
levels in the bloodstream. An elevated PSA may indicate prostate
cancer, but it may also be the result of benign conditions such as
benign prostatic hyperplasia (BPH) or prostatitis. PSA velocity—the
change in PSA levels over time—provides a better estimation of the
likelihood of prostate cancer than PSA alone.
Needle biopsy: a test for prostate cancer that involves insertion of a
needle through the wall of the rectum and into the prostate to
obtain a tissue sample. The needle is guided into place via
transrectal ultrasound (TRUS)—an ultrasound probe that is inserted
into the rectum during the procedure to provide a visual image of
the prostate.
What is a Gleason Score?
This method grades prostate cancer on a scale of one to five, based
on the appearance of cancer cells under the microscope. The cells of
lower-grade, less dangerous cancers appear well differentiated,
which means they look markedly similar to surrounding cells. So
they receive a lower score. Higher-grade cancers are poorly
differentiated and look substantially unlike surrounding tissue—an
indication that they are more likely to metastasize. They receive a
higher score. The two most prevalent scores in the tumor are added
together to obtain a Gleason score ranging from two (the lowest
score possible) to 10 (the highest score possible). The Gleason score
helps doctors make treatment decisions based on the likelihood the
cancer will spread. For staging, doctors use the TNM system. This
uses T numbers (T1 to T4) to describe whether the tumor is felt on
digital rectal examination. N+ indicates that the tumor has spread to
surrounding lymph nodes, while M+ indicates that it has spread to
other body parts.
When It’s Not Cancer
Benign prostatic hyperplasia (BPH) is noncancerous enlargement of
the prostate gland due to the overgrowth of prostate cells. When
the prostate enlarges, it constricts the urethra, causing symptoms
such as painful urination, a slow stream of urine, and incomplete
voiding of urine from the bladder. It’s common with advancing age
and does not increase your odds of developing prostate cancer.
Prostatitis is an inflammation of the prostate that causes urinary
symptoms similar to BPH. Infectious prostatitis is the result of an
acute or chronic bacterial infection and may be accompanied by
fever and pain in the area surrounding the prostate. It can be
treated with prescription antibiotics.
Chronic noninfectious prostatitis (also called chronic pelvic pain
syndrome) produces urinary symptoms in the absence of infection.
The cause of this prostatitis often remains a mystery. This disorder
cannot be treated with antibiotics but may respond to over-thecounter anti-inflammatories such as ibuprofen.
Treatments for BPH
Alpha-blockers: originally designed to treat hypertension, alphablockers, such as the medication tamsulosin (Flomax), relax smooth
muscle tissue in the prostate and bladder neck. This helps relieve
urinary symptoms associated with BPH.
5-alpha reductase inhibitors: medications such as finasteride
(Proscar) that are prescribed to help shrink the prostate in men with
BPH. They block the enzyme 5-alpha reductase from converting
testosterone to its more potent cousin, dihydrotestosterone (DHT)—
a major contributor to the enlargement of the prostate.
DHT also plays a role in hair loss and many men take finasteride
marketed under the brand name Propecia to prevent baldness.
Transurethral therapies: A variety of catheter-delivered, minimally
invasive therapies for treating BPH. These include:
• Transurethral resection of the prostate (TURP): an instrument
passed through the urethra removes prostate tissue. (This is the
most common therapy.)
• Transurethral microwave therapy (TUMT): directs microwave
energy at the prostate to kill excess tissue.
• Transurethral needle ablation (TUNA): low-energy radio waves
deliver heat to destroy excess tissue.
• Transurethral incision of the prostate (TUIP): a knife or laserwielding catheter makes small incisions in the prostate that take
pressure off the urethra.”
***Reprinted from Johns Hopkins newsletter – March 2010
ENDOMETRIOSIS – ASSOCIATED LYME
Journal of Obstetris & Gynaecology 2010 Feb; Vol. 30, No. 2, Pages:
184-186. By Matalliotakis IM, Cakmak H, Ziogos MD, Kalogeraki A,
Kappou D, Arici A.
“The aim of this study is to report three cases of patients with
endometriosis and infertility, and associated with Lyme disease. The
medical files of 405 women with endometriosis and 200 without
endometriosis were studied retrospectively. We report 3 cases with
endometriosis and Lyme disease. Of 405 patients with
endometriosis treated in our study over a 6-year period, 3(0.8%) had
Lyme disease. All cases presented with typical erythema migraines,
fever and fatigue. The serological findings were positive for Borrelia
burgdorferi, for 3 cases. Two out of 3 women underwent IVF-ET
procedures and one of them conceived in the first cycle without
complication during pregnancy or after childbirth recorded. We
concluded that women with endometriosis are more likely to have
chronic fatigue syndrome, systemic lupus erythematous, Sjögren's
syndrome, rheumatoid arthritis, multiple sclerosis, and other
autoimmune inflammatory and endocrine diseases. A review of the
literature confirms the uniqueness of the co-existence of Lyme
disease in women with endometriosis in these cases.”
WWW.NCBI.NLM.NIH.GOV/PBMED/20143981
“Life Extension Update – February 9, 2010 –Special
Consumer Alert! SHOULD WE BE CONCERNED?
Senator John McCain has introduced a bill that if passed will
drive up the cost of dietary supplements and restrict your access
to them. This bill seeks to give the FDA complete and arbitrary
control over what supplements you are allowed to have. I am
writing you about this and a far more important matter.
If you believe in the science of mathematics, you may have
noticed that this country is descending into financial oblivion.
There is a debate as to whether this is the fault of the private or
governmental sector.
My position is simple. If it were not for the technological
advances made possible by private enterprise, the adverse
effects of governmental ineptitude would have rendered this
nation insolvent decades ago. Said differently, if it were not for
the increases in productivity and reductions in costs made
possible by free enterprise, government waste and fraud would
have already destroyed us. By way of example, Life Extension has
approximately 300 employees today. We develop dietary
supplement formulations and make them available at lower
relative prices each year. If it were not for our private enterpriseinvented computers, it would require several thousand
employees to do the same work. That would mean higher prices
and inferior products for you, assuming we remained solvent.
Senator John McCain (and others) is proposing to squander taxdebt dollars by mandating more government waste, while
sticking the private sector with oppressive laws that will hinder
scientific advances and increase costs. The net effect will be to
take away your free access to dietary supplements.
Pharmaceutical interests are obviously behind this latest effort
to legislatively force more Americans towards expensive
prescription drugs and away from natural ways of preventing
degenerative disease.
In normal times, I would ask each of you to e-mail Congress to
demand that they refuse to co-sponsor the bill that John McCain
introduced in the Senate. But these are far from normal times.
You should instead use John McCain’s bill as an example of the
rampant tax-debt fraud being perpetrated by Washington, D.C.,
politicians and bureaucrats. Please use our convenient legislative
action center to e-mail your Senators and Representative to not
only protest against this corrupt piece of legislation, but every
government project that contributes to an impossible-to-payback federal debt.
(Note: This communication is not an attack on John McCain or
any other elected official. Many Senators would have been
deceived by pharmaceutical lobbyists as you will soon read.)
For Longer life,
William Faloon
LET CONGRESS KNOW THAT YOU DON’T WAN T THIS BILL ENACTED – GO
TO THIS LINK AND AY NO!!!
http://www.capwiz.com/lef/issues/alert/?alertid=14665781&type=CO
***reprinted from 2/9/2010 Life Extension Newsletter
Posted: Friday, Feb 05, 2010 - 10:18:51 am CST Reprinted from the Fulton Sun…
Univ. students tackle tick-borne diseases
By CHRIS WALLER - The Fulton Sun
Anyone who goes into the woods in Missouri knows just how
abundant ticks can be, but now a biology professor and three
students at William Woods University are working to make the
outdoors a little safer. Dr. Mary Spratt, along with the help of senior
biology majors Allen Chazelle, Melissa Franke and Ann DeHart, were
recently given a $750 grant from the Tri Beta National Biological
Honors Society for tick research. Specifically, Spratt and her team of
students are examining the DNA of ticks from more than 60 Missouri
counties to find out what tick-borne diseases the insects are carrying
and what areas they are prevalent in. Spratt said illnesses like Lyme
disease and Rocky Mountain spotted fever are fairly recent
discoveries and can pose serious health problems if a person is
bitten by a tick.
"This project is timely and it addresses a major health concern,"
Spratt said. "Most of these diseases have been recently discovered -they are in the category of emerging infectious disease -- and we
have a lot of ticks that carry them in Missouri."
The students use a thermal cycler, also known as a PCR machine, to
perform a process called the polymerase chain reaction, to separate
and amplify the DNA of ticks. Each student is assigned a specific
disease and examines the DNA to see if the disease exists in each
county and what the likelihood is of a tick carrying it.
Franke is in charge of testing for bacteria belonging to the genus
Borrelia, which causes Lyme disease. "We extract DNA from various
ticks and we use the PCR machine to detect if any diseases are
prevalent in their species," Franke said. "I counted the other day,
and I've found 10 out of 200 samples have Lyme disease. "The
samples come from all over Missouri, so once we get the tick, we
take them into our lab and extract the DNA, and we go through a
series of tests to see what they might be carrying."
Spratt was named William Woods' first Cox Distinguished Professor
in Science in 2008 and chose Franke, Chazelle and DeHart as Cox
Scholars to assist in her research of Missouri's ticks. Chazelle said
the research they are doing can provide valuable knowledge to
those who enjoy outdoor activities in the state. "It's pretty much
just public knowledge," Chazelle said. "We have a lot of outdoor
activities in Missouri. If people look at our research, they will know
what areas diseases will be more prevalent in and they will find out
what to look for if they get bit by a tick in a certain area."
While the research itself is useful, Spratt said the project was
beneficial to the students involved to help them get a better
understanding of the research process and prepare them for the
future. "The research that I do here is student-centered first of all,"
Spratt said. "It's to give students an idea of what scientific research
is about so they become almost like an apprentice or an intern.
"Science is really about discovery and testing hypotheses, and
trying out new ideas and this particular project is good for students
because they get some field-research experience." Spratt's research
is also drawing attention from the United States military. William
Woods is collaborating with the Navy Medical Research Center in
Silver Spring, Md., to try and prevent troops from becoming infected
by tick-borne illnesses. "They are providing us with encouragement
and some of the sequences for the probes that we need to do this
research," Spratt said. "There are new diseases being discovered all
the time and it is of particular interest to our military because they
infect our troops, even when they are in training camps in the
United States, so they are interested in working with us to find what
is really out there in this area." This spring, the students are required
to present their research at a regional or national meeting of Tri
Beta as a result of receiving the grant. Spratt said the grant writingprocess that all three students took part in was extremely valuable
for the budding scientists. "I think the process of them doing it was
more important than the amount of money they received," Spratt
said. "It's small compared to what we spend on research. They
learned what people have to do these days to do research and
conserving the resources we have because
things are so expensive."
Melissa Franke makes primers out of tick DNA to
help amplify the genetic material in order to search
for bacteria at the Cox Science/Language building on
the William Woods campus on Tuesday. Franke is
part of a four-person team led by Dr. Mary Spratt to document disease
causing bacteria in Missouri ticks. The group recently received a grant of
$750 by Beta Beta Beta National Biological Honor Society to help fund the
project. (Joshua Vince/FULTON SUN photo) ***Thanks to Laurice Stevens of
MO “Tick Illness Coalition”
A WORD TO THE WISE
by Lorraine Hart, Washington
Pssst, come over my friend,
Take a word to the wise
In Washington’s cool, wet clime.
The dangerous tick never dies.
Put your pants in your socks when you walk the trail,
Play in yards, Climb Mountains, or dance in green dale!
Wear lighter clothing
So you can see if one little tick
Took a ride home on thee.
Check one another when you come home at night.
Look in folds, behind ears, in your hair? Yes they might!
Maybe you’ve heard of a disease called Lyme,
And other infections that, if left for a time,
Can cripple your body and cripple your mind.
It rips apart families,
Drains our government dime.
Right here, the tick causes Lyme.
ILADS DOCTORS TAKING NEW PATIENTS
>M. G., PA – Colorado
>Dr. P., D.O. of Grinnell, Iowa (50 miles East of Des Moines) is
accepting new patients.
>Dr. R, M.D. and Dr. N., Naturopath, Seattle WA
>Dr. T.C. – Mississippi
>Dr. L., Tempe, AZ
>Dr. S.S., Howell, NJ
Call our offices (515)432-3628) to get their phone e numbers!
HERBALIST AIDS LYME PATIENTS
LadyB is an herbalist, who is completely
recovered from eight separate bouts of
Lyme over a 15 year period and has been
well for over 8 years now. What she offers
is education and empowerment, but not
diagnosis or prescribing.
Her own web site: www.ladybarbara.net
where you will find her entire tale of her
own dance with Lyme
Her page on Self-Testing:
http://www.ladybarbara.net/html/selftesting.html quite possibly the most
EMPOWERING skill you will ever learn
Her YouTube presentation on Lyme:
http://www.youtube.com/watch?v=IZjWZ
3vK1bc
Her blog at Wordpress:
http://www.ladybarbarasgarden.wordpre
ss.com
The herbal products she makes herself
and offers for sale including Teasel Root
tincture:
http://www.ladybarbara.net/html/produc
ts.html
Alternate sources for Teasel Root
tincture made from FRESH Dipsacus
sylvestris root include:
Pharmacopia Herbals in Oregon
http://www.pharmacopiaherbals.com
Jean's Greens
http://www.jeansgreens.com in New York
State
Woodland Essence
http://www.woodlandessence.com in
Cold Brook, NY
Walker Farms
http://www.walkerherbs.com/ in
Wisconsin
Judy’s Organic Herbs
www.earthmedicine.ca (Canada only)
Her series of online herbal ally classes
http://www.ladybarbara.net/html/herb_c
lasses.html
The full one-hour Intro class can be
viewed for free
Her teleseminar audio at LymeHope.com
http://www.lymehope.com/audio.html
(scroll down)
And of course, her section at
WinTheLymeWar.com
http://www.winthelymewar.com/viewfor
um.php?f=36 where you can ask specific
questions on allying with Teasel (and
yourself) in your efforts to prevail over
Lyme Disease and get your life back. Lady
Barbara's Garden www.ladybarbara.net
Spring and Summer are around the
corner. Now is the time to have a
“bug-safety kit” prepared. A safe
product for the family is BEAT-IT Bug
Spray (all natural spray). To order,
call: 1-800-219-9765
“ARE THERE ANY NON-DEET BUG
REPELLENTS THAT WORK?
Products with DEET are best at fending
off mosquitoes and ticks. If you want to
go with something plant-based, oil of
lemon eucalyptus (also called PMD) is as
effective as repellents with 10-15%
DEET. But check with your pediatrician
first: Oil of lemon eucalyptus can’t be
used on kids under 3, and just because
something is “natural” doesn’t mean it’s
safer. Skip sprays made with citronella,
geranium, basil, garlic and peppermint;
they generally don’t work that well.
Also avoid the repellent/sunscreen
combos: Sunscreen needs to be
reapplied more often than bug spray.”
Rosmaire Kelly, PhD, MPH, entomologist with
the Georgia Division of Public Health
***reprinted from Woman’s Day Magazine
June 16, 2009
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RIBBONS ACROSS AMERICA FOR
LYME DISEASE IN MAY…

“I’ve been telling people to start getting
permission from their township to place
ribbons in parks or on Town Commons
for the month of May. Last year Ribbons
Across America generated many articles
and now that it’s nationally known, I am
hoping it does the same again. I already
got permission so Sturbridge and
Brookfield MA will have “Ribbons” on all
Town common trees in both towns. I
just finished making lime green lapel
pins for the CT Rally for Dr. Jones which
was scheduled tomorrow but weather
has cancelled the event. I have lime
green ribbons on trees in front of my
home. So many have seen them and
knocked at my door for help. Now
known as the “Ribbon Lady” in the Lyme
community, is something I never could
have thought of. LOL… I’m only hoping
to get legislation so my children never
suffer as I have. “Ribbons Across
America” makes us visible and serves to
remember those who have lost their
battle with TBD.”
***By Trish Mc Cleary www.S-L-A-M.org

Isn’t this a great idea? For May –
Lyme Awareness month, let us get
permission to place green ribbons
around trees in all LDUC states!!!
Judith Weeg
A must have list of supplies for
LD patients:




Antibiotics from LLMD
To help liver function: Astragalus
(herb) and Milk Thistle (herb)
To build immune system: (herbs)
Astragalus; olive leaf extract; Larix
Peppermint Tea --to soothe queasy
stomachs
Probiotics --from a health food
store (to counteract yeast
overgrowth)
Garlic --to protect brain, liver,
heart, kidneys and to build the
immune system
Air purifiers for both sides of your
bed and for main living area – WalMart --$35 each by Holmes … to
high-end expense air purifiers
Massager wand --by Conair-- $15 at
Wal-Mart to massage body to allow
lymphatic system to eliminate
toxins
Foot Detox bath -- see catalogues
listed at end of newsletter
Rife machine -- see listing at end of
newsletter
Infrared sauna -- pricey, but aids
the illness — “heat” kills the
spirochetal activity in the body
Electric Blanket and Heating Pad -2 of the greatest aids to counteract
Herxkeimer pain
EPI-PEN (by prescription) to
counteract severe allergic reaction
LDA Co-Directors:
Judith Weeg
Melanie Barker
(515) 432-3628
[email protected]
[email protected]
Chapter Information
To contact the chapter leader of these
Lyme Disease Support Group Meetings:
DM/Urbandale
Marcia Keil (515) 279-7841
[email protected]
Cedar Rapids
Brenda Taylor (515) 432-3628
[email protected]
Grinnell
Gina Hall
(641) 236-3678 * [email protected]
Sioux City
Kenneth Harvey (712) 252-7978
[email protected]
Council Bluffs
Lisa Mott (712) 366-4501
[email protected]
Davenport, IA
Call:
Marilyn McBride (309) 372-4472
Kris Woodard (563) 320-9888
Mary Lea Peirce (309) 797-4498
Bremer County, IA
Kris Brunkhorst (319) 352-0065
[email protected]
Brainerd, MN
Tracie Schissel (218) 829-5963
[email protected]
Hutchinson, MN
Jackie Penke (320) 234-3666
[email protected]
Lawrence, KS
Peggy Blumhagen (785) 840-9387
[email protected]
Las Vegas, NV
Susan Ward (702) 515-1488
[email protected]
Kitsap Lyme Group (WA)
Anna & Loraine Hart
(253) 307-4637
[email protected]
http://www.gateline.com/121/story/3221
.html
http://keypennews.com/Feb09/LymeDise
ase.htm
http://www.kuow.org/program.php?id=1
6085
http://underourskin.com/blog/?p=160
Seattle Lyme Group (WA)
Andrea Taubman
(206) 669-3146 [email protected]
The WA LDUC’s Online Support Group
http://health.groups.yahoo.com/group/W
ALDUC-Support
Norfolk, NE
Charlotte Endorf (402) 371-3701
[email protected]
Tulsa, OK– St. Louis, MO - Omaha, NECall our offices (515) 432-3628
CHAPTER MEETING DATES:
Grinnell Chapter
Location: United Methodist Church –
Grinnell, IA
Dates: Every last Thursday of the month.
Time: 7-9 pm
Topic: Open discussion
A free will offering will be taken
Sioux City Chapter
Location: St. Luke’s Hospital in Sioux
City—Auditorium
Dates: No scheduled meetings
Des Moines Chapter
Location: Urbandale Public Library
Corner of Douglas and 86 Street
West Des Moines/Urbandale
Conference Room
Dates:
Saturday, April 24-130-4:30 PM
Meeting Room A.
Tuesday, May 18-630-8:30 PM
Conference Room
Wednesday, June 9-130-4:30 PM
Conference Room
Topic: To be Announced
A free will offering will be taken
Cedar Rapids Chapter
Location: Marion Public Library,
Marion, IA — Meeting Room A
Dates: TBA
Time: 6:00 pm – 8:45 pm
Topic: Open discussion
Council Bluffs/Omaha Chapter
Location: Fire Station #4,
2111 Greenview Dr.
Dates: Tuesday – TBA
Time: 7:00 pm – 9:00 pm
Topic: To be announced
A free will offering will be taken
Davenport Chapter
Location: Davenport Public Library
Main Street Davenport, IA
Dates: Third Saturday of the month
Time: 2:00 p.m. – 4:00 p.m.
Topic: To be announced
A free will offering will be taken
Bremer County, Iowa
Lyme and Hormone Difficulties Special
Interest Group
Location: Trinity United Methodist
1400 West Bremer Ave.
Waverly, IA
Date: Sunday – April 25 2PM
May date TBA – call first
June date TBA – call first
Time: 6:30 p.m.
Topic: Guest speakers; Public meeting
Directions: Hwy 218 West to Hwy 3/or,
Bremer Avenue -Minnesota Lymefighters Advocacy
Location: The Brainerd Public Library
416 South 5th Street
Brainerd, MN
Date: Tuesday - TBA
Time: 6:00 p.m. – 10: p.m.
Topic: Open Forum
In the Lymelight, MN LDUC
Location: Contact: Jackie Penke (320)
234-3666 for location
Date: Third Sunday of Every Month
Time: 6:30 p.m.
Topic: Varied Forum
Nebraska LDUC
Location: Lifelong Learning Center at
North East Community College
801 E. Benjamin Ave, Norfolk, NE
(Go towards Mississippi River when you
get downtown *** check the computer
kiosk in the hall for the proper room.)
Date: 4th Tuesday of each month
Time: 7 p.m.
Topic: Open discussion
Nevada LDUC- Las Vegas
Location: Mountainview Hospital
Dates: TBA
Time: 6:00 pm – 7:30 pm
Topic: Open discussion
Contact: Susan Ward for more info:
[email protected]
Or call: (702) 515-1488
Seattle Lyme Group
Andrea Taubman (206) 669-3146
[email protected]
Location: Andrea’s Cabana – NE 140th
Street – Seattle, WA
Date: Every 1st Saturday of the Month
Time: 3-5 p.m.
Topic: Open
Note: All meetings are scent-free (no
perfumes)
Use of sauna and hot tub offered
Kansas LDUC—Lawrence
For on-line support groups go to
[email protected]
Or contact Peggy Blumhagen at
(785) 840-9387
Kitsap Lyme, Lakebay, WA
Anna & Lorraine Hart
[email protected]
(253) 307-4637
Location: Key Center Library
8905 Key Peninsula Hwy. N,
Lakebay, WA 98349
Meeting room
Date: Every 1st Saturday of the Month
Time: 3-5 p.m.
Topic: Open
Note: All meetings are scent-free (no
perfumes)
The WA LDUC’s Online Support Group
http://health.groups.yahoo.com/group/W
ALDUC-Support
CHAPTER MEETING DIRECTIONS:
*** Grinnell Chapter
Meetings are at United Methodist
Church at 5th and Park. When coming
on 6th Avenue, turn south onto Park
Street. Go one block to the church.
When coming on 146, turn east on 5th
Street, go 3 blocks and the church will
be on the right side.
*** Sioux City Chapter
Meetings are at St. Lukes Hospital. From
I-29 north, go to 147 B Exit (which is
Nebraska Street) – follows Nebraska
Street straight to 27th Street and then
turn left onto 27th Street. Go one block
and you will come to St. Luke’s Regional
Medical Center (2720 Stone Park Blvd).
There is free parking across the street
from the hospital. Enter the first
building on the left’s canopy (as it is the
main hospital building) and go to the
right to the public elevators. Go to the
lower level and go to the atrium. Follow
the signs.
*** Des Moines Chapter and
Children’s Group Meetings
Urbandale Public Library
Corner of Douglas and 86 Street
West Des Moines/Urbandale
See website for further directions:
http://wwwl.urbandalelibrary.org
*** Cedar Rapids
Marion Library, 1095 6th Ave. The
Marion Library is just one block from
the 7th Avenue and 10th Street stop
light. (Marion’s 7th Avenue is the same
as Cedar Rapids’ 1st Avenue).
*** Council Bluffs/Omaha
From the West: Take I-80 East. At the
I-80 I-29 split, stay to the left on I-80. I80 East to Exit 5 in Council Bluffs
(Madison Ave/Council Bluffs exit) Turn
Right onto Madison Ave. Turn Right
onto Valley View. Turn Left onto
Greenview Dr. (2111 Greenview Dr.)
Fire Station #4- on the corner
From the East: Take I-80 West. I-80
West to Exit 5 (Madison Ave/Council
Bluffs exit). Turn Left onto Madison Ave.
Turn Right onto Valley View. Turn Left
onto Greenview Dr. (2111 Greenview
Dr.) Fire Station #4, on the corner.
*** Davenport Chapter
I-80 to Brady Street Exit which becomes
Welcomway and Harrison area—go to
one-way and go East and then turn right
onto Main Street. Library is at 321
North Main Street.
*** Sister-Group (Brainerd MN)
Minnesota Lymefighter’s Advocacy —
Brainerd Library’s address: 416 S 5th
Street, Brainerd, MN 56401 (218) 8295574 (library phone number).
Directions: Intersection of Hwy 210
(Washington Street) to 4th Street. Turn
south on 4th Street. Go two blocks to
the stop sign. Turn left on Laurel Street.
Go one block. Turn right on 5th Street.
Go two blocks. The Brainerd Library
will be on your right side. Park in the
library’s main parking lot and use the
main entrance for the meeting room.
*** In the Lyme Light, MN LDUC
Call Jackie Penke for details
(320) 234-3666
*** Nebraska LDUC –
Coming from Council Bluffs, IA – I 680
West to North Omaha, NE to 275 North
– go 71 miles to Norfolk – turn Right
onto NE 35 West and go 1.1 miles – (at
Norfolk) – stay straight onto North
Victory Rd in Norfolk- go left onto
Benjamin Ave. on right side of road is
NE Community College- Lifelong
Learning Center is at center of college (it
is the 1st bldg to be seen from highway)
– free parking / handicap accessible
Or
If coming from Northern NE to
Norfolk – Hwy 81 South into Norfolk –
go left onto Benjamin Ave- go to 2
stoplights and NE Community College is
on the left side – past the railroad
tracks—it is the 1st bldg viewed from
the highway- go left—free parking on
the right
*** Nevada LDUC – Mountainview
Hospital, 3100 North Tenaya Way, Las
Vegas, NV 89128
Free Valet parking is available for the
members’ convenience. Signs are
posted and a greeter is assigned.
*** Seattle Lyme Group
Andrea (206) 669-3146
From I-5 north take 130th exit; just
before the light at 130th, turn right onto
Roosevelt Way, turn left onto 15th Ave
NE (major intersection with a chevron,
7-11, Brown Bear Car Wash and Sylvan
Learning Center on the corners); turn
right onto NE 135th Street; turn left
onto 17th Ave NE. At NE 140th Street
you will see the back gate/entrance of
our condo complex on the left. Find
parking on the street, walk through the
gate and follow the signs to the cabana
located near the pool.
From I-5 South - Take N 145th Street
exit; turn left onto N 145th Street; pas
through traffic light at 15th Ave NE; take
next right onto 17th Ave NE. At NE
140th Street you will see the back
gate/entrance of our condo complex on
the left. Find parking on the street, walk
through the gate and follow the signs to
the cabana located near the pool.
*** Kitsap Meeting, Lakebay, WA
Meeting Room: Key Center Library,
8905 Key Peninsula Hwy N
Heading West: take Hwy 16 to the
Purdy/302 Exit; follow the Key
Peninsula Hwy to the above address
Heading east: take Hwy 3 to Hwy 301,
then to the Elgin-Clifton Rd. Exit. Head
south (make a right at the light) on Key
Pen Hwy to the above address
'Need to Know Health Info'
Bacteria die-off - A Herxheimer Reaction
- Why you get worse before you get
better
http://www.angelfire.com/me2/StarShar/
Herx1.html
________________________________________
How to interpret your Lyme Western
Blot
http://www.personalconsult.com/articles
/drjonesapproach.html
________________________________________
Dr. Burrascano's Lyme Symptoms
Checklist
http://www.lymedisease.org/resources/p
df/Symptomchecklist%20burrascano.pdf
________________________________________
Drug and Supplement
Interactions/Contraindications
http://www.drugdigest.org/wps/portal/d
digest
________________________________________
Candida/Fungal Overgrowth Symptom
Checklist
http://cassia.org/candida.htm
________________________________________
Candida Yeast Infection Treatments and
Diets from Dr. Podell
http://www.drpodell.org/yeast-infectiontreatments.shtml
________________________________________
How to interpret your lab results~ (2
links)
http://amarillomed.squarespace.com/ho
wto
http://www.yana.org/aboutbld.htm
________________________________________
One of the Best Explanations of an
Invisible~ The Spoon Theory
http://www.butyoudontlooksick.com/navi
gation/BYDLS-TheSpoonTheory.pdf
Foundations That May Help
Patients with Medicine Costs
Prescription Hope (IV and oral
antibiotics for low-income LD patients)
1-877-296-4673
Partnership for Prescription
Assistance
1-888-4ppa-now (477-2669)
http://www.pparx.org
RxHope 1-877-267-0517
https://www.rxhope.com/about.aspx
Needy Meds (medicines for low-income
patients) – www.needymeds.org You
may also call 1-978-865-4115
Frequently Requested Phone
Numbers & Websites
Free Prescriptions – continued…
Patient Access Network
Foundation
PO Box 221858
Charlotte, NC 28222-1858
1-866-316-PANF (7263)
www.patientaccessnetwork.org
The Health Well Foundation
PO Box 4133
Gaithersburg, MD 20878
1-800-675-8416
www.healthwellfoundation.org
Chronic Disease Fund
Suite 400
10880 John W. Elliott Drive
Frisco, TX 75034
Patient Advocate Foundation
Suite 200 -700 Thimble Shoas Blvd
Newport News, VA 23606
1-866-512-3861
Free Air flights to Doctor’s
Appointments – if qualified
http://aircareall.org/listings.htm
Miracle Flights: 1-800-FLY-1711
(for medical air travel on large airlines –
free – if qualified) Will take adults &
children – Not only for Children
www.miracleflightsforkids.org
National Patient Travel Helpline:
1-800-296-1217
Disability Aid –“Iowa Compass
Your Guide to Disability”“
Call 1-800-779-2001 to order or e-mail
[email protected]
Medical Lifeline Button: push a
button for Medical Emergency or
Burglary or Fire: 1-888-834-8665 or
call your local hospital to see if they
offer a Lifeline service – often
Medicare, Medicaid or Insurance
covers this service.
Military Group Support —–
http://health.groups.yahoo.com/group/m
ilitarylyme
Rockford Hyperbaric Chamber,
Rockford, IL (1- 815-395-1450)
Department of Human Services (DHS)
- waivers for chronically ill patients:
Call 211 in your state.
•
ILL & HANDICAP waiver
•
Brain Injury waiver
•
Elderly waiver]
•
Physically Disabled waiver
Iowa Compass 1-800-779-2001
Need a wheelchair, or a handicappedequipped car, or other services for those
on Disability?
Attorneys
To locate your State’s Disability
Attorney: 1-800-431-2804
E-mail: [email protected]
Social Security Disability Attorneys—
•
Max Schott & Associates
Windsor Heights IA
(515) 277-4727
•
Neil Good
Chicago IL
(847) 577-4476
Workman’s Compensation Lawyer—
Hamilton Law Firm (515) 309-3536
Jim Hamilton, Attorney
Clive, IA
Will sue Insurance companies
Bill L’Esperance
Will sue Veteran’s Affairs
Will sue Insurance Companies in
Federal Court
1-866-463-0143 or (505) 266-8482
Suicide Prevention
24-hour phone lines open
Suicide Prevention: 1-800-273-TALK
National Suicide Prevention Lifeline
1-800-273-8255
BEAT IT - For natural (no chemicals)
tick-prevention bug spray (good for
children, adults, and animals)
1-800-219-9765
TRIAZICIDE - Lawn spray to prevent
ticks in your yard: 1-800-917-5438
“Frontline” – Best tick-prevention for
pets – (at Veterinarian’s office)
Best tick non-aerosol for clothing
(tick prevention) ---“Clothing and
Gear Spray” with Permethrin – check
with your local “outdoor” shop - $15 for
32 oz bottle.
Monavie—healing juice—enhances
immune system - [email protected]
Betty: (641) 990-7806
Oreganax (natural antibiotic)
North American Herb & Spice Co.
1-800-243-5242
Epicor – vitamin to enhance immune
system -Chemical Free
1-866-994-9155 or 1-888-401-1105
Carnivora – (herb) & Lymph Drainage:
www.carnivora.com
Alternate sources for Teasel Root
tincture made from FRESH
Dipsacus sylvestris root include:
Pharmacopia Herbals in Oregon
www.pharmacopiaherbals.com
Jean's Greens in New York State
www.jeansgreens.com
Woodland Essence in Cold Brook, NY
www.woodlandessence.com
Walker Farms in Wisconsin
www.walkerherbs.com/
Judy’s Organic Herbs (Canada only)
www.earthmedicine.ca
Longevity Plus- Immuni T3 (based on
transfer factor) -- (for HHV-6) Immune
booster 1-800-580-7587
www.longevityplus.com
Alternative medicines – Dr. Scott
Taylor, DVM - www.myremedi.com
Rife Machine: (about $500) Call our
office for info: 1-515-432-3628
Lyme disease patients tout effective
stress relief pills:
Shaklee Products
Order “Stress Relief Complex
All natural – herbal ingredients
1-800-233-5422
Probiotics: Pearls Immune
www.organicpharmacy.org
•
very cost effective
•
low cost
You can find this at:
www.riteaid.com
www.vitaminworld.com
www.longsdrugs.com
www.mdproducts.com
Morgellon’s Patients info:
www.gingersavely.com
To order Western Blot test kits to test
for Lyme disease:
•
IGENEX Labs
1-800-832-3200
•
Fry Labs (for Co-infection
testing): 1-480-292-8560
www.frylaboratories.com
•
Clongen Labs (to test tick for
LD): 1-301-916-0173
IV Care Companies:
All of the companies below are in every
state:
•
Coram Health Care
www.coramHC.com
Nationwide:1-800-423-1411
Iowa: 1-800-999-2298
•
Option Care - Call general
information to get phone numbers
in your state.
Iowa: 1-800-879-6137
Iowa: 1-319-363-1284
•
Infuserve America:
1-800-877-6137
1-800-886-9222
•
Apria Nursing Care
IV Care - Nationwide
Iowa: (515) 270-0536
Iowa: Wesley Home Health Care
(515) 288-3334
Best Eastern Medicine website for LD
www.myremedi.com
www.thehealingartspartnership.com
Best Western Medicine websites for
LD: www.drerniemurakami.com
www.jemsekspeciality.com
To Order “Under Our Skin” DVD
www.openeyepictures.com
To order Films & Documentaries
regarding Lyme disease
“Nuts and Bolts of Ld” –
Treatment Guidelines
www.ilads.org or www.lymelife.com
Reading List
Magazine about Lyme disease
www.lymetimes.org
Newspaper publication about Lyme
disease— www.publichealthalert,.com
(free to read online)
Go to www.lymebook.com to order some
of the books listed:
Coping with Lyme Disease by Denise
Lang
Beating Lyme by Constance Bean
Treating Lyme Disease by Bryan Rosner
(or several others by Bryan Rosner)
Babesia by Dr. James Schaller
The Use of the Herb Artimesia for
Babesia, Malaria, and Cancer by Dr.
James Schaller
Lyme in Rhyme (for children) by Gerri
Rodda, RN
Cure Unknown by Pamela Weintraub
Cell Wall Deficient Forms by Dr. Lida
Mattman
Bulls Eye – Unraveling the Medical
Mystery of Lyme Disease by Dr.
Jonathan Edlow
Everything You Need to Know About
Lyme Disease by Karen VanderhoffForschner
Widening Circle by Polly Murray
Lyme Disease Update: Science, Policy,
and Law by Marcus Cohen
Living a Healthy Life with Chronic
Conditions by Kate Lorig
Lyme Times Magazine -www.lymetimes.org
Public Health Alert newspaper –
www.publichealthaler.com
The Lyme Disease Solution by Dr.
Kenneth Singleton
The Lyme Disease Survival Guide by
Bryan Rosner
Baker’s Dozen by P.J. Langhoff
Insights into Lyme Disease Treatment:
13 Lyme– Literate Health Care
Practitioners Share Their Healing
Strategies by Connie Strasheim
Healing Lyme: Natural Healing and
Prevention of Lyme Borreliosis and its
Coinfections by Stephen Harrod Buhner
For books written by Sarah Endorf (a
Lyme disease teen-age patient) go to:
www.unsungneighbors.com
Additional reading suggestions~
•
The Makers Diet by Jordan
Rubin (healing diet for illness)
•
The Mediterranean Diet by
Melissa Cloutier (healing diet
for LD patients)
•
The Mediterranean Cookbook
by Nancy Jenkins
Free catalogues to order, to
enhance Lyme disease care:
First Street Catalogue 1-800-704-1210
www.firststreetonline.com
Features:
•
Chi machines for exercise
•
Foot massagers, Walkers
•
Bath aids, Stair chairlifts
•
Leg massagers (compressed air)
•
Games that re-build memory loss
Hammacher Schlemmer
www.Hammacher.com
1-800- 543-3366
Features: Headache wraps
Circulation leg wraps
Heated mattress pads
Mold & germ destroying air
purifier
Electronic temple & eye
massager
To order Lyme disease literature for
your community (there are postage
costs - brochures are free)
To order the following from LDA
•
“The ABC’s of Lyme Disease”
•
“The Lyme R Primer”
•
“Tick Cards”
Call 1-888-366-6611 or
E-mail: [email protected]
To order the following from ILADS –
•
“What Every Primary Care
Physician Should Know About
Lyme Disease”
•
“Lyme Disease Physician Training
Program”
•
Psychiatric Lyme disease”
Call 1-301-263-1080 or
E-mail: [email protected]
Please see the following Internet
connections that may be of aid to you
•
Support Plus: 1-800-229-2910
www.supportplus.com
Gold Violin: (877)648-8400
www.goldviolin.com
Foot Smart: 1-800-870-7149
Dr. Leonard’s Health Care catalogue:
(800) 785-0880
Sleep Solutions Catalogue:
(800) 810-2340
www.shopsleepsolutions.com
Home Trends 1-800-810-2340
Rejuvenate 1-866-956-9355
Swanson’s Catalogue (very
inexpensive vitamins, yet good source
for vitamins): (800)437-4148
www.swansonvitamins.com
Lyme patients are saving money in
vitamin and herb needs by ordering
from a Fargo, ND company:
For example, the herb, marshmallow
is $3.99 per bottle at Swanson’s, vs. a
traditional health food store cost of
$10.99 per bottle.
Marshmallow is an herb that combats
nausea and aids in healing lesions in the
stomach, and intestines of Lyme
patients.
Milk Thistle is another herb that is
only $1.99 per bottle. Milk Thistle is an
herb which protects the liver, as Lyme
patients take large dosages of required
antibiotics.
Swanson’s Health was established in
1969, and is a family run business.
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www.lymepa.org/Basics2007v1.2Rev.
pdf - free downloadable Brochure
“Lyme Disease and associated tickborne diseases: The Basics” 5th
Edition 2007 by Douglas W. Fearn,
of the Lyme Disease Association of
Southeastern Pennsylvania.
Written in a nontechnical Questionand-answer format and was
reviewed for accuracy by several
prominent Lyme-literate
physicians.
www.ilads.org — website of the
International Lyme and Associated
Diseases Society. Download Dr.
Burruscano’s Lyme treatment
guidelines and a variety of useful
brochures.
www.lymenet.de/literatur/vtsherr_g
ut.htm -gastrointestinal
manifestations of Lyme.
www.mentalhealthandillness.com/ly
meArticles.htm -psychiatric
manifestations of Lyme.
www.lymeinfo.net/multiplesclerosis.
html - Lyme and multiple Sclerosis
www.publichealthalert.com -monthly newspaper on Lyme and
related issues. Read it free on-line.
Website Provides Free Public
Access to Full Journal Articles
For a number of years the public has
been able to read abstracts of peerreviewed articles published in science
and medical journals at
www.pubmed.gov . Now there is a
website that provides free access to the
entire article, not just the abstract. It is
www.plosone.org. – reprinted from
Prime Time Lyme newsletter (Nov.
2009)
www.lymeinducedautism.com - Lyme
and autism
www.lymedoctor.com - website for the
book The Lyme Disease Solution, by Dr.
Kenneth Singleton. Highly
recommended as a primer for people
needing to learn about Lyme disease,
fast.
www.cureunknown.com —– website for
book Cure Unknown: Inside the Lyme
Epidemic, by Pamela Weintraub. This is
an excellent explanation of the scientific,
medical and political turmoil
surrounding Lyme disease.
www.underourskin.com —– website for
Under Our Skin, award winning
documentary film about Lyme disease.
Under Our Skin Available for Purchase
The long-awaited final version of the
DVD “Under Our Skin” is finally
available for purchase. The preview
version became available a year ago.
This new version is the exact same basic
film, with additional features: new data;
an hour of bonus footage, including
interviews with the filmmakers and
subjects; theater trailer; character
updates; and deleted scenes. It also
includes director’s commentary,
Spanish and French subtitles, closedcaptioning, and a 32-page informational
booklet. It has extended interviews with
author Amy Tan and Lyme discoverer,
Dr. Willy Burgdorfer, plus a cameo by
U2’s, The Edge. This DVD has just
become available. Orders will start
shipping on Sept. 29. For private home
use, the cost of the DVD is $34.95 plus$6
shipping. The cost with the legal right to
show it to support groups or the public
is $95. This does not include the right to
charge admission. To charge admission
or to show the film as a fundraiser,
contact [email protected] .
To order the film, ”Under Our Skin”,
go to www.underourskin.com and click
on “Store” at the top of the screen.
LDUC VOLUNTEERS NEEDED
Volunteers needed in each state to aide
state leaders. Help that is needed:
•
On-line researchers
•
Volunteers to help with lectures
and major events
•
LD brochure distributors in various
communities
•
Fundraisers for the LDUC
•
Help to set up support group
meetings
•
“Suggestion” volunteers —
suggestions for speakers for LD
support groups
To volunteer e-mail:
[email protected]
Call: (515) 432-3628
FRIENDS OF THE LDUC – HOW TO
FIND A SUPPORT GROUP IN YOUR
REGION: www.lymenet.org
Illinois: contact: Lauren Egler.
E-mail: [email protected]
Kansas City, Mo & KS: Greater Kansas
City Lyme Assoc. (LDA)
Kathy White (913) 438-LYME
E-mail: [email protected]
Jefferson City MO:
MO Tic k Illness Coalition (LDA)
– Laurice Stevens
E-mail: [email protected]
Colorado – contact Mary Parker
Email: [email protected]
Michigan: Michigan Lyme Disease
Assoc. (586) 725-2412
Email: [email protected]
Virginia & Maryland: NATCAP Lyme
(703) 821-8822
[email protected]
The LDA of IA & LDUC promotes safe,
alternative health care, but advises
checking with your LLMD physician
to OK all products mentioned
***DISCLAIMER***
Judith Weeg is not a physician, and
ideas on products promoted are
suggested only, in conjunction with,
your physician-prescribed health
care plan.
HOW LIGHT THERAPY CAN HELP
ALLEVIATE CONDITIONS
ASSOCIATED WITH LYME DISEASE
Though claims for
light therapy in the
past were viewed
with skepticism, the
explanation of how
light therapy works
is relatively simple.
Mitochondria absorb
the light & convert it
to ATP which fuel
processes at a cellular level. Surplus ATP
can trigger many beneficial effects such as
reduced inflammation, improved blood
flow, protein and enzyme synthesis, and
cell replication and repair. Light therapy
excels at reducing muscular and skeletal
aches & pains, and also is used for carpal
tunnel, arthritis and other auto-immune
diseases, soft tissue damage, and in
detoxification protocol. It has also been
shown to help combat pain associated
with diabetic neuropathy and to
accelerate healing of diabetic ulcers.
Besides its many therapeutic
applications, light therapy has other
advantages. Treatment sessions are brief-from 5 to 30 minutes--and are safely
applied in the comfort of one’s own home
and as often as needed, thus avoiding
traffic, waiting rooms and high medical
expenses for office treatments. Positive
response is normally quick & begins
reducing pain in 1-3 treatments. It’s noninvasive, painless and safe, used in MASH
units, by NASA and more and more often
by medical professionals and pain clinics.
Long time independent research indicates
there are no known negative side effects
nor a conflict with medications.
John Darling, an avid golfer, writes:
“After eight holes my hip, back, left
shoulder & elbow, which also have bone
spurs, became extremely painful. By the
end of the second nine I could hardly walk
or swing a club and I was in severe pain. I
used the NOVA on my hip, shoulder, and
elbow and the pain was almost
completely gone within an hour and I was
once again mobile. Following hip
replacement surgery I used the NOVA and
had no severe pain in my hip as doctors
expected. I discontinued using Vicodin
within a week.”
Originally cowboys used this
technology on horses and the family dog.
It was so successful they began using the
units on their sore and often trashed
bodies for pain relief and bruising. Join
over 100,000 people who have received
the benefits of this amazing technology
and experience a better quality of life
NOW. Don’t wait. Go to
www.lightsoundtechnology.com
For more articles and audio and video
testimonials.
Order from “Store” and in step 2 of 3 (in
order process) under Discount Coupon
use redemption code lyme and SAVE
$115.
Much of the world population may be
carriers of Lyme, says Dr. Harvey from
Houston, Texas. It is the opinion of many
of the best integrated or complementary
physicians that while dealing with Borrelia
and the secondary infections associated
with it, the patient should be in a
detoxification program. Light therapy is
used as a catalyst, accelerator and pain
reducer for detoxing.
www.lightsoundtechnology.com
1-866-885- HEAL (4325)
Lyme patients’ cost $85 per NOVA
(Order Model 9000) Light Sound
Machine Code in Lyme to get
discount.
Please send this page along with your tax deductible contribution to the address listed below. In turn, we will send you a
copy for your tax records.
Mail to: Lyme Disease United Coalition
P.O. Box 465
Boone, IA 50036
Please make checks payable to: Lyme Disease United Coalition.
The Lyme Disease United Coalition is a tax exempt and non-profit 501(c) (3) organization.
Federal ID # upon request ________________________________________
NAME _____________________________________________________
ADDRESS __________________________________________________
CITY & STATE _______________________
ZIP CODE ______________
TELEPHONE ______________________________
E-MAIL ____________________________________________________
DO WE HAVE YOUR PERMISSION TO PRINT YOUR NAME ON THE CONTRIBUTION PAGE OF THE NEWSLETTER?
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Thank you in advance for your time and your generous contribution. Your funds aid in educating schools, physicians,
and the public, regarding the definition, care, and preventability of Lyme disease
LDA of Iowa Member---If you have not sent your dues in yet--- please help us keep LDA alive in Iowa.
Membership is due now. Let’s keep the LDA alive with these dues. Your dollars go toward educational materials going
to schools, mailings to Lyme patients and doctors; overhead costs of running a large organization. As an example—to
copy and bind booklets that educate doctors in the treatment of Lyme disease, the cost is about $50 per booklet.
Help us help you with the membership dollars:
Due- $20 per family (not per person)
Mail to address below with your donation:
Name: _________________________________________________________
Street Address: ____________________________________________________
City, State, Zip code: ________________________________________________
Telephone: ________________________________________________________
E-mail: ___________________________________________________________
Amount Enclosed: ___________________________________________________