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Vol. 3, Issue 7 Investigating Lyme Disease & Chronic Illnesses in the USA July 2008
Conference Info p. 18
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Page 2 www.publichealthalert.org Public Health Alert
Public Health EDITORIALS
Alert
The PHA is committed to
...And We All Fall Down
researching and investigating Lyme
Disease and other chronic illnesses by Dawn Irons
in the United States. We have
joined our forces with local and
As a child, I was always
nationwide support group leaders.
These groups include the chronic ill- fascinated with the game of lin-
nesses of Multiple Sclerosis, Lou ing up dominos in close
Gherig’s Disease (ALS), Lupus, sequence, and in a pattern, so
Chronic Fatigue, Fibromyalgia, that when you tipped one domi-
Heart Disease, Cancer and various
no, you would set off a chain
other illnesses of unknown origins.
reaction called the “domino
PHA seeks to bring information effect.” I would spend hours
and awareness about these illnesses doing this on the kitchen floor.
to the public’s attention. We seek to As I became older, more
make sure that anyone struggling
mature and uhhh...cynical, I
with these diseases has proper sup-
port emotionally, physically, spiritu- came to see the same pattern of
ally and medically. the “domino effect” in my myri-
ad of health problems.
My latest domino to fall
PHA Staff has been my hearing. I visited
the audiologist last week and
Editor: Dawn Irons she looked at my previous tests
Asst. Editor: Susan Williams from 5 years ago and then com-
Asst. Technical Editor: Laura Zeller
pared them to the test she had
Distribution: Steve & Rhonda Cope,
Leslie Aune, & Victoria Lott done that day. In her opinion I
should have been prescribed
Contributors: hearing aids 5 years ago! She
Donna Reagan, showed me the drastic loss of
Ginger Savely, FNP, Lyme disease is a bacterial infection that affects multiple body systems. Patients will typically be
hearing over the last 5 years all
Marjorie Tietjen bounced from specialist-to-specialist and be given numerous misdiagnoses before ultimately being
Scott Forsgren, graphed out nicely on a chart.
diagnosed with Lyme disease. This kind of late diagnosis is how patients end up with the chronic
Dr. J David Kocurek, It seems so clinical to
form of the disease.
Susan Williams, Laura Zeller, discuss the graph and chart, but
PJ Langhoff, the frustration of that reality exchange all these dominoes for opinion; all the while ignoring that wrote the 2006 guidelines
Dr. James Schaller, M.D., the FUN kind I had as a child! I the literature that they did not for diagnosis and treatment of
comes to a head when I find
Tami Duncan, Linda Heming, don’t find these new dominos to agree with. Lyme disease...all proven to be
Megan Blewitt, myself getting overly irritated
Joan Vetter. because I cannot understand my liking...at all!! The treatment guidelines true by the Connecticut
people that are just 2 feet in I was recently reading a that were written by that very Attorney General.
Website: front of me. I find myself snap- research paper on the multi-sys- committee came under the The research is over-
www.publichealthalert.org ping at my family, “Do not temic symptoms of Lyme dis- investigation of the Connecticut whelmingly CLEAR that Lyme
e-mail: speak to me unless you are ease as confirmed through Attorney General Richard disease will affect multiple
editor@publichealthalert.org LOOKING at me! How many MANY professional peer- Blumenthal and was found to body symptoms. Be of good
times have I told you that??!!” reviewed journals. I ran across have copious amounts of vary- cheer! It really is in your brain,
Donations: My family thought that I another book ing conflicts your heart, your joints, your
If you would like to make a dona- was just being overly sensitive. where a so- of interest and endocrine system, respiratory
tion to PHA you may do so through Quite often I was a bit taken called Lyme financial gain. system, your eyes, your ears,
Paypal. Please send the donations to aback at my own short fuse and “expert” said “If one falls So for- your liver...ad nauseum!
the following address: was convinced I just needed a that, “the more give me if I It is my sincere desire,
vacation! I am sure they wish I widespread and down, his friend doubt the through the outreach and educa-
donations@publichealthalert.org peculiar the “expert” tion of the PHA, that I will be
We cannot accept credit card pay-
would have taken one too!
Oh yes...the dominos symptoms are, can help him advice from a able, along with my staff and
the more likely doctor that writers, to offer you hope and
ments. Donations should be sent
from a VERIFIED PayPal account.
will fall! It is just not so enter-
taining at this stage in my life! the complaint is up. But pity the settled out of encouragement in your journey
w w w. t r u t h a b o u t l y m e d i s e a s e . c o m
Q: Did you know that there are about 100 tick-borne disease symptoms?
A: Neither does your doctor.
Visit us today and get educated about Lyme disease. Finally solve the mystery, once and for all, as to what may be causing your symptoms.
Specializing in Lyme
® Disease and Associated
Tick-Borne Diseases
IGeneX, Inc.
innovation
dedication
state-of-the-art
research and
reference laboratory
Disclaimer: We are not medical doctors nor veterinarians. By law, we cannot diagnose, treat, cure or prevent any disease. Our biofeedback equipment has been registered with the FDA (or appropriate governmental agency). By law, it
cannot diagnose, treat, cure or prevent any disease. It is intended to teach you how to relax and manage your stress. We are biofeedback specialist (or neurotherapists) and we do not diagnose, treat, cure or prevent any disease. We do
not dispense any drugs of any kind.
Ticktoons
A Lyme Literate
Medical Doctor will
HEAR you...
...not dismiss you.
by Terri Reiser
Public Health Alert www.publichealthalert.org Page 11
FEATURES
Top 10 Tips to Prevent Chronic Lyme Disease
by www.ILADS.org Contrary to popular 4. Don't assume that you Lyme disease even if your tests you don't have another condi-
belief, Lyme disease is not just can't have Lyme disease if are negative. tion or coinfection.
For those who suffer an "East Coast" problem. In you don't have a rash
from chronic Lyme disease, life fact, in the last ten years, ticks Lyme disease is difficult 7. Avoid taking a "Wait and 10. Expect success
is never the same again. People known to carry Lyme disease to diagnose without a rash, See" approach to treatment You should expect to
with chronic Lyme can have have been identified in all 50 Bell's palsy, arthritis, or menin- Up to seventy percent of get better. You should not
many debilitating symptoms, states and worldwide. gitis, but you can still have ticks in Lyme-endemic areas accept "watchful waiting" - the
including severe fatigue, anxi- Although the deer tick is con- Lyme and not have any of those are infected with Lyme or other practice of stopping antibiotic
ety, headaches, and joint pains. sidered the traditional source of signs or symptoms. Many peo- tick-borne diseases. With odds treatment before you are well
Typically, chronic Lyme Lyme Disease, new tick species ple react differently to the like that, if you have proof or a and then waiting for symptoms
patients have a poorer quality such as the Lonestar tick and infection and experience high suspicion that you've been to clear on their own. Some
of life than patients with dia- the Western blacklegged tick, fatigue, headaches, irritability, bitten by a tick, taking a "wait doctors advocate stopping
betes or a heart condition. have been found to carry anxiety, crying, sleep distur- and see" approach to deciding Lyme treatment while the
The fact is that Lyme is Borrelia burgdorferi, the bance, poor memory and con- whether to treat the disease has patient is still symptomatic and
a complex disease that can be corkscrew-shaped bacterium centration, chest pain, palpita- risks. The onset of Lyme dis- then hoping that he or she will
very difficult to diagnose. that causes Lyme disease. tions, lightheadedness, joint ease symptoms can be easily evenually recover without fur-
Reliable diagnostic tests are not Avoiding a tick bite pain, numbness and tingling. overlooked or mistaken for ther treatment. Government tri-
yet available which leaves remains the first step in pre- other illnesses. Once symp- als have identified a number of
many patients, and physicians venting chronic Lyme disease. 5. Do not rely on test results toms are more evident the dis- individuals whose symptoms
alike, relying on the so-called One needn't have been "hiking Currently there is no ease may have already entered did not clear when treatment
"telltale signs" of Lyme dis- in the woods" in order to be bit- reliable test to determine if the central nervous system, and was cut off prematurely. There
ease: discovery of a tick on the ten by a tick. There can be someone has contracted Lyme could be hard to cure. This is are doctors who feel your
skin, a bull's eye rash, and pos- ticks where ever there is grass disease or is cured of it. False one case in which an ounce of symptoms will clear with fur-
sibly joint pain. However, or vegetation, and tick bites can positives and false negatives prevention really is worth a ther antibiotic treatment. phaa
ILADS research indicates only happen any time of year. often occur, though false nega- pound of cure.
50% to 60% of patients typical- Spraying one's skin with DEET tives are far more common. In
ly recall a tick bite; the rash is or one's clothes with perme- fact, some studies indicate up to 8. Don't be afraid to get a sec- Support by Turn the Corner
reported in only 35% to 60% of thrin-containing insect repel- 50% of the patients tested for ond opinion Foundation
patients; and joint swelling typ- lent, wearing long sleeves and Lyme disease receive false neg- Recognize that opinions
ically occurs in only 20% to long pants, and "tucking pants ative results. As a result, the on how to diagnose and treat Turn the Corner Foundation
30% of patients. And given the into socks", continue to be the CDC relies on physicians to Lyme disease vary widely (TTCF) is dedicated to the sup-
prevalent use of over-the-count- best ways to avoid ticks attach- make a clinical diagnosis based among physicians. It is worth port of research, education,
er anti-inflammatory medica- ing to the skin. But don't forget on a patient's symptoms, health getting a second or even a third awareness and innovative treat-
tions such as Ibuprofen, joint the post-walk body check. history, and exposure risks. opinion, especially if you are ments for Lyme disease and
inflammation is often masked. 2. Check your tick facts Doctors who are experienced in symptomatic and your doctor other tick?borne diseases.
Based on these statis- Ticks can vary in size recognizing Lyme disease will advises not to treat, or symp- Since its inception, TTCF has
tics, a significant number peo- from a poppyseed-size nymphal treat when symptoms typical of toms recur or persist after treat- organized and supported count-
ple who contract Lyme disease tick to the sesame seed-size the illness are present, even ment. Keep in mind that your less programs that address
are misdiagnosed during the adult tick. The ticks can carry without a positive test, in an physician may focus too nar- Lyme disease education, diag-
early stages of the disease, other infectious agents beside effort to prevent the develop- rowly on diagnosing and treat- nosis and treatment.
leading to a chronic form which the spirochete that causes Lyme ment of chronic Lyme disease. ing a single symptom. For
can prove even more difficult to disease, including Ehrlichia, example, a physician may diag- About ILADS
diagnose and treat. Lyme dis- Anaplasma, Babesia, and 6. Be aware of similar condi- nose a pain in your knee as ILADS is a nonprofit, interna-
ease is often referred to as the Bartonella. Lyme disease can tions "arthritis", and not see this as tional, multidisciplinary med-
"great imitator" because it sometimes be hard to cure if Chronic Lyme disease is just one part of a larger set of ical society, dedicated to the
mimics other conditions, often these other infections are not called the "great imitator" symptoms that adds up to a diagnosis and appropriate treat-
causing patients to suffer a treated at the same time. because it is often misdiag- diagnosis of Lyme disease, ment of Lyme and its associat-
complicated maze of doctors in nosed as another condition such which requires different treat- ed diseases. ILADS promotes
search of appropriate treatment. 3. Show your doctor every as multiple sclerosis, fibromyal- ment. understanding of tick?borne
ILADS is committed to the pre- rash gia, chronic fatigue, or anxiety. diseases through research and
vention of chronic Lyme dis- The bull's-eye rash is Misdiagnosis is a common 9. Know your treatment education and strongly supports
ease. the most famous, but there are experience for patients with options physicians and other health
many other types of rashes chronic Lyme disease. Work with your doctor care professionals dedicated
The following tips are designed associated with Lyme disease. Treatments that work for these to identify the appropriate treat- toadvancing the standard of
to offer guidance and minimize In fact, Lyme disease rashes other illnesses are not appro- ment option if your symptoms care for Lyme. and its associat-
the risk of contracting chronic can be mistaken for spider bites priate for treating Lyme dis- persist. There is more than one ed diseases.
Lyme disease. or skin infections. Take photos ease. Currently, the only effec- type of antibiotic available.
and make sure a medical pro- tive treatment for Lyme disease Longer treatment is also an For more information visit
1. Know that Lyme disease is fessional sees the rash before it is antibiotics. Ask your doctor option. You should also work the ILADS website at
a nationwide problem fades. to carefully evaluate you for with your doctor to make sure http://www.ilads.org/
Book Review
A Husband, A Wife and an Illness:
Living Life Beyond Chronic Illness
important that we try to under- giver. made the situation much worse. the book shares William's per-
stand why this is happening so William July, PH.D has I'd like to include an excerpt spective as a caregiver. Some of
that we can prevent or lessen published several books, one of from the back cover of their the subjects he covers are the
the incidence of chronic dis- which is a national bestseller. book. financial problems encountered,
ease. However, in the meantime He also appears regularly on "We were living the creating a "new normal"and
we need to learn how to cope television where he shares his American dream. But when ill- how the caregiver needs to
with the sometimes extreme perspectives on the psychology ness invaded our lives, it tore attend to their own needs so
difficulties inherent in dealing of relationships and other those dreams apart and we were that they don't fall apart in the
with chronic illness. issues. His wife Jamey was thrust into a fight for our sur- process of trying to be every-
Chronic illness is very very active in the field of health vival. In the devastation, we thing for everybody. He advis-
often a traumatic and devastat- and fitness as a model, instruc- lost our home, our savings, our es that the caregiver should set
ing experience for both the tor, author and lecturer. She has cars and even our dogs. We lost personal goals outside of the
patient and their caregivers. In also appeared on television and everything but each other." illness scenario. This helps to
the book "A Husband, A Wife, has been featured in several William and Jamey's maintain sanity and the sense
and an Illness:Living Life magazines...including SHAPE book very effectively shows that life can still be "normal" in
Beyond Chronic Illness", the and Muscle and Fitness. readers how they can turn some ways.
by Marjorie Tietjen authors share with us their Together they make a most catastrophe into something pos- Most of us who are sick
deeply personal experiences in unique team for presenting a itive. They share with us the with a chronic disease have
Title: A Husband, A Wife and dealing with disability, pain, book on coping with chronic practical ideas which have experienced the ignorance and
an Illness: Living Life Beyond guilt, other emotions and finan- illness. I found it very interest- worked for them and how ill- arrogance of many physicians.
Chronic Illness cial loss. Dr. William July and ing and ironic that the difficult ness in the family has helped Of course there are intelligent
his wife Jamey wrote this book issues they have to cope with both of them to define priorities compassionate doctors but it
Authors: Dr. William July and so that families, friends, care- on an every day basis directly and to grow spiritually. Both seems that most of us who have
Jamey Lacy July givers and the patient, could correlate with their professions. William and Jamey are very an undefinable or unaccepted
better understand the many Jamey and William had honest about the emotions they chronic disease, have a very
ISBN: 978-0-595-44726-8 issues involved when one suf- just about anything they could experience....and what one can difficult time finding doctors
fers from long term disability. ever want until Jamey became do to work with these emotions, who actually look at the facts,
Unfortunately a growing The authors stress the fact that ill with Chronic Lyme disease which affect most chronically listen to the patient and try to
segment of our society is hav- chronic illness does not just and Morgellon's disease. Heavy ill patients and their caregivers. discover the root of the prob-
ing to deal with the disabling affect the patient but that it can doses of steroids were pre- The book has been divided into lem. Doctors are educated
effects of chronic illness. It is also drastically affect the care- scribed for her which only two sections. The first part of “Living Life” ... cont’d pg 16
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Speakers
Steve Harris, M.D. - Lyme Disease, Considerations in Diagnosis and Management
Garry Gordon, M.D - The Use of Oral Chelators, Fiber, Zeolite and Silver to lower total body burden of mercury, pathogens and toxins.
Aristo Vojdani, PhD - Clinical Neuro-Immunology: Immune Dysfunction Pathways to Neurologic Disorders in ASD and Lyme Disease.
Josh Berry, N.D.- Botanical, Nutritional and Homeopathic treatment of Lyme Disease.
Stephen Harrold Buhner - Healing Lyme: Natural Healing and Prevention of Lyme Borreliosis and its Coinfections - physicians training
William Lee Cowden, M.D. - Quantum Physical Testing and Treatment of Autistic Children
Jeff Wulfman, MD - The Big Picture: How Lyme Borreliosis, Chronic Infections, Toxins and Other Factors Relate to the Autism Epidemic.
Leo Shea III, PhD and Judith Leventhal, PhD- Neuropsychological Features in Children with Tick Borne Illnesses Diagnosed with Autism Spectrum Disorders
and/or ADHD.
Stephen Buhner - Healing Lyme: Natural Healing and Prevention of Lyme Borreliosis and its Coinfections
Amy Derksen, ND - Non-Antibiotic Lyme Protocols for Kids.
Tamara Mariea, CCN - "EMR" How Electromagnetic Radiation affects an individuals ability to sucessfully detoxify and how "EMR" plays a synergistic role in
the etiology of Autism Spectrum Disorders.
Garry Gordon, MD - The End of Lyme is Near!
Christie Dames - Insider Secrets: Healing Insights Through the Eyes of Your Child
http://www.liafoundation.org/
“12 Reasons” ...cont’d from pg 4
http://www.ninds.nih.gov/disor- research support the conclusion Minocyclines, Gentamycin, investigation was launched by ously and aggressively lobby
ders/lyme/lyme.htm) CDC that when an antibiotic is not Doxycycline, quinolones (Cipro the Attorney General into their against bills, at both the state
studies have documented the utilized for its bacterial effects, and many more), perfloxacin, alleged illegal practices, are and federal levels, that would
following: "Chronic Lyme dis- it may still be a safe and effec- Erythromycin, macrolide antibi- telling. Several IDSA members provide for more research fund-
ease involves abnormalities in tive agent for the treatment of otics (roxithromycin, erythro- have gone to other organiza- ing (which they would be enti-
either the skin, the joints, or the conditions such as prostatitis, mycin, azithromycin tions (American Academy of tled to receive through grants
nervous system. Abnormalities chronic sinusitis, acne, staphy- [Zithromax]), Clarithromycin, Neurology and New England also)? Isn't that similar to cut-
in the skin are rare, but include lococcal exotoxins, rosacea, Amoxycillin (Imacillin), Journal of Medicine) and sat on ting off your nose to spite your
localized swelling especially in inflammatory bowel disease, Bactrim (trimethoprim-sul- their panels to promulgate face? Why would they exclude
the ear lobe, arm pit, and nipple rheumatoid arthritis, Crohn's famethoxazole), metronidazole "cookie cutter" treatment guide- evidence, facts and important
areas, and thinning of the skin disease, lung cancer, neu- (Flagyl), Cephalexin, penicillin lines, which they now present details from Congress? Why
on hands and feet [ACA pres- trophilic dermatoses, asthma, G, chloramphenicol, strepto- as "independent corroboration" would they rather let the
entation]… Chronic Lyme dis- periodontal disease, ulcerative mycin, and Clindamycin. Yet, of the IDSA guidelines. shameful situation facing peo-
ease infection of the nervous colitis and other inflammatory the IDSA recommends against Several members of the IDSA ple across the country continue
system most often produces diseases such as dermatitis her- the use of all of these antibi- panel sat on the AAN panel, unchecked than welcome assis-
pain in arms or legs, along with petiformis, Wegener's granulo- otics for Lyme (many which including the chairman of each tance (both financial and scien-
weakness and/or numbness in matosis, leukocytoclastic vas- have been used successfully in panel. In addition, several tific) with open arms? What's
the affected limbs. These prob- culitis, Fox-Fordyce disease, the past on numerous patients), authors of the NEJM guidelines going on here?
lems are caused by Lyme dis- bullous lupus erythematosus, except of course, for the least also were on the IDSA panel. Please realize if this bill
ease infection of the spinal vitiligo, discoid lupus erythe- expensive drug on the list, The IDSA's suggestion that the isn't passed and the federal
cord. With infection of the matosus, pyoderma gangreno- Doxycycline, and even that advisory committee, provided advisory committee isn't assem-
brain, a number of other prob- sum, pustular psoriasis, sclero- drug is limited to a short, "cost- for in the bill, exclude the par- bled immediately, it could be
lems can occur. These include derma, and ankylosing effective", and as already point- ticipation of certain people, decades before any progress is
headaches, severe fatigue, spondylitis, to name a few. The ed out by Dattwyler (IDSA), an namely patients and the com- made. I respectfully request
impaired vision, double vision, use of antibiotics for many con- arbitrarily set course. munity physicians who treat your consideration of the cir-
hearing impairment, facial ditions has gained acceptance 11. The IDSA guideline them, is a continuation of its cumstances in question and ask
paralysis, and difficulties with and has been deemed relatively authors have not only refused exclusionary tactics. The IDSA that you immediately bring the
memory and thinking." Notice safe, according to multiple to recommend antibiotics nec- has virtually controlled research Lyme and Tick-Borne Disease
these government agencies all sources. For example, one essary to successfully address in Lyme disease for the past 30 Act up for a hearing to further
refer to "chronic Lyme dis- study reported, "In conclusion, bacterial infections, they have years with no improvement in shed light on the current abuses
ease", something the IDSA there do not seem to be theoret- further restricted access to any the patient's quality of life. outlined above. We can't afford
insists doesn't exist in its letter ical or demonstrated disadvan- treatment by recommending Enough is enough. to wait. Millions of lives are at
to you. tages in terms of ethical or against the use of all alternative stake. People with tick borne
10. If the IDSA's theo- pharmacological considerations therapies, including such com- For years the IDSA diseases are not only fighting a
ry were true (it isn't) about of using "immunostimulating" mon items as over-the-counter guideline authors have aggres- bacterial infection, they are
antibiotics being able to help antibiotics." (MARIE- supplements (i.e. vitamins, etc) sively fought the inclusion of fighting a war that only you
patients ONLY because of an THE´RE´SE LABRO* to improve a chronically ill anyone into their small circle have the power to stop. Please
"anti-inflammatory effect" they INSERM U 479, Faculte´ patient's overall health. At this who wasn't of the same like do!
possess, then so be it. The Xavier Bichat, 75018 Paris, point patients are worried the pocket book. Their actions
IDSA would still lose their France.) The following antibi- next thing that will be denied over the years, and here today, Sincerely,
argument that patients should otics have been used strictly for them by the IDSA will be the are highly questionable to say Lucy Barnes, Director
be denied antibiotic treatment their "anti-inflammatory" very air they breathe. the least. Reasonable people Lyme Disease Education and
on that basis too. Evidence affects for the conditions listed 12. The actions of the must ask themselves, why Support Groups of America
from basic science and clinical above- Tetracyclines, IDSA panel members, since the would IDSA members continu- AfterTheBite@toad.net phaa
Page 18 www.publichealthalert.org Public Health Alert
MEDICAL PERSPECTIVES