LYMESUCKS

WHO WE ARE

We are mother-daughter Lymies... Bev Feldman and Silver Feldman.  We are bi-coastal when it comes to Lyme: Silver got it in Malibu, CA, and I got bit and infected in Massachusetts when I took Silver for help for her (then undiagnosed) Lyme.  We know that Lyme Sucks BIGTIME.  So we are doing what we can to alter the lack of public awareness about Lyme.  We have had some success at the political level, but there is sooo much work to be done.  We stand for everyone knowing the TRUE facts about Lyme.   

That's Silver and me to the left.  The gentleman inbetween us who looks like Sidney Poitier IS Sidney Poitier.  We had the privilege of working with him one day.  (Ladies: he's STILL smoking hot!)

Please take a moment to subscribe to our occasional newsletter.  It's in the Lyme-colored box on the left.  You can contact us at 818-790-7418.  We're happy to help sort out some of the Lyme issues with you, but remember we are on PACIFIC time!  (We need our sleep!)

THE LYME DISEASE CONTROVERSY

Q&A: The Lyme Disease Controversy

by Frank DiGiacomo
<http://www.vanityfa ir.com/magazine/ bios/frank_ digiacomo/ search?contribut orName=Frank% 20DiGiacomo>
June 26, 2009, 2:24 PM

under_our_skin. jpg

If there's a subject that's guaranteed to start my wife and me bickering
like Elizabeth Taylor and Richard Burton in /Who's Afraid of Virginia
Woolf?,/ it's Lyme disease. In the late 1990s, after a summer spent
covering the Hamptons for the New York /Observer,/ I was overcome with
overwhelming fatigue, blinding headaches, an acute sensitivity to light,
joint pain and, eventually, intensely creepy muscle spasms and heart
flutters that made me feel like I had a baby alien nesting in my chest.
My doctor was convinced that I had contracted Lyme disease even though
he could find no tick, no telltale bulls-eye rash, and the blood test
came up negative. (Current Lyme tests have a high false negative rate.)
After a three-week regimen of very strong antibiotics, I felt my old
self again save for the still-palpable fear that I might somehow
contract the disease again.

My wife harbors a very different opinion of my illness. She finds it
hilarious that I claim to have contracted a debilitating disease in the
posh Hamptons---especial ly since I can't produce any medical proof of my
affliction. Her reaction used to make the big veins in my forehead
throb---until I saw Andy Abrahams Wilson's fascinating documentary on
Lyme disease, /Under Our Skin,/ which opened in limited theatrical
release in New York last Friday, expands to Los Angeles today and a
number of other cities in July. By the end of the film, I understood
that my wife's skepticism was hardly unique, and, more importantly, that
I'm one of the lucky ones. Wilson, who's based in San Francisco, does an
artful and compelling job of illuminating some very dark aspects of this
disease, which, in addition to being remarkably difficult to diagnose
and treat, is a subject of considerable controversy within the medical
establishment. According to the official definition of Lyme put together
by the Infectious Disease Society of America (I.D.S.A.)-- -guidelines
that insurance companies use to determine what treatments they
cover---chronic Lyme disease does not officially exist, meaning that
Lyme specialists who insist otherwise sometimes risk their medical
careers to treat their long-suffering patients. But that's not the only
revelation raised in /Under Our Skin./ One researcher uncovers a
possible connection between Lyme and such perplexing neurodegenerative
diseases as Multiple Sclerosis (M.S.), Alzheimer's disease and
Amyotrophic Lateral Sclerosis (A.L.S.). Even more chilling is the
movie's disclosure that a majority of the I.D.S.A. Lyme panel members
had potential conflicts or undisclosed financial interests in companies
that, for instance, were developing Lyme vaccines and tests.

A few weeks ago, Wilson discussed these and other startling aspects of
his film with me. He also took issue with a March 2007 Forbes magazine
story <http://www.forbes. com/forbes/ 2007/0312/ 096.html> that deals with
some of the same doctors mentioned in /Under Our Skin/. Judging from the
film's performance over the weekend in New York, I'm not the only one
with questions about Lyme disease. According to a spokeswoman for /Under
Our Skin,/ the film sold out many of its Friday screenings and did a
very respectable $7,100 on a single screen for the weekend. Now, if I
can only get the wife to see it.

Under Our Skin-- it's OUT!

There's a review of it in today's NY Times.  READ IT HERE

I responded to it, but it was taken down, so here it is.

June 19th, 2009

1:02 pm

Rating:

See This Movie! It Could Save Your Kid's Life!

Had I seen this movie before my daughter was bitten by a tick here in Southern California seven terrible years ago and subsequently misdiagnosed by 20+ doctors, her life would be much different than it is today. She would be in college. She would not live in pain 24/7.

The job of a parent is to see to our children's safety. So we use seatbelts in the car. We don't vote on it every time we get in the car, we do it because we have been educated on the threats inherent if we don't: there are accidents, and some kids will be injured or die. It's just common sense now, though it wasn't always.

So it is with tick-borne illness. Except that we parents are NOT educated about the threat that Lyme poses. We think we know something about it, and it's not a big deal, but the little we know is mainly wrong... old doctor's tales that have not been put to rest. Hmm, why is that? Watch Under Our Skin and you'll begin to see how and why the very people who we THINK are looking out for us and our children, and in whom we place our trust, have an agenda very different than that of public benefit and safety.

Lyme is an epidemic. It's in your state, no matter what the doctor says. Your kids can be bitten and you won't know it. Your kids may have symptoms and no bulls-eye rash. Your kids may have symptoms all over the map: in fact, so many that they get labeled as whiners, hypochondriacs, attention-seekers, liars, slackers, etc. by the very people you pay to help them. And misdiagnosis and under-treatment is the norm unless parents persist in getting a diagnosis that speaks to ALL of the symptoms, (eg., fibromyalgia, arthritis, migraines, nausea, fatigue, etc), and not just some of them.

The government has fallen down on the job. I confronted a CDC official at a public event and said to her, "I know you know how bad Lyme Disease really is." And she said, "Yes, we do." "Then what is it going to take for you people who are supposed to be looking out for us and our children to get the word out about Lyme and educate the public?" And here is an instance of a government official actually speaking truth. She said, "It's going to take a lot more people getting sick."

So there it is. Disgusting.

In my family, two out of three of us have been a part of that experiment. We have "given." Would anyone reading this like to also volunteer, so that the government will proactively provide parents the known information you need to protect your children? (Well, sorry, NOT yours, because they'll be chronically ill. But other people's children, somewhere down the line, maybe.)

Of course not. Unless you want to believe the Infectious Diseases Society's spin that Lyme is "hard to get, and easy to cure," when precisely the opposite is true.

The IDSA wants and expects your faith in them. Don't give it so easily: they have not earned it, and you will see that in Under Our Skin. You as a parent want unbiased knowledge. You want uncompromised scientific evidence. You don't want a panel overseeing treatment guidelines that includes members that have patents on Lyme-related products. It's not likely to be in your best self-interest. Duh.

On July 30th, in Washington, DC, there will be a quasi-public hearing (they won't let you in, but it will be live on the internet) about changing the guidelines governing Lyme treatment, brought about by the CT Attorney General's Office. The IDSA is treating it as a pesky PR problem. Too bad for them, they have to listen to wacky Lyme patients and their equally misguided treating doctors for a few hours. But they're confident that there will be little public notice. And they may be right. They've got a huge financial war chest and Lyme patients are sick and broke from being denied long term treatment by their doctors and insurers.

Do let them get away with it! Educate yourself about how to protect your children. Go to www.lymedisease.org, or http://health.groups.yahoo.com... or www.lymepolicywonk.org for the political angle.

Bev Feldman
www.lymesucks.org

The Spread of Lyme and Biodiversity

Sometimes I think that having fewer "pests" would be nice.  But I get over it, I do know better, but I don't know the details.  This article gives a good overview of the risks of losing biodiversity.    So... read on!

Bio-diversity keeps us healthy.....

Pam Weintraub on Babesia

Senior Discover Magazine editor Pamela Weintraub reports on her experience with Babesia microti.  READ IT HERE

TRANSCRIPT: Margaret Mead Speaking in 1953 for "This I Believe"

This is a brilliant essay, one that should be read by everyone.
-- Bev Feldman

Children used to play a game of pointing at someone, suddenly saying, "What are you?" Some people answered by saying, "I am a human being," or by nationality or by religion.

When this question was put to me by a new generation of children, I answered, "an anthropologist." Anthropology is the study of whole ways of life to which one must be completely committed, all the time. So that when I speak of what I believe as a person, I cannot separate this from what I believe as an anthropologist.

WORDS OF WISDOM FROM A WOUNDED DOCTOR

I've been reading a very thoughtful book by Dr. Rachel Naomi Remen, M.D.  Even though she is an MD, she has been chronically ill most of her life with an intestinal disorder.  In Kitchen Table Wisdom, she tells stories about her life and the lives of her patients and the gifts found there.  I came to know of her by hearing an interview with her on Terry Gross's Fresh Air.  You can find the interview as podcast on iTunes.  I thought she brought something else entirely to the situation of being chronically ill.

Here are three passages that I liked a lot:

pg. 30
"...I remember thinking that this disease had robbed me of my youth.  I did not yet know what it had given me in exchange.

In response to these painful thoughts, a wave of intense rage flooded me, the sort of feeling I had experienced many times before.  But for some reason, this time I did not drown in it.  Instead, I sort of noticed it go by and something inside me said, 'You have no vitality?  Here's your vitality.'

Shocked, I recognized the connection between my anger and my will to live.  My anger was my will to live turned inside out.  My life force was just as intense, just as powerful as my anger, but for the first time I could experience it as different and feel it directly.  In that first moment of surprise, I had a glimpse of something fundamental about who I am; that at the core of things I have an intense love of life, a wish to participate fully in life and to help others do the same.  Somehow this had grown large in me as a result of the very limitations that I had thought were thwarting it.  Like the power of a dammed river.  I had not known this before.  I also knew that in its present form, as rage, this power was trapped.  My anger had helped me to survive, to resist my disease, even to fight on, but in the form of anger I could not use my strength to build the kind of life I longed to live.  And then I knew that I no longer needed to do it this way. I knew with absolute certainty that my pain was nobody's fault; that the world was not to blame for it.  It was a moment of real freedom."

TICKS: OLDER THAN DIRT?

Well, not really.  BUT ticks have been around for about 397 million years... give or take 23 million years.

QUOTE- "Our estimates indicate that the orders and classes of  spiders, scorpions, mites, and ticks diversified in the late Paleozoic, much earlier than previously reported from fossil date estimates. The divergence time estimated for ticks suggests that their first land hosts could have been amphibians rather than reptiles.  Using molecular data, we separated the spider-scorpion clades and estimated their divergence times at 397 +/- 23 million years ago."

Exp Appl Acarol. 2009 Jan;47(1):1- 18. Epub 2008 Oct 18. 
Jeyaprakash A, Hoy MA.
Department of Entomology and Nematology, University of Florida,
Gainesville, FL 32611, USA. ajey@ifas.ufl. edu

THREE GREAT THINGS ABOUT LYME IN 2008

Anybody involved in Lyme Disease is more than familiar with all the Bad News about Lyme.  We won't go there.  But in 2008 we have much to be thankful for.

1. The documentary, Under Our Skin, came out. If you are looking at this site, you need to see this movie.  Open Eye Pictures has done a great job on their documentary about Lyme.  Look to the right and click on the picture and you can watch an extended excerpt.  You can also purchase it for $35 from Open Eye.

2. Pam Weintraub published her book on Lyme, "Cure Unknown: Inside the Lyme Epidemic."  She does a GREAT job combining the story of her family with the larger story of Lyme.   A medical journalist by profession, Pam's family was beset by Lyme, and they went through the usual and all-too-familiar nightmares.  She illustrates how Lyme got to be so marginalized, in spite of being vicious and epidemic.  She is much more fair than I could ever be.  I would be ranting all the way through, so it's much better that she took on this task.

3, Attorney General of CT, Richard Blumenthal, reached a settlement with the Infectious Diseases Society of America in regards to the Treatment Guidelines for Lyme Disease.

5-01-08 Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.

Read the whole press release here:  CT AG Press Release

This is very good news for the Lyme community.  Did you realize that there has NEVER been a potential criminal investigation against a medical society in this country except for this one?  It's not perfect, but it's a HUGE breakthrough for the Lyme community.

I Apologize For Not Posting More to This Blog, and I'm Going to Be Better From Now On

     
This is us.  Don't we look really good in these pictures?  That's because they were professionally done by pro photographer Bradley Ross here in the LA area.  Lymies are generally broke, due to our health insurers not paying for our care, and the Feldmans are no exception.  With two parents who are freelancers in the entertainment business, no one has a regular paycheck or even a real job.  So we're not ever seriously thinking about getting nice pictures of ourselves.  Anyway, one day I was doing a prompting job (I have a teleprompting service -- www.starprompt.tv), and I was prompting a woman who had lost her daughter at eight years old to a condition she had from birth.  It was a very sad story. 

THE SORDID STATE OF LYME DISEASE

There's a huge problem with Lyme disease (Borreliosis) beyond the disease itself.  The path to correct diagnosis is a rocky one, riddled with false turns that will devastate your health and suck your resources for years.

If you think you might have Lyme, you'll be searching for good information, and naturally it would seem that you should turn to our medical doctors, who learn from their medical societies and the government.  It's an entirely rational thought.  But think about it: you have an underlying assumption that what they say is unbiased information and scientifically proven.  Why wouldn't they?  Isn't that their job -- to correctly diagnose you and treat you accordingly?  It is.  We thought that too.  And we were wrong. 

The truth is much more complicated. 

Much of the information doctors know is not only wrong but it can hurt you and cost you.  Why?  Because the governing body of infectious disease doctors, the IDSA (Infectious Diseases Society of America) is not interested in treating Lyme.  They are heavily involved in bringing Lyme vaccines to market.  They are the gatekeepers of research money, and it's not going into treatment research, it's going into vaccine development, which is where the money is.  Presently, they are under investigation by CT state attorney general's office for possible anti-trust violations, so we are not making this up. ( IDSA Investigation )  If they had the potential to vaccinate every citizen in the US, that's 250 million people!  It's a LOT of money at stake, especially if you own the patents!   

So let's talk about the first false turn to correct diagnosis that you are likely to take when you visit your doctor -- and let's imagine that you actually know you were bitten by a tick.  You ask your doctor to test your blood because you've read that there is a blood test for Lyme.  And you assume that it's like getting tested for HIV:  it's an accurate test with a yes or no answer.  You get the test, and it comes back "negative."  Your doctor says that it's not Lyme. 

What you didn't know is that:

1. If you test shortly after a tick bite, there is a high likelihood that if you are infected, it will not show up on any test for about six weeks.  So a test too early after the bite is not a good test.  You doctor may not know that.

2. Not all labs are created equal.  Presently there are two government licensed labs worth sending your blood to-- IgeneX and MDL.  These labs specialize in testing for Lyme and other tick-borne illnesses.  Unless your doctor is up to speed on Lyme, your blood will not go to either of those labs.   They will use the lab (often Quest) that your insurance provider covers. 

3. The first tier test generally ordered (the less expensive ELISA) is very inaccurate for Lyme at best, no matter what lab you send your blood to.  But you don't know that!  You don't know that the ELISA for Lyme is estimated to be wrong anywhere from 30-50% of the time.  It does not even come close to scientific efficacy of being at least 95% correct, yet it is the gatekeeper test!  A negative ELISA will end the question of Lyme with most doctors.  You'll be prescribed pharmaceuticals for your symptoms and if there is Lyme, it will go untreated.  This is what happens to most people.  It happened to us.

4. The Western Blot for Lyme (the 2nd tier test that you will get if you happen to have a positive ELISA) is more complicated.  It tests for bands of reactivity, which are numbered, and each band tells a story and points to something. 

For instance, Band 41 senses the flagellate tail of a bacterium and is not specific for Lyme.  However, most Lyme patients react positive on Band 41.  Many infected with Lyme ONLY react to Band 41.  It is thought that the Lyme bacterium, Borrelia burgdorferi, which is a spirokete -- meaning its a corkscrew type bug that drills into your cells and tissues -- has an interior coiled structure that is not a tail, but is like an internal tail, and this may be why Band 41 reacts. 

(The backstory: The most Lyme-specific Western Blot bands, 31 and 34, were taken out of the differential by the government when there was a Lyme vaccine (LymeRix) that came out but was eventually pulled off the market.  If you had the vaccine, you would react to those bands.  So they removed those bands from the differential.  Today, you can test positive on those bands, not have had the vaccine, and those bands will not be counted towards a diagnosis -- unless you are seeing a Lyme specialist.)

You don't know what bands the lab your blood went to is testing for.

There's a range of bands, all of which point to something specific, but with the exception of MDL and IgeneX, other labs don't test for all bands.  How would you, the consumer, know?  You don't, and your doctor either doesn't know or doesn't disclose this important fact to you.   

Here's a much more detailed explanation of blood tests: Download lyme_blood_tests.doc  

CA DEPT. OF PUBLIC HEALTH ISSUES ALERT ABOUT TICKS AND LYME

CALIFORNIA DEPARTMENT OF PUBLIC HEALTH CAUTIONS CALIFORNIANS ABOUT TICKS AND TICK-BORNE DISEASES
SACRAMENTO – Dr. Mark Horton, director of the California Department
of Public Health (CDPH), today warned individuals who are working or
playing outdoors in the fall and winter months to be on the alert for
ticks that may carry bacteria that cause Lyme disease and other
tick-borne illnesses.

“Although most people associate ticks with summer outdoor
activities, adult western black-legged ticks are more likely to be
encountered in late fall and winter,” Horton said. “With California’s
temperate climate, adult ticks are abundant throughout the cooler
months between late October and March.”

SILVER'S STORY IN HER OWN WORDS

<>

In July of 2002, Silver suddenly became very ill with a myriad of symptoms: excruciating headache, joint pain, nausea, fatigue, etc.  The many doctors we took her couldn't figure it out and all said there were "too many symptoms" -- meaning they were clueless.  Getting her correctly diagnosed was a long and expensive nightmare.  Here is a partial account written by Silver herself.  She was 13 when she wrote this.

CARRYING MOTHER'S EMPATHY TOO FAR and WHAT THE ROCKET SCIENTIST TAUGHT US

Hopefully you read Silver's Story. 

While we were at the Hyperbaric Center for her treatment, winning the Believe It Or Not Award, I stepped outdoors one day and unbeknownst to me, picked up a tick but like most people, didn't know it. 

WHO SAYS POLITICIANS CAN'T BE BOUGHT?

At an event I went to last year, there was a silent auction.  Mostly it was gift baskets of things I wouldn't want...  coffees, certificates for pedicures, stuffed animal gift baskets, just "stuff". 

And then I saw that there was a plain clipboard laying in the midst of all this, declaring "Lunch for Two with Los Angeles County Supervisor Mike Antonovich."  Minimum bid: $80.

I thought about it for a nanosecond.  Lunch with one of the Big Guys.  $80 was steep for lunch, but it meant that he'd have to listen to whatever I wanted to chat about... and I could give this guy an earful about Lyme disease in Southern California.  So I WILLED that no one else would even THINK of bidding on this, and they didn't, and I got it.

I invited Lorraine Johnson, executive director of CALDA (California Lyme Disease Association) to be the other guest. 

To make a long story short, we had the lunch.  We thought it was just going to be with Supervisor Antonovich, but it was with him and all of his deputies -- people who were in charge of education, health, parks and recreation etc. for Los Angeles County!  Ten people!  Over a great Chinese lunch, we did some serious consciousness-raising and they were a rapt audience and asked very good questions, which meant they were listening.  Out of that lunch, Supervisor Antonovich said he'd sponsor a Resolution declaring May 2006 as Lyme Disease Awareness, Education and Prevention Month in the County!

He did what he said he would do, and it happened.  It's a step.  Another step.

Click on the image to see the Big Tick!

   

The Myths of Lyme, California Style

LYME DISEASE SUCKS And so do the myths about Lyme!

Myth 1: Lyme disease isn't in California. BRACE YOURSELF. It's in California, yes, SOUTHERN California, and all states of the US. It's the fastest growing infectious disease in the country, surpassing AIDS. Forget SARS, forget the Bird Flu. 

Myth 2: Lyme always has a bulls-eye rash. DON'T WE WISH. 70% of people infected with Lyme never get a rash. Never. Yet doctors take the absence of a rash to rule Lyme out.

Myth 3: You can feel the tick bite you. SORRY. The tick anaesthetizes your skin as it bites you. You get sick. You never know it happened.

Myth 4:Twenty-one days of antibiotics will cure you. WRONG AGAIN.  A much longer term of antibiotics is needed.

Myth 5: If you test negative for Lyme, you don't have it. REALLY WRONG. The Lyme serology (ELISA) test is wrong with false negatives AND false positives up to 40% of the time! Its nearly useless. Lyme is a clinical diagnosis. A doctor who knows about Lyme says you have it, not a test.   Side note: Only a couple of labs in the US specialize in tick-borne illness testing, and they are not the labs your doctor is likely to send your blood to.

Myth 6: You can't get Lyme from someone else. FALSE. It appears that it can be transmitted in utero to a fetus. And research is pointing to sexual transmission of tick-borne illnesses. Sorry!

Myth 7: My doctor recognizes Lyme. BUY A LOTTERY TICKET INSTEAD. Most people are misdiagnosed and treated for other conditions. They are told they have: the flu, chronic fatigue, fibromyalgia, arthritis, multiple sclerosis, heart conditions, migraines, seizure disorders, chemical sensitivities, panic attacks, psychological issues, ALS and lupus.  Many are told they are chronic complainers and need to get a better sex life.

The average length of time from the onset of symptoms to the diagnosis of Lyme disease is four and a half years. Protect yourself and your family. Don't get ticked!