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IDSA hearing - message from Tina Garcia of L.E.A.P.

On the eve of the hearing in DC, patient advocate and panel member Tina Garcia sends us this message. I will be interviewing Tina very soon, so watch this blog - it will be posted for free to anyone who wants to hear directly from her what the hearing was like. Please feel free to forward the following note to any other Lyme groups who might be interested:

I just wanted to send out a huge thank you to all on Eurolyme and other groups who have shown me so much support! I am here in DC anxious to attend the Hearing!

I thought I'd write to let everyone know that the lime green ribbon campaign is being done in conjunction with media coverage of the Hearing and it is not a demonstration of any sort.

It is a way to get more media attention at the Marriott across from the Ronald Reagan Building, where the Hearing will be held. I am here and watching it all unfold and I assure you that it is an awareness campaign and not a demonstration. It is defintely not a campaign that will negatively effect the Hearing or offend the Review Panel in any way.

This is a very critical moment for the Lyme community, patients and docs. I would ask everyone to please focus strongly on the bond that we all share in this community and muster all the strength and courage we can to unite as a community. We must rise above the disagreements and conflicts that occur between advocacy groups and form a cohesive community of patients and doctors.

We must not allow our actions to be dictated by reactions to efforts that might make us stray from the path we are on. Let's unite and work together, for there is strength in numbers. United we stand -- divided we fall. We can stll hold on to the uniqueness of each of our advocacy groups, but at this crucial hour, we must be willing to work together and appreciate each other's uniqueness and admire each other's strengths and efforts to make a difference for all.

PLEASE FORWARD THIS TO ALL GROUPS AND LISTS AND DISCUSSIONS ASAP.
I AM PRESSED FOR TIME, SO IF YOU CAN ALL FORWARD THIS MESSAGE FAR AND WIDE, I WOULD TRULY APPRECIATE IT! THANK YOU!

In Solidarity,

Tina J. Garcia
Lyme Education Awareness Program
L.E.A.P. Arizona
www.leaparizona. com
P.O. Box 2654
Mesa, Arizona USA
480-219-6869 Phone
480-830-2788 Fax
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Interview with the extraordinary Dr Jones

Dr Charles Ray Jones is a man with three ordinary names - yet he couldn't be any more extraordinary in his service to chronically ill patients.

To quote Sandy Berenbaum's introduction at a 2008 University of New Haven celebration to honor Dr Jones, a colleague of his has observed that he is "an international treasure - a courageous, selfless, inspirational, and outstandingly gifted clinician who has helped thousands of the most severely ill children with Lyme disease from around the world to regain their health and their lives."

Dr Jones spoke with me about Connecticut Governor Rell's recent decision to allow doctors to treat Lyme disease, the significance of this week's IDSA hearing in Washington, DC, and about the future of Lyme disease treatment.


Listen to the interview with Dr Charles Ray Jones in our member’s portal.
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Watch the IDSA hearing live online

If you have ever had trouble getting treated for Lyme disease, or you are interested in long-term antibiotic treatment of Lyme, you probably already know about this Thursday's hearing. If you don't, then you may want to tune in.

The long-awaited IDSA hearing on Lyme treatment is finally happening, Thursday, July 30, '09. You can follow the entire broadcast live online.

Panel member Raphael Stricker, MD, an ILADS physician, is one of the doctors included in our experts interview series. Several of the healthy Lyme survivors included in our Success Stories series have included his patients. Tune in to listen to what Dr Stricker has to say.

We plan to interview many more members of the panel soon, starting with Tina Garcia, a dedicated Lyme patient advocate.

Click the link below for important information about the IDSA hearing:
http://www.idsociety.org/WorkArea/showcontent.aspx?id=14974
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Eat your (fresh organic) veggies!

Summertime means fresh, organic veggies and fruits. I'm a sprouts fanatic. They're easy to eat and digest. I've always liked them, but even more so since I've been fighting Lyme. Sprouts are just so delicious and appealing.

On a sunny day it's nice to come home from the grocery store or farmer's market and toss together a mouth-watering salad of greens. You might add in fresh ripe tomatoes, peas, shredded carrots and/or beets, and top it with a handful of broccoli or clover sprouts and drizzle on your favorite dressing. I like to crumble bits of organic goat cheese on top too. Raw foods can be beautiful to behold, and so full of zest and prana. The nicest part is that afterwards, you don't feel sluggish. Just clean and energized.

Fresh, raw food diets have been used with success to ease the pain of many chronic diseases. But your body must be at a stage where eating raw foods can help boost your vitality, and not simply give it more work to do. During an acute stage of Lyme disease, raw foods may be too harsh to digest. Before you become a raw foodie, talk with your Lyme doc. If possible, consult a nutritionist who is educated about Lyme disease.

During early or acute stages of Lyme disease, your body might not be able to handle many raw foods. However, since raw veggies are rich in enzymes, they can be very beneficial in later stages of Lyme.

Sprouts, though, are a helpful food to eat during any stage of Lyme. You don't even have to go to the store or the market for these - grow your own!

Given the right conditions, teeny-weeny vegetable seeds grow into flavorful veggies. Sprouted broccoli, clover and radish seeds can contain many times the nutrients of the mature vegetable. Broccoli sprouts are one of my favorites because they contain sulforaphane, a long-lasting antioxidant that has powerful anti-bacterial qualities.

Going raw is a personal choice, up to you and your doctors. You can always add more leafy green vegetables to your diet without going totally raw.

Veggies with sulforaphane:

Bok choy
Brussels sprouts
Cabbage
Cauliflower
Collard greens
Kale
Kohlrabi
Mustard greens
Turnips
Radish
Watercress
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Find a Lyme doctor near you


Q: What should I do? I've had Lyme disease symptoms, but the time for early treatment has elapsed.

A: Contact a Lyme literate medical doctor near you. Please go to the Lyme Disease Association doctor referrals page.

Once you're on the LDA website, click on the link for "doctor referrals." Register using your email address. Once you've done so, follow the simple directions to find a doctor near you. The process doesn't take long and the directions are easy to follow. If you need a Lyme doctor, I urge you to find one as soon as possible.

You'll be asked whether you'd prefer a doctor who belongs to the International Lyme and Associated Diseases Society (ILADS). Keep in mind that Infectious disease doctors (IDSA) may not have the knowledge it takes to treat Lyme disease, especially when it has gone beyond the early stages. Infectious disease doctors may also lack the experience that ILADS specialists can offer in diagnosing and treating Lyme.

ILADS member and Registered Nurse, Ginger Savely, has diagnosed and treated over one thousand patients with Lyme symptoms. She is confident that with treatment, you can recover from Lyme disease.

Many experts agree that if Lyme is left untreated, or if it goes under-treated, the disease can be debilitating and even cause serious threats to health and well-being.

If you need help, please use the link above to find a doctor who knows how to diagnose and treat Lyme now.

And meantime, please take advantage of the work we've been doing over the past few years, collecting Lyme Success Stories. Listen to the Success Stories here on our website. Many of them are available for free. All we ask is that you sign up for our newsletter in order to hear them. LDRD members, who help make our work here possible, have access to many more stories, and we're adding new ones all the time. These people are so strong and enthusiastic, I love listening to them. They hail from all walks of life -- young, not-so-young, men, women and children. They will help you find the inner strength and confidence you need at this point. Some of them have specific information about how they healed from Lyme. They talk about how they found their Lyme doctors, they tell which medicines they took, and some describe their nutritional plans, exercise routines, and more.

When we're sick, we need encouragement. We need to hear from other people who've been down the same road. Nurse Ginger Savely told me, during our interview, that she fully believes that people can get better, when given the right treatment, even if they've suffered with Lyme symptoms for many, many years. She sees it happening every day in her San Francisco clinic.
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"My year in HELL"

It's Friday, and I wanted to share this with you all. One our readers, Kim Jones, gave us permission to post this happy note. If you're sick, take heart and know that there are many, many people who are beating Lyme:

It has been a year since a nasty little tick gave me the disease from HELL. But I am back among the living. And living well. Feeling better than ever! Something I did not think was possible a year ago. Some days were so hopeless and I was too tired to read in bed or walk down my driveway to get the mail let alone work or go out with friends.

I dreaded the full moon and nights of restless sleep and days of endless exhaustion. The joint pain was incredible and I could not think through the brain fog to function in any normal sort of way. I will forever look back on May 2008 as the beginning of my year in HELL.

Never mind the swirl of doctors and pills and tests that we have all gone through and the endless researching and reading to find an answer. I absolutely was consumed with finding a cure - I was not going to let this ruin my life. I was absolutely glued to my computer screen searching every LD site I could find.

Then later, when Under Our Skin came out (I bought an advance copy), I watched it over and over while I cried seemingly endless tears. But I refused to allow this to happen to me. Mine is a story of strength and perseverance and just plain stubbornness on my part. Even from the beginning I made my mind up that this THING was NOT going to get me. I was going to beat it.

And I have beat it. Thanks to self-determination, excellent nutrition, LOTS of exercise, and meditative positive thinking. Also, with support from my husband and an excellent local LPN, the only one in the medical community who would listen and help me with meds and support, and a team of online supporters.

I have WON this battle. I am symptom free now for over 3 months. No meds, no brain fog, no fatigue, no rash, nothing. I really am free of this dreaded disease. I now have my life back - whoooooooppppppeeeee!
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Speak up for Lyme survey

Patient survey

Patient advocate Lorraine Johnson, JD, MBA, of the California Lyme Disease Association (CALDA) will be testifying before the IDSA review panel on July 30. This survey, which takes about 5 minutes to complete, will be used to support her speech. Your identity will remain anonymous.

Lorraine writes:
You can get more information on what is happening with the hearing by visiting the CALDA website at www.lymedisease.org and visiting my blog there by clicking news and blogs and then Lyme Policy Wonk. You can also visit my blog by going to www.lymepolicywonk.org.

Please support the good work that CALDA does by becoming a member and helping us advocate for Lyme patient rights.


If you wish, you can watch the July 30 hearing live on the internet at the IDSA website (idsociety.org).
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Dr Charles Ray Jones: upcoming interview

Coming soon: a very special interview with renowned Lyme expert Dr Charles Jones of Connecticut. Dr Jones celebrated his 80th birthday last month, and he continues to treat chronically ill patients. His life and work is a testament to caring and courage.

Here are a couple of links to help you read up on Dr Jones:

Dr Charles Ray Jones homepage
The State of Connecticut vs. Dr Charles Ray Jones - A Hangin' In Hartford - article by Rick Vassar, April 17, 2007

Please note: This interview will be posted for free access to everyone - not just LDRD members. As always, we thank our members for your support, which enables us to keep conducting and posting these interviews.
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IDSA submits letter to Waxman

Things are heating up in Washington DC as the July 30 hearing approaches.

Below is an excerpt from a letter written on June 25, 2009 and sent by the IDSA to US Representative Henry Waxman, Chairman of the House Energy & Commerce Committee. In it, the IDSA makes clear that it opposes the bill regarding Lyme disease treatment (H.R. 1179), which was recently reintroduced in the House of Representatives.

Here is a partial excerpt:
We believe it is important that Members of Congress who are considering co-sponsorship of H.R. 1179 be fully apprised of IDSA’s view, which is aligned with the broader medical and scientific communities’ view, that the long-term use of antibiotics for the treatment of Lyme disease is unproven and potentially harmful to the patients being treated and to the public’s health (due to the potential creation of drug-resistant organisms).

Further, it is IDSA’s position that no reliable evidence exists that supports the designation of Lyme disease as a chronic disease. Two recent reviews -- one published in the New England Journal of Medicine (N Engl J Med 357:14; October 4, 2007) and the other in the American Journal of Medicine (2008) 121, 562-564 -- give evidence-based assessments of Lyme disease diagnoses and the recommended treatments which substantiate our position.
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Where are the articles on Lyme disease?

Dr David L Katz, a medical doctor and blogger for Prevention Magazine, wrote this reductive "preview" of Under Our Skin last year. On the Prevention site, I posted my response to his claim that there is no such thing as chronic Lyme. In his article, Dr Katz admits that he hadn't yet the movie, yet he already had strong opinions about it. I went searching for his post this morning, but it has since been removed. There is very little trace of Lyme disease mentioned in his health blog. I am not singling out Dr Katz for criticism here. However, I find it curious that a popular magazine on integrative medicine doesn't seem to be concerned with Lyme disease anymore.


Here is an excerpt of his 4/25/2008 blog post, which he titled "From the (sub)Lyme to the ridiculous":

A Yale colleague and leading authority on Lyme Disease, Dr. Durland Fish, brought to my attention a documentary film, to be shown at the Tribeca Film Festival in New York, highlighting the devastation wrought by chronic Lyme infection.

The only problem with that is...there is no such thing.


The best available science indicates that chronic infection with Lyme does not occur. There certainly can be, and are, chronic symptoms after Lyme infection- but that is very different from chronic infection. Consider, for instance, that after a bout of polio, some people have a permanent disability. That does not mean they are permanently infected with poliomyelitis- we know for a fact they are not.


There is, unfortunately, a cottage industry in treating "chronic Lyme." That treatment often involves lengthy courses of antibiotics, long after evidence of active infection is gone. Some clinicians are probably engaged in this practice in a genuine, if apparently misguided, effort to help. Others- a far more serious transgression- may be exploiting patient desperation for profit.


As far as I can tell, the documentary on chronic Lyme will be in equal parts compelling, and misleading. The terrible plight of the patients profiled will, and should, tug at your heart strings. But the implication that these are cases of chronic Lyme infection is at odds with the scientific evidence.


Here is my response:

Unfortunately, the vast and often seemingly disconnected array of symptoms, which can include rheumatoid arthritis, arrhythmia, memory loss and crushing fatigue, often lead patients from specialist to specialist, who never choose to investigate whether an underlying bacteria, treatable with antibiotics, could be at the root of their patients' problems. These clinicians could as well be "exploiting patient desperation for profit." Countless people have been misdiagnosed and under-diagnosed with Lyme disease, subscribed medicines that replicate the Lyme bacteria, causing the patient further, and even permanent, harm.



Comparison of the Lyme bacteria, Borrelia burgdorferi, with poliomyelitis proves very little. The spirochetal bacteria that causes Lyme disease is able to evade the body's immune system, and it is scientifically well-documented that tests for Lyme infection are often inaccurate.

Perhaps a "cottage industry," as you call it, has developed for a good reason. People are suffering. Many doctors are unwilling to consider Lyme infection as a cause of their pain. Numerous medical researchers and physicians recognize that gaps exist in our current understanding of the Lyme bacteria. More scientific studies and more medical research is necessary.
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