Tuesday, April 17, 2012

Dr. Phil features Lyme on his Show!!



Last Friday, The Dr. Phil devoted an entire segment to chronic Lyme, using several minutes of footage from the disturbing but powerful documentary, UNDER OUR SKIN. In a behind-the-scenes chat with staffers after the show, Dr. Phil says a key issue was left out of the "Deadly Consequences" Lyme segment: "The political-financial-insurance aspect that impacts diagnosis." Could not agree more myself.

I don't watch Dr. Phil personally, but I think he did a GREAT job with this segment: http://www.youtube.com/watch?v=reqyYSAFb9I. One of his staffers has had Lyme for years and had her Hickman port (much like the picc line I had in my arm for 2 years to deliver IV antibiotics) in while working. I have no doubt watching her opened his eyes to the reality of this disease that some people, particularly IDSA (Infectious Disease Society of America) doctors, claim is MADE UP and all in patient's heads. I think Brooke Landau, a San Diego newscaster and former model who survived a 13-year battle with Lyme Disease, did an excellent job speaking up for Lyme patients. Her unbelievable triumph has been featured on the Today Show, Good Morning America, Discovery Channel, Extra, Fox 11 News, and news stations nationwide.

I believe some in the Lyme community were upset at the IDSA doctor that was featured on Dr. Phil, and though I too found that doctor's comments deplorable, I think the featured guests - patients and a Lyme-literate doctor - did a great job rebutting his comments.

The tide is turning, and more and more people, press, practitioners, and policymakers around the globe are becoming aware and educated. As the epidemic continues unabated and often unrecognized, I am happy to see Lyme advocates' commitment to persisting to create change and HOPE for hundreds of thousands if not millions of people suffering from this disease. Despite the relative lack of movement in this time by the official bodies of the IDSA and CDC, as patients are educated--one screening at a time, there's no turning back. The power of media coupled with the power of the people is working...

I remember sitting in my bed years ago, completely disabled, imagining what I could do and the community could do to get mobilized around this hidden epidemic...I feel we have made so much progress, but there is much more to be done...

I plan to write a book on my experience, more on that later...more on my experience and treatments in my blog later...I apologize to those of you waiting for the update on my treatments, but I have had a number of unforeseen circumstances (some health-related) come up the last 3 months that have prevented me from updating my blog...I promise it IS coming!

*Note, the documentary, Under Our Skin, is now on Hulu. Tell your friends and family they can watch it online!

Friday, April 6, 2012

INANNA HOUSE's FIRST FUNDRAISER

Reposting a Post from Mara Williams, Lyme literate NP at Gordon Medical Associates in Santa Rosa. I am on the Board of Inanna House, an incredible new nonprofit she started. More about Inanna House here.
http://puttinglymebehindyou.wordpress.com/2012/04/04/feedback-on-the-inanna-house-fundraiser/

I was not well and unable to attend the first fundraiser, but copied the Feedback on the Fundraiser post. I bolded much of Dr. Eric Gordon's (a brilliant LLMD) speech. It is incredibly helpful language to explain to others WHY chronic Lyme and TBDs (tick borne diseases) are not addressed by modern medicine and why the treatment is so complicated. Feel free to share.

Putting Lyme Behind You
Questions and Answers with California Lyme Doctors


Feedback on the Inanna House Fundraiser
Posted on April 4, 2012



Running Rabbit Ranch and Vineyard

The first Inanna House Fundraiser was an amazing success. We were so honored and proud to have had the opportunity to share our vision with so many supportive people. The day started off chilly, but as the guests started to arrive, and the room began to fill, the abundance of loving hearts and hopeful souls warmed the room.

Inanna House Founder Mara Williams, Dr. Eric Gordon, and author of Out of the Woods: Healing Lyme Disease–Body, Mind & Spirit, Katina Makris were the featured speakers. Mara Williams spoke of her vision of Inanna House, and where it originated.” These patients are so marginalized and mistreated in the conventional medical system. We want to provide a supportive and safe place for those with chronic Lyme disease to receive treatment while integrating the best of all health modalities to achieve optimum results for each patient.



Mara Williams, Eric Gordon, Katina Makris

Dr. Gordon spoke of Lyme disease and the need to look at each patient individually, and how Inanna House would allow for this. He shared some of the notes from his talk:

You are here so you know this is important.

If this project is to be realized, to be more than a dream, it is going to take a series of small and large miracles and some wonderful energetic connections.

When Mara first spoke to me about her vision for a place to care for people with TBD (tick borne disease), I knowingly smiled and rolled my eyes. I have heard many plans of and been involved in some attempts at delivering comprehensive care to people in the past, and had seen them all fail when the money or energy ran out.

Mara was ahead of me in planning, she knew she needed an endowment. I knew the sum needed was large and so wished her luck. I realized that instead of discouraging her, my words just helped her focus and she came back with the breathtaking sum of 25 million, and instead of giving up she went out to start making it happen. That is when I got interested in being involved.

In order to succeed we need to attract lots of donors and to do that people need to know why this is so important. And why many well meaning physicians will shut you down when you mention the need to help those with chronic Lyme.

I am going to give you a brief overview of what is special about the needs of these patients and why most doctors don’t get it. There are lots of ways our bodies can be ill. Why do those with chronic Lyme, or as I like to call it, chronic complex illness, need their own place? Why isn’t the standard hospital and rehab center good enough?

Hospitals have slowly begun to realize that people do better when there is some attention to the physical and emotional needs of patients and they do try to provide care above the utilitarian basics. There are some hospital-like settings in Europe and Mexico that offer something similar to what Inanna House is hoping to do. These still don’t come close to the inclusiveness that is part of Mara’s vision. They are fairly expensive and generally have a well defined approach to healing that will serve some, but will not help if you don’t fit their paradigm.

If this was just a dream to give better treatment to people with chronic TBD it would be important, but what should be understood is that without facilities such as Inanna House many people will not receive appropriate treatment.

They will suffer and some will die.

Wealth almost always gets you better care, but usually even those without resources get the basics in America. NOT SO WITH LYME. Even the wealthy get neglected when they have chronic Lyme disease. The failure of the medical system to comprehend chronic inflammatory illnesses that fall outside a few well defined diagnostic boxes is amazing. It is a product of our current medical and scientific educational system.

Factory medicine is designed for and is brilliantly effective in the acute stage of most illnesses. Think war injuries. That’s where big intervention medicine has its roots. Asclepius tended the Greeks at Troy before he was made a demigod – this is good stuff – it will save your life. The miracles of modern medicine are mostly based on battlefield medicine. Not many vaguely healthy people die of infections anymore- that used to be the main cause of death. Same with major injuries – get to the hospital and even if you are fairly mangled they can put you back together. Our hospitals were developed on the strict hierarchical structures of the army. The biggest change is that for awhile the doctors were the generals and now the accountants and statisticians are.

Where modern hospital medicine shines brightest is when people are in critical condition or suffering from acute illness or trauma, medicalese for “it just happened.” With an acute appendicitis the hospital and surgeon is a good bet, but they are useless for preventing the problem and not much help for recovering well.

With acute Lyme (acquired within the 6 weeks), it often responds quickly to oral antibiotics and probably herbs, as well. In many people their own unaided immune system will do the trick. But many people are not diagnosed with Lyme within 6 weeks of being bitten. The tick is not seen, symptoms don’t develop, or they are not specific enough to cause suspicion of Lyme disease. The disease is there, but no one notices it yet, or at least it is not identified. If the person’s immune system is not strong enough to keep the infection under control, or another stressor leads to the infection coming out of hiding, it is already well entrenched.

When we get past acute Lyme disease to Lyme disease that has been around for 6 months and more – we are now in the land of chronic Lyme.

Black and white.

Chronic Lyme is not the land of black and white diagnosis or treatment protocols. Tick borne diseases when they persist don’t fit the military model of health care at all. This is where patients fall through the cracks in the current health care system. Because the illness is not understood, patients are marginalized, stigmatized, mistreated, or left untreated at all.

Every patient is different – there are people who will respond beautifully to IV antibiotics and others who will crash and burn.

What is right for one is poison to the other.

This is one reason chronic Lyme is poorly understood.


Now is when Hygea – healthy living and health promoting environments are needed to balance the Aesclepian modern hospital. This is about balance- we need both acute intervention and supportive care- which is more important depends on the situation and the individual patient. With Inanna House, we are offering both.

Katina spoke about her personal journey with Lyme disease and how she found hope and healing using Homeopathy. After the lectures the floor was opened for questions, and there were plenty to go around.

Feedback from a Lyme patient who attended the event:

Oh, wow. It felt so good to be surrounded by such incredible human beings! The energy was so positive and supportive in the direction Inanna house is moving in with regard to treating Lyme Disease. The speaker panel was down to earth and spoke with such heart. Hearing Mara and Katina’s stories moved me to tears. They have such courage, and conviction. I know a lot of us have similar life experiences with having Lyme disease. It was held in the place where the wine tasting bar was. Beautiful knotty pine walls made it a cozy & inviting atmosphere for me. Thanks again for your part in helping me get there.
- Rayeanna

Inanna House is so thankful for all those that pulled together to throw an amazing event. The food and wine were delicious, the speakers were knowledgeable and entertaining, and the guests were fun and encouraging. Inanna House is proud to be part of the Lyme community.

Plans for the next fundraiser are already in full swing. If you would like to help out and get involved, go to www.InannaHouse.orgto contact us, we would love to hear from you!




Inanna HouseInanna House is the vision of Mara Williams NP. She sees it as an oasis of peace, health, and healing for those with chronic Lyme disease. Inanna House will be a residential facility for those who are debilitated by chronic disease, and in need of intensive therapy. The treatment would be designed to address all aspects of healing, including the physical, emotional, mental, spiritual, and energetic. Mara is the author of Nature’s Dirty Needle: What You Need to Know About Chronic Lyme Disease and How to Get the Help To Feel Better, the parent of a chronic Lyme patient, and a health care provider at Gordon Medical Associates.

Dr. Eric Gordon has established Gordon Medical Associates as an internationally recognized center for the treatment of patients left out by the conventional practice of medicine. “My deep respect for the individuality of my patients is the heart of my practice.” Dr. Gordon knows there is an interwoven complexity to these illnesses. There is a layering of the body’s adaptations to environmental toxins and infections from pathogens that is unique to every person, depending on their genetic susceptibility, organ vulnerability, toxic exposures, medical history and life circumstances. The body’s various biological systems – immune, endocrine, neurological, gastrointestinal and so on – influence each other and are influenced by each other, both in the development and progression of illness, and also its resolution.

Katina Makris is the author of Out of the Woods: Healing Lyme Disease–Body, Mind & Spirit. At the peak of her career, Classical Homeopath and health care columnist Katina Makris was stricken with a mysterious “flu”. Only after five years of torment–two completely bedridden–and devastating blows to her professional and family life was Katina’s illness finally diagnosed as Lyme Disease. But diagnosis was only the beginning of her journey toward healing. Katina Makris’ vivid story offers practical information for diagnosing and treating the bacterial invasion, as well as powerful guidance for mending the broken spirit.