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!

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.

Happy 1st Birthday, PICC LINE!!! Happiness and other tales from the land of PROGRESS

Written on March 1, 2011...

It’s weird how the majority of my life used to be consumed by darkness. Not run of the mill sadness, but dark, abysmal, nebulous, I don’t want to live anymore-darkness. Hours or days or weeks of unending despair, hopelessness, like every morning was a new look into my very own dark tunnel with no light. None. Not even a flicker of sunlight.. Anger, hatred of my life, jealousy of all the other people my age around me doing what I should have been doing for the past 5 years. Anger at my situation, living with my parents for so long and fighting about the disease that ravaged my body and mind, the treatment of my disease, how to pay for my treatment. Loss, victimization, HOPELESSNESS, and HELPLESSNESS.

It’s weird because, now, the majority of my life is consumed by happiness. Even when I was in the emergency room for 8 hours a couple weeks ago (to rule out a picc line infection), I was HAPPY. I was exhausted and feverish and delirious but grateful for experiencing this umpteenth ER visit because it was the FIRST time I had experienced it from a place of happiness, peace, calmness, and above all, FAITH. That inner knowing that everything would be ok, no matter what. I was ok and didn’t need someone to tell me I was OK. I knew it. I don’t just OK mean OK at the ER last night, I meant in general with this long battle or journey with Lyme over the past 5 years.

What’s weird is that sadness, or emotional discomfort, is actually a strange feeling! Yet it was part of my existence for so long. This is SUCH wonderful news! The last 2 months have been by far the most progress I have made over the last 2 ½ years of treatment. So with that,

HAPPY 1st BIRTHDAY to my PICC LINE! (What's a picc line? Go here).

Exactly 1 year ago today, I was pretty nervous to go to the hospital and have a peripherally inserted central catheter (picc line) placed in my chest and come out through my left arm. My 4-year old niece, Harper, calls it my ‘lollipop’ because that’s what she thought it was when she first saw it. God I love her! Who thinks a lollipop is taped on the inside of your left arm?? Harper does...well she sees candy everywhere she looks. Oh to be inside the eyes of a child again...I digress.

So, my picc line is basically is a tube that lives inside a vein in my body and goes from the outside of my left arm through my chest to the tip of my heart, where it can distribute intravenous medication quickly for the most potency. I infuse it myself daily via IV pole or fanny pack (oh yes, I haven't lost my sense of fashion with this disease). My picc line stays in til it can no longer, and then I may need to get a new one. But I'm going to make this one last for the entire treatment. I just know it!

Most people don't have a picc line that lasts a year. Or longer. But I wouldn't consider myself most people. I am extremely meticulous about keeping it clean and taking care of it! Having this device in your body takes a lot of getting used to, not being able to get that arm wet, or carry more than 5 lbs. on it, keeping it sterile, etc.

But it has ALL BEEN WORTH IT. Intravenous treatment has been so life-changing. The treatment of this disease has been gruelingly painful – I have enough past posts that go into some detail of the chemotherapy-like torture it induced for years. But now, I can finally reap the rewards of all that treatment. I am still doing daily IV infusions, but I love my picc line and all the progress it has brought me. From November 2010 onwards, I just feel like I've been on an upward spiral. Sure, there are some rough days, but that comes with the territory of infusing toxic drugs into your body to kill off an infection that doesn't belong there!

I’ve done so many amazing things in the last 2 months, that may seem meaningless to many readers, but are massive triumphs for me as most of my friends know. I remember starting treatment in late 2008 and my friend Ally literally holding my whole body up like an old lady, walking arm in arm with me to take me across a short stretch of Golden Gate park to get to the bathroom. It was like climbing Mt. Everest. I considered getting a walker or buying a wheelchair at that time so my friends could take me outside. I never did, and am glad I didn’t. Just a few weeks ago, I walked about 35 minutes around the Botanical Gardens (pics from my walk in this post) in Golden Gate Park (pictures attached to this post) by myself and had the most amazing experience.

I walked in the Gardens not only for 35 minutes,but AFTER driving myself to a few appointments, and doing a few other errands that day. Rewind a couple years back, if I made it to Walgreens for a 20 minute outing once a week, I was lucky! The day I walked through the Botanical Gardens last month was magical for many reasons:
• I have never walked through them despite living in San Francisco for 7 years
• The Gardens are beautiful, it was sunny and 70 degrees in the middle of February
• I was just happy!

I wish I wrote right after I walked through the Gardens because the experience is one I will NEVER forget. They say you get a new lease on life after a debilitating illness or experience. It’s true. I walked through that garden like Alice in my own Wonderland, bright eyed and dreamy. I had a smile across my face that hurt my cheek muscles because it wouldn’t go away the entire walk. I sat at the Japanese Garden and did some meditation, and then I walked throughout the Gardens like an alien who just landed on Earth for the first time. The trees, the cherry blossoms, the flowers, the gorgeous gardens right in my own backyard (I realize how lucky I am to live in San Francisco almost every day), everything was SO INCREDIBLY beautiful. (I saw candy everywhere, just like Harper. This illness has been such a gift in seeing the world through new eyes). The people who passed by me must have thought I was smoking something SERIOUS. I was high on life!

Feeling life in my body again, feeling life-force-energy coursing through my veins...after being locked to my bed and complete debilitation for years was AMAZING. Ok, so the force wasn’t strong enough to get me on my mountain bike or working yet, but I could see those realities on the horizon. I didn’t know HOW I was going to get from walking the Botanical Gardens and running a few errands to one day mountain biking, rock climbing, surfing, volunteering, working full time as a human rights lawyer, and socializing again, but I just KNEW it was going to happen.

Wayne Dyer always says you don’t need to know HOW to get from point A to point B; you just need to believe it is going to happen.

So many Lyme patients (and I am sure others with illnesses) wonder constantly HOW they are going to get better. HOW am I going to be able to walk 35 minutes when I can barely make it up my parents’ 20 foot driveway, I remember last summer? But look at me now! The process of improvement was NOT linear. Ups, downs, one day walking and going on a date and the next in my parents’ house having a seizure and having my mom feed me while I cried hysterically. No rhyme or reason and our brains want to know HOW. I say – don’t worry about the how. JUST BELIEVE. What the mind believes, the body achieves. If you can imagine it, it can happen.

Anyways, I digress, as usual. But, TO WHAT DO I ATTRIBUTE ALL THIS PROGRESS? (Most of my friends have asked me this)
• My picc line – my IV treatments are working, the longer that I treat, the better I get
• Moving back to San Francisco and living in a wonderful, good energy house with 2 amazing roommates; living on my own and slowly reintegrating into parts of my old life and being surrounded by my friends, community, peers (instead of living in a suburban house attached to an IV pole with only my parents and a TV to talk to)

Of COURSE, the combination of naturopathic, homeopathic, and holistic treatments (chi kung and energy healing, acupuncture, meditation, visualization) that I do are ESSENTIAL. My meditation and gratitude practice, as well as learning about happiness science have been INDISPENSABLE. See Dr. Aymee Coget's Happiness Science website for more info.

Boom! Secret to my success…for everyone it is different. I had to let go of SO much anger, sadness, frustration, and fear to get to this point. Without that, I would still be very ill. I have done a lot of work on myself, I’d venture to say more than many people do in a lifetime. But I had the luxury (I can call it that now) of almost 5 years to be with myself and have no outlet and no place to look other than inward…it’s pretty damn hard but it was worth it.

With that, I’ll end with a poem that was just sent to me:

Suffering is a treasure, for it conceals mercies;
The almond becomes fresh when you peel off the rind.
O my brother, staying in a cold dark place
And bearing patiently the grief, weakness, and pain
Is the Source of Life and the cup of Abandon!
The heights are found only in the depths of abasement;
Spring is hidden in autumn, and autumn pregnant with spring.
Flee neither; be the friend of Grief, accept desolation,
Hunt for the life that springs from the death of yourself.
~Rumi

For those of you who know me, I am a spiritual person, and I ADORE Rumi. One of the most insightful poets in history. This poem described everything I went through and continue to go through, but thankfully, I am at the part where I am ‘springing from the death’ of myself. I didn’t have to hunt for this life as the poem says; it came to me. In a way, I am lucky that I was stripped barren of everything for I had no choice but to shed everything and see life anew. I feel like I have grown the wings. Literally the caterpillar is transforming into my butterfly.

The beautiful view from our window....how can you NOT get healthy looking at that everyday?

INSURANCE UPDATE: As most of you know, Blue Shield stopped covering my monthly IV bills (roughly $3,000/month). They covered NONE of it for 8 months and then covered about 45 days after CBS/KPIX did a piece on me and my battle with Blue shield. Then they stopped and I'm back to medical bills of $5000+ per month (IV bills plus doctors, etc...) I have appealed numerous times to the state and insurance boards with no luck. Years of fights with insurance companies and over $150,000 in out of pocket medical costs later, my friends have decided to throw me a fundraiser since I've been denied disability and my dear old parents have not much left to support my Intravenous drug habit (aka my life-changing intravenous Lyme meds). My dear (pregnant and working) friend, Yael, is helping me spearhead the fundraiser - SAVE the DATE - Thursday, May 12th for Monapalooza at 111 Minna! More details to come. 111 Minna has donated the space along with DJ Sam Isaac, who will be spinning that night!

Yael and her husband, Eli, took the picture above and photoshopped it. We'll be using a similar shot (but not this one) for the invite for Monapalooza. The ticket website is up! http://www.brownpapertickets.com/event/166958

More Lyme in the News

2 stories I'd quickly like to bring your attention to:

(1) http://www.youtube.com/watch?v=hiUNBILaGuE&feature=share These stories need to be told so that awareness grows beyond the grasp of the IDSA and the current health care system...This can be prevented!

(2)VERY alarming statistics that ALL people and especially DOCTORS should know, from the National Lyme Disease Memorial Park Project. I think most of us in the Lyme-literate community know these to be accurate, but it would be great if you could spread the word to your friends and non Lyme-literate doctors. Link with references (you know, to show those skeptical doctors and even the public) at:
http://www.lymememorial.org/National_Statistics.htm


Lyme disease has surpassed AIDS as one of the fastest growing infectious epidemics in our nation, with a cost to society measured in the billions of dollars.

The Centers for Disease Control (CDC) surveillance case definition was developed for national reporting of Lyme disease; it is not intended to be used in clinical diagnosis.


Reported cases:
Lyme Disease Cases as Reported to the CDC 1980-Current (02-07-10): 381,552

Actual Cases:
Using the CDCs own under-reported standard of 10 fold: 3,815,520

* In the United States, requirements for reporting diseases are mandated by state laws or regulations, and the list of reportable diseases in each state differs.

* Disease reporting is likely incomplete, and completeness might vary depending on the disease. The degree of completeness of data reporting might be influenced by the diagnostic facilities available; control measures in effect; public awareness of a specific disease; and the interests, resources, and priorities of state and local officials responsible for disease control and public health surveillance.

* As reported by the CDC, 60 to 75 percent of patients with Rocky Mountain Spotted Fever receive an alternate diagnosis on their first visit for medical care.


Vector and Tickborne diseases found in The USA listed on the website/link above.
____

Note, I am not trying to be a Lyme alarmist. I don't like when people do that. I especially am trying to move away from having Lyme Disease as my identity since I feel I am past it (for the most part, will explain this soon in a post!).

This post is merely to let people understand how serious this disease is. I was just in New York at the United Nations for an incredible conference (more on that later) and the woman I was staying with grew up in Long Island (NY being a state where Lyme is quite well-known by much of the general public & medical community) and she had no idea what Lyme disease was or that it was passed by a tick!

Because spring is approaching, I want to remind EVERYONE to be cautious when outside. Again, no need for massive paranoia because I think fear in your body will feed any illness. BUT I went through six years of hell and many of you reading tihs have gone through and still go through a kind of physical and emotional pain from a this disease that most people will never experience. So please protect yourself and your loved ones when you go outside, in ANY part of the country, especially in the woods/hiking. Because I react to chemicals, I use eucalyptus oil (about 30 drops) mixed in a bottle of organic grapeseed oil) and put it all over my body/clothes/hair/blanket/shoes when hiking or sitting on grass. It's natural and repels ticks very well. This was advised to me by my doctor in NYC; the one who allowed me to tremendously improve just over the last 7 months.

Another one just popped up!
The doctor diagnosed chronic Lyme disease, but many experts say it doesn’t exist
http://www.washingtonpost.com/national/health-science/the-doctor-diagnosed-chronic-lyme-disease-but-many-experts-say-it-doesnt-exist/2012/02/06/gIQA4aMHtR_story.html?wpisrc=emailtoafriend

A Post from Mara: Supporting People Who are ill and Surviving it Intact

Supporting People Who Are Ill and Surviving It Intact
Posted on February 20, 2012

Preface: I recently befriended a wonderful Lyme-literate practitioner who treats very ill Lyme patients up in Santa Rosa - Mara Williams. She works with one of my doctors up there at Gordon Medical Associates. She also has an adult daughter who is completely disabled by late-stage Lyme (much like I was). I was honored that Mara asked to put my story in her book, "NATURE's DIRTY NEEDLE", the proceeds of which will be going to fund an idea that Mara (and I'm sure many in the Lyme community hold): a holistic treatment center/house for Lyme patients, to be named INANNA HOUSE.

I also am honored that Mara asked me to be on the Board of Director of Inanna House. The website for this treatment center/house is currently in progress, but some info is here: http://voyaginglyme.blogspot.com/2011/10/vision-for-new-paradigm-in-health-care.html. The center will have a team of Lyme-literate doctors running the protocols, complete with IV nurses to help patients get started on IV treatment, a psychologist, reiki, naturopaths, holistic healers, and doctors who will check everything that is often missed in treating Lyme patients - hormones, heavy metals, parasites, gut dysbiosis, detoxifcation and methylation pathways, etc. The idea is grand and will require a LOT of money. We will start fundraising for it this year (in fact, Mara has one fundraiser set up in late March).

I truly believe we can create this place for Lyme patients to come (where patients pay what they can afford on a sliding scale, not the full price that bankrupts so many of us) with collaboration, determination, and serious fundraising. This is no light operation: it will take MILLIONS of dollars, but it is necessary. Lyme Disease NEEDS to be brought to the attention of EVERYONE as it affects EVERYONE, but most painfully the sick and the loved ones of these patients. Please buy a copy of Mara's book as a resource and know the proceeds go to Inanna House. A more detailed explanation of her vision for Inanna house is in the back of her book as well!

The reason I mention my relationship with Mara is that I recently confided in her during a breakdown, in which my doctor wanted me to do more treatments to continue repairing the damage that was done by years of Lyme and treatment, and I had no money to pay for it. I already have $30,000 of 'new' credit card debt from the last 6 months of treatment. My bank account overdrafted and I maxed out all my credit cards. My parents were furious. Mara offered to write a post that might speak to my mom (and others' family members); I told her my mom was a tough cookie. She grew up in poverty in India, and asking my parents to go into more debt for me was understandably a difficult ask. It is my health after all, but they have taken out of their retirement funds (they are both 70) for me many times.

I sent Mara's post (below) to my family, and my mom IMMEDIATELY changed her mind. She said she would take money out of her retirement funds for me. I felt so guilty; how could I put my parents through more of this after 5 years? But she knew that it was the only way to help me (without me claiming bankruptcy) to get to 100% healthy, not just 70 or 80% where I mope around and cannot really work full-time. My mom is not an easy person to sway. She is tough and I felt so grateful that Mara's experience as a practitioner AND a parent/caretaker was enough to open my mom's eyes to the continuing costs, emotional and financial, of caring for a patient who has or even had Lyme. Thank you Mara for helping my family understand. I am incredibly grateful for parents that would do this for me, despite our constant fights about the toll this disease has taken on my family....thank you Mara. I know my parents have limited funds in their retirement account and also have maxed out their credit cards paying my medical bills, so we are running out of options...but I believe where there is a will there is a way..

Maybe Mara's post below will help one of your family members or friends understand what you or a loved one are going through. You never know...So I'm reprinting her post with her permission.

Supporting People Who Are Ill and Surviving It Intact

by Mara Williams

As a Lyme literate practitioner and as a mother of someone with CLD (Chronic Lyme Disease) I want to share some insights I have gained in the last two years. Amanda has had active disease since she was 15. She is now 37. We have been treating her for almost two years. Before I became Lyme literate, I was like any other family member frustrated by the incredible variety of symptoms Amanda complained about. I kept telling her to get help for her emotional issues and to get on with her life. As a “knowledgeable” health care provider I just couldn’t put the array of problems together into a diagnosis that made sense. Amanda would sometimes rage, literally, with anger that was scary. She would get panic attacks and these increased in intensity and frequency as the bugs became further entrenched in her body. Antidepressants were ineffective. Amanda would complain of severe pain, total body pain, joint pain that would migrate, hip pain that made her feel like her bones were breaking, muscle pain, stomach pain, abdominal cramping, and headaches. Wow! It was overwhelming to hear about this and feel helpless to help. She has had horrific stomach issues and would throw up often and feel nauseous constantly. I attributed these symptoms to her inability to resolve her emotional feelings. Yet I believed she needed psych help to get over the pain, that these symptoms were related to the trauma of the rape she experienced at a young age. For many of her family members it was Amanda crying wolf over and over again. Her emotional lability pushed people away as did her rage. I was the person the rage was directed at mostly and eventually I just wanted to disengage from it all. I did not make the connection of Lyme until I became Lyme literate and then everything she had been saying for years made sense.

Initially, I felt guilt for not believing her and helping her to find help. Fortunately we have so much guidance now. But when we had to interact with the current health care system I thought that because I was “one of them” they would believe what she was experiencing, listen, and help. I was foolish to believe this. The disconnect between IDSA (Infectious Disease Society of America) guidelines and ILADS (International Lyme and Associated Disease Society) guidelines rang loud and clear. I became the drug seeking, interfering mother and my gravely ill daughter became a psych case.

Amanda lived about a mile from us at the beginning of treatment. As I have written before we had a hellish year of 17 ER visits and 7 inpatient hospitalizations before I took her home and started treating her. My husband and I give her medicine every four hours around the clock and have for over 6 months now. She gets IV hydration, nutritional support and antibiotics. We prepare her food, do her laundry, help her with personal care, and are helping to raise her 12 year old daughter. In-between all this we work and make time for our relationship. Hundreds of thousands, probably millions, are doing this across the globe. Imagine the impact this is having on the global economy, as well as the emotional costs for those involved.

The financial costs of treating CLD physically run into thousands of dollars a year and can go on for several years. People lose their homes, their jobs, their relationships. Insurance companies refuse to pay for something that “doesn’t exist.” The burden of this is great and those that have no resources suffer for years. Many simply give up.

For those with the disease, healing on all levels is necessary. This encompasses not only the physical but the emotional and spiritual. The disease is a message to change the way they have been living their life. As Katina Makris states so eloquently in her book, Out of the Woods, ” The more debilitated and stricken people are, the more time has been created in their lives for reflection and realignment with their life dreams and purpose. It’s not random that those who have the most to offer the world – those who are working hardest and have the most altruistic attitudes – can get hit the hardest by this illness as they push themselves so hard, with little self-recognition. We must learn how to love our very selves with true compassion, through the tender and tragic mercies of this insidious and erratic illness”. This aspect of CLD is as critical to address as the physical. The infections will not resolve without doing this work.

I believe this applies to those of us that care for their loved one as well. It is a consuming experience that requires surrender to each moment to avoid burnout that can come with care-giving. The rhythm of each day is dictated by the needs of one person and it can be overwhelming. Some family members walk away when they decide they have done enough. Many choose to believe the mainstream hype that CLD doesn’t exist.

But for those of us that are able to remain steadfast, hold love in their heart, the reward of watching health restored is amazing. It is worth every moment of exhaustion and frustration. I get to assist someone I adore in her transformation; and, like a butterfly coming out of her cocoon, I am witnessing my child coming back to life. The process is slow, agonizingly slow, but each small step is a gift. One of my mantras is “God gives nothing but good, either gifts or lessons, and really, they are the same.” Another manta is “Everything is perfectly manifesting.” This reminds me to embrace the moment and learn so that I can shift my consciousness ever higher, and return to a place of peace and acceptance. Those who are desperately ill with CLD need their loved ones to be present and whole. Like the birthing of a child, a woman is alone with her experience of labor, yet she needs support while going through it. So does someone who is chronically ill, frail, weak, exhausted, and in severe pain. My daughter, who is so ill, is the same being she was before she became sick, working to heal from an all consuming disease, and she needs all the assistance we can give. I will be here until her healing happens and she can move forward in her life once again.

Blessings to you all…Mara

(What I thought was my Last) IV treatment and a True Friend

Hi all, I am almost a year overdue on a blog post, YIKES!! I was either feeling too crappy to post or feeling well enough to be out doing things. A HUGE update will be coming soon! But for now...today's news...


Definition of a true friend: my dear friend, Yael. She has rekindled the light inside me when it has gone out (many times), she threw a massive fundraiser for my medical bills while she was 8 months pregnant AND working, and she just happens to pop in doctor's office while I'm doing my IV treatment where we share laughs and smiles @ the many blessings 2012 has brought. I love you Yael!

Fundraiser Link

I want to thank my incredible friends, especially Yael Dahan Marmar, for putting together this amazing fundraiser for me: MONAPALOOZA on Thursday, May 12th at 111 Minna in San Francisco 5-9:30 pm. Thank you and hope to see you there. Part of proceeds will go to CA Lyme Disease Association as well. EVENT LINK: http://www.brownpapertickets.com/event/166958

It's been a while since I have updated the blog; it's been down again then up a little, bit of a rollercoaster...more soon.