DAILY INSPIRATION

I know many of you are still struggling with Lyme Disease (or for those of you that are not dealing with Lyme Disease, perhaps something else). One of my dear friends who started this journey with me at the same time (we 'met' through an online support group and became dear friends through our struggles) still struggles with Lyme Disease. My heart breaks when I hear that she is still not doing well and unable to feel like herself in most ways.

Having been blessed with recovery, and a normal life again, I feel it is my duty to share what I did to get better with others. At the very least, I should provide inspiration to those who are still struggling. When I was undiagnosed, sick for years, and then sick through treatment for years after that, I looked everywhere for HOPE from someone who had recovered from Lyme. I could not find but one. This, of course, contributed to hopelessness.

I am here to tell you that you CAN and WILL get better. I never DREAMED I would be doing what I am today. I have started working on my small booklets (the most important of which I believe will be an outline of everything I did to get better) to share with this community. I promise to work on them more in the New Year (but work and life are quite busy), but please feel free to bug me via email to encourage me to finish them. I know not everyone will get better the way I did, but I have a lot of information to share that I believe can at least help.

For now, I will provide you with some hope. When everyone else is celebrating the holidays and you feel blue (I remember this very well from years past), please remember that ANYTHING is possible. Miracles do happen. My first LLMD told me I would never get better (I quickly changed doctors). I proved him wrong. HOPE can never be taken away. If you want some inspiration from days when I was in IV treatment for Lyme and could see through the light, see this post. To that vein, here are a few inspirational quotes:

"When you have come to the edge of all the light you have
And step into the darkness of the unknown
Believe that one of the two will happen to you
Either you'll find something solid to stand on
Or you'll be taught how to fly!"

~Richard Bach, best-selling author.

"Kites rise highest against the wind - not with it." ~Winston Churchill, was a British politician and statesman known for his leadership of the United Kingdom during the Second World War.

"Little minds are tamed and subdued by misfortune; but great minds rise above them." ~Washington Irving, was an American author, essayist, biographer and historian of the early 19th century.

Also, for those of you really feeling you need to try something new - 2 women on the CA Lyme group who did not get better through traditional LLMDs or other complicated holistic treatment posted that they BOTH became symptom-free and healthy through an Ayurvedic doctor from India (I am not promoting this doctor nor do I get any sort of incentive for promoting him). He is visiting the U.S. in 2013. I also saw a doctor in NYC for many months (and still work with remotely) that helped me get to where I am today. I am happy to provide either doctor name to you in a private email.

With warm wishes for health, happiness, and peace...Mona

Pretty long video, but WELL WORTH IT.

http://www.youtube.com/watch?v=rixyrCNVVGA

As those of us who have endured Lyme Disease, or still continue to endure it, know, everything we eat and put in our body affects how we feel. It is sad to me that most of the nation doesn't understand the importance of the environment, food, and how much it affects our health.

What is in this video is NOT new to most of us: eating safe, non-genetically modified organic food free from antibiotics and hormones is essential to feeling well. But, Robyn O'Brien does an amazing job illustrating the story, the facts behind all of this, how the food industry perpetuates this cycle of ilness-causing foods, and why good clean food is still inaccessible to most people (cost). Some interesting stats from her talk: Americans spend more on health care than any other country, and have more cancer than any other country. 1 in 10 breast cancers is genetic; the other 9 are due to environment (according to Robyn).

I struggled with convincing my parents to buy me only organic food, and the grocery bills were so high for the 6 years that I was sick. They thought it was all BS. My bills grocery continue to be high because I refuse to put anything else in my body even though it's not in my 'budget.' But being disabled, in bed, and sick again is also not in my 'budget.' I need to keep myself healthy.

I hope we can change the policies of this country so that the food industry stops inherently contributing to illness. I don't think 'regular/healthy' people realize how important this is; I have many friends who have the means to eat organic/pesticide-free but do not. I suspect this is because the message hasn't alarmed people enough. The message needs to be loud and clear HOW dangerous chemicals, pesticides, and other agents in our food are.

I hope we can drive this point home to many so we can prevent more illness in this country.

Even the American Pediatrics Association (hardly characterized as holistic or radical) reported that the evidence is “robust” for associations between pesticide exposure and cancer (specifically brain tumors and leukemia) and “adverse” neurodevelopment, including lowered I.Q., autism, and attention disorders and hyperactivity in children. The article is here. The APA linking pesticides to these health concerns is VERY alarming in my view.

My dear friend Johonna has been creating a blog of ways to keep ourselves healthy, in home, food, everything we do - I learned about both of the above pieces from her.
http://www.littlegreenmoments.com/

I feel it is our duty to educate others about what we have learned. So please share this information with those you love, and let's try try to get consumer demand for clean foods high enough so that EVERYONE can afford it.

This month, I was honored and humbled to be featured in San Francisco Magazine's December issue. I was in a section where they profiled Women Social Entrepreneurs and in Philanthropy. The reason they chose me was because I am a co-founder and Board Member of a nonprofit, called Spark (www.sparksf.org). I co-founded this nonprofit with some other women when I was in law school about 7 years ago.

I post this here along with the theme of the last post, to show Lyme patients out there that ANYTHING is possible. I never thought I would be able to walk 10 minutes again, to get through the day without napping again, to be able to use my brain again, and I certainly thought I would never work again. Not only am I working, but I am doing well, thriving, and continuing upwards. After years of feeling near-death was imminent (or at least hoping it was because the suffering of this disease was intolerable). I am here to tell you that ANYTHING is possible. I couldn't even imagine working 7 months ago. I am still paying off that medical debt, but I feel blessed to feel independent, healthy, and happy. I would say I am between 85-90%, and still going for the 150%.

Never EVER EVER give up....Below are the photos from the article..I am at the very bottom picture. The link to the online article is at: http://www.modernluxury.com/san-francisco/story/the-philanthropists?page=3.

As I promised, I would detail every piece of my protocol to share what helped me and hope that you can also use some of it to guide you in your treatment process..I'll be posting snippets of info soon, on detox, hormones, etc. Stay tuned!

A YEAR OF FIRSTS

Many months ago, I was compelled to write about my YEAR OF FIRSTS after an exhilarating realization that this year, after 6 years of complete and life-sucking disability from the sci-fi disease most of us know as Lyme Disease, I am not only Lyme-free but have had so many breakthroughs this year. So many firsts at so many things. Granted this list is not representative of things I am doing for the first time ever, but rather or the first time in 5 or more years since being taken hostage to this illness over 6 years ago. So, so it might as well be the first time I am experiencing them. It feels like the very first time!

I write this to share the progress of my journey but also to give you HOPE, as I know how valuable this is when sick.

I was at the airport a few months ago, slept 5 hours (5 hours too few for my needs). I was exhausted but exhilarated. This was the first time I have gone to the airport by myself, without a wheelchair to help me get through security because I would have been too exhausted to stand in the security line, and unable to pick up my bags to put them on the conveyor belt in the past.

It was also my first time without my portable oxygen concentrator to help me breathe on the flight. Again, first time since I became sick with Lyme, not the first time ever. But it still feels so amazing to take these giant leaps that can only be seen by others as baby steps. I know you know what I am talking about. I had this same feeling when I was able to walk up my parents’ driveway (literally 10 yards) at the age of 33 (2 years ago only) when it had before been an unimaginable feat.

Back to the airport: I checked my bag in, rolled my small carry on and carried my purse to the security check out, feeling….EMPTY. Usually I had an entourage of bags – about 4 to be exact: a purse, a food bag, a medicine/supplement bag, a carry-on, and a huge portable oxygen concentrator, which looked like a small black cloth robot that hums and purrs when it is on. No oxygen today! First flight without it! No bags strapped to my every limb, things hanging off me and me a contorted mess trying to figure out where my phone was. Here I was with just a carry on and a purse, everything neatly tucked like a NORMAL person! I was walking through the terminal. As I walked by the passengers in wheelchairs, I remember what it was like to be a young person being pushed in a wheelchair, and how I felt everyone was staring at me (well a lot of them were staring, like what is wrong with you, you are so young?)

I was at the airport on my own and walking through it by myself! Never in a million years would I have thought this was a huge feat! Writing about this now seems silly, but it was my routine for almost 6 years...and we must always remember the steps that for us are the building blocks to complete and total health. If you are just experiencing some baby steps of improvement, please know that these truly are paving your path to the person you once were and will become again.

In reviewing this amazing year of firsts, I hope to remind all of you Lyme warriors and anyone else facing a health challenge or an uphill battle that there is ALWAYS a light at the end of the dark tunnel. I am not trying to brag (well a little, but I deserve it given the last 6 years)...so here is my year of firsts. This past year, I went to:
• my first concert (after 7 years!) – Foster the People at the Greek
• my first baseball game (after 8 years)
• my first camping trip (complete with tick-freakout)
• I danced for the first time (you know, fast enough to feel my heartbeat and enough to exhaust me afterwards even though it was only 30 minutes!)
I had:
• my first time biking (and biking up a huge hill and around Lake Washington for 40 minutes), and now I bike regularly

• my first time drinking caffeine (yes, chai tea lattes, wow caffeine is amazing. I never drank coffee but now I understand why everyone drinks caffeine, what a pick me up!)
• my first trip cross-country by plane without oxygen
• my first airplane trip without wheelchair assistance
• my first pro bono case as an attorney after many years of being sick
• my first time working again for the first time since Lyme knocked me out of life many years ago!
• my first time hiking at 9,000 feet in Tuolumne Meadows, first time fly-fishing (EVER) and catching my first trout up there (Thanks Andrew!)

• Other exciting firsts for my life not just this year, but in life, were being invited to speak at the United Nations Headquarters in March on women’s human rights at the 56th Commission on the Status of Women. I was later invited to speak at the State Department Active Citizen Summit on “Investing in Women and Girls.”
• first time EVER on a paddleboard, and first time on a surfboard in over 8 years! Ok I wasn’t really ready to surf yet, but my (now ex)boyfriend did most of the paddling and tugged me out there so I could sit in the waves and play with sea turtles and try unsuccessfully to catch some waves

• first time working out (that was 2 days ago) at a gym!!

• First time being in the press for something other than Lyme Disease (San Francisco magazine is profiling me for their December issue for my role as co-founder of Spark, www.sparksf.org, a nonprofit I co-founded while in law school 7 years ago). Should be on newsstands in the next week!

All I can say to those of you with Lyme Disease (or any other illness/health challenge) who are sitting in your bed, attached to an IV pole, with your picc line, or your 900 supplements and meds, brushing through tears and vertigo and memory loss and incomprehensible pain to even look at this screen, your time will come. There IS light at the end of the seemingly long tunnel. Don’t ever let someone say you cannot beat this disease. My first LLMD laughed at me when I told him I would climb Mt. Kilimanjaro. I cried the next few appointments when he told me it would basically be very difficult for me to be healthy Mona again, and a few appointments later, I switched LLMDs. You CAN and you WILL get where you want to be. Just believe. As Wayne Dyer says, when you believe it, you will see it.

I have many more posts to come, and apologize for lagging on updating my blog, life has been busy, in a good way! Please check out my new site - www.monamotwani.com - and www.monamotwani.com/#!ebooks/cl3g, where I plan to detail in depth my full treatment protocol that got my healthy over the past 6 years (similar to Perry Fields’ Lyme Warrior book) and many other helpful guides. I plan to keep updating this blog as well.

I found it next to impossible to find people who beat Lyme and went on to their normal lives when I was sick. I drudged through millions of online messages, contacts, but couldn't find anyone who had beat it. Could that be possible? It was maddening, disheartening, and depressing. I lost a friend to the disease, and found it unfair that the Lyme community didn't have a central depot like livestrong.com or other resources like the cancer community to help them stay positive and follow those who HAVE gotten better. I found the most inspiring posts those where someone told me how they were better...I hope you see that it is possible. I did a LOT of hard work, physically, emotionally, and spiritually. I went into massive debt and still have a lot of that debt. But there is no price we can put on health. I am lucky that I had parents to take out their retirement money to fund most of it, but that doesn't make any of this OK. More on that later or I will go on for hours...

"When you have come to the edge of all the light you have
And step into the darkness of the unknown
Believe that one of the two will happen to you
Either you'll find something solid to stand on
Or you'll be taught how to fly!" ~Richard Bach

Be well,
Mona

Molly's Story

A great young woman I met via email, Molly Franken, who found out about my story on the California Lyme Disease online support group, posted an incredible synopsis of her story. She is from LA, and though we have never met, she has been in touch with me since I recovered from Lyme in January and before I slipped back into something that feels like a relapse. She has been emailing me and checking in on me constantly and I want to thank her for reminding me about the importance of sharing my story. Also, I want to thank her as she inspired me to get back to writing on my blog.

I want to share her eloquently written story. It shows how this disease strikes so many women who are young, driven, independent, and who suddenly because isolated and sick. Molly is in the business of making movies, and most recently, in the business of writing words. She is a strong woman who was taken out by Lyme but will be back at it one day. For now, Molly, I commend you on your strength, and your beautiful words that you have shared about your story. I think we will learn a lot from this experience and be able to help others with it....One day, Molly and I will be mt biking and drinking margaritas (when we meet in person, that is) and we'll show the photos of our Lyme-free selves to y'all!

http://www.theconversation.tv/wellness/my-journey-with-lyme-disease/

Remembering Possibility

Hi all,

Apologies for being out of touch for so long. I have been meaning to write about my new life as a Lyme-free Mona since January when I found out my tests were negative that month. Of course, we all know Lyme is a difficult battle, with not always reliable tests to tell us when the disease is gone. Though I felt better than I had in 6 years and had negative tests, I wasn't out of the woods. We all know Lyme is a disease unlike any other disease we've come across. It makes no sense, affects ALL systems of the body (including your mind), and is different for each patient.

Though I wanted to write excitedly about my amazing progress at the end of last year and beginning of 2012, I unfortunately have hit a dark patch again. Numerous factors contributing to this: a parasite cleanse, a kidney infection, overexertion, emotional stress, throwing out my back. But in reality we (my doctors/naturopaths/healers, you know that team that we all have that costs us every cent in our bank account but is the only thing keeping us going) think I may have a relapse of either Lyme or Bartonella. Toxicity is present for sure, and as soon as I come down from this rollercoaster ride, I plan to write a DETAILED post about everything I did to get over this disease. I also plan to write informational guides for Lyme patients, advocate for legislative changes for Lyme patients, but the universe isn't letting me get to that part as fast as I'd like. So I am trying to be patient. I had my big emotional breakdown a week or so ago, crying, panic attacks, wondering how it was possible after 6 years of being sick (but only 4 years of treatment), this disease still has a hold on me.

Well, I realized I think too much. I try to figure out HOW to get from point A (not well) to point B (150% healthy). I realize I have no idea how I got from Point B (healthy) to Point A (completely disabled). So as much as I want all the answers and someone to tell me what is happening every step of the way, Lyme doesn't provide that type of certainty.

But I do remember that no matter what, in wanting all the answers, sometimes I believe it's important for us to just remember the POSSIBILITIES of healing. What the mind believes, the body achieves. I truly believe the reason I healed myself (current setback excluded) was because of this belief. I had quotes (at least 50) plastered all OVER my bedroom for years. I repeated affirmations. I made vision boards. I visualized my body getting better. I still do. Keep believing. That belief transforms into REALITY. It may take months, years, decades, but this belief CAN bring you healing. Believe that you will be better. No matter what ANYone else (patient, doctor, person) tells you. Mind over matter has truth - I have lived it.

I was just at my LLND's office a month ago and he was telling me something I read in a book recently as we looked at my blood under a dark field microscope. If doctors were to take my blood (or anyone's for that matter) and put it under a microscope, and subsequently stress my body (even a mile away from the office where that sample of blood was sitting), the blood (that is now a mile away from my body and under a microscope in the doc's office) would RESPOND negatively to the stress, the SAME WAY the blood cells in my BODY respond! That is, the blood cells would still feel the stress even when OUTSIDE of my body. HOW IS THIS POSSIBLE?

There is clearly a connection from the body to cells that is above and beyond what science can explain. Some higher power, consciousness, energy, whatever you will call it, is present in the ability of our cells to know stress. Consequently, our cells must have the ability to know healing on this level. There are things that affect our body that science cannot explain!

Keep believing in yourself. I promise you can get there. I look forward to getting back to healthy so I can share with you what I did to get there. For now, back to dealing with toxicity and possible slight relapses with Lyme or Bart. All hope is not lost. It is the final cleanup, the storm before the calm.

Tell your heart that the fear of suffering is worse than suffering itself. And no heart has ever suffered when it goes in search of its dream.

-- Paulo Coelho

One of my favorite TED talks that I haven't seen in a while. I am sure many of you have seen it but it is a reminder that ANYTHING is possible and we CAN heal ourselves. It is WITHIN ourselves to heal. http://www.ted.com/talks/jill_bolte_taylor_s_powerful_stroke_of_insight.html

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!