Wednesday, November 16, 2011

My Story: Guest Blog Posted On Lyme Chick and A Slice Of Lyme

I recently had the opportunity to guest blog on Lyme Chick and A Slice Of Lyme. These two women have brought an uplifting voice of strength to the Lyme community. It is truly an honor to be part of it. Thank You both! 

My Story: 

Hello, my name is Mara Williams and I am a Nurse Practitioner. Three years ago I was working for an Integrative Doctor who discovered her daughter had Lyme Disease. She decided to begin treating it and spent the next few weeks with LLMD's. Anything that she did, I needed to learn as well, so I dove right into it. I listened to ILADS workshops, studied power point presentations, and read whatever I could find about the disease. Needless to say, I was absolutely stunned by the medical controversy, the political conflict of interests, and the horrific marginalization of care that our current healthcare has bestowed upon those who suffer from Chronic Lyme Disease.

Eventually, I left this practice and moved on to work at Gordon Medical Associateswhere I began what I call, "Grad School" for CLD as well as other Chronic Illnesses. Then, about a year and a half ago, I was shocked to discover that my own daughter, Amanda, had Lyme Disease. She fell gravely ill, and our journey began in earnest on Sept. 26, 2010, when we first went to the ER for unrelenting vomiting and severe dehydration. Since that day, we have been gone an additional sixteen times for the same symptoms, and she has also been admitted seven times as well. We tried several different hospitals, but they were all the same in how they chose to address her condition.

On our seventh trip to the ER, I finally realized that Amanda was not going to get the support or treatment she needed for her illness. The only thing the hospitals were willing to do for her was to get the vomiting under control and give her IV meds for a few days until she was able to take food and fluids by mouth. Because her initial CT Scan and labs came back normal, no diagnostic work-up or antibiotics were given to her. One doctor wanted to diagnose Fibromyalgia, another Rheumatoid Arthritis, and most just saw Amanda as a Psych case.

I knew then that what was needed was a center where those with tick borne diseases could go for treatment and support in a compassionate setting and receive care as if they were in a hospital with 24/7 nursing care and other support.

I began talking to friends about creating such a place that I would call, "Inanna House" and telling them how I envisioned it. One friend advised me to write a book so that I would have some clout when I presented a business plan to those with the resources to fund the center.

This motivated me to write, "Nature's Dirty Needle". The book describes what it is like for those who suffer from Lyme and its co-infections, how it affects their families and friends, and how it impacts their lives on every level, and in every way. I wanted the book to be a resource for those still undiagnosed, and for those family members of Lyme sufferers who do not believe that they are sick, and mistakenly think it's all in their head. Reading story after story of cases with so many similarities brings home the reality of Chronic Lyme Disease, and how devastating it is for everyone concerned.

I have been asked many times to write another book with more stories after Inanna House is up and running and cannot wait to do so, and share all the success stories we will have to tell from it.

Inanna House will be a place of hope, healing, and peace. I envision a retreat-like setting in the country, private rooms, safe pathways for walking, pools and hot tubs, an infrared sauna, energy treatments, IV treatments, IV antibiotic treatments, detox programs, organic, healthy foods to eat, and emotional support. I believe that the mental, psychological, emotional and spiritual aspects need addressing in order to completely heal from any disease, and this will be a part of the program as well. I also plan to create an endowment so that those who have depleted their resources can still come and experience this unique type of healing. At this center, the best of all worlds of medicine will be incorporated into the program.

Inanna House will also have MD supervision. There will be treatment rooms, a clinic, and room for conferences and classes. I hope to be able to offer residencies for health care professionals so we can increase the number of Lyme literate providers. I also hope to use the clinical data we collect to further prove to the nonbelievers that we aren't crazy, and that these infections do indeed exist, and in epidemic proportions.

Currently, we are treating Amanda at home. We give her IV hydration everyday, and include amino acids and minerals, and phosphytidal choline, which helps bind the die-off toxins, clean cellular debris, and enables the liver to function better. We are giving her meds around the clock every four hours. 

Her pain with the Herxing is incredible, but after fourteen doses of Gentamycin for Bartonella, her eyes are more clear, her brain is more sharp, and her nausea is better. She is encouraged and feels that she is finally moving forward. However, it's unbelievably shameful that we are forced to do this at home because hospitals either don't believe she has an infection or are in fear of their liability. 

This MUST change, and by creating Inanna House, I believe that the Lyme community will be taking their first step in the right direction, and will soon be shown the acknowledgment they deserve in our current healthcare system.

Thank You,

Mara Williams, NP

Tuesday, November 15, 2011

Author Interview On 50 Women Project By Jessica Buchleitner

Mara Williams, RN, MSN, ANP-BC, has been a healthcare provider for 30 years and is the mother of a Chronic Lyme Disease (CLD) patient. She currently specializes in treating people with Tick borne diseases. Her new book, “Nature’s Dirty Needle”achieved bestseller status within the first few weeks of its release.
In her book, which serves as a guide for Lyme Disease patients, Mara featured the story of Mona Motwani, a woman I interviewed in April 2011 who is currently suffering from CLD and whose story will also be featured in “50 Women”.
I decided to chat with Mara about “Nature’s Dirty Needle” and her upcoming plans to build the Inanna House, a full treatment center for patients our healthcare system has failed to heal due to the conspiracy and corruption surrounding the diagnostic practices of treating CLD.
1. What motivated you to write “Nature’s Dirty Needle”? 
The idea came to me when I was sitting in the ER with Amanda, my daughter,  for the 7th out of 17 visits in the last year due to her struggle with CLD.  I realized the current system is so broken that it would never serve her or others like her. A friend encouraged me to write a book about my experiences helping my daughter through Chronic Lyme Disease and the book evolved from there. Since I have been told many times that the people who watch their loved ones suffer become motivated to do extraordinary things. It has certainly been a motivator for me! I am planning another book with more stories as I have been asked several times since it came out to do another with more stories in it by those who want their story told. Lyme patients are too overlooked and the current healthcare system is inefficient to help them.
2. You have a medical background treating CLD patients. What are common issues you observe in your profession for these patients as far as treatment obstacles?
Common Lyme Treatment obstacles I have observed are: Patients typically see between 10-30 providers before finding a lyme-literate practitioner. The western health care system does not recognize CLD as a legit disease, even though it is an illness caused by bacteria. For this reason, CLD is not a consideration for many of these physicians in their differential diagnosis when seeing someone. If they do think about it, then they run what is called an Elisa test which checks for antibodies in the blood. The issue with this test is that it tends to be negative as the bugs hide from the immune system and within fat cells. There is usually no further testing so the CLD patient is told that “nothing is wrong with them” or that its “all in their head”. Then the physician offers antidepressants because they then believe the illness is psychosomatic.
Once properly diagnosed, if they have been sick for greater than a year, which is too common, then treatment can be challenging as the bugs have had ample time to burrow into different tissues, disrupt the immune system, hormonal system, and nervous system. Also, detox pathways become disrupted and eliminating the die-off and toxins produced by the bugs complicates treatment. Other considerations are heavy metals, mold and chemicals which can increase symptoms and slow progress.
3. You mention the corruption in the medical community regarding Lyme Disease in “Nature’s Dirty Needle”. In what ways do you feel the system allows patients to fall by the wayside? What do you feel needs to change? 
The IDSA or Infectious Disease Society of America claims CLD doesn’t exist. This allows the western health care system to deny diagnosis and treatment. It allows insurance companies to refuse to pay for treatment and to go after providers who treat CLD and ruin them by threatening their license and livelihood. Insurance companies have sued some doctors for over prescribing antibiotics and won! When someone with CLD is forced to deal with this part of the system they are told it is all in their head and offered antidepressants. The way most providers practice allows them 5-10 minutes with a patient per visit. Someone with CLD requires much more intensive time and intervention. Most providers don’t want complex patients so frequently a patient will be given the Antibody test mentioned above for Lyme which is not reliable and usually is negative even when someone has Lyme.  If patients were correctly assessed initially they would be less sick and easier to treat and cure. If ER docs had better knowledge of Lyme they could treat more acute cases, prevent CLD and the years of suffering and years of money spent on care that wouldn’t be needed.
4. You included the story of Lyme Disease survivor, Mona Motwani, a woman also featured in “50 Women”. What made you decide to include her story in “Nature’s Dirty Needle”? What is your hope for Mona? 
Mona’s story is a classic Lyme story. Mona tells her story in a compelling way that grabs the reader. She is filled with passion for life despite her illness. Mona is getting better, getting her life back and it is my hope that she beats CLD fully.
5. Your eventual plan is to build a treatment center. Why is this necessary? Can you tell me about some of the programs and treatments you would like to include? 
Inanna House is necessary because the current system refuses to help with treatment. Just a few days ago Amanda (my daughter) and I went to see an infectious disease specialist at the local hospital and he repeatedly told us the hospital would be able to care for Amanda if  she needed support like IV fluids and meds to stabilize her but would not consider giving her IV antibiotics because of the liability of treating her for an infection she doesn’t have. He must have said at least five times that his group does not agree with the CLD diagnosis despite the fact that so many are sick with it. Thus the need for an inpatient facility to support patients and to start treatment in a safe and professional setting is crucial. As I mention in my book I had a vision for a healing center that I knew was a collective vision. This was in the early 1990′s. For a long time I had let it go and then when I was in the ER with Amanda for the 7th time I realized that the focus of the center needed to be for those with CLD and other biotoxin illnesses. Currently such a place does not exist. I plan to have 24 private rooms initially. Stays would range from a week to a few months depending on the needs of the person. Treatment could include several different options: detoxification, nutritional support both oral and IV, beginning Iv antibiotics in a setting with 24/7 nursing support and MD oversight, clean food and energetic healing modalities. It would be in a retreat like setting on land with open space and an organic garden would supply food to guests and the staff.  There will be a commercial restaurant that prepares clean organic food as well. This would allow 3 different income streams: patients, garden and restaurant. Someday we can include treatment for animals as
It is necessary to raise several million, about 25 million dollars , to support the center so those with no resources left can still come for help. It is common for someone who has been ill with CLD for several years to have lost their homes, and all their savings, owing over $100,000 or more in healthcare costs.
Additionally, we would not be able to take any insurance as that would limit the treatment protocols we could perform. We are creating a new paradigm to include the best of all health care worlds.
6. Can you tell me about some of the most revolutionary physicians you have worked with in helping Lyme Disease patients? 
The MD’s I work with at Gordon Medical have all practiced what I call ‘out of the box’ medicine, always looking for ways to help people get well. They are Neil Nathan, MD; Eric Gordon, MD; Wayne anderson, ND; and Azra MaEl, MD; who have traveled the world finding new ways to approach illness and help people. They are great investigators and researchers who refuse to give up and settle for the status quo or standard of care. They step up out of their comfort zone, are open-hearted, compassionate and willing to share their knowledge and expertise. They are not afraid to say ‘I don’t know”.
7. Question of the day, Mara: If you had the chance to give all women advice, what would you say to them? 
We all come into this life with gifts from God or our higher source, all of us. I would say-discover your gifts and find ways to use them passionately and for the highest good of all. The rewards are amazing! It is living a win-win life!
Order the book
Mara’s book “Nature’s Dirty Needle” is available for order by clicking here.
I recommended this book for anyone dealing with CLD down to those who think they may have CLD. The medical advice is sound and the real stories of Lyme survivors are uplifting and informative.

About Me

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"We all strive for balance in our lives. If you find yourself striving for inner peace and a sense of harmony, it takes more than a good attitude. Our sense of self is regulated by neurotransmitters, hormones, and many other cellular functions within our bodies that influence our stamina, immune function, sexual drive, and nervous systems."

Nurse Practitioner and Energetic Healer, Mara Williams has been a health care provider for over 30 years. For 15 years, Mara worked in Hospice, helping people at the end of their life. For most of her life she has been devoted to a spiritual practice and developing her gift of working with energy. Eventually she returned to school at UCSF to earn a Masters and become a Nationally Board Certified Adult Nurse Practitioner so she could have a greater impact in helping people heal. Currently, she specializes in treating people with Tick Borne Diseases (TBDs), using an integrative approach to help them attain greater health and well-being. The secret to healing is discovering the root cause of the problem, and this is what Mara does best.

Besides being a provider, Mara has personal experience as a mother of a child with Chronic Lyme Disease. It has given her a greater understanding of what patients with TBDs experience in the Medical World of Western Medicine and how difficult it is to find a Lyme-literate provider who recognizes and understands the complexity of these chronic diseases.

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