Friday, June 25, 2010

Check out my new public blogging site!

Hello Friends,

I have been asked to publicly blog on the site Please visit this site and click on the section titled "The India Story" to read more about my journey!

Thanks for all of your support!


Thursday, April 29, 2010

My Lyme Story

Friends and Family,

Many of you may already know that a little over two years ago I was finally diagnosed with "tick borne" illnesses such as Lyme disease. I have been symptomatic for about 5 years and probably contracted the disease 5-6 years ago. I worked as a field biologist all over California, bushwhacking through areas where ticks and tick-borne illnesses occur. I also spent time in Costa Rica, Germany, San Luis Obispo and hiking locally in the Santa Monica Mountains. Yep, these infected ticks occur in all of these regions, so my exposure was high. At some point I was infected, but I, like many others, never saw the tick. I had been suffering from flu-like symptoms, pain, headaches, and fatigue for many months, and finally sought out medical treatment. Baffled by conflicting, misleading, vague and wrong diagnoses, I began researching symptoms on my own. After many different doctors and diagnoses such as fibromyalgia, chronic fatigue syndrome, sleep disorders, PANDAs (whatever that is!), arthritis, mitochondrial metabolism problems, and many other vague possibilities, I finally tested for Lyme disease.

Lyme Disease and other tick borne illnesses are tricky to diagnose and cure for many reasons: the co-infection combination makes peoples symptoms unique and varying, the bacteria adapts to a persons individual immune system, the bacteria is sophisticated and mutates regularly, the CDC ('clowns for disease control') and other doctors debate lab results and treatment protocols, etc. Tick borne illnesses are currently the most common vector-borne illness in the United States and reported cases are increasing every year.

You might be thinking, “Why can’t you just take antibiotics if Lyme disease is caused by bacteria?” Well, you can. If the tick bites you in an area you can see, if you develop a telltale bulls-eye rash or other telling symptoms and seek prompt medical treatment, a heavy dose of antibiotics might do the trick. If, however, you don’t realize you have Lyme disease until almost 2 years later, like me, it is much more difficult to treat. The Lyme spirochetes are smart, and they are relentless. They burrow through connective tissue like a corkscrew, faster than things can move through your bloodstream. They encapsulate when they detect a hostile environment, and then reemerge later when the “coast is clear”. They enter and destroy tissue in every organ in your body. They literally “eat” brain tissue, causing memory loss. They like to hide in the pericardial sack around your heart, causing palpitations and heart damage. They damage your liver, your kidneys, and just about every other important organ of your body.

One of the most frustrating things about Lyme is that people around you can’t really tell that you are sick. My main symptoms started off like normal aches and pains that progressively turned into severe arthritic conditions. The symptom list is long and varies, but pain and fatigue is the constant theme. Over the past few years, I've tried my best to live a normal life and many people have no idea what I'm going through. And that's normal too. Why would a 25 (now 29) year-old be in so much pain all of the time? She looks normal!!

You might not know or realize that I have had an IV port in my arm since August in which I use to inject antibiotics three times per day. My bedroom looks like a storage room in a hospital. I currently spend over $2,000 per month out of pocket to pay for my IV medications and doctor’s visits (the Lyme specialist is out of network). Strangely enough, antibiotics are considered “experimental” therapy for Lyme disease, and the insurance doesn’t cover them. In addition to the IV, I often take up to 50 pills per day, (more antibiotics, thyroid medication, gallbladder protectors, antivirals, and herbal bacteria-killers) and give myself daily injections to combat a serious vitamin deficiency. The Lyme leaches nutrients from my body now and much of my intestine is unable to absorb what it needs. My Bell’s palsy is fairly minimal, so most of you can’t tell that a portion of my face droops. My heart skips beats when I lay flat. The co-infections (Lyme’s best friends are Bartonella and Babesia) cause me to twitch and jump (entertaining to students!), hear sounds that aren’t there, have night sweats and night terrors, lock-jaw, and a plethora of other weird symptoms. Debilitating pain isn’t always visible to people; I am in pain constantly.

Now you are probably wondering how I’m even able to function. Quite honestly, not well. But not functioning is not an option; any alternative is worse so I fight to keep my job, my home, my friends and my sanity. Sometimes I feel like I’m slowly losing. Many times I have thought to myself: “dishwasher or laundry,” because I can’t do both.

But I’m not giving up! I have good news!

Cutting-edge science has produced some new and promising treatment options. I have been accepted into a program in India, where I will be the recipient of embryonic stem cells, which will repair and regrow damaged tissue and immune system function. At the same time, I will also continue taking antibiotics, with the hope that with my repaired immune system, I can finally kill this infection.

I’m sure you can imagine how long and how thorough I have been researching this option. The science is sound and the evidence is real. Quite frankly, I believe it is the best option I have right now to save my life. I am planning on leaving mid-June and will be in a nice hospital in Delhi for two months where I will receive daily stem cell injections any physical therapy. My doctor here in the U.S. will continue to work with me and the doctors in India. The treatment will cost over $40K, not including travel expenses. (Can you imagine how much this would cost in the U.S.?!) Although I am using some of my savings and trying to refinance my home, this is going to be a hard financial hit after years of already spending above my means for medications.

Close friends and family have convinced me to humbly ask for help. I’m embarrassed to talk about money, but a friend assured me that it would be okay to let people contribute if they wanted to. Therefore, I have set up this website/blog and a donation option for people. On it you can find more information on stem cell research and therapy, information on Lyme Disease and eventually a sort of diary I will update while I am in India.

Thank you for all of your love and support over the past few years. You have no idea how lucky I know I am compared to others living with this infection. Your love and compassion means the world to me.

Love Always,

Monday, April 19, 2010

A New Chapter in The Treatment of Lyme Disease

Welcome to my shiny new website and blog! After five years of suffering with Lyme Disease and over a year of extensive research, I have chosen to undergo embryonic stem cell therapy in New Delhi, India. Quite frankly, I believe it will save my life.

Many people are unaware, intimidated or overwhelmed by the phrase "stem cells" and simply do not actually understand what stem cell treatment is or what it entails. The following information is borrowed from Amy Scher's website:

Why we need stem cells
All human bodies have the ability, to repair and regenerate to varying degrees in various organs. During a person's lifetime, the body is able to maintain a balance and as age advances, the ability becomes dampened. If the body becomes diseased, either by its own malfunction (an autoimmune disease) or viruses, bacteria, etc. (which is often the trigger for an autoimmune disease), this leads to depletion of the body's cells and often incapacitating or incurable conditions. For many common diseases, medication is given to control or Band-Aide the problem, but there is no true solution.
Once stem cells enter a person's body, they are able to supplement the missing or dwindling cells and replace or repair the malfunctioning parts of the body.
What are stem cells? Why are they important?
Stem cells are considered the body's master cells. They can differentiate into any number of types of specialized cells such as muscles, nerves, organs, bone, blood and so on. These properties make stem cells different from the body's other mature cells which are already committed to their already assigned function. For example, a skin cell can only divide and generate new skin cells. So, why are embryonic stem cells so amazing? They are able to become any type of cell because of their "plasticity" (the ability to change permanently, as opposed to elasticity, meaning to change temporarily and then revert back). This makes embryonic stem cells essential for renewing and repairing the body. They are formed at conception and specialize later to become various tissues of the growing embryo. After birth, the body retains the stem cell reserves in various organs. These reserves are finite (limited) and when depleted, the body begins to succumb to disease, disorders and aging. Stem cell therapy offers the potential to replenish the reserves and fight a wide variety of diseases and disorders.
Where do stem cells come from?
There are three major types of stem cells; embryonic, fetal and adult -- which includes cord stem cells. Each comes from different sources and has different properties.
About embryonic stem cells
When a sperm fertilizes an egg, it becomes what is known as a zygote. Many scientists view zygote as the ultimate stem cell because it can develop not only into an embryo, but also the surrounding tissues, such as the placenta. Because the zygote has the highest degree of plasticity (ability to permanently change), it is referred to as "totipotent" stem cell (read more). The zygote begins to divide 30 hours after an ovum is fertilized and by the fifth or sixth day, the cells form a blastocyst. At this point, the stem cells are less plastic and more specialized. Those on the outside develop into the placenta and other tissues that surround the fetus, while those inside, referred to as embryonic stem cells, become the cells of all the fetal organs and tissues. These stem cells can become any of the more than 200 types of cells in the body that are called "pluripotent" (read more). The embryonic stem cells do not show any immune reaction in the body because they do not have any antigenic proteins on their surface. This makes them a great candidate for autoimmune diseases.
What they are doing
-Human embryonic stem cells can divide and grow into any body part. However, in vivo conditions, their division is finite (limited). The cells follow the normal division that is inherent in an embryo. The division slows down after a period of nine months and then the functioning capacity gradually increases as it would in a growing child. Because the stem cells are finite, there are no tumors seen in transplantation. These cells do not have the ability to form a new organ. As far as the progress of embryonic stem cells, it can be said that the complete effect of cells transplanted into a patient is closely linked with the time frame of a human embryo's development. The cells continue their developmental process as per their pre-programmed time frame.
-Because they do not have antigenic properties, there is no immune reaction in the body (like there can be with other types of stem cell transplants) and immunosuppressant drugs are not required. Also, one embryo can be used to any blood type for this reason.
-They have been found to be very effective in autoimmune disorders and silencing the killer cells of the body. Adult stem cells cannot be used for autoimmune diseases because of the possible immune reaction.
-The stem cells have a "homing in" capability (that is the ability of cells to make its way to the affected tissue). They are able to find the damaged or diseased cells to begin repair.
-Stimulation and corrected of the suppressed immune system is very commonly seen. The patients become healthier and suffer fewer bouts of infection. Their body's resistance to infection increases.
-Some conditions that they have shown improvement with are autism, mental retardation, liver diseases/disorders, degenerative diseases, Alzheimer’s, Parkinson’s, multiple sclerosis, motor neuron disease/ALS, cerebral palsy, traumatic brain injuries, skin disorders, autoimmune disorders (such as lupus), genetic disorders (such as down syndrome), eye disorders, kidney disorders, musculoskeletal disorders, spinal cord injuries, and cardiac disease/disorders.
What makes Dr. Geeta Shroff different?
There are stem cell options around the world. Dr. Geeta Shroff's process is different because she has discovered a technology, which uses ONLY one human embryo to create an infinite number of stem lines, eliminating the ethical issue of destroying embryos for research and treatment. She also has created a pure human product and does not use any animal stem cells such as those found in mice or rats. And, since human embryonic stem cells don't create any immune reaction in the body, this eliminates the need for immunosuppressant drugs.
As far as I'm aware through my own research, Dr. Geeta Shroff is the only person in the world who has conducted successful clinical applications on humans in hundreds of patients suffering from incurable or terminal diseases with no adverse reactions. Dr. Geeta Shroff has filed for a patent in both India and the United States, which covers 126 countries.
Why isn't this available everywhere?
Dr. Geeta Shroff's type of work is governed by the Indian Council of Medical Research, which sets forth guidelines for stem cell research. Basically, under Indian law, doctors may treat incurable and terminally ill patients with novel procedures. Dr. Geeta Shroff is not bound by many of the regulations and politics that other countries have which is why patients are coming from all over the world to give this revolutionary treatment a chance.