Dear Readers and Fellow Lymies,

In 2008 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 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!

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. 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 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!

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 Iife.

I am planning on leaving mid-June and will be in a nice hospital in Delhi for two months where I will receive stem cell injections any physical therapy daily. 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 a blog with a donation option. Along with Healthcarehacks, please visit my blog to find more information on stem cell research, embryonic stem cell therapy and information on Lyme Disease.

In the meantime, I will be journaling on this site about my medical and emotional journey while receiving therapy in India. Stay tuned!

With love and positive vibes, 

~Kyla