Top
$2,460 of $10,000
25%
26 donations

This fundraiser ended on 01/26/13

Create a fundraiser like this

The friends of Jamie Legasa are uniting to raise money to help with her battle against Lyme disease. Please show your support! Thank you!

Hi, I’m Jamie and thank you for visiting my page. I am here because I struggle with Chronic Lyme Disease and other vector-borne co-infections that come with Lyme: Babesia (malaria-like parasite), Bartonella (Cat-Scratch Fever), Mycoplasma (Atypical pneumonia), and Ehrlichia (a white blood cell killing parasite). Ticks truly are “nature’s dirty little needle.” There is a possibility that I could have other co-infections, but unfortunately many lab tests fail to pick up these infections. The standard Western Blot test currently used by the medical community to test for Lyme is only about 40% effective- less than a coin toss. I was lucky enough to actually receive a positive test in October 2011 (or unlucky depending on how you look at it). To put it bluntly, I literally had a “raging” case of Lyme and I believe that’s why it was detected. I was thankful to finally have an answer to why I had all these horrible symptoms for years, but little did I know this would be the beginning of a war I had to fight on my own, against my own body and against the current medical community. This is my story. 

In October 2011 I collapsed in my primary physicians chair and said “test me for everything; I can’t live like this anymore.” To summarize the past 10 years of my life can only be described as the most unimaginable, horrific, never ending pain one person could endure, metaphorically speaking, it’s like my own body is relentlessly torturing me. I’ve experienced migraines that felt like my skull was cracking and splitting apart as well as neck pain that felt like hardened cement around my vertebrae. Pain so agonizing it would take the wind right out of me, keep me down in bed with fits of screams, and then followed with even more pain where I couldn’t even utter a sound out of my body. Sometimes I would just throw up from it, sometimes I would twitch and convulse. There was no relief. I would go days, even a week without being able to go to the bathroom. My kidneys and bladder put me in the ER more times than I can count. I felt like I had poison running through my veins, not blood. Some days I even would wonder if somehow I was being slowly poisoned to death. I went from doctor to doctor, cat scans to x-rays- nothing was ever detected. I would gobble up Excedrin Migraine, Naproxen, and Vicodin in hopes of curbing some of the pain. I went to the chiropractor 3 days a week just to try to get some relief in my joints. My doctors would throw out a diagnosis just to satisfy me: your migraines are hereditary, you have scoliosis, tendonitis, calcification, IBS, anemia, vitamin D deficiency…on and on…and of course each doctor was always quick to diagnose me with depression. All my pain was purely because I was sad and psychosomatic. So as I sat in my physician’s chair that October day, barely able to look up from the overwhelming fatigue, my vision blurred and my words disorientated, I watched as she drafted lab orders to test me for Lupus and a few other “possibilities” and just as she was just about to finish, she said “Let me add a Lyme test… just in case.” Neither one of us was expecting the outcome. She had already concluded that day that I had fibromyalgia and of course depression. She also suggested a Neurologist I should see to get myself tested for MS and auto-immune disorders. I stumbled out of her office in a haze; barely able to walk straight as I had began losing my coordination. I sat down with the lab tech, had my blood drawn, and headed back to work.

Overwhelming anxiety would come over me everyday because I had nearly become dyslexic. I couldn’t read or write properly. I had to get new glasses because my vision had become a blur. I couldn’t remember where I was or how to get around my office from the brain fog. I couldn’t walk a block to get lunch because I would become so air-starved and the back of my legs would feel like they had caught on fire. I barely slept; the insomnia, nightmares, and sweats would keep me up all night. Everyday I would sit at my desk with a fever and on the verge of collapse. Everyday I anticipated getting fired. Then on October 27th I got an email from my doctor:

Attached is copy of your blood test results. It showed that you are positive for Lyme disease. Please come in to discuss the next steps. I look forward to seeing you soon.

FINALLY an actual diagnosis! I wasn’t crazy! This has all been real! And with a quick Google search, I discovered that according to the Center for Disease Control (CDC) I would be cured with 14-21 days of antibiotic treatment. I was almost giddy- I couldn’t get to the doctor fast enough to get my 21 days of Doxycyclin. The torture had an end…or so I thought.

Fast forward one year later- I am not cured from my disease. Everyday is a battle. I started my 14 days of Doxycycline my doctor prescribed for me. Within the first 24 hours I was headache free. I remained headache free the whole 14 days. It had been YEARS since I had gone that long without getting a migraine. Two days after completing the antibiotics I felt like someone had chopped an axe into my skull. I called my doctor in tears, literally begging her for more antibiotics because I thought I needed the full 21 days. She called in one more weeks worth. As soon as I started taking them the headache and neck pain went away. My back no longer ached. Then again, 2 days after finishing the one week dose, I was back in agony. I called and left a message with the night nurse- I didn’t think I could live through the night. The next day my doctor called in one more week, but I had to come see her. I started my medicine and within 24 hours I felt good again. I went back to my doctor’s office. She explained she had called around to some other physicians to get their take on Lyme; this is when I first learned about the “2 schools of thought regarding Lyme disease.” The modern medical community does not recognize CHRONIC Lyme disease. She could no longer treat me for Lyme because the CDC says I should be cured of it by now. But, there is a society of doctors who specialize in Lyme and do not follow the CDC guidelines of Lyme treatment. These doctors are called Lyme Literate doctors and are trained and practicing under the ILADS (International Lyme and Associated Diseases Society) guidelines. The only problem: most of these doctors are ND’s (naturopathic doctors) and they are not covered by insurance (there are a handful of MD's who also specialize in Lyme disease, they also do not take insurance, as it is the insurance companies that are the one's filing complaints against MD's who treat Lyme past 30 days). My doctor referred me to the ND that also worked in her office. So, I agreed, I was desperate. I met with the ND a couple days later, she told me that she did not have any experience treating Lyme, but that she knew of 2 Lyme Literate ND’s in my area. So I contacted both. I was told the initial visit was around $600 and each follow up was $250-$450 (remember, this is ALL out of pocket). I felt defeated; there was no way I could afford it. The pain and sickness had come back, I kept telling myself it was the “die off” of the bacteria and that it would soon pass. It never did, it got worse…and worse. Finally one day, I hit the point where I couldn’t take it anymore- I would rather be dead than have to continue to endure this. I had a moment where I looked at a bottle of painkillers and considered taking the whole bottle. I stared at it and found myself reaching out for them. I stopped myself. I broke down. I sobbed until the pain in my head felt like I was being crushed in a vice. I called my dad the next day and asked him if he could give me the $600 to see this Lyme Literate ND. He agreed, and I made my appointment. This is when I met a TRUE doctor that has literally saved my life. I will call him Dr. Z.

Dr. Z. only comes into my city on Fridays. I drove across town and entered a somewhat shabby medical office. It wasn’t modern or inviting like most medical offices in the city. I sat down and could see some very sick patients in a back room hooked up to IV’s and looking reminiscent of death warmed over. My name was called and I was taken to a cluttered office in the rear of the building, I patiently sat with all my lab work as I waited to meet Dr. Z. I was nervous. Dr. Z sat down on the other side of the table from me, I was overcome with relief- something felt right. He looked over my lab work, looked up at me and said “wow, you definitely have Lyme.” Then he explained something to me that I knew little about…Lyme co-infections. He said I needed to be tested for these immediately. For the first time I felt like I had a doctor who could put my physical symptoms into words. He shined a flashlight in my eyes and asked if I had been having nightmares. I hadn’t even told him my full scale of systems yet. He asked if I had experienced being air-starved or if I crashed into a bed-ridden state after exercise or strenuous activity. He hit the nail on the head with everything he said. He explained that Lyme is caused by the genus, Borrelia Burgdorferi, but most specifically by a corkscrew shaped bacteria called spirochetes. The corkscrew shape of these bacteria allows the spirochete to drill its way into your neurological system, muscle and joint tissues, and internal organs. It is a multi system effecting bacteria. These corkscrews then start to ball up into a cyst that can not be killed by standard doxycyclin treatment. A different antibiotic was needed for each of the 3 stages of the spirochetes life span. The co-infections only heighten your symptoms and cause additional damage to your body systems and literally destroy your immune system. Each co-infection also require it's own seperate antibiotic treatment. I had a very long road ahead of me. At the minimum I was looking at 2 years to destroy the bacteria, God knows how long for my body to repair; and even then, there are no guarantees. I didn’t care; I was ready to fight, because honestly death was probably my only other option at this point.

Over the last year I have been on a cocktail of antibiotics including Doxycyclin, Azithromycin, Mepron, Rifampin, Cefdinir, Tinidazole, Ceftin, Tindamax, Septra, Suprax and probably more I can’t even think of at the moment (and I’m sure more are coming in the future!). Also, I’m on a ton of supplements both prescription like Nystatin and B12 injections, and homeopathic like probiotics, binders, vitamins, DGL, palio fiber and magnesium. I have to see Dr. Z every 6 weeks and do blood tests to ensure all my organs are functioning correctly with all these antibiotics. I’ve been lucky that my kidneys and liver have stayed strong through this whole ordeal. I have done an MRI on my brain which the neurologist was able to identify white spots on my brain that are seen in people with neurological Lyme caused by the Borrelia bacteria. Borrelias are unable to create their own fatty acids, so they gravitate to places on their host where high density fatty acids occur. In humans, this is commonly in the brain. The neurons in the brain are coated with these fatty acids. When Borrelia “nest” in the brain, they feed off these fatty acids and leave “lesions” in the brain. On a MRI, these lesions appear as “white matter lesions” and look identical to white matter lesions associated with MS. This is why I also believe there are many misdiagnosed neurological conditions! (Source: http://www.naturalchoice.net ) Lyme disease also severely affects the heart; it can cause heart palpitations, heart arrhythmia, congestive heart failure, myopericarditis, blocks and death by heart attack.

With each new combination of antibiotics I go through a horrible die off period for 2-4 weeks called a Jarisch-Herxheimer, or “herx” for short.  I would describe a herx as something along the lines of Sepsis. When the Lyme bacteria are killed they release toxins into your body and that can cause your whole nervous and immune system to flare up. Some days I feel like someone is using an air pump from a gas station to fill up my entire body. I feel like I am going to burst from the inside out. My joints ache, my head aches, my neck gets stiff, and I can barely lift myself out of bed from the overall fatigue. I can only imagine someone who has been hit by a bus could empathize with how it feels. At one point I lost complete control of my bladder and would go on myself at work and at home. This was probably my lowest point. And trust me on this- catheters are not fun! I had to start working from home on Fridays because my body could no longer function. I had pain in my jaw that felt like I had been punched by Mike Tyson and I had to wear a mouth guard to help with the pain (it didn’t really work). There would be times that one side of my face would become somewhat paralyzed, then it would travel into my arms, and then into my legs.  It was like an out of body experience: I could feel my brain telling parts of me to work, but these parts just wouldn’t respond quickly- it was like a slowed neurological “message” being transmitted to my limbs and face. Like my brain had to send a fax to my arm. I had weird patches of cold all over my hands, almost like little spots of frost bite. I developed flushed, rosaceous like patches under both of my cheekbones. My lips would blister from the fevers. My left shoulder constantly burned and would ache horribly- I could hardly sleep on my left side. My mouth tasted like it was coated with iron from all the medication; I was often embarrassed of what my breath smelled liked. I could also smell a difference in my sweat.

But after these periods of herx, I started to notice positive changes. My brain fog seemed to be getting better and I was no longer becoming disorientated or as forgetful. My sleep started to slowly improve, the nightmares stopped and the night sweats cleared up. I no longer needed to wear glasses as often as my vision started to improve. I could finally compose emails without jumbling my words up or putting sentences out of place. Physically, my headaches were almost non-existent and my neck and back were hardly ever in pain. I started to get more energy and felt like going out and doing things once again. Unfortunately I was still reminded I still had much more healing to go, because if I did go out and do something or exert myself too much, I would "crash" for 2 days. But slowly the crash became only one day. Now I can usually find myself feeling decent after a good nights rest (but it still varies as of today). My body is slowly getting stronger. I rarely get pain in my jaw and my paralysis is no longer an issue. The incontinence went away and I got my menstrual cycle back after about 4 months of not having it. The cold spots on my hands rarely ever happen and the fevers are at a minimum. 

It is now the end of September 2012, almost a year since first being diagnosed. In the last month I have returned to working in office full time. It is still a massive struggle for me to have enough energy to get to Friday, but I am all I have. My parents are seniors and not in a position to help me financially or care for me. Every once in awhile I receive some money from my dad or friends, but it barely covers a dent in the cost of my treatment. I’ve only been able to take oral antibiotics as I am not financially able to afford the more aggressive IV treatment. I dream of the day that I can afford to start doing detoxification treatments. I am thousand of dollars in debt from the years of hospital trips, doctor bills, and tests. My biggest struggles right now are overwhelming exhaustion, shoulder pain and constipation. Occasionally I still get migraines, nausea and leg pain. Because chronic Lyme disease is written off by the CDC as not a legitimate disease, many insurance companies won’t cover long term treatment. In fact Lyme disease is one of the most politicized, research lacking, and PATENTED diseases in the country. There are only 2 labs in America that offer effective Lyme testing: IGeneX (Palo Alto, CA) and Fry Labs (Scottsdale, AZ). Yet insurance won’t cover these test, they only will cover the out of date, 40% effective tests. The Centers for Disease Control admits that more than 300,000 people may acquire Lyme disease each year, a number greater than AIDS, West Nile virus, and swine and avian flu combined. And yet, the medical establishment—with profound influence from the insurance industry—has stated that the disease is easily detectable and treatable, and that “chronic Lyme” is some other unrecognized syndrome or a completely psychosomatic disorder. (Source: http://underourskin.com/)

Some days I feel like I am fighting the world with this. But I am continuing to get better, and I hope to one day be cured. I view much of my future in 2 scenarios: if I’m not cured, or if I’m cured. For example, if I’m cured, I will have children. If I’m not cured, I won’t have children. I couldn’t imagine being able to keep up with a child if I am still trapped by this disease. I can’t even imagine finding someone who would want to marry someone like me. I’ve watched friends go out and enjoy life, flourish in their careers, and start families. There are days where I feel like the strongest girl I know because I am still fighting the good fight, and still have the fire in me to beat it. I’ve heard of other “Lymies” that have had to go on disability, become wheelchair bound, or be taken care of by family. But then there are other times where I feel jealous and resentful of these people. Like I said, I support myself and some days I just want to be taken care of, or not worry about where I am going to get money for medication or my doctor’s appointments. It’s a constant up and down rollercoaster.

I think one of the hardest things about Lyme disease is that people can’t see it. “Lymies” look fine on the outside. Often times we are told, “Well you don’t look sick.” This makes my blood boil; I just want to say, “Yeah, well you don’t LOOK stupid.” But I understand that people just don’t really know or understand the disease, and one thing I’ve learned from this; the world doesn’t stop for the sick. I would say one positive with having Lyme disease is that I’ve learned to be a lot more empathetic to those who are sick and disabled. I remember constantly rolling my eyes at my grandmother who struggled with Type 2 diabetes. I didn’t understand what the big deal was, I wasn’t patient when she couldn’t remember things or move fast enough. The past year of my life has been a real eye-opener in terms of how I acted. I live with regret everyday. But also thankful of my new found awareness.

In closing, I do not know when I became infected with Lyme disease. I grew up in a rural North Idaho community surrounded by heavily wooded areas. My dad was an avid deer hunter and would always bring back the dead deer to our garage. A dead host is useless to a tick, so they will jump ship and look for their next place to feed. When I was 18 or 19 years old, I remember feeling a bite on the inside of my left calf. I thought it was a spider bite, and I can never recall to this day ever seeing a tick in my life. I now know that some ticks are the size of the tip of a nail. But over the course of the next day or 2 the bite got increasingly more red and I started to try to squeeze it. Finally it got to the point where I could barely walk on it. I figured it was from me messing with it. I showed my dad and he was convinced I was bitten by a brown recluse spider and took me to the doctor. The doctor didn’t think it was a big deal and sent me home with a bottle of antibiotics- I honestly don’t think I even finished the bottle. A tick bite was never suggested, and Lyme disease was something “east coast” people got. Today we know Lyme disease can be found in all 50 states, the tick population is growing and humans are increasingly moving into their habitat as the population swells and housing developments flourish. It is also theorized that Lyme and its co-infection can be found in other vectors like spiders and mosquitoes.

There is a movie called Under Our Skin that we “Lymies” like to call “our voice.” The free Hulu link is below. I encourage you to watch it and learn more about chronic Lyme and co-infections. It gives a lot of insight into why we are shunned by the medical community, who is being paid to write the Lyme guidelines for the CDC and why insurance companies don’t want it to be declared a chronic disease. http://www.hulu.com/watch/268761

Thank you for reading.

View more

Supporter activity

Login to post a comment
or Login