Social Ambassador Profiles

These amazing people have taken on the task of being LymePowerOfUs Social Ambassadors. They are dedicated and passionate and want to transform that dedication into actions that increase awareness of Lyme disease, raise funds to train physicians and support LymeTap, and put an end to the growing epidemic of tick-borne diseases. Their stories are sometimes heart wrenching, often very sad, but more often than not filled with inspiration and hope. These are the faces and stories of people that are making a difference. Find out how you can join them.


Bill Prior
About Bill

My mom got Lyme disease when I was 8 years old. I am now 34. It affected my childhood in a huge way and basically took my mom away from me emotionally for long periods of time. As i grew older I watched how this illness affected her and how hard she struggled. When I was young I was hurt and angry. As I've grown older I see how hard she tried to be a good mom while being sick all the time and how incredibly hard that was. Now i am sad for her that her life has been so difficult. I want to do all I can so that another child does not have to go through what I went through. People forget that it's not just the person who is sick who is affected by this illness, but the entire family. It is crazy the controversy around Lyme and it is destroying people's lives. I want to do all I can to make sure others are diagnosed and treated quickly so that Lyme is just a passing moment in their life, not the ruination of their life.

Los Angeles, California , US

Alfonso Florentino Pérez-Embid Atalaya
About Alfonso Florentino

Hi there, to save up some space, this is me: http://www.mdjunction.com/forums/lyme-disease-support-forums/general-support/11338192-my-lyme-story I am a 25 years old computer scientist from Spain, before my illness, I was specializing on Artifiial Intellience, and Cybersecurity, and also working full time a Cloud Hosting sysadmin and a Full Stack web developer in Bristol (HelloFutu.re) I am now working on 20 projects concurrently and trying to help ALCE (spanish Lyme association) as much as I can, but also I am doing some projects like: - Translating with my own voice \"Under our skin\" documentary to french and spanish - Writing an autobiography which will be freely downloadable on my future website (lyme-spain.org), and of course will promote this association as MUCH AS I CAN - Doing an SPECT playing chess with a top neurologist in parkinson\'s world and then another one after 2 years of my self-treatmnet to correlate mental activity - Much other things it wil ltake me forever. Just wanted to say I am here to fight

San sebastian, Guipuzcoa, ES

Crysta Sotirhos
About Crysta

I was formally diagnosed with Chronic Lyme and a co-infection Babesia in January of 2013 and am still going through treatment. While I\\\\\\\'m having some good days now, every day is still a struggle. I realized very early on that there is a special kind of loneliness that comes from having such a controversial chronic illness such as Lyme Disease. Doctors that are not Lyme-literate make patients like myself feel, from the get-go, that we should be ashamed of ourselves and our illness because it does not fit today’s conventional model. This tends to carry over into personal relationships. I can’t talk to friends and family about my illness because there’s a total ignorance surrounding it. We’re essentially forced into silence, which, when combined with how crummy we feel on the inside really doubles how difficult this journey is. I want to, in any way possible, raise social awareness for those who struggle on a daily basis so that no one feels as if they are alone.

Hillsborough, NJ, US

Dawn Zauner
About Dawn

I started experiencing symptoms of Lyme disease a couple weeks after one of my mission trips to Haiti. My health quickly began to fade and over a two-and-a-half-year period I have seen 3 General Practitioners, 1 ER doctor, 1 Infectious Disease doctor, 1 Neurologist, and 2 Rheumatologists. All of which ran tests, including the standard Elisa test for Lyme disease, but everything came back negative so they couldn’t figure out what was wrong with me. After being told it was not Lyme disease, not an infectious disease, possibly cancer, possibly an autoimmune condition, and told to see a psychiatrist, I decided to do my own research on my symptoms. Everything I read on my symptoms pointed me back to Lyme disease, so then I did more research on Lyme disease and eventually found ILADS.org, which referred me to an LLMD (Lyme Literate Doctor). Now, three years and nine doctors later, I am finally starting treatment for Chronic Lyme Disease. I want to help raise awareness of Lyme disease and help raise funds to train doctors on Lyme disease because no patient should have to have to waste time and money on seeing multiple doctors who are unfamiliar with the disease before they can finally get help, all the while getting sicker. The number of Lyme patients are growing at 34 cases per hour, there needs to be more doctors trained on Lyme Disease than that per hour in order for those patients to get adequate treatment.

Myrtle Beach, South Carolina, US

Desi
About Desi

My name is Desi. I became very sick in 2001, they gave me different missdiagnoses like CFS, FM etc. In 2013 I went to Prof. De Meirleir. He found Lyme and co infections. He started the ILADS treatment and after 1 year and 2 months I felt so much better! I'm finally relieved of my septic shocks. Thanks to the ILADS method! During the IV period I really had the desire to spread the word about ILADS and Lyme. I didn't want people had to go trough the same thing as I did. I started my page in the Netherlands and my page is still growing: https://www.facebook.com/ziektevanlyme Every week I get so many questions about Lyme and how they can solve their problems. I always show them the way to an ILADS docter and the tests they can do. I also started the Lyme disease challenge facebookpage for the Netherlands and Belgium. I hate to see how patients are suffering and dying unnecessarily, having no money to get a proper treatment, having no income because chronic Lyme would not exist and are getting all kinds of missdiagnoses. Thats why I started one of my projects where we sent a letter to the king/goverment by a lot of people in the Netherlands and Belgium with all the evidence based on science: https://dekoninklijkelymebrief.wordpress.com/. They have read all the facts about this epidemic. At the moment I started a petition to change the current guidelines into the ILADS guidelines. If we reach 40.000 signatures the government will have to discuss the ILADS guidelines. You can also sign this petition at https://iladsvoorlyme.petities.nl . I will continue my fight for justice!

Arnhem, GLD, NL

Karen Mullins
About Karen

Lyme has been in my system for over 35 years. Symptoms can change on a daily basis. To many to list here. I got the H1N1 in the summer of 2009 from an passenger, I was a city bus driver. That was the catalyst for my applying for disability. ~ WE DON\\\"T have ticks here in Pinellas County, Florida, so I was never tested for it. I have had 12 surgeries, cancer and nearly died of mycoplasma pneumonia. I look forward to waking up in the morning, I am so happy to start the day, but my body says that there is no way out of the bed. I have vertigo so bad that I get too dizzy to walk. Not a good thing. So that\\\'s my story and I am sticking to it!~Colin Quinn, SNL

Dunedin, FL, US

Elisha Goulet
About Elisha

I have suffered from chronic Lyme disease for over 15 years. I also have a mother and a father who suffer from this disease and I would like to be able to help others find a correct diagnosis and find hope from their suffering. I have personally struggled to find a diagnosis for all the symptoms I have suffered from over the years and just recently have discovered that all my suffering stems from Lyme disease and possibly Bartonella. I hope to be able to be a social ambassador and advocate for others and to educate people on the epidemic that many are not even aware of that is affecting so many families in so many ways.

Clinton, - Select -, US

Eli S
About Eli

I want to better help people understand the seriousness of the disease, so that they can protect themselves.

Albany, Ny , US

Geoffrey Chegwidden
About Geoffrey

I contracted Lyme in late 2010, in the Great Barrington, MA area. I woke up with a tick in my left chest, and one on my right shoulder blade. Knowing nothing, I waited about three months and decided to get a blood test, due to major joint pain and mobility problems. The test came back negative, so i struggled on for another three months. When I got so bad i could hardly continue, I got another test, and finally got the positive test. Three weeks Doxcycicliene was the initial prescription, as my primary doc was on vacation, so i saw another person in his practice. I got another week Doxcy when he came back. That was my treatment for the illness for about a year. I later found natural approaches, like "Spironil" (Teasel root), and a couple others from a local chirophractor. Managed to make it until spring of this year (2013), where i started getting really bad symptoms. I found a doctor in Milford, CT. He has helped me since, with a continued anti-biotic regemin, and now am switching to Banderol, and Samento. I deal with so much anger and depression due to this illness. most of the anger comes from not having informed myself. I feel strongly, if I had known more, I would have not put myself at so much risk. I already act as a bit of an activist, trying to remind people basic steps to protect themselves the best they can.

New Haven, ct, US

Virginia Walcott
About Virginia

I had an embedded tick removed by laser in the Emergency Room of St. Luke's Hospital in Middleboro, Massachusetts, approximately 28 years ago. I was prescribed two weeks of amoxicillin at that time. I believe because of that under-treatment, I have been suffering with too many systems to list for almost 3 decades. I am now completely disabled. Every movement is painful, every joint, muscle and ligament has been affected by Lyme. My sleep is even torturous some nights. When I awake, my body feels as if I am 100 years old. I was prescribed varying oral antibiotics for a total of 1 year, which resulted in severe gastritis, which I deal with on a daily basis. The major complications of lyme for me are: Squamous Cell Carcinoma, Vasculitis, Osteopenia resulting from 1 year of steroids for the treatment of Vasculitis, Trigeminal Neuralgia, Peripheral Neuropathy, Valvular Heart problems, Appendectomy for gangrenous Appendicitis, Osteoarthritis of spine&extremities, disc herniations, Fibromyalgia/CFS & company. My ELISA was positive and 6 bands were positive by Western Blot. Medicare denied IV antibiotics. In summary, if my story helps just 1 person get a proper diagnosis and early treatment, then it is all worth it.

Ellijay, GA, US