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.


Robin McClain
About Robin

I was bitten by a Lone Star tick in April 2010 and had a target rash that covered my hip. I started having flu-like symptoms and went to a physician office and had lab work. I was not treated at the time and later results, being negative, I received no antibiotics. I had a pretty severe GI illness in 2009 with many symptoms, including myalgia and although the GI illness got better the myalgia got worse. I was hospitalized 5 times between 2010 and 2013 for various reasons. Finally I went to a LLMD, had labs by I GenX, and was diagnosed \\\\\\\\\\\\\\\"positive +++\\\\\\\\\\\\\\\" for Lyme; I also suffer from 2 co-infections. Now I\\\\\\\\\\\\\\\'m in treatment... it sucks, but I look forward to getting my life back, hopefully soon.

Saint Louis, MO, US

Lourdes Anaya
About Lourdes

I became I\'ll in May 2009 diagnosed with Rheumatoid Arthritis and started treatment immediately I started taking anti-Inflammatories, Prednisone and Methotrexate. Then followed Biologic treatment s like Humira, Cimzia and Orencia. After so many medications and no improvement I changed doctors and went to Johns Hopkins Medical Center seeking a new diagnosis. After reviewing my medical records they said in in deed had RA. I was under their care for about a year and a half. They suggested Ramicade and I started treatment in April of 2011. After my third loading dose in which my dosage had been doubled 36 hour later I woke up with a severe swollen throat and tongue. I called my doctor at Johns Hopkins and I was told it was not a reaction and I was to continue with MTX as usual. The swelling in my throat lasted for 6 months and the swelling in my tongue and pain I feel is still there even now. Changed Rheumatologists in August of 2011 and after running all Rheumatological tests she told me my DS-DNA was 118 I found out that day I had Lupus as well as RA. I continue to be sick to the point of not being able to get out of bed until I decided to seek my current doctor and go with Alternative Medicine. In October of 2012 I was diagnosed with Lyme Disease.it was never RA or Lupus it was always Lyme. I was on the wron treatment for almost 4 years.

Woodbridge, Va, US

Jenn Kerr Gaspar
About Jenn

While the path to Davidís recovery is finally clear, the family has completely exhausted its financial resources and borrowing capacity. David has applied several times to the health care system for funding for his treatment outside of the country but his applications have been turned down. Donations can be made directly through http://www.gofundme.com/davidmagnussen Your financial help, whatever it may be, can make all the difference to David's recovery. We graciously thank you for your support, love and hope. Jenn Kerr Gaspar

Saskatoon, Saskatchewan, CA

Sara Gamelli
About Sara

I was diagnosed with Lyme Disease, Bartonella, Babesia, Erhlichiosis, EBV, Mycoplasma and HHV6 in March of 2012. I was practically paralyzed a year ago, and have had a picc line, which had to be pulled due to an infection and blood clot. It took me over 30 ER trips to diagnose my Lyme Disease, and over 20 doctors after having an abundance of random symptoms. I have made many improvements, but I am still fighting, and I am still on treatment. I wish to become an ILADS Social Ambassador because I wish to donate my whole life to this disease. I am an active member in the lyme community both on facebook, twitter, and I am an official advocate on MDJunction. I am willing to donate all of my time towards creating awareness for this disease, and I am going to school to become an aspiring nurse and EMT. I eventually want to become an APRN, but I will always donate every second I have to promoting awareness and helping people with this disease. Thank you.

Durham, CT, US

Shannon Martinez
About Shannon

I was infected by a tick bit in 2014. I immediately noticed the typical bullseye rash associated with Lyme Disease and I became extremely ill. I went straight to an infectious disease MD who ran labwork and started me immediately on oral antibiotics. I was notified by not only my dr, but the CDC that several parasites were detected, one very rare. My Lyme test came back \'borderline\'. My Dr treated me for months on oral meds however my immune system failed and she referred me to specialist after specialist. Within a year, I went from working 49+ hours a week as a cardiologist Assistant to being bedridden. I have encephalopathy which has affected my memory and cognitive function. Joint, back, and muscle swelling. Migraines, with nausea & vomiting which caused me to lose over 25lbs. It has within 2 yrs affected my Liver, Kidney, Heart, skin and brain. I have a severe \'Lyme Rash\' that has scared my skin on both arms and legs. Worst of all, I have a 10 yr old son to care for. I have lost my apartment, job, income and livelihood due to this disease. I have no other option that the IV treatment which is 6 hrs daily for at least 3 months. Which is about $2,000 a week. I live 15 min from NYC, and went to renoun hospitals such as Columbia,

Bloomfield , NJ, US

Shawna Griffith
About Shawna

I was diagnosed and treated for lyme disease as a toddler. My parents didn't realize anything was wrong until I could no longer walk from the joint pain and inflammation. I was treated by my pediatrician who, thankfully, was ahead of his time with his knowledge of the disease. Unfortunately, I am now certain that I have lasting effects and I'm probably fighting chronic lyme. I have headaches, arthritis, tremors, memory loss, and carpal tunnel, just to name a few and I'm only 31 years old. I want to raise awareness of this disease and help others so that they don't have to go through what I went through and am still fighting to this day.

Jackson, Michigan, US

Shay Faulkner
About Shay

I work in the animal care and control field. I deal with wild and domestic animals and their diseases on a daily bases. I pulled a deer tick off of my neck at the end of April/ beginning of May of last year. I\'ve had classic symptoms ( bulleye rash, extreme fatigue, memory loss, flu like symptoms, sleep disturbances, muscle spasms, night sweats. ..) within 30 days of exposure but I can\'t get anyone in the Kelsey Seybold network to test or treat...I had to pitch a fit finally shaming one of their \"specialist\" to testing my lyme titer. The results are outside of the negative range but they are calling it negative. Is anyone else having this problem? I asked my HR to help me file a request to go outside of network, which she did. The Doctor over the review board said,\" yes, you need more testing\"...they scheduled an appointment with a contracted infectious disease specialist. The Doctor of the review board spoke with him personally and gave assurances that the lyme testing and treatment would happen. It took a month for the appointment. I went and again I ended up leaving in tears. Their specialist said \"that on your titer is negative so you don\'t have Lyme Disease and never will...after all it doesn\'t exist in Texas\".

Sugar Land, Texas, US

SILVIA TOBIN
About SILVIA

I live in Mexico. I was diagnosed with Lyme Disease in Oct 2015. No doctors here test coinfections. I was not told anything about them. I kept feeling really bad. A friend told me to see Dr. Stricker in San Francisco, CA. I went to see him and got tested for Lyme and Coinfeccions through IgeneX and learned I also have Babesia duncani. Here in Mexico doctors don{t know barely anything about Lyme disease and its coinfections. I am letting doctors know about it and they are very interested in sending doctors to become LLMD part of ILADS. I want to be an embassador too. I am doing everything in my power to help raise awareness. My kids have jut been diagnosed with Lyme and Babesia as well. They are 4 and 8 year old. My e mail is silviatobin@hotmail.com Please help me out! Thanks!

San Pedro, Garza Garcia, NUEVO LEON in MEXICO, MX

Diana Pearson-Barnett
About Diana

I am interested in becoming an ambassador for Lyme Awareness due to the lack of acknowledgement throughout the United States. I was diagnosed with Lyme when I was sixteen and have been dealing with it for the past fourteen years. This is a debilitating disease that is not only misunderstood, it is not recognized. I am currently living in Colorado and am shocked by the responses of physicians when I was seeking medial help. They refused to admit that it could be present in this state, even though many relocate here from other areas. There are many people in this area who responded with \"What\'s that?\" when I said I have Lyme Disease. I want to help raise awareness to the prevention and treatments for Lyme Disease.

Vail, Colorado, US

Sandi Bohle
About Sandi

I\'ve probably had Lyme Disease since 2004/05 when I first started noticing issues. I have worked in the entertainment industry for close to thirty years as a lighting designer, technician, stage manager, and production manager. It is an extremely physical & psychologically taxing industry. I have Late Stage Chronic Lyme Disease. My world came crashing down July 4th, 2011, a month after returning to Los Angeles. I have gone thru the emotional roller coaster of stupidity, doctors, tests, of being diagnosed. My intuition said Chronic Lyme. In October of 2011, I found my savior. The Doctor knew intuitively after sitting with me for 1/2 an hour that it was Lyme. I have been with her ever since. I can\'t work. I have not worked since December 2011. I have lots of bone, joint, nerve, & muscle pain. The Lyme has settled in my central nervous system and brain. I have suffered the debt we all go thru with paying out of pocket. So step by step, I continue on trying to care for myself the best I can, while the medical community tries to decide if what I have really exists. I want to lead the way out of the darkness. I am constantly spreading the word, helping those new to the disease, and was the co-coordinator of the Los Angeles events that w

Santa Clarita, CA, US