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.


Shannon Martinez
About Shannon

I was bit by a tick in August 2014 while at a petting zoo with my son. I developed a classic bullseye rash on my right arm with satellite rashes. A family friend works closely with the well known Dr. Burascano and advised me exactly what steps to take. Within 7 days I was desthly ill. I saw an ID md who treats Lyme. She tested me for Lyme and co-infections. Lab results were positive for Babesia, Anaplasmosis, and Erichliosis. My Lyme ELsa and Western Blot were \"borderline\". My body slowly began to deminish as labs showed organs being affected. I was treated for the parasitic infection by oral antibiotics. However, I still was declining. Within the past 2 years I have seen about 30 Drs. Many of them specialists. Some out of state. As of now, I was dx with chronic neuro Lyme. Spinal taps confirmed my brain is infected. My parasites seem to be dorment. However, throughout testing Drs discovered I also have WestNile Virus. As of now, I am seeing one of the best LLMD in the country. I know the neuro damage is most likely non-reversible. I am battling insurance to cover my IV Theropy which I desperately need. I lost my career, apartment, and social life because of this illness. I am not able to care for my son the way I did.

Glen ridge, New jersey, US

SHEILA STEPHEN
About SHEILA

BULLS EYE RASH ... NEVER TREATED.... I have learned to live with Chronic Lyme Disease, a flare up means antibiotics, weariness means rest, it all means learning a new patience in life and still living my life with this disease but loving this one life I have anyway.

Lake Country , BC, CA

Lynn Seybold
About Lynn

When one thinks of western Pennsylvania one thinks of woods, after all, the name literally means \"Penn\'s Woods\". In the rolling hills of the southwest of the state is Pittsburgh, a beautiful city with neighborhoods in the nooks and crannies of the hills. I can walk to the downtown area, yet I have seen deer a couple of blocks away near a park. I knew I had a rash but in 1989 I was not medically trained then and did not recognize it for the classic Lyme \\\"bulls-eye rash\\\". Nor did the doctor to whom I went to see after a trip to Maryland and hiking around on a horse farm that hot July. It was the classic shape approximately 6cm long and 3cm wide located at my left lower rib area. I was told it was from a plant.. I had never had a plant related contact allergy or problem before. I later had a diffuse rash across my chest and was told it was related to \\\"hormones\\\" and adult onset acne. I had positive titers for Lyme and RMSF 13 years later. So why wouldn\'t we have Lyme here? Did they expect infected ticks to stop at Nittany Mountain? Nature does not work that way. Survival of the fittest by adaptation and mutation. We see it every year during flu season

Pittsburgh, PA, US

Mariah Wilson
About Mariah

Not even sure where to start.. currently I am awaiting my 4th Dr. APPT. DEC. 4th..again..I sent my blood work out to be tested at IGENEX..for the western blot test after having a Dr.s. Visit blood test done 1 1/2 yrs. Prior..(which was neg.) IGenex came back pos. For lyme & Babesia. Will be undergoing my 2nd round of antibiotics.. As the 1st brought on major allergic reactions!

epping, n have, US

Mari Callahan
About Mari

For the last 7 years, I had been struggling with a mystery illness that was wreaking havoc on every organ system in my body. I struggled to think, see, talk, move…I struggled to live. My heart started to pound, I would lose my sight suddenly, I would pass out and fall frequently. I knew that something was wrong, but every doctor visit, every visit to the ER, and every hospitalization resulted in nothing. I have had to come to grips with multiple diagnoses and thoughts that something scary was happening to me for weeks at a time. There was brain tumor dx, heart arrhythmia, MS, Parkinson\'s, abnormal vascular structure in my brain, Lupus, autoimmune hepatitis, and, my personal favorites: you are a drug addict, you are crazy, or you are just seeking attention. It has been hell these last seven years, watching myself dwindle down to barely anything and feeling like I was slowly dying and slipping away from everything I loved. There was nothing I could do about it.But I didn\'t stop. I kept fighting. I kept fighting because I am a mother, wife, daughter, sister, and human being. I finally found a doctor who tested me for Lyme 3 months ago and it was positive. I want to fight for others who are fighting to survive like me.

Goleta, CA, US

martha conan
About martha

In July of 2012, I was diagnosed with Lyme Disease i after 10 years of misdiagnosis. I was labeled with Spinal Stenosis, Hypochondria, insanity, drug seeking and so on. When my spinal doctor told me that I either had MS or ALS, I took the bull the horns and decided to explore what was really causing my neuropathy, brain fog, constant pain and fatigue. When I was finally diagnosed, the treatment was tough to say the least and is still ongoing, Becoming an ILADS Social Ambassador would mean the world to me. Last November I decorated a tree at our holiday event in Syracuse, NY and the theme was Lyme awareness. Next week I am spear heading a Lyme event with the help of my Lyme support groups wherein we will be presenting \\\"Under Our Skin\\\" and invited Dr. Danial Cameron to speak. On September 14th, my support group will be hosting a bike event with the help of TBDA, Tick-Born Disease Alliance, in Chittenango, NY to raise money and promote Lyme Disease awareness. I am also planning a Lyme event at one of our local hospitals next May that will involve local physicians. Being a mental health therapist, I live to help people, I know how much it meant to me when my support group embraced me with openness and love.

camillus, ny, US

Vanessa Martinez-Campos
About Vanessa

In June of 2013, I came down with a flu that was preceded with symptoms I had never had before: I was dizzy and experienced mental confusion and joint pains. The flu progressed into something I knew was not normal - I was horribly sick for several weeks, with head pressure, unexplained bruising, severe vertigo, tachycardia, fainting spells, rashes, and other symptoms I felt were associated with a tick bite. Despite being told I lived in a region without Lyme or other major tick-borne infections, I continued to search for a doctor that would test me appropriately. Through ILADS, I was able to find a doctor within my area that has diagnosed Lyme, RMSF, and high mycoplasma. I am currently in treatment, and after three months, I have seen my CD57 numbers triple. Though I am nowhere near close to being finished or well, I know I am on the right path, and that is only thanks to the work of ILADS. I am looking to help join this fight for the people in my area, and for children, as I believe my daughter is infected as well and needs more resources for care.

San Antonio, Texas, US

MaryAnn Mazzarella
About MaryAnn

In 2006 woke up one day in extreme pain and the use of half my body, my life change ever since. I did see two rashes a month prior but had no idea what they were. 3 years passed and while getting most of my body back, except partial right hand, the new pain started all over and seizures. I knew something was seriously wrong and kept getting misdiagnosed. By my own research, I figured out, it was Lyme. I told my pm Dr to test me and came back with Lyme, Babesia, Bartonella and Rocky Mountain Spotted Fever. This was the beginning of numerous treatments and spending a lot of money. Couple years later I found out I lost my immune system and had sever mold poisoning and have been dealing with that and permanent organ damage since. In 2014 upset by how many people were being misdiagnosed and not understood by friends & family, I started a campaign, Be Kind for Lyme. It is to spread awareness while inspiring acts of kindness.

Laurence Harbor, NJ, US

Mary Barry
About Mary

My lyme journey began 7 years ago when my then 12 year old son got a tick bite with a bulls eye rash and was treated with 3 weeks of doxy after becoming very ill. For the next 3 years I went to rheumatologists, neurologists, orthopedists and endocrinologists to figure out my son\\\\\\\'s illness. No one could help me ( and several implied that I was a muchousen mom) until I went to Dr. Sam Donta who eventually diagnosed Mike with chronic lyme disease. Since that time my son has ben treated by Dr. Bernard Raxlen for Lyme and other coinfections and presently, as a 20 year old college athlete/student, has a Picc line this summer. My son\\\\\\\'s life and our family life has been altered because of this disease. I have another son who also has Lyme with 2 different coinfections and a daughter who was recently diagnosed. Fortunately, Dr. Raxlen is treating my family now and we are having some success. In addition to the Picc line, we have done Bicillian shots, various oral antibiotics, homeopathic and holistic alternatives including herbs and acupuncture. I want to be a social ambassador because I know about the lyme journey amd feel passionately about the cause.

Sudbury, Massachusetts, US

Mathew messbarger
About Mathew

im a lucky one, i guess. I was diagnosed with lyme in Nov of 2014. I say lucky because i had only been to my PCP a handful of times before testing positive. I was so extatic all day at work to finaly have some answers to my symtoms. Then i got home and did my research...i was shocked. For the next month i immersed myself in research. My PCP treated me for about a month with some antibiotics. She reffered me to a total of 3 infectious disease doctors who all denied to see me. All this time i was not getting any better. The headaches were debilitating, my muscle spasms were getting worse. I was told i needed to seek a LLMD. I just so happens that one is in my area. Private pay, lots of tests, and a small fortune later i still feel terrible most days. currently being treated for EBV, HHV 6, mycoplasma, bartonella, babesia, lyme, strep of the brain and probably a few more that my lyme brain cant remember!

olathe, kansas, US