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.

Jay Esposito
About Jay

Lyme F\'d me probably as early as 1990-1991. Never did anything medically about it until 2004-2005. C6 Peptide and spinal tap were off the charts and Infectious Disease stepped right in at the Hospital. I just thought I was dead tired all the time at age 30 something, that\'s normal right?. PIC line for 30 days (ceftriaxone). End of treatment. Man you have no idea of bad far south it has gone since that PIC line came out. Maybe you do, exactly...know..I don\'t know. But I have gone from bad to worse. 45 now, feel about 80 or dead as a norm. Now have MS symptoms that are brushed off as psycho-somatic or age-related disorders. I don\'t have LLD\'s in my area or they have been told put the \"hush-hush\" on it by \"BIG However\".. Really have no where to turn. Brain function/fog and muscle rigidity are extremely oppressing. Fine motor skills are fading. Cognition is at risk, which is occupationally hazardous. There is so much more, but I am such a wreak that I can\'t go on right now any more. This email alone took an hour to complete because of the un-coordination that has developed in my lower limbs, including fingers.

Danbury, CT, US

Ilene Morris
About Ilene

Having suffered with Chronic Lyme for 15 years, diagnosed 5 years ago, we need to bring change if there is any hope for a cure for our generation or the next. There are so many complexities of the disease, the only way to help yourself and others is to share the knowledge we have gained on this long journey to some level of recovery. There is so much anger, depression, disparity that comes with this disease we all need to bond and help support each other emotionally to make change happen and hold those accountable for the unnecessary additional emotional and physical pain chronic lyme has brought to our lives and warn the innocent of the severity of the disease by education. My Ambassador picture is in loving memory of my 2 year old dog that died from Lyme complications.

Wharton, NJ, US

Kathleen Murphy
About Kathleen

I work and live around lots of people who struggle with Lyme disease and want to learn how to help.

Salt Lake City, Utah, US

Kayla Burch
About Kayla

I have been fighting Lyme Disease since 2009 it has been a long battle and in 2012 I became symptom free. I have recently fell ill to the disease again while pregnant with my third child. I want people in my community and everywhere to understand the struggles of Lyme and all of its coinfections as well as help others in their fight. I am doing a fundraiser next month to help raise money for Lyme.

Seminole, OK, US

Kelly Capitini
About Kelly

Bitten in 1996. Within 2 wks I was in hospital. RX only 2 wks of antibi. I was 80% better. I asked for more. \"NO\", my tests are neg. and I had too many symptoms that don\'t match the CDC L.D. guidelines.I was referred to an Infec. Dis. dr..(didn\'t do any good to see dr.She said L.D doesn\'t cause my symptoms.) Dr. wouldn\'t see me 4 a month. Within one month. I no longer walked without assistance,fever, fatigue, unbearably horrific pain. My spine was being pulled out & my head felt swollen,Severe eye pain, incontinence, loss of bowel control, legs would collapse, extremely constricted muscles,100\'s of muscle spasms, numb hands & feet, cognitive impairment so severe I could no longer drive,or cook for myself. I lost the ability to read, write or follow a conversation. swollen joint/bone on bone pain.Insomnia,heart issues,,couldn\'t get enough air into my lungs etc.,etc.I saw MANY dr\'s. 1998 IGenx test showed pos. still no one would treat me. 2002 dr in FL TX w/Cholestyramine &antibi.18 mnths. took away suicidal pain, neurolog. & joint issues. 2015 I still suffer w/ debilitating

Bradenton, FL, US

Paul Chan
About Paul

My name is Paul Chan. Up until a few weeks ago I had only heard of lyme disease here and there and I never took it that seriously. A few weeks ago I met someone who has it and that\'s when I took a deeper interest in it and wanted to try and help that person.

Moran, Wy, US

Katharine Klipstein
About Katharine

I have had Lyme disease and various coinfections since I was a kid. This disease was only diagnosed June 2010. I have spent a lifetime suffering. After four years of treatment, my brain is beginning to churn again and come up with some original thought. It is no longer a blank, empty canvas. My mother has this condition and some very close friends. Many years ago in college I started a couple of grassroots campaigns. I have experience rallying troups and getting the word out and welcome the opportunity to do the same with Lyme disease.

Somerville , MA, US

Kathie Scott
About Kathie

After 50+ years of being very healthy and active, I became ill in the Spring of 2005. There were odd, random symptoms that did not make sense. Summer was worse. Fall and back to work (I am a teacher) average infections, treated with antibiotics, and then came the debilitating headaches. I needed sunglasses inside and out. Could not rest, work, achy body, etc. Many docs said I was depressed, had fibromyalgia, (I detest that word nor can I apparently spell it! Who cares?) and after about 15 docs, and almost a year, I heard the word Lyme. I looked it up. It was me for sure. All of those odd symptoms were on the list. Found a good doc two states away but his partners would not allow him to treat me longer than four months. Finally I hooked up with my state support that I had never known existed. they were wonderful. Now I have a fabulous doctor who also has suffered with Lyme so he really understands. His knowledge is amazing. I help support others through our state organization by phone and some occasional meetings. If I can do a little more, I am so blessed that I really want to be able to share and help others.

Gladstone, MI, US

Kristin Carmen
About Kristin

My journey with Lyme Disease started in my childhood, progressed during my teenage years and young adulthood and in my mid-twenties started to become debilitating. I am now 44 and never heard of Lyme until a couple years ago. After the birth of by first child, the true affects of Lyme Disease became apparent. I had numerous neurological problems, blood work abnormalities, arthritis and severe fatigue. Later I had periodic hemipelgia, migraines and stroke-like symptoms and the doctors were quick to attribute the symptoms to depression and somatic illness even though I had not been depressed because testing came out negative for neurological disease. Then my thyroid crashed, I had another mini-stroke and MRSA, then heart infection, then mitral valve sclerosis, then kidney nephritis, then liver/spleen swelling, then diverticulitis, etc. Something was attacking my organs so the doctors opined that it was Lupus. Granted the Lyme testing was the only thing coming up positive, but the doctors believed that the Lupus was causing a false positive on the Lyme test over and over again. Then I went blind and had dementia. Finally they treated the Lyme and I am doing well.

Ocean City, NJ, US

Kate Rokosz
About Kate

I have a 25 year old daughon short term disability due to the dibilitating effects of lyme disease. This is heartbreaking to me. I had no idea how devastating Lyme can be and I\'m disappointed in the lack of local resources available for raising awareness and funds. I have a stong presence in my community and want to use this to help my daughter and everyone else suffring through this awful disease.

middletown, delaware, US