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.

Tami Griffin
About Tami

I have had Lyme and co infections for over 14 years. I currently host a support group in my home two days a week. We meet in my home for a comfortable place to meet and we meet twice a week since so many people who have Lyme only leave the home for doctor appointments. Here is an article that was in the local paper about our Group: I am will be taking classes at the local community college so that I can become a Lyme Advocate. We need people to speak for us when doctors dismiss us and turn us away. There is little that hurts more than that feeling of betrayal, dismissal from your beloved and trusted doctor when you KNOW something is *very* wrong. I do not want to receive from someone saying, \"Thank God I found your Group! I thought I was nuts! I was considering suicide.\" Our doctors should never make us feel this way...

Frederick , Maryland, US

Jackie Gruenes
About Jackie

My husband has chronic Lymes and was recently diagnosed with Babesia. I am deeply motivated to help spread the word about Lymes since I am finding out how often it is misdiagnosed and generally there is little awareness.

Cary, Il, US

Lauri Malolo
About Lauri

I was misdiagnosed with psoriatic arthritis in 2009. It took me three months to decide to start taking Enbril, a terrible immune suppressing drug. I was having a hard time walking. My right eye pain was getting worse. My hands were crippling.Not to mention the pain, fatigue, forgetfulness, brain fog...etc.. My dermatologist was psoriasis had moved to my joints. The next three years my life and my health began to crumble. Many illnesses and even vein surgery to \"cure\" my leg swelling took place over those years. I escaped the last doctor telling me \"I needed\" sinus surgery after I had reoccurring \" sinus infections\". I was so tired of being sick and so tired of not getting answers or being told \" I needed another antibiotic\" that I reached out to my sister in laws cousin. A naturopathic nutritionist. She completed an assessment and graphology analysis. Mother\'s day 2012 is the day I called her and the day my life changed for the better. My journey has not been easy but I will recover. After 8 months of achieving enough stabilization we started to treat my chronic Lyme disease. Lifestyle and diet changes are ongoing and have changed my life forever. I will recover and I will share my story with all.

Gilbert, Az, US

Guy Sjo
About Guy

(Chronic) Lyme disease, suffered 7 yrs before diagnose.

Nykarleby, Finland, FI

Heather Rotondo
About Heather

Lyme has taken the life I knew away. Have been dehubilitated sick for a year. The journey of Lyme and all the politics and controversary seem to make it extremely hard to get better. My organs have been compromised and of course my brain. The piece I need the most and can\'t believe what I know longer know or can do. I absolutely understand the suicides. Although suicide is a sin, I am sure many have turned from medical to faith with still no answers. I wish I could write more but hands and brain are done. Thank you.

Cornelius, Nc, US

Sandie Heckel
About Sandie

My daughter began treatment for Lyme Disease in April 2012 and is starting to get better after being ill for 4 years before her diagnosis. Her story is a familiar one: a rash that was misdiagnosed followed by an onslaught of seemingly disparate and worsening symptoms. She went from being a varsity athlete with several national titles in women\\\\\\\'s rowing to a girl who had to take a nap if she walked around the block. The search for answers was a difficult and she was treated very poorly in this process. She was told that it was all in her head, that she had emotional problems, or that she would just have to get used to living with daily pain. I have had to help her fight all the way. We asked repeatedly for Lyme testing which was denied, so we paid for it ourselves. We received referrals to infectious disease specialist doctors in Canada who would not take on her case even with a positive Lyme test from a reputable lab. We have had to find a Lyme literate Dr. in New York state - the best decision we ever made - because she is finally on the road to recovery. I know that not all patients have someone to advocate for them and are not capable of fighting for their rights when they are so sick and vulnerable. I hope I can help.

Fort Erie, Ontario, CA

Heather Ramirez
About Heather

I have been infected since i was a baby. I am 31 years old, sick for 15 years, and misdiagnosed for 5 years. I have been told I\'m crazy, depressed, anxious, and a lot more, even being diagnosed, I still get treated poorly, because i do not \"look\" sick on the outside. I would like the world to be more educated on Lyme Disease, this is not a joke, we need a cure!!! We need to stop the ignorance!!

Trexlertown, PA, US

Holly Churchill-Lane
About Holly

I live in Maine in area repleat with deer and deer ticks. In 2014 I developed intense hip and knee pain, constant low grade fevers, and debilitating fatigue. I went to my Dr. he aked if I had a tick bit or a bulls-i rash? I told him no, but I do walk in area repleat with deer tracks. Got an ELISA test,came back neg. and was told I did not have Lyme. I asked for a western blot, that came back neg. as well. Then I started to have intermittent mussel weakness and neurological problems, lost reflexes in both legs. Went back to my family Dr. to let him I know I was getting worse, and begged him to give me antibiotics to see if me symptoms would improve, if it was in fact Lyme. He refused and told me to go to a Neuroligist, which would take 4 months. Then my son got a tick bit w/ the \\\"rash\\\" I took him to his Dr. who treated him right away. I told his Dr. my story, and he treated me as well. With in one week of being on Doxy. my symptoms had improved greatly. Since then I have tested pos.other L.D. blood tests(not just I-Gen.) still in treatment, and getting better.

Gorham, Maine, US

Deborah Kingsley
About Deborah

I am an RN infusion specialist that has been managing patients with Lyme Disease for the past 15 years as well as being a long term Lyme and Tick Born Disease sufferer myself. My journey began with clinical practice in treating Lyme patients and quickly became a focused area of specialty for me not only in the traditional medical sense with IV antibiotics but with integrative and naturopathic protocols. As my patient load increased I began seeking as much information as possible in order to be a patient advocate and assist my patients with information and options for gaining their lives back. As my awareness increased through researched self education I also became familiar with other medical professionals and practitioners who specialized in this area. In hindsight it was through my interest in assisting my patients to gain wellness that I came to understand the basis for my own disease and was able to seek out a diagnosis and many years of treatments for my illness. My goal is to heighten awareness by sharing my experience and knowledge in a way that will educate the public and bring assistance to those who are suffering the ravages of Tick Born Disease

Wanaque, NJ, US

Jacki McChessney
About Jacki

Hi have lyme and there is one PA in my area that know about lyme and she is not taking new patients. I talk to people about lyme all the time and here many sad stories of treatment refusals and general lack of knowledge on the physicians. I am in the process of starring a lyme awareness and support group at my local Health and Wellness association. I\\\'m looking for as much support and information I can to make this group successful I also want part of the mission statement to be to educate and inform the general public and physicians on the latest and most up to date information available. I want to provide the help and support that I couldn\\\'t find. Sincerely, Jacki McChessney

Williamsburg, PA, US