I woke to this email and have permission to share it with you. I removed some personal info so to not violate his privacy. I get emails like this ALL THE TIME from people that I have no direct contact with. They find me through a coworker, neighbor, friend or family member who reads my weekly column.

This is my “Why” ~ to make a difference in the lives of people in Maine touched by tick-borne disease, to change the trajectory of their paths from chronically ill and debilitated to one of better health and wellness.

This man, Scott, has never met me but someone told him about me and my column. He learned of my story. He reached out to the doctor who saved my life. He's now getting the proper help he needs. What if this was your husband, brother, cousin, father? How far would you go to get them the help they needed if you knew they were being treated like this?

I want to draw your attention to what he went through at beginning. This is all too common and what I fight against on a daily basis. Doctors who know very little about diagnosing and treating tick-borne disease are putting their patients at risk and causing needless suffering. They are contributing to the rise of chronic disease.

Every time I talk about the doctor who saved my life I cry ~ I don't take any of this for granted, I know how sick I was, I know where my path was leading and it was not going to have a good ending. I thank God for her knowledge and experience that saved my life.

Each day, I pay it forward by doing whatever I can to make a difference in the lives of others like Scott. Please read:

Dear Paula,

My name is Scott and I live in Maine. I am 55 years old and I have five children. Three of whom are grown up and moved out. Two I am still raising.

Recently right around the first of August, I was getting some strange feelings on the surface of my head as if my head became sensitized to the touch. It was very odd. When my neck started to become very stiff, I became concerned. I shrugged it off as maybe I was coming down with a virus of some sort. But as time went on, I began to get sicker and very weak. Then, my arms started aching really bad, so bad that it was keeping me up at night and not able to sleep. I literally was finding it difficult to even get comfortable laying down. It settled into my shoulder blades and upper arm muscles and shoulder joints. My upper arms were badly inflamed and rock hard. Finally, I said “it’s time to go get this checked.”

On Friday August 9, I went to go see a family doctor. The doctor suspected one of two conditions that mirrored my symptom, spinal meningitis or Lyme, and he chose to treat me for spinal meningitis first. I was sent to the ER for a blood test and chest x-ray and six hours later, I was no closer to finding out what was making me so sick. Growing more impatient and sicker with every passing hour, I walked out of the ER frustrated because no one even spoke to me about any of the test done throughout the evening there.

Monday rolled around and I wanted to know what my results of the blood work was. Thinking they must know something by now, I called my doctor’s office. They told me that they got something from the hospital but that the doctor hasn’t read it yet. My reaction was, “well maybe it takes a little longer.”

Meanwhile, a few days go by, I’m still not getting better, I’ve called my doctor’s office later (the same week) and now they are saying they haven’t received anything from the hospital. By this time, I am becoming more stressed and frustrated and sicker. I waited a few more days to see if I would get a call but to no avail. So I call and I am told they have not received anything from the hospital. At this point, I’m doing my best to compose myself and sort of try to give them the benefit of the doubt. This was it! I demanded some answers, stating they need to find out today what the blood test was. Well, they finally called me back (or I called them don’t recall) and the office said to me “Your blood work and X-ray of your chest was negative for spinal meningitis symptoms.” I thought, ‘OK great! I don’t have that but what do I have? The doctor asked to come in that same day to get blood drawn in their lab across from their office. He also started me on Doxycycline before I even got any results from the second blood work drawn. To his credit, I applaud him, but it was unfortunately not a long enough treatment. I was also put on Erythromycin and Mepron when my blood work came back positive for Lyme and Babesiosis three days after the second round of bloodwork was done. I was only kept on the antibiotics for fourteen days and yet, I was still having pain in my shoulder area, upper arms, breathing was becoming difficult and I was getting dizzy easily bending down.

At this point, I had missed a total of nineteen days at work. Luckily, I had much time earned. As I was finishing up my treatment, I felt a little better and felt I could go back to work half days. That lasted for two weeks. I continued to see my health care provider and I was being told, “You’re doing better” even though symptoms lingered and I was struggling to return to full days of work.

A co-worker told me about you and your experience and how you write this column in the Lincoln County Newspaper about Lyme. I was very much interested. I have been reading your articles ever since. I watched your channel 6 news interview and was so overwhelmed, not by just by what I was going through but listening to your story. I was so moved. Because it’s true what you write. People really don’t listen to what you’re saying.

I took the initiative and sought out medical treatment from the very same doctor that helped you. I wasn’t able to see her (because she is booked up til January) but I am seeing another lyme literate provider in her practice whom I put my complete trust in.

It’s been a battle with the insurance company trying to get prescription coverage and I pay for insurance through my work. They refuse to pay for hardly any of one of the prescriptions I was being put on and so my Lyme provider found another antibiotic along with herbal supplements to get me back to hopefully feeling myself once again. I am currently seven days into my second round of integrative treatment, consisting of antibiotics and herbal supports Hopefully, I will get better and these symptoms will go away.

I really would like to meet you someday, share more of my story and learn more of yours. I’m hoping that I can attend one of your conferences.

Keep writing those articles and doing the good you do for all those afflicted with these terrible tick-borne diseases. Maybe someday more people will listen.

Take care and thank you for reading this email, I know it was long, but I appreciate all that you do!

Sincerely,

Scott

If you or someone that you know is struggling with tick-borne disease, please contact me. This is why I do what I do ~ to change the trajectory of the broken paths so many people find themselves on.

Paula is the president of the MLDSE, former co-chair of the Access to Care Services and Patient Support subcommittee of the Federal HHS Tick-borne Disease Working Group, the Maine-partner of the national Lyme Disease Association, member of Maine’s CDC Vector-borne Workgroup and active in Maine’s Lyme legislation. You can reach her at paula@mldse.org or visit www.mldse.org