Morris County, NJ
Infected:
 1991
Diagnosed: 2004
Current health: “Finally doing well again… thanks to the support of family and some great doctors.”

Seeking answers and advocating for ourselves and our families is important … Others will not do it for us. –Marjorie H.

Advocating for Lyme : A Mother’s Story
“When I was growing up, the extent of my doctor interactions was my annual checkup, which included the dreaded TB test circled with black sharpie.  As an adult, my kids and I were hit with symptom after symptom.  Despite living in one of the most Lyme-prevalent areas of the country, we were still unable to get answers as we went from specialist to specialist.  This was our new normal.

“Persistently seeking answers and advocating for our family was my life’s mission. As infants, my two children had a number of ailments that required multiple visits to our pediatrician and specialists.  Keeping up with infections, RSV, allergies, autoimmune disorders, hospital visits, OT, PT, ST, ENT, eye doctors, neurologists, cardiologists, and school was a full-time job. My own health issues were put on the back burner.

“My symptoms went up and down for 12 years and then spiraled steadily downward over the last two years before I was diagnosed.  Eventually, I was unable to use my arms, could only walk as far as my car in the driveway, had full body tremors, and experienced vision and hearing changes.  I was no longer able to care for our kids.   I had hope that the top neurologists and rheumatologists in the country would help me get to the bottom of what was occurring.  I went through dozens more labs tests, nerve tests, spinal taps, MRIs, and scans… only being told I had extreme inflammation and neuropathy.  The doctors prescribed strong narcotics and arthritis medication to treat the symptoms and pain – not the cause.

“I continued to educate myself and reached to support groups and family friends. Eventually, I was pointed in the direction of my current doctor.  She spent two hours reviewing my history, ran appropriate tests and spec scans.  My labs all came back positive for Lyme, multiple co-infections, and severe brain inflammation.  I was finally put on a treatment plan that saved my life.

“At the same time, my son was hospitalized for nerve palsies in his eyes, and a few weeks later our daughter was having seizures in the middle of the night.  After testing both kids appropriately, we knew we needed to find a doctor willing to treat them for Lyme as well.  After waiting three months, we were able to see a fantastic doctor, who has treated hundreds of children with late-stage Lyme.  He worked steadily with them over several years.

“Seeking answers and advocating for ourselves and our families is important, and, as a parent, we need to do this in certain situations. Others will not do it for us. Our family was blessed to have my parents and extended family help care for our children and get us on the right track – my cousins were even kind enough to move in for a while to aid in our recovery.  We couldn’t have done it without them and our excellent doctors.

“We are all doing well despite having learned far too much about lab tests, disease strains, and everything else that confronts late-stage Lyme disease patients.  If more doctors, and the medical community in general, had been fully aware of proper testing, symptoms, and strains, we may never have been forced to endure the path we have traveled.  Early treatment is always key.”

3 Comments on “Marjorie H.

  1. I’m so sorry that your family went through this horrific disease and continue to suffer. I am in NJ, in a ground zero area, and not one of many doctors caught it so like most of us, we are in late stage Lyme disease. I live outside of Atlantic City and can’t find anyone to treat me. I would have to travel several hours roundtrip to get a doctor yet have no means to do it. These doctors have seen greed over treatment, demanding up to a grand just to be seen. No insurance. This has to change.

    As for me, I am declining. I can feel it over the summer. I rarely left my home. I’m so lost. My worst symptom is severe burning pain all over. Can you imagine walking around feeling as if you have severe burns all over? I can only pray for those after me that there will not only be a cure, but also, we need the military to get involved and find a way to kill these ticks, etc…..boots on the ground. It will never change until we address this epidemic on many different levels.

Leave a Comment

Your email address will not be published. Required fields are marked *