This was a message written by Andy's mother Betsy, posted in a closed American Facebook group, early in 2015. We contacted her to do an interview, to support other caring parents with children with Lyme. Like her Andy.
"My story starts much earlier than with Andy’s illness. My husband had Lyme and died of it in 2003. This was soon after he managed to still get his is Masters on 5/12/03. We never had any idea my husband was that sick. He worked full time as a Ph.D. & Acupuncturist and was in school full time getting his masters in public health.
He was being treated for asthma by his MD friends without seeing him. He would just get prescriptions over the phone. When he died, both my boss, my husband and the father of my children was gone. Our life as a family changed drastically. We were a solid two parent family with three children, two dogs, one cat and one bird. We prioritized each other and that morning my life turned upside down.
I don't know for sure how Andy got Lyme, but I suspect that a Lyme vaccine infected him. He and his dad were avid hunters, both avid outdoorsmen, Andy shot his first boar at the age of 7 or maybe even younger. Andy remembers his dad giving him "the Lyme vaccine" when he was around ten years old. I clearly remember my husband saying to him: "Buddy, now we are safe, we cannot get sick being out in the woods". Andy as an adult was covered in tattoos, so if he ever had a bull's eye, I am not sure we would have seen it. Our house is in the woods on one acre of land. He was never afraid of the woods nor did he ever feel lost. He just loved being outdoors.
Andy started complaining to me about his pain in 2013, so I asked him to get a Lyme blood test. He did and he tested positive. He was put on three weeks of doxycycline from our primary care. Then we were referred to a MD who had a reputation with treating patients with Lyme. But Andy lived alone and had a hard time following the doctor’s orders with all the different meds. He was in denial that he was sick. He got very sick with diarrhea and lost a lot of weight.
By this time he had become addicted to opiates, but he never told me. He was in so much pain and his meds did not do anything. He went to see a LLNP and she diagnosed him with neurological Lyme. She put him on malaria meds and ordered a CAT scan. Andy had had to go to a neurologist who did not believe in chronic Lyme. So afterwards my son got up from his the chair and said “See mom, there's no such thing as Lyme”. He stopped taking his antibiotics and seemed to get better at first.
On February 23, 2015 I saw Andy for the last time at noon. I brought him lunch and supplies to work on the roof, since we had tons of ice building up. Somehow he hurt his back. He died of either an overdose of heroin or it was laced with something. I do not know, because the results of his autopsy are not in. I do know that my son was looking forward to being a father and he had been clean for a while. I think he took the heroin to kill the pain and get back on the roof. His eight month pregnant girlfriend found him slumped over his laundry that he had been folding..
I would say to parents of Lyme sufferers to take your children seriously, even if they deny their illness themselves. Of course Andy did not want to have pain, just wanted to get on with his life. I would want them to realize that addiction can happen because of the daily pain and because of lack of care for this awful disease. When his meds did nothing to reduce the pain and Andy could no longer afford the cost of the street opiates, he turned to heroin.
I did not judge my son for it, because he was really sick. Sick with Lyme and sick with addiction. I loved him more than anyone will ever know. I will miss him until the day I die. I am glad he no longer is in physical pain, no longer struggles with anxiety and depression (also caused by Lyme), no longer struggles with addiction, and he is also with the person he loved the most: his dad.
About two weeks before he died we were driving in the car and he said he wished his dad could meet his son. I responded by saying that if his dad was alive, we would be in Arizona and that Andy would not be with his girlfriend. So then they would not be having a baby. “Your dad is dead”, I said. He then said "I can’t choose between my dad or my son. There is no good choice.”
He was so happy about the birth of his son. He cooked three meals a day for his girlfriend, and wanted to be a stay at home dad and grow marihuana, since he was a patient. He also told me the worst day of his life would be when his son started school because than he couldn't play all day with him.
Andy was kind, loving, funny and smart and could fix anything. He graduated from a trade school in heating and air conditioning with high honors and perfect attendance. He had over 500 people at his wake.
I am just okay now. I no longer wake up worried anymore. I wake up not feeling guilty that I am 58 and he was 25 and I felt better than he did.
Seeing his son Andy Jr. is bittersweet for me. But I do have a chance now to love my son again."