Dylan's IVIG Lyme Treatment

This is my son Dylan. He was born in August 2008. He was healthy and unusually bright, hitting every early childhood milestone weeks, or even months ahead of schedule. At a little over a year old, he could identify every letter in random order from flashcards, could to count to twenty-five in English and to ten in Malay, could identify every color in both languages, and the list goes on. At times, I felt a little guilty that things were going so well.

            We moved to a more wooded area in Loudon County, Virginia when Dylan was about eighteen months old. Ticks were everywhere, and it is one of the worst areas in the country for Lyme disease. Dylan was, and is, a magnet for anything that sucks blood. Any time I brought him to a park or trail through the woods, I inspected him for ticks immediately afterward, gave him a bath, and washed all his clothes.

At one point, while he was in the bathtub I found five deer ticks on his head. Our doctors told us not to worry, that ticks have to be attached for three or four days to transmit Lyme disease. When he developed a telltale bull’s eye rash, we were told that it was “just a spider bite,” and nothing to worry about. Early that fall, when Dylan started sleeping for around five hours a day, despite sleeping soundly through the night too, we were told that it was “nothing to worry about,” that he was “probably just having a growth spurt.”

In the months to follow, sometimes he would just stare at me blankly when I spoke to him, as though he no longer understood me. This is not a case of developmental delay. This is a case of regression.

At three and a half, he had not developed beyond where he was at two and a half. It was clear that something was wrong. The doctors again said that this was normal, that some children speak later.

We later moved to Massachusetts. People meeting him for the first time generally seemed to disbelieve that he had ever progressed as far as he had in the past.

We started bringing him to a speech therapist. She suggested that he “might be on the spectrum” for autism. A few months later, his decline accelerated. I watched my beautiful child get so sick that he literally did not know his own name anymore.

Every doctor that I spoke to treated me like a fool. They said that Lyme disease does not cause neurological problems in children, despite the fact that it does in adults. We had every conceivable test done to him. He does not have a sleep related issue. He does not have a chromosomal issue. His brain is the right size for his skull. His skull is the right size for his body. He does not have a food allergy or sensitivity.

Though they unfortunately did not commit this to writing, two doctors from the Pediatric Neurology department at Boston Children’s Hospital told us that his brain scans were “totally inconsistent with autism.” They said that he “definitely has an acquired condition.” They told us that would have not been able to tell from his medical records alone that there was anything wrong with him. They gave me blank stares, no answer, when I asked if his condition could be attributable to Lyme disease.

He developed circular red spots over his entire body, consistent with Lyme disease. I brought him to his pediatrician, who would not write the words Lyme disease in his records, but put him on Amoxicillin anyway. I told her that we would not be seeing her again, that we would be seeing a Lyme Literate doctor from then on. She did not argue.

We began seeing a doctor in Massachusetts who acknowledged that his condition could be a consequence of Lyme disease, but was uncomfortable taking on the treatment of so young a patient. She suggested that we see Dr. Jones in Connecticut.

Yes, that Dr. Jones, the one in the Lyme documentary Under Our Skin and Emergence, its follow-up. We were able to get an appointment in a surprisingly small amount of time.

Even Dr. Jones did not believe at first that Dylan has Lyme disease, because such severe neurological issues are generally accompanied by equal physical symptoms. We paid out-of-pocket for an IGenix Lyme test and accompanying blood culture. Both were positive.

After three days on a cocktail of oral antibiotics, we saw an enormous improvement in Dylan. We had not been able potty train him (he was almost five), but he potty trained himself that day, without any further incident. You could say it’s a coincidence, I suppose, but it’s hard for me to take that notion seriously.

Dr. Jones has wanted Dylan on IVIG treatments all along, but our insurance has not been willing to pay for this. He has had one two-day course of these treatments that we paid for out-of-pocket. This had a greater impact on him than anything else we have done, but again, our insurance will not cover it.

Dylan now has a broviach catheter in his chest for daily administering of Iv antibiotics, and he continues to improve, but still has a very long ways to go. We desperately want him to be able to do IVIG treatments too, as Dr. Jones recommends. As long as the catheter is in, he can be treated at home. The IVIG treatments would accelerate his recovery. Although he continues to improve, he is still far behind his peers.

As Lyme disease has reached truly epidemic proportions, I know that ours is not the only family desperate for funding for treatment. Any help at all would be appreciated beyond the scope of words to express.
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Organizer

Frederick Cheslek 
Organizer
Clinton, MA
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