Although my destination was the University of New Haven in West Haven, CT, my GPS told me to get off in Milford. I wasn't paying attention, so I obeyed. Which resulted in me hitting every red light along the Boston Post Road. Oh, no--I was going to be late!
I should've looked up the directions to UNH instead of blindly listening to dear Edna (GPS). Similarly, I need to learn more about Lyme Disease instead of just trusting our doctors. Don't get me wrong--we are finally working with the most fantastic doctors in the world. But I know my son better than anyone else and his health is my reponsibility. I need to be able to question, to help drive the treatment plan. And to do that, I need to learn.
I pulled into the parking lot a few minutes late, ran in, signed my name, received a bag of information and took a seat just as the presentations began. Phew!
Turns out that three of the medical professionals with whom we've consulted were there today. I knew that Dr. Charles Ray Jones was speaking. Ms. Sandy Berenbaum, LCSW, BCD and Dr. Judy Leventhal were also there.
I didn't stay for the entire time and so I did not get to hear Dr. Alan MacDonald speak, unfortunately. Dr. Eva Sapi was speaking when I began receiving texts from my twelve-year old son who claimed to need me "more than ever." My husband was home, I was hours away, and it turns out that my boy was stung by wasps (but he didn't tell his dad...?) But I did get to listen to most of her talk and I heard one of the graduate students speak. As well as Dr. Jones and Dr. Joseph Burrascano.
So, here are the notes about Dr. Jones that I managed to jot down. Any errors are mine and I apologize if I erroneously attribute ideas that were not stated as having been announced by these scientists. In the next couple of days, I'll add a second column with the remainder of my notes.
Dr. Jones is about 84 years old. He sports longish hair, a track suit and shoes and a cane. He is a kind, brilliant man. He is also under investigation because he doesn't practice by CDC guidelines, which still don't support chronic Lyme Disease. The investigation and the fines he has been forced to pay would have knocked another doctor out of the business. Instead, Dr. Jones works six days a week in an attempt to help the children of our world. I'm a fan.
According to Dr. Jones, tick saliva is transmitted as soon as a tick attaches to a person's body. A low level of Lyme Disease is in the saliva. It is a fallacy that it takes 48 to 72 hours for Lyme to be transmitted. Dr. Jones spoke about a three year old girl who became infected in 25 minutes. He was able to save her after her own pediatricians dismissed the bull's-eye that encompassed her entire body.
According to Dr. Jones, who has treated over 10,000 patients from around the world, less than 50% of patients report ever seeing a tick. "It's not the ones you see," Dr. Jones said, "but the ones you don't see." He added that it's a "rare treat" when there's a bull's eye rash.
We never saw a rash on my son. We never saw a tick. We have no idea how and when he got Lyme Disease.
Then again, he could've gotten it from me if I was carrying it. Lyme can be transmitted to babies in utero or through breast milk, Dr. Jones says. Lyme is carried from place to place by field mice, birds that carry and drop ticks and by mosquitos. Air travelers can accidently pack ticks in suitcases and bring them to other states and countries. Yes, there IS Lyme in Georgia. The image of a friend of mine and her daughter flashed onto the screen. Yes, they're from Georgia. My son is friends with her daughter and in fact, they will see each other again during their next IVIG session.
Dr. Jones said that he'd left NYC for the country many years ago, to raise his family and practice as a "regular pediatrican." Suddenly, children in clusters were coming to his office complaining of symptoms that sounded like juvenile arthritis. Some of the children had strep and when treated with antibiotics, improved in terms of the joint pain as well. This showed that there was something bacterial going on.
At the time, Lyme Disease was treated with a few weeks of antibiotics. Some people healed and others had relapses as soon as the antibiotics were out of their systems. A ten-year old boy who kept relapsing asked Dr. Jones if he could just remain on the antibiotics until he was totally cured and Dr. Jones concurred. Thus was born Dr. Jones' treatment of long-term antibiotics. The boy was on antibiotics for five years. Today, the boy has grown into a man who is Lyme-free. Dr. Jones said that the child has to feel that he is Lyme-free; that's the critical point.
He also added that pulsing, or giving antibiotics for a couple of weeks and then pulling back on them before adding them back in, doesn't work with children as it does with adults. It results in a lot of herxing and doesn't help, he discovered.
Dr. Jones added that Lyme can cause autoimmune diseases. PANS/PITANDS/PANDAS symptoms can include obsessive compulsive movements, a withdrawn personality, oppositional defiant behaviors, aggression, a decline in hand-writing skills and vocal tics.
He stressed that one needs a clinical diagnosis for Lyme Disease. You can have a positive result with Igenex but if the clinical symptoms aren't there, Lyme isn't present. Bands 31 and 34 indicate an autoimmune reaction triggered by Lyme. PANS can be triggered by all co-infections (babesia, bartonella, erlichia, etc.)
Then he talked about how IVIG affects the B cells (and he lost me. I will have to read up on B cells.) He talked about the central nervous system being affected. He talked about sensitivity to sound and light, as well as voluntary and involuntary motor systems being affected.
Double vision can occur, as can convergence insufficiency (my son suffers from this.) This can be corrected through prism eyeglasses, vision therapy and antibiotics. Processing speed can decline, but can be reversed when the child is healed.
Fatigue is a hallmark of Lyme. (Note to self: fatigue is also a hallmark of parenthood.)
Dr. Jones said that some children have full-blown psychosis. They will often respond to IVIG. Psychotropic medications, as many of us know, are ineffective for PANS.
What struck me was when Dr. Jones talked about the NIH study of IVIG for PANDAS/PANS. The doctor we see for my son uses high-dose IVIG. And we are seeing results. High dose IVIG involves 1.5 - 2.0 mg of plasma per kilogram of body weight. The NIH study did not use this level of plasma, was not successful, and then concluded that IVIG is not helping children who have PANDAS. Breathe. They did not give enough immunoglobin for it to be effective.
Some children will not test positive to Lyme Disease at all. If a culture is tested through Advanced Labs, Lyme Disease can be detected. CDC criteria excludes bands 31 and 37 but these bands prove definitive exposure to the Lyme bacterium. There are 8 relevant Lyme bands, but most commercial labs don't test these. These Lyme bands are: 18, 23, 30, 31, 34, 39, 83, 93.
HLA antigens are associated with an autoimmune reaction.
Dr. Jones ended with a story about a boy who was mistakenly diagnosed with autism. Dr. Jones tells this much more eloquently--and I have to admit that I teared up when he told us the tale. He said to this little boy, "I hope I have the key that can unlock your brain."
Dr. Jones healed the boy, who came back and thanked him for finding the key that unlocked his brain.
May we all find the keys for our children.
Future blog/report: Dr. Burrascano and Dr. Sapi.