Twenty Twenty: Lyme, PANS and a New Decade

It's upon us. 2020. A decade that can finally again be referred to with an "ies" at the end: twenties, thirties, seventies.... Perfect vision. As if anything can be perfect. One hundred years since the hard-fought-for women's vote. A decade that could all too easily repeat that from 100 years ago in terms of anti-Semitism and government control. A new decade in the life of my children.

A new year and a new decade of medical advances--hopefully.

What do we leave behind? Ten years of treating. Ten years of memories.

Ten years ago was our start with PANS/PANDAS.

A collection of information and research has been accumulated over these past ten years when a decade ago, there was barely anything, especially on the internet. There were hardly any doctors treating. Schools knew nothing. Saving Sammy hadn't yet been written; My Kid is Not Crazy hadn't yet been filmed.

There still aren't enough doctors treating PANS, PANDAS or Lyme. There still aren't enough mental health counselors or educational institutions who understand and support our families.

What do we have to look forward to? There has been a spike of Lyme diagnoses and illnesses and these will probably continue to increase.

Maybe this will lead to additional research and a cure.

But, I am not holding my breath.

We are in the decade of too much social media (but please, don't stop reading), toxicities in the soil, overly vaccinated children, smart meters, cell phones (mine's more faithfully by my side than is our family dog). We are in the decade of increased cases of anxiety, attention issues, depression in our nation's children. We are in the decade of vaccination mandates, of a loss of medical exemptions, of a usurpation of religious rights.

We need a break already.

We need to leave the confines of our houses, our dis-eases, our toxicities, and bathe our feet in (well, semi-toxic) soil and (polluted) oceans and beaches. We need to walk or run or cycle or horseback ride until we feel that we are flying, soaring above it all. And we need to contemplate--what is life all about anyway? Why is there so much suffering? Why was life so much easier in yesterday's yesterday? And how do we get back there?

My advice--and I'm not a doctor--is to treat all infections as aggressively as you possibly can while your child is still young. Treat before the child refuses to treat. Keep checking for triggers. Got PANDAS? Kid depressed? Look for strep in the entire family, again. And again. And again. Do it now. Don't hesitate. 

My advice--find a doctor who can do it all, but no matter how wonderful that doctor is, second guess them. Our PANDAS doctor didn't know enough about Bartonella at one time and then our carefully chosen Lyme doctor never tested the family for strep. Which had returned, much to our dismay. The most fantastic doctors are still learning. We parents have a key role to play in this. 

My advice--connect with other parents in our community, because the outside world, including extended family, usually gets tired of the same old story and wonders why your child isn't yet better. They will blame you if you're not one of the fortunate ones with excellent, supportive kin.

My advice--find those people who have gotten their kids into remission and find out what they did.

My advice--What works for one child might not work for another. Always keep this in mind. And be flexible.

My advice--get out of yourself and help someone else. It brings meaning to your trauma. It helps you forget, for a moment, your own story. Or it helps you to reframe it. 

My advice--don't talk to extended family about your child if they show judgment, if they criticize, if they reflect disbelief. You won't persuade them, no matter how many PubMed studies you try to send them. Spare yourself.

My advice--PTSD is real, our PTSD as well as that of our children. Take steps to deal with it and don't let anyone tell you that you can't possibly feel that way. 

My advice--when you finally get a moment to breathe, start taking care of you, yourself. Treat your own symptoms, if you have Lyme. Go out once in a while. Socialize even if all you can talk about is PANS. Make yourself not talk about PANS or Lyme for an entire night. Read a book that has a happy ending. Listen to music. See a therapist. Work on your marriage if you have one. Exercise. Optimize your own mental health through friendships, meditation, runs in the park, yoga, bicycling, singing, dancing, playing pro football--whatever it takes. 

This is the decade of re-discovering ourselves, reflecting on the activities and friendships that bring us happiness and choosing to bring more into our lives. Pushing through when we don't feel well. Resting without guilt when we cannot push through. Connecting any way we can with others and reaching out to guide others when we can. Hibernating without guilt when we cannot. Then rising again, hopefully stronger, like a phoenix.

Twenty-twenty. 2020. We've got this. A new chapter. A new book. May this year steep you in sweetness and love, acceptance and education. May this new year bring healing.