I want to wear blue wings and soar

above the screaming

tantrums of today

I will take you with me

(hold you)

as we gaze down

upon whispery earth

at tiny beings

scuffling about

checking their clocks

and bank accounts


the life of a bird

who does not love so much

that it hurts







Top New Year's Resolutions for a Lyme - PANS - PANDAS Parent

Top New Years resolutions of a strung out PANDAS parent, constructed by a few harried moms. And, in no particular order, here they go. Can you add something witty to the list?

  • To write sad country music about holding back tears or alternatively, hard rock about OCD
  • To breathe. Ohmmm..... breathe out fear and breathe in less chocolate
  • To clean out my child's compulsively messy room and actually throw it all away unless I see something I want for myself, that is
  • To get my kids’ medical binders organized
  • To be able to identify each medication by its size, shape, or color, and not by the label on the bottle
  • To compile a list of civil come-backs for those who criticize what they perceive to be my not ultra-amazing parenting skills
  • To not over-share with people who do not care
  • To corral the drama-llamas and stay far, far away, in another galaxy….
  • To not wait till 9:00 on a Saturday night to dole out medicines for the week...
  • To stalk every support group and doctor website for the next greatest supplement that could save my kid’s life
  • To read every PUBMED article ever published about autoimmune encephalitis
  • To be able to pronounce methylenetetrahydrofolate reductase. And say it 5 times fast (just kidding, even saying it once counts!)
  • To carry on an entire conversation using acronyms: PANDAS, PANS, MTHFR, CBS, COMT, MAO, VDR, HLA....
  • To finally understand methylation and the mother-father-shut-the-door gene
  • To be able to decipher a 23andMe and comprehend snips (SNPs)
  • To memorize the Lyme-specific bands on a Western blot. No, wait, I did that already!
  • To play Cards against Humanity: the PANDAS pack
  • To watch every Dwayne Johnson movie, because they have absolutely nothing to do with PANS or Lyme. And because Dwayne Johnson. Or to alternatively, watch every Avengers film because of Thor, who can save the world with his muscles and his hammer. The old movies, where his hair is long….
  • To play more board games as a family, so that we can create some pleasant memories. Once I bribe them all to sit there
  • To make gluten- and dairy-free more enticing, especially because I detest cooking
  • To get off all sugar--yeah, right!
  • To develop a non-toxic, Teflon-like skin, so that criticisms, complaints, and even well-meaning-yet-unhelpful comments roll off of me like water from a duck’s back
  • To win the lottery to pay off all of those medical bills
  • To go a whole day without mentioning Lyme or PANDAS! 

Adversity, Illness, Family & Hope

I recently held separate parent teacher conferences with divorced parents of a child in my class. One of the parents expressed anguish over the drama that had played out in the last few years, saying that the daughter even had her own lawyer for part of the time. 

This ignited my own memories, although I didn't share them. My parents had an acrimonious divorce. My mother blamed me for her "financial loss" as she saw it because I was 18 and contrary to my people-pleasing personality, would not go to court on her behalf. Bitter years followed, which took much work for me to overcome. 

Overcome them I did. I figured that I had paid back the universe. I had dealt with more than my portion of despicable behaviors and anguish. Friends had not known such difficult times; I saw that first-hand when I was invited into their warm, calm homes and treated ever so kindly. Hence, when, years later, my son first became sick, I wondered, as many of us parents do--why me? Haven't I endured enough? Haven't I already paid my dues?

This child in my class has suffered, yet to know her, to see her from the outside, one would never know. She's sweet, mellow, has kind friends, tries her best in school. She's likeable and well-liked. Her parents both deeply care for her although they continue to dislike each other. Why her?

But then again, I thought, why not her? Perhaps she will be stronger for all this than the adult she would have grown into someday. Perhaps she will be stronger than the classmates orbiting about her. Perhaps despite the angst and anxiety, or because of it, she has developed courage and fortitude that will protect her for the rest of her life. If so, what happens to the kids who do not learn how to climb above adversity? What happens to those kids with "perfect lives?" Will they fall apart when as adults, they must suddenly deal with job loss, a sick spouse, a child with Lyme?

Following this thought, maybe I needed to be kicked out of the house for no reason, as were my brother and sister. Perhaps I needed to be blamed for my mother's financial ills and be subjected to helping her lest she drive herself off a bridge. Maybe I needed to finally say NO to my own mother. Maybe I needed to be open to letting in people who were not blood-family. Maybe I needed to stop cringing when people went out of their way to do something kind for me. Maybe I needed to accept into my life a most lovely woman who called me her G-ddaughter because she said that G-d put me in her life. Maybe, in order to deal with the adversity that was yet to come, I needed to see that I could survive because I was strong enough with the help of people who were once strangers.

I took a self-directed trip to Italy once, alone, when I was younger and single. Each day, I met people from all over the world with whom I bonded for an hour or a day or more and I had an overwhelming sense that something was looking out for me. I went by myself and returned feeling that I was not alone. 

As parents of children who are sick, as parents who are sometimes ill ourselves, we question--why us? Why our babies? My son was healthy and happy before be became ill. Will he emerge from this with strength or with scars? My daughter, the healthier sibling, knows so much more than I ever did at her age, and not just because of the internet. Has she been affected? Yes. Her petals have been injured, but she continues to bloom.

Many of us parents of sick children have met through support groups, but the threads that keep us connected are not the shared feelings of being victims but of the determination to navigate this fight. We are drawn together from a sense of power and purpose. We struggle to make our families blossom despite the concrete weighting us down. We reach toward other parents through the cracks of the internet as we would toward the sun. 

Paul Tough is the author of How Children Succeed: Grit, Curiosity, and the Hidden Power of Character. According to Tough, "People who have an easy time of things, who get eight hundreds on their SATs, I worry that those people get feedback that everything they’re doing is great. And I think as a result, we are actually setting them up for long-term failure. When that person suddenly has to face up to a difficult moment, then I think they’re screwed, to be honest. I don’t think they’ve grown the capacities to be able to handle that."

Additionally, in an interview with Dallas News, Tough states, "There’s lots of evidence out there that growing up in a childhood that has too much adversity, too much stress, too much trauma is terrible for kids. It doesn’t make them stronger and more resilient. It harms them in all sorts of psychological, emotional and physical ways. But at the same time there’s also evidence that too little adversity can be harmful as well."

What significance does this have for our children who suffer from Lyme, PANS, PANDAS, other chronic or poorly-treated diseases? How does this help to calm our worries about the siblings who are also losing chunks of childhood due to family medical issues? 

The child in my classroom who has dealt with divorce will hopefully never have to deal with such adversity again. But if she does, she has already learned that she is not alone. Her teacher is just one person who is there for her. Our kids at home who endure years of treatments for chronic illnesses...some are already pursuing their dreams. For others, just holding on one more day to fight this illness shows perseverance. When that strength is finally used for something other than survival, whether it be for mere pleasure which has often been forsaken, or for a meaning in life, that child will soar.

As a parent, I can truly say that today, I survive because I am strong enough to accept the help and love of people who were once strangers. I am not formidable, but I have power. I may not be able to save my son, but I will not quit until he is better. Perhaps the difficult times I was forced to manage as a teen and young adult prepared me for this concrete path today. 




Answers to "How Is Your Child?" #Lyme #PANS #PANDAS

You slide into the supermarket, push the cart through as you search for organic vegetables (or not, because you haven’t money left for organic), when an acquaintance stops you and asks how everything is. You smile, skate by the question by saying fine, but they persist and ask, how is your child?

You go to a family BBQ and someone asks, in the midst of company, about your child. How do you respond when your child is not well?

PANSLife surveyed a bunch of parents of kids with PANS AND Lyme and came up with the following answers. How many of these resonate with you? How many of you are able to be truthful? To not shield yourself and your family from the world? And to venture receiving either compassion…or criticism?

Sometimes, families are the worst culprits when it comes to belittling parents’ attempts of solving the problem of PANDAS. Or PANS or Lyme. Sometimes, acquaintances and colleagues would rather not know. Yet occasionally, our sharing can lead to another child being correctly diagnosed and treated before the infections cause irreparable damage.

Here are your words:

 “He’s had a rough year fighting…”

 “They don’t ask.”

 “She’s struggling right now. Keep us in your prayers.”

 “He is struggling, better than he was a few years ago, but has no life outside of the house. Thank you for asking since everyone seems to have forgotten about him.”

“We do not talk with distant family. I have posted articles about PANS online for general reference. My teenager is triggered by me oversharing. We talk about it with close friends. Otherwise, we just make small talk.”

“Most don’t ask. When they do, it’s such a vague question and I don’t know how to answer it. I don’t think they are prepared for the reality.”

“I cannot go into details with most unless I know they have a background knowledge to understand. You can’t just say he hit a teacher, then smashed his head into a wall…it’s unfathomable to most. And many people would judge you and your child harshly.”

“When she was spiraling in PANDAS in the past, everyone went silent. No one asked about her or our family. I still don’t think some family members every acknowledged her diagnosis.”

“My mother-in-law is an MD. She told us PANDAS was not real.”

(PANSLIFE note: PANDAS/PANS is recognized by the National Institute of Mental Health, by the American Pediatric Association and has been written about extensively in the Journal of Child and Adolescent Psychopharmacology.) 

“It’s a long story.”

“I used to share more, but people don’t understand; how could they? I can’t believe how hard it is, and I live it every day. Too much information can bring unwanted attention from do-gooders who report your family to children’s protective services or advise us what we are doing wrong and how we should get help. As if we haven’t exhausted every resource we can find.”

“We have a reunion coming up and my family didn’t go last year. This year, I don’t want to go either because no one gets it!!! My husband will stay home with my child. I will get questions like where she is, isn’t she don’t better? I try to explain what’s going on but I just get confused looks. My sisters just ask how she is; I just say better and they accept that and walk away. The whole situation is sad. I have no idea what to say to my aunts this year. Sometimes I wish no one asked, then I get upset when no one asked!? Vicious cycle!!!!”

“I say ‘fine’.”

“’I can share some literature with you that explains his medical issues if you are up to reading it, but if not, it’s too complicated.’ Sad thing is no one except one jewel of a family member has even showed interest in reading or understanding anything.”

 "I call it Autoimmune Encephalitis now because PANDAS sounds too cutesy. AE gets more respect."

“We have our good days and our bad days.”

“Distant family doesn’t ask, close family doesn’t understand, so they get a general “OK” response. Only few understand and care to really hear the true answer.”

“In the past, my sister was honest in communicating her thoughts about my lack of parenting skills. However, she gets it now and is one of my greatest long distance supporters. She calls just about every day and lets me tell her what is really going on. I am so thankful for her.”

“We are still working on his health and learning about his immune system. He is not where we would like him to be, but we are continuing to move forward.”

“I say up and down. We’re hanging in there.”

“I tell them he’s struggling, but we’ll get through it. I’m really honest about everything.”

“I’m honest but don’t do a lot of details.”

 "Not everyone believes in chronic Lyme. Not everyone believes that chronic Lyme or Bartonella can cause this much destruction in a small person. I've gotten pretty good at reading facial expressions of disbelief and I've learned when to stop talking."

“Not well at the moment. He is struggling. We are hanging on with hope but thanks for asking.” Then—move to another topic. I don’t over-share. I’ve learned not to after all this time.”

“I say, ‘up and down, as always.”

“She’s doing ok.”

“We say it ebbs and flows and that we just keep going….”

“I answer honestly, depending on how she is at the time.”

“I say fine. But no one really wants to know, unfortunately. In fact, I think they specifically don’t ask about him for that very reason. If I do open up, I often get advice that just makes me angry. But that’s just me.”

“Depends on how they ask. If it’s just small talk, I say ‘fine’ and redirect the conversation. If they want more, they will press on for it. They usually just follow up with ‘Is she still…’ and that’s the cue to go into more detail.”

“One day at a time. I’ve also just recently decided that if someone tries to give me their ‘advice’, I’m going to whip out my phone and read excerpts from this [closed support] group and then ask, ‘What would you do?’”

“People asked how school went this year. My response was, ‘Well, it’s the first year he didn’t get suspended, so better.’”

“My answer depends on the person. If it’s someone that I know cares, I’ll spill the beans. If it's a family member that cares but gets too involved, I halfway spill. If it’s someone making small talk, I say, ‘He’s hanging in there.’”

“I was having a conversation with a friend the other day and said, ‘It’s been a rough road recently.’ At the end of the call, he said, ‘Post an update on Facebook.’ He doesn’t even realize that I left Facebook. I am not posting updates anymore! If you care and want to know, you can call! I don’t have time to look at all the happy posts.”

“It’s complicated but overall, things are going OK.”

“I have always been very honest and factual. I try to educate as to what we are dealing with at the moment. Awareness goes a long way. If they don’t want to know, they won’t ask or will stop asking.”

“I also answer honestly, depending upon how she is at the time they ask. My family makes suggestions but it doesn’t anger me. It comes from love and wanting to help. And they want to understand. I am blessed.”

“I like to think of it as where he was on the road to recovery in terms of percentage. Like 50% better, then 65% and so on. I think that is meaningful to people, so they can understand where your child is in the healing process, and shows there is progress. I also rated each day 0-4 and recorded that so I could see looking back how severe his symptoms were and look for any pattern. 4 was for severe symptoms, and 0 was none, but of course he never got a rating of 0 while healing. I remember towards the end, he was getting many 1's. If someone was interested enough I shared this rating system with them. I think speaking of "symptoms" helps distinguish what is the illness and what is your child.”

“Terrible. Thanks for asking.”

“Great question.”

“He’s coming along. Hoping to see the day that I can say, ‘He’s great!’”

“She goes up and down and she’s down right now but we’re hoping that changes soon.”

"He's being so brave! This is such a challenge for him. We celebrated _____ this week but he really had a tough time with ___"

“I've stopped being truthful. They don't understand and don't truly want to know. I instead say "she struggles with some health issues, but we'll get there" and then I change the subject to something I know they want to talk about - their own kids, themselves, or anything other than my own family.”

“I usually said "this is a good week" or "this is a rough week" and follow up with a sentence that includes the word PANDAS. I find that people are really interested. Ironically, it's actually our immediate family who seems not to get it or be interested in how/why/what we are doing. So it's nice to teach someone about it who seems interested.”

“Better, but he still has a long way to go.”

“Most people really just want to hear a happy ending. There is little understanding for “chronic” or relapsing.”


PANS/PANDAS takes its toll on the entire family: parents, siblings, extended family member who choose to care. Sometimes when we try to share, all we hear are crickets. Occasionally, a confidante will actually take the time to listen. And rarely, someone will even admire the persistence of parents who refuse to give up on their beloved children. It sure beats criticism, either direct or implied, or a move to distance oneself from the stricken family.

Facebook has its place in the lives of the struggling. Closed, private support groups offer a refuge for parents fighting daily for the lives of their children. It is often here, with strangers, some of whom become best friends either over the internet or in real-life as well, that parents feel the freedom to confide the most horrific side of PANS. It is here that parents can receive the support and unconditional love so desperately needed through this ordeal.





A better GPS to managing your child's disease

There I was, barreling down the highway in my car, sweatshirt hood up over my head, covering much of the left side of my face so that I could barely see out of my left eye, traveling away from my destination. I drove in the right lane, searching for an exit that wouldn't come, speeding along just to try to meet the flow of traffic, yet being passed all the same.

I needed to get off the highway. I was heading in the wrong direction. To make it worse, there was a bridge coming up, leading to another state altogether. My chest tightened in panic; I had to turn around somehow. I pulled into another lane in what appeared to be an exit, but it fooled me and just brought me back onto the highway again.

Some man came running down the middle of the busy road, dark clothes, thin, racing down the line that separated the lanes. He was aiming for my car door. But because of the hood obscuring my vision, I didn't see him until the last moment, when I sped past. At that point, I heard police sirens and noticed the open back doors to a police transport van in the middle lane, to my left. I drove past it, frightened because he was clearly an escaped prisoner. Had I been able to see him better, I might have noticed the gun in his hand aiming at me, demanding that I stop for him, and I might have been terrified into slowing down. 

For all of five seconds, the feeling came over me that G-d watched out for me, despite the fact that I no longer believed in G-d. 

I saw the icy blueness of the river looming in the distance, the heavy metal scaffolds of the bridge, and knew then that there was no way to get off this road before I traveled even further from my home.

I made myself wake up.

Only to realize that I'm still spinning down this highway of life, that I'm not where I'm supposed to be. Only to realize that I cannot escape the furious pace of life with a child who's ill, whom I do not have the wherewithal to save single-handedly.

There are no exits in my life. There are no alternatives. I must follow this path as it leads further away from anything I ever imagined, must follow this path that leads me into vertigo from spinning out of control. 

I cannot make sense of a kid suffering. My child says that he lost much of his childhood; my husband and I also grieve. The money that we used for medical bills would have paid for trips to other countries, Broadway shows, activities, lessons and dinners out. The hours, days, years we incurred traveling from doctor appointment to doctor appointment could have been delightfully whittled away with bicycle rides, ice cream parties, family trips to museums and movies.

I cannot make sense of a disease that has not got a cure. A disease that is disregarded by doctors, disrespected by the very medical community that misdiagnosed my child, misunderstood by the general population. 

We have been deprived of some of the best years with our children as children. We know all too well what we have lost--the joyous laughter of two little kids playing together, pretending to be mommy and daddy to the monkey dolls we bought for them at the zoo, the kids zipping by us on their tricycles, then learning to ride bicycles without training wheels, the squeals and giggles as we shoot whipped cream from the can into little open mouths.

How do we get this back? How do we save our children--and by that, I mean all of our children, our collective children who suffer from misunderstood diseases, who are left on the sidelines--or no lines at all while others participate, achieve, advance through life? How do we ensure that they even make it to adulthood? How do we help them to have decent adult lives?

There are no exits for my child, for my family. I do not know why. I do not see a greater meaning to anyone suffering.  

We need to turn our lives around. Somehow. For that, I need a better GPS.


Lyme Connection Conference 2017: Notes


I had the opportunity to attend (and run a Lyme Disease Challenge table) at the 2017 Lyme Connection Health Fair and Conference (Beyond Lyme: Redefining the Future of Tickborne Diseases) on May 18, 2017. Dr. Eva Sapi was presented with the Courage in Research Award. Clinical Neurophysiologist Dr. Elena Frid and Osteopathic Physician Dr. Thomas Moorcroft were the featured speakers. Following are my notes from the conference. Any mistakes are mine.

One theme that emerged from all three speeches was the fact that research about Lyme, etc. is being censored. Why? Why are studies being skewed and misinterpreted, or not published at all? 


Dr. Eva Sapi (University of New Haven)

In the 1980s, they discovered that Borrelia was not just a spirochete but made biofims.

2010 study showed that antibiotics, which are the gold standard, don't work on biofilms.

2012 study: Borrelia Burgdorferi persisted after 90 days treatment in monkeys

Borrelia: most recognized forms are 

a. spirochete

b. round bodies (cysts, granules)

c. biofilm

Biofilms are a collection of microorganisms, like plaque on teeth, like slime in the shower. It has been established that over 90% of bacteria live in biofilm. Biofilms are extra resistant to antibiotics.

Kidney stones (and other ailments) are examples of biofilm-related diseases

The biofilm is like a city, protected by walls. They have channels to bring in food and to bring out the waste. There is a protective layer. 

All borrelia makes biofilms.

At one point in Dr. Sapi's work, her chair received phone calls complaining that her work was not "real science" and asking the chair to shut down her work. She was permitted to continue (fortunately!)

Could other pathogens exist in these tissues? They found chlamydia sitting in the middle of borrelia. Might these two have a symbiotic relationship?


Dr. Elena Frid

NeuroLyme is Infection-Induced Autoimmune Encephalitis

1- infection

2- causes inflammation

3-resulting in autoimmune phenomenon (i.e. ANA (antinuclear antibodies)

Autonomic Nervous System-- responsible for things we don't think about--can be affected (POTS, Blood pressure, sweating, heart problems, digestive system)

Peripheral Nervous System (neuropathy, autoimmune)

This is microscopic; if you do an MRI, you may very well not see any changes.

Glial cells are as important as nerves and are affected by neuroLyme

Einstein's brain had more glial cells than average; could it be a sign of intelligence to have more?

In autoimmune conditions, the glial cells are disrupted

The infection is driving the autoimmune phenomenon

You must treat both--the infection and the autoimmune system--at the same time

Lyme is the Great Imitator; every person diagnosed with ADD, ADHD should be checked for Lyme

February 2017 paper in a Neuropsych Magazine claimed that 50% of people hospitalized for depression have an infection


A bull's eye rash is a gift from G-d because most patients don't get it

Have never seen a patient with just Borrelia; it's not just Lyme

April edition of Neurology (magazine): IVIG article. 320 patients were given IVIG over 18 months in a study of Alzheimers. Study deemed that IVIG does not work for Alzheimer's. HOWEVER, because IVIG is so expensive, the researchers gave only between 0.2 - 0.4 gm/kg instead of the standard/recommended 1.5 - 2.0 gm/kg. Citing this study, insurance companies are not going to pay for IVIG treatments.

IVIG for Lyme: improvement seen in 7-9 treatments; need 2 years of IVIG


Tick Tock, Buzz Away, Insect Repellant clothing

Deet works when wet, not dry

Permethrin: since 2009, mandated by US military for all personnel, even those who are pregnant

Wear all the time, especially if you're doing high risk activity...like going into your yard!

(Someone mentioned how people are more cautious about using sunscreen than tick repellant.)


Dr. Tom Moorcroft

Lyme is old; 5,300 years old at least. And Borrelia has been around for at least 15 million years

Borrelia has 132 functioning genes, 21 plasmids (highest known in bacteria) and there are over 100 strains

Probably over 1 million cases of Lyme a year, if fully tested and reported (USA)

Yale study showed that Lyme (Borrelia) and Babesia co-occur more often than expected

In the Netherlands, 70% of the ticks have Bartonella

Spirochetes are found in breastmilk; unknown whether it passes

Maternal fetal transmission does exist

Sexual transmission: jury is still out; not scientifically proven but many reported cases

If you've had Babesia, you can't give blood

If the Red Cross knows this persists, why can't the rest of the world? 

Transmission: Cook 2014: minimum attachment time is not known

LITERATURE IS CENSURED! There are studies that aren't being published

70% of people get Lyme in in a friend's backyard

5-10 year olds are in the greatest risk category, boys even more so than girls

Diagnosis is clinical

Could literally list symptoms of Lyme for 3 hours without repeating ay

Lyme in children: about 50% present with GI complaint

other symptoms in children: acute behavioral diagnosis, regression

American Psychiatric Association recognizes Lyme can cause psych symptoms



Happens when you sleep

many Lyme patients don't sleep well

Sleep on incline (Samina bed)

incline your bed with the head up; supports brain detox

melatonin helps heal and detox

meditation can hep

nighttime light exposure (i.e. from smartphones) is not good for you

Blue Bockers -use when watching TV

grounding pad for bed; turn off Wifi in house at night


Chronic Group A strep infections in nose; The blood brain barrier breaks down

Simply Saline and Xlear nasal spray

Butiyko Breathing Method opens up nose (Patrick McKeoun)

Randomized, double-blind, placebo trials take the individual out of the study