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






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I wish I was fine

It’s like my brain

is doing a freakin’ crime....


From a rap by a child, age 11


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



Lyme & Adolescence: It's All in the Attitude

Rolling my eyes, trying to figure out these kids. Reminiscing about the sweet babies they once were (and forgetting about the sleepless nights.) How many of the attitudes and arguments I experience with them are a result of Lyme and how much are adolescence? Sometimes I wish I had more children, younger children, so I could still enjoy the wholesome energy and innocence of pre-pubescence. But if I had more kids, they'd probably also have Lyme and also be jaded by the older ones. So maybe I should just be grateful for what I have. My two teenagers and a dog. 

From 1-12, here are the teenage conditions over which I ponder:

1. When is their attitude a flare and when is it puberty? So much angst over being asked to wash a dish. To pick up hair from the sink. To complete a report on time. Are most teenagers like this? Finding the need to push back on "normal" parental requests? Is this adolescent rebellion? 

2. When they don't clean their rooms, when they leave dirty dishes under their beds, when they hoard towels and food in their bedrooms, is this "normal"? I've taken pictures of my daughter's room and now my son's is even worse. OMG--his room! And then he has the nerve to complain about not having clean laundry. Do you know how many times I've found clean, rolled-up socks in the dirty laundry basket? Yes, I still do my son's laundry. It's too much for him to handle. But he MUST carry his laundry to the basement and he's been refusing to do that until the last minute. "Mom! I need these pants! In ten minutes!"

3. Sudden burst of energy when it comes to hanging around with friends does not quite last when it comes to helping around the house. Ok. I get this. Adrenaline keeps me going, too. I need so to be with my friends, to escape our house of stress. When I return home, I'm tired. As a parent and an adult, there are things I must do at home. But my house is not as clean as it once was and I let a ton go. I'm just happy if my kids do have energy to play with friends. My son is working hard at school and often spends the whole weekend resting.

4. As much as we try to have sit-down dinners, everyone wants to eat on their own. Even me. Because I'm often too tired to eat a meal after working all day. But my kids don't want to be with everyone else. And my son wants to avoid all conflicts which increase his stress. Kid + Kid = conflict 70% of the time. That's teen math for you.

5. They both still love and need our dog. They would sleep with the dog nightly if they could but we got tired of the arguments and trade-off agreements. Plus, who knows if the dog is harboring a tick? 

6. They both have moments when they're super sweet. Friends tell us we have great kids. They certainly know how to hold their own with adults. My son can be very cuddly which means he will always be this way, forever and ever. My daughter is extremely thoughtful and giving. When she's not taking my clothes or make-up. 

7. Neither wants to disappoint us. This is a good thing. I think it's this that resulted in my son apologizing to my daughter this morning and changing the course of what could have been a difficult day.

8. Somehow, there's some homework that does not get done. And very little energy to do it once they get home. My daughter goes straight to her bedroom and lies down for a little while. A little while turns into a long while. She's so tired. Then she thinks she did all her work.

9. They are totally different from other kids who have Lyme, yet they share many characteristics. Needing time for recuperation is important for both my kids. My son has had joint pain, my daughter has had air hunger. There are so many symptoms and between both kids, they cover many of them yet they're both so different from one another in the way in which they handle them.

10. Suddenly, both of my kids like epsom salt baths. It's very interesting, as I'm not much of a bath person myself although I've probably given them a thousand baths. Now they're doing it all themselves! Reminder: must buy stock in epsom salts. Someday. They also share a love for music, bands and jamming with each other (son on electric bass, daughter on drums) when they're actually getting along.

11. Normal kids might experiment with alcohol and drugs. My son told me he wants to have a beer once in a while at a party (not that he's going to parties, although he seems to be invited frequently.) He's open with me about it. But he's on medicine. And he's not even yet 16. This is such a dilemma. I was such a G-rated kid but my kids are not aiming for that rating. 

12. Both kids used to participate in team sports. They were active athletes. That's left the building because of Lyme. When my son suddenly felt well a month ago and bicycled about 70 miles in 2 days with a friend, he had a bit of a crash and had to stay home from school. 

So, I'm taking my kids to a rock concert in a month for their birthdays. One of them is worrying about getting along. The other is worrying that the seats are too high. I'm worrying that I won't have any energy left after a class trip that happens to be planned for the same day (which will affect my own Lyme.) But we're all excited--and that's normal teenage stuff! Plus they're excited to go with ME! Their mom! (Who is paying.) So having teenagers is kinda cool, because they're like mini-adults and so easy to have conversations with. But the chronic illness thing definitely throws a dent in the normalcy of everyday life, and in our hopes and expectations. 

Today was a snow day. Several times, I practiced mindfulness and took a moment to breathe and picture myself in the middle of a lake on a warm autumn day, surrounded by golden leaved trees. I think healthy teens can do that to a parent also.


Lyme & Learning: A Lecture

Last night, I attended a talk with autoiummune neurologist Elena Frid, MD entitled: Lyme and Learning: How Infections Can Impact Your Child's Brain. The even was sponsored by Links Academy. Members of Global Lyme Alliance and Lyme Connection Task Force also spoke.

Having spent the last half decade (or more) learning about Lyme from the point of view of a parent and educator, I was hoping to learn something new about educating our children. I am happy that I attended as I solidified some knowledge, had questions answered and am able to perceive symptoms in new ways. I see the "bouquet" of symptoms listed in one of my children. However, there are not many educational strategies that I took away other than to understand that we are dealing with medically ill children who will struggle to learn.

Talks like this further accent the need for national funds to be diverted into Lyme research so that we can develop a cure.  

Please note that any errors in reporting are mine. I have moved around ideas as they were discussed so as to fit neatly into categories.



  • Lyme is misnamed; it is a bacterial infection and more than “just Lyme.” It results in immune system issues.
  • Lyme should be renamed to: a multi-systemic infectious immune issue. Perhaps “Infections-induced autoimmune phenomenon.” The infection is driving the autoimmune process which is affecting the brain and the nerves.



  • If a doctor ever says a Lyme test is negative, run as fast as you can. A negative test does not mean that Lyme is not an active infection. In fact, very ill people stop making antibodies to fight the Lyme.
  • $24 million spent on Lyme annually (Public money); new cases per year: 400,000 now
  • $3 billion annually spent on HIV; new cases per year: 50,000 at peak
  • Lyme is in every state and in 80 countries
  • People suffering from Lyme will probably respond poorly to vaccines. The CDC states that vaccines should not be administered to patients when their immune systems are down. Recommends deferring vaccinations until immune system is strong.
  • 90% of our DNA is made of bugs. When a person gets exposed to an infection that involves much of the DNA, they can develop autoimmune illness.
  • When a child comes into the office with lots of diagnoses, issues with school, friends, it’s a systemic problem.
  • If you go to the primary care doctor, and you give them all the symptoms, they’ll send you t a psychiatrist. But when you go to your Lyme Literate doctor, do tell that person everything.
  • With negative test results, doctors should send a letter to patients stating that a negative Lyme test does not mean that the patient does not have Lyme.
  • Medicine is a Lost Art. Nowadays, doctors have to follow protocols and if a disease doesn’t fit into a nice, neat box, it gets labeled psychiatric.
  • The neurological system is greatly affected by Lyme, whether it be neurodegenerative or neuropsychiatric. Fatigue and/or pain is common.
  • However, a LLMD has to rule out other possible medical conditions before diagnosing Lyme.
  • Treatment consists of 1-3 years and should extend at least 2 months beyond the point of no symptoms. Treat all infections at once (or you won’t be treating effectively.) If in 3-6 months, you don’t see improvement, you need to further explore treatment options. Dr. Frid uses Specialty Labs, Igenex, Galaxy, Advanced Labs, Moleculera (Cunningham panel which can help diagnosis PANS/PANDAS.)
  • Bartonella is intracellular and is in the gut.
  • Babesia is a parasite, which lives inside red blood cells.
  • When the immune system is down, the patient isn’t developing a normal immune response.
  • Moleculera is not available in NY. It is unconstitutional to prevent patients from seeking the best care. Doctors are limited but patients may go to other states for these different labs that aren’t sanctioned in their own state. The Cunningham panel checks for autoimmune encephalitis which is a much better diagnosis and description for this disease. When you go to a new doctor, an emergency room or an educational meeting, do not lead with the term Lyme. Instead, use “autoimmune encephalitis.”
  • A headache is a neurological symptom. Intractable headaches imply larger issues.
  • A “bouquet” of symptoms indicates there could be autoimmune encephalitis:
    • Dizziness, insomnia, visual disturbance, brain fog, memory issues, regressive behaviors, OCD, depression, anxiety, fatigue
  • SSRIs? Not suggested. When you give serotonin, you excite neurotransmitters which can make the child worse. Anti-seizure medicines are recommended (Ativan, Xanax) for symptomatic treatment (note that these can be addictive.) Gaba supplements are recommended as GABA can calm the brain.
  • Sleep issues? These will get better as your treat infections. Ativan is a good short-term drug but will actually cause insomnia long-term. Melatonin and Benadryl are both fine to use.
  • There are patients with permanent damage. MRIs can show neurodegenerative changes.
  • Will you see encephalitis on an MRI? Not always. Other tools to use: SPECT and PET scans.
  • Years ago, doctors took biopsies that showed microscopic, subtle changes (this is no longer done.)
  • If a child is severely ill with neurologic Lyme, there are no hospitals at this time that can treat for Lyme; most children will be placed in psychiatric hospitals.



  • Schoolwork: the brain is inflamed. Trying to compete with people who are at the top of their game is challenging.
  • Reading is tough on many Lyme patients. It’s a mechanical problem. There can be tracking issues; the eyes jump and cannot access the content. There can also be convergence insufficiency where the eyes drift out, not able to focus.
  • A small child might say, “Mommy, I’m tired, carry me.” Then, 30 minutes later, have energy or get excited about a visitor. This just shows the waxing and waning of energy/symptoms. A person with Lyme can be fine one day and not the next.
  • If a child is usually at 40-50% but can sometimes perform at 80 or 90%, there is a good chance of reversibility in their process.
  • Education: what to do when child doesn’t feel well in school? If a child isn’t doing well that day, do a ½ day of school rather than a full day. Don’t work full time for 2 days and then have to recuperate for 5. Work part time, do as much as you can, and recuperate daily.
  • “Their body is at war and in the meantime, you’re trying to teach them calculus.”
  • Glasses with prisms can aid a child who is having eye-tracking and convergence sufficiency issues.
  • If a child is having a bad day? Give them something that comes easily, so that they will have some success so that we (educators) aren’t kicking a child when he’s down.
  • Color-coding, reducing sensory issues can help.
  • How do we best service a child who has these impairments? Neurocognitive assessments can help. Kids like this tend to focus on minutiae and don’t see the big picture; and that can be how they perceive the whole world. The brain is inflamed and overactive.



Take My Kid--No, Really!

Caption: Some days, I feel as though I'm being fed to the sharks.

Ouch. Total honesty here. I need a break from parenthood.

Seriously, I want out. I love my kids. Even like them when they're feeling OK and are acting sweet. I'd love to be given a million dollars with the stipulation that I take them on a shopping spree. But dealing with teenagers can be a dreadful job. And dealing with teens on Lyme is utterly despicable. 

As I write this, my son is quietly going about his own business, yakking up a lung from his recent cold that he can't seem to put aside. My daughter is supposedly doing homework but her bedroom light is dark, so...yeah, there's that. Her dad and I are probably taking away her phone. Again. Until her grades pop back up. 

My husband said, "We must suck at being parents." 

"Excuse me," I said, my mind thinking to all the research I've done, all the doctor appointments I've managed, all the consoling that had taken every tiny bit of energy from my body. "Do you really think I'm a bad parent? Didn't think so."

And no, it's not my husband. He's pretty darned good himself. Except for some of his political views, but that's a discussion we won't even have another day.

The bottom line is: we are tick-bornely challenged. How much of the behavior we sometimes or frequently see is due to hormones? How much is due to tickborne diseases that make their home in all the nooks and crevices in the body? How much is a double combo sub sandwich of Lyme and teenager-itis?

We've really tried to be good parents. We spend time with our kids. Take them places. Have Daddy/daughter dates and all that 1:1 time that they crave. Heck, maybe we don't ignore them enough. Maybe we don't give enough consequences, but that's because you can't have consequences for a kid with PANDAS really, except sometimes, when you know that a consequence will help deter a behavior (in other words, when the behavior is not a symptom.) Believe me, we tried. We had star charts and balloons and prizes plus negative consequences and ways to earn back certain privileges...and all for nothing. 

Maybe I should spank my kids. Slap them right across their cute little butts. Smack those spiteful mouths. Hey, my parents did it to me. But no. I had to have this new-age philosophy that we should not hit our kids if we're trying to teach our kids not to hit others. Be a good role-model and all that. 

I guess they did learn something from our no-hitting rule because they've never truly had a physical fight with each other. Not like my brother and I used to have, with kicking and hair pulling. (To protect his reputation, I will say that I'm older by three years and we don't fight anymore. Not since two months ago. JK.) But gosh darn, when you make kids give up physical fighting, they get mean with their words. Ow.

We have a rule against name-calling. It doesn't always work. Sometimes my husband has even broken the rule. Then I have to get mad at him. And that always ends well.

Last week, one of my daughter's teachers let me know that she thinks my daughter is a great kid, a breath of fresh air. I was high on that perception for maybe 24 hours, until my cherub's air began to reek from the nastiness and anger spewing from that not-so-little mouth.

I don't have wicked kids. In fact, they have their wonderful sides. My daughter actually said to me, "Enjoy this moment when I'm saying 'I love you' because later on...well, you never know about my mood." My son will text me a question and then text back with, "Thank you, dear." Weirdo. But he's a hugger. 

I tried to practice mindfulness as I was driving home with one hungry, hangry child today. When confronted with, "You haven't heard anything I've said," I very calmly answered with, "I heard you say that you want me to take you out for something to eat, that you're very hungry. But we're close to home and going home." In other words, NO! I will NOT give in to your every demand, dammit!

And that's the core...when my child asks for something, and I say yes, I live the golden dream for a little while. I am the BEST MOTHER EVAH. But when I say no, well, I better freaking RUN!  The child will attempt to engage. Beginning with the questions, "Why???????"

I think that the old European custom of apprenticing kids out to your friends for their teen years has a lot of merit. Maybe you only did that if you were a duke or earl or laird...I'm none of those, but please, won't you take my kids for a couple of years and return them to me when they're all sweet and sugary like babies again? Or, barring that, until they find a cure for Lyme? 

Heck, maybe with the Lyme affecting my memory, I won't remember these years anyway. 


17 Ways to Piss off a Kid with PANDAS or Bart


How difficult is it to rev up a kid who is dealing with PANS/PANDAS or Bartonella rages? Unfortunately, not very. In fact, a much lengthier guide is needed to relate how to relieve a child (or adult) from symptoms that can look like temper tantrums...especially if the person in question is flinging around laundry baskets or punching holes in the wall or slapping themselves in the face.

The following are sure-fire ways of instigating anger. Hey, every day is an opportunity to practice your rage-calming skills. 

1. Take away his computer/phone/iPad. Seems that nearly every kid with PANDAS/PANS or sensory issues has need of a technological device that she uses to distract her. 

2. Remove Netflix or TV. And don't tell them until they try to use it. See above. 

3. Tell the child to make his bed. Or to wash dishes. Or to clean up her room.

4. Tell the child to do homework.

5. Insist the child goes to the supermarket with you.

6. Give the child vile liquid medicine.

7. Tell the child to take a shower or bath.

8. Request that the child picks up dog poop. Or throws out his garbage in a smelly can.

9. Give the child a deadline for any project/chore.

10. Try to teach the child to do his own laundry. Better yet, try to get the child to fold her own laundry and put it away!

11. Give a new antibiotic (i.e. induce a Herxheimer's reaction.)

12. Serve a new food. A green one.

13. Leave a door open when your child needs it to be closed. Always. Or sit in their chair.

14. Enforce gluten-free, dairy-free requirements, sugar-free eating.

15. Give a consequence for bad behavior.

16. Change your mind when the child is expecting something.

17. Lose your temper or argue back.

Note: Please do not interpret this as anything other than a snarky guide to show you how EASY it is to rub a sick child the wrong way. While it is difficult for parents, it is especially challenging for siblings who feel they must walk on eggshells around their sick brother or sister. Plus, healthier siblings would have consequences (see #15) whereas it's difficult to determine when an ill child's rage is a symptom or behavior. 

What triggers do YOUR kids have?


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