Musings

 

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 the whispery earth

at tiny beings scuffling about

checking their clocks and bank accounts

 

Ah the life of a bird

Who does not love so much

that it hurts

 

 --LWK

Adult Blog Index

 

You are my 'son' shine 

my little 'son' shine;

you make me happy when skies are grey

You'll never know dear,

how much I love you

please don't take my 'son' shine away

 

I wish I was fine

It’s like my brain

is doing a freakin’ crime....

 

From a rap by Coby, age 11

Wednesday
Jul232014

MRIs and Memories...A PANDAS and Lyme Blog

I lay down on the table, fit my head into the slot. The lab tech drapes a warm sheet across my legs, gives me earplugs, then fits something cushiony over them to further cover my ears. The table slides, spaceship-like, into the cave, pulling me backwards. I stare up into a way too-close wall and close my eyes.

The knocks are deafening, resounding. Beeps go off, then the sound of someone softly sneezing again again again again. Silence. I make up stories in my head to ward off the claustrophobia and remind myself that the room is cold; I can feel the air on my bare feet that stick out from the blanket. I can breathe. I wonder, annoyed, why I don't have headphones and music as I once had previously when getting an MRI in a different location. I think about being on my bicycle, sunny days cycling with friends, talking, adding miles onto my odometer. I'm here because I want to continue cycling. Because I want to figure out how to end or at least manage the pain.

I'd been in this room before. I'd suffered these loud knocks and beeps with tiny earplugs that kept popping out, felt the vibrations of the beast as it tried to determine a medical quandary. Instead of lying on the table, I'd stood by it, holding the foot of my little son as he laid unmoving on the table so he would know I was still there for him.

Four years ago, my son received an MRI for his brain. Something was terribly wrong with my 8-almost-9 year old. Was it--a tumor? Our happy-go-lucky boy was suddenly full of tics, horrible thoughts, nightmares, even when awake. He was sleep-walking, angry, ripping things up and writing on toys. He tried to hurt himself. We had to hide all the knives and scissors in the house. What had possessed our child? 

The MRI provided no clues. We put the little guy through a couple of 24-hour EEGs that gave us no information. We tried; the doctors didn't know much, and we got no answers. PANDAS and Lyme often don't leave those types of footprints. 

He was in 3rd grade that year and since a diagnosis couldn't be made, and his life was in danger, he was eventually prescribed antidepressants and mood stabilizers. He gained 6 pounds in a month and we shifted his diet to more protein and low-sugar, which stabilized his weight. He had always been a thin, muscular little bicycle rider. He was the kid who rode 20 miles with his dad when he was 6.

In fourth grade, he cut his hand with scissors. The meds were not working although we had changed some, increased others. In fact, I had a feeling they were getting in the way of his thinking. We consulted more doctors, hospitals. There were no answers for us. A neuropsychologist met with him over several days and told us that he was depressed because he had a low IQ and couldn't meet our academic expectations. "But he read all of The Chronicles of Narnia at the age of 9--himself!" I protested; "I KNOW he's very smart!" The school psychologist agreed with me.

No one we saw knew to test for Lyme correctly. There had been one Lyme test done, LabCorp or Quest. Band 41 showed up. This wasn't enough to provoke a re-test or further examination.

Not one of the many doctors with whom we worked--pediatrician, neurologist, psychologist, psychiatrist, urologist, gastroenterologist--diagnosed PANDAS. Two hospitals missed the diagnosis.

I kept questioning and researching. I knew the doctors were wrong when they blamed our parenting skills or my depression over my son's mysterious illness or the color of the sky at the moment.... "Why do you think you know more than the doctors?" I heard but I persisted. My child's life was at stake. Something neurological was going on; I knew it. I became convinced that my kid had PANDAS.

We eventually ended up with a Best-in-our-County neurologist who also wondered about PANDAS. He put our son on 10 days of amoxicillan (not a high dose) and then concluded that maybe he didn't have PANDAS when we didn't see a change. 

He didn't know about Herxheimer's reactions, that die-off of bacteria can result in a worsening of symptoms. He didn't know about using higher doses of antibiotics for PANDAS. Apparently, he hadn't read Saving Sammy, the Boy Who Caught OCD or studied in depth Dr. Madeleine Cunningham's work (the Cunningham Panel wasn't yet on the market) or Dr. Susan Swedo's research. He didn't know that ten days was not enough. He also didn't look for Lyme Disease.

Fifth grade began and so did our first visits to real PANDAS doctors. More than a year and a half after the sudden onset, more than two years since some random symptoms emerged, my son was finally diagnosed. We saw three different doctors over the course of that year and the diagnosis was confirmed. When antibiotics didn't help, he finally received his first IVIG. During this time we briefly saw a developmental pediatrician in our vicinity who took our insurance but didn't truly understand PANDAS. He got annoyed with my son's behavior in his office.

Six months later, we had a diagnosis of Lyme as well. This led to major Herxheimer's reactions as we began treating without detoxing. He had joint pain but much of his Lyme was neurological. No surprise there, but his horrible reactions to the die-off of bacteria were shocking and life-threatening.

We quit that Lyme doctor after he couldn't help me detox my son and suggested we bring him to ER on a Sunday afternoon. We then tried homeopathy and acupuncture. The acupuncturist was fantastic and could have been a great therapist in addition to her own work. The homeopathy never kicked in and the homeopath believed that antibiotics would compromise the effects of her remedies. We tried an OCD specialist who didn't believe homeopathy would work (it worked totally for a fellow PANDAS parent who started at the same time,) yelled at me for taking notes when we met and told our son that his sister had PANDAS also. Finally, we shifted gears and after a six-month wait, saw the famous Lyme pediatrician Dr. Charles Ray Jones. Added a Lyme psychiatrist. We removed him from the mood stabilizers. His appetite fell off completely; he didn't like his favorite foods anymore. 

Sixth grade. My son broke his arm after a week of school and needed a scribe. He would go to school one day, then have trouble going the next. He never showed any fever or sickness bur constantly raged at home, cried, was not himself. "Mommy, hold me," he'd beg. "I'm gonna have a rage." By November, I had revisited a Lyme social worker for guidance and we pulled our son out of school to be tutored at home. We added one last doctor to the team although we were running up our credit card debt with all the doctor bills. She had come highly recommended.

This doctor was special. In the beginning, we didn't go to her because she doesn't work with insurance. Well, neither did the psychologist, the psychiatrist, the neurologist, the OCD specialist, the homeopath, the Lyme doctor, the acupuncturist....we were running out of money and my husband was working part time so that he could be at home to take care of our son. I was teaching other people's children, and frankly, it was sometimes a vacation to be at work.

After more IVIGs, treatment for Lyme, a diet that eliminated all the food sensitivities, after following every direction given by the integrative pediatrician and trying different remedies for our son's migraines and rages, our son suddenly returned to us. It had been over three years that we'd pretty much lost our little boy.

Over his seventh grade year, he continued to slide up and down, react to any germ that floated his way, any stressor. But he never fell quite as low as he'd been. He was excited to study for his bar Mitzvah and wanted desperately to return to school and his friends.

More and more, like a foot stuck in quicksand, our son began emerging from that dark, gritty place. We kept waiting for him to be sucked back in, but it's been many months and he's with us. A recent IVIG returned him to PANDAS world for a couple of days but he recovered. He estimates that he's about 65% there. We still have a ways to go, if we can hold onto that 65%.

My son gained some weight, lost more weight and is growing. He still wears some of the same clothing he wore a few years ago; nothing is completely linear with him. One of these days, he will go through a large growth spurt and require larger sizes. One of these days, he will be taller than me. Already, he's a stronger bicycle rider who taught himself to unicycle. 

And so I, too, have an MRI at the same place our journey started years ago. I meet with the sports doctor to discuss the pain in my right hip.  I tell her why I'm reluctant to get a steroid shot, that steroids are contraindicated for Lyme and I fear it will make my hip a breeding haven for the spirochetes. She questions my Lyme infection and wonders if it's current. I tell her that the IgGs show it's active right now. It's language doctors understand. And then I tell her just a little about my kids both having Lyme and that yes, it's congenital.

I leave her office, sad that my too-young back is showing arthritis, herniated disks and disk bulges. I come home, and with my husband's urging, make an appointment to get professionally fitted for my bicycle. Something's gotta change--either my handlebars or my bicycle. Because I'm gonna continue bicycling no matter what.

Monday
Jul142014

On Brain Fog and Feeling Like My Kid

I've got brain fog. Oh my G-d. I can't think. Actually, I can, but I have to work extra hard at it and the anxiety over having trouble thinking is getting in my way. Plus, it's all exhausting. Can't I just go back home and nap?

I'm back at work this week, planning curriculum/projects for the school year. I didn't want to go back. I've been home from school for two weeks. The first week was spent going with my son to IVIG and taking care of him after, as well as visiting my own Lyme doctor then taking my own new antibiotics and experiencing my own Herxheimer's reaction. Easy peasy, lemon squeezy, as my daughter used to say.

The second week was spent calling my son's doctors because he wasn't faring well after the IVIG. And bicycle riding. Yep, I'm back on the bike, and when I finally get my butt on that bike seat and start peddling, much of my lethargy takes a back seat (umm...there's no back seat on my bike.)

Sleep has also defined my life lately. I can sleep ten hours. Or more...? I creep out of bed (and do my physical therapy stretches) only because I'm the one who knows how to prep my kids' meds. I don't know if I'd wake up otherwise, until maybe 2 PM. Gosh, I should be simply gorgeous after all that beauty sleep. 

So, this morning, I was miserable and chiding myself to have a better attitude. So WHAT if my stomach's a mess! So WHAT if I had to get up "early" in the summer? So WHAT if I feel like sleeping every half hour? So WHAT if I left my cell phone at home and had to turn around and grab it because I'm LOST LOST LOST without my cell phone, baby!

This is my job and I'm good at it. 

Well, until this morning. I walked in JUST IN TIME. I'm someone who likes to be early. We received a list of everything that we could/should work on, as my colleagues and I are studying problem-based learning writing with a consultant. And then the stress attack began. 

Nobody knew how anxiety-ridden I really was (I think...except the colleague I confided in? But she didn't realize how extreme it was for me because I was smiling as I told her.)

I couldn't even log on to the requisite google doc (neither could others.) The printer wasn't working. I couldn't copy from one google doc to another (which turned out to be not my problem.) I had come with a list of the activities I want to accomplish but even that list was and continues to be overwhelming. I had committed to working 6 days but changed my mind. 

If I don't work all 6 days...and I'm not,  I will still complete these units but I won't be on the clock. I'll do them on my own time instead of earning the money that goes to pay for our Lyme doctors (notice the plural?) In fact, it's evening and I've been googling ideas for my projects. I'm dedicated. I'm just not 100% healthy. 

Happily, I did make it through today, with more direction for a now combined science/social studies unit that will ignite my 5th graders creativity and hopefully help them make great learning connections. Sounds good, yes?  I still feel very air-hungerish over it all. Last year, I was chockful of ideas. Now, I'm a puddle of lowly emotions. 

My son has been through all this for months, maybe years. So many days, I prayed (yeah, I do that sometimes even though I claim to be a nonbeliever): let me be afflicted instead of my son. He's so little. I can handle it.

Well, I guess my vote of confidence in some higher power was heard. I have Lyme also. I have brain fog. I am having trouble with my own executive functioning skills which is really super hard for me because I have always been a great learner and teacher. I'm probably also herxing. I'm trying to whip this Lyme's butt and I really need my summer to do that, because I need to get my thinking-brain back for September.

I'm here to tell you how it feels. Frustrating beyond belief. My thinking feels like frozen molasses sliding from the jar into a bowl--and don't interrupt me because I'll forget my thought. My short-term memory is shot. What did I just write? My short term memory is...you get it. Like I want to shout to the world that I'm having trouble (and it's not normal for me!)

Yet, no one really understands. No one truly cares.  Only others who have Lyme get it. And it hurts that no one really grasps how difficult it is to be a parent of a child who has been ill for so many years. And a parent to another child who shows symptoms. And a parent who is also ill, albeit not that much compared with others. I always compare myself with others. I have no right to feel so sorry for myself!

The good news is that I went for a short bike ride with a friend/colleague right after the 6-hour thinking-hurts-my-body day and it felt wonderful! The road melted under my wheels. We talked, laughed, finished the ride in too-short a time. I came home, took a HOT shower and listened to the thunderstorm, warm, safe and dry.

And the other good news is that my son is thinking again. So maybe I did take the brain fog burden from him. 

Saturday
Jun212014

Fatigue is Busting Out All Over!

A month has skittered by since I've last written. I have had nothing to say. 

No, that's not true. But my brain is just not working well and I have no left-over energy after teaching all week. My name is Lisa and I'm chronically fatigued. There, I've said it. 

The irony is that I'm a pretty good teacher; I can summon up my energy for the classroom. Last year, at one very tired point, I tried to drink caffeinated coffee (caffeine and I do not get along.) Oh, I felt myself to be a witch! I worked so hard to refrain from being mean. That took even more energy!

Another irony is that, after resting all day Saturday, I can hop on my bicycle on Sunday. If I'm with a friend and I have a Gu Energy Gel every hour, I can bicycle 30 miles at an adequate pace. Or I can bicycle 14 miles inside of an hour. I'm free, I'm flying, I'm soaking in the density of the green leaves and the blueness of the sky. But I'm also counting the miles until the ride is done. I'm not enjoying it the way I used to.

Today, I had an hour to ride. Couldn't eat much for breakfast. I raced for the first half hour, felt my heart pounding. And then, I lost my energy. Had the half hour ride back. The culprit is my odometer--with cadence. I admit I'm a little obsessed with tracking myself and I'm very competitive with myself. I could've stopped on the side of the bike path and taken a snooze. Needless to say, my time was not as good as it was last week.

Sigh. I realize that I must sigh a zillion times a day. I wonder if it's a symptom of babesia for me. I do think my sighing is a way to get more air. I have an appointment with my Lyme doctor in a couple of weeks to revisit my treatment (and diagnoses.) This Lyme stuff is pretty sneaky, Sis.

My daughter shows signs of Lyme and co. as well. She was always considered to be the "well child." Now, I stress about her, although she is in no way even 10% as ill as my son ever was. I can look back and see all the signs--her sweaty little infant body, her fever at 2 weeks old (and hospitalization at none other than Westchester Medical Center where a spinal tap was conducted.) If they had any proof of Lyme then, it was never communicated to us. If they even performed a Lyme test. An Igenex test a year ago (positive by CDC standards) and a very recent zytoscan has given us all kinds of necessary information about her.

The GOOD news is that my son, who was terribly sick with PANDAS and Lyme for 4-1/2 years, is now back in school full time.  What's more? He's getting As in math! Math, of all subjects!

Wonder of wonders, miracle of miracles

He LOVES school. LOVES being with his friends. Enjoys learning and likes all his teachers. His math teacher has emailed me a few times to share how well he's doing...and she pulled him out of a class soon after he returned to school to show him the result of his first quiz there--which was outstanding. We really appreciate his math teacher!

Even four months ago, he struggled mightily with math. 

But, my son fatigues by the end of the day. His brain is fried. Yep, I know how he feels nowadays. I've requested that he not receive homework and the school has complied. When he is ready, he will want to do it. I probably have one of the only children in town who actually WANTS to go to school. He WANTS to be a great student. He is proud of having kids ask him how to do math calculations. I know that when he can handle it, he will WANT to do homework! He wants very much to be a "regular kid" and do what everyone else is doing.

He talks about studying and working hard in high school, so he can get good grades, attend a good college and someday become a doctor. I just want him to be enabled, to have choices in life. It's what all parents long for, but it's something we parents of kids with PANDAS and Lyme don't take for granted. Our children may not be empowered. We might not have college funds anymore after using them for medical expenses. Our children's futures are not guaranteed. But, neither are they guaranteed to be negative. At any point in our lives, when we put in the work, good things can happen. 

Right now, my own fatigue is definitely a deterrent. For weeks, maybe months, when home, I've just wanted to lie on my bed and rest. When I'm driving somewhere, I feel this heavy tiredness, like a thick fur coat, settle over me. If I'm walking around, I feel dizzy. It's like I've checked out of my day. My husband has calm, interesting conversations with the kids while I mope about. Well, not exactly mope. But I just don't have the energy for all that. I want to cuddle them, talk to them, but I also just want to be alone.

Leave me alone, leave me alone. I wonder how many people with Lyme feel that way? I clean a little, then lie down. Do some laundry, then lie down. Talk to neighbors or friends, then lie down.

I had mononucleosis when I was 20; I know what it's like to sleep through day/night/day/night. I'm in no way as bad as that. I can push myself to do just about anything. When I was first pregnant with my son, I was nauseated and tired all the time. I'm in better shape than that. Hey, gotta keep it in perspective. But it's depressing and debilitating anyway. And it's not going away. 

I have projects in mind that I'd like to work on, goals I want to accomplish. My work is not done, in school and at home in terms of PANDAS awareness. I'm accomplishing a lot at my job. I promise to do more at home. Someday, I'll write those novels I've planned. Someday.

Last night, I stepped out of the house into our first summer evening of the year. My son was sleeping over the house of a friend; he and his friends had biked back so that he could pick up his things. Two of his friends had bikes attached to wagons or carts--these kids are an interesting, creative bunch. As they bicycled away, I breathed in the cooler air, gazed at the expanse of bluish black sky, the spindly tops of trees, and felt small in this big world.There is so much more life ahead for all of us. There are good days ahead.

Everyone has their own path, their own time frame. For so long, when reading about other people suffering from Lyme, I told myself, "I don't have it badly. I have nothing to complain about. I can walk, bicycle, work." But I do have Lyme. And I feel it daily. As do both of my children. Maybe it's OK, once in a while, to acknowledge that sometimes it's too much for me. My daughter was 6 when our descent into PANDAS hell began; she witnessed it all. My strong drummer-girl, who has compassion for so many people with disabilities, is not totally unscathed. None of us are.

My son's journey into recovery is enough to give all of us hope. There was a time that I didn't think he'd make it. At 8, he was suddenly suicidal. At 11, he didn't want to live. And now, nothing will stop him. Does he still have symptoms? Hell, yes. Is he still on medicines? Absolutely. We will do whatever it takes to get him through. And after all our hard work, and that of the doctors, he's doing well. If it can happen for him, it can happen for anyone. Provided that medical treatment is accessible. 

And that's why I continue to write. To let whomever stumbles upon my website know that it's possible to heal from these medical diseases. To let the world know that these illnesses exist and are not psychiatric. To confirm to myself that there is a greater meaning in life.

*****

One very special person whom I met through the PANDAS/Lyme community is Melissa Kerins. Despite dealing with her own challenges and those of her three children, she has been very active in trying to free Elizabeth Wray from the clutches of Boston Children's Hospital. For many months of Justina Pelletier's captivity at BCH, Melissa organized peaceful marches. She has done so much for our children. Now, it's our turn to give back. Melissa has been diagnosed with cancer. Please help, if you can, through prayer, supportive words or donations.

Wednesday
May212014

Merry Month of Lyme

Fatigue. Anger. Sadness. Loss.

Money. Lethargy. Head pain.

Having my eyelids peeled back with tweezers till I am forced to glare at reality. 

Witnessing the worst and best of people.

That's what Lyme Disease means to me.

Lyme means false diagnoses for my family. It means an internist sweetly asking if I want an antidepressant when I complain about being lethargic. It means a pediatrician telling me that my daughter is stressed (hence her air hunger) and insisting that a positive Lyme test is a FALSE positive. It means that when band 41 came out positive on my son's first Lyme test, more than four years ago, it went unacknowledged by two neurologists and a psychiatrist who struggled to figure out why a 9-year old kid would try to kill himself.

It means that PANDAS and Lyme are entwined for my son. It means that Lyme was probably always there, but strep pulled the trigger. It means that there are many fantastic PANDAS doctors who are still relying on LabCorp and Quest tests and are therefore telling patients that they do not have Lyme Disease when in fact they do.

Not everyone has Lyme Disease and co-infections (Bartonella and Babesia are some of the more insidious and evil ones.) But Lyme and co. is not called the Great Imitator for naught. Chronic Fatigue, Fibromyalgia, arthritis, lupus, etc. etc. are many times induced by Lyme Disease. Lyme: the disease that spawns autoimmune disorders. 

Lyme means that the government is not supporting me through legal and medical measures. I happen to be positive for Lyme Disease by CDC standards because I'm healthier than my child; therefore, my body can make the antibodies and fight this bacteria (to some extent.) The CDC ignores people like my son, who has been too sick for too long to make the antibodies to fight Lyme. The IDSA (Infectious Disease Society of America) believes in tests that continue to give false negatives, tests that only examine a few of the tattle-telling bands of Lyme. Just this past year, my government increased its estimate of NEW Lyme patients each year from 30,000 to 300,000. Fifth grade common core curriculum teaches place value. How is it that an estimate is off by this much (per year?) And...to tell you the truth, I don't think I was counted in that 300,000 last year. I don't think my daughter was counted either. Make that 300,002. Maybe the government is not smarter than a fifth grader.

Ummm...wouldn't ya think this is an epidemic? Like, worse than the 100 or so cases of measles that keep making the newspapers?  And...how about those studies that show that Lyme and co-infections can be passed through the placenta to infect the unborn child? How about all those studies--conducted by IDSA researchers--that show that 3 weeks of doxycycline are not enough to kill off the Lyme bacteria? Hello? Anyone home?

I took my daugther to the homeopathic practitioner today. I know that my bright child is struggling with attention and focus. I see it at home. Hourly. We came away with a list of supplements and remedies. And another bill. I like this woman a lot. I don't like the bills that are associated with her and with every other doctor we see. I would love to take my son, my husband and myself to this homeopath, who uses a zyto scan and therefore has access to information that blood tests don't show. I wish the zyto scan was not "so alternative" and would be covered by insurance. Someday. 

I came home, through thick traffic, to help my son with his math homework. He continues to struggle with math. Call it PANDAS. Call it Lyme. Call it Bartonella. I love algebra but my firstborn does not. Lyme brain. I was tired, just wanted to be alone. My husband made dinner. What would I do without him? I took the medicines out--the ones we take during dinner. The ones we take away from food. Love that Byron White A-L. I added one drop Saturday night (to make 10) and woke up extra tired as well as depressed on Sunday. Reverted to 9 drops Sunday night and woke up OK on Monday. As I sit here, propped against pillows, I feel electric zaps in my leg. My entire head aches as if my hair has been in a ponytail all day. I walk around dizzy during the day. But no one knows. And frankly, no one has time to care. 

Treat the Lyme and the autoimmune diseases will be easier to handle. Treat the Lyme and maybe I won't end up with Alzheimer's. My grandmothers lived to be very old. How will Lyme Disease affect me? Will I be able to bicycle when I'm 90? You see, another big problem with Lyme (shhh! It's a big secret!) is that it NEVER goes away. 

But, if we keep our bodies super healthy, we will have the strength to battle the bacteria and keep it under control. Exercise, low or no sugar, healthy foods. Must avoid anything inflammatory. I've gone gluten-free but I swear, I need chocolate! Dark chocolate is bad enough to a milk-chocolate lover but chocolate without sugar is impossible! I have no energy. I can't handle caffeine. I'm not a big drinker. Aside from my Lyme meds, I don't do drugs. Must I not have even a single vice? 

I received a message today--a very kind message--from a representative of an organization that really didn't want much to do with my family when we lost the financial ability to belong. At the time, I was upset but too steeped in my son being hugely ill, too ashamed that although we look OK on paper, we didn't have the funds to "even pay X much." It all came back to me today, through this person's caring, and I cringed. On and off all day, my eyes welled up. I guess I never took time to grieve this loss before. When I think of it, this organization could have done so much to help us. If my child had been diagnosed with cancer, I don't think we would have been treated this way. But depression, PANDAS, Lyme? What a crazy cocktail.

Well, these crazy medicinal cocktails, from IVIGs to supplements to all kinds of doctors and therapists who won't or can't work with insurance have done us in. My husband and I have brought our kids to doctors who could help--as have many other parents in similar positions. These doctors and their remedies cost money. Insurance covers only a fraction of these bills. We've gone through savings and incurred debt. I mean, who wouldn't? These are our children! And the doctors we see are those who risk a lot to save our children. I can't blame them for not being able to work within the system. Heck, the system would've locked up my baby. 

So now we're faced with a major financial setback that has no chance of going away unless we win the lottery (oopsies, we don't play.) We still have our home, but our mortgage payments are often late. Sometimes, we have to wait for the next paycheck before making any new purchases, including grocery runs. We can't afford vacations but we'll do everything we can to ensure that our daughter gets the braces she needs on her teeth and that both our kids see specialists who can treat them. We have no college savings but we'll find ways of helping our children go to decent schools when the time comes. I had a big birthday that came and went without any sort of celebration. My inlaws made sure that my son had a real bar Mitzvah. I'm stressing about camps for summer and applying--and getting approved--for scholarships. This is what Lyme and PANDAS have done to my family. 

And then there's me. I teach and I'm tired. I come home and I'm tired. I'm always tired. Blah blah blah. That's how my kids will always remember me. But I can bicycle 25 or 50 miles.

We're heading in to Memorial Day weekend, and for the first time in a long time, I've made arrangements for Saturday, Sunday and Monday. We're spending time with good friends. I'm getting OUT. For too long, we've been secluded, avoided having guests (well, who wants to see the broken ceiling in our kitchen!?) Having guests stresses me out even though my husband does the bulk of the cooking. I used to plan parties all the time! I love people! So, I'm starting slowly with people who don't judge me. I will bake gluten-free, dairy free, full of sugar and chocolate brownies for the party we are attending at another friend's house. I will live and enjoy my time with people who have stood by us, made us laugh, given us hugs.

For although this has been a most surprising and difficult journey, (and I've met some difficult people--but I won't list them here,) I have somehow surrounded myself with the finest people around. We have friends who never left us. We have new friends who have learned about Lyme through us and we have friends and supportive acquaintances in the PANDAS and Lyme communities. We have found treasures...from the teacher who tutored my son through his bar Mitzvah to the educational advocate who helped us deal with the school system to the doctors who have given us hope. 

Lyme Disease and co. and PANDAS are horrible and I don't wish them on anyone...well, I take that back. I know I'm a fifth grade teacher and I try to find the best in everyone, but I just can't be that nice. I do wish Lyme on a couple of people. There. I actually wrote it.

However, these diseases have also led me to know a lot more about the human body, neurology, immunology, the will of people and natural medicines. They have also brought me to know many more than a handful of the best people on earth. 

You know who you are. XXOO

Wednesday
May142014

Danbury: Lyme Conference

I attended this conference at the last moment, to work a PANDAS table (or half of one) with a fellow PANDAS/Lyme mom/advocate. We shared the other half of the table with a very engaging chiropractor/Functional Medicine Practitioner who offers a treatment to manage neurotransmitters. I am very interested in learning more aobut this.

I sat in for Dr. Stephen Phillips' presentation. Sadly, I left just as Dr. Robert Bransfield was about to speak. I admire him greatly; we brought my son to him. Dr. Bransfield has written many important articles about the neuropsychiatric symptoms of Lyme Disease. He even attended a PANDAS Legislative meeting in Hartford, Ct. But it was 8:30 PM and I was already tired (and had to get up at 6 this morning to go teach.) 

Here are some highlights from Dr. Phillips' talk. Any mistakes are mine. All links are mine. Dr. Phillips is quite knowledgeable and presented a good deal of information. He seemed to me to be a doctor who treats aggressively, someone who looks for clinical evidence, and a medical practitioner who is not afraid to risk angering the staid medical community that still abides by CDC guidelines in his quest to heal people.

*It's uncommon to just get infected with borrelia. There are almost always co-infections involved, even if they don't show up on blood tests.

*Erlichea--you can get rid of it.

*Anaplasma--is also more easily treated.

*Bartonella has over 25 strains but we only test for 2! Bartonella is also more drug-resistant than other diseases/infections. Babesia is also more challenging to treat.

*Dr. Phillips has treated over 100 patients who are also doctors since 1996, but only 3 or 4 of the will treat Lyme Disease. Many doctors don't want to deal with Lyme Disease.

*There are many studies, even conducted by IDSA (Infectious Disease Society of America) researchers that prove that Lyme and co. do not leave the body after a few weeks of antibiotics. Electro microscopy and PCR hae found evidence of Lyme. There are several NIH sponsored studies that demonstrate that antibiotics, given for a short time, do not cure the person of Lyme. Yet IDSA doctors still treat with just a few weeks of antibiotics.

*It is "an egregious oversight in the IDSA guidelines," said Dr. Phillips.

*"You don't believe in Lyme? It's not a religion," he said. "You can't ignore the facts."

*Lyme isn't always in the blood. It can be found in cysts, now referred to as "round bodies." Plaquenil kills these round bodies. 

*In one case history, Rifampin, given for 2 months, reduced psoriasis. Why don't rheumatologists use antibiotics more often if so many studies show they work for arthritis (and psoriasis?)

*Fluconazole gets right into the brain.

*There is a high correlation between MS and Lyme and Fibromyalgia and Lyme. Lyme can be indistinguishable from MS, and is a likely cause of MS. There have been many studies conducted that prove this. So, as Dr. Phillips questioned, why isn't THIS on the cover of the NY Times?

Note: it was wonderful to see several of the doctors who are treating my family there. Dr. Charles Ray Jones attended, most probably to give his support to the presenters. He received a standing ovation.