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

Ah,

the life of a bird

who does not love so much

that it hurts

 

 --LWK

 

 

 

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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

Saturday
May162015

Lyme Connection Conference: Notes

On Tuesday, May 12, I attended the Lyme Connection conference in Danbury, CT where friends and I ran a Lyme Disease Challenge table, giving out quite a few limes and pictures. I also had the opportunity to hear Ms. Pat Smith from Lyme Disease Association and Dr. Richard Horowitz (Why Can't I Get Better?) speak. Following are notes from the conference. Any errors in reporting are mine. 

Pat Smith from LDA:  

Lyme is the 5th most common nationally notifiable disease

37% of reported cases are children, aged to 18

Children aged 5-9 and 10-14 are at the highest risk for contacting Lyme Disease

7% of the reported cases from 2001-2010 were aged 0-4 years old

Alan McDonald found evidence that LD is transmitted via placenta.

Dogs act as sentinels and are 50% more likely to get Lyme than people. Cats CAN get Lyme. Dogs are like canaries in the coal mine; if a dog gets Lyme, you've got Lyme Disease around.

The Lonestar tick is as far north as Maine now. This tick will actually RUN after you. It's very aggressive.

The Western black-legged tick is not safe and is found in CA and other areas.

Why do some doctors believe that it takes 24-36 hours for a person to be infected with Lyme? Well, the bacteria in the mid gut takes time to migrate up to the salivating glands. Dr. Burgdorfer said that sometimes the bacteria is ALREADY in the mouth. Therefore, a person can be infected upon the first bite. Indeed, prior notes on this site have quoted Dr. Jones as saying that he treated a 3 year old who was infected within the first 15 minutes of being bitten by a tick.

Sometimes ticks secrete immune modulators.

If you live in a nonendemic area and you get a bull's-eye rash, you might not get treated because the CDC changed their criteria. This bodes disastrously for people who have been infected.

Q-fever is on the rise.

There are 15 tick-borne diseases on the LDA pamphlet and its already out of date.

There is also the Heartland virus and the Bourha Virus.

Tick paralysis is caused by a toxin in the tick.

Meat allergy--the tick bite triggers an immune response to a carbohydrate in red meat, 3-4 hours after exposure.

The FDA wants to take over Lyme testing and specialty testing. 

The U.S. Military shows clusters where the military treats Lyme Disease. They have a program wherein they collect ticks and send in; have discovered that Lonestar ticks have been moving up into Connecticut. 

Legislation is the last resort; it's quite complicated.

Dr. Horowitz and his 16-point model:

Chronic disease accounts for 70% of deaths and 75% of healthcare costs in the USA per the CDC.

Doctors don't want to hear about or treat chronic Lyme. Use the term Multiple Systemic Infectious Disease Syndrome (since that is what it becomes.)

Global warming is increasing ticks; ticks came out three weeks earlier this year.

Overlapping viral infections are showing; these also can result in joint pain.

16% of dogs in Vermont have Lyme Disease.

Relapsing fever infections- borrelia Hermsii:  the standard 2-tier test won't show this!

Babesia is in 40% of the ticks in Hudson Valley, NY.

The mother tick transmits borrelia myamoti to its larvae.

If you have central nervous or peripheral nervous system symptoms, 30 days of doxycycline will not be enough to cure the disease.

Borrelia Myamoti can also cause an EM rash. 

Must treat Lyme in all its forms (cell wall, cystic, biofilm as well as spirochete.) Doxy alone will not cure you.

Do you have a pain syndrome that is resistant to treatment?

Hormones have to get back in to balance; the pituitary gland is affected--this must be fixed in order for recovery.

Biofilm infections: Salmonella persists because of biofilms; chronic sinus infections also persist because of biofilms.

"You're allowed to have more than one disease." -People can have another disease besides LD.

Adrenals are low in 40% of people; there are also many mineral deficiencies.

Eva Sapi is studying mycoplasma now.

Co-infections are the RULE if you're not getting better.

Babesia: cough, air hunger

Brucella and Babesia are causing problems in our population

Lyme mimics psychiatric disorders; People with the most trauma in their life are the most difficult to treat

Neuro-dysfunction: memory and concentration problems caused by LD can result in the "dumbing down of America"--heavy metals can affect these processes as well.

More men have low testosterone because of LD

Sleep Disorders! Drugs get you to Stage 3 & 4 sleep

Stool: CSDA comprehensive stool sampler: Babesia and parasites often overlap. Use of Alinia and other meds.

Doctors can cure LD in 75-80% of cases in the first 30 days but can't pick up the antibodies then.

Do cytokine panel--cytokine signature--but how does this change with babesia and bartonella?

Detox: Alka Seltzer Gold, Sodium bicarobnate, oral liposomal glutathione, clay, charcoal; you have to pull the neurotoxins fromt eh body

Cowden and Zhang work in 70% of cases.

Candida can mimic Lyme with joint pain and fatigue

You have to go after inflammation. 

Low dose Naltrexone

NrF2-in mycoplasma of cells, stimulates genes to increase detox and reduce inflammation

-eat broccoli, cauliflower, kale, curcumin

The wrong diet can stimulate cytokines; get off sugar and gluten

Cadmium is showing up in more people

Aluminum is also showing up and this can cause memory issues

Use glutathione, Nac, B vitamins

Do a full hormone panel

 

Monday
Apr132015

Call Me Complicated

I'm complicated.

Truly. 

I can't eat anything with dairy in the morning or the evening within two hours of taking doxycycline. I already don't eat pork or scallops or cheeseburgers. I avoid gluten. I avoid high-fructose corn syrup, soda and fried crap. Usually. 

I mustn't lie down an hour after taking said doxycycline. 

I mustn't be out in the sun too long lest my face start to burn. Even with sunscreen on for a one-hour walk, I get enough pink in my face to last into the next day. I long for a vacation or even a bike ride but I'm thinking I'd need to wear a burka to the beach unless I get off of this medication.

Yes, I long for a warm, beach vacation with relaxation and cocktails. Oops, there's another no-no. I've gotta schedule those cocktails around the tindamax. But here's the paradox: when that day of the week comes that I can once again imbibe an alcoholic beverage without losing my supper, I no longer want one. 

All I want to do is lie down when I get home from work but at least one child needs me to help with homework so I have to remain semi-vertical (sitting position.) I'm writing this while helping that child now.

I need a half hour every Sunday to distribute medicines for three family members into little medicine boxes. My husband calls me "The Pharmacist." Someday, there will be a horror movie with that title. I will not star in it. 

I need sleep. Eight hours is nice, but nine hours is sweeter. I've always been this way and have never been able to pull an all-nighter, despite 4 years of college and two bouts of graduate school. Actually, I loved graduate school. It so wasn't the real world. I'm better at getting As in grad school than in the real world. 

Just call me Mother of the Year now and get it over with. You know I've got you beat. My kids always know where I am. IN MY BED. OK, so it's an open-door office-type situation with a king-sized bed that fits all my visitors. We're a modern family. 

Naps and rest-periods beckon. I fold a load of laundry and have to lie down for ten minutes and read. I take a shower and lie down for ten minutes with towels wrapped around my body. I wash dishes, standing in one place, and my hip hollers at me to lie down and stretch (and read again.) Heck, even when I'm teaching, sometimes I lie down for a few minutes during my lunch hour (40 minutes)  when the students are out of the room. Shh! Don't tell anyone. It's kinda weird. No, it's kinda complicated.

I must always, always, always have a book. If life is calmer, I can read more literary tomes. When my homelife is tumultuous, I need a book with a happily-ever after or mystery solved. Take me away! In lieu of Calgon baths, I submerge myself in the product of countless trees. I keep the library system working and librarians employed.

If I'm complicated, one of my children is a downright conundrum. A friend used that word earlier today and it stuck in my brain like a chicken claw. Which is cool because vocabulary and the names of recording artists are slipping through the bars of my mind like water down a sewer lately. Right now, my kid does not want meat or fish or almond butter for lunch. He wants nutella and no-nut butter. He doesn't love his hamburgers anymore but he loves lamb. He withers away from eggs and leftovers like a dog backing away from a crazy-eyed monster. He will eat sushi as if it's penny candy.

My family is complicated. Just when my husband and I get invited to a fun party, guess who gets sick? Do my kids do it on purpose? We have very few date nights. Rather, we tend to steal away for a morning at the riverfront with a bagel (gluten!) and cream cheese (dairy!) and then I have to skip my morning dose of doxycycline. And just when we visit someone in the midst of a kid-flare, the dog decides to take a dump on that visitor's floor. I'm coming to your house next. Pick up the carpets.

My friendships are complicated. What do I have to talk about? pandaslymepandaslyme LYMEDISEASECHALLENGE pandaspanspandaspanslyme plus barteonellababesia blah blah blah. And teaching. My lovely, purple classroom with my lovely students and our exciting projects and the core curriculum and the standardized tests from hell that they're goin to use to decide if I'm a good teacher or not. Don't get me started. I can only feel for the teachers of my own kids should they take the tests. We're complicated. My kids are opting out this year.

Exercise--I need plenty of it. Makes me happy. Makes me sleep the next day also. I was told I should NOT do yoga with my back and I was told I should do yoga with my back. Arthritis and herniated disks and scoliosis, oh my. Lyme complicates things. Still, I bicycle when the weather is warm. 

Technology is confusing but I'm totally capable of learning it, you'd think? So now, you're gonna call me lame brain or Lyme brain or complicated or technology-challenged, but I just discovered something by accident. Out of nowhere, I came across pages of pages of comments just awaiting my approval to be published. THREE years worth of comments. I am so very sorry if you were one of those people and I never responded. And I thank you for sticking with me and still reading! By the way, I approved all the comments except for the ones trying to sell me designer-like bags with stripes going in the vertical direction to make me appear taller and the ones in Chinese that were probably selling me designer bags or thinking this was a site for the black and white pandas that aren't really bears.

Call me dumbcoff. Call me complicated.

Just keep calling.

Tuesday
Mar312015

A Typical Day in the Life of a PANS Family

"Mommy, are you angry with me?" My son asks for the 13th time. Only because my daughter is having a meltdown and is yelling at me until I begin harrumphing and seething and threatening. 

Background: My daughter had a sleep over from Saturday to Sunday, and another from Monday to Tuesday. It's vacation week and I want her to have fun and play with friends. But now it's time to catch up on all that homework she never completed and/or turned in. Some of it she did, she claims. Some of it was thrown out (before it made its way to the teacher.) Some of it is in her locker. Say what? Yes, Lyme has played professional ping pong with her executive functioning skills. My head is spinning from her disorganization. Her head must be doing laps.

Needless to say, she is having a meltdown. She asks me why I hate her so much. Claims I'm a bad mother. I admit it, I smirk. Privately, though. She yells at me and if I don't answer within three seconds because I am responding to an important email on my computer, she gets angry at me, thinks I'm ignoring her and decides not to answer me when I speak to her.

My son is chilling on my bed and asking if I am angry with him. He's recovering from IVIG and has a cold on top of that (OCD = going through tissues boxes.) No, I'm not angry with him, I say. He asks me if I am angry with his sister. Yes, I say. Do you love her still? he asks. Yes, I love her, I answer. This is a typical 14 year old boy when he's not sick. Are you angry with me? he asks again. And again. And again. And then, suddenly, I feel ANGER coursing through me and and I want shout "Shut the -- up! Dammit! I'm NOT angry with you!" Although by now, I am angry and I need to make space from my boy whose cold goes to his brain.

"Mommy, you should stop working. You work too hard," my son argues as I tap away on my computer, trying to get more publicity for the Lyme Disease Challenge and very happy to ignore my daughter's rants. I'm not feeling guilty for being on the computer now; I had quality time with the kids today. I made time to read my book (but that's another story.) I'm on vacation and in the past 24 hours alone, I helped cook dinner, lay down with my son at midnight when he said he felt nausea even though I was falling asleep, fried up gluten-free chocolate chip pancakes for the kids (including the husband,) and took the kids to the park, which was about 40 degrees but sunny.

Is "working on" the Lyme Disease Challenge work? Heck, it's PLAY compared to real life. Truly, I can lie down on my bed and monitor the websites and mail, post, and send out press releases from the privacy of my bedroom with music in the background. I can stretch my Lyme-infected back and message friends simultaneously. I can check on www.facebook.com/panslife and update articles. Computer = lightweight compared to all the stuff that goes on at home.

And quite frankly, I only have so many spoons because Lyme fatigues me (you've read about the Spoon Theory, yes?) So working on the LDC and PANSlife gives me a chance to REST before doing something more active, unless I'm having to stress my brain a great deal, in which case I need to read to relax.

Back to my son. He mumbles to my daughter to do something for the woman who has enslaved her (moi.) Even in the midst of a flare, he keeps some semblance of a sense of humor. I sneer. He smiles but barely.

My daughter comes in and apologizes. "I apologize for my behavior." Yes, the line is right out of The Giver. I accept it and she hugs me. Just another day on the home front.

Saturday
Mar142015

I Don't Want to Live

"I want to die. I should just be dead."

Just the words to freeze a parent's heart. Just the words many parents of kids who have PANS/PANDAS hear at some point. Again and again.

"PANDAS is over-diagnosed." So speak pediatricians, even in 2015. Hopefully, that will change. The PANDAS conference at Brown University this weekend may help to educate today's doctors. If they go to it. Even so, PANDAS is being rolled out in very strict scientific terms. You must have seen a sudden onset, state guidelines. Other researchers, like Dr. Rosario Trifiletti, will tell you that PANDAS can look very differently, depending upon the age of the child, which, as parents in the trenches, we know to be true. 

My daughter had a sore throat this week. My husband took her to our nearby pediatrician who refused--absolutely refused--to test her for strep because the antibiotics that she's on for Lyme Disease should protect her. My daughter is not my PANDAS kid, so perhaps, in this case the pediatrician was correct. But then, again, I've heard of kids with PANDAS getting strep despite being on prophylactic antibiotics! And now my son has caught the "virus" that my daughter picked up.

Whom do I trust, other than our PANDAS and Lyme doctors, who are swamped with patients? Parents have nowhere to go in an emergency. I'm writing about demon eyes, destruction and death wishes. 

There was a time when I thought death would have been kinder than these diseases. When I wondered if cancer would have been easier to handle. When I wondered if my child would make it to adulthood. There are days when I don't fear death anymore for myself--except for the fact that it will take me away from my children who love me and need me. Heck, whatever comes after this life can't be all that bad!

Before we knew our son had PANDAS, when he was in the last few days of being 8 years old, he grabbed a knife, feeling the need to hurt himself. We subsequently hid all the knives and scissors in the house. 

Now, he's diagnosed, he's being treated, he has come a long way. From being homebound tutored for 18 months, he returned to full time middle school and earned high grades. But all it takes is a whopping virus. All it takes is a bad Herxheimer's reaction. All it takes is some unknown bacteria and brain inflammation. And we're right back where we started from, but with an older, larger child.

He's sick and scared that he'll be self-destructive. Last night, he fell asleep in our bed, in the middle. Two is company and three is a crowd; he's getting taller (still skinny), which means it's not much of a sleep-filled night for us when he's there, but at least he's guarded.

The OCD messages are strong. I've tried urging him to tell the PANDAS to get OUT of his head. But he thinks it's himself. What works? Not a whole lot right now.

All I can do is count the days of the flare, give supplements, an epsom salt bath if I can get him into one, and hope. A couple of years ago, this was our life daily, for months--even a couple of years straight. In the last year, he's shown so much recovery. 

But when his brain is attacked like this, when he "acts out", and then slaps himself repeatedly in retribution and remorse, I can't help but feel like crying. I can't cry--my son needs me to calm him. My daughter needs me to act like I can handle it all. It's when I get in the car and drive perhaps to the pharmacy, that I stop in the parking lot and let the tears roll for three minutes before I pull it together and get what I came for. My husband says we have to expect this (do we? Why can't he just totally recover?!) My daughter stares at me with tears running down her cheeks, then says, upon being questioned the next day, "I'm used to it. I'm OK. No one else really understands what a bad life we had." But when her brother leers at her--no, this is not his sweet, everyday, "normal" personality--and tries to hurt her feelings, she finally yells back. 

"I'm a bad person," he says then, to me. "I don't deserve to live."

The scenario I'm describing is not an isolated event or person. In a recent discussion between Dr. Dennis Cameron (LLMD) and Dr. Madeleine Cunningham (Moleculera Labs,) Dr. Cunningham stated that someday, we will have scientific evidence that much of what we have believed is psychiatric is actually inflammatory conditions resulting in symptoms. 

My husband and I spoke tonight about contingency plans--IF our child is beyond us, if he is self-destructive and we can no longer control him, if we need health care, we should plan ahead so that we take our child to a safe place. We want him receiving medical care, not psychiatric drugs. We want his blood levels tested, perhaps IVIG if needed. We want to remain with him while he is distraught because his brain is on fire. We don't want him abused by "professionals" or taken away from us by the State; that is a great and realistic fear. Think: Elizabeth Wray, Justina Pelletier. 

I hope the Brown University conference makes great inroads. But even if hospitals begin recognizing PANDAS/PANS and treating it, most still will not acknowledge chronic Lyme Disease, Bartonella and Babesia, all of which can cause rage, paranoia, depression, bipolar-type symptoms and more.

He's missing school. He cannot think. We are about to find out how strong our IEP is. So far, he's had a very good year--he's a smart kid, a hard worker. He likes his teachers. His school has been supportive. Now we'll see how far that support goes.

I wish he would be healed and could put all his fierce determination into his goals, and not be waylaid by a ridiculous disease that distorts the way he thinks. But that's far in the future, a future I cannot even begin to imagine right now. We just have to get through tonight. 

Wednesday
Feb182015

Why Do Bad Things Happen to Good Kids?

Why do bad things happen? And why to children? My boy is getting older and when he's migraine-y (that should be a word) as he was a few weeks ago and unable to hang out with friends, go to school, be a "regular" guy, he starts questioning religion and life: What is the purpose of us being here when life is so filled with negativity? Mom, do you believe in G-d, because I don't. Don't you think life is hard? What if I'm paying now because I'm going to be a bad guy later in life?

Oh, gee whiz--and my thoughts go instantly to all those "bad" guys who people say could have had PANDAS and Lyme. Bad thoughts, bad; go away! This is my little boy we're talking about and he has a conscience and a half.

A conscience that would make him take himself out if his thoughts ever got too bad, a conscience that makes him want to be either a police officer, a scientist, a doctor or an investment banker (well, no conscience there, perhaps) when he's feeling good. 

But really! What is wrong with this world that a little, innocent boy needs to wonder why he's paying for something so monstrous? The child has been sick for over five years already. Sure, he's shown improvement. He's back in school after being homebound for 18 months. He's earning high grades. But it all comes at a price--and that take-a-breath apprehension of wondering what's around the next corner? That next corner could be Saturday. Or next year. Or in three years. Or tonight at 1:09 AM. 

On a support group site recently, a mom wrote about that tale, "Welcome to Holland." For those of you who don't know, it's a parable about a parent planning to a trip to Italy, but the person ends up going to Holland instead and needs to change expectations. In other words, our kids are not always exactly what we expect, especially if there are some disabilities involved. Well, the parent on this support group wanted to know what you do when instead of "Welcome to Holland," the story line reads, "Welcome to North Korea." I can't give her credit here because support groups are anonymous, but I totally get it. Yes, I do.

When I was in my twenties and going through a rough patch, I read, "When Bad Things Happen to Good People". Perhaps it's time to read it again. All I recall is that the book gave me some level of comfort. And while life at the time was rough for me, it did get better. Because I worked my butt off to make it better. I made some big decisions, I made some changes, and I was able to take control of my life.

You can't always do that when confronted by a disease. DISEASE is a formidable challenge. It's not like a life decision that I can take responsibility for. It's not like a life direction that I can alter. I can't leap over this obstacle or veer into a different direction. I have to head straight through--deal with the dirt, the slime, the gruesome--there's no turning back. No re-do's. Because it comes from the outside. We didn't ask for it, but heck, plenty of adversity is all around us. People don't ask for bad things to happen.

So the conclusion is that the world is not kind. It's not a game. It's not all trips to the beach, white picket fences, romantic dinners or long bicycle rides, although these are the events that make it liveable. "The World is a Vampire," sings The Smashing Pumpkins. It's out to get you. If you let it. 

The last book I need to re-read is Viktor Frankl's book, Man's Search for Meaning, a book my mom gave me many eons ago. A book that might just have more significance now. Maybe I still have it in my book shelves. Maybe I need to acquire a new copy. I definitely need to begin living by it, and I need to teach my son to do the same.

“When we are no longer able to change a situation, we are challenged to change ourselves.” 
― Viktor E. FranklMan's Search for Meaning

 

“Everything can be taken from a man but one thing: the last of the human freedoms—to choose one’s attitude in any given set of circumstances, to choose one’s own way.” 
― Viktor E. FranklMan's Search for Meaning
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