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

 

 

 

Saturday
Apr092016

Parallel Worlds: College time

I have a good friend whose main concern right now is determining the college her daughter will attend. Will College "A" give her the education she needs in order to acquire a job when she gets out? Will College "B" provide her with enough financial support? Will she enjoy living at College "C"? And then, of course, there's that overriding question--will she be accepted by these schools? If she's accepted by all of them, how will she make the choice? If College "A" offers her $20,000, can they bargain with Collegee "B" to give the same grant? Will she end up owing more money than she can make in 20 years of working? Will her parents, my friends, foot the bill? And if so, when will they be able to retire?

Meanwhile, I'm attempting to determine the best medical treatment plan for my teenager. Do we try IV antibiotics? If so, can my child get off of them by summertime so that he can swim at the beach? What are the complications of using a port vs. a PICC line? Who will insert it and will insurance cover this? Will the new neurologist we just saw ($$$) prescribe IVIG? Or will he require yet more tests? Are my son's immune scores rising or falling? 

For my friends, as for anyone, having a child accepted into college is significant. Their child has lettered in sports, played a musical instrument, received high grades. This child is healthy and has never experienced anything severely medical. That's normal, right? But this college experience is a first and it's tension-inducing and my friends have a right to vent. It's just a good thing that people cannot always read my mind.

My child, on the other hand, is sick. He has not been able to run with the football team for years, to join track this year or the soccer team. My brilliant child has trouble thinking because of brain fog from Lyme. He can't even attend school. 

If your child is ill, what do you say when you attend a party and someone asks you, "Does your child participate in sports? How does your child enjoy school?"

This is small-talk--conversation bent on forming connections between parents emerging from separate worlds who have nothing other than a child in common.

Do you answer with, "My child is horribly ill, has been hospitalized because of Lyme Disease--do you know that it can be transmitted congenitally, even sexually? Yes, that is shocking, isn't it? It's a spirochete, much like syphilis is...."

Ahh, such perfect dinner party conversation.

Or, "My child has PANDAS. Let me spell that our for you. P for.... And she's flaring. She's so immune compromised right now that she's on her third cold in a month and that results in increased tics and OCD and major separation anxiety...in fact, I was lucky to get out tonight. Yes, she's 18. And usually, I have no life." 

Way to pick up the party, yeah!

No, we can't share much. So we listen. And hear about the successes that normal kids enjoy. The colleges visited, the application process, the guidance counselors who show support. We don't mention the multitude of doctors and therapists and the hundreds of tests that our children must take (because they're blood tests.)

The question remains...what about our children's dreams? I cannot yet imagine my child leaving for college. He doesnt' even know what pills he takes, nor is he interested. When he's ill, he has difficulty managing stress. If he stays on a pass/fail system in high school, he won't be able to apply to a regular college but will be forced to attend a community college first. Which isn't a bad idea, as it would give him more freedom to grow, to treat, to improve and to live at home. 

Admittedly, when I was applying for colleges many years ago, the state school was my back-up. Community colleges weren't even in the picture. I applied early decision to a good school and stayed there until my parents' divorce forced me to a less expensive school. And guess what? The state school was stellar.

Snobbery will get me nowhere when it comes to my kids' educations. We will need to re-assess their dreams and needs as we progress. I'm not alone in this. For every friend whose kids are looking to leave home for college, I have yet another friend who has a child unable to attend at this time because of a medical disease. We want our children to have successful futures and happiness, as well as a fun job with health insurance someday. 

Fact: There are more good colleges and universities than there are good PANDAS/PANS and Lyme doctors.

Fact: It's as difficult to acquire an initial appointment with good PANDAS and Lyme doctors as it is to get accepted to a good university. Maybe even harder. 

Fact: It can be more challenging to find a treatment plan that works than it is to declare a major.

Fact: There's probably more financial aid for schools than there is for medical needs.

Fact: I can't brag about my son and our medical challenges the way my friends can brag about their kids. 

Fact: I must listen to friends as they stress about healthy, normal life events. Because if I can't listen, I won't be reciprocating. And they won't want me as a friend anymore. I like these friends. I want to be there for them. But I can't help comparing the enviable place their child is in with the unenviable place mine is in.

Fact: There are thousands of parents and children whose first priority is to deal with medical illnesses and for whom college will not be as integral in the near future.

Fact: My child might not go to college. Whereas he once wanted to be a scientist, school has become a breeding ground for anxiety and brain foggy-perceived failures (he's actually doing OK.) He has it set into his mind that if he cannot graduate in four years with his peers, that he will drop out of school. He has also determined that his band will become famous and successful and so he won't need college. I tell him he needs at least a business degree because too many musicians lose money to their managers. But he's a teenager, albeit an unhealthy one. He doesn't want to listen to Mama.

Fact: We have no money saved up for our children's colleges. All of our money has gone to treating the medical issues which plague each member of our family. There's a lot of love in our family but that doesn't pay the bills. 

Fact: My children would probably fare better when applying to college if they keep a blog or write a book about their experiences with Lyme Disease but they're Lyme'd out and want nothing to do with it. They won't write music about Lyme either, at this time. Teenagers.

So, our parallel lives continue. Our hidden one of dealing daily with medical woe is no less as stress-filled as the ones that are typical. Imagine. I once thought my parents' divorce and my subsequent transferring of schools was the worst ordeal ever. At 19, I had no idea what it would be like to have a sick child. But the ordeals of long ago have given me the strength to deal with the challenges today. I know that whatever the future brings, I'll have friends there to tell me that I'm not alone. Especially when I'm still working to pay off the loans we took out to cover our medical costs!

Thursday
Mar312016

New Research Propagates Lyme Myth

Yet another media source has published the latest Lyme story with the headline: "Long-term antibiotic treatments don't work on Lyme Disease." It's a media hay day, but for Lyme sufferers, it's a media hell-day.

According to this new story, researchers in The Netherlands tested a total of 281 subjects suffering from chronic Lyme Disease by giving antibiotics for up to 14 weeks. You can see the published medical study here. This article, and hundreds more like it, state that the subjects, all of whom had been diagnosed with Lyme, did not report improvement after the initial two week period. The researchers therefore concluded that extended periods of antibiotics do not provide any more benefit than a short-term dose of antibiotics.

Logic like this will lead you to buy the nearest decrepit bridge.

Here are some of my issues with this:

1) Were any of these 281 patients tested for co-infections? According to Dr. Daniel Cameron, it is very rare for people to only have Borrelia. If co-infections aren't treated, Borrelia can not be effectively fought. Co-infections are the norm. See here for his blog. Dr. Cameron also states that, "Typically, clinicians do not test for co-infections when Lyme disease is suspected." According to Dr. Richard Horowitz, "The existence of these co-infections — so-called because they are often transmitted along with Lyme disease — explain why some people with Lyme remain chronically ill even after treatment: while the Lyme is identified and treated, these other infections are not. In addition, testing for co-infections is often unreliable, as it is for Lyme disease, so co-infections often go undiagnosed."

2) Lyme morphs. Dr. Eva Sapi has made a name for herself while helping countless others with her discovery of biofilms and cysts (round bodies) and herbals such as Samento and Banderol that can help to dissolve these thin layers so that the Borrelia can be killed.

3) Twelve weeks? Really? Many of these patients had been sick for years already. Lyme pervades the organs, the joints, the hide-away places and it takes more than a quick fix to eradicate it. I've never heard of someone with chronic Lyme who was cured within 12 weeks.

4) Three antibiotics? Most Lyme Literate doctors are switching up the antibiotics. Recently, researchers have discovered that pulsing antibiotics helps to fight what they have termed Persister Cells

5) Persister Cells: Check out this research. Maybe this can explain why this population wasn't cured in twelve weeks. According to a Scientific American article, persister cells "are bacteria that have gone into a dormant state, ceasing the types of cellular activities that antibiotics typically thwart. Previous research has shown that when persisters of other bacterial species are removed from a bath of antibiotics, they begin to grow again."

6) ILADS has published a list of over 700 peer-reviewed studies that show evidence of chronic Lyme. See the list here.

7) Politics and financial trails. Why is this study coming out now? The National Clearning House has just eliminated IDSA's guidelines for treating Lyme Disease. The verbal and legal sparring between ILADS and IDSA continues as researchers find more evidence that Lyme Disease is the fastest growing infectious disease and cannot be easily cured when not immediately caught. For more on the IDSA vs. ILADS debate, read this article

What does this mean for Lyme sufferers and doctors who treat Lyme?

The fight for awareness continues. I live in a Lyme-endemic area yet there are doctors in my vicinity who know very little about treating Lyme Disease. In fact, one recent doctor, upon hearing me talk of a Herxheimer's Reaction, looked on in horror as she announced, "But that's an anaphylactic reaction." Oops. 

Those of us with children are wary of telling nurses and doctors that our kids are on long-term antibiotics for Lyme. After years, we have found medical practitioners who are knowledgeable and trustworthy enough to treat us. But even these doctors are endangered by policies that would make it inconceivable to give more than a two-week supply of antibiotics. Furthermore, insurance doesn't unilaterally cover all costs.

A recent Boston Globe editorial attempted to discredit a legal movement to get insurers in Massachusetts to cover expenses attributed to chronic Lyme Disease. The opinion-based piece argues that "the proposed mandate isn’t backed up by existing science." Right back at you. Check out over 700 pieces of evidence.

And don't tell my children that our country is so far behind that we don't recognize Lyme Disease when the evidence--double-blind, placebo-controlled studies--exists. There's a reason that Lyme Disease is called the new AIDS. How many more years will it take until the science, the treatments and the medical community unite to actually cure people inflicted with Lyme? 

Monday
Jan112016

The top 25 Benefits to Dealing with Lyme

Having Lyme and co-infections in the family can be a real downer, but if I dig deeply enough, even I can find some 25 silver linings to contending with disease. Ready for this? Here goes!

25. I am so much smarter! I can now name about a dozen different antibiotics, at least, plus other medications. I know how to split pills. I know not to give doxycycline with dairy. I know you must take mepron with a fat. Just call me a home pharmacist. That sounds so wrong, but every one of the medications in my house is legal.

24. I know how to detox. Lemon water, pinella, burber, parsley drops, epsom salt baths, glutathione, etcetera. 

23. I know more than most doctors about deciphering a Lyme Western Blot test. Yep. I know that many infectious disease doctors and pediatricians tell people they don't have Lyme, even when the test is positive. I know that many Lyme tests are falsely negative. 

22. A know what a Herxheimer's reaction is. And I've read up on Jarisch Herxheimer.

21. I know what a spirochete is. And I do not have syphilis. I know that the Lyme spirochete can morph.

20. I have a zillion friends across the world who are available at all times of the day. And night. Because Lymies often have trouble sleeping. And then, there are folks in completely other time zones in the support groups. For the most part, we all stick together and pull each other up. The worldwide web is a great invention.

19. I'm smarter than a fifth grader. Now, my 5th graders are pretty intelligent and catch me when I make mistakes (I reward them when they do) but I have to say that I've had quite a self-education in the last few years when it comes to getting my home-brewed medical degree.

18. I've learned to question big business and Pharmaceutical firms. And to think I once dated a scientist for a pharmaceutical firm! This was way before I met my husband. It was pretty funny. We went out to dinner with my brother and his new girlfriend who was a big environmentalist and she chided my date on experimenting with mice and cells. She and my brother eventually broke up and she became one of my bestest friends in all the world! At any rate, where I once trusted pharmaceutical companies, I now know that they control so many of the medical decisions and laws. But they're financially driven.

17. I know more than many doctors. Ask me about PANDAS/PANS or Lyme. Do it, Doctor. Because I've been studying these diseases for the last few years. Don't tell me that PANDAS is a myth. Don't tell me that Lyme is cured with two weeks of antibiotics. These fallacies are increasing the duration of the illnesses.

16. I know that I can never donate blood. My blood contains babesia and borrelia. The nation's blood supply is not screened for these tickborne diseases. I would not like to have to accept blood from a blood bank at this time. I don't want to give anyone else Lyme; I already passed it to my kids. Knowledge is power.

15. I know enough to tell a hospital to not give Tylenol because it's a glutathione blocker and someone with an autoimmune disease needs glutathione!

14. We're some of the cool ones who have done genetic testing. 23andMe, Courtagen, and more.

13. I appreciate symptom-free  days. My hip didn't hurt! I didn't feel dizzy! I didn't have to lie down! My nose didn't twitch! My son was happy all day! Wow! Yippee!

12. I am ever grateful to the great doctors I've found for myself and my family. There are truly special out-of-the-box thinkers and doers in the world who care more about helping people than they do about fitting in to the system.

11. In the last five years, I've read more scientific studies and articles than I did in twenty years of schooling.

10. Friends of mine and I speak a univeral language: pandassy, herxing, detoxing, running out of spoons, bart, babs, DS, DD, DH (dear son, dear daughter, dear husband,) ABX, IgG, IgM, ASO, dNase, LLMD, MTHFR, methylation, biofilms, neurotransmitters, essential oils, activated charcoal, etc.)

9. I can help bring change to our world; I can inspire others, I have the opportunity to educate on a larger platform. We have had a great start with the Lyme Disease Challenge.

8. I know other risk takers and change makers; I recognize strength in people who contend with medical conditions that would weaken their bodies.

7. We are writing history and "Her" stories with our blood and tears and blogs.

6. I have a meaning in life other than my family and work and art (writing/singing.)

5. I have learned how to practice hope and how to look for all the positives in my life.

4. I have learned to live in the moment.

3. I know that when I love, I love with all my heart and will do anything to help the people I care about.

2. I no longer fear my own death because life is pretty difficult, but I know that my children have a great need of me--and will always, as we still need my inlaws, father, godmother, family and friends.

1. I measure success far differently than ever before. Success is pushing oneself to go to school for an hour, walking out the front door to the end of the street, wearing a smile and getting through the day without anyone knowing how sick or sad i feel. Success is seeing my child come back from losing math facts to being tops in math again. Success doesn't mean going to the best colleges or having the biggest house or the fattest paycheck. Success is still having a partnership with my children's dad when marriage seems to be the last thing we think about. Success can mean a family dinner where everyone is laughing and cheerful. Success can be that feeling of contentment that I've done all I can for the day as I curl up with a good book. Success is coming up with 25 benefits of dealing with Lyme Disease. Can you think of more?

 

Thursday
Jan072016

When Life Invades Art

I'm conducting poetry workshops with my fifth grade students. We read poems, feel them, breathe them, write in the style of them or write wherever the inspiration leads. I often create alongside my students. This poem was written in the style of the Carl Sandburg poem 'Who Am I?'. I often find my teaching work to be nearly meditative; my home life and my own fight with Lyme don't enter the classroom while the students are there. But sometimes, life invades art.

Kindly do not reprint without permission.

 

Who Am I?

 

I am the hissing wisp of smoke

that slithers into your nostrils while

you sleep;

I am the jabbering, pulsating trepidation

that shrieks whitely with no

sound at night, jaws cracking.

I hunger for your life.

 

I deform the expectations and dreams of multitudes

as I smother the exuberance of youth.

I stand with barbed boot on your heart with

another spike in your neck

hunting each minute

by seeping minute

withering away the fresh apple of your brain.

 

I cannot and will not be contained.

I am Disease.

 

L. K. 2016

 

Wednesday
Dec232015

World's Best Liar

image

Just call me Secret Agent Double 0 PANDAS Mama. I lurk in dark hallways, listening to breathing; I search for sharp objects capable of making cuts so I can confiscate them; I wake at the creak of a door.

I have laundry baskets filled with clean laundry piled up in my room because I haven't the time or energy to put all away yet. I have bills piled up in several areas in the house. Yet when I walk out the door, I am neatly dressed and I look ready to take on the world. Haha. Fooled you all.

I am the world's greatest liar. When someone asks how I am, I say, 'great'. I say, 'fine'.

I say, 'OK' when I'm in despair or physical pain. Those are the days that I wish I could keep my dark sunglasses on. Those are the days that when I'm in the car alone, the tears creep into my eyes. I guess I could answer with 'Horrendous,' but really, who wants to know the truth? There's nothing anyone (aside from a doctor) can do. The world is divided into A) Parents and Kids Who Suffer from Medical Disabilities--and this includes those referred to as Psychiatric) and their Medical Providers and... B) Everyone else. So I say, 'OK'. Never have I had someone say to me, "Cut the BS and tell me what's really going on, Lisa."

I am the world's greatest liar. I make lists of everything for which I am grateful and make myself believe in ONLY that for a few moments, blocking everything else out of my mind. I can fool myself for hours at a time. Yay me. Must be the acting I once did. From Marian the Librarian to Queen of the Night to...drum roll, please...tada!...PANDAS Mama!

I am the world's greatest liar. You see, I know that when I have wrinkled hands, my child will be grown up and better. Maybe not 100% better, but I'll settle for 80% at this point. I know he will be better because that's the irony of life. I'll give up all of mine now so that he will be ok. I won't stop until he is better, and that's no lie.

I am the world's greatest liar. I tell myself I'll retire someday and live in a warmer climate, that I'll miraculously have more money. I'll have time and energy to do the things I'm putting on hold now because of my children's diseases and my own (and the fact that 200% of our resources go to treatments): bicycling tours, nights out, vacations, excursions to other places, singing. 

I am the world's greatest liar because much of the time I just want to curl up on my bed and get lost in a good book. Leave me alone, world. Let me escape. I think that's what I want. But the truth is that when I'm with a good friend, I feel like myself again. And although I seem to myself to be much more introverted now, I do love my good friends. I don't like large parties. Being with large groups of people tires me out. Maybe my personality has changed. Maybe I've lost the last few remnants of humor and creativity. Am I the same person who once sang, "Shall We Dance?" to a two year old and soared with him around the room while he laughed? I don't want to dance anymore. No, that's not true. But my hip hurts all the time.

I'm the world's greatest liar because I tell myself I probably can't truly sing well anymore anyway. I'm sure I can no longer hit the high E (not that one needs to very often.) But I haven't tried. I haven't the time or the energy. And I'm not old, although I'm too old to play Mary Poppins as I'd always dreamed of doing. I made my choice--to have a family and teach and to not attempt a career in music. I should be happy, right? I have two beautiful kids and a loving, funny, dedicated husband. Too bad they're all sick. "Two paths diverged" and all that. I certainly took the road less traveled! (Robert Frost.) The Lyme Road.

I am the world's best liar because I haven't the foggiest notion of how to cut through my brain fog and complete the novel I started years ago. Yet I still tell myself I'm a writer and that I will be published--in hard cover, no less. Never mind that words don't come as easily to me as they once did.

I am the world's greatest liar when I open a bottle of red wine and tell myself I will have one cup each night, and then forget about the last three cups until either my husband uses the rest to cook with or the wine becomes bitter. I'm truthful in that I'll never be an alcoholic. No James Bond dry martinis for me. But bring me chocolate and watch it disappear. Except now. I'm dairy-free. Bummer for me, right?

I am the world's greatest liar when I think that we will have 7 years of bad luck with the Lyme and PANDAS before having 7 years of good again. It's been six years now, so that means just one more bad year, right? Might there be something biblical about this suffering? And althought I don't believe in G-d (much,) I pray when times are very bad. I certainly don't believe any G-d would cause this, but I have wondered if maybe I was Christopher Columbus or a Nazi henchman in a past life; what did I do to deserve this? What did my child do to deserve this?

"Mommy do you vow I'll get better?" he asks me sometimes. He calls me "Mommy" when he's not feeling well. I wish he would call me "Mommy" instead of "Mom" when he's feeling fine/confident/healthy.

"I vow that you'll be better," I say, looking him straight in the eye. I might be the world's greatest liar but I really don't know all the body language or how to cover up a lie; I have no poker face. But this is not a lie; I will do everything in my power to make sure my baby is better. 

He says, "If I'm not better, you'll give me one million dollars!"
"Hey," I tell him. "I'm spending one million dollars getting you better!"

OK. That is a lie. Although, considering that my husband now works sporadically so that someone is here for our son, and considering how much we have spent and gotten into debt over...you do the counting. I'll stick my head in the sand until we can breathe and maybe then I'll assess the financial damage.

I tell myself that all will work out in the end (or it's not the end.) If I have to lie to my child to keep him alive in the meantime, I will believe that lie first. And then work my butt off to make it become a truth. 

I am the world's best liar because I constantly tell myself that everything I have is enough, when it isn't! I abhor having a house that is slowly falling apart. I loathe having to cancel plans at the last moment because a child is flaring. I despise never having a date with my husband. I hate hate hate not being able to sing/dance/travel like I used to, and to do so with my kids. I want to show them the world, not the inside of a malfunctioning brain!

Yes, I can feel gratitude for the fact that we have a house and that we have kind neighbors, that we can stay home and rent a movie or escape into a book. I am grateful that I have a secure job that I love, a career that offers me a happy place and a chance to make a difference in this world. I am fortunate in that the children I teach have no conceivable idea that my family is so ill. I go to school and I smile. No one ever knows what happened last night. I am a double agent; my world at home is a secret.

I am the world's best liar when I tell my child, "This pill will work," hoping for the placebo effect, if not the real effect, to make a difference. But then the Herxheimer's reaction--all that bacteria die-off which exacerbates symptoms--kind of complicates that and shows me up. 

I am the world's greatest liar because I tell myself that there must be some meaning to all this suffering. I tell myself that I'm meant to do something with this--not dwell alone in my misery, but to teach others, help others past the hurdles we've been through, guide others through the shortcuts (have you tested yet via Igenex?!) and perhaps change someone else's life as I haven't completely done with our own. Yet.

I am the world's best liar, or perhaps the world's greatest dreamer, when I believe that in twenty, thirty, forty years time, there will be cures for Lyme, Bartonella, Babesia, and for PANDAS/PANS, so that someday, our children and parents no longer need to suffer like this. I believe that change is inevitable, that our parent movement will propel this forward, that the world will begin to listen. 

It's tiring to live the double-life. Secret Agent Double O PANDAS Mama needs a lot of rest and destressing time to be able to cope with the darkest travesties of the job. The training has been intense. But we secret agents will prevail, and someday, will retire to a happy, sunny beach. Maybe that's a lie also.

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