To the Doctor Who Just Doesn't Get It

Hi Doctor, I have a bacterial condition. It's caused some varied symptoms and I think it might be causing my dizziness but I'm not sure. I want to make sure I don't have an ear infection and am thinking it's yet another symptom of the bacteria.

Yeah, I'm seeing a couple of doctors for it. I've been on antibiotics and since I have difficulty with them (notice my listed allergies,) I've been advised to try some alternative, herbal supplements. I'm actually much better than I was a few months ago.

Who is my doctor? He's in Connecticut.... (Do I want to mention their names and perhaps endanger them?)

The bacteria? Oh, I'm sure it was spread by an insect. 

Symptoms? Well, for me, I get brain foggy and very lethargic. Like, I don't want to get outa bed lethargic. Sometimes I get electric zaps in my legs. Lately, I've been getting headaches. Sinus-type headaches or headaches that make me feel like I've worn my hair in a ponytail for far too long. If I just move my hair, my head hurts. That's been a little better lately (since decreasing the Byron White A-L, I think.)

No, I never used to get headaches. I wondered if I had a sinus infection a couple of times and then they went away. My doctor said he's seen that with the bacteria. I do have allergies also.

I'm absolutely not depressed. In fact, I can't wait to go home and go on a long bicycle ride with my family. Thank you, but no, I don't require an antidepressant. Yes, sometimes I'm very anxious but it's a symptom.

How do I know anxiety is a symptom? Well, if I'm super-stressed, I have an increase in all my symptoms. And if I start a new medication that kills the bacteria, sometimes, totally out-of-the-blue when there's no possible reason for me to feel anxious, my heart will start pounding away and I'll feel super stressed.  

Yep, my doctors have said that the die-off of the bacteria can cause symptoms. 

Well, that's what they say and that's been my experience. (And the experience of 1000s of others, I say in my head.)

Am I anxious now? Not anymore so than the typical person who can't find a cause or a way to alleviate symptoms of a disease.

So, I don't have an inner ear infection? Well, that's really good news to hear after 3 hours of testing.

Do you have any idea why my nose has been twitching for months? 

Nah, it's not cute anymore. In college, a long time ago. It was a party trick; look at me, I'm a bunny rabbit. I'm Bewitched. I guess it's cute if I wanted to do it but it does it on its own and it's really annoying. (And I'm a little old for cute.)

You think I should go to a physical therapist for my neck? Oh, but you see, it's always a little tender and I've just been doing a lot of bicycle riding this week for the first time since winter ended, and I have scoliosis.

It's possible...I could ask my chiropractor if he thinks the dizziness is related to my neck.

Oh...you don't believe in chiropractors? You think they can make things worse? Oh, that's not good. I've been going to chiropractors for half my life and they've done amazing things to help me.

The name of the bacteria that's affecting me? Your really want to know it? The CDC doesn't even want to know it.

OK, I'll tell you.

No, it doesn't go away with 3 months of doxycycline. That's a myth that's perpetuated by the CDC and the Infectious Disease Society. 

Well, a short burst of antibiotics can work for some lucky people who catch the tick bite immediately, but, in real life, for most people, this doesn't ever go away.

You see, not everyone gets a bull's-eye or knows that it's there. I know I was bitten on my head. With all this hair, I'd never have seen a bull's eye.

I'm just trying to be as healthy as possible. If I can keep my immune system really strong, I'll be OK in the long run because I don't have a terrible case of it. But I have friends who have it much worse. My own son has joint pain and vision issues from this.

When did I get it? I really have no idea. Perhaps as a kid playing in the woods. I've always had dogs; dogs pick up insects, carry them around. I might have given it to my kids--I don't know. Yes, there are some studies that show that this bacteria can be passed through the placenta.

I know you don't know about that. Scientists have sat on these studies rather than make them public. Let me show you a local study.

You really don't know much about this bacterial disease? That's a shame. Your shame, to be quite forward.

You are a doctor, right? Does learning anything beyond your specialty interest you? Have you misplaced that goal of wanting to save the world? Is doctoring simply a... JOB to you now?

Do you realize how many people you might be sending away who have the same thing I do? Why don't you know more about this than I do? Why won't you listen to me? 

You won't listen to me, will you? Not until someone in your own family gets this, and even then....

Oh, how I wish I'd had the gumption to say those last lines. 

Life's Good, Today

Can I shout, "Wow!"? Or will I jinx everything?

Today, at this moment (and yesterday, and yesterday before that,) my son is in a better place than we have been in for years.

Today, we had a CSE meeting to plan for his re-entry into school, as he's been homebound for a year and a half. My son, now 13, was in the meeting and involved with the planning.

The school offered to shift his schedule around so that he can return for a special (as recommended by doctor and by our advocate, separately,) and then hang around for PE so he can take the bus back home after. As he gets accustomed to school life, we will switch him into an academic class. 

On top of all this, our insurance company has approved IVIG for him and we need to schedule that. 

And, this kid is totally motivated for his bar Mitzvah, practicing every second he gets, singing for me continuously. 

Read our story. We have been through so much grief and despair. I never thought we'd be here.

What resulted in this success?

Who knows? A combination of: IVIGs, fighting the Lyme and co-infections with antibiotics, herbals, etc., a restrictive diet, anti-inflammatories, antivirals, pulling my son out of school to minimize infections so he could begin to heal, brilliant doctors who understand PANDAS and Lyme.

Tomorrow, you might find me belly-punched and crying. I know how all of this can simply disappear overnight. I have friends whose children improved and then sharply declined. I am aware that puberty can have a negative affect on the healing. 

Or maybe not. Maybe puberty can bring with it positive changes.

I think my son is at a better place cognitively than ever before. We have a baseline. We will always strive to get back here.

Is he symptom-free? Hell no. Tics, OCD are constant companions. He has some joint pain, sleep issues occasionally, etc. But no rages. No depression. I can live with this child in this condition. And he can live with himself. He's happy and excited by life again.

So, this is my message: If your child is struggling, there's hope. If you're struggling, believe. Hold onto my hand and we will pull each other along. We will get there together. 

A Strange New World

When you read about a child with a different disease, why is it so difficult to relate? When many hear about family or friends with Lyme Disease, PANDAS, autism, genetic issues, why do we suddenly fall into groups of "us" and "them"? Most people are filled with compassion, yet an invisible wall stands in the way of true understanding. Sometimes this wall fades in time, sometimes it leads to the ends of friendships and other times it leads to friends or family becoming aggravated with not the disease itself but the person who bears the illness (or the person's family.)

There was a time when, if I heard about Lyme Disease, I never thought about all those years that I spent playing in the woods. Because I learned about Lyme Disease later, I didn't think that the ticks could be bearing this bacteria when I was a child. (Oh, they were!) I saw Lyme Disease as something that a few unlucky friends were forced to endure. Going through this experience as a parent of a child with a disease, and then, as a patient myself has led me to wonder about the manner in which we classify our environment. I listened, perhaps with half an ear, but I didn't really hear. Until it hit home.

A wise educational consultant I know preaches about cognitive dissonance as an effective and necessary provocation to learning and change. Without questioning our beliefs, we stay stagnant. 

But change is so hard! When I was in my twenties, one of my good friends got married and had her first child. Suddenly, my phone calls to her were chorused by wails and baby chirpings and her murmurs of, "Just a moment." I couldn't have a decent conversation with her...not like I used to! What a pain in the butt it was that she had a freakin' baby!

Then I had my own child. I entered into that mystical world only to find myself reamed by one "friend" who quite voraciously demanded to know why I hadn't returned her phone calls ASAP. I had changed and this friend didn't like it one bit.

When I was 18 and away at college, I begged to intern at a shelter for abused women and their children. My own parents were going through a tumultuous divorce (no violence.) I was fresh out of a suburban town, very niave and extremely ambitious. Hence, I was totally in-over-my-head at the shelter. Women from all walks of life came. I remember cutting open huge blocks of government cheddar cheese there (this was before the Costcos and Sam's Clubs) and this alone startled me enough to make me detest cheddar cheese for a while.

I was terrified. We worked out of an ordinary house on an ordinary street but the husbands and boyfriends of these women were far from ordinary and I was so afraid that one would hunt us down with a gun. I had barely experienced relationships and I really couldn't relate much to these women. So I worked with their kids and helped set up a playroom. It wasn't my first experience working with a population that would make me uncomfortable. It wouldn't be the last.

Do we truly need discomfort to learn? To grow? To see the world in a more enlightened way? 

Years later, when I returned to school for the umpteenth degree, I worked in inner-city Bronx, teaching second graders. I loved the children but the environment was a shock for me. I had grown up in green, woodsy, safe suburbs. To get to this school, I had to take the #2 subway to a stop that was about 4 flights of stone-walled stairs below ground. I emerged from the subway into a dungeon and climbed out, only to enter a neighborhood seldom seen by most of the world. The teachers always left school at 3:00, with the students, because the area wasn't safe. For evening parent conferences, those of who who lived in Manhattan had to hire a car to pick us up because taxis wouldn't drive the streets at night.

The 2nd graders told stories...of guns, knife fights, drugs. They had seen too much--much more than I had. This was an entirely new world to me. Yet despite the fact that they already knew that condoms could protect people from AIDS (I did NOT ask them for this information,) they retained a childhood wonder of the world. One little boy, Nathaniel, wanted to be president of the United States some day. He was very good with math but struggled with reading. He hadn't been born here in the USA but I wasn't going to be the one to destroy that dream. 

Before working with these children, I only tangentially knew that these worlds existed. I hadn't lived it, seen it every day, breathed it. Even when I worked in the Bronx, I'd take the subway back to my Village apartment or go out for a drink with friends on the Upper East Side. But more often, I'd go home to reflect on my teaching or mostly, to worry about the children. Jason, whose mother favored his sister and whose father was in prison. Catese, whose mom worked hard to build a better life for themselves. That little boy with the huge brown eyes who missed so much school. The one who'd do something mean the moment I turned my back. Little Keisha, whose mom had died, whom I dreamed about adopting until I heard that her grandmother would formally adopt her. 

Living in this world helped me to understand it better. I was no longer a complete outsider. I had come to see the beauty in children who grew as wild roses between cracks in the sidewalks. I let myself love them. I let myself change. My compassion for children growing up in inner cities bloomed. And my admiration for people who survive these challenging environments increased with understanding.

Those of us who experience PANDAS and Lyme are catapulted into a place of cognitive dissonance. Our children are suddenly not acting like children should. Overnight, their personalities disappear. They might be suicidal...at the age of 8. We deny it at first, think that they're just going through a stage. We fear that they've been sexually assaulted. Finally, we realize that this dis-ease of the mind is not going away and we start to accept that drugs are necessary to save their lives. Some of us hospitalize our children. Doctors look backwards into the family genealogy in a hunt for mental disease (and hey, there's always some.)

Once we have come this far, and the drugs are not working, we learn to question doctors who cannot find answers, doctors who blame parents for not giving enough consequences or for being too lenient or loving, doctors who get angry because they can't figure out why the meds they prescribe don't work. Despite the naysayers who tell us to avoid the internet, we parents research the symptoms. And eventually, we find others like ourselves.

Those of us who have first-hand experiences with hard-to-diagnose diseases have pretty much fallen down rabbit-holes. We are forced to deal with conflicting beliefs such as: do most doctors really know every childhood disease that afflicts our kids?  Are vaccines good or bad? Can Lyme truly be cured with 3 weeks of doxycycline (minocycline for children?) 

No. No. No. Those of you who have not slid down the rabbit-hole probably still believe in doctors knowing so very much, still believe that the pharmaceutical industry is here to protect us, still believe that Lyme only happens to people who hike and garden in New England. You know what? It feels so good to be able to trust in doctors. So good that I kept on searching until I found doctors who are experts on PANDAS and Lyme. 

I have spent countless nights reading and reading--grappling with my ignorance, striving to understand concepts that have seemed and continue to seem beyond me. I still don't completely get methylation, parasitism (not sure we have to deal with that here--my kids are both OK on full moons, but I could be wrong,) mast cells, etc. I was a psych major, not a biology major. Learning all this is more than cognitive dissonance for me--it's cognitively overwhelming!

If I'm living in the rabbit-hole, the best way to help myself is to map it out. That's what I do. That's what all the parents with whom I'm in touch spend their time doing. 

Those of you who are above ground often deal with a different rabbit-hole, one I don't completely understand. We all have different issues with which we contend. If we're in each other's lives, it would be ever so lovely if we could share our experiences and express mutual admiration for our survival skills. If that's not possible, we must refrain from knocking each other down, from separating into "us" and "them" categories, from criticizing each other. In many ways, we are in the dark ages; there is so much that we really don't know about the brain, disease, the world. 

Try on a little cognitive dissonance today. Feel uncomfortable just a little as you learn something new. Maybe both you and the world will be better for it.

Ramblings of a Grateful Mama

"What would you think if I sang out of tune
Would you stand up and walk out on me?
Lend me your ears and I'll sing you a song
And I'll try not to sing out of key
Oh I get by with a little help from my friends
Mm I get high with a little help from my friends
Mm going to try with a little help from my friends...." (Beatles)

I'm feeling grateful and it's not even Thanksgiving. I'm singing outa key lately (figuratively. I've still got it when it comes to singing. I think.) I walk around with weird headaches in which I feel like my brains are swimming in my head, as if my head is one large snow globe. My hair hurts constantly as if I've worn my hair up in a ponytail for far too long. And my friends listen. Commiserate. What would I do without my best friends, people in and out of the PANDAS support groups? I'm very lucky.

My children's birthdays are this month. My son will be a teenager--tomorrow! His bar Mitzvah is two months away, planned for warmer weather (hey, he was born in the middle of a snowstorm.) Amazingly, for one who stresses when his dad and I organize his schoolwork, the kid is self-motivated and practicing for the big day. And I? I wonder how to tell everyone to step the back up--don't hug my kid--don't get your germsy, snivelly faces next to his. Nice, huh? But really, that will be one crazy weekend. We're letting him eat anything (i.e. gluten and dairy) so long as it's Kosher. We're letting him into the midst of a crowd. Oy. What will the following week be like? PANDASville?

Got two more exciting months to plan. Sometimes the fun is in the waiting. The writing down of songs to be played. Receiving invitation responses. Going shopping for my daughter's dress with a wonderful friend who asked for the honor of purchasing it for her.

My daughter's birthday is in three weeks. She asked for a sleep over party this year. And because my son isn't raging nightly anymore, we can do it. But then, her guest list grew to 10 girls. From PANDASville to PANICville. I teach ten year old kids all day long. I don't think I can handle a house of ten 10 and 11 year olds all night also. So, we changed the scope of the party and she's happy. Happy! Yay! I aim to please, especially when I feel that so much attention goes to the sicker child sometimes. Mama-guilt is potent. All the same, I felt the need to write on the invitations that a member of the family is immune-deficient; please contact us. In other words, if your kid has a cold, we won't be watching Pitch Perfect. We'll be experiencing Invasion of the Body Snatchers. 

I adore my kids. When I had the flu a couple of weeks ago, they both ran up and down stairs, making and carting up tea for me. I have to admit--I'm more accustomed to my daughter in that role, but my son took it upon himself as well. Karma. He's giving back. He has so incredibly much potential, I know, and I hope he recovers enough to tap into it. 

Still trying to get him another IVIG. He's so raw, so fragile, in the big wide world that's full of germs. And stress. He succumbs to stress in seconds. Some of that is the Lyme, I know, now. Because I feel it, too. I understand my kid better. But it doesn't mean he gets a free ticket. He's going to have to handle that little bit of extra stress and just keep going. 

We begin homeopathy for my daughter this month. I am now nervous about any medication/remedy as I've personally experienced herxing. Still, to NOT treat active Lyme is worse. Family members have questioned me about Lyme, not yet understanding that neglected Lyme can spiral out of control (pun intended--spiral--spirochete--get it?) and cause heart disease and a lot more. 

On a not-so-funny note, when I was recovering from the flu and had a determined barking cough, I took cough medicine, then the hottest epsom salt/bubble bath ever. It was the first "Calgon, take me away bath" I've ever had (usually I'm bored in the bath and wishing for a hot shower.) I could breathe, my body aches disappeared, I nearly fell asleep. I got out of the tub, wrapped myself in a towel and...woke up when I hit the floor. So, here's the ironic thing: I'd been walking around so brain foggy. Well, I think I knocked some sense into my head! (Or maybe it was the bath that caused me to herx and detox?) Who knows? I am very grateful for my husband being there to peel me off the floor! And I'm fine...truly fine. But I learned my lesson. Avoid anything with codeine. Drink water before a hot bath. Try not to get sick.

On the positive side, epsom salt baths have been helping my son with joint pains--yes! Something that works--and, he's learning that it works. 

So, enough rambling. It's a new year, in a sense, as both my kids were born in the month of March. My godmother was born in March. Spring comes in March. Winter is nearly out the door. My Lyme is here to stay for a while and I'm learning to deal with it, albeit furiously. 

And I'm getting by because of the friends who have been in my life for a long time as well as some friends I've only met via the internet. So perhaps someone or some higher power is looking out for me still.  And perhaps there is more for me to do in this life as well.

The Steps of Admitting LYME

Hi, my name is Lisa and I have Lyme Disease. Yeah, it's taken me a while to admit it, especially to myself, but I'm ready to come clean. I have Lyme Disease and it's affecting me. I hate it. I don't want it but it's here, living in my head and body, all the same. I cannot change this fact.

Step 1: I have Lyme Disease. I am sick from it. You might not be able to tell when I don't feel well because I look just like myself. No broken bones. No needles in my skin. And I plaster on a smile and do my job during the day. Only my husband and kids know that when I come home from work, I have to be horizontal. It's rather a family joke now. "Mommy's going to lie down on her bed."

Step 2: If I treat this little devil inside me, I can get better. I believe that my Lyme doctor can help me, for today. There are many alternatives, from antibiotics to natural remedies, to homeopathy. I know that I need to hit the Lyme on all its levels: from biofilms to round bodies to spirochetes. I cannot do this alone.

Step 3: I believe in the Lyme groups, the people who suffer or have suffered from Lyme, who have come before me, who will come after me, who have researched Lyme and know more than most doctors or the CDC or the Infectious Disease Society. I believe that a Lyme Literate doctor can help. I believe that I can get support from other caring, infected people. Thee CDC now admits that there are at least 300,000 newly infected people every year. And those are only the ones they know about and acknowledge. I believe in people like Dr. Eva Sapi who continues to make discoveries about this disease, even though she herself has suffered from Lyme. I believe in the people who march in Lyme parades, who work to bring about awareness, research, change.

Step 4: Thinking back over my life, I've probably had Lyme for quite some time. Perhaps I got it when I was bitten by ticks, growing up in Connecticut woods. Oh, how I loved all those tree forts we built. I didn't love having to go to the doctor to get an embedded tick out from the back of my head when I was a young teenager. Could that have been THE tick? Who knows? I was pretty healthy, growing up. Strong immune system. I did have mononucleosis when I was 20 and had to drop out of college for a semester. I was always tired when I was in my 20s. And 30s. And 40s. But then, I did too much, or so I was told. Both my kids have Lyme. Did I inadvertently bequeath it to them when I was pregnant? If it weren't for my kids, I wouldn't have had myself tested. Or rather, I wouldn't have found a doctor who would test me with Igenex. I was already trying to figure out why I had bouts of lethargy.

Step 5: I admit that I've often told myself that I'm not as sick as others. And I'm not. There are people in wheel-chairs, people with heart attacks, women losing hair from Lyme Disease. People who can't get out of bed, who cannot hold a job anymore.

But that doesn't mean that I don't feel Lyme Disease attacking my body. I'm dizzy, tired, headachy. Brain foggy. I think it's affected my autonomic nervous system, unfortunately. I put on a face for the world, then worry that my husband is carrying too much of the home responsibility sometimes. Because my son has been sick for so long, many people just believe I have post-traumatic stress. They don't realize how Lyme insidiously creeps into a person's body and mind. I particularly resent the brain fog. Headaches are bad but I want to be able to think clearly. I have trouble remembering things sometimes.  I'm scared of getting Lyme-induced Alzheimer's. I am my mind. I need my mind.

I admit that I don't yet know if I have co-infections. 

Step 6: I am ready to get this Lyme out of me, to the best of my ability, knowing that I will probably never completely be Lyme-free. I need to get my body stronger again, so that my immune system can keep these spirochetes in check. I have given up gluten. I take all kinds of supplements and medications. I spend way too much money on pills and not enough on clothes, vacations, dates with my husband. With several ill people in one family, we spend upwards of $20,000 a year in medical bills (not covered by insurance.) I know I SHOULD give up sugar. Perhaps give up dairy. Maybe in time. I do exercise (bicycle--yes!) when I can.

Step 7: I need to live in acceptance, to embrace the fact that I have Lyme Disease, so that I can move on with my life and not fight the fact that I have it. To help deal with my son's PANDAS and Lyme, I began to blog, never knowing at the time that I also had Lyme. In fact, I remember when we went for my son's first IVIG. I met a few other moms of kids with PANDAS. Oh, how exciting that was! I reveled in the fact that I wasn't alone, that others intrinsically understood all we were enduring. These women spoke about Lyme rages and Bartonella. I was still getting used to PANDAS-World. It would take another few months for us to learn that my son belonged also to this once-foreign Lyme kingdom. 

Step 8: As I continue my Lyme recovery-journey, I will try to aid as many others as possible, try to increase awareness of Lyme Disease (and PANDAS, that NOT rare "rare" disease.) I will do my best to ensure that others around me have more information than I did, that others do not have to wait as long as we did to find answers and healing. I will do my best to provide support when needed.

My name is Lisa and I have Lyme Disease.

For a great blog (not mine) see: http://lymelessandlovely.blogspot.com/2014/01/top-10-things-to-know-when-someone-in.html