Do-Over?

OK, here goes. I have barely written all summer. My 2015 goal was to fix up my young adult/kids novel and finally start getting it out. I sat down multiple times this summer and struggled with it. Major writer's block. But there's more. It's the Lyme and maybe my adrenal system. I'm tired. Like, all the time. I can exercise but I'm back to lying down after I shower, even if it's just for a few moments. And my vocabulary recall is a bit sabotaged.

On a positive note, my daughter is doing better so far this school year. Not only is she performing academically (and the school/teachers have been extremely supportive,) but she can run again without gasping for air! She used to be very fast. (Where she and my son got their speed, I do not know--maybe some latent gene in me since my brother is winning races still.) Or from my husband's side. Air hunger has abated with Babesia treatment. Hurrah!

But my son is struggling still. Joint pain and focusing issues; we had to stop treating the Lyme for a bit because of bad herxes. Now he's paying for it.

And I wonder--when will this hell end? OK, perspective here: he's better than he was years ago. I've got to remember that. He's better than he was six months ago. 

Both my kids started a band this summer with friends and lo and behold--they're actually GOOD! My son started as the vocalist, but then decided he wanted to learn electric bass and he's taken to it. Like, amazingly. He pursues his music the way he did his juggling and the unicycle riding. This is the perseverance that will get a kid with PANDAS through life. My daughter is the drummer who tells her brother to focus, the one who is constantly writing poetry and song lyrics, sometimes from the perceived perspective of her brother (can we talk about empathy?)

I've hit a roadblock though. I want a do-over. I'm sick and tired of the financial issues, of things around the house not getting fixed, of my son and me not getting fixed, of my daughter stressing and distraught, of my husband feeling like we're kinda stuck. I hear about other kids and their multitude of successes and activities. Let's face it, my kids are succeeding because they are more than their diseases. But there's no catching up to the "rest" of the world. 

I feel like a complainer. A whiner. I sense stresses around every corner. I work extra hard to be kinder to everyone when I feel like crap inside. I have to kick myself to make gratitude lists when life keeps taking its punches. I just don't have the energy to keep up.

If life were a filmstrip (remember those?), I'd scoot us back a few years. The summer that my son was 3 and my daughter 1, we joined a fitness club. I used to leave the kids with the babysitters in the playroom while I worked out, then take them swimming, then sometimes have dinner there (until my husband complained about the bills!) and then to the playground. We'd drive home, past the train station and the kids would always get excited if a train was coming or going. Life was simple, sunny, in a summer of gold and sky blue.

If I had a do-over, my kids wouldn't have had Lyme then or at any time. We'd have more money, be able to take interesting vacations, have more joy in our lives. Not that money buys joy--sadly, even John Caudwell's billions can't protect his family.

But, if I hadn't been struck with these obstacles, I wouldn't have met so many wonderful people. I wouldn't know that this world of Lyme even existed. Lyme was relegated to "another person's disease." I would not have had my character tested. I would not have hired an advocate and finally an attorney to represent us when dealing with a school district. I would not have the scientific knowledge about the brain and medical triggers that I do now. I would not be keeping this website. I might not have even taken a bite out of Lyme Disease. 

If life were a movie and I could rewind it, I would hope to have the strengths I've gained in the last 6 years, along with more joy, more health, more optimism. But perhaps that's not how strength is forged. Perhaps I needed to know a different kind of suffering in order to become who I am meant to be.

I just want to get there already. Enough with becoming. I want to pull along all my friends and sister PANDAS/Lyme moms and finally reach that destination in which all of our kids as well as ourselves are healthy. We all need a do-over, and if not that, a leap ahead, a vision that all will be better someday, that our suffering and hard work is not in vain. 

PANDAS/PANS Article of Mine Published!

My article about PANDAS and PANS was published in the August issue of the Fairfield County, CT edition of Natural Awakenings Magazine! Look for the hard copy or read the online version here.  See pages 38-40 for my article and read the rest of this great magazine too!

I Cheat (with Wheat) Shh!

I should be gluten free, but you know what they say about should-ing on yourself. Gluten is inflammatory and when the immune system is under attack, it's one less thing the body needs. After all, the gut is the second brain, so taking care of that gut has its rewards. Yada Yada Yada. Talk to the hand. I ate a bagel for breakfast.

White flour, cream cheese (fat!)--I know, I know, but sometimes, a girl's gotta live, ya know?

Since Friday, I have had this wonderful sense of FREEDOM. I talked briefly with the doctor who is treating me for Lyme. In the two years I've been treating (with 2 different doctors), I haven't really seen much recovery. I'm chronically fatigued, my right hip always hurts, and I've had a gamut of other symptoms that have come and gone. I told him that I felt oh-so-much-better when on Diflucan (anti-yeast/fungal.)

So, here's the plan:  get off ALL meds with regard to Lyme for a month and just treat with Diflucan. Yep, call me an experiment. First, I was nervous. I still have electric sparks going off in my legs. I still have word retrieval issues which is challenging because I'm a writer and an educator (and this is more challenging when I'm speaking.)

But, OK. The definition of craziness is doing the same thing over and over again while getting the same bad result, right? So, let's do something different. And hey, I wanted to get off some of the antibiotics that made me sun-sensitive anyway, now that it's summertime. 

So here's what I gain from this switch: I can have coffee with half-and-half for breakfast again! One mustn't take dairy with doxycycline, so, for months I said goodbye to any dairy for breakfast or dinner. Not that dairy is good for me anyway. Additionally, I can DRINK (alcohol) without counting the days since I last pulsed the antibiotic that could make me vomit if taken with alcohol. Furthermore, I no longer have to sit UP for an hour after taking my meds (as one mustn't recline after taking doxy.) I can take probiotics any time I wish, not a calculated minimum of two hours away from antibiotics. 

I feel like a NORMAL person again! Yay!

Umm...except that I do still have decades worth of Lyme in my body and a possible untreated Babesia infection. 

I wonder if now would be a good time to try one of the two homeopaths that a couple of friends rave about; both seem to involve a little bit of voodoo which makes me cringe because I'm such an unbeliever. Placebos won't work for me; I never even got essential oils to do a lot for me, but then I was always working a ton and didn't put enough energy into learning about them. (By the way, lemon oil is a wonder for zits, but since being on doxycycline, I haven't really had any zits.) We've tried homeopathy twice so far--for my son (and it didn't help, but we probably didn't give it enough time) and for my daughter (and it helped more than we realized.) That's Option #1.

Option #2 is continuing to work with my current doctor, who is not really ILADS-trained (yet?) but who does somewhat take insurance; who does not give me enough time to communicate all my issues but who does take my $30 copay and will prescribe the meds I need; who is not up on all aspects of the multi-systemic side of Lyme Disease but who does take my $30 copay.

Option #3 is finding about $4,000 and going to see one of the top Lyme doctors in the country. Considering that we owe our credit card companies (plural!) more than ten times that amount already for the medical care of our kids, it's not very likely to happen.

Option #4 remains open to suggestions. 

When it comes to my children, I must always have a plan and an alternate plan. Of course, my son is much sicker than I have been, and he needs the best medical care possible. My daughter also needs the best so that she can be the happy, sassy kid she's supposed to be. My husband and I don't shirk from doing everything that we possibly can for them, but for ourselves, we do take shortcuts. Many shortcuts.

Doesn't it seem crazy that we're all sick in my family? Why does Lyme seems to run in families anyway? In our case, it was probably congenital, passed through the placenta during pregnancy. It also can be transmitted in breastmilk (and I nursed), and recent studies have shown that it can be sexually transmitted as well. So, there's an entire portion of our world in which the entire family is ill. Outsiders question that: How can everyone in one family have Lyme Disease? Isn't that unusual? Not at all, not at all. Unfortunately.

But--put the rest of the world on HALT for a second--on the positive side, if I'm taking Diflucan (after confirming that my liver is functioning well,) I have about 28 days left of fewer sugar cravings, more energy, and more clear-headedness. One month to see if my bicycling speed and mileage picks up, and if this change does make a difference. And if it does? What does that mean?

I will, however, keep to my typical gluten-free eating. I might have a bagel once in a while, but in general, I'm pretty fastidious about not having gluten. I need to take care of my second brain--the gut--so that the first one will actually do some thinking about this dilemma I'm in. I believe my own case of Lyme was lingering and became obvious after being triggered by long-term post-traumatic stress suffered with my son being so ill. He's not yet free of Lyme and neither is the rest of the family. Stress exists. Therefore, so does my Lyme. A mom is only as happy as her least happy child, they say. 

He's happy this morning for a couple of hours; friends slept over and they ate...bagels! I'm going to walk off my bagel and cream cheese with a friend and our dogs under beautiful deep blue skies and sunshine. For this moment, life is more than OK. Until his friends go home. But feeling normal feels wonderful for today and I won't let anything take that away.

What's Your Life Like? A Game Show

I sat in the audience of What's Your Life Like?, waiting for the game show to begin. Pick me! Pick me! It wasn't the first show I'd been to, but my seats were closer to the stage and action this time. Lo and behold, I was chosen! I would be a contestant! Wow!

The What's Your Life people gave me a make-over and the chance of a lifetime. Whatever I earned would be mine to keep, with the stipulation that I would walk away a changed person. The other two contestants, a man of about 45 with a comb-over and a woman of 93 with zero wrinkles, stretched cat eyes and garish maroon hair, whispered to each other as we gazed at the mystery doors before us. I believe she had once been SOMEBODY. 

This was a combination game show that showed on every network. The entire world was watching. I knew I was going to hit it big! First, I had to sing in front of the audience, and for that, I got a standing ovation. The comb-over dude tried to rap and was booed off the stage. The 93 year old flirted with the MC and was given a free pass. My eyes narrowed. Not fair.

She and I were shown three doors and asked to choose.

Ms. Maroon Hair chose Door #2 which led to a mansion with an Olympic-sized swimming pool and a hot-bodied pool guy who looked no older than 50. "I want it all!" she giggled. I rolled my eyes.

I was told to decide between Door #1 and Door #3. I chose Door #1.

Door #1 gave me a handsome guy, along with trips to Europe, a sweet house in a friendly neighborhood, a cool German Shepherd who obeyed every command and 2 delicious, smiley children, in that order. Yes! Jackpot! I felt so happy, I sang!

The MC asked, "Would you both like to see what is behind Door #3?" 

Sure, we shrugged, why not? 

Door #3 lead to a career as a stock analyst, a zillion frequent flyer miles, a fancy NYC apartment with a full-service bar that would be put to good use and a gym membership that wouldn't. The walls were papered with stock tickets. Ms. Maroon Hair and I grinned at each other. We'd done better than that.

But to keep it all, we had to proceed further into the game. We had to...risk it all! The second round was nicknamed the dystopian fantasy round. There were more doors to be opened. Mrs. Maroon Hair selected first and found herself in a shmaltzy assisted living facility that still managed to smell like ammonia. The young, beautiful helpers rode around in wheelchairs while the elderly, dressed in tuxedos, served them. Let me tell you, Ms. Maroon Hair knew more curse words than I did.

She was asked if she'd keep it or trade it all in for whatever lay beyond...it could be the first door she chose or something else entirely. The final door was the Sticking Door--whatever she selected now would remain with her for life. "Trade! Trade! Trade! chanted the audience. 

Suddenly, Ms. Maroon Hair had her mansion returned to her, and with it, nearly half her youth. She transformed into a gorgeous 55 year old with flowing red hair and a mermaid's tail. (I did note that she also had normal eyes with a few wrinkles crinkling the corners.) The pool boy's mouth dropped and so did he, onto one knee, as he held out an emerald engagement ring. "I'll take it!" she giggled.

Ahhh... she would live happily ever after (as long as she stayed in her pool, that is.)

I walked through my next door but nothing changed. I gazed all around--I still had the husband, the house, the dog and the kids. I began to question the MC when I realized that a gray smoke had settled all around me.

Suddenly, the dog keeled over, dead of cancer at a young age. Faulty water pipes were found in the 90 year old house and the dishwasher stopped working. The husband's company closed down. And the 2 wonderful kids turned out to be sick. 

I was asked if I would trade it all in or stop there. 

Trade! Trade! Trade! shouted the audience. 

Well, heck yeah! I'll trade, I yelled back.

"You realize that you could end up with anything else," the MC warned. 

"Sure, but I'm sure it will be better than this!" I replied. I was still hoping for that singing career in addition to the family. Maybe this was the chance to make it come true. Or perhaps, I'd be a famous novelist! "Trade!" I yelled again.

The final door led to a hospital to the left and to the right, an now even older house that suffered from lack of a new paint job as well as from faulty water pipes and MOLD. And a husband who was working out of the house part time while trying to take care of one of the two sick kids who was extremely sick and couldn't attend school.

"This is horrible!" I gasped.

"Oh, but it gets worse," the MC leered. "Watch!"

I shivered as I watched the second child struggle with illness and scholastics. And I shuddered as I saw that I had become sick as well. I wasn't a Broadway star. I was a sick chick. With a sick family. In a sick home.

"Trade!" I yelled, but no one heard me. The audience was laughing and slapping each other, and saying, "Good show!" and the MC was saying, "And we are out of time. Stay tuned for tomorrow's edition of, What's Your Life Like?"

trade! i whispered. trade..?

t...r....a...d...e...?

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