Daily Log: Lyme Disease ABX Protocol and PANDAS disease

Thank you so much to everyone who has been praying for our daughter since her Lyme / Bulls Eye Tick bite.  (See previous post for all my angst about giving her antibiotics!)

Since we didn’t feel like we had any option other than doing the recommended 6 weeks of anbtibiotics, I’ve decided to attempt to keep a log of Lyme disease treatment and how it affects our daughter with PANDAS autoimmune disease.  People often ask whether Donkey Milk will “work” while on prophylactic antibiotics for PANDAS disease, so maybe this journey of ours will be helpful to someone else in a similar situation. I’ll try to be objective and scientific, but if you know me, you know that goes against my grain. It’s hard for me to be objective on a good day, much less when it comes to my baby girl.  I will be updating the log as we go, so check back for progress.

Pre-tick bite “PANDAS Protocol”
July 2015
Haley was doing great, normal, 100% good. This was our daily “protocol” at this point:
A maintenance dose of 1/2 cup Donkey Milk in the morning, and 1/2 cup Donkey Milk at night.
Strict Paleo / Grain Free diet. (This does NOT mean gluten free. Read my other posts for clarification on the Paleo / Grain free diet.)
Occasional Epsom Salt baths for magnesium and detox.

August 2015  Lyme Bulls Eye Tick Bite
Haley got a tick bite on the back of her neck. (One of many tick bites this summer.) The difference was, this one got a bulls eye rash around it. The rash itched and bothered her. We took a picture of it. It was bigger the next day, and the next, and the next. Since she has super sensitive skin, and even a mosquito bite will whelp up to a half dollar size, I tried to convince myself this was just another over-reacting autoimmune reaction. I posted a picture of the rash on two different Lyme disease Facebook groups. Both were overwhelming in response. “Yes, this is a bulls eye rash,” “Bulls Eye rash is an automatic positive for Lyme, no further testing needed,” and “you have one chance, right now, to kill the lyme with antibiotics, if you don’t you’ll miss it and she’ll deal with it for the rest of her life.”

If you’ve read my story, you know how hard it is for me to knowingly give my child an antibiotic (or in this case, TWO antibiotics, plus Grapefruit Seed Extract as a biofilm buster), that are going to wipe out her good healthy gut that we’ve been building for the last year. Gut health = Brain health. Leaky Gut…you get the idea. And here I am, backed into a corner by a nasty Spirochete parasite shaped like a corkscrew that, if given the chance, will burrow into the brain, heart, tissues, bones…anywhere that it can hide from the immune system and survive. (Watch the documentary “Under My Skin” for more on this, and to give yourself nightmares.)

So, what’s a good momma to do? I looked for alternatives, stayed up researching for an herbal route, anything…but when it came down to it, I couldn’t risk letting these buggers live, not even one of them, to survive and create havoc with my child. She’s been through enough.

I went in to my poor pediatrician’s office, armed with all the great info from the Facebook Lyme Groups and Momma’s who’ve been there, and told him what I needed for my little girl.
“This is a bulls eye rash, she had a tick bite there a week ago, I need amoxicillin for 6 weeks, combo with azithromax, and a cyst / biofilm buster like grapefruit seed extract.” He wasn’t all that surprised that I was dictating her protocol. He’s been there with me before on PANDAS disease. Sweet doctor, he’s not the proud type to puff up and know it all. Love him. He gave us the prescription for everything we needed, in spite of my lack of propriety / social skills in the doctor patient relationship area.

We filled the prescriptions, and they sat in the fridge. I spent one more night researching, trying to find any alternative to giving this gut killing antibiotic to my daughter. I came up empty handed. The next day we started Our Lyme Killing Protocol.

Our Lyme Killing Protocol

Daily Log, 6 Weeks of Antibiotics

  • Day 1-3: August 28. No reactions. No diarrhea. Tick bite bulls eye continues to expand in size.
  • Day 4: Her lyme bulls eye is receding, and fading. However, she’s starting to “tick” (mouth clicking) a bit. She’s also become fearful, crying at bedtime, not wanting us to “leave.” (Separation anxiety.) These are PANDAS behaviors. I tell myself we’re doing the right thing. We have to kill the Lyme. Right? RIGHT???
  • Day 5: She had trouble with writing, reversed her letters, and melted down crying before she even got started. This was at 10 am, before she’d had her Donkey Milk for the morning. Before we started antibiotics, I would give her donkey milk first thing in the morning. Now I’m trying to space it out from the antibiotics so that the antibiotics don’t have as much of a chance to kill all the good probiotics in the Donkey Milk. This means she doesn’t get to start her day on Donkey Milk. After I gave her the Donkey Milk, Black Cumin Seed Oil, Manuka Honey, and Probiotics, she seemed much better. Still, that afternoon she had a hard time with Math. (Loss of math and loss of writing are PANDAS symptoms.) I’m trying not to freak out. Stay the course. Kill the Lyme. Heal the gut when we’re through. This is my motto.
  • Day 6: She woke up with a stomach ache, it hurt her off an on throughout the day. No other symptoms. (Are the abx causing stomach issues?)
  • Day 7:  Momma was up all night throwing up, stomach cramping.  Maybe Haley’s stomach issues yesterday morning were a virus…and I got it.  With all the antibiotics she’s on, it probably killed it before it took hold. Haley is doing great.  Momma, not so much.  We didn’t attempt any homeschool this morning, I was still sick, and no substitute showed up. Took Donkey Milk and probiotics at noon.  She did great with her school work a few hours later.  Wishing we had enough donkeys that I could drink it too.
  • Day 10:  Haley has been doing some “baby talk” age regression type behaviors (which is a PANDAS symptom.)  I thought I was just imagining it, but my hubby noticed it too.  She’s still very creative, but her coloring today seemed a bit sloppy compared to her usual detailed work.  She is also more easily frustrated…melts down crying at things that wouldn’t have phased her.  At this point, I’m hoping that these are the worst of the problems we’ll see.  I can’t believe how much longer we have to be on antibiotics!  6 weeks seems like forever.  Today I wondered if we should increase her Donkey Milk to 3x per day, or whether the antibiotics will just kill it all anyway.  Trying not to be pessimistic.  Lord, please protect my baby girl.
  • Day 17:  about halfway through the antibiotics for Lyme.  Haley is doing her “baby talk” thing all the time.  Her speech is slow, spaced apart words.  Babyish.  Honestly, it’s driving me insane.  I don’t want to reprimand her for it, because I know she can’t help it, it’s the stinking antibiotics playing havoc with her system.  Considered upping her donkey milk dose, but it’s already nearly impossible to do an AM and PM abx, and two rounds of donkey milk spaced 4 hours apart from them.  The evening dose we try to do at dinner, with the donkey milk at bedtime, but those are too close together.
  • Day 18:  I’m adding a new supplement to the mix.  Korean Bamboo Salt.  Not sure if it will have any effect while we’re doing abx, or if it will be more beneficial after we’re done with abx (more likely).  I hope I’m not “wasting” it trying it at the same time as the abx, but we may have been exposed to chicken pox this weekend, so I’m trying to give her some extra benefits.
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