PANDAS disease and LYME disease, they go together like PB&J

This is one of those days that I’m not sure whether to laugh or cry or scream or bomb the property with pesticides and move to the big city where there is no sign of grass or trees or ticks.

And where my baby doesn’t end up with a big bulls eye rash on her back.

My baby that’s been on this crazy grain free diet and donkey milk to heal her gut and get healthy after PANDAS disease and massive, gut destroying antibiotics.  My baby who refuses to even eat a single M&M in class because she’d rather be healthy than eat THAT and get sick again.

But let’s back up a bit.

May 2015 we moved to “the ranch”.  Where I pulled ticks off my children on an almost daily basis.  I tried everything to keep the ticks from crawling up their legs.  But they dropped out of the trees.  They were everywhere.  And yes, I tried Essential Oils.  And yes, I even tried OFF.  I was that desperate.  Nothing worked.

June 6, 2015, PANDAS disease hit, a classic case, sudden onset, with an active case of strep throat, complete with strep “breath” and everything that goes with it and PANDAS.

Even when I knew she had strep and I knew it was PANDAS, I still insisted my doctor do a lyme disease test.  It came back negative.  Little did I know that the tests are often inaccurate, and that it will always show negative unless it’s been at least 4 weeks since the bite.

Fast forward to this week (read the rest of the blog for our story and how we got here.)  A tiny, pin head sized tick bites my daughter.  Then this rash shows up where the tick bite was.  THIS BULLS EYE SHAPED RASH.  And the CDC says the bulls eye means 100% positive lyme disease.

And now I’m looking at putting her on another round of major antibiotics.  6 weeks at the minimum.  Possibly more to kill the buggers in all their nasty life phases.

And it makes me want to scream.  Because I’m back to researching and figuring this stuff out, and why does Lyme seem to co-exist with PANDAS?  And why do so many PANDAS kids also have lyme or other tick borne diseases?  And if I don’t give her the antibiotics, or if I don’t give her the cyst buster (whatever that is), or if I give her the wrong antibiotics, or the wrong combination of antibiotics, and I miss killing them ALL, then, in the blunt words of a member of the lyme group “YOU WILL RUIN YOUR DAUGHTERS LIFE!”

Ahhh, nothing like being judged for ruining your child’s life by someone you’ve never met, and who has no idea you just spent three hours of your day milking donkeys so that your child will have every chance at staying healthy, just to have a wrench thrown in your life by a stinking bug the size of the period at the end of this sentence.  I mean, I know she means well, but let’s all have a little grace for one another, please?  Pretty please?

So, I’ll try to make more sense another day, and give you facts and figures and logic and research.

But today, I just want someone to tell me what to do.  In a nice, loving way.  And I want it to be a Still, Small Voice.  One I can Trust in.  One who will give me Peace, and Comfort, and not judge me for “ruining my daughter’s life” by making the wrong decision.  Oh Lord, I’ve made so many wrong decisions!  I’ve got so many different opinions and voices and options, and everyone has such good reasons for their side.  But in the end, I only need to hear from YOU.  So please, God, make this path clear for us, and lead us out on the other side.  I’m so ready to be on the other side.

Jesus, help us!

Amen.

Oh, and one more thing, when I get to Heaven, I’d like to have a chat with Eve about the fruit.  I mean, I’m just a bit frustrated with the whole “leaving the garden of Eden” and bugs and pestilence and disease right now.  Just saying.  SOOOOO not worth it for FRUIT!!  It wasn’t even a chocolate tree!!  (Sorry, Eve, I’m not judging.  Well, I am, but I’m with you on the sinning thing.  I get that part.  We’ll talk later about the fruit.)

(And for those of you who are worried about the pesticide bomb comment.  We bought Guineas.  And really, it’s proof God must still love us, He gave us Guineas.  Annoying, loud, hideous, tick eating dumb creatures that also lay eggs.  And eat ticks.  And did I mention they eat ticks?  I love guineas.)

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6 responses to “PANDAS disease and LYME disease, they go together like PB&J

  1. I am not going to give you any advice, I will only share my story with Lyme and if it helps in any possible way, I will be only quietly glad.
    I knew I had a bite. I thought it was some water creature from the lake. It was in 1984 in Northern Europe, I was 30, reasonably healthy and no one knew about Lyme disease then. I only had classic bull’s eye rash and nothing else. It went away in 3 weeks. In 6 months I had knee inflammation close to the bite. It was treated with physio and mild steroid creams. Since that time I knew I had joints in my body, but nothing major to disrupt my life. To make my very long story shorter, it hit me like nothing I have experienced before 24 years later, in 1998, after 2-3 years of very stressful time (but that is how I lived all my life, nothing special, it probably accumulated), very difficult long business trip to Europe, getting sick there, 8 courses of antibiotics later, 2 invasive diagnostic procedures. I believe I nearly died and not a single doctor knew what was wrong with me. It took 2 terrible years to survive to my first 2 diagnoses, coeliac and pernicious anaemia, another 2 terrible years to Hashimoto disease and other autoimmune afflictions, and 7 years to heal my gut to be able to eat only gluten and soy free. No one in my family ever had any autoimmune problems. I can’t complain. I manage my life and my limitations do not change how I feel about my life. In my age all I care is to be able to function and I am delighted that cooking and writing about it, I survive without major problems. Did undiagnosed Lyme ruined my life? I do not consider my life ruined. Would I prefer to know about the existence and treatment of Lyme at a time of the bite? Yes, I would. But it changes nothing now. I think I am lucky that European Lyme is more mild and damages mostly joints, and not brain. I sincerely wish you all the possible courage and luck. The positive moment in your predicament is that you know what you are going to deal with, and you are equipped with your knowledge. And my test were negative, too.

    • Thank you so much for sharing your story. As much as I hate to do antibiotics, this is one of those times when I feel like they’re necessary. Thanks to some great groups, and good advice, I went in to the Pediatricians office armed with an arsenal of info…which abx we needed, and for how long. He’s so sweet and never acts annoyed with me, his patient who thinks she knows it all, and he’s great about not being offended when I correct or question the treatment plan! I’m so glad you are able to live your life and control your disease, not the other way around. Bless you, and thanks for sharing!

    • Thank you Sally! I’m still at a loss. The antibiotics are in the kitchen, and I’m putting off opening the bag. I’m checking out your resources. Thank you for sharing, and praying!

      • If you have any questions or want more specifics, just let me know. I know the Lyme posts are all over the place, lol…sort of like the time they encompass! We treated everyone holistically and everyone required a totally different treatment. Crazy stuff, but it can be done!

  2. Please look into the Lyme LDI. Feel free to email me personally for more information about it. It is a very gentle treatment for the auto-immune side of Lyme. It resembles homeopathy but is not exactly the same.

    I agree that antibiotics are good for treating acute Lyme. If you kill the microbes before they disseminate, you may not need to worry about chronic Lyme.

    But just in case it should become chronic, you could need to treat the auto-immune side of it, and the Lyme LDI can help you do that. There is a FaceBook group for the Lyme LDI. You can find more information about it there.

    I was led to Dr. Vincent and his Lyme LDI after prayer, and it is working for my little boy.

    There is also a strep LDI, just in case that is ever needed.

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