Lesson 880 – Lyme Disease Thursday – Status Week 6

I definitely have a love-hate relationship with these

I definitely have a love-hate relationship with these

One of the frustrating things about treating Lyme disease is that it takes a long time – where not much seems to happen.

This past week I threw up a few times and I’ve since stopped drinking coffee in the morning (and let me tell you as both a writer and a coffee drinker that was a tough thing to do.) I normally drink 2 -3 cups of coffee in the morning and then nothing else for the rest of the day. When I stopped coffee in the morning, (the acid, mixed with the meds just did a job on my stomach) I forgot to have a cup or two in the afternoon.

Which caused a caffeine headache (a unique kind of hell on earth.)  Now I try to remember to have a small coffee with lunch or later in the afternoon in an effort to stop that (I suppose that I could just endure it for a few straight days and be done with it, but I’m not sure I want to give up coffee completely.)

This week I also discovered Food for Life’s Multiseed Gluten Free English muffins. They are not cheap and run about 5 dollars for a package of 6, but if you’re looking for an English muffin type breakfast, they fit the bill nicely.  You find them in the frozen section at the grocery store. Quite frankly when you take one out of the package, you are somewhat reminded of a brick. These babies are solid. Here’s my recipe for working with them when taken directly from the freezer:

  • Nuke on one side for 30 seconds
  • Nuke on the other side for 30 seconds
  • Split the muffin and toast it

Gluten free breads tend to have a “gummy” texture and so tasting them really helps.

I found some Gluten Free sausage patties and while the muffin is toasting I nuke a patty (I know, but I don’t have much time to cook in the morning, I have to get to work.) Honestly, if you eat one of these brick-muffins with sausage, you are full until lunchtime. Gluten free products seem to fill you up much more than non-gluten free.

Between the solid English muffin breakfast and the elimination of coffee, I’ve been able to keep my morning meds down more often than not – which is a win.

But please don’t think I’ve got this gluten free thing nailed down, last night on Facebook I shared a roasted cauliflower with pearl barley salad recipe that I had made.

“You know that barley has gluten in it, right?” a gluten free friend asked me.

Darn. Darn. Darn. Darn. Darn (but that might have explained the runny nose I had both nights.) I guess I need to do a little more reading on the subject.

On the bacteria front, one of my kids who had Lyme and now is being treated for a Bartonella co-infection (based on the very specific rash on his back along with other symptoms) is doing well.

After a few spits and starts, (he refused to take meds for a while because he had no “proof” that he was infected) he has been on meds consistently for the last month and we noticed a big change in him.

Oh the rash is still there and as it looks like scar tissue will most likely always be there, but we’ve observed that his overall demeanor is well, less mean.  It’s tough when kids become teens, often they become surly and it’s even tougher if a kid has an infection that can change behavior.

Which is it?

But honestly, since he’s started consistent treatment, it’s like we have our kid back again. He’s not argumentative, he’s not angry, he’s the kid he’s supposed to be. This is not to say he still isn’t willful, there’s not a drug on earth that could pull that out of him.

If you add that to my observation of having *no*(not a single one) rage episodes once I started meds for Lyme, it’s now two data points that alone mean nothing but combined with others might lead to a trend.  In my rage episodes, I would yell (and I mean yell) and there were a few times, I’d ask a kid to leave the room because I was that mad. Even in my anger, a part of me would recognize that this was crazy but I wasn’t able to stop it. (The time a child broke a cupboard door by slamming it because we asked her to do dishes comes to mind – and yes, she is going to be worked up soon) but remember, I’m in the relatively early stages of chronic Lyme (if there is such a thing) who knows how things might have progressed?

I wonder how many rage driven criminal acts are actually a result of Lyme or a co-infection being in the brain and body? Perhaps these people don’t need jail as much as they need continued antibiotics.

Just a thought.

The last thing I wanted to mention about Bartonella specifically (also spread by ticks) is that Doctors (and I’m talking Lyme Literate Doctors) had previously thought it could be knocked out with 1 or 2 months of medication. Now they are finding out (I’ll try to dig up the research and will post it if I find it) that the Bartonella bacteria doesn’t just attach itself to the red blood cells but actually hides inside.

As red blood cells turn over about every 120 days, that means that in order to treat the bacteria completely, you’d need to be on antibiotics for at least 5 months. This is the same behavior that we’ve seen in Bebesia so it’s not that surprising but it does explain why both of my Bart kids relapsed after 2 months of treatment.

There’s so much out there that we still don’t know. It’s going to take time for the scientists and Doctors to research this whole mess properly and it’s going to take story after story of kids and adults who are suffering from Lyme and who are willing to share their experiences with treatment for any kind of  change to eventually take place.

***

Thank you all for your comments and discussion. I read every single reply and find much value in your experiences.

Disclaimer, this is an account of my Lyme symptoms and treatment, it is not intended to be used in the treatment of anyone else’s condition. Please consult and work with your physician if you think you may have Lyme.

Let me know if you have any questions about my Lyme symptoms and/or treatment, if I don’t have the answer, I’ll find someone who does.

***
Wendy Thomas writes about the lessons learned while raising children and chickens in New Hampshire. Contact her at Wendy@SimpleThrift.com

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5 Comments

Filed under Life Lessons, Lyme Disease, New Hampshire, Personal

5 responses to “Lesson 880 – Lyme Disease Thursday – Status Week 6

  1. Hey, Wendy — you’ve probably already discovered this, but Bob’s Red Mill has gluten-free oatmeal. Hang in there, girl!

    • Wendy Thomas

      Rich,

      Thanks for this recipe (along with the tips), I’m going to be making these this weekend to put in the freezer for both my, and the kid’s breakfasts.

      Many thanks,

      Wendy

    • Wendy Thomas

      Lauren, I do know about that and I also know that they have several gluten free options (which is why I assumed that he Bob’s pearl barley was gluten free)

      I’ll get the hang of this (of course, with a little help from my friends) Thanks,

      Wendy

  2. Wendy, I make my own sausage, usually in two+ pound batches, and freeze it. I use Alton Brown’s breakfast sausage recipe, but I use ground meat, usually turkey, in the amount that it calls for meat in the recipe, and then I make patties. I usually bake the patties until they are *almost* done, freeze them and then nuke them to heat them up and finish the cooking.

    Making them myself means I get to pick the ingredients and adjust to taste, for instance, I tend to add real maple syrup to mine and two tablespoons of melted butter. I add the butter because I don’t add the 1/2 pound of fat his calls for.
    http://www.foodnetwork.com/recipes/alton-brown/breakfast-sausage-recipe/index.html

  3. Staci

    Hi Wendy – have you tried Paleo Nutrition, it’s grain free and dairy free, and easy to not have to focus on gluten free. Just buy Sarah Fragoso’s cookbook and Mark sisson’s… amazing tasty recipes, so easy to make, my kids love it! you can make muffins and cookies from cocount and almond flour to get your bread texture fixes. I am also lyme diseased with co-infections and about at week 6 as well into treatment. I found my medical doctor would not give me antibiotics because I tested negative (elisa test if that’s what it is called, the CDC mandated one). My opthalmologist that is lyme literate found the co-infectoins for my vision issues, and I am finally getting better. I also walked out on a rheumatiologist appointment when he said I had osteoarthritis and wouldn’t acknowledge lyme. My western blot is negative took, but I do have one band, #34, which on the ilad.org website says this one band or #31 is considered lyme as a diagnosis. My lyme was neuro, and I think Bartonella, but it so hard to test for that, almost impossible too many strands not detectable by blood. I didn’t know about the 120 day cycle for RBCs, thanks! good-luck! I’m already helping 5 other people after months of medical appointments not getting antibiotics… it’s a horrific epidemic.

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