Sorting through the bacteria DNA in my bloodstream

Dr. P,

I don’t know what the Karius results show, but we know for sure I cultured positive for Entercoccus and Corney Bacterium in November 2005 (those records at St. Joe’s hospital),

so if the list of bacterial DNA does *not* show those two strains,

then we know the results are all bacteria since then at least–

I feel so ill right now, it wouldn’t surprise me if I did have lots of things in my blood stream….I haven’t felt this sick since 2005 or spring 2011…

Thanks again for everything,

Warmly,
Tara

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Karius Blood Test–super cool :)

Syndi,

This is the blood test I was telling you about today–it can detect the DNA of lots of bad things floating around in your bloodstream. I can’t wait to get my results 🤢🤓👍.

https://www.kariusdx.com/products/Digital-Culture

It will probably be many years before they offer anything like this in Canada, but it’s super exciting for infectious ideas medicine, especially for people like me 🙂

Hang in there…your pain will subside. Love you lots 🙂

Tara 🙂

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I’m Rockin’ the MRI blob!

Someone needs to color these babies and bring them into fashion!

Cedars-Sinai is amazing. I needed an MRI on my neck, UCLA said it was a 2 month wait for an outpatient neck MRI, and Cedars got me in less than a week. I said to UCLA, two months?? I waited less time for an outpatient MRI when I was in Ottawa, Canada, and, the MRI was completely free!

The UCLA scheduling lady was like ‘ya, um,’ AKWARD, cuz she and I both know it’s not her fault! 😜

So Cedars got me in, and now I’m rocking the free jewelry. My destiny—fashion trendsetter: making patient clothing sexy and fun 😍😛👍

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Dr. P–I’m dying of curiosity!!!!!! 😜😍

I’m so curious–what did Karius say?? Did they have any insight, did they see anything??

I just called your office to see if I could I get the results, but she said they still weren’t in yet, but that the lab called you, and you spoke with them, which peeked my curiosity even more!! 😛

I know this is isn’t urgent, and I like to save my after hours calls for when it’s a true emergency (because goodness knows I have a lot of those 🤢),

but I’m super curious what Karius said!!

If you have a moment I would love to talk with you, if not I understand, and I will see you in a couple of weeks 🙂

Love,
Tara 🙂

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Rough night: BP 84/61

I had a rough night.

The last few days I missed a couple of doses of my IV antibiotics (I’ve been too focus on my playing in my lab 😢),

and wow I’m going downhill.

I’ve been sick a long time, I know enough about medicine to know I shouldn’t be feeling this ill after two years of treatment,

but I just can’t fight this actinomycesis infection off.

I should have known I was headed towards a bad weekend when I tasted a little salty mucous come out of my lower jaw yesterday. First time I tasted that taste was when my lower jaw was super swollen when I first got the infection, and every so often I taste it again. It’s usually a warning I’m headed towards trouble.

I took my blood pressure at 4am 3 times and every time it was in the 80s–not to mention I was feeling like death–but I just couldn’t bring myself to go to the ER because I’m not sure what they can do for me there that I can’t do for my myself at home.

So I:

* dosed myself up on my IVIg. I’m too low right now. I gave myself 8 grams at 4am. * I changed up my antibiotics slightly.
* I *forced* myself to take my dog for a walk at 5am. The local Rite Aid is 24 hours and I figure if I was in super big trouble someone could help for help if I needed it. The walk was super painful, hardest walk I ever felt. I almost vomitted.

I read the other day Hippocrates said if you’re super sick you should walk, and if you can’t walk whatever you have will kill you.

I decided to force myself to walk. I was dizzy and I almost vomited on the sidewalk, but by the time I got home I did start to feel a little bit better.

When my blood pressure is this low, the best way I can describe how I feel, is that it’s like having concrete blood flowing through your veins…it’s like I’m being sucked to the ground. Like a slab is forcing me under.

Then when I got home I forced myself to get through more boxes, the boxes I’m trying I organize before I die. It’s amazing how much junk I have mixed it with important mementoes. Some boxes all I think how embarrassing it would be if I had left it for someone to sort through (and that ‘someone’ is most likely my son later in life…). Every time I finish a box I’m grateful I lived long enough to organize it.

I also tinkered a little in my lab…I couldn’t help myself…I’m really excited about my skin care stuff, I just had to tinker a little…

The way I’m feeling, I might just have to go to hospital for a few days, at least they can give me lots of fluids to boost my bp, but I’m hoping not too…

I’m not ready to die just yet…I need to finish my boxes…still too much junk mixed it with too many important things…

This was my blood pressure when I woke up around 4am:

This was my blood pressure just now:

It’s going to be a rough few weeks…

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Noah: “Maybe the problem with our immune deficiency is rooted in how our bodies process water”.

Noah went to see his doctor by himself for the first time on Thursday (I wasn’t feeling well enough to go with him and he really needed to go, plus at 14 years old I figured he’s old enough to start communicating with his doctors directly),

and when I asked him how it went he said it went well. He said she changed his antibiotics, gave him a note to pick up an over the counter nose spray, and a note for school.

“Did you end up talking about anything else?”

Noah instantly shifted a little… I could see he wasn’t sure how much he wanted to tell me. Not because the visit was bad, but actually the opposite–because the visit went so well. It was his private time.

Noah thinks about my question for a second, then says quietly, “I discussed with her one of my theories of what could be wrong with our immune system.”

Uh, hello–this was interesting news in itself–I didn’t know Noah was developing theories of his own 🤔.

He adds, “You know how we have to take Miralax to help our colon, because we have chronic constipation, and Miralax works by drawing water into the colon–so maybe the problem in our immune deficiency is based on an inability of our body to use and process water correctly.”

HOLY SHIT. **pause button please**

After ten + years of meeting hundreds of doctors and reading countless hours on the internet, my friggen 14 year old son had an idea that I haven’t heard suggested by anyone, anywhere else in the world.

Now, I don’t think Noah is correct–I actually think the lack of water in our colon is a byproduct of our immune deficiency, a symptom of it–

But the fact that Noah could think of an idea that no one else has even whispered just blew me away.

What’s even more interesting about this idea, is that I’m not sure if anyone has even studied this part of the human immune system–no one has even thought of it, let alone developed any tests to check for it. I’m not even sure they understand exactly how water works within the immune system. We know being dehydrated is bad for the immune system, but being dehydrated is bad for a lot of things in the human body.

But how the immune system utilizes water exactly and how that connects to how it functions?

I don’t think I’ve heard anyone even mentioned it.

Ever since Noah was little, I’ve had (usually random) people tell me ‘your son is extraordinarily brilliant’, so I know he’s smart (even though he’s not the best student 😡),

but there are times when Noah says something that completely knocks-me-on-the-floor.

I was so stunned by his comment–and very aware of how under-qualified I am to even respond to his idea–

So all I could say was,

“You know what, you might be right Noah, you might be right.”

Keep those thinking wheels turning.

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Sugar Helps Antibiotics Trick and Kill Deadly Bacteria

I’ve been reading all about sugar, to try and learn how sugar affects the preservative nature of products, and I stumble upon this article–very interesting–

(Would this same concept of adding sugar to medications also apply to chemotherapy drugs, because cancer cells are attracted to sugar?)

Something so simple (and cheap) could be an effective warrior…interesting–

https://www.livescience.com/14124-sugar-improves-antibiotic-treatment-persistent-bacterial-infections.html

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