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Kate's Health Log @healthlog.kateviolette.com · 18d

yeah!! 🥹🙏

Kate's Health Log @healthlog.kateviolette.com · 19d

Thank you! Ah so you understand how weird and precious early (possible?) recovery feels! Any advice on how to navigate the feelings of uncertainty around early possible recovery?

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Kate's Health Log @healthlog.kateviolette.com · 19d

I'm now 3 months without an ME/CFS style crash. (Meaning where I am so severely metabolically limited it feels like if I move or even think too much that day I might credibly be risking my life.)

I still have bad MCAS flares and days where I feel like total sick person shit, but it's different.

Kate's Health Log @healthlog.kateviolette.com · Sep 6

And I didn't want to talk about this sooner, because like anyone with this illness knows--ME/CFS has ups and downs. You can have a good week and then it's gone and you don't have another week that good for months.

But I haven't had an ME/CFS style crash in 2+ full months now, and that's amazing.

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Kate's Health Log @healthlog.kateviolette.com · 19d

First walk for fun since 2023 🫡

(other than a short jaunt literally just across the street to a cute shop in September)

Wed, Oct 1
Outdoor Walk
7:21PM-7:31PM
Portland
Workout Details ›
Workout Time
0:09:47
Distance
0.39Ml
Active Calories
23CAL
Total Calories
38cAL
Elevation Gain
16FT
Avg. Pace
24'35"/MI
Avg. Heart Rate
97BPM

Effort
5 - Moderate

A graph of my heart rate over the course of the walk, labeled with custom heart rate zones to help prevent me from overdoing physical activity. Back when I had more frequent ME/CFS crashes, 80s is free, 90s means I need to sit down soon, 100 means I should sit down right away. My current tolerance appears to have shifted upwards by about 10 bpm. So, activity in the 90s is relatively free (but still needs to be limited), low 100s means I should stop soon, 110 means stop now. I got about the first half of my walk in before my heart rate started hopping above 100. This is pretty good for me!

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Kate's Health Log @healthlog.kateviolette.com · Sep 7

really properly much better would be absolutely amazing 🙏 let it be so

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Kate's Health Log @healthlog.kateviolette.com · Sep 6

it is! I will admit to it also being kind of disorienting and weird, but I'd rather have that to work through than just be stuck at the same level of sick forever

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Kate's Health Log @healthlog.kateviolette.com · Sep 6

me too! it is also kind of unsettling! 😅 things suddenly being different is unsettling even if it's a good suddenly different

still, I am glad to have this good "problem" to work through

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Kate's Health Log @healthlog.kateviolette.com · Sep 6

My Lyme specialist only practices in Oregon (and maybe Washington), unfortunately!

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Kate's Health Log @healthlog.kateviolette.com · Sep 6

Hi! The functional genetics naturopath I see (Bob Miller) who suggested HydroPerox Ease is based in PA but can see people anywhere in the US.

tolhealth.com/about-us/

My main doctor (an MD who specializes in ME/CFS and Lyme) can see people in many different states, unsure re: NJ:

rthm.com

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Kate's Health Log @healthlog.kateviolette.com · Sep 6

whew boy me too!! 🙏

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Kate's Health Log @healthlog.kateviolette.com · Sep 6

It's been so weird!! Bracing for impact the next day after possibly overdoing it and then...just feeling very bad but not like I'm in metabolic danger? It's so weird. Extremely, extremely welcome, but so weird.

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Kate's Health Log @healthlog.kateviolette.com · Sep 6

This is what can happen when people receive accurate diagnoses and appropriate treatments for them. 🙃

If you made it this far, thanks for reading this unexpectedly very long thread.

With luck, I hope to be able to tell you about even more cool improvements in another two months' time. :)

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Kate's Health Log @healthlog.kateviolette.com · Sep 6

And I didn't want to talk about this sooner, because like anyone with this illness knows--ME/CFS has ups and downs. You can have a good week and then it's gone and you don't have another week that good for months.

But I haven't had an ME/CFS style crash in 2+ full months now, and that's amazing.

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Kate's Health Log @healthlog.kateviolette.com · Sep 6

Again, I don't think I'm cured of ME/CFS. I'm absolutely certain, just based on ongoing other symptoms and my general energy level, that I could land myself in a metabolic crisis type crash again if I were to really overdo it.

But my metabolic tolerance envelope has increased, that's for sure.

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Kate's Health Log @healthlog.kateviolette.com · Sep 6

I mean, a REAL real bad hangover, but nonethless--I did not feel that metabolically I was in imminent danger. Was I low energy? Sure as fuck I was, yes. But in imminent metabolic *danger*? No.

I have never been in such a good mood while feeling so terrible in my life, lol.

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Kate's Health Log @healthlog.kateviolette.com · Sep 6

After an MCAS attack took me to the ER in the middle of the night on Sunday/Monday, usually I would've been expecting a terrible ME/CFS crash the next day, having my sleep disrupted like that (not to mention all the lights and sounds at the ER).

But instead, Monday was just like a real bad hangover

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Kate's Health Log @healthlog.kateviolette.com · Sep 6

These very bad next days are now like: I can tell, say, if I have to get up to use the bathroom, it's going to feel fucking awful and be difficult and even slightly delay my recovery--but it's not going to put me in metabolic danger.

This is HUGE. I cannot express how amazing this is.

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Kate's Health Log @healthlog.kateviolette.com · Sep 6

--instead of that feeling of "oh man if I move too much or even think too much today, I will be putting myself in real danger of actual metabolic collapse", I have just felt like very bad normal person shit the next day.

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Kate's Health Log @healthlog.kateviolette.com · Sep 6

To be super clear, I am not suddenly cured of ME/CFS. I still have very reduced energy, my longtime "molasses" muscle feeling (but that's been improving too), etc. But when I've physically overdone it in a way that would have caused a bad crash earlier this year, it's different--

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Kate's Health Log @healthlog.kateviolette.com · Sep 6

The second reason I sat down to write all this is to give an update on how I've been doing. It's been weird. Good weird, but weird.

I've been on a medication to fight the babesia since the last week of June. And for about two months now, I have not had any ME/CFS-style metabolic crisis crashes. --

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Kate's Health Log @healthlog.kateviolette.com · Sep 6

Anyway, here is the first point of two reasons I sat down to write this thread:

1. If you suspect you may have Lyme, and have severe fatigue, make sure you get tested for babesia as well. If something other than babesia odocoilei comes back as negative, get tested specifically for b. odocoilei

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Kate's Health Log @healthlog.kateviolette.com · Sep 6

Also known among Lyme doctors: if a patient presents with severe fatigue, like real severe, babesia is usually at play.

Babesia lives in your red blood cells and eats the oxygen off your hemoglobin. Fun times! 🥴 No wonder this infection is associated with severe fatigue.

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Kate's Health Log @healthlog.kateviolette.com · Sep 6

Worth noting: the 2022 testing I got specifically tests for babesia odocoilei -- a specific species of babesia that Lyme-literate doctors regard as the real nasty form of babesia, since it has an increased affinity for forming fibrin nests.

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Kate's Health Log @healthlog.kateviolette.com · Sep 6

I got a couple of opinions, and was planning on doing our best with my main doctor (he treats ME/CSF and Long COVID generally), but in early 2025 a local Lyme-literate ND's books opened up and I hopped at the chance to work with them.

This provider has been batting 1,000 with me so far.

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Kate's Health Log @healthlog.kateviolette.com · Sep 6

So since late 2023, I was starting to try to find a Lyme specialist I felt good working with. There are no gold-standard treatments for Lyme, treatments are highly individual and rely on doctor's individual discretion and clinical experience.

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