Kate's Health Log
@healthlog.kateviolette.com
A "director's cut" of @kateviolette.com 's medical journey: not just what treatments they're trying but why, and how they make medical decisions generally. Also various educational bits!
📋 ME/CFS, MCAS, lyme (plus bartonella, babesia), and mold toxicity
📋 ME/CFS, MCAS, lyme (plus bartonella, babesia), and mold toxicity
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?
October 2, 2025 at 4:12 AM
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?
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.
I still have bad MCAS flares and days where I feel like total sick person shit, but it's different.
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.
But I haven't had an ME/CFS style crash in 2+ full months now, and that's amazing.
October 2, 2025 at 4:04 AM
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.
I still have bad MCAS flares and days where I feel like total sick person shit, but it's different.
really properly much better would be absolutely amazing 🙏 let it be so
September 7, 2025 at 10:50 AM
really properly much better would be absolutely amazing 🙏 let it be so
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
September 6, 2025 at 9:18 PM
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
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
still, I am glad to have this good "problem" to work through
September 6, 2025 at 9:17 PM
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
still, I am glad to have this good "problem" to work through
My Lyme specialist only practices in Oregon (and maybe Washington), unfortunately!
September 6, 2025 at 9:15 PM
My Lyme specialist only practices in Oregon (and maybe Washington), unfortunately!
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
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
September 6, 2025 at 9:15 PM
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
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
whew boy me too!! 🙏
September 6, 2025 at 9:12 PM
whew boy me too!! 🙏
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.
September 6, 2025 at 7:54 PM
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.
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. :)
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. :)
September 6, 2025 at 7:46 PM
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. :)
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. :)
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.
But I haven't had an ME/CFS style crash in 2+ full months now, and that's amazing.
September 6, 2025 at 7:45 PM
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.
But I haven't had an ME/CFS style crash in 2+ full months now, and that's amazing.
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.
But my metabolic tolerance envelope has increased, that's for sure.
September 6, 2025 at 7:44 PM
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.
But my metabolic tolerance envelope has increased, that's for sure.
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.
I have never been in such a good mood while feeling so terrible in my life, lol.
September 6, 2025 at 7:42 PM
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.
I have never been in such a good mood while feeling so terrible in my life, lol.
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
But instead, Monday was just like a real bad hangover
September 6, 2025 at 7:41 PM
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
But instead, Monday was just like a real bad hangover
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.
This is HUGE. I cannot express how amazing this is.
September 6, 2025 at 7:40 PM
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.
This is HUGE. I cannot express how amazing this is.
--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.
September 6, 2025 at 7:39 PM
--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.
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--
September 6, 2025 at 7:37 PM
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--
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. --
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. --
September 6, 2025 at 7:35 PM
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. --
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. --
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
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
September 6, 2025 at 7:33 PM
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
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
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.
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.
September 6, 2025 at 7:31 PM
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.
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.
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.
September 6, 2025 at 7:30 PM
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.
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.
This provider has been batting 1,000 with me so far.
September 6, 2025 at 7:30 PM
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.
This provider has been batting 1,000 with me so far.
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.
September 6, 2025 at 7:28 PM
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.