So glad you’re going paid! It’s a tricky balance to make sure real life journeys and access to resources are made widely available to all. Whilst remembering that finances are a pillar of health and need to start being treated as such.
It sounds like physicians are leaving the field as much as teachers are. It says a lot.
You are remarkable with your research, insight and understanding.
Oh wow this resonates. I was DEVASTATED when my ME/CFS specialist started firing all the patients he considered non-compliant, and I just barely made the cut... but for how long? It took me years to find him, and more to get an appointment, and there are so few experts in the field, it really didn't feel like anyone was qualified to replace him.
The good news is that the experience forced me to look at what didn't work about our relationship, and to find someone who had those qualities. Which for me, meant finding someone who was female (yes because of socialized patterns of engagement but also so as not to trigger my daddy/authority bullshit), who approaches care as a collaboration or a team project of which I am the team leader, and who believes in me working at my own pace (eg won't fire me if I don't make progress fast enough or don't want to try ALL the meds RIGHT NOW). That's turned out really well for me, and I feel more empowered about my treatment, and am making more progress now, than ever before.
But a lot of that is just luck. Like, I don't know what I'd do if THIS doctor were the one who'd left, and all I had to "learn" from it is that it sucks.
Either way, what it really illustrates is how few resources we have, and how many more we need, and how grateful I am we all have each other in the meantime.
Your last sentence says it all. Even when we find an empowering practitioner, we are still holding on by a thread. Ugh…
But good for you for not accepting the treatment of a doctor insisting on only serving “perfect” patients. I happen to have a male functional medicine doctor who is the opposite of that guy, and he’s even been seeing me for free after I stopped being able to afford him due to having left my job. He’s such a mensch. But I do usually prefer female doctors; they usually listen better.
I feel you with the doctor categories - you summed it up so well! I have yet to find a number 4 unicorn, but my goal for now is at least build a team of category 2 and 3 doctors - believe me, maybe know or not know my conditions, no desire to explore or experiment. Low bar, yes, but after seeing a bunch of dismissive, rude, harmful doctors, just having a doctor being like "Oh, yeah I've heard about EDS. That makes sense. Let me look it up real quick to refresh myself" is already a god send (even though unfortunately they cannot offer me any real directions).
It's also hard since a lot of trusted doctor lists for our spoonie conditions (ME, LC, POTS, MCAS,...) are heavily US-based :(
You make excellent points, Buffie. I don’t think I’ve seen a great doctors’ list that was widely international. The closest to it is the COVID-cautious doc list from my last post. But that is only practitioners willing to take precautions, and doesn’t signal expertise (though it probably follows that the docs who are open-minded enough to be on that list may be open enough to falling under numbers 2 or 3).
And I think keeping your expectations of the docs you’ll find fairly low makes it more manageable on your nervous system. Let one of them pleasantly surprise you some day, perhaps. But I’m a realist and expecting fours is expecting the sun, the moon, and the stars at this point.
I am so sorry for the doctor loss, Amy. Especially someone that has such a profound level of specialized care. Advocating for yourself in the medical field is EXHAUSTING and you're already fatigued 😭 Sending you so much love and as always, STELLAR LINKS that will be keeping me entertained for hours 😍
Thank you! TBH, I’m feeling kind of done with docs for now, and not through any fault of theirs. Even the compassionate and knowledgeable ones don’t have any tricks up their sleeve for LC. It’s all good though because I’m getting there on my own 💪🏻. Thanks for being here and always being so supportive! 🫶🏻
Finding a doctor that understands complex chronic conditions like LC or ME/CFS AND makes you feel seen is so hard. I’m also still on the hunt 👀😂 We have to lead our healthcare journey and be our own biggest advocate, all while being fatigued! Hoping you find the right provider for you soon.
And thank you for the shout out! I will be checking out the other newsletters you linked—hoping to find more passionate chronic illness writers on here :)
Great post — I don’t know why I missed it when it first came out! Going paid is cool!
I lost my longtime dermatologist during the height of Covid. Since he really didn’t have anything he could do for me besides prescribe antibiotics, I always just ended up talking to him about politics on my yearly visit.
Aww, you are sweet. I am just not posting that often. Considering all of the disasters we're all facing—it’s overwhelming. And, I did not have tariff darts on my bingo card.
I've worked with the ROCK STARS and lost almost all of them. ME/CFS specialist #1, ME/CFS+Pentad specialist #2, hotshot gastroenterologist, CCI-specialized neurosurgeon...
...and then a host of helpful locals: My dreamy dentist. The *entire neurology department* at our hospital. My therapist went off insurance this year and I can no longer afford her. I have two more visits with my hypermobile PT who literally holds me together of the weekly before she tables her career because childcare is unaffordable.
I once had a well-regarded oral surgeon just...retire the morning of my surgery.
It's just bonkers out there. The doctors burn out early because insurance is a nightmare and they don't have research to pull from. I can only hope there will be a new crop...how could there not with so many ill?
Congrats on going paid! HECK YEAH.
ps. I cannot take credit for MEeps! I also can't remember where I first saw it...
That oral surgeon: there HAD to be a story there. Like maybe they themselves got a life-altering diagnosis the day before or something. Yikes.
I think docs are being burned out by these corporate-run practices. Their bosses aren’t doctors anymore, they’re number-crunchers. My last PCP didn’t even try to hide her disdain for them from me, so I wasn’t surprised she opted not to return from parental leave. <sigh>
Thanks so much for the mention! I'm sorry you lost a doctor who helped, understood, and listened. Such a precious thing! I've lost my spine physiatrist, my Sports Medicine doctor, and my cardiologist, so far. There seems to be an exodus of physicians at NYU.
I just saw my very first doctor who understands and treats MCAS. It felt like such a relief to finally talk to someone who gets it. She only does video visits, so I have no idea how long I'll be able to see her for (it all depends if the government will keep telemed insurance coverage on my plan).
The costs for Functional Medicine and MCAS specialists in general are so ridiculous! There's one upstate that was $8,000 for the initial eval. How many people can afford that??
I'm curious about the testing for hereditary alpha tryptasemia. I've never heard of it before! You've also just reminded me to start tongue scraping again! haha It is very satisfying.
It feels like there’s doctor exoduses (exodi?) from every corporate-managed practice. It feels like the most we can get from them is 2-3 years before they move on. <sigh>. I’m sorry you know this particular grief, Keisha. But happy you found an MCAS doc!
Oh and the HaT test is done by a company called Gene by Gene. But ask your MCAS doc first because they often only suggest it if your serum tryptase routinely comes back high, even once your MCAS is treated.
It’s crazy that 2-3 years is the most we seem to be getting nowadays. Gotcha in terms of the test. My tryptase has been in normal range so sounds like to wouldn’t apply to me.
Also, just wanted to say when I couldn’t sleep last night, I thought about what you said in your mention of my piece and it made me smile. Means a lot that you loved it. Thank you again!
Thanks for reading and for your comments, Catherine! I’m so glad primal trust has been working for you. I’d say I’m also at about 70% and I’m about to give CFS Recovery a try, mostly because I need the coaching aspect. I’ve got all the theory and knowledge from other programs I’ve done; I just need a plan and some accountability. I do not believe any medical doctors are really going to get us to 100% (and that’s not their fault; even the creative ones haven’t been able to help me much).
So, your PCP won’t prescribe your EBV meds? Assuming it’s an antiviral (I’m on one too for this). My doc in the city is Susan Levine and she prescribes this for me and does virtual appointments. Not sure she’s licensed in Jersey though.
Thanks for your kind words of support! I wish you all the best moving forward 🤞🏻
hey, hey thanks again. Always. I rescheduled my Tuesday (after making insufficient progress toward tax return goals, lol), and will be looking into both your Susan Levine (I met someone else who sees her too!) and my doc prescribing the antivirals (she CAN I am sure, but she's a very busy doc at a teaching facility who decidedly does not specialize in chronic conditions...but...she spends TIME with me, she calls me, she lets me text her directly...and I think she might be Chronic Curious. I'm going to message her about taking on the project of learning more about mind-body approaches and chronic conditions overall. The bottom line is, and I know you get it, I am the leader of my recovery team regardless. I think there may be some limitation to the refinement of bloodwork these Primary Care docs can order though...? I may be way off on that. I've been on the antivirals, yes for the EBV, for a couple years. Is it helping in any way? Who knows, b/c EBV is either not active or "<600" as far as I can see.
So you're thinking of CFS Recovery? That's an investment for sure, and I've heard mixed reviews about MB, as I imagine you have as well. Lots of happy folks come out of there. I think I resist the big slick program vibes but that's probably religious trauma, lol. It's also frankly out of my budget, but for the $24/week I'm giving Primal Trust, I have a weekly study group, several "buddies" if I want them, all the science I can handle, and some therapy I didn't bargain for.... and I'm just the sort of checklist weirdo who can stay fairly motivated without too much external accountability needed. Also, I'm past the misery stage where everything feels impossible. BUT. I imagine a one-on-one coach would be really nice support some days. I'll be curious to hear how you like it if you join...and I trust you'll say so in one of your substacks! Forgive my morning pages being done here on your platform, lol. Off to hum and gargle and yogafy my system for the day....so I can enter Quickbooks and trust the newly stripped IRS with a calm-enough nervous system. Deep gratitude again for the community you've built here. xo
Lol, you are right about CFS Recovery’s slick program vibes. It almost turned me completely off. And it is NOT cheap, but I figured I’ll give the month to month plan 2-3 months and see what I see. I hear Primal Trust is particularly good for folks who have experienced trauma, is that true?
As for EBV, how long have your levels been <600? Wondering if you need to be on the antivirals anymore? My levels have been >600 and >150 (the ones that indicate early/reinfection) since fall of 2020. I’ve been on the antivirals since then and no change to my test levels. I don’t think the antivirals have had any impact on how I’m feeling, either. If any med is doing anything, I think it’s metformin. Been on that since 2023 and that’s about how long I’ve been actively recovering for.
Re: Dr. Levine - just a disclaimer. She’s an overwhelmed solo practitioner with little to no office support. She’ll take you on and then you’ll only hear from her occasionally. The good things about her are she’s responsive by email and she’ll always send in your prescriptions when you ask (but she never includes refills, so you have a reason to be in touch with her). She fills out disability paperwork too (though she charges separately for this). She’s very caring, just very overworked and doesn’t have great boundaries. But once you figure out her “ways,” you do appreciate her for what she does. I would never have gotten either private disability or government disability without her help.
hey, sorry for the delayed response. Got my tax return in with hours to spare, lol! So I wish you all the best with CFS Recovery. I look forward to hearing how it goes for you. You mention Primal Trust and trauma... and sure, I think the level 2 and 3 aspects are helpful for people with layers of resistance to healing that don't respond fully to all the tools in the regulate program. I think there's what I always thought of as Trauma, and lots of variations of little t trauma... and what I think I'm seeing among the healing masses of us there is that our whole culture is traumatic, especially for women, and our collective nervous systems are either totally fried or on the brink. Productivity culture (rest is lazy, I'll sleep when I'm dead), individualism (can't ask for help, I'll DIY ALL OF IT), and the urge to Get Shit Done... and overdone....all culprits to our collective collapse as well as so many of our individual systems shutting down with a Covid (or some other) trigger. I'm learning a lot. I had some childhood stuff, for sure, but I did not think of myself as particularly "traumatized" before I started going deep on my own systemic reactions and unpacking what stress is for me, what it's about in my body, and how I've historically avoided it by DOING... and while I was doing so much I felt (& identified as) so "healthy," all the while I was in activation states much of the time, addicting to my lists and projects, not stopping, resting, or really FEELING what was happening in my body for decades. I have ALWAYS slept well, and I think that alone was what kept me from snapping...but then Trump round one synced up with my daughter's launch into six years of her own serious health challenges, and being on high alert about her for literal years set the stage for my own Covid infection to flip my switch.
I'm ridiculous...I MEANT to type >600 on the EBV, not under. Me too on >600 ever since...and if I was under I would totally go off the antivirals. What maddens me is that we can't know if we're at 750 or 750,000...just...more than 600. Wth. I just wonder what years of the same antiviral really does, you know? I hadn't considered metformin....curious. You got IVIG therapy, didn't you? Did that boost you you think?
Thanks for the info on your doc Levine. I'm keeping her in my list of possibilities. Largely since I've been improving I'm paying less and less attention to the medical side of my care, but I will figure out my next phase strategy soon. It's so much WORK, being unwell! lol
Fellow tongue scraper lmao
👅 I’ll never go back lol
Same! Not so habitual with oil pulling though 👅
I was never able to stick to that one for long!
Thanks for the shout-out Amy, and congrats on turning on the paids!!
This is an outstanding piece. I’m happy to support you. You’ve earned every bone. Wishing you a transitional period of prosperity and peace
🫶🏻🥹😘
So glad you’re going paid! It’s a tricky balance to make sure real life journeys and access to resources are made widely available to all. Whilst remembering that finances are a pillar of health and need to start being treated as such.
It sounds like physicians are leaving the field as much as teachers are. It says a lot.
You are remarkable with your research, insight and understanding.
Thank you, my friend!
Exceptionally great info this week! I think it’s great that you will be getting paid for your amazing work.
Thanks so much, Meghan!
Oh wow this resonates. I was DEVASTATED when my ME/CFS specialist started firing all the patients he considered non-compliant, and I just barely made the cut... but for how long? It took me years to find him, and more to get an appointment, and there are so few experts in the field, it really didn't feel like anyone was qualified to replace him.
The good news is that the experience forced me to look at what didn't work about our relationship, and to find someone who had those qualities. Which for me, meant finding someone who was female (yes because of socialized patterns of engagement but also so as not to trigger my daddy/authority bullshit), who approaches care as a collaboration or a team project of which I am the team leader, and who believes in me working at my own pace (eg won't fire me if I don't make progress fast enough or don't want to try ALL the meds RIGHT NOW). That's turned out really well for me, and I feel more empowered about my treatment, and am making more progress now, than ever before.
But a lot of that is just luck. Like, I don't know what I'd do if THIS doctor were the one who'd left, and all I had to "learn" from it is that it sucks.
Either way, what it really illustrates is how few resources we have, and how many more we need, and how grateful I am we all have each other in the meantime.
Your last sentence says it all. Even when we find an empowering practitioner, we are still holding on by a thread. Ugh…
But good for you for not accepting the treatment of a doctor insisting on only serving “perfect” patients. I happen to have a male functional medicine doctor who is the opposite of that guy, and he’s even been seeing me for free after I stopped being able to afford him due to having left my job. He’s such a mensch. But I do usually prefer female doctors; they usually listen better.
I feel you with the doctor categories - you summed it up so well! I have yet to find a number 4 unicorn, but my goal for now is at least build a team of category 2 and 3 doctors - believe me, maybe know or not know my conditions, no desire to explore or experiment. Low bar, yes, but after seeing a bunch of dismissive, rude, harmful doctors, just having a doctor being like "Oh, yeah I've heard about EDS. That makes sense. Let me look it up real quick to refresh myself" is already a god send (even though unfortunately they cannot offer me any real directions).
It's also hard since a lot of trusted doctor lists for our spoonie conditions (ME, LC, POTS, MCAS,...) are heavily US-based :(
You make excellent points, Buffie. I don’t think I’ve seen a great doctors’ list that was widely international. The closest to it is the COVID-cautious doc list from my last post. But that is only practitioners willing to take precautions, and doesn’t signal expertise (though it probably follows that the docs who are open-minded enough to be on that list may be open enough to falling under numbers 2 or 3).
And I think keeping your expectations of the docs you’ll find fairly low makes it more manageable on your nervous system. Let one of them pleasantly surprise you some day, perhaps. But I’m a realist and expecting fours is expecting the sun, the moon, and the stars at this point.
I am so sorry for the doctor loss, Amy. Especially someone that has such a profound level of specialized care. Advocating for yourself in the medical field is EXHAUSTING and you're already fatigued 😭 Sending you so much love and as always, STELLAR LINKS that will be keeping me entertained for hours 😍
Thank you! TBH, I’m feeling kind of done with docs for now, and not through any fault of theirs. Even the compassionate and knowledgeable ones don’t have any tricks up their sleeve for LC. It’s all good though because I’m getting there on my own 💪🏻. Thanks for being here and always being so supportive! 🫶🏻
Finding a doctor that understands complex chronic conditions like LC or ME/CFS AND makes you feel seen is so hard. I’m also still on the hunt 👀😂 We have to lead our healthcare journey and be our own biggest advocate, all while being fatigued! Hoping you find the right provider for you soon.
And thank you for the shout out! I will be checking out the other newsletters you linked—hoping to find more passionate chronic illness writers on here :)
Well said!!
Great post — I don’t know why I missed it when it first came out! Going paid is cool!
I lost my longtime dermatologist during the height of Covid. Since he really didn’t have anything he could do for me besides prescribe antibiotics, I always just ended up talking to him about politics on my yearly visit.
Love your daffodils! ❤️
Oof, finding a new dermatologist may be the hardest of all. There’s such a shortage.
And it’s funny - every now and then I wonder, “have I missed one of Teri’s posts?” And then I go looking. Yours is one I don’t ever want to miss ☺️
Aww, you are sweet. I am just not posting that often. Considering all of the disasters we're all facing—it’s overwhelming. And, I did not have tariff darts on my bingo card.
Uggggh bud.
I've worked with the ROCK STARS and lost almost all of them. ME/CFS specialist #1, ME/CFS+Pentad specialist #2, hotshot gastroenterologist, CCI-specialized neurosurgeon...
...and then a host of helpful locals: My dreamy dentist. The *entire neurology department* at our hospital. My therapist went off insurance this year and I can no longer afford her. I have two more visits with my hypermobile PT who literally holds me together of the weekly before she tables her career because childcare is unaffordable.
I once had a well-regarded oral surgeon just...retire the morning of my surgery.
It's just bonkers out there. The doctors burn out early because insurance is a nightmare and they don't have research to pull from. I can only hope there will be a new crop...how could there not with so many ill?
Congrats on going paid! HECK YEAH.
ps. I cannot take credit for MEeps! I also can't remember where I first saw it...
That oral surgeon: there HAD to be a story there. Like maybe they themselves got a life-altering diagnosis the day before or something. Yikes.
I think docs are being burned out by these corporate-run practices. Their bosses aren’t doctors anymore, they’re number-crunchers. My last PCP didn’t even try to hide her disdain for them from me, so I wasn’t surprised she opted not to return from parental leave. <sigh>
The dentist def took one look at Covid and noped out hard. The oral surgeon...who knows? He seemed giddy. It was in the pre-pandy days!
As for the rest...yes. I suspect the neurogastroenterologist had some sort of nervous breakdown...the medical profession isn't just bad for patients.
Thanks so much for the mention! I'm sorry you lost a doctor who helped, understood, and listened. Such a precious thing! I've lost my spine physiatrist, my Sports Medicine doctor, and my cardiologist, so far. There seems to be an exodus of physicians at NYU.
I just saw my very first doctor who understands and treats MCAS. It felt like such a relief to finally talk to someone who gets it. She only does video visits, so I have no idea how long I'll be able to see her for (it all depends if the government will keep telemed insurance coverage on my plan).
The costs for Functional Medicine and MCAS specialists in general are so ridiculous! There's one upstate that was $8,000 for the initial eval. How many people can afford that??
I'm curious about the testing for hereditary alpha tryptasemia. I've never heard of it before! You've also just reminded me to start tongue scraping again! haha It is very satisfying.
It feels like there’s doctor exoduses (exodi?) from every corporate-managed practice. It feels like the most we can get from them is 2-3 years before they move on. <sigh>. I’m sorry you know this particular grief, Keisha. But happy you found an MCAS doc!
Oh and the HaT test is done by a company called Gene by Gene. But ask your MCAS doc first because they often only suggest it if your serum tryptase routinely comes back high, even once your MCAS is treated.
🥹🥹 I relate to what you write too! Happy to have found you here! ❤️
It’s crazy that 2-3 years is the most we seem to be getting nowadays. Gotcha in terms of the test. My tryptase has been in normal range so sounds like to wouldn’t apply to me.
Also, just wanted to say when I couldn’t sleep last night, I thought about what you said in your mention of my piece and it made me smile. Means a lot that you loved it. Thank you again!
I relate so much to the things you write about, that your posts are often my first reads ☺️
Thanks for mentioning my post! And the loss of a great provider can be so devastating. Sending you love and rest!
Thanks JD!
omg love this! thanks so much for the shoutout!
of course! love what you do 🫶🏻
Thanks for reading and for your comments, Catherine! I’m so glad primal trust has been working for you. I’d say I’m also at about 70% and I’m about to give CFS Recovery a try, mostly because I need the coaching aspect. I’ve got all the theory and knowledge from other programs I’ve done; I just need a plan and some accountability. I do not believe any medical doctors are really going to get us to 100% (and that’s not their fault; even the creative ones haven’t been able to help me much).
So, your PCP won’t prescribe your EBV meds? Assuming it’s an antiviral (I’m on one too for this). My doc in the city is Susan Levine and she prescribes this for me and does virtual appointments. Not sure she’s licensed in Jersey though.
Thanks for your kind words of support! I wish you all the best moving forward 🤞🏻
hey, hey thanks again. Always. I rescheduled my Tuesday (after making insufficient progress toward tax return goals, lol), and will be looking into both your Susan Levine (I met someone else who sees her too!) and my doc prescribing the antivirals (she CAN I am sure, but she's a very busy doc at a teaching facility who decidedly does not specialize in chronic conditions...but...she spends TIME with me, she calls me, she lets me text her directly...and I think she might be Chronic Curious. I'm going to message her about taking on the project of learning more about mind-body approaches and chronic conditions overall. The bottom line is, and I know you get it, I am the leader of my recovery team regardless. I think there may be some limitation to the refinement of bloodwork these Primary Care docs can order though...? I may be way off on that. I've been on the antivirals, yes for the EBV, for a couple years. Is it helping in any way? Who knows, b/c EBV is either not active or "<600" as far as I can see.
So you're thinking of CFS Recovery? That's an investment for sure, and I've heard mixed reviews about MB, as I imagine you have as well. Lots of happy folks come out of there. I think I resist the big slick program vibes but that's probably religious trauma, lol. It's also frankly out of my budget, but for the $24/week I'm giving Primal Trust, I have a weekly study group, several "buddies" if I want them, all the science I can handle, and some therapy I didn't bargain for.... and I'm just the sort of checklist weirdo who can stay fairly motivated without too much external accountability needed. Also, I'm past the misery stage where everything feels impossible. BUT. I imagine a one-on-one coach would be really nice support some days. I'll be curious to hear how you like it if you join...and I trust you'll say so in one of your substacks! Forgive my morning pages being done here on your platform, lol. Off to hum and gargle and yogafy my system for the day....so I can enter Quickbooks and trust the newly stripped IRS with a calm-enough nervous system. Deep gratitude again for the community you've built here. xo
Lol, you are right about CFS Recovery’s slick program vibes. It almost turned me completely off. And it is NOT cheap, but I figured I’ll give the month to month plan 2-3 months and see what I see. I hear Primal Trust is particularly good for folks who have experienced trauma, is that true?
As for EBV, how long have your levels been <600? Wondering if you need to be on the antivirals anymore? My levels have been >600 and >150 (the ones that indicate early/reinfection) since fall of 2020. I’ve been on the antivirals since then and no change to my test levels. I don’t think the antivirals have had any impact on how I’m feeling, either. If any med is doing anything, I think it’s metformin. Been on that since 2023 and that’s about how long I’ve been actively recovering for.
Re: Dr. Levine - just a disclaimer. She’s an overwhelmed solo practitioner with little to no office support. She’ll take you on and then you’ll only hear from her occasionally. The good things about her are she’s responsive by email and she’ll always send in your prescriptions when you ask (but she never includes refills, so you have a reason to be in touch with her). She fills out disability paperwork too (though she charges separately for this). She’s very caring, just very overworked and doesn’t have great boundaries. But once you figure out her “ways,” you do appreciate her for what she does. I would never have gotten either private disability or government disability without her help.
hey, sorry for the delayed response. Got my tax return in with hours to spare, lol! So I wish you all the best with CFS Recovery. I look forward to hearing how it goes for you. You mention Primal Trust and trauma... and sure, I think the level 2 and 3 aspects are helpful for people with layers of resistance to healing that don't respond fully to all the tools in the regulate program. I think there's what I always thought of as Trauma, and lots of variations of little t trauma... and what I think I'm seeing among the healing masses of us there is that our whole culture is traumatic, especially for women, and our collective nervous systems are either totally fried or on the brink. Productivity culture (rest is lazy, I'll sleep when I'm dead), individualism (can't ask for help, I'll DIY ALL OF IT), and the urge to Get Shit Done... and overdone....all culprits to our collective collapse as well as so many of our individual systems shutting down with a Covid (or some other) trigger. I'm learning a lot. I had some childhood stuff, for sure, but I did not think of myself as particularly "traumatized" before I started going deep on my own systemic reactions and unpacking what stress is for me, what it's about in my body, and how I've historically avoided it by DOING... and while I was doing so much I felt (& identified as) so "healthy," all the while I was in activation states much of the time, addicting to my lists and projects, not stopping, resting, or really FEELING what was happening in my body for decades. I have ALWAYS slept well, and I think that alone was what kept me from snapping...but then Trump round one synced up with my daughter's launch into six years of her own serious health challenges, and being on high alert about her for literal years set the stage for my own Covid infection to flip my switch.
I'm ridiculous...I MEANT to type >600 on the EBV, not under. Me too on >600 ever since...and if I was under I would totally go off the antivirals. What maddens me is that we can't know if we're at 750 or 750,000...just...more than 600. Wth. I just wonder what years of the same antiviral really does, you know? I hadn't considered metformin....curious. You got IVIG therapy, didn't you? Did that boost you you think?
Thanks for the info on your doc Levine. I'm keeping her in my list of possibilities. Largely since I've been improving I'm paying less and less attention to the medical side of my care, but I will figure out my next phase strategy soon. It's so much WORK, being unwell! lol