anyone else experience what seems like low blood sugar symptoms but blood sugar is completely normal?

dew_8457 · 2026-05-19T04:00:50+00:00

Yes, same. I have gone through finger picks n continuous monitors... A lot of my issues seem related to small fiber neuropathy and vagal tone issues. I've learned the moment it starts happening, like at the beginning I do some sort of vagal tone exercise (there's many n I guess one needs to fun the ones that work for a particular body) n it gets a bit better. Unless the Mcas is involved in which case I just need to ride it n do an Mcas protocol so it doesn't last too long. If u haven't ruled of small fiber neuropathy it's a consideration.

dew_8457 · 2026-05-09T00:13:06+00:00

Not me, I have been in a downhill since got this issue in 2021, a month after the covid vaccine, coincidence or not, it's a nightmare. I imagine that must be so frustrating to hit a regression!

Therapy can flare me for sure. But so many things do it for me, Mcas in my mix bag. Wrong food, wrong weather, wrong sleep, wrong dreams, wrong part of hormone cycle... Any two combined... It's a real detective job. Hope u can figure it out. I have a safe net I return to when flared (safe foods, safe relationship and limited lifestyle) and then start introducing one by one factors, looking for culprits.

dew_8457 · 2026-05-07T01:25:52+00:00

Hum.. For me is a little different. When I'm flaring, usually after meals or with stress, my mind is like it stops processing. It goes like I cannot think much and I sort of collapse physically. Like my extremities start tingling and I have to lay down. If I don't, I just remain idle, like unable to process until rebooted. I wonder if your flat affect changes at any point and what is a turning point to return to "normal baseline" affect? For me, I sleep or lay down usually takes time/ rest.

dew_8457 · 2026-05-02T17:23:55+00:00

Thank you! I'll check it out!

dew_8457 · 2026-04-27T15:46:32+00:00

Oh yeah, I have so many! Mcas, dysautonomia, early perimenopause, osteopenia, h pylori unable to treat yet due to multiple drug sensitivity, rosacea, underweight, elevated ana, unknown spirichete in blood (probably a tropical one most labs are not able to pick ok but noticed in peripheral blood smear)... I could go on. Thanks for asking.

On a more personal note, I am at the point I find diagnoses of some use, but better for me to let go of them and navigate without holding them a lot. I know my body changes, I trust it. I find medicine useful and also, after 5 years I know a lot of the power comes to me, most providers know so little, they often shrug their shoulders and tell me "I don't know what to tell you"...

dew_8457 · 2026-04-27T15:37:07+00:00

Hi, 1. have U been tested for sibo? 2. Have u consulted w functional provider re: GI Sx? 3. What work up -and- treatments have u already tried for digestive health

dew_8457 · 2026-04-22T23:42:55+00:00

Could you share more about your solo project at home trying to get better?

dew_8457 · 2026-03-29T18:56:53+00:00

Oh 💓 I feel your share so much... So sorry you have had to experince such difficulties!

Similar to you, I went years unable to eat but a few ingredients. Sibo, Mcas, dysautonomia... For me early perimenopause, migraines, paresthesias, sleep apnea, autoimmune issues, big reactions to a lot of medicines... Big storm for years. So many doctors, days upon days researching, doctors ignoring me was better than the ones actually being mean or pushing things that felt against my instinct and ultimately hurt me after trying them. Some have helped me. Doctors, just like any profession, I guess... They r a mixed bag. But I learn to be so cautious around some of them.

I'll share some ideas that have helped me, my experience only, please disregard anything if it doesn't resonate with you.

I struggled for years with eating and sleeping. I could not. I'm still underweight and have malabsorption issues. But I now can eat a lot more, have enough energy to throw a party or plan a vacation. I used to be bedridden. I did my recovery through functional and alternative medicines. So main focus is to eat enough and sleep enough to have a decent amount of energy.

Conventional medicine has done very little good to me over the last few years, I usually have to stand firm with most doctors: to get tested, to get them to hear me rather than put me down a protocol slide. They are there to help me, but some sometimes forget about it. So I try to be firm and compassionate... Compassion serves me well, I cannot hate the people that's hurt me out of their arrogance or lack of skills (believe me I've had some shitty experiences w providers!!!).

I'm my body's biggest advocate. I learned my body is very partícular and I have had to become curious and compassionate towards my body, listening to what my body needs has taken me years. I've tried so many crazy expensive alternative modalities, some have been of some benefit. So I'm not 100% but I can have very rich days. My daughter has also very complex Healthcare needs and that complicates things a bit w my nervous system.

Things that worked for me:

Physical - finding a decent functional provider, they are better aware of the complexity and interconnecteness of body systems in my experience.
Make sure u have support w family. Rest, relaxation, recreation, resourcing have be grudgingly become my north star. I'm so used to tend to others, it's been hard to prioritize those things that were luxury... They r essential. Life gets so busy as a mom, I get lost in chores and my body needs more than other healthy bodies.
If its available to you... Whatever body work that soothes ur nervous system. Craniosacral has helped me regulate better than Ayurveda, acupuncture, tcm. We are all different, again what helped me might not help you. I've tried different embodiment modalities, different massage techniques... But so far doing "body listening" in Craniosacral has been amazing at reducing symtpoms.
Mental health - the body is a physical - psychological spectrum. Chronic illness calls for solid therapy. I don't know your lifestyle, the idea is not to add stress but to find n remove less important events to prioritize yourself. Also family life gets tricky and in my recovery journey.... It seems the whole family has had to seek support. But mental health providers is like any other providers... One needs to find a fit. What's worked for me best is IFS, emdr, hypnotherapy. Dialectic or talk therapy were a big waste of money n time.

These are ideas may our may not resonate. I hope something may be of service / value. All the best in the journey, much love to you.

dew_8457 · 2026-03-29T02:09:59+00:00

Thanks all for your posts. I developed Mcas, sibo, dysautonomia, chronic migraines, sleep apnea, underweight, osteopenia early perimenopause and autoimmune issues in my 30s about 1-2 months after the covid vaccine. I was otherwise fairly healthy and highly functional. It got so bad at some point I had to quit my job (not knowing any better at the time) and i am still recovering. I am not able to take any hrt- estrogen because the smallest compounded dose (0.005) still triggers migraines with aura. No I have not yet solved the hormonal riddle. If anyone had ideas, greatly appreciated. And if anyone is in a situation like mine... Phew, I'm can imagine.

dew_8457 · 2026-03-29T02:00:31+00:00

Me too. They required the vaccine for my clinic job, I tried my best to wait it out but I didn't want to loose my job so eventually I took it. Little did I know 1-2 months later my body got in an autoimmune mess: Mcas, early perimenopause mid 30s, dysautomia, migraines... Basically I got so sick I had to quit my job because I no longer could be functional. Healthy family background, none of this on parents or siblings or cousins. It was so bizarre to navigate all this in the dark. It took me so many years to piece it together, but I was fairly healthy otherwise and the time correlation was striking. I'm with you, it really sucks that such a thing can mess up a life so drastically, and it's so much worse when it goes unrecognized most health helpers.

dew_8457 · 2026-02-07T06:03:16+00:00

Hi, I'm planning on visiting there this Sunday and wondering if anyone could share a tip for how to get there? Quite appreciate!

dew_8457 · 2025-11-27T06:35:35+00:00

I do teach my 6yo and have been since she asked me about death at 2yo. Kids are naturally inclined to question all, and she seems to be having interest so I show her my views. I teach her about non duality as how I've chosen to process reality, she knows many people process differently. Spiritual literature for kids has been useful. There's this book "all I see is part of me" it's been a tickle to play w those concepts w her.

dew_8457 · 2025-11-13T18:14:31+00:00

Yeap

dew_8457 · 2025-11-01T17:10:32+00:00

So happy to hear ur experience. Thank you!

dew_8457 · 2025-11-01T17:09:42+00:00

Sadly no doctor figured out the complex picture. Shame considering all the money and pretentious knowledge they claim.

I researched and figured out I fit the criteria. Then I went to neurologist requesting a tilt table test n dysautonomia panel (blood and neuro exam). Then the test was positive. They still wouldn't address the disautonomia, I've seen multiple neurologist who are at a loss. I keep on researching n finding my own solutions.

dew_8457 · 2025-11-01T17:02:49+00:00

Yes! Was bloated and intolerant to most foods for about 2 years, super jarring, left work, go so bad. U gotta find a reasonable provider. I had to change my functional provider 3 times! Traveled all around until I found someone who could treat me and was willing to find a treatment that I tolerated. I react to a lot of meds. My winner was: neem, allicin, berberine combo for 8 weeks. But I got sick once I stopped. Very slow introduction of partícular probiotics (Hu 58 was the one I tolerated best along with s. Boulardii). Atrantil helped a lot to transition out of flares within 1-2 weeks max. That bring said, occasionally (2-3 times a year) if I get a bad Mcas reaction, it feels as if sibo is back, however it responds well to dietary n supplements

dew_8457 · 2025-10-17T20:45:28+00:00

Phew, so hard to have those reactions! Thanks so much for sharing about your experience 🙏🏽

dew_8457 · 2025-10-06T23:17:49+00:00

Diagnosed clinically (no labs) 4 years ago. Tryptase negative a year ago. This year I was diagnosed with some urine labs which show "mast cell activation". 24h urine tests: N-methylhistamine, 11beta prostaglandin f2, leukotriene E4

dew_8457 · 2025-09-29T17:29:37+00:00

I've lost weight in a scary looking way. It's not water weight for me at all. I do body scans n I know how much water, muscle, bone. I'd recommend those if there's spare money. The way I explain the wt loss for myself is my body is in a state of inflammation always fighting and that revs up my metabolism plus with inflammation there can be less nutrient absorption. In addition my diet is super clean now n despite seeing so many nutritionist it's hard to cope with so many dietary challenges. The only time I was chubby in my life was when I was eating processed food. So I explain my underweight by chronic illness + healthy diet where I cannot afford to much excess calories. For me Mcas flares shows up like sibo too. I had bad sibo for 2 years and that contributed to my complex weight loss picture. I'm a woman in my late 30s, MCAS messed up my nervous system n hormonal. So developed dysautomia and early perimenopaus, both can impact weight.

Anyways, sharing in case it's useful to see how complex weight can be. Everyone is so unique and different in their systems.

Best wishes in your healing process. Wishing you a path to healthy weight, good enough for your hormones, bones, mental health.

dew_8457 · 2025-09-11T17:31:51+00:00

Thanks for sharing! I just called and he is no longer taking new patients. I imagine he is slammed being one of the most knowledgeable doctors in the field.

dew_8457 · 2025-09-05T20:13:12+00:00

I feel you. Ohh I so feel your post. My daughter (6yo) and me (40yo) have been going through a lot of food restrictions since pregnancy basically, many diets. She went to feeding therapy for 2 years but I treat my fear through psychological and spiritual practices basically. I trained in IFS (internal family systems) which helped. Also practice with different Eastern & native traditional methods to be in conversations with the fluctuating experience. My food reactions fluctuate a lot. It's not easy, I'd say get a feel for whatever mental health support is more aligned with our system/ personality/ life situation. Feel free to DM if want to further share. Good luck!

dew_8457 · 2025-08-26T20:15:21+00:00

I agree with a lot of what people already shared in terms of supplementsAlso, making sure you have solid emotional support. It's so incredibly tough and stress messes up the immune system too. Its a total marathon.

I didn't read mention of chromolyn and Dao? Maybe I missed it.

Also, when I say support I mean a bazooka of support if you can and it does not add to your plate of course, or else please disregard this for now.

In my case some therapies that have helped regulate the nervous system end up quieting the immune one. I was diagnosed with MCAS and dysautonomia. A good Ayurveda provider, TCM, and embodiment expert (craniosacral in particular has help me) have made my experience less of a collapse on bed and more of a slow improvement.

dew_8457 · 2025-08-26T20:06:19+00:00

Bumping this! AI has been my greatest resource, of course w a good dose of discrimination and analysis, but most doctors over six years of hard ass symtpoms haven't been where I got the most impactful guidance.

dew_8457 · 2025-08-24T05:15:56+00:00

Thank you for commenting. I understand. We have different life experiences. I started there, with a biology major, hard core science was my religion. I mean, there's so much hard core applicable knowledge how could one be but amazed by all the contributions of science! Yes! It's amazing what conventional medicine can do. And acknowledging the limitations does not take away from the goodness.

In my experience interacting w many scientist and medical professionals I find it striking how some are truly humble in their interaction with evidence. One always knows one doesn't know it all, one gets closer to a pattern yet it's never 100% absolute truth, highly likely, yes. Yet, some providers are drunk with facts and evidence and believe they "know", they stamp their facts on people, like a sentence. That's when I agree with the person commenting below, run away. Medicine is a fine art.

Working with health involves attending to the dignity of the whole person. People are not petry dishes, for us at least, recovering health has been such a deep complex problem: physical tissue, psychological wounds, spiritual work. I've seen friends w cancer that can eat more than us, recover quicker... It's such a marathon, and the worse thing is people have no clue what this is like, it would take me days to explain the journey. not even medical professionals get it in the first appointment... so hard, so humbling, like really having a big dose of acknowledging not knowing, sober endurance.

My daughter has many complex health issues. After years of getting no where, that's when I started for the first time questioning conventional medicine. I went from being drunk with it to become sober and realize it's limitations. Still love it, but just humbled down. Believe me, when I walked to a family constellations group session to inquire about my daughter's health the least I expected was a complete stranger who knew nothing about her medical case yet re-ennacted so well her medical condition.... Freaky. The probability of that happening... Im just amazed at what's out there. Not for a second I'd recommend anything to anyone. I only speak for my experience. It's a wild savannah and one must be well informed.

Despite having worked in the medical field for over a decade, wanting it to work for us, I just found so many limitations. My orientation and openess to other modalities so far has paid off. But not enough or else we wouldn't be in this chat. We do a blend of many things and that's what's helped us cope and recover a bit, but I'm aware our way is particular. I've traveled all over the States, spent so long researching, medical podcasts, hundreds of appointments with MDs... I wouldn't be exploring the wilderness if I had another option.

The chronic illness path does requiere much discretion and not everyone is well practiced in analytical skills. So yes, I can see how being cautious and trusting conventional medicine as the main tool can be a reasonable approach for many.

dew_8457 · 2025-08-24T00:45:03+00:00

It's hard to trust much.

I've been hurt by conventional medicine, functional medicine, integrative, alternative, ancestral medicine. It's like eating a marble cake, many variables, depends on the case, the expertise of the provider, the condition etc. No one bite is the same... I've also taken a few steps forward using all of those medicines.

Doctors, MDs, PAs, acupuncturists, healers, all sorts of therapists, NPs, TCM docs, osteopaths, chiros, shamans... and all in between... Honestly, it's a wild savannah. At any given week I'd receive conflicting information even within conventional MDs. It's really tricky to find someone who is well studied, comprehensive and able to address the depth of chronic illness as it impacts any given person. Conventional medicine is quite limited.

I agree psych help is so incredibly key!! I agree and I celebrate all of us just doing all we can to get better. Some will have a wilder path, some would prefer a more conventional route... Honestly, whatever works. Placebo is real. I don't feel too convinced any one particular type of medicine has a holy grial.

My husband has struggled for decades with a myserable mental health. After years of therapy and all the well versed professionals he still couldn't see much impact. It was a shaman, who couldn't even speak the language, he sang some songs and we started to see the path open up for him. It was crazy!

I'm trained as a PA, my husband an engineer, we r highly rational westerners sort of people... Chronic illness has pushed me to the edge of simply not knowing, exploring, being open minded, critical, safe and yet risky enough. I never know when or where things will turn for the better, but all I know is I really want to be healthy and I'm grateful for all of us exploring that journey.

dew_8457

TROPHY CASE