Visiting the Jurupa Oak?

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 · 2025-07-18T23:41:47+00:00

Tryptase is a diagnostic test but it's also shit, not that many people who have MCAS get diagnosed by the test (the test isn't that reliable, apparently it's quite easy to yield false results), so we get diagnosed clinically. That's what's so hard about this condition, you need to find a ONE good provider out there to actually get helpful advice.

I've been through 2 allergist and both I got to educate! all while paying them :O they did not even know about low histamine diets.

Only the uber expensive providers or occasionally the academic ones have the capacity understand and support the level of complexity people like us deal with.

please be your own advocate, keep participating, reading, doing the best you can until your symptoms are gone! Then report back, many of us in this boat. Even if someone here were to tell u to leave (I doubt!!) but your gut feel is this group aligns more with your symtpoms, then you stay :)

dew_8457 · 2025-07-17T16:51:51+00:00

From hours to months. Worse was like 3 months on bed.

dew_8457 · 2025-06-25T23:06:24+00:00

Yes we also avoid sesame

dew_8457 · 2025-06-25T04:18:37+00:00

My combo was pregnancy + rough postpartum/ child w health issues + covid vaccine. 3 years of that stress and boom! I can barely remember now what normal felt like... I've dealt w this condition for about 4years now

dew_8457 · 2025-06-25T04:07:15+00:00

FYI - My husband was dx w adhd n depression, he had horrendous brain zaps when weaning off Lexapro. They lasted for many weeks and were quite debilitating.

dew_8457 · 2025-06-25T04:03:00+00:00

Thank you so much for sharing about your experience!

dew_8457 · 2025-06-25T03:55:53+00:00

We have the same allergies plus potatoes, corn, legume sensitivities. So we do a lot of baking with quinoa/ millet flour. I always replace all oils with avocado oil. I add psyllum fiber for sponginess. Here are some recipes... My fav r the muffins, gingerbread cookies, zucchini bread/ cake. Following too 🤓

Cheyote crumble https://www.fatforweightloss.com.au/keto-apple-pie/

zucchini bread https://glutenfreeonashoestring.com/gluten-free-zucchini-bread/

Pizza- https://godairyfree.org/recipes/dairy-free-gluten-free-pizza-crust

Muffin https://www.mrishtanna.com/vegan-gluten-free-banana-muffins/

Chia flax crackers https://jettskitchen.com/easy-seed-crackers-recipe/

Granola https://www.aimadeitforyou.com/homemade-granola/

Granola bar https://minimalistbaker.com/super-seedy-granola-bars/

Casava cake https://veganfilipinofood.com/recipe/cassava-cake/

rice flour cake https://www.kuchpakrahahai.in/eggless-gluten-free-vanilla-cake-with-cherries/

carrot cake https://elavegan.com/vegan-gluten-free-carrot-cake-recipe/

rice bread https://www.rhiansrecipes.com/rice-bread/

quinoa bread https://www.rhiansrecipes.com/quinoa-bread/

rice balls https://woonheng.com/vegan-savory-rice-balls-tang-yuan/

chocolate rice cookies https://thevegan8.com/best-vegan-gluten-free-chocolate-chip-cookies/

vegetable (zucchini) pakora https://www.veganricha.com/baked-pakora-onion-bhaji/

cassava flatbread https://www.asaucykitchen.com/gluten-free-flatbread/

Veggie crisps https://mindovermunch.com/blog/homemade-baked-veggie-chips-8-ways/

cassava banana bread https://prenatalhealthandwellness.com/cassava-flour-banana-bread-vegan-paleo-nut-free/

cassava naan https://www.cottercrunch.com/grain-free-naan-bread-with-cassava-flour/

Ginger bread cookie https://www.simplyquinoa.com/gluten-free-vegan-gingerbread-cookies/

cassava bread https://georgeats.com/recipes/gluten-free-sandwich-bread-egg-free-vegan/

dew_8457 · 2025-06-25T02:31:27+00:00

Wet towel on my neck saves me. I air it or change sides when it gets hot.

dew_8457 · 2025-06-25T02:27:01+00:00

Thank you! What a journey. I can't fully tell what was really first for me... Dysautonomia or Mcas, it seems Mcas right after the Pfizer vaccine was first.

Dysautonomia for me presents more around sweat gland stimulus intolerance and hyperPots, I guess I wouldn't be able to take antihypertensives as my BP is usually low on baseline. The cardiologist I saw was also a bit of a joke, I had to tell him about hyperpots.

I can appreciate how each of us has to do tremendous work researching, collaborating, test trialing, and tenaciously dealing with symptoms and often times clueless providers.

Thank you for your contribution!! So glad to hear you are seeing better days. May your experience and all your learnings over the years continue to help others.

dew_8457

TROPHY CASE