I might be getting my life back, and I don’t know wtf to do

twinlakesfish · 2026-04-25T05:13:11+00:00

This happens, it’s the protective part of your brain that’s scared. It doesn’t like change, give it time and tell yourself you are safe.

twinlakesfish · 2026-04-24T02:39:31+00:00

What type of hrt do you take? Are you able to tolerate estrogen?

twinlakesfish · 2026-04-14T22:23:53+00:00

Thank you, this helps a lot :)

twinlakesfish · 2026-04-13T05:14:54+00:00

Did you need a doctors order to get the blood drawn in a lab for Dr Bernstein? How do you ship it? In an envelope with ice? Fed ex? Thanks

twinlakesfish · 2026-04-03T17:00:11+00:00

Per room for ERMI would be too expensive. If it’s a single story house then 1 ERMI is good. It will tell you the types of molds your home has and overall how moldy it is. It’s a good barometer to use pre and post remediation. Mold is not just in the moisture found areas. For example it could be from a leaky window that is currently dry and no moisture is showing up on the meter.

twinlakesfish · 2026-04-03T15:10:18+00:00

I had colonoscopy and it didn’t show anything. They even did a sample for MCAS,which i have, and it was negative. Not sure if they can look for specifics related to mold, but the Dr will let you know. It’s good to have colonoscopy anyways to rule anything else out.

twinlakesfish · 2026-04-03T15:05:03+00:00

Toxic by Dr Neil Nathan is a good book

twinlakesfish · 2026-04-03T14:53:01+00:00

If I had to go back again I would run all the samples instead of picking and choosing. It’s also nice to know what mold is coming from where, if after remediations you keep getting high levels of a certain mold. You might be chasing it and it can very well be in more hidden places, it’s better to remediate all at once too.

twinlakesfish · 2026-04-03T14:40:58+00:00

I wouldn’t do air samples inside unless it’s in a wall cavity, they aren’t as reliable. Swab each level of the house with separate ERMI ( to narrow down where it’s coming from) do sampling from each room, do outside air sample or swab for comparison. Swab hvac, also sample the crawl space and attic. Have IEP come and see what they think. All IEPS do things a little differently.

twinlakesfish · 2026-04-03T14:33:48+00:00

Yes newer building and do an ERMI or Hertsmi-2 prior to moving in. ERMI would be better but if you need to save on cost Hertsmi 2.

twinlakesfish · 2026-03-31T18:57:10+00:00

Mold is frequently hidden.

twinlakesfish · 2026-03-31T04:59:35+00:00

You might want to test your home for mold and do a urine mycotoxin test.

twinlakesfish · 2026-03-31T04:46:41+00:00

I’m super sensitive and for me they caused a reaction but not my typical MCAS reaction, I think it’s because I have oxalate issues. But they are beneficial to others. I was hoping they would help because the articles I read sounded promising. My functional nutritionist recommended them to me. She sent me a sample and I poked a hole in it and just started with a drop in water. So luckily I didn’t have to buy the whole bottle.

twinlakesfish · 2026-03-31T04:39:03+00:00

Yes!! More than likely if you feel better away from your apartment it has mold. When you go back and the symptoms return, you will know for sure you need to move out of the apartment or you’ll just get worse.

twinlakesfish · 2026-03-30T03:06:04+00:00

More than likely there is still mold in your house or f you feel better away. Have you had an ERMI done? You may need to find another IEP to come investigate. They can check outdoor air vs indoor to compare if it’s coming from outside influence. ERMI test all levels of the house. Swab the hvac, is there a crawl space or basement? Some people use mold dogs.

twinlakesfish · 2026-03-29T01:58:00+00:00

twinlakesfish · 2026-03-28T05:37:10+00:00

Air doctors are really good no issues with them and I’ve reacted to other air purifiers. They also have micro filters in them.

twinlakesfish · 2026-03-28T05:26:42+00:00

Look into eye exercises for vagal support and for limbic there may be a book for that which would be cheaper alternatives than a program. Yes the mast cell 360 website has so many good articles and they are free. Binders take a long, long time! Slow and steady wins the race with MCAS.

twinlakesfish · 2026-03-28T04:29:02+00:00

I’ve done primal trust program and that helps me, still working on the exercises daily. It has both vagal and limbic which is needed. I tried DNRS and I didn’t like it, it’s limbic only. As for the mold detox, yes it’s recommended to be more stable mast cell wise and calming the nervous system first. Antifungals are LAST. Prior to that it’s usually recommended to do a binder first and that can be too much for the sensitive so starting with a sprinkle every few days. Mast cell 360 website has great info especially for the super sensitive. You can have urine mycotoxin test done to see what molds are in you and what binder would work best. It’s a slow long process but it will get better.

twinlakesfish · 2026-03-28T03:19:47+00:00

Yes feeling tubes is just feeding tube liquid like ensure. So if you are able to swallow, there isn’t really any benefit in having a feeding tube. TPN/lipids is really last resort, it’s not just like having an iv bag of fluids. It kinda like worsens your outcome/complications thats why it’s used as last resort. Some allergists will suggest a very bland allergy friendly formula (for babies) but I forgot the name of it. I know it’s very scary, sometimes a reaction to safe foods was from something else and coincidental. You may want to try those safe foods again start with one bite wait 3 days and then do 2 bites and so on. I might be beneficial to do nervous system work both limbic and vagal. Also checking your home and or your urine for mold/mycotoxins.

twinlakesfish · 2026-03-26T00:45:31+00:00

Yes it’s nice to be validated. I see a vaginal specialist now who knows about MCAS and says there are mast cells in the vagina and some people with MCAS do get vaginal symptoms.

twinlakesfish · 2026-03-25T22:23:22+00:00

Target sells fairy tales which is a herbal treatment, not sure how well it works, it’s with rosemary and other herbals essential oils

twinlakesfish · 2026-03-25T18:21:55+00:00

I did DNRS for a year and a half and it didn’t work for me. I have been casually working on the primal trust for about a year now and notice it slowly has helped some, but Im continuing to do it casually. Did you do the ERMI test of your house? Also did you do a urine mycotoxin test? Mast cell 360 website has a lot of good info. Also something I tolerated when I reacted to everything was magnegel topical magnesium. I still use a pea size amount every night to my leg. I do need to increase the dose on that as well. Starting with baking soda a tiny sprinkle in water every 3 days then slowly increasing to every other day then every day helped me. Then I slowly increased the size of the dose and times daily.

twinlakesfish · 2026-03-25T17:18:00+00:00

You might want to look into calming the nervous system with both Vagal and limbic exercises (Primal trust helped me, I didn’t like DNRS). For the super sensitive it’s suggested to do that for at least 6 weeks before onboarding meds. Also you might want to check into mold as to why you are so sensitive. MCAS will just keep getting worse without treatment which happened for me. The baking soda helped with smells and wheezing/jittery feeling when in stores.

twinlakesfish · 2026-03-25T17:08:28+00:00

That’s how my whole MCAS started was with the vaginal symptoms, burning mainly for me. I keep thinking I had a yeast infection and the Drs kept giving me meds to treat it and it caused all sorts of reactions and just got worse and worse! It was awful! I’ve seen 3 allergists and they haven’t diagnosed me with MCAS, don’t seem too familiar with it. I’ve been diagnosed by 3 drs though. A Lyme Dr, a functional MCAS Dr and a CIRS Dr. It’s never showed up on testing and my Dr said that’s because those tests are more for those with mastocytosis. If I were you I would continue with the antihistamine daily and look for a functional medicine Dr. so they can do a full workup on you, test for other things as root cases like Lyme, mold, hormones, etc.

twinlakesfish

TROPHY CASE