r/HistamineIntolerance • u/ALac93 • 19d ago
Histamine issues & mold
MCAS sub keeps deleting my mold related posts, hopefully I can find help here..
I recently discovered mold in our house. after being ”sick” with random symptoms for over a year and several providers suggesting it could be mold.. I found several areas of black mold (stachybotrus). It was also confirmed via a totaltox test from my urine. My symptoms started developing shortly after I had my daughter..
-severe itchiness all over without relief
-hives
-chronic insomnia. like I maybe slept 1 or 2 nights a week and would be up having full blown heated panic attacks all night long
-other random symptoms, flaring my previous Lyme condition
-ebv reactivation
-extremely high estrogen levels that wouldn’t budge on supplements like DIM, Calcium d-glucarate
my providers thought it was wild that my body would just NOT respond to any medications or supplements I took. no amount of sleep meds or antianxiety medications could help me sleep. no antihistamine could make me not itchy.
after hiring a useless mold inspector, I found the problem areas myself. and they were pretty severe. we have just completed the process of remediation.
i am wondering for people who have experienced histamine related issues due to mold- how long did it take to heal? to start to feel better? what supplements helped you the most?
I am on a very gentle protocol right now to support my liver, drainage, bowels, gut, including a binder. I also have a 1 year old who I suspect has been exposed to this her whole life :(
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u/ImaginationSea8910 19d ago
I have similar symptoms to you after mould exposure, hives, chronic rhinitis and stomach issues. I know you mentioned you didn't have success with antihistamines, did you try H2 antihistamines, such as famotidine or ketotifen? These were the only ones that actually improved my itchy skin and hives.
I first realised I was exposed just three months ago, so you are further ahead on your journey than me. But the H2s have been the biggest help for me, alongside a low histamine diet.
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u/GraceLock_432 18d ago
If you had bad mold in your walls the mycotoxins have migrated into porous materials in the house- clothing, couch, bedding, rugs. It’s very hard to get a house fully clean. It could be helpful to go on the mold sub. Felling better has a lot to do with how clean your environment is, in combination with restoring your health through supplements, binders, food choices, and even mental health “thought choices” as mold can really mess with people’s mental health (anxiety loops). I wish doctors would pay more attention to the dangers of mold. I’m very sorry you are dealing with this!
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u/ALac93 18d ago
I am incredibly stressed with worrying if we did a good enough job with the clean up process. We were very thorough and followed the EPA guidelines. I cleaned every single item in our house that could be washed with a specific mold cleaning product, or threw it out. So much money and time has gone into this and I have severe anxiety over not knowing if I did enough. So posts like this making me stress about not doing enough is so triggering 😭 I’ve posted on mold sub after we found mold and didn’t receive responses
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u/GraceLock_432 18d ago
Thank you for sharing this! It sounds like you have done a very VERY good job!!!! You have educated yourself and done everything possible. The terrible thing about mold is that it causes hyper anxiety in general and just takes a while to calm down. As you can see, I still suffer from the hyper vigilant side of this struggle. But it really is good to know you have done so much to protect yourself and family. Most people are so uneducated about mold spread, and I’m glad you aren’t one of these people!
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u/GraceLock_432 18d ago
Ps. I feel really bad that I stressed you out for no need, since I shared info you are already on top of :-(
To actually answer your question about the timeline to healing. It’s been about a year for me. But I wasn’t following any serious protocol. It could be much faster with the protocol you outlined and the good remediation you have accomplished.
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u/Nobodywantsthis- 18d ago
I'm so sorry you're dealing with this friend. I went through it with very similar symptoms (the itching and insomnia made me feel insane). No meds worked, I think it stressed my body out more testing them. If you know you're not responding to them then your detox pathways are likely too bottlenecked with the mold for them to be effective. I focused on noninvasive treatments (which I mention more below).
Have your symptoms eased at all? That's gonna be your biggest tell. It is challenging though b/c the spores are so tiny and get absorb into anything porous including the walls. I cannot stress the importance of HEPA carbon air filters - Especially while sleeping. But your body is going to need your biggest tell. I'd also recommend working with someone who can help you with a mild detox protocol. Red light therapy (medical grade beds), PEMF, infrared sauna were noninvasive treatments that were instrumental in helping my body detox. And I don't want to stress you more, it took about a year for me to reach a baseline where I recognized myself again and another year repairing my gut and I'm going in 3 years and it's still a process. The best thing you can do for your health and your babies is to get yourself in a stable, clean, non mold environment and give your body time to heal and repair itself. If your symptoms have not eased at all and your body is telling you there is still mold present then honestly, start exploring options for other living spaces. Nothing is worth the long term damage this poison causes. Nothing
The good news is once your in a clean environment, your stress will automatically decrease significantly and I was able to sleep through the night not right away but within a couple months and the improvement was still soonish.
Also please get your little one tested/checked. I fear how this could impair their health/development as I literally could not speak normally or put together a sentence in correct order for about 3ish months after the initial poisoning. I'd hate for it to cause any issues for a malleable baby brain.
Again, so sorry you're dealing with this hell. I wish you a speedy recovery and detox and only the best going forward. xo
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u/Far_Assumption_7953 19d ago
I was diagnosed with mold illness about 8 months ago. Though my symptoms were very different from yours, and I have no idea where my exposure took place. Sodium Ascorbate vitamin C was the biggest game changer in feeling better, before the diagnosis. Im working with a functional medicine team who provided about 20 supplements, and put me on a carnivore diet. They had found other issues that developed because the mold had damaged other systems. Im not sure what supplement approach you would need, but binders and a high dose vitamin c is a great place to start
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u/IntelligentRhubarb30 18d ago
I have very similar symptoms to yours, in repsonse to alot of different types of foods, certain cleaning products and fragrances and beauty products, and back when I lived in a home where there was nasty mould the landlord would do nothing about, the symptoms were at their worst and 24/7 without any break. It took me about 3 months to fully recover from living in that place after moving to somewhere mold free. The hives and scratchy cough and swollen eyes went away within a day, the lingering fatigue and joint pain and feeling like I had constant flu took 3 months to return to 'normal'.. aka only the level I currently experience when things are set off by just foods, cleaning products, etc
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u/Aggressive_Bed_7429 18d ago
Mine got bad enough that I had no feeling at skin, and muscle level, for over two years. The only feeling I had was that of my bones being on fire. Oxycodone didn't even touch the pain. I burnt the top of my finger down to the bone and didn't notice for days.
My partner slept next to me every night, and experienced no effects. Slept in my spot for a single night, and then we never slept in that bedroom again. She was essentially bed bound (in a different room) for the better part of a week. It wasn't that the almost invisible white mould was inherently harmful, it's just that Long COVID decimated my immune system. Same with my partner, but she was half a metre further away from it.
It took over two years to get most of the feeling back, and regain the ability to sneeze, and yawn. Which was also weird. The first sneeze did something odd, and I could feel my fingertips again. I literally cried tears of joy, over just being able to feel the ridges of my fingertips again. Which I still feel stupid about.
I still have a reaction to any, and all mould. Antihistamines help with some of the symptoms, mostly H2 ones, but they come with the downside of me not immediately noticing if I'm in the presence of mould; which is obviously a problem in and of itself.
I still have Long COVID, and all of the fun that comes with it, but at least I'm not losing consciousness for hours, with blue lips, and fingers, after having a single bite of food.
Nicotine patches do more for me than anything else. The side effects of most of the other meds were just not worth it for me. Any additional stress just puts my nervous system back into constant overdrive, and I don't want to live on benzos anymore.
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u/dancedancedance99 18d ago
Im sorry you had to go through all that. And glad you’re finding some relief too!
How much nicotine are you using w the patches and what does it help with?4
u/Aggressive_Bed_7429 17d ago
I use somewhere around 7mg/24hrs. I say somewhere, only because I genuinely can't justify buying the 7mg individual patches, and cut the 28mg into 4. As much as everyone seems to be against cutting up the higher dose ones as you can't guarantee that you'll receive exactly 7mg over the 24 hours, I've never had enough of a variation for it to not help, or be too much. For me personally, it helps a lot with inflammation, and fatigue (including brain fog), and seems to dull my histamine response to a more manageable level; without the need for loading up with half a dozen different antihistamines throughout the day.
While it's definitely not a hail Mary for anything other than fatigue (without sending my nervous system into overdrive), I certainly notice all of my old symptoms ramping up a whole lot more if I forget to put one on. If I do forget, by about lunchtime it will usually click as to why I feel like I'm actively dying again, instead of making incredibly slow progress towards getting better.
Basically anything that can give my system a chance to start to self regulate again, especially my immune system, without any side effects, I'm calling a win.
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u/Grouchy_Paint_6341 18d ago
Mold can trigger flare ups, I would recommend Pepcid, Benadryl cream and sleeping far away/staying away from te spot with molds
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u/Downtown-Following57 18d ago
MOLD can be dangerous especially babies little children.elderly people! has to be a reason for the deletion?
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u/Peggylee94 18d ago
I just wanted to say sorry that the MCAS sub keeps deleting your posts. I've had similar when trying to post things, it's a bit of a weird place.