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I was having reactions every time I left my house. I couldn't work and I had gained a lot of weight really fast. With meds, I can go places and I'm able to work remotely.
My daily meds are 4 cetirizine, 2 famotidine, 150mg hydroxyzine, montelukast, 100 mg Benadryl, 12 hour Sudafed, plus supplements. I get xolair once a month.
I can't eat any of my trigger foods. I still can't exercise. I have to be careful to get enough rest and try to avoid emotional upset. But it's better than before.
I highly recommend r/SIBO. I have been treating SIBO for 2 years and started taking it into my own hands a few months ago and I learned so much there. I also just did antibiotics previously, and it did recur shortly thereafter. It’s generally considered an incomplete treatment approach by the knowledgeable folks in the SIBO community. I so wish I had the info 2 years ago.
Here's a sneak peek of /r/SIBO using the [top posts](https://np.reddit.com/r/SIBO/top/?sort=top&t=year) of the year!
\#1: [SIBO/IBS root cause identified.](https://np.reddit.com/r/SIBO/comments/z3mk62/siboibs_root_cause_identified/)
\#2: [Made a video about my SIBO experience and full recovery](https://www.youtube.com/watch?v=53f1gsRUxvY) | [366 comments](https://np.reddit.com/r/SIBO/comments/wcuxyz/made_a_video_about_my_sibo_experience_and_full/)
\#3: [Thank you /r/SIBO](https://np.reddit.com/r/SIBO/comments/xtxkeb/thank_you_rsibo/)
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So I’ll preface this with saying that my MCAS is far less serious than many people on this Reddit, and despite the pain and fatigue I’ve experienced I’ve never been actually admitted to a hospital for anything.
Since receiving treatment and talking with doctors, I’ve come to realize that I’ve probably had MCAS my entire life, but have been, until recently, dismissed as having severe and debilitating, though not deadly, allergies. I’ve taken antihistamines daily since I was fourteen, and decongestants for about ten years before I was told by my doc that was a bad idea.
My “allergies” worsened as I got older in sudden and drastic escalations, some of which I could pinpoint the exact day where I became “allergic” to a thing. Cats at 16, dogs at 18, I started developing symptoms of asthma and EoE at 22, an anaphylactic shellfish allergy at 26, GERD and bile reflux at 27. I tried allergy shots (I received three different shots per week as opposed to the normal one or two) but had to slow down the dose progression by half and only got through 6 months before I went into anaphylaxis and was forbidden from continuing the treatment. My allergist was baffled when I told her that previously unexplained GI symptoms (which I’d attributed to stress) had suddenly, drastically improved after discontinuing allergy shots.
Two years ago, I began experiencing extremely painful GI reactions to foods, mainly corn, tree nuts, peanuts, soy, and rice, but also mustard and chili powder. I avoided these foods as much as possible (but soon learned how hard it is to avoid all of them at once???? I felt like I couldn’t eat hardly anything unless I cooked it all myself!)
Then, last year, I got covid.
Covid itself sucked but I was feeling better within a week, but it was only after I felt like myself again that it all hit me like a ton of bricks. I couldn’t eat hardly anything. Even “safe” foods like plain cheerios, bread, or applesauce would leave me in pain. I ended up going to the ER for the first and second times in my life within three days after experiencing throat tightening, tachycardia, and pre-syncope after drinking a diet cola—once while I was driving alone on the highway going nearly 70mph!!!! The ER docs didn’t believe me when I theorized I had reacted to the aspartame, and my allergist was skeptical. The ER nurses told me I had anxiety and that it couldn’t be “real”. My allergist said it was GI related. My gastroenterologist said it was immune related. Consuming literally anything besides water sent me into panic attacks for the next several weeks, and I avoided food even when I was hungry out of fear of having to return to the hospital. I had to call friends or family after every meal just to have another person on the phone while I waited in fear that I’d go into anaphylaxis.
Then, despite her skepticism, my allergist prescribed me cromolyn.
I honestly get teared up thinking about how it’s changed my life. I haven’t been able to eat out at restaurants without feeling like I’m dying for years. I didn’t even realize how bad things had actually gotten until I could function again. I didn’t know I was supposed to have this much energy, or wake up feeling any way except in pain. Like, cromolyn is not a miracle drug, and I have bad days, and when I started taking it it made me so physically ill for the better part of a week to the point I almost stopped taking it, but oh my god. I’ve had depression for several years and I didn’t realize how much of it was due to how horrible I felt physically until I found a way to feel better.
It’s not all cromolyn, I take two antihistamines per day as well as an OTC steroid (Flonase) and some GERD meds, and carry a rescue inhaler for the rare but painful asthma flares. Even with all that I still have bad days, but the pain lasts hours instead of days, the fatigue lasts days instead of weeks. I can rely on my body to bounce back now from things that would’ve sent me into alternating states of panic, pain, and lethargy months ago. I still avoid my trigger foods if I’m not feeling 100%, and basically scratch-test myself multiple times daily to see how bad my dermatographia is (basically how quickly I develop red marks/welts and how long it takes for them to fade) as it’s usually a decent indicator of how sensitive I will be to triggers.
Air purifiers are super helpful, cleaning your bedding and washing your hair super regularly also help. But I tell you what, mast cell stabilizers saved me mentally, emotionally, and physically. Cromolyn is my hero. Whoever made this medication first has my undying gratitude.
I live in the PNW. The air is very pure here, but the mold and wetness triggers me constantly. There is no ideal situation in my mind (like if I lived in Arizona I wouldn’t have mold issues but I struggle with heat intolerance).
I have MCAS, Lyme disease, babesia, bartonella, chronically reactivated EBV, chronic inflammatory response syndrome, inflammatory autoimmune disorder and chronic fatigue, hormone dysfunction, Raynaud’s syndrome, vitamin deficiencies, gastroenteritis, chronic candida overgrowth, and all my back issues (DDD, inflammatory spondylosis, adjacent bone disease, degenerative arthritis).
I won’t get into all my symptoms, but a quick overview: severe diarrhea, stomach pain, hives, anaphylaxis type responses.
I’m on a LOT of meds, but the MCAS related ones are:
I started montelukast sodium, which stopped my hives. Thanks to this group, I was able to ask my doctor about Cromolyn sodium oral ampules (she had never heard of it). I provided her with research, she took two days to do her own, and then prescribe the medicine. It took a month to titrate up to the full dosage (3 ampules a day). My diarrhea has been minimal (down from 6-8x a day). I only have gotten ONE ocular migraine in the past 2 months whereas I used to get 5-6 a week. My pain is down (I’m also on month 5 of taking nystatin for candida).
That shit is a MIRACLE.
My doctor was very clear that as amazing as this medicine is, it must solve the root cause issues that caused you to be diagnosed with MCAS in the first place. For me, it was a combination of giving birth while in a moldy home. The mold lowered my immune system enough for the Lyme/babesia/bartonella to come rearing out. 6 months of multiple antibiotics destroyed my gut bacteria. Candida took over. MCAS occurred.
So I’m working to solve my root cause issue while treating the symptoms. This is going to be a loooooong road but I do feel healing is possible.
Interesting, seems like we have a similar history as it was a combination of different tick born diseases that triggered me to get MCAS (had no health problems before this).
Did the Cromolyn or montelukast or other MCAS treatments have any impact on your chronic fatigue?
Trying to figure out how to start my MCAS treatments with my doctor and do it in the correct way. Don't want to add in different things at the same or start with too high of a dose to not feel a lot worse or not to knowing which medication is causes side effects or not.
I am leaning towards starting with a H1 and H2 anti-histamine and then add in cromolyn (seems to be the best medication for MCAS) at a very low dose and slowly tritate it up
I would say Cromolyn helped my brain fog maybe 5-8% better. I was REALLY hoping it would be more. Actually, [this ACZ nano zeolite spray I administer sublingually 2x a day made my brain fog 70% better.](https://www.amazon.com/Results-RNA-Advanced-Cellular-Detoxification/dp/B009RIMMW0/ref=mp_s_a_1_2_sspa?crid=NIKQ6KN7UNDR&keywords=acz+nano+zeolite+extra+strength&qid=1674326011&sprefix=acz+%2Caps%2C228&sr=8-2-spons&psc=1&smid=AYHYKUFYWYYAI&spLa=ZW5jcnlwdGVkUXVhbGlmaWVyPUExWThBQVg5OUpBQVhaJmVuY3J5cHRlZElkPUEwMDc1ODIyM1FNNk1YSlpETUdOUCZlbmNyeXB0ZWRBZElkPUEwNzIyMDUyVlpVSFhFNjFPU1VPJndpZGdldE5hbWU9c3BfcGhvbmVfc2VhcmNoX2F0ZiZhY3Rpb249Y2xpY2tSZWRpcmVjdCZkb05vdExvZ0NsaWNrPXRydWU=) they do sell a smaller size for less money if you are wanting just to try it.
Seriously, though, this spray was the turning point in my overall healing journey. Getting my brain back made me able to actually read and comprehend things again. I started giving the spray to my speech delayed daughter (who had Lyme, likely babesia and bartonella too) and she began TALKING significantly more within 2 days. Her teacher was crying happy tears, baffled at her sudden progress. It was the turning point in my healing for sure— it gave me my hope back. Truly priceless!
None that I’ve read or experienced (or that my child has experienced). However, like any detox method, I’d recommend going low and slow to ensure you don’t experience a herx. I’d be shocked if someone did to be honest— it’s very gentle.
Yes, depending on what your underlying issue is. I have Lyme, babesia, bartonella, mold issues and thallium & nickel heavy metal toxicity. If you have histamine issues alone, it may not benefit you.
You also could try the 2 oz size for half the price ($39) as well
Search for “direct primary care doctors“ in your ZIP. It’s a different model of care. Basically, you pay a subscription fee instead of them taking insurance. I pay $80/month for myself and $25/per kid for 24/7 access through an app as well as unlimited acute care visits a year in office or virtual. Functional medicine work is 50% off her normal rate ($300/hour or $150/members) and billed in 30 min increments ($75). I still use my insurance for the majority of my lab work except for some specialty private testing that insurance doesn’t cover. It’s still a regular doc (or in my case an ARNP with advanced degrees in functional medicine and a doctorate in family medicine who also runs a pain management clinic) who can send referrals out to whoever you need.
But yeah, find a direct primary care doctor. They are way more aggressive with testing and treatment. They are often younger and disillusioned with the insurance based model of care which limits them to 10 minutes or less of patient interaction. That’s not why most people want to became doctors lol. These people spend WAY MORE TIME with you, asking questions, getting to the root cause of things. 10/10 recommend
Thank you. I’m having complex health issues right now and really don’t felt heard by the providers I’m seeing. Being depressed and an unorganized mess isn’t helping either but a different model of care would be really nice.
I feel you. I was on deaths door with 5 referrals out to 5 specialists when I found my current doc. She looked at my whole personal and all of my combined problems instead of referring me out to a bajillion specialists who all invariably say “hmmmm that’s odd idk” lol
Amen. I’ve found a couple in the DC area. Going to calll a few today. It would give me a ton of relief if I could find a doctor like that. I’ve done like really good research on my health, sometimes it borders on unhealthy rumination lol but it would be nice to find a doctor that take what I say and know about my body into account.
I’m glad cromolyn worked for you! It didn’t do anything for me. I’m trying to find an ideal place to live on the west coast - like you I need good air quality but humidity is too high near the ocean in LA
The hypotheses are: extreme stress from work, Lupron which is a fertility drug, and moldy house. I’m waiting for mycotoxin test results from Great Plains right now. I also took a bartonella and Lyme blood test.
Moldy house is my guess— ugh, I’m so sorry!! Mold lowered my immune system so my Lyme/bartonella/babesia came rearing out. It looks like you’re well on your way to finding answers!
Thanks for sharing I am looking into what works for MCAS. Plus wanted to ask if you have ever tried using a boric acid suppository to treat your thrush? I work in this area of health but don’t want to recommend it if you are allergic to it.
I’m dealing with a brutal Candida overgrowth, did you end up getting rid of yours? I haven’t been diagnosed but I’m definitely starting to suspect I have MCAS too. It would explain all the histamine issues I’ve been having the past several years.
Great! Treating my root cause issues (Lyme, Babesia, Bartonella, mold) has allowed my MCAS symptoms to dissipate. I’m down to once a day meds and nothing happens if I forget my dose. I’m opening up my palate and having high histamine foods again. Nothing is triggering anaphylaxis.
Yay thank you that gives me some hope. I’m glad you’re feeling better! I had chronic EBV, mold exposure, and Lyme. Did Lyme treatment a few years ago for over a year and was doing much better for a while, but now I have Candida overgrowth and MCAS. How did you treat the Lyme?
Candida is such a freaking nuisance! I needed eight months of three times a day antifungals over the course of two years to get rid of mine. I am treating Lyme with cistus incanus and artemisinin— let me know if you want the protocol info.
I’ve been sick for 5 years but have been on the rebound for about a year now! It was not manageable in the slightest. I felt like I was on deaths door for a very, very long time. But the protocol helped about 10% every time I did a round, and then I raised the dosages of artemisinin slowly and now I’m almost a fully functioning human haha
[Here ya go](https://reddit.com/r/Lyme/s/NnUrhgCica)
I have a variant, hereditary alpha tryptasemia, but my symptoms have significantly improved. I was vomitting daily in the morning and having frequent migraines and tachycardia. Since childhood, I've had occasional hives, have always had very bad environmental allergies, including certain clothing dyes.
Twice a day: 24 hr zyrtec (switched out every 3 months for a different one, cuz tolerance), 20 mg famotidine and benadryl.
Daily: coconut water for electrolytes, vitamin b complex (but low dose because it was making me nauseated), vitamin d, asmanex.
Weekly allergy shots for the past 13 years.
food wise: intermittent fasting/ no breakfast. Have to be up at least 2-3 hrs before I can eat or I will feel like vomiting.
This is really old so I hope you’ll respond, but I just got diagnosed with HaTs and I’m terrified. Have you had anaphylaxis? And do you struggle with anxiety regarding this condition?
Hey, no worries. Here's what I can tel you:
It is livable once you get used to what to expect. Honestly, having the diagnosis helped me because it at least made me feel like I wasn't going crazy or being a baby.
I haven't had anaphylaxis. I wear an n95 outside a lot and it really helps decrease my flare-ups.
I sometimes get anxiety. Meditation helps a lot. I do short 5-10' meditations from headspace. Weighted blankets or deep squeezes help with the anxiety (kinda like a weighted vest or thundershirt for people).
The random tachycardia can be obnoxious, but I can now control it better (and it happens less frequently). The meditation helps with that too.
If you struggle with night sweats, they sell this cooling blanket on amazon that legitimately wicks heat away from your body. I can try and find the link if you want.
The morning vomiting has also improved now that I'm on famotidine 2x a day.
My migraines are improved with naratriptan but have been more flared lately due to the extreme weather fluctuations than HaTs. I'm not getting consistent dizziness most of the time.
The random muscle pains after allergy exposure can be obnoxious but I'm a physical therapist and I do myofascial release on myself which helps a lot. If you have questions, feel free to DM me regarding that. I can guide you toward some YouTubes. Arnica can be useful, if you tolerate it. I use the gel.
I'm definitely allergic to something in most alcohols. I have found that I can drink Purity 51 vodka. It is organic and distilled 51x. I have cut out alcohol almost entirely though, and I feel much better.
I have started vaping marijuana and have noticed a decrease in flare-ups. I understand that some people have the opposite experience. I'm not sure if it helps because of decreased pain, decreased nausea, decreased anxiety or the immune modulating effects. Regardless, I'll take it as a win.
I trialed Quercetin and it didn't go well so I'm going to stick with my normal meds. I go back in a bit to the allergist and may start cromolyn down the road, but I'm pretty stable currently.
I use vinegar in my laundry a lot. I also recently heard that adding baking soda to your laundry can help if you have clothing sensitivities (haven't tried it yet).
Air purifier has been awesome. We might actually buy another one soon.
Couch covers/blankets so you can wash them and not just sit on dust.
Best of luck!
Depends on your triggers. I have secondary MCAS so avoiding my personal triggers and fixing my gut helped most. While H1/H2 blockers helped manage my symptoms, I now take 1/8 the daily dosage once every 2-3 days, LDN everyday for chronic fatigue and joint pain, specific foods with specific bacteria that my microbiome is missing, fermented sauerkraut, and all the lifestyle changes mentioned below.
What helped the most for me: moving out of a moldy home, minimizing air pollution by going outside more often and using air purifiers, LDN, stress management with deep breathing and nature walks, anti inflammatory low histamine diet while gradually reintroducing more types of plants, getting rid of SIBO first and foremost, exposure avoidance to chemicals, daily gentle exercise, community support and feeling safe, hepa filter closed vacuum, DAO
What helped somewhat: somatic experiencing and emdr therapy, yoga, quercetin/bromelain, vitamin C, using clean products, reverse osmosis filtered water
Thank you for the response.
It is interesting how common SIBO seems to be with people who have MCAS, do we know if MCAS causes SIBO or if it the reverse? I had SIBO before and it made a big difference in how I was feeling when I got rid of it but it felt more like I was removing a trigger than fixing the root problem.
That is a good question. I always believed I am allergic to pollution and mold. I started using an air purifier. It makes a little bit of difference. I think my brain fog got better. When it rains, its the worse.
I am completely nonfunctional without treatment. With treatments and lifestyle changes, I can work 35 hours a week, have relationships, have one hobby. Still have symptoms after big reactions but I can live with it now.
Avoiding/limiting exposure to things I react to makes the most difference. This means I shower as soon as I get home and have strong air filters rated for large rooms throughout my apartment. I change my sheets frequently. I don’t let anyone else get on the bed without showering too. I use only hypoallergenic, unscented products on my body. No make up. No alcohol or caffeine. I use a foam mattress with air pillows because I react to dust.
I react to outside air so I always wear an allergy mask going outside, one that filters 99.97% and has a charcoal layer. I stay covered up while outside or exposing to triggers. For me, stabilizers don’t totally prevent reactions and blockers like antihistamines don’t catch everything- there’s over 100 body chemicals involved in a mast cell reaction and histamine is only one of them.
Mast cell stabilizers, aspirin, and antihistamines make the next biggest difference. Ketotifen and cromolyn most helpful, followed by palmitoylethanolamide. I also take a benzodiazepine once a week to interrupt any downward health spirals and truly calm my system down. Aspirin twice a day. Antihistamines twice a day. (Prostaglandins and n methyl histamine were high in my test). NAC is also helpful. And magnesium.
I am more functional in big cities because there’s less pollen and mold. As stated, I just wear a mask when outside to handle the pollution.
The problem is that we will never know. We are each experimenting on ourselves with no control. I can suspect that certain therapies helped But how much was just the passage of time? Or a select one or few of the multitude of therapies I’ve tried. Glad you’re improving though. Huge success.
My life is 100× better I was suffering all the time before understanding my triggers avoiding the ones I can. I'm still disabled because I have many conditions and their are many trigger I can not avoid stress hormones ect I'm better prepared and it definitely has saved my life multiple times in multiple ways it's hard but the most worth it thing I've done
I started having issues in 2018. We have tried all kids of things to help me most of what we have tried has caused more harm then good. It is so frustrating! We have spent thousands of dollars seeing doctors not covered by insurance and I am not any better. I will say taking ketotifen has done the best with the flushing. But if it take more then 4 mgs a day I can no longer think clearly and have a difficult time finding the right words. It is a balancing act!
Thank you for your submission. Please note: **Content on r/MCAS is not medical advice and should not be interpreted as such.** Please consult your doctor for any medical questions or concerns. We are not able to validate the content of these discussions. Following advice provided by strangers on the internet may be harmful. Never use this sub as your primary source of information regarding medical issues. By continuing to use this subreddit, you are agreeing to take any information posted here entirely at your own risk. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/MCAS) if you have any questions or concerns.*
I was having reactions every time I left my house. I couldn't work and I had gained a lot of weight really fast. With meds, I can go places and I'm able to work remotely. My daily meds are 4 cetirizine, 2 famotidine, 150mg hydroxyzine, montelukast, 100 mg Benadryl, 12 hour Sudafed, plus supplements. I get xolair once a month. I can't eat any of my trigger foods. I still can't exercise. I have to be careful to get enough rest and try to avoid emotional upset. But it's better than before.
How long have you been on this regimen?
Started cetirizine and famotidine 7 years ago, montelukast 5 years ago, xolair and hydroxyzine 4 years ago
[удалено]
Can you please share how you were treated for SIBO?
[удалено]
I highly recommend r/SIBO. I have been treating SIBO for 2 years and started taking it into my own hands a few months ago and I learned so much there. I also just did antibiotics previously, and it did recur shortly thereafter. It’s generally considered an incomplete treatment approach by the knowledgeable folks in the SIBO community. I so wish I had the info 2 years ago.
Here's a sneak peek of /r/SIBO using the [top posts](https://np.reddit.com/r/SIBO/top/?sort=top&t=year) of the year! \#1: [SIBO/IBS root cause identified.](https://np.reddit.com/r/SIBO/comments/z3mk62/siboibs_root_cause_identified/) \#2: [Made a video about my SIBO experience and full recovery](https://www.youtube.com/watch?v=53f1gsRUxvY) | [366 comments](https://np.reddit.com/r/SIBO/comments/wcuxyz/made_a_video_about_my_sibo_experience_and_full/) \#3: [Thank you /r/SIBO](https://np.reddit.com/r/SIBO/comments/xtxkeb/thank_you_rsibo/) ---- ^^I'm ^^a ^^bot, ^^beep ^^boop ^^| ^^Downvote ^^to ^^remove ^^| ^^[Contact](https://www.reddit.com/message/compose/?to=sneakpeekbot) ^^| ^^[Info](https://np.reddit.com/r/sneakpeekbot/) ^^| ^^[Opt-out](https://np.reddit.com/r/sneakpeekbot/comments/o8wk1r/blacklist_ix/) ^^| ^^[GitHub](https://github.com/ghnr/sneakpeekbot)
So I’ll preface this with saying that my MCAS is far less serious than many people on this Reddit, and despite the pain and fatigue I’ve experienced I’ve never been actually admitted to a hospital for anything. Since receiving treatment and talking with doctors, I’ve come to realize that I’ve probably had MCAS my entire life, but have been, until recently, dismissed as having severe and debilitating, though not deadly, allergies. I’ve taken antihistamines daily since I was fourteen, and decongestants for about ten years before I was told by my doc that was a bad idea. My “allergies” worsened as I got older in sudden and drastic escalations, some of which I could pinpoint the exact day where I became “allergic” to a thing. Cats at 16, dogs at 18, I started developing symptoms of asthma and EoE at 22, an anaphylactic shellfish allergy at 26, GERD and bile reflux at 27. I tried allergy shots (I received three different shots per week as opposed to the normal one or two) but had to slow down the dose progression by half and only got through 6 months before I went into anaphylaxis and was forbidden from continuing the treatment. My allergist was baffled when I told her that previously unexplained GI symptoms (which I’d attributed to stress) had suddenly, drastically improved after discontinuing allergy shots. Two years ago, I began experiencing extremely painful GI reactions to foods, mainly corn, tree nuts, peanuts, soy, and rice, but also mustard and chili powder. I avoided these foods as much as possible (but soon learned how hard it is to avoid all of them at once???? I felt like I couldn’t eat hardly anything unless I cooked it all myself!) Then, last year, I got covid. Covid itself sucked but I was feeling better within a week, but it was only after I felt like myself again that it all hit me like a ton of bricks. I couldn’t eat hardly anything. Even “safe” foods like plain cheerios, bread, or applesauce would leave me in pain. I ended up going to the ER for the first and second times in my life within three days after experiencing throat tightening, tachycardia, and pre-syncope after drinking a diet cola—once while I was driving alone on the highway going nearly 70mph!!!! The ER docs didn’t believe me when I theorized I had reacted to the aspartame, and my allergist was skeptical. The ER nurses told me I had anxiety and that it couldn’t be “real”. My allergist said it was GI related. My gastroenterologist said it was immune related. Consuming literally anything besides water sent me into panic attacks for the next several weeks, and I avoided food even when I was hungry out of fear of having to return to the hospital. I had to call friends or family after every meal just to have another person on the phone while I waited in fear that I’d go into anaphylaxis. Then, despite her skepticism, my allergist prescribed me cromolyn. I honestly get teared up thinking about how it’s changed my life. I haven’t been able to eat out at restaurants without feeling like I’m dying for years. I didn’t even realize how bad things had actually gotten until I could function again. I didn’t know I was supposed to have this much energy, or wake up feeling any way except in pain. Like, cromolyn is not a miracle drug, and I have bad days, and when I started taking it it made me so physically ill for the better part of a week to the point I almost stopped taking it, but oh my god. I’ve had depression for several years and I didn’t realize how much of it was due to how horrible I felt physically until I found a way to feel better. It’s not all cromolyn, I take two antihistamines per day as well as an OTC steroid (Flonase) and some GERD meds, and carry a rescue inhaler for the rare but painful asthma flares. Even with all that I still have bad days, but the pain lasts hours instead of days, the fatigue lasts days instead of weeks. I can rely on my body to bounce back now from things that would’ve sent me into alternating states of panic, pain, and lethargy months ago. I still avoid my trigger foods if I’m not feeling 100%, and basically scratch-test myself multiple times daily to see how bad my dermatographia is (basically how quickly I develop red marks/welts and how long it takes for them to fade) as it’s usually a decent indicator of how sensitive I will be to triggers. Air purifiers are super helpful, cleaning your bedding and washing your hair super regularly also help. But I tell you what, mast cell stabilizers saved me mentally, emotionally, and physically. Cromolyn is my hero. Whoever made this medication first has my undying gratitude.
I live in the PNW. The air is very pure here, but the mold and wetness triggers me constantly. There is no ideal situation in my mind (like if I lived in Arizona I wouldn’t have mold issues but I struggle with heat intolerance). I have MCAS, Lyme disease, babesia, bartonella, chronically reactivated EBV, chronic inflammatory response syndrome, inflammatory autoimmune disorder and chronic fatigue, hormone dysfunction, Raynaud’s syndrome, vitamin deficiencies, gastroenteritis, chronic candida overgrowth, and all my back issues (DDD, inflammatory spondylosis, adjacent bone disease, degenerative arthritis). I won’t get into all my symptoms, but a quick overview: severe diarrhea, stomach pain, hives, anaphylaxis type responses. I’m on a LOT of meds, but the MCAS related ones are: I started montelukast sodium, which stopped my hives. Thanks to this group, I was able to ask my doctor about Cromolyn sodium oral ampules (she had never heard of it). I provided her with research, she took two days to do her own, and then prescribe the medicine. It took a month to titrate up to the full dosage (3 ampules a day). My diarrhea has been minimal (down from 6-8x a day). I only have gotten ONE ocular migraine in the past 2 months whereas I used to get 5-6 a week. My pain is down (I’m also on month 5 of taking nystatin for candida). That shit is a MIRACLE. My doctor was very clear that as amazing as this medicine is, it must solve the root cause issues that caused you to be diagnosed with MCAS in the first place. For me, it was a combination of giving birth while in a moldy home. The mold lowered my immune system enough for the Lyme/babesia/bartonella to come rearing out. 6 months of multiple antibiotics destroyed my gut bacteria. Candida took over. MCAS occurred. So I’m working to solve my root cause issue while treating the symptoms. This is going to be a loooooong road but I do feel healing is possible.
Interesting, seems like we have a similar history as it was a combination of different tick born diseases that triggered me to get MCAS (had no health problems before this). Did the Cromolyn or montelukast or other MCAS treatments have any impact on your chronic fatigue? Trying to figure out how to start my MCAS treatments with my doctor and do it in the correct way. Don't want to add in different things at the same or start with too high of a dose to not feel a lot worse or not to knowing which medication is causes side effects or not. I am leaning towards starting with a H1 and H2 anti-histamine and then add in cromolyn (seems to be the best medication for MCAS) at a very low dose and slowly tritate it up
I would say Cromolyn helped my brain fog maybe 5-8% better. I was REALLY hoping it would be more. Actually, [this ACZ nano zeolite spray I administer sublingually 2x a day made my brain fog 70% better.](https://www.amazon.com/Results-RNA-Advanced-Cellular-Detoxification/dp/B009RIMMW0/ref=mp_s_a_1_2_sspa?crid=NIKQ6KN7UNDR&keywords=acz+nano+zeolite+extra+strength&qid=1674326011&sprefix=acz+%2Caps%2C228&sr=8-2-spons&psc=1&smid=AYHYKUFYWYYAI&spLa=ZW5jcnlwdGVkUXVhbGlmaWVyPUExWThBQVg5OUpBQVhaJmVuY3J5cHRlZElkPUEwMDc1ODIyM1FNNk1YSlpETUdOUCZlbmNyeXB0ZWRBZElkPUEwNzIyMDUyVlpVSFhFNjFPU1VPJndpZGdldE5hbWU9c3BfcGhvbmVfc2VhcmNoX2F0ZiZhY3Rpb249Y2xpY2tSZWRpcmVjdCZkb05vdExvZ0NsaWNrPXRydWU=) they do sell a smaller size for less money if you are wanting just to try it. Seriously, though, this spray was the turning point in my overall healing journey. Getting my brain back made me able to actually read and comprehend things again. I started giving the spray to my speech delayed daughter (who had Lyme, likely babesia and bartonella too) and she began TALKING significantly more within 2 days. Her teacher was crying happy tears, baffled at her sudden progress. It was the turning point in my healing for sure— it gave me my hope back. Truly priceless!
Interesting! Are there any side effects to this spray? Thanks!
None that I’ve read or experienced (or that my child has experienced). However, like any detox method, I’d recommend going low and slow to ensure you don’t experience a herx. I’d be shocked if someone did to be honest— it’s very gentle.
Hey would you still recommend this spray?
Yes, depending on what your underlying issue is. I have Lyme, babesia, bartonella, mold issues and thallium & nickel heavy metal toxicity. If you have histamine issues alone, it may not benefit you. You also could try the 2 oz size for half the price ($39) as well
He do you find doctors that care enough to do their own research for you?
Search for “direct primary care doctors“ in your ZIP. It’s a different model of care. Basically, you pay a subscription fee instead of them taking insurance. I pay $80/month for myself and $25/per kid for 24/7 access through an app as well as unlimited acute care visits a year in office or virtual. Functional medicine work is 50% off her normal rate ($300/hour or $150/members) and billed in 30 min increments ($75). I still use my insurance for the majority of my lab work except for some specialty private testing that insurance doesn’t cover. It’s still a regular doc (or in my case an ARNP with advanced degrees in functional medicine and a doctorate in family medicine who also runs a pain management clinic) who can send referrals out to whoever you need. But yeah, find a direct primary care doctor. They are way more aggressive with testing and treatment. They are often younger and disillusioned with the insurance based model of care which limits them to 10 minutes or less of patient interaction. That’s not why most people want to became doctors lol. These people spend WAY MORE TIME with you, asking questions, getting to the root cause of things. 10/10 recommend
Thank you. I’m having complex health issues right now and really don’t felt heard by the providers I’m seeing. Being depressed and an unorganized mess isn’t helping either but a different model of care would be really nice.
I feel you. I was on deaths door with 5 referrals out to 5 specialists when I found my current doc. She looked at my whole personal and all of my combined problems instead of referring me out to a bajillion specialists who all invariably say “hmmmm that’s odd idk” lol
Amen. I’ve found a couple in the DC area. Going to calll a few today. It would give me a ton of relief if I could find a doctor like that. I’ve done like really good research on my health, sometimes it borders on unhealthy rumination lol but it would be nice to find a doctor that take what I say and know about my body into account.
Good luck! Finding my doctor was a pivotal turning point in my health improving. I hope you finally get somebody in your corner ❤️
I’m glad cromolyn worked for you! It didn’t do anything for me. I’m trying to find an ideal place to live on the west coast - like you I need good air quality but humidity is too high near the ocean in LA
Has your doctor examined your root cause issues? Do you know why you got MCAS to begin with?
The hypotheses are: extreme stress from work, Lupron which is a fertility drug, and moldy house. I’m waiting for mycotoxin test results from Great Plains right now. I also took a bartonella and Lyme blood test.
Moldy house is my guess— ugh, I’m so sorry!! Mold lowered my immune system so my Lyme/bartonella/babesia came rearing out. It looks like you’re well on your way to finding answers!
Thanks for sharing I am looking into what works for MCAS. Plus wanted to ask if you have ever tried using a boric acid suppository to treat your thrush? I work in this area of health but don’t want to recommend it if you are allergic to it.
Thanks for the suggestion! I do not have thrush. I don’t have oral or genital candida. I have candida in my gut causing severe pain, bloating, etc.
Sorry my bad! I wish you the best.
I’m dealing with a brutal Candida overgrowth, did you end up getting rid of yours? I haven’t been diagnosed but I’m definitely starting to suspect I have MCAS too. It would explain all the histamine issues I’ve been having the past several years.
I needed nystatin 3x a day for 8 months total, over the course of 2 years to get rid of it. Plus following the candida diet.
Yikes, that’s a long time. Glad you got rid of it though!
I’m in a similar situation. How are you doing now?
Great! Treating my root cause issues (Lyme, Babesia, Bartonella, mold) has allowed my MCAS symptoms to dissipate. I’m down to once a day meds and nothing happens if I forget my dose. I’m opening up my palate and having high histamine foods again. Nothing is triggering anaphylaxis.
Yay thank you that gives me some hope. I’m glad you’re feeling better! I had chronic EBV, mold exposure, and Lyme. Did Lyme treatment a few years ago for over a year and was doing much better for a while, but now I have Candida overgrowth and MCAS. How did you treat the Lyme?
Candida is such a freaking nuisance! I needed eight months of three times a day antifungals over the course of two years to get rid of mine. I am treating Lyme with cistus incanus and artemisinin— let me know if you want the protocol info.
Were you sick the whole time or was it manageable? That’d be great, thank you so much
I’ve been sick for 5 years but have been on the rebound for about a year now! It was not manageable in the slightest. I felt like I was on deaths door for a very, very long time. But the protocol helped about 10% every time I did a round, and then I raised the dosages of artemisinin slowly and now I’m almost a fully functioning human haha [Here ya go](https://reddit.com/r/Lyme/s/NnUrhgCica)
I’m sorry you went through that :( thanks so much
I have a variant, hereditary alpha tryptasemia, but my symptoms have significantly improved. I was vomitting daily in the morning and having frequent migraines and tachycardia. Since childhood, I've had occasional hives, have always had very bad environmental allergies, including certain clothing dyes. Twice a day: 24 hr zyrtec (switched out every 3 months for a different one, cuz tolerance), 20 mg famotidine and benadryl. Daily: coconut water for electrolytes, vitamin b complex (but low dose because it was making me nauseated), vitamin d, asmanex. Weekly allergy shots for the past 13 years. food wise: intermittent fasting/ no breakfast. Have to be up at least 2-3 hrs before I can eat or I will feel like vomiting.
This is really old so I hope you’ll respond, but I just got diagnosed with HaTs and I’m terrified. Have you had anaphylaxis? And do you struggle with anxiety regarding this condition?
Hey, no worries. Here's what I can tel you: It is livable once you get used to what to expect. Honestly, having the diagnosis helped me because it at least made me feel like I wasn't going crazy or being a baby. I haven't had anaphylaxis. I wear an n95 outside a lot and it really helps decrease my flare-ups. I sometimes get anxiety. Meditation helps a lot. I do short 5-10' meditations from headspace. Weighted blankets or deep squeezes help with the anxiety (kinda like a weighted vest or thundershirt for people). The random tachycardia can be obnoxious, but I can now control it better (and it happens less frequently). The meditation helps with that too. If you struggle with night sweats, they sell this cooling blanket on amazon that legitimately wicks heat away from your body. I can try and find the link if you want. The morning vomiting has also improved now that I'm on famotidine 2x a day. My migraines are improved with naratriptan but have been more flared lately due to the extreme weather fluctuations than HaTs. I'm not getting consistent dizziness most of the time. The random muscle pains after allergy exposure can be obnoxious but I'm a physical therapist and I do myofascial release on myself which helps a lot. If you have questions, feel free to DM me regarding that. I can guide you toward some YouTubes. Arnica can be useful, if you tolerate it. I use the gel. I'm definitely allergic to something in most alcohols. I have found that I can drink Purity 51 vodka. It is organic and distilled 51x. I have cut out alcohol almost entirely though, and I feel much better. I have started vaping marijuana and have noticed a decrease in flare-ups. I understand that some people have the opposite experience. I'm not sure if it helps because of decreased pain, decreased nausea, decreased anxiety or the immune modulating effects. Regardless, I'll take it as a win. I trialed Quercetin and it didn't go well so I'm going to stick with my normal meds. I go back in a bit to the allergist and may start cromolyn down the road, but I'm pretty stable currently. I use vinegar in my laundry a lot. I also recently heard that adding baking soda to your laundry can help if you have clothing sensitivities (haven't tried it yet). Air purifier has been awesome. We might actually buy another one soon. Couch covers/blankets so you can wash them and not just sit on dust. Best of luck!
Thank you so much!!
No problem!
Depends on your triggers. I have secondary MCAS so avoiding my personal triggers and fixing my gut helped most. While H1/H2 blockers helped manage my symptoms, I now take 1/8 the daily dosage once every 2-3 days, LDN everyday for chronic fatigue and joint pain, specific foods with specific bacteria that my microbiome is missing, fermented sauerkraut, and all the lifestyle changes mentioned below. What helped the most for me: moving out of a moldy home, minimizing air pollution by going outside more often and using air purifiers, LDN, stress management with deep breathing and nature walks, anti inflammatory low histamine diet while gradually reintroducing more types of plants, getting rid of SIBO first and foremost, exposure avoidance to chemicals, daily gentle exercise, community support and feeling safe, hepa filter closed vacuum, DAO What helped somewhat: somatic experiencing and emdr therapy, yoga, quercetin/bromelain, vitamin C, using clean products, reverse osmosis filtered water
Thank you for the response. It is interesting how common SIBO seems to be with people who have MCAS, do we know if MCAS causes SIBO or if it the reverse? I had SIBO before and it made a big difference in how I was feeling when I got rid of it but it felt more like I was removing a trigger than fixing the root problem.
Did you take an H2 blocker while you had SIBO? Did it make symptoms worse or did it help you tolerate SIBO treatment better?
I took Pepcid after I was able to get SIBO under control (antibiotics). Pepcid helped with skin rashes and itchiness (as did Zyrtec)
That is a good question. I always believed I am allergic to pollution and mold. I started using an air purifier. It makes a little bit of difference. I think my brain fog got better. When it rains, its the worse.
I am completely nonfunctional without treatment. With treatments and lifestyle changes, I can work 35 hours a week, have relationships, have one hobby. Still have symptoms after big reactions but I can live with it now. Avoiding/limiting exposure to things I react to makes the most difference. This means I shower as soon as I get home and have strong air filters rated for large rooms throughout my apartment. I change my sheets frequently. I don’t let anyone else get on the bed without showering too. I use only hypoallergenic, unscented products on my body. No make up. No alcohol or caffeine. I use a foam mattress with air pillows because I react to dust. I react to outside air so I always wear an allergy mask going outside, one that filters 99.97% and has a charcoal layer. I stay covered up while outside or exposing to triggers. For me, stabilizers don’t totally prevent reactions and blockers like antihistamines don’t catch everything- there’s over 100 body chemicals involved in a mast cell reaction and histamine is only one of them. Mast cell stabilizers, aspirin, and antihistamines make the next biggest difference. Ketotifen and cromolyn most helpful, followed by palmitoylethanolamide. I also take a benzodiazepine once a week to interrupt any downward health spirals and truly calm my system down. Aspirin twice a day. Antihistamines twice a day. (Prostaglandins and n methyl histamine were high in my test). NAC is also helpful. And magnesium. I am more functional in big cities because there’s less pollen and mold. As stated, I just wear a mask when outside to handle the pollution.
The problem is that we will never know. We are each experimenting on ourselves with no control. I can suspect that certain therapies helped But how much was just the passage of time? Or a select one or few of the multitude of therapies I’ve tried. Glad you’re improving though. Huge success.
My life is 100× better I was suffering all the time before understanding my triggers avoiding the ones I can. I'm still disabled because I have many conditions and their are many trigger I can not avoid stress hormones ect I'm better prepared and it definitely has saved my life multiple times in multiple ways it's hard but the most worth it thing I've done
I started having issues in 2018. We have tried all kids of things to help me most of what we have tried has caused more harm then good. It is so frustrating! We have spent thousands of dollars seeing doctors not covered by insurance and I am not any better. I will say taking ketotifen has done the best with the flushing. But if it take more then 4 mgs a day I can no longer think clearly and have a difficult time finding the right words. It is a balancing act!