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Posted 10/18/2021 8:45 PM (GMT 0)
I am looking for help with how to stabilize MCAS. I am currently taking turmeric to help, but it simply isn't enough. I have thought about trying a second dose of it in the evening, but I want to get other ideas. I have heard that dosing with Quercitin is one of the most effective natural treatments, but I want to hear what others think. I could always try an H1 or H2, I am open to it, but trying to keep it as natural as possible. Tomorrow I have an appt with my doc to discuss the possibility of getting on valium as it is pretty much the only thing that will help clear up most of my issues. Everything from helping stabilize MCAS, the never-ending anxiety/frequent panic from the CIRS/Mold and Babesia. The random sneezing, the stiffness that goes into my right arm and certain parts of my body, and the dreaded vertigo. All of this can be assisted with the use of a benzo. I do not like drugs like these, and I plan to use them as lightly as I can for when it gets tough. I am not even sure I will take it, and if I do, not sure how often. The point is, I just want have these thigns by my side. I rather get this under control because it feels like I get reactions from everything. I am very lucky not to actually go into shock from this stuff, but sometimes I feel like I go completely stupid and lose it and feel like a mental nutcase.

Help? Any ideas? I am listening.
Posted 10/18/2021 9:07 PM (GMT 0)
I understand that you might want to use benzodiazepines for other reasons, but for MCAS, you have many other options that do not cause dependency or long-term risks.

Curcumin or turmeric is a good start, and a great anti-inflammatory in general, but my impression is that most people need to do more than just that for MCAS. Managing triggers also should not be overlooked. Are you still being exposed to mold? Are you reacting to other things in your environment- cleaning products, temperatures, exertion, allergens? Under a lot of stress? Ingesting high-histamine foods or supplements?

Quercetin is a great natural mast cell stabilizer. Bromelain is also good. I like Solaray's QBC Plex, which is a combination of quercetin, bromelain, and vitamin C. D-Hist is another formula to look into. DAO is taken for histamine intolerance. Stinging nettles can be helpful, and they make a nice tea, which I like to sip on days that my mast cells are being rambunctious. CBD and other cannabis products can be helpful but pricey.

Over-the-counter H1 and H2 blockers are helpful for some people, too, and are easy to acquire. Doctors tend to emphasize these because they are easy to find, inexpensive, and most familiar in mainstream medicine. NSAIDs including aspirin can be used as well.

If you are interested in prescription options, and have a provider to prescribe them, then ketotifen, Montelukast, and cromolyn sodium are options. I almost never use drugs, but I am quite reassured by having a stash of cromolyn sodium for gastrointestinal MCAS flares! It works almost instantly for GI symptoms if you can get the liquid ampules, but is only slightly absorbed into the body, so it's not great for other types of MCAS symptoms.

Dysfunction in the limbic system can contribute to MCAS as well, so limbic system retraining programs like Gupta and DNRS can make a big difference.

I hope you find some options that work well for you!
Posted 10/19/2021 12:12 AM (GMT 0)
I have always hated antihistamines, so I was reluctant to try them, but I found Zyrtec to be quite tolerable and helpful.

I only took Famotidine once or twice, as I worry about it causing intestinal yeast to go wild.

I have taken the following for MCAS. It’s trial and error, though. Just because something didn’t help me doesn’t mean it won’t help someone else.

- AllerDHQ - helped

-NeuroProtek - had throat pain every time I swallowed one, like my body was rejecting it

-DAO enzymes - did nothing

-Cromolyn sodium - helped a little

-Xyzal - easily tolerated; not sure if it helped anything or was just placebo, as I started it with other things

-Zyrtec - helping

-Vit C - helpful if I take a lot - like 1g every 30 min to an hour

- TUDCA - immensely helpful at first (at least 2 months); does something to histamine, but I am not scientific enough to understand or explain; also helps liver perform detoxification better (win - win)

———-
P.S.

When it comes to treating MCAS, more is better and CONSISTENCY is key. You can’t just “try” something once or twice and say it doesn’t work. I would try at least 3 methods simultaneously and consistently - H1 blocker, anti-inflammatory supplement mix, and something for the gut (ex - TUDCA, DAO, H2 blocker, Cromolyn sodium).

It will take a couple of weeks of consistent treatment for symptoms to really calm down. DON’T STOP at that point. Continue treating MCAS. Once you are stabilized, if you are unsure what’s working and what isn’t, you could drop one treatment for a week and see if you notice any difference. Only drop one at a time.

Once you have a good treatment that’s working, stick with it as you start your mold detox and Lyme/co treatment. It will help you tolerate those treatments.

Post Edited (WalkingbyFaith) : 10/18/2021 6:19:38 PM (GMT-6)

Posted 10/19/2021 10:03 AM (GMT 0)
DNRS, quercetin, and removing stress triggers have helped the most for me with MCAS.
Posted 10/19/2021 12:58 PM (GMT 0)
Have you been screened for Celiac Disease??

Again, it has a lot of symptoms that mirror Lyme.......

Rob
Posted 10/19/2021 4:49 PM (GMT 0)
Quercetin, Curcumin, Taurine, Magnesium threonate. EFA

(Recommended by my llmd )
Posted 10/19/2021 4:56 PM (GMT 0)
I’d recommend dnrs as well.

I noticed you have an ankolysing spondylitis diagnosis, did you get that under control?
Posted 10/19/2021 9:10 PM (GMT 0)
Before I read any of this - does anyone else have crazy bad tremors after eating pretty much anything? That is the reaction I have to pretty much everything. Tremors, anxiety, lose feeling in my right hand/arm, and vertigo.
Posted 10/19/2021 9:13 PM (GMT 0)
Okay I am repsonding somewhat backwards so please excuse me for the randomness. I am all over the placecurrently.

dcd2103 - how would I get ankolosis apondylitus under control? My docs never really said anything. I just have it lol. I mean, that is mainly associated with "back pain", the common diagnose and get some pills for it. At the time, I was given Soma, which I never took more than a couple ever.
Posted 10/19/2021 9:18 PM (GMT 0)
Girlie - I currently take 500 mg of turmeric daily and might increase soon. I was prescribed Quercitin as well, gonna try 250 mg tonight and see how it works. I hope it helps calm these flares after eating. I wonder if I will get lucky with it and then I can take 250-1000 mg up to 4 times a day. That would be so great. I am having a hard time with eating anything and everything. I am truly screwed up. I understand the MCAS probably stems from the Babesia and mold, so once those are done and away with, hopefully, this will leave for good!

I am gonna keep Taurine and Magnesium Threonate in mind, but I already use Mag Glycinate at 200 mg so I may need an increase there as well, possibly. Do you use this throughout the day? How do you take these and what gives you the msot relief? What's EFA? Unless that is going right over my head...
Posted 10/19/2021 9:22 PM (GMT 0)
RobWireGuy - I was going to be, but then again, how would I do betetr than I already am with diet? I eat cleaner than... well... everyone. I mean actually clean too, not the "I eat this brand of this, etc." I eat real true whole foods and only 1 ingredient foods. Bread is not a health food lol. That is not to you, it is to others. I am actually going to school for Nutrition Biochem. I have said this and I will say it again, they do not teach us a lot of this stuff. I know things, but I don't know the things that we should know. I am still learning myself as well.

Also, if those symptoms mirror Lyme, I would assume it is Lyme then. Or Babesia, mold, etc. I mean I know that, but I mean these reactions come from the mast cells release. They are just trying to defend me, but of course they are going overboard, clearly lol.
Posted 10/19/2021 9:25 PM (GMT 0)
Deep_sleep - I actually have no stress anymore, other than these health issues. I mean, I have them 24/7. A symptom always hitting me hard. I havent stopped shaking, having anxiety, having vertigo, etc. for 5-6 months. No exaggerations. As in 100% straight without stopping. So I can only hope that Quercitin and DNRS would help. Nice to hear they worked for you!
Posted 10/19/2021 9:30 PM (GMT 0)
WalkingbyFaith - thank you for all of this. I will keep all of this in mind as well. I will still try these things out as I wanted a list. I know everyone is different, but who knows. I am not even 100% what this is. I just know my reactions are REALLY BAD. I never go back to "normal" and have not felt "okay" since May 14, and on May 15, I went to another world. With that depersonalized feel, and 30+ other random symptoms just like that. So after doing a crap ton of juicing and losing... 40 something pounds, I am "healthy" in the sense of what I eat but I also feel just if bad, if not worse. Things have not really changed. So my need for wanting to gt at least SOME relief is huge.

Also, I believe you mentioned TUDCA before, yes? I wonder why this is praised? Lol. I would be willing to give it a try. I am just in full anxiety/panic all of the time and afraid to try anything. I separate people like this though...

1. People who are actually bedridden and have constant crushing anxiety and 30+ other symptoms. This is me.

2. People who have symptoms but walk around and can do things. Like, they have bad stuff, but it comes and goes. This WAS me for a long time.

I am not #2 lol. I simply cannot actually function. So text might be hard to describe this stuff, but I am always wondering just how bad some people are. I get confused because years ago I had some of these issues and I guess I may have just left all of it untreated for a while. I truly hope things turn out for the better. I know that I have to treat this!
Posted 10/19/2021 9:48 PM (GMT 0)
Saraeli - I react to everything. Like, I don't get to a point of calm enough to know what the triggers are. I am having a hard time figuring it all out. I also have zero help and a lot of "mindless" people around me. Nothing against my friends or family, but no one told me that my skin gets red or notice things when they are around me. It has been 5 months since this started and I am just noticing this and then people will say "Oh I noticed that before, thought you knew, that kinda thing. Which drives me mad. Who does that? I am so sick. No flu or anything like that, but this CNS stuff is really taking over me. I used to be on benzos but I got well again. I had considered the idea of a "setback", but now that I know what I have, this just makes the most sense. Babesia and mold, it just feels like it's taking over me and it has been covered up for so long. I cannot get relief from anything and I need to eat too. My diet has been lacking this week, consisting of mainly 3 eggs with bell peppers every morning (I have switched this up but this is going okay right now with least problems), and also I eat broccoli and brussel sprouts that help as well. Gonna try cauliflower soon too, it's been a bit. I mainly only eat this stuff anyway. I am not a huge fan of olive oil and such, as it is promoted as a health item when in reality it is not very good for the heart long term, but I do think if you are sick a tbsp a day is okay. The benefit outweighs the bad!

With that said, I know how bad benzos can be but my doc did prescribe them to me today. I basically told him what I wanted and he was open to it, as my request was reasonable. I mentioned that I just want them by my bedside if I need them, but I plan to try things like quercitin first. I do take turmeric now. I may have to increase from 500 mg to 1000 mg, as in doing 500 twice a day. I am not sure. Maybe I do need to try the quercitin. Even foods like blueberries cause me hell. They are not only low in histamine but contain quercetin, but I still feel like I am gonna go into panic. Could be the sugar, who knows, but I just had a handful 15 minutes ago and I am shaking like crazy. Anxiety through the roof, etc. I just hope my case isn't much worse than many others. I am screwed up, I know this, but I hope my body can return back to the way it was before this, at the very least. I was doing so much with my life. I have so many things I need to do! Ugh, just frustrating.

All of this was very helpful, all of these posts were. Thank you!
Posted 10/19/2021 9:51 PM (GMT 0)
Thank you all for the help everyone. I should mention that although I did get those meds, I won't use them unless it gets to a point where I feel on the break of "insane" which has happened a couple of times. For now, I will stick to the turmeric 500 mg a day and try quercitin tonight, hoping it helps. I am gonna make a note of all of this stuff as well.
Posted 10/20/2021 4:21 PM (GMT 0)
Most meds, supplements, and even vitamins have potential side effects. You have many other options that can help stabilize the MCAS that you can try now, but if they do not help you, then don't hesitate to use the benzos again.

When you are in an MCAS flare, sometimes you will react to anything you ingest until the flare passes - even water. It's so frustrating because obviously no one can go a month without eating or hydrating! A close friend was sent into a terrible MCAS flare by poison ivy, and anything she ate or drank made her feel anxious and then sleep. She just didn't eat or drink anything until evening, and then tried to cram in as much as possible, so she could function slightly during the day. She stuck with water and white rice for the first two weeks. By week three, she could tolerate seaweed and sour cherries as well. By week four she added in sweet potatoes. I think it took about two months before she could eat and drink normally again, without ending her day! An MCAS flare can make you feel like you're absolutely losing your mind, and it can be self-perpetuating for a while, too, especially if ingesting things is one of the triggers!

I know it's so, so difficult. We're rooting for you, Forest. There is an end to this.
Posted 10/22/2021 6:15 AM (GMT 0)
I'm a little late to this thread, but depending on your symptom severity and frequency, I would encourage you to consider trying cromolyn sodium! It can be life changing, and isn't a typical pharmaceutical in that there are virtually no side effects that I'm aware of (aside from possible mast cell flares, which eventually die down). It's literally been the difference between me being disabled and now being able to almost go through a whole day not thinking about how crapty I feel 24/7 (almost). It's supposed to only have action in the gut, but many folks anecdotally notice it improves systemic symptoms (including myself). I have decreased overall body pain, reduced bloating/distention after eating/ sore throat/ neuropsychiatric symptoms, and more. The thing is, if every single thing you are putting into your body is causing a whole-body cascade of inflammation and symptoms (and sometimes even reacting to the process of digesting!), naturally reducing that is going to help your entire system settle (in my non-medical opinion). It isn't a cure-all, and I flared massively when starting it. Had to titrate up by 25mg (1/4 capsule) every 1-3 weeks. Started in May and only just got up to a full dose end of Sept because of flares (but I knew it was working because in between flares I felt way better than I had in years). Ketotifen works for some and not others - you know pretty quick (didn't work for me). I understand the hesitancy of h1/h2, I have to say I am not on those yet, though I will be trying some soon (I don't really get why that's the starting point for doctors rather than CS but I'm an example of someone who skipped h1/h2 and made great strides). Otherwise yes, quercetin helped keep some aspects of my symptoms at bay for many months before I was able to get cromolyn prescribed, it is awesome. It helped with more typical allergy type symptoms - runny nose, etc. But quercetin and curcumin were not nearly enough for me, and I would dare to say it wouldn't be enough for most people with mcas, at least if it's moderate like mine.
Posted 10/26/2021 11:04 PM (GMT 0)
I also have reactions to anything to do with the immune system and haven't been able to detox mold or treat Lyme. I am now taking Nalcrom (Canadian version of Sodium cromolyn) and ketotifen. Both of these drugs have helped me so much. I can eat things I haven't been able to eat in years and they helped with the neuropathy in my arms (Mast cell symptom). I still have to introduce supplements gradually but can now tolerate B12, magnesium oxide and vit D which I couldn't before. I react to Quercetin so that wasn't an option for me. I am currently slowing introducing activated charcoal for the mold toxins. I also used cannabutter (cannabis infused coconut oil) which I take before bed. It is also a mast cell stabilizer and was the first thing to help me. It stopped the weight loss, insomnia, and depression.
Posted 10/27/2021 12:51 AM (GMT 0)
dmw52, it's interesting to hear that cannabis is a mast cell stabilizer. I have always reacted really poorly to it, and I wonder if it might have been a stabilization flare, similar to what happens when you start nalcrom/cromolyn. I am also on Nalcrom and I had to titrate up SO slowly because of the flares I got (but it has similarly helped me immensely, as I state above!), so I might be super sensitive to those meds, perhaps. Do you have any info or further reading on where you heard about it as a mast cell stabilizer? I'm wondering if it might be worth trying again now that I'm a little more stable from Nalcrom, but it's also never been that pleasant of an experience so I'm not sure I'll risk it. Something to consider though.
Posted 10/27/2021 1:27 AM (GMT 0)
Morningstars....A leading Mast Cell Activation Syndrome expert Dr. Afrin shares his experience with patients who use Medical Cannabis to help with their mast cell disease symptoms in his book Never Bet Against Occam.

“The mast cell surface features (inhibitory) cannabinoid receptors, making me wonder whether at least some of the chronically ill patients out there who claim that the only thing that makes them feel better is marijuana might be unrecognized MCAS patients in whom THC’s binding with the cannabinoid receptors on their dysfunctional mast cells leads to a quieting of the activity of those cells and thus a lessening of symptoms.“

https://ibcnj.com/medical-cannabis-mast-cell-activation-syndrome/

There is a facebook group of people who use cannabis to go into remission from Lyme. I did herx in the beginning.
Posted 10/27/2021 3:35 AM (GMT 0)
Very interesting - thanks for sharing! I've been thinking about picking up that book for a while now and keep putting it off. Maybe I'll do that. I am a bit of a special snowflake in that some mast cell stabilizing or antihistaminic substances cause me to flare (well I guess it's a possibility for most of us to react to substances, but still they are odd reactions), so I'd be interested to see if he has any thoughts about that.
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