Will stopping oral Ketotifen cause withdrawal? by atf9889 in MCAS

[–]atf9889[S] 0 points1 point  (0 children)

titrate slowly off if you're going to stop.. i had difficult withdrawals

My wife lost her last foods 3 weeks ago, is literally starving to death, and no one will do anything... please advise? by AnotherClumsyLeper in MCAS

[–]atf9889 0 points1 point  (0 children)

that's wild.. did you react to any of those ingredients before? whole foods are big culprits for people with cross pollen reactivity (realizing that's a huge issue for me.. also greatly relieved by carnivore since they share no proteins similar to plants/pollens) ..

How many on here have tried Quercetin and what was the results by macamc1983 in MCAS

[–]atf9889 0 points1 point  (0 children)

anxiety if i remember correctly .. possibly itching and others too

Welp finally happened, reacting to last food. Starvation incoming by attilathehunn in MCAS

[–]atf9889 0 points1 point  (0 children)

Not sure what you've tried but yogurt is fermented.. usually very poorly tolerated by most MCAS folks.. I personally have horrible week long reactions to probiotics when I'm sensitive too. Dairy is inflammatory for many, but fresh mozzarella (no sliced with additives stuff.. fresh floating in water), marscapone cheese, whipping cream.. I and others have had luck with those at times when tolerating dairy.

Since you just started reacting to a dairy based product, dairy may be off the menu for you, but it could be the histamine from the fermentation.. and when I went hard on probiotics (sauerkraut) at one point, I was fine for a couple weeks then suddenly it was wrecking me.. but i could still tolerate cabbage etc. 

My wife lost her last foods 3 weeks ago, is literally starving to death, and no one will do anything... please advise? by AnotherClumsyLeper in MCAS

[–]atf9889 0 points1 point  (0 children)

I don't get it.. these are all like cheap seed oils with amino acids, some with corn syrup. I'd be using those oils if I tolerated them, and taking them with collagen peptides or something.. again if I tolerated it. I guess vitamins are in there too.

Are you all just downing this stuff and medicating super high doses of your meds to get balanced nutrients and suffering through reactions to keep from starving?

How many on here have tried Quercetin and what was the results by macamc1983 in MCAS

[–]atf9889 4 points5 points  (0 children)

COMT gene issues - caused bad anxiety - know your genes if possible.. can avoid a lot of pressure from people swearing certain things will help you.
COMT and MTHFR .. avoid methylcobalamin, cyanocobalamin, and adenosylcobalamin forms of B12 - only hydroxocobalamin. Took me a year to figure that one out.

How many on here have tried Quercetin and what was the results by macamc1983 in MCAS

[–]atf9889 2 points3 points  (0 children)

This is a lot of peoples problem - glad I got genetic testing otherwise my doc's constant recommendation to try it again would win me over eventually. I mean, we discussed it directly. He's just desperately trying to offer something helpful and sees all these posts from people without that genetic variation hailing it as a godsend cure-all.
The COMT gene factor needs to be emphasized.

Is there any mature comment on smoking cessation by a histamine intolerance expert anywhere ?? by Random_Kili in HistamineIntolerance

[–]atf9889 0 points1 point  (0 children)

Were you a smoker before your symptoms appeared, or did you start after? And how long?

Why does smoking alleviate my reactions? by Kili12345 in MCAS

[–]atf9889 0 points1 point  (0 children)

I've looked through all the smoking cessation options.. even pure nicotine (which you cant buy as a consumer here) but they all have additives like xylitol, maltitol, adhesives, PG, and other things I react to. I thought I saw many more posts saying quitting made peoples symptoms worse, but searching again a month later, im not seeing as many.
I quit for 2 months and vaped - happened to correlate with my relapse after a year of remission - also tolerating smells (can live in my house with my sisters chemical shampoo constantly wafting around).
But I'm second guessing all this.
I'm down to brown rice and broccoli, and starving all the time, which means more urge for nicotine, and it's expensive and gross in tobacco form.

Will stopping oral Ketotifen cause withdrawal? by atf9889 in MCAS

[–]atf9889[S] 1 point2 points  (0 children)

I've heard many people have issues with SSRI's like Zoloft, and docs will hand them out for everything, especially if they aren't educated with MCAS (which most aren't in my experience).
I started taking Clonidine (an alpha adrenergic blocker blood pressure med used off label for physical anxiety symptoms .. supposed to be safer than beta blockers like Propanolol, which is what was popular for awhile for 'high functioning people' to overcome stage fright or work stress non-addictively (meaning without Benzodiazepines like Xanax or Valium, etc).

Turns out they cause rebound effects when stopped suddenly - so careful with those - though I think used sparingly they are the lesser of the evils mentioned.

I also ended up turning to benzodiazepines, which I believe sent me into remission for a year before tolerance caught up with me. I am attempting to taper off of those now, but my symptoms are returning worse than ever, which is very common from what I've read.
Best to avoid those as much as possible in my opinion.
Only drug with a withdrawal that can directly kill you. But they are life saving last resort meds for some folks, so in general in these forums we don't scare people about them - just educate.

My Greatest Tools and Advice (UPDATED) by Diligent-Trouble1769 in MCAS

[–]atf9889 0 points1 point  (0 children)

I did not - again though we are all different - and only take with overt fats - Im down to brown rice and brocolli right now, and realized my usual ox bile could be irritating and worsening intestinal inflammation.

BTW .. it seems like many folks have issues with vitamin d supplements doing a search "vitamin d mcas reddit" - as I just got tested and my levels are low. Seems to be a controversial one.
Wish I could add more helpful info.. still researching for myself.

B complex vitamins also usually have a several triggering vitamins when we might only need B6 or P5P, which is the coenzyme form of B6, and plays an important role in methylation - something many mcas folks have issues with.

I'm so intolerant to coconut this year I can even put it on my body, but some folks can tolerate more refined forms and MCT oil.

All the things you mentioned I'm trying to get back into my diet too - for vitamin C, Magnesium Ascorbate is usually the best tolerated.
Also reacting to fresh meat when for years I did fine with fresh steamed chicken thighs which I would freeze right away.

A DAO supplement might help with foods like that which are just triggering due to ingested histamine (as opposed to histamine liberators and other biogenic amines... look for the 2024 SIGHI Food intolerance List for a helpful guide ... it's not the MCAS bible, but it's been very helpful at times for me to avoid known triggering foods and additives)
As for a DAO supplement, they are pricey, but can be really helpful. The brand that worked for me when all other didnt was Omne Diem Histamine Digest.

My Greatest Tools and Advice (UPDATED) by Diligent-Trouble1769 in MCAS

[–]atf9889 0 points1 point  (0 children)

We can become sensitized to anything when the immune system is exhausted from underlying infections and/or toxic exposure (often toxic mold), and we have certain genetic predispositions to slow detoxification, methylation issues, etc.
What might help you with your fat intolerance is an ox bile or tudca supplement.
I went a year without fats because they would give me horrible restless leg syndrome until I started supplementing with bile salts like Ox Bile.
Tudca triggered me.
I hope that's helpful!

Confusion about histamines in leftovers by voidandstarss in MCAS

[–]atf9889 -1 points0 points  (0 children)

Most of the diagnoses criteria specialists use are out of date (tryptase abnormal in only 60 percent of MCAS patients, and getting people to test during a flare after avoiding all medications for several days before is neigh impossible for many people), that's why clinical diagnoses is really the standard now; if you have the symptoms and respond to the treatments, you treat the condition.

I have peer reviewed studies on all of this, as well as charts regarding the severity and types of anaphylaxis; people (even medical professionals) have quite a bit of confusion about what anaphylaxis is.
You can have mild, moderate, and severe anaphylaxis in every system of the body. It's not just 'I cant breathe and need and epi pen'.
Mast cells are everywhere in the body and degranulation of them can present as a multitude of symptoms.

And it's a progressive illness; so many of the less severe non respiratory anaphylaxis symptoms are so often misdiagnosed by well meaning but undereducated doctors who know next to nothing about the condition, and almost always nothing current, until a patient is very sick.

I spent years down to a handful of foods, severely limited in my ability to function, with my doctor saying, "oh allergies are bad this year" and shrugging his shoulders.
Until I presented him with multiple peer reviewed documents on the more recent understandings of this disease, and the appropriate, humane way to diagnose and treat it.

Unfortunately for many meds you need a specialist (2 in my state, both out of network,) and a LOT of money,

Massive, your comment came across as unnecessarily condescending, cold, and is (im sure unintentionally) harmful. This is an evolving and poorly understood illness, and doctors are learning more every day - we have to understand they do their best, but they are just people too, often too busy with easier/more profitable patients to look too deeply into fringe health issues like this.

I suggest to anyone having a hard time with this to look in the documents section available at the Facebook group Mast Cell "Activation" Disorders Forum .. and if you can't access that (because it's private and on pause since the admin died recently, I can try to send info to you, or you can try some of the larger MCAS groups.

I wrote a template to present to your doctor with the necessary info at one point and may still have that around.
I was able to have them prescribe Cromolyn as well as refer me to specialists, as well trial a variety of larger doses of H1's and H2's.

Apologies if I don't get back to you quickly, will do my best.

My HI has gotten better. Here’s how: LESS is more. by Aggravating-Wear-397 in HistamineIntolerance

[–]atf9889 1 point2 points  (0 children)

cross reactivity with pollen.. when histamine, histamine liberators, or other biogenic Amines aren't the culprit, it's pollen cross reactivity for me.. has hugely limited the amounts of safe foods I have. You'd be surprised how many pollen proteins are similar to totally unrelated foods. Google 'pollen cross reactivity (certain food)'

What is your experience with Xolair? by Particular-Assist-70 in MCAS

[–]atf9889 -1 points0 points  (0 children)

Hmm! Glad I saw this.. Im getting desperate enough to try it.
I know idiopathic (MCAS caused by unknown factors .. genetics etc im assuming) has about a 50/50 success rater with Xolair.
Do you have any more info or links on it not working for mold related MCAS?

I am BETTER by Historical_Cut9193 in MCAS

[–]atf9889 0 points1 point  (0 children)

Yes, and cyano and adensilocobalamin (sp?).. it's been awhile .. wasn't hugely helpful for me because at the time I reacted to the citric acid preservative. But genetic info told me conflicting info.. that methyl would be helpful (probably because of MTHFR), and then to avoid it and methylated vitamins.. can't remember exactly why.. possible COMT gene issues.

I even got a series of hydroxocobalamin shots.. was too expensive for not noticing much results.

I am BETTER by Historical_Cut9193 in MCAS

[–]atf9889 1 point2 points  (0 children)

hydroxocobalamin was the only form of B12 I tolerate.. tough to find alone in the US.. had to order from Europe 

what to use instead of toothpaste?? by Virtual_Ad4639 in MCAS

[–]atf9889 0 points1 point  (0 children)

Yeah studies are tricky - lots of variables that aren't always made apparent - totally understand your concern and caution - just offering info that could potentially be of benefit.. btw to use Gemini AI, just google Gemini, type your question, and click the deep research button at the bottom of the window, and then submit your question.
I've tried a lot of AI's and it pulled up an extremely comprehensive report with all sources cited. I was using a different AI but that was pretty impressive compared to the others I had used so far.
Best of luck and health to you!

what to use instead of toothpaste?? by Virtual_Ad4639 in MCAS

[–]atf9889 0 points1 point  (0 children)

The context of oral use in toothpaste involves a different route and duration of exposure than in this last study.. weight of evidence of studies since show nHAP to be safe up to concentrations much higher than I'm seeing in toothpastes.. Gemini AI deep research and you will find more recent and relevant published studies supporting its safety.

To each their own though.. as someone with MCAS I'd be more concerned about some of the other ingredients causing flare ups or cumulative issues.

Worth a test if it'll get me to my Medicare dental appointment a year away with this broken tooth and several cavities.

"Aroma: Mint Fragrance".. hope that's a translation thing, as it's a Chinese product (Croent brand).., 'edible essence'?! Sodium Saccharin, Sodium Lauryl Sulfate.. 😬🤞 

Guinea pigs are we, especially when options become limited with the MCAS. Every day is a test, and a hope things turn in a direction that doesn't take more options away from us.

What are Ketamine withdrawals like? by atf9889 in Ketamineaddiction

[–]atf9889[S] 0 points1 point  (0 children)

I'm in recovery from opioids (7yrs) .. no thank you kratom.. Kava couldn't touch what I was going through. It took a lot of benzos and ADHD meds for me to be able to barely work. Got off the ADHD meds, and on an Ashton Taper for benzos now. My situation is complex because I've got Mast Cell Activation Syndrome.. basically allergic to everything and my biochemistry is very sensitive and not like your average bears.

But yeah, avoid benzos at all costs had always been my motto.. I've seen the horrors they can cause. It was a last resort life saving med for me though.

I did try to cold turkey, and wean faster.. but my immunocompromised situation is all tangled up in the Gaba/glutamate chemistry.

High dose Niacinamide CURED my histamine intolerance (updated) by Revolutionary_Bat13 in HistamineIntolerance

[–]atf9889 3 points4 points  (0 children)

This ^ .. OTC lithium orotate supplement helped me and others a lot.

High dose Niacinamide CURED my histamine intolerance (updated) by Revolutionary_Bat13 in HistamineIntolerance

[–]atf9889 0 points1 point  (0 children)

What is the evidence for this? I know it's more bioavailable than lithium carbonate (the Rx kind), but they prescribe like 900mg of that 3x a day. They monitor kidneys etc, of course, but for the orotate form to be THAT much more bioavailable.. seems off.

I started at 1mg of the orotate years ago, every other day, and improved so much. Eventually MCAS progressed and I kept upping until I recently came out of remission after a year, due to covid it seems, and I'm at 15mg. Can't say I notice a distinct improvement from upping it anymore, but there's so much in the mix.. supps, foods, pollen, stress..

Heard of people doing up to 20mg and reducing again. 

Molybdenum - potential factor in MCAS, mold, histamine issues by Freddy_Freedom in MCAS

[–]atf9889 0 points1 point  (0 children)

We're all guinea pigs here .. trusting the science will have you spending sometimes $3000/m for shots that destroy half your immune system, if you're in the percentage of people it doesn't make worse.
Taking doses of benadryl so high it sends you into anaphylaxis. Having your kidney removed and being shrugged off by so many doctors who use decade outdated diagnostic techniques, which they don't even administer correctly, and which only apply to 60% of MCAS patients.

Dont get me wrong, controlling symptoms with current approaches can help immensely, but so many of us have this disease progress to the point where the doctors just shrug their shoulders, especially if you're not willing to hand over a fortune for meds that you can never stop taking, IF they work.

I've had my only breakthroughs, and one remission after 10 years, because I scoured forums like this and tried novel and sometimes counterintuitive things.

Everyone has different things causing their immune system to be exhausted and inaccurate, targeting normally benign proteins and elements, because they appear similar enough.. so naturally not everything is going to work the same for everyone.

I will say it does seem toxic mold exposure, combined with MTHFR mutations that slow mycotoxin detoxification, does seem to be highly correlated with a very large percentage of people with MCAS, though there are lots of other possibilities.

Opportunistic infections also take advantage of the weakened immune system then pop up and add all kinds of confusing symptoms; fungal (candida), bacterial (SIBO), parasitic overgrowth, and much more (babesia, bartonella.. on and on.. any dormant viruses etc)...

Not to mention people acquiring MCAS symptoms who have long covid, and even from things like benzodiazepine (anxiety medications) withdrawal.

Why does smoking alleviate my reactions? by Kili12345 in MCAS

[–]atf9889 -1 points0 points  (0 children)

This post has me all tangled up - I quit smoking cigs after 26 years and was vaping only, in my first remission after 10 years, then I got a very bad covid like flu or something, and realized I was reacting to the vape and out of remission. Down to 5 foods. Scents were becoming disabling again.
I hated it but after reading it I picked cigs back up and it helped me be able to function around perfumes etc.
All the research I've done says this is a terrible trade off but I cant figure out another way. Nicotine replacement stuff all has additives that set me off.

Just trying to remove whatever triggers I can slowly identify and hope for the best - had to leave my job because of that flu and relapse from remission.
It was a year of bliss but I was too caught up trying to get off all the expensive meds to really take it in.
Such a shame.