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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Allergy / Mast cell treatments

natasa778

Senior Member
Messages
1,774
btw there was a small trial study on famotidine (h2 blocker) for kids with autism. They saw positive effects in reducing many ASD symptoms, but sadly the study was never followed up with a larger better controlled one...
 

xks201

Senior Member
Messages
740
This really is the crux of the problem and without advanced genetic testing and serum testing of neurotransmitters, histamine, etc, we will not know if it is a genetic mutation causing malfunction of a specific system or what. Personally antihistamines knock me out at extremely small doses. I am almost unable to function the next day after taking even a fourth of a normal dose.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Hi, given that gamma delta T cells inhibit mast cells in the gut, and promote food allergy tolerance, two simple dietary factors that promote gamma delta T cells are worth doing - eat lots of fruit and vegetables. To counter the extra calories, cut back on grains and sugars (if you are eating them) and any fats that are not essential fats. The stone age diet is an example of this. Bye, Alex
 

xks201

Senior Member
Messages
740
good thinking. more sugars means more gut fermentation which is not what anyone needs.
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
Thanks for adding to this thread. I'm no longer under the influence of the Vistaril coma but
I'm not all here yet either. I live in central Fl and Isaac is stressing me out. I hardly slept last night.
Granted I'd just woke up from my coma around 5 pm last night ... Lol .. I don't plan on taking Vistaril
again anytime soon. Fwiw, I'd caution anyone who's sensitive to meds to avoid this one unless you want
to sleep for a few days.

I took 5 mg zyrtec yesterday and 5 mg this am
and it didn't knock me out. I chose zyrtec because I read it was the most helpful with swelling.
I bought zantac too and will start it as soon as I'm comfortable with the zyrtec. The pharmacist also said
because of my swelling I need both h1 and 2. That's all I remember tho.

I was trying to understand how steroids work in relation to allergies but couldn't grasp it. Does anyone
know if we should be using these too ? I "think" I want to stay away from the nasal sprays since my
nose diesn't run anymore. However my sinuses are blocked.

Tc .. X
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
Hi xks,

Perhaps eliminating what foods or chemicals you know you're intolerant too would help too.
Maybe histamine levels or inflamation levels need to be minimized first in some cases.

I take 1/4 - 1/2 tsp of Target brand children's dye free benadryl as needed. Someone here started with
a different children's med.

For some reason, 5 mg of Walgreens zyrtec isn't knocking me out. Kow .. I'm guessing it's because my inflamation /
cytokine levels are low now. I was a real mess 24/7 when I was eating gluten, casein, soy, chemicals and caffeine.

I'm dying to see if I get shiners from dairy, phlegm from soy, etc after my mast cells are under
control. I'm assuming gluten is out due to the fact that I overproduce IGA antibodies.

Tc .. X
 

camas

Senior Member
Messages
702
Location
Oregon
Hi, given that gamma delta T cells inhibit mast cells in the gut, and promote food allergy tolerance, two simple dietary factors that promote gamma delta T cells are worth doing - eat lots of fruit and vegetables. To counter the extra calories, cut back on grains and sugars (if you are eating them) and any fats that are not essential fats. The stone age diet is an example of this. Bye, Alex

Except for fruits and vegetables high in histamine. I'm wondering if my consistent August crashes are because of my cherry, berry, and tomato binging.:)
 

camas

Senior Member
Messages
702
Location
Oregon
I took 5 mg zyrtec yesterday and 5 mg this am and it didn't knock me out. I chose zyrtec because I read it was the most helpful with swelling.

I bought zantac too and will start it as soon as I'm comfortable with the zyrtec. The pharmacist also said because of my swelling I need both h1 and 2. That's all I remember tho.

So happy to hear that you are tolerating zyrtec so well! It took me forever to work up to an adult dose. I took 1/4 of a 75mg dose of zantac this morning and am feeling woozy and a bit high. I know zantac is preferred, but I'm thinking I may have to go with pepcid which I've had no problems with in the past.

Hope Isaac is giving you a wide berth...
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
Hi aileen,

Thanks for all the great info. I followed it as best as I could and it looks like no one here reported
a positive reaction to ketotifen. At least not yet.

Hi jeffrez,

Sorry to year you reacted so badly to ketotifen. Did you try other h1 and h2s ?

I hate to say it but I wonder if eliminating certain foods and chemicals and eating nutrient rich foods will be needed first. This would
allow most of our body's inflamatory actions to calm down and allow our bodies to heal as much as possible. I'm guessing here
because I can't see how any amount of supplements or drugs could've undone the hyper state my body
was in prior to changing my diet.

Tc .. X
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
Guess how I know that there's corn starch in Wal-zyr ? I was feeling energized about 10 minutes after
taking 5 mg and was excited that my fatigue may have been allergy related. Then this morning I
recognized this hyper feeling as my reaction to corn starch. Sure enough it's the first ingredient
in Wal-zyr. Next is blue dye. Sadly, it's not clearing my head.

It always surprises me when manufacters use common allergens in meds but using common allergens
in allergy meds is wacky .. Lol ...

I got a lot done so far today so I'm going to stick with this for now but keep an eye on it. This could affect
my sleep. I need to catch up on chores, etc first tho. I dread looking for allergen free allergy meds.

The sun's out here today finally. My heart goes out to the people in the gulf coast.

Tc .. X
 

nanonug

Senior Member
Messages
1,709
Location
Virginia, USA
Re H2 receptors -- when they DO work in regulating histamine overload/sensitivity is mainly when they are used in combination with H1 antagonists. I cannot find my notes now but remember a couple of studies describing raised IgE levels when H2 (even H1 from what I can remember) blockers were used on their own. This effects was not present when a H1+H2 antagonists where used in combination.

This matches my own experience. My currently protocol (for Mast Cell Activation Syndrome) includes both fexofenadine and ranitidine. This combo works much better than either alone.
 

camas

Senior Member
Messages
702
Location
Oregon
I didn't feel well after a small dose of a zantac (ranitidine) yesterday, but tried a full dose of pepcid (famotidine) this morning because I have taken it in the past. Seem to be tolerating the combination of zytrec/pepcid/neuroprotek just fine, so I guess that will be my protocol for the time being.

ETA: Also got a new two-pack of epi-pens. I had become lax about getting them refilled in a timely manner since I haven't shocked since 2001. Not too bright. Better to have them and not need them, than to be caught without.
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
Hi nanonug,

I'd love to read your mast cell thread but my brain just can't handle all that new info right now.
Thanks for coming here and telling us your protocal. I haven't tried Allegra yet but it's on my list.

Hi camas,

Sorry to hear you had a bad reaction to zantac. I'm really nervous about taking a h2. It just hit me is it
possible that your reaction was to a filler ?

Are either one of you noticing an improvement ? Or are you still just happy not to be feeling crappy from the meds ?

I noticed yesterday and today that I don't feel like I have orthostatic intolerance when I'm upright but when I lay down, a million cells thank me for it. I can tell that my hypoperfusion is just as bad
because I feel the blood going back into my upper organs. As always, it feels like my lungs are the last to relax

I have a question .. from what I've seen the dosages of allergy meds is much higher than normal for people
on mast cell protocals. Is this a problem for people with kidney or liver problems ?

Tx .. X
 

Sherlock

Boswellia for lungs and MC stabllizing
Messages
1,287
Location
k8518704 USA
I noticed yesterday and today that I don't feel like I have orthostatic intolerance when I'm upright but when I lay down, a million cells thank me for it. I can tell that my hypoperfusion is just as bad
because I feel the blood going back into my upper organs. As always, it feels like my lungs are the last to relax
Maybe your system has learned to adjust smooth muscle contraction in the arteries necessary to keep your brain supplied, but that still doesn't mean that other regions aren't undersupplied with oxygen.

Speaking of lungs, histamine of course constricts air passages - probably usually in an attempt to minimize incoming allergens. But in mast-cells-gone-wacky, no allergen is needed but the MCs will still misbehave. Along that line, I tried diphenhydramine today before a hilly walk, but was disappointed to have no benefit. In my past experiments, using oral ephedrine as a physiological antagonist, I did originally see benefit but then subsequently didn't. Things aren't simple, that's for sure.
 

Sherlock

Boswellia for lungs and MC stabllizing
Messages
1,287
Location
k8518704 USA
Btw, with the GI tract being currently talked about in this thread, I'll mention that enterochromaffin-like cells also produce histamine in the stomach.How that might matter, I don't know.


And I hope that everybody is aware of the potential for certain histamine blockers leading to gynecomastia aka the dreaded man boobs. Now that really would matter. :(
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
Hi sherlock,

I was thinking it could be the zyrtec and some other meds that affect my brain make me less
stressed about my oi or unable to get po'd by it. I noticed this with pain meds before. I'm hoping the zyrtec stops
making me groggy soon.

Fwiw tho, I have petite mals most of
the time when I'm upright now so either the blood is barely making it into my brain or my
glucose / insulin is off. I remember reading that some Alzheimers patients benefitted from nasal
insulin.

Great info on histamine and our lungs. Thanks. I'll have to think about this.

Three things that have helped me gain muscle strength or energy from
time to time are p5p, adb12 and eating something sweet before exerting myself. I always eat fruit, etc
when I'm doing chores or running errands. I can't function otherwise.

Oh and apparently corn starch .. Lol .. Tc .. X
 

camas

Senior Member
Messages
702
Location
Oregon
X,

Who knows why I didn't do well with the Zantac. I haven't noted a problem with fillers in the past, but I guess it's a possibility. So far I'm mostly happy to be able to tolerate an adult dose of the other two meds together. My skin is much less dry on the Neuroprotek -- like when I was taking flax seed oil. I believe that I'm also feeling a bit calmer.
 

Sherlock

Boswellia for lungs and MC stabllizing
Messages
1,287
Location
k8518704 USA
Three things that have helped me gain muscle strength or energy from
time to time are p5p, adb12 and eating something sweet before exerting myself. I always eat fruit, etc
when I'm doing chores or running errands. I can't function otherwise.

Oh and apparently corn starch .. Lol .. Tc .. X
Hi, X. Then you might be interested to know that in the world of exercising, a new thing among trendy lo-carbers is waxy maize, which is a low GI carb and an expensive supplement. It's also low on the insulinogenic scale. I never followed that much about it for lack of interest, but I do know that an inexpensive alternative is corn starch.

I'd guess that you are very right to be thinking of blood glucose is primary in your case. Do you know that whole wheat bread and white bread are about the same, both high? That white pasta is fairly low GI? Yogurt and dairy is low?
 

nanonug

Senior Member
Messages
1,709
Location
Virginia, USA
from what I've seen the dosages of allergy meds is much higher than normal for people on mast cell protocals. Is this a problem for people with kidney or liver problems?

This is a valid question, one for which I have no answer other than to recommend regular kidney function testing. I can tell you that I take 360mg of fexofenadine a day (H1 blocker, normal is 180mg) and 1350mg a day of ranitidine (H2 blocker, normal is 300mg). These dosages are the result of trial and error and work for me but there is obviously no guarantee that they work for anyone else. To that I add plenty of NeuroProtek (9 caps/day). I take all this stuff on an empty stomach one hour before each of the the three. The fexofenadine I only take before breakfast and dinner. Good luck!