Allergy / Mast cell treatments

[xchocoholic]

Ok, so after 7 years of modifying my diet (wahls now) and experimenting with energy and detox supplements, I realize now that allergies / mast cells are still a problem for me despite avoiding all my known food
intolerances. I thought I had my allergies under control because the constant runny nose, itchy watery eyes, constant phlegm, etc were
eliminated when I removed the SAD garbage from my diet. Recent throat swelling should've been a clue for me but my cfs brain doesn't get clues anymore. Lol

I figured out several years ago that if I tried adding bacon or tomatoes back into my gfcfsf diet
that my fibro pain returned with a vengence. I wasn't sure why until I started reading about mast cells.
Cort has a great article here.

I've been on a low oxalate diet since 2008 due to kidney stones and not too long after eliminating
high ox foods my pelvic pain disappeared. I attrubuted this to eating high ox foods since that's what I'd read
on the trying low oxalate diet board and the vulvodynia site.

I've been experimenting with high ox foods for the last year
and discovered that I don't always react to high ox foods which makes me think mast cells are involved.
I've read that certain bacteria degrade oxalates but if there's a connection I haven't made it yet. I've been eating
Kefir or taking probiotics most days since 2005. The connection could be there tho and I just haven't
found it.

I passed 1 kidney stone in the last year while experimenting with high ox foods but I'm pretty sure
that was from not drinking enough water. I was on a veggie juicing and orange kick at the time so I didn't feel thirsty.

Back to my allergies .. According to a skin prick test years ago, I'm allergic to most everything on the planet.

I'm extremely allergic to dust (huge welt on back during testing) and I know I can never keep my place dust free because
I'm allergic to dust so dusting makes me feel sick. Lol . I'm working in this tho. I put away all knick knacks.

I've been using Target brand children's dye free benadryl and it works for the throat swelling but it wipes me out. I tried 25 mg of Vistaril
for the first time the night before last and slept all day yesterday. It was a new and interesting feeling in my
brain so I'm going to try it again. I think. I'm not sure how to define the feeling just yet. Drugged yes but not like
Loratab or klonopin.

I was wondering if others here experienced the "funky" brain feeling from Vistaril. I skipped it last night because I was afraid to take it. I had ataxia 24/7 from 1990 - 2006 and I get myoclonus and petite mals easily so my brain isn't what it should be.

Meanwhile if I can stay awake today I want to go get some stinging nettle, quercitin, claritin and zantac.

Anyone else with me/cfs treating these ? Tx .. X

Eta. I recognized this groggy / post Vistaril feeling. It's the same way I feel for a few days after iv sedation.

 

[camas]

I've never heard of Vistaril, so can't comment there. Klonopin is my most effective drug. I've been on .5 mg for six years and it's really calmed my reactions to everything. I see that benzos are used in the treatment of mast cell problems. I've slowly worked my way up to an adult dose of Zyrtec and that seems to help some.

While I await the results of my skin biopsy for TMEP Mastocytosis, I've been trying dye-free benadryl at night. Leaves me feeling groggy in the morning, but my skin is already looking much better. Also doing a two-month trial of Neuroprotek. I'm going to try Zantac in the next few days to see how I react. From what I've been reading they say it's the best H2 blocker for mast cell issues. They say to avoid Tagamet for some reason. I'm going to look into what a low histamine diet entails. I should probably try just one thing at a time so I know what's working and what isn't, but I'm so enthused to finally be pointed in the right direction for treatment.

 

[xchocoholic]

Hi camas,

I'm excited about the new treatment avenue and will be trying all kinds of things quickly too. I resisted these meds because of the way they knock me out but I'm sticking with it to see if it helps.

When you say you've worked your way up to an adult dose of zyrtec, did you start with children's
or split the pill ? Since children's benadryl works fir me I was considering trying other children's meds.

I'm going to split the vistaril next time. 25 mg is just too much for me. The upside was that it cleared
my sinuses. The downside is that I'm still feeling groggy 36 hours later. Actually this is how I feel for a few days after iv sedation.

Fwiw, Vistaril is a first generation prescription anti histamine that also helps with insomnia. I asked for it because a family member takes it and said it worked great. This family member is healthy tho.

It's my understanding that klonopin won't work on mast cells since these are from allergies but it can help
other side effects. Adrenaline surges for example. Fwiw, I'd try stopping the klonopin once you get the allergies
under control. Klonopin is an addictive drug so I only take it once in awhile for myoclonous or if my
insomnia is too bad. Theanine is an alternative.

Do you know if zantac is recommended even if digestion is good ? I'm ok as long as I take enzymes (creon)
that my stool tests say I need. Or can mast cells block enzymes so zantac would help ?

Tc .. X

 

[natasa778]

Doing h2 blockers on their own can worsen allergic/histamine issues. Taking h1 blockers alongside h2 ones was found to lessen/eradicate this risk.

 

[soulfeast]

I am looking into this as well. Concerned about h1 blockers lower stomach acid leading to other problems.. ?? I have NeuroProtek here and singulair... claritin and pepcid.

 

[xchocoholic]

Hi natasha,

Do you know why taking h2 alone would worsen allergies ? I don't understand why it's called an h2 when
I keep reading that it blocks acid production. It just seems like an h1 would be the only allergy med needed. Bare in mind my cfs brain is on mast cells and drugs .. Lol ..

Hi soulfeast,

Good to hear you're trying this too. The more pwcs we get to try this the more we'll know. I'm concerned
about blocking acid too.

A freind on the dinet board said that dr afrin recommends we start with claritin and zantac. I was going to start
with Equate claritin since it's gf but got side tracked by a phone call from a family member. It's in the mcas confirmed thread.

I saw the info on nueroprotek but would prefer trying single ingredients first to watch for reactions.

Please keep us up on what you try. Tx .. X

 

[camas]

When you say you've worked your way up to an adult dose of zyrtec, did you start with children's or split the pill ? Since children's benadryl works fir me I was considering trying other children's meds.

Fwiw, Vistaril is a first generation prescription anti histamine that also helps with insomnia. I asked for it because a family member takes it and said it worked great. This family member is healthy tho.

Do you know if zantac is recommended even if digestion is good ? I'm ok as long as I take enzymes (creon) that my stool tests say I need. Or can mast cells block enzymes so zantac would help ?

Thanks for the info on Vistaril. May have to look into that. Yes, I started with children's liquid Zyrtec. An adult dose made me too groggy, even though it's not supposed to be sedating. So I slowly worked my way up from 1/4 to a full teaspoon.

From the reading I've doing, it looks like an H2 blocker is recommended and it seems that most people with mastocytosis are on them. I don't know if mast cells could block enzymes. I wish we had a mast cell expert on here to guide us! My stomach is usually pretty acidic, so I'm going to give the Zantac a try and hope it doesn't mess up my digestion in any way.

For some reason I do well on Klonopin and have no trouble adjusting the dosage up or down. Maybe I'm just lucky?

 

[camas]

I am looking into this as well. Concerned about h1 blockers lower stomach acid leading to other problems.. ?? I have NeuroProtek here and singulair... claritin and pepcid.

I'll be interested to hear what you think about NeuroProtek. I haven't seen any changes yet other than my skin being less dry, but have only been on it a week.

 

[soulfeast]

How many are you taking? I just started and 2 twice a day so far.. not sure to take at once or space out.

 

[camas]

How many are you taking? I just started and 2 twice a day so far.. not sure to take at once or space out.

They say to take it twice a day. I'm getting conflicting info on how much to take because the bottle says 3 pill per 44lbs, and the website says 2 pills per 44lbs and a maximum of 8 per day. I'm taking three in the morning and three at night for now. Don't know if I can afford to take more!

 

[soulfeast]

This is a good forum on mast cell disorder. http://mastcelldisorders.wallack.us/yabb/YaBB.pl

 

[soulfeast]

They say to take it twice a day. I'm getting conflicting info on how much to take because the bottle says 3 pill per 44lbs, and the website says 2 pills per 44lbs and a maximum of 8 per day. I'm taking three in the morning and three at night for now. Don't know if I can afford to take more!

Did not read when to take.. thank you. I agree. I'm sticking with website instructions and the cost is nuts, like everything else sadly.

 

[soulfeast]

Hi soulfeast,

Good to hear you're trying this too. The more pwcs we get to try this the more we'll know. I'm concerned
about blocking acid too.

A freind on the dinet board said that dr afrin recommends we start with claritin and zantac. I was going to start
with Equate claritin since it's gf but got side tracked by a phone call from a family member. It's in the mcas confirmed thread.

I saw the info on nueroprotek but would prefer trying single ingredients first to watch for reactions.

Please keep us up on what you try. Tx .. X[/quote]

Hi X, good to hear from you again! I read that Afrin suggest claritin and pepcid first then moves to zyrtek and zantac because the former are associated with less side effects.. guessing some of that is cyp450 pathway issues. My environmental md said that pepcid and zantac are similar and do not have whole body action (my wording from what I vaguely understood) like the other PPIs.. still concerned about the stomach acid issue, esp taking twice day.

I think this also fits my daughter.. she is on a beta blocker and if using drugs would rather address core cause.. and I am reading this could go back to mthfr issues in some way. but if so and until resolved.. cant tolerate the symptoms be that POTs, mast cell.. mast cell induced pots.. ??

 

[soulfeast]

Regarding h1 and h2, this is from the forum I posted above: I commonly see that MCAS patients have their H2 blocker (in your case,
Zantac) reduced in frequency once a proton pump inhibitor (in your case,
Prilosec) is added. This is in the misguided belief that the H2 blocker
is being given solely to address the receptors on the gastric parietal
cells which cause those cells to produce acid. While all H2 blockers do
have this effect, the principal reason an H2 blocker is given to an MCAS
patient is not to block the gastric parietal cell H2 receptors but
rather to block the mast cell H2 receptors. Histamine released by mast
cells causes a wide array of effects throughout the body, including
"looping back" to dock with the mast cell's own H1 and H2 receptors
which, in many forms of MCAS, stimulates further mast cell activation,
and thus both H1 and H2 blockers (e.g., Claritin and Zantac) are needed
to interfere with this loop-back mechanism. Thus, I recommend that you
boost your Zantac 150 mg back to twice daily. "
Dr Afrin

 

[xchocoholic]

Hi again,

Thank you for the additional info. I tried checking out the mast cell site but not much is sinking in tonight.
I read the owner's story tho. It looks like she changed her diet like I did first. I just wonder who gets
better by changing their diet and who doesn't. And if she looked for an underlying cause of her mast
cell problem. I didn't have throat swelling until I got h pylori and parasites last year.

Great find on the h2 also. So I'll be trying that too.

Fwiw, I have to get busy. I live in central Fl and need to look at my hurricane supplies just in case. Tc .. X

 

[natasa778]

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.

These could hopefully give you more clues:

Improved outcomes in patients with acute allergic syndromes who are treated with combined H1 and H2 antagonists http://www.ncbi.nlm.nih.gov/pubmed/11054200

Treatment of chronic idiopathic urticaria with combined H1 and H2 blockers http://www.ncbi.nlm.nih.gov/pubmed/30546

Greater inhibition of dermographia with a combination of H1 and H2 antagonists http://www.ncbi.nlm.nih.gov/pubmed/6132569

H1- and H2-receptor antagonists prevent histamine release in allergic patients after the administration of midazolam-ketamine. http://www.ncbi.nlm.nih.gov/pubmed/10219654

Histamine 2 blocker potentiates the effects of histamine 1 blocker in suppressing histamine-induced wheal http://www.ncbi.nlm.nih.gov/pubmed/19052407

Conjunctival eosinophil infiltration evoked by histamine and immediate hypersensitivity. Modification by H1- and H2-receptor blockade http://www.iovs.org/content/27/10/1495.long
… neither cimetidine nor pyrilamine alone produced an inhibitory effect, but a cimetidine-pyrilamine combination caused a significant reduction in the number of infiltrating eosinophils and prevented epithelial damage and goblet cell depletion


Another very interesting thing I was coming across when looking into antihistamines was histaminergic involvement in various areas that are often problematic in CFS/ME like modulation of glutamate release, central cholinergic system, even cardiac systolic function …


A histamine H₂ receptor blocker ameliorates development of heart failure in dogs independently of β-adrenergic receptor blockade http://www.ncbi.nlm.nih.gov/pubmed/20852875
These beneficial effects of famotidine were associated with a decrease of the myocardial cAMP level. Histamine H₂ receptor blockade preserves cardiac systolic function in dogs with pacing-induced heart failure, even in the presence of β-adrenergic receptor blockade. This finding strengthens the rationale for using histamine H₂ blockers in the treatment of heart failure.

 

[xchocoholic]

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.

These could hopefully give you more clues:

Improved outcomes in patients with acute allergic syndromes who are treated with combined H1 and H2 antagonists http://www.ncbi.nlm.nih.gov/pubmed/11054200

Treatment of chronic idiopathic urticaria with combined H1 and H2 blockers http://www.ncbi.nlm.nih.gov/pubmed/30546

Greater inhibition of dermographia with a combination of H1 and H2 antagonists http://www.ncbi.nlm.nih.gov/pubmed/6132569

H1- and H2-receptor antagonists prevent histamine release in allergic patients after the administration of midazolam-ketamine. http://www.ncbi.nlm.nih.gov/pubmed/10219654

Histamine 2 blocker potentiates the effects of histamine 1 blocker in suppressing histamine-induced wheal http://www.ncbi.nlm.nih.gov/pubmed/19052407

Conjunctival eosinophil infiltration evoked by histamine and immediate hypersensitivity. Modification by H1- and H2-receptor blockade http://www.iovs.org/content/27/10/1495.long
… neither cimetidine nor pyrilamine alone produced an inhibitory effect, but a cimetidine-pyrilamine combination caused a significant reduction in the number of infiltrating eosinophils and prevented epithelial damage and goblet cell depletion


Another very interesting thing I was coming across when looking into antihistamines was histaminergic involvement in various areas that are often problematic in CFS/ME like modulation of glutamate release, central cholinergic system, even cardiac systolic function …


A histamine H₂ receptor blocker ameliorates development of heart failure in dogs independently of β-adrenergic receptor blockade http://www.ncbi.nlm.nih.gov/pubmed/20852875
These beneficial effects of famotidine were associated with a decrease of the myocardial cAMP level. Histamine H₂ receptor blockade preserves cardiac systolic function in dogs with pacing-induced heart failure, even in the presence of β-adrenergic receptor blockade. This finding strengthens the rationale for using histamine H₂ blockers in the treatment of heart failure.

Wow. Thanks. X

 

[camas]

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.

Thanks so much for all this info, natasa.

 

[Aileen]

The prescription drug Ketotifen is another anti - allergy/mast cell drug. It works against both histamine and mast cells and I have read that it may work against TNFalpha as well. Here is an article describing some of its other effects. There is more being discussed on Ketotifen in a couple of other threads - FM trial shows promise and also Ketotifen for leaky gut

 

[jeffrez]

I didn't get much benefit when I tried ketotifen, but theoretically it might be a help to some. For me it gave symptoms of congestive heart failure, something to do with the 5-HT receptors, I guess, or some of its cholinergic or other actions like mentioned above. Was afraid to try it again after that.