Mcas Confirmed!!

[Loulou]

Hi, I'm getting tested for MCA, what are your symptoms? And if I do have it, do you have any helpful info, other than the above posts? Thanks

Loulou

[RichGotsPots]

Which anti-leukotriene are u taking?

[DoozlyGirl]

Loulou,

What tests are you having performed? It is crucial that plasma heparin and blood PGD2 be collected into chilled tubes, and urine PGD2 be collected in chilled jug, and all of them have to be kept cold throughout transport to testing to prevent the mediators from degrading.

I face near daily episodes of anaphylaxis and have written dozens of posts on my symptoms, MCAS and my journey to get the diagnosis. My reactions have lessened since being on my MCAS regimen. Click on my name and you should be able to pull up all of my posts from the menu at the left of my profile.

Rich, I take 10 mg Singulair each night and about to taper up to 20 mg a day once I am finished tapering up my H1 and H2 to 3 times a day. Is there a different anti-leukotriene out there? I only know about Singlulair, which by the way is about to go generic.

Lyn

[Dizzysillyak]

hi again. I posted that article on mast cells and pelvic pain here. I made an attempt to break it up into more readible form on www.glutenfreeandbeyond.org if you're interested. I'm very tired tho so I can't vouch for how accurate my editing was ... tc ... d

http://forums.dinet.org/index.php?/topic/21254-highlights-of-the-international-pelvic-pain-society-annual-meeting/

[Dizzysillyak]

Hi again .. Lol .. Ok so I thought since my nose wasn't running anymore, my eyes didn't water and itch,

I no longer had constant phlegm in my throat and I wasn't itching all the time that my allergies were under

control.

Now I find out that you don't have to have all those other symptoms to have allergy problems. I started

having anaphylaxis last year but it didn't dawn on me to start treating daily.

BY

Big duh on my part ! Thanks again for bringing this to my attention.

So is there a logical approach to trying allergy meds or just try them all till you find one that works ?

And do you know if holistic treatments work or do drugs work better ? I'd rather not waste any more time.

And when I tried these a few years ago, I remember some, but can't remember which ones, knocked me out. Does this go away after awhile if you keep using them ?

Fwiw, I tested positive for parasites last year and I've seen parasites linked to allergies. I'm new

to this info so I'm not sure if it's true. It could've just been part of a sales pitch for all I know. This is when the throat swelling started tho. However, I'm treating these and it's wearing me out.

Tc .. D

[DoozlyGirl]

Dizzy,

I found out that I am really sensitive to the artificial dyes in medications, and when I avoid the dyes and meds with sulfa, I do ok. So based off of that, I'd recommend starting with claritin, generic claritin or zyrtec. Claritin is less potent and has fewer interactions than zyrtec, so Dr Afrin likes to start there. Once you have found a H1 that works, consider adding a H2. Start out slow and add only one med at a time so you can assess if you are reacting to the med.

I found that I could tolerate other supporting treatments better once on these meds. My mast cells had to settle down and the antihistamines definitely helped me in doing so.

Many do find that the sedative properties of anithistamines do go away after a week or so. You could start by taking the H1 at night before you go to bed for the first week. Note that others still have the sedative effects long after starting these meds. I have read taht zyrtec is more sedating that allegra, so some take allegra in the day and zyrtec at night. I've got several posts out there describing tapering protocols for starting antihistamines in case you are interested.

I am very interested in hearing your experience testing and treating parasites. I do believe this is a huge issue for some.

Lyn

[Dizzysillyak]

Thanks lyn,

That helps a lot. I'll pick up some claritin and take it at night. Then take it from there. I'd

love to see your tapering protocals. Are they on dinet ?

I tested positive for h pylori and a couple of parasites via a metametrix stool test late last year. My

doc ordered clarithrymicin (sp?) and metronadazole (sp?). Later I used mebendazole.

I started a home grown holistic protocal about 5 weeks ago because that same test said I had parasites of unknown etiology. It's papaya seeds, wormwood, clove, pau d arco, pineapple, bentonite clay, etc. I adding these in slowly. After about 3 weeks I saw worms, probably from cod, in my stool. I'd eaten cod with worms last year before noticing the worms.

I had dry heaves about a week after that and saw my doc. I suspect but I'm not sure that the heaves came from taking a hot epsom salt bath. I got my body temp up to 103. I'd read that a body temp of

104 would kill parasites. I haven't tried it since. Haha. Btw dry heaves are a sign that dogs have parasites.

My doc had ordered albendazole

to be taken for 6 weeks total, on 2 off 2. But my pharmacy says they can't get it. I'm currently

waiting for a new prescription to be ready at my pharmacy.

I'll let you know how it goes. Fwiw, I've been tapering off the treatment for the last 3 days and I'm feeling better. It was really wearing me down.

[DoozlyGirl]

I had the time to find an earlier post with a tapering protocol for those who are sensitive to meds and am cutting and pasting it here.

I'm sorry to hear you are reacting to the antihistamines. It may be the active ingredients, but it could be the inactive ingredients, such as the FD&C dyes (colors with a number, such as Yellow #5, Red #40, Blue # 1) which are known mast cell degranulators. These are called azo dyes in the mast cell literature. I go into anaphylaxis from Yellow #5 and #6 dye and to a lesser degree to the other numbered dyes, but seem to tolerate the oxide dyes. These are often written as red oxide or red oxine and also come in yellow and black. Zantac has the red oxide dyes. I have written many times on this topic, so feel free to search my posts and you'll find more details if you think this may be the case for you.

Some are reacting to inactive ingredients, such as lactose or citric acid. And yet others react to a source of the inactive ingredient, such as corn or gluten or soy.

There are dozens of antihistamines as well as dozens of formulations to try. You can also try to start out slow, take a 1/4 or 1/2 of the pill for a week and if goes well slowly increase the dose. Once you found a H1 that works, add in a partial dose of H2. Many of us have to take antihistamines 2-4 times a day. I always take a H1 at the same time as a H2, as I've read it works best in combination. Some even have to have their meds compounded without any fillers.

For example, I tolerate the following H1's:

• Zyrtec tablets and liquid gels as well as CVS cetirazine (generic Zyrtec),
  
• Dye free brand Benadryl liquid gels and Walgreens dye free diphenhydramine (generic Benedryl) liquid gels
  
• Brand Allegra and Target fexofenadine (generic Allegra) - oxine dyes only
  
• Prescription Hydroxyzine tablets (white ones)
  
• Walmart Equate loratidine (generic claritin)
  

And the following H2's:

• Walmart Equate famotidine (generic Pepcid AC)
  
• Brand Zantac - oxine dyes only
  

Good luck with this trial and error method of finding a antihistamines.

Lyn

[DoozlyGirl]

Dizzy,

I have done a several month cleanse in the past and may try it again. It really helped me, but disn't do too well when I added the parasite cleasing herbs in the second phase, so I went back to phase one. Never saw any critters, but it definitely straightened out some nasty GI issues for me, and I lost some bulk and weight, which was a nice bonus. I did the Dr Natura program.

Have you looked up the drug interactions with those meds? I was looking some antihistamines on www.drugs.com the other night and noticed that ketoconezole and its cousins are all listed in reacting to lots of meds, including the basic MCAS meds. I did see that claritin has much fewer interactions listed.

So gross about the cod, because I love cod! i am so sorry for you. I wonder what else we're all eating..... Didn't know that about dogs. Good to know.

So glad you are feeling better.

Lyn

[Dizzysillyak]

Thanks for the list of meds you take. I already googled equate loratidine and equate zantac

and they're gluten free. Hopefully I can get over there tomorrow.

That's great that you noticed an improvement from your cleanse. I completeky understand the problems

with parasite cleanses. I've been stuck at home most of the time with digestive symptoms.

I decided not to get a pre packaged parasite treatment because of all my intolerances. I ended up getting

the herbs from the bulk section at my local hfs.

It worked

out because it appears that black walnut hulls are either high oxalate or an allergy for me. I'm ok with

the others except for the fatigue.

I started with papaya seeds and had vertigo for 3 days until a freind reminded me to support my liver.

Taking Himalaya Liver care eliminated the vertigo in an hour. : ) I love it when supplements work that way.

I've been taking this one intermittently without any bad reactions for at least 5 years. Kow.

Oh I bumped a thread here on dehydration and histamine. Did you have dehydration and if so did it

improve on the antihistamines ? I know benadryl dehydrates me so I can't see how it would. Maybe the H2 does ?

Thanks again .. D

[RichGotsPots]

Hi Doozy, I tried Singulair and I really couldnt see a difference but there are two other ones Zyflo and one other and they are both more expensive and work in a different way. I heard they both work better but docs prescribe singulair because of the cost..

[DoozlyGirl]

Thanks Rich. Just learned Singulair by Teva is out there already. The generic could save about 45 bucks a month, if I can tolerate it.

[Dizzysillyak]

hi doozly,

I thought I'd pop in and let you know that last week I tried 25 mg Vistaril and it seriously

knocked me out for 3 - 4 days. I felt like I'd had iv sedation. So that one's out for me.

Now I'm trying 5 mg wal-zyr twice a day since I read zyrtec was good for swelling. I noticed

that it gave me an energy boost but it is probably from the corn starch. Corn starch and hfcs do this

to me. I see that it has blue dye too but I seem to be ok with a little dye. Increased energy is a good thing.

So far I haven't noticed any significant improvement in my throat swelling yet. It hasn't been severe tho so maybe

it's helping. I thought I'd increase the dose to 5 mg 3 times

a day starting tomorrow. Then continue increasing it up to 30 mg a day if needed. Based on what I've read, this seems to be the way to go. Right ?

I bought walgreens zantac but haven't tried it yet. I thought I read that we needed to see an improvement or was that we needed to verify we're ok with the h1 before starting the h2.

Fwiw, It's interesting to see how many people had leaky gut with tons of allergies, tried to avoid them but ended needing meds or supplements anyway. There outta be a time limit for avoidance protocals.

Thanks .. Marcia

[DoozlyGirl]

Hi Dizzy,

I've got a few thoughts for you to consider.

Before you write off the Vistaril, which is hydroxyzine, know that this is the parent of drug of Cetirizine (Zyrtec) and it crosses the blood brain barrier, giving the sedative effects, meaning the mechanism of the drug is supposed to give a sedative effect. It is a known effect and so you may want to consider asking if you can cut back on your starting dose. My doc started me on 10 mg tablets, so maybe the 25 mg is just way too much for you.

Didn't know that the Wal-zyr comes in 5 mg. Zyrtec and other generics come in 10 mg. The energy boost could also come from the cetirizine. I am currently taking zyrtec 10 mg 2x/day and taking hydroxyzine 20 at night. Both zyrtec aqnd hydroxyzine are H1s.

It is best to know if you tolerate the H1 before adding the H2. Note that it is best to not increase doses and add a new med at the same time.

If memory serves me right, the Walgreens Zantac has red 40, is that correct?

I do best with dye free Benedryl or dye free Walgreens diphenhydramine for swelling and edema. I'm finding that I do better with brand name meds. I suspect it is because brand name meds tend to have fewer ingredients and the active ingredients in generics can vary in doseage by 15%.

Yeah, leaky gut is a slippery slope which is so hard to get off that mountain!

Best wishes,

Lyn

[Dizzysillyak]

Thanks doozly,

Ot, don't you just love that dizzy and doozly are having such an intelligent conversation. Lol.

I'll reconsider a lower dose of Vistaril at some point when I have time to deal with the possible side effects.

It sedated me to the point of not remembering most of my trip to Walgreens 3 - 4 days later. And I was driving.

My Wal-zyr is 10 mg but I split it in half. I didn't realize it was from the same family as vistaril. Thanks. I'll keep in mind what you said about the drugs that help you for swelling. I'll have to

keep these on hand.

I'm going to boost my dosage today but only take 5 mg at a time. Since it's giving me an energy

boost, I'll stick to taking it during the day.

I'm pretty sure it's the corn starch because I've experimented

with this various times. I bought ribose with corn starch, had infants iron with hfcs, etc and all

made me hyper. Not that I mind right now. It's just a mild but marked energy increase and isn't

making me jittery at all. Granted I haven't experimented with certizine on it's own

yet to look for reactions.

I'm not sure if Walgreens zantac has red dye. I see that it has iron oxide red but I didn't google it

yet. Thanks for the tip on generics. I'll watch for that. I was in a drug (vistaril) induces stupor at Walgreens

picking up my script for creon when I bought these. They were buy one get one 1/2 price.

I'm curious about when and how doctors realize that treating for leaky gut via avoidance, probiotics,

glutamine, etc. isn't enough for their patients.

Not that I'd understand all the medical terms but I'd love to see this study.

Eta. I was thinking that maybe this protocal shouldn't be considered an add-on to the standard

avoidance protocal and might actually help leaky gut heal. Surely a digestive tract that's inflamed

from other non food allergies and those which can't be determined or avoided would compromise healing. I never figured out all my food intolerances and some of them changed over time. Not to mention some are delayed so how can we figure these out.

Thanks again. Marcia

[Dizzysillyak]

Hi again,

So far so good. I just got home from visiting with my family and was eating several fibro pain and pelvic pain

trigger foods without a problem. : ) Kow. Chocolate, tomato sauce and nuts.

I'm taking 20 - 25 mg Wal-zyr spread out thru the day.. And 1/2 tsp

children's benadryl at bedtime. I still have some throat and facial swelling at times but I think it was

from probiotics.

Oh and my oi improved too. I feel the muscles in my upper body relax when I lay down but I'm not

constanty getting the overwhelming urge to lay down.

My head's a little fuzzy but at times I'm almost back to my healthy cognitive capabilities. : ) I'm chattier

than I have been in several years. Lol. I'm sure the caffeine isn't helping that.

Thanks again for posting this .. Marcia