Mast Cell Disorders Forum

Mast Cell Disorders Forum
http://mastcelldisorders.wallack.us/yabb/YaBB.pl Welcome! >> Introduce Yourself/Share Your Story >> Newbie but already responded : ) http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1350962467 Message started by MarciaB on 10/22/12 at 16:21:07

Title: Newbie but already responded : )
Post by MarciaB on 10/22/12 at 16:21:07

Hi All,

Many of you know me already from other message boards. It's good to see some familiar names here. : )

I'm xchocoholic at Pheonix Rising and Tryinglowoxalate, Dizzysillyak at Dinet and GFCanary at GlutenFreeandBeyond. I'm hoping this is the last forum I'll need to join. Lol.

I've been on a healing journey since 2005 and the internet has been my best
source of info. But the testing provided by my integrative doctor has provided me with many of the answers to why I'm disabled. A thread started by a member here on Dinet is what brought me here.

I've been totally disabled with ME/CFS since 1990. I tried the traditional medical route, drugs, and only got worse. In 2005, it appears that I became a celiac and was unable to keep food in me.

The elimination diet I started in June 2005, made such a difference in how I felt that I just couldn't stop reading everything I could find on health. My background is computers and math so I even had to watch anatomy class dvds from my library. Lol.

I made quite a bit of progress from 2005 - 2012, via diet and testing and treatments provided by my integrative doctor. I've had a few new diagnosises to add to my list too tho. I'm 57 tho.

But I was still mostly supine from dysautonomia / pots for the last few years. I had chronic pelvic pain that I thought was connected to oxalates. And new symptom, throat swelling, showed up in 2011.

Since starting my homegrown mc protocal, Wal-zyr several times a day and Children's Benadryl plus Allegra at nite, my dysautonomia and pelvic pain have been reduced significantly. And my throat swelling was better until I tried eating bbq sauce. ::)

I can see from hanging out here and on other forum mast cell threads that I have a very long way to go before understanding how this works. I feel so lucky to
be able to benefit from those who post their experiences and educational info on these forums. Thanks ..

My hope is to get a handle on this so I can move forward with getting a proper diagnosis. I have multiple diagnosises that I'm hoping respond to this protocal.

Thanks for reading this. It's good to be here.. Sincerely, MarciaB

Title: Re: Newbie but already responded : )
Post by DeborahW, Founder on 10/22/12 at 16:23:45

Welcome!! So glad that you found us! There are so many knowledgeable and helpful people here. Please feel free to chat and ask questions anytime!

Title: Re: Newbie but already responded : )
Post by MarciaB on 10/22/12 at 16:32:07

Thanks Debbie. And thanks for creating this forum.

I'm still overwhelmed by how complex mast cells are so I'll mostly be reading for awhile. I appreciate the support I received to my emergency question.

I'm looking forward to getting to know everyone. Tc .. M

Title: Re: Newbie but already responded : )
Post by Anaphylaxing on 10/22/12 at 18:24:36

Nice to see you here too Marcia! I hope you can get into see a mast cell doc to optimize your health :)

Title: Re: Newbie but already responded : )
Post by MarciaB on 10/22/12 at 23:59:43

Thanks anaphylaxing. Good to see you here too.

After my episode of throat and tongue swelling last Saturday, while on the meds I chose, I'm eager to get on the correct meds for me.

I have to say I'm loving what I've seen so far. I went swimsuit shopping with a freind yesterday and didn't need to lay down the whole time. 8-)

She's used
to me finding a room with a bench or just laying on the floor for 15 minutes at a time several times while shopping. I still have hypoperfusion and can feel it when I lay down but the overwhelming need to lay down rarely show up now.

Btw. Sears has swimwear for $1.99 right now. Regularly $24 - 48. I live in Fl so
I bought 7 pieces.

Tc .. M

Title: Re: Newbie but already responded : )
Post by PamH on 10/23/12 at 05:42:28

Marcia,
Welcome, I am glad you found us! A couple of things stood out to me in your intro. You should look into IC. Interstitial Cystitis/Painful Bladder Syndrome is caused by...drumroll please...Mast cells!! I had this and it was misdiagnosed as a kidney stone, as the pain can radiate to the kidneys.
BBQ is so tasty and so bad for those of us with mast cell issues! Probably about 90% of the ingredients are mast cell degranulators, meaning they are true trouble makers!!
Sounds like you are on the right path and good luck as you continue to heal!
Pam

Title: Re: Newbie but already responded : )
Post by MarciaB on 10/23/12 at 08:42:35

Thanks pam,

Sorry to hear you're dealing with all this too. Are the treatments helping you ? If so, which ones ? Wal-zyr zyrtec, seems to help me the most pain wise. But Benadryl stops my swelling.

I'm pretty sure I have irritable bladder but I'm not sure if that's the same as ic.
My bladder burns if I take roboflavin tho. And I leak if have too much coffee. Could be the caffeine but at this point I can only relate it to coffee.

Before I went on the elimination diet, my bladder burned and I leaked all the time so I don't know what all was causing it. Those are just the things I tried to add back into my regime but couldn't.

Fwiw, azo with probiotics helps me if this gets out of control. I haven't had to take azo in about a month now. Hmmmmm.

I've had at least 4 kidney stones so that's a given. They run in my family.

Tc .. M

Title: Re: Newbie but already responded : )
Post by Doozlygirl on 10/23/12 at 16:19:17

Hi Marcia, AKA Dizzysillyak,

I'm also on DINET and we have chatted there several times. I'll look for you on those other sites. Welcome to this forum, I know you will find lots of information here to help you understand the mast cell perspective to your health issues.

It took me years to figure out that inactive medication ingredients and food additives are some of my worst triggers, and have triggered anaphylaxis numerous times. I react horribly to MSG, aspartame, FD&C Yellow #5 (also known as tartrazine), FD&C Red #40, sulfites, parabens, and others. This has prompted me to tune in to inactive ingredients in meds and food additives.

When I first started on antihistamines, I gravitated to the generics, then over time started putting all this together when I began to research each of the ingredients listed as mast cell degranulators on various websites.

I could take white pills, but the minute my pharmacy changed my meds to a generic and it was yellow, I would react horribly. It wasn't until I learned about synthetic dyes, then connected them to azo dyes listed on various mast cell sites as a common degranulator, that I figured out that the FD&C or D&C dyes listed in meds and foods, most comon in less expensive products are issues for many of us with mast cell disorders. Yellow #5 is well publicized as a trigger for asthma, and mentioned in the IBS and IC publications.

Yellow #6 is made from Yellow #5, so you may want to avoid that one too. I avoid all of the FD&C dyes in my foods and meds and have been working on getting them out of my personal care products. I no longer use red pomegranite shower gel, but choose a clear, scent free gel.

I've briefly looked over the ingredients in your meds and found quite a few which are known degranulators, which I have highlighted in red.

Walzyr and other generics for cetirizine that I've looked at all contain FD&C Blue #1. The Walzyr also contains PEG, which is an alcohol, is also a common degranulator.

Children's Benadryl Allergy Liquid: Citric acid, D&C red no. 33, FD&C red no. 40, flavors, glycerin, mono ammonium glycyrrhizinate, poloxamer 407, purified water, sodium benzoate, sodium chloride, sodium citrate, and sugar.

In case you were thinking of looking into the dye free version ...
Children's Benadryl Dye-Free Allergy Liquid: carboxymethylcellulose sodium, citric acid, flavors, glycerin, purified water, saccharin sodium, sodium benzoate, sodium citrate, and sorbitol solution.

If you find that your "bucket" is full and want to change out these meds, consider checking into brand Zyrtec tablets or Zyrtec liquid gel capsules. Dye free Benedryl liquid gel capsules and Walgreens dye free diphenhydramine liquid gel capsules have the identical ingredients as the brand, but is cheaper. None of the above products has any of the dyes that are known triggers.

The zyrtec liquid gels are corn-free, gluten-free and lactose-free, but does contain PEG and sorbitol, sugar alcohol as the last ingredient. I have yet to find a cleaner version of a H1 that works for me. I also take hydroxyzine at night to clear brain fog, as it crosses the blood brain barrier and plugs the H1 receptors in the brain.

Allegra, and Target generic fexofenodine and Sam's club versions all have various oxine dyes, which is considered more "natural" and far less toxic. but those three also contain lactose, in case lactose is an issue for you.

I've read about mast cell patients who react to lactose, dyes, alcohols, citric acid and other ingredients, so keep that in mind if your symptoms warrant the attention.

Best wishes on taking your journey down the mast cell pathway.
Lyn

Title: Re: Newbie but already responded : )
Post by Joan on 10/23/12 at 18:11:55

Lyn,
Thanks for posting that. Do you happen to know how quickly gelcaps dissolve in the stomach as opposed to regular capsules or tablets? I've always used quick dissolving tabs or liquid Benadryl in an emergency, but would like to get away from additives. I suppose I could put some in water and see, but thought I'd ask in case you or anyone else knows.

Title: Re: Newbie but already responded : )
Post by Doozlygirl on 10/23/12 at 20:29:12

Joan,
I don't use the fast melts or liquids as they are all loaded with additives known to degranulate. At one point I did look for disolving rates for zyrtec tablets and the liquid gels, but couldn't find any scientific information.

Several years ago, a pharmacist told me that ibuprofen gelcaps typically work faster than ibuprofen tablets, so I am going off of that concept. When I'm shocking, it takes only a few minutes for the dye free diphenhydramine gel caps to settle down my massive eruptive 'Big D' or stop my projectile vomitting.

I take the regular zyrtec tablets as scheduled meds, the Zyrtec liquid gels for breakthrough, and dye-free diphenhydramine liquid gels for emergencies.

I do get nervous about taking oral meds when I'm vomiting. I read that in the hospice community, they often use Benedryl gelcaps as suppositories or vaginal inserts. Compounding pharmamcies will even mix a blend of compazine, Benedryl and another med to use on end stage cancer patients. Alternative routes of administration are my Plan B, if the Benedryl gel caps doesn't work fast enough orally.

And oh, the Zyrtec commercials this past summer stated that zyrtec works much faster than Allegra. I read somewhere Allegra tablets can take between one and two hours to start working.

I don't know if putting the meds in water and seeing how fast they disolve in water is accurate to test dissolving in the stomach. I read that this is a myth and not helpful when assessing vitamins, as the stomach pH is between 2-2.5 and water is around 7. I suppose you could try doing it in some vinegar? Let me know if you perform some kitchen chemisty. :)

Take care, Lyn

Title: Re: Newbie but already responded : )
Post by MarciaB on 10/24/12 at 03:27:24

Wow. Thanks Lyn. You just saved me a lot of time trying to figure all this out. :)

One of the reasons I liked Wal-zyr is because I get energy from corn starch and that's the first ingredient. I'm not sure if that's a good source of energy tho. It could be an excitotoxin for me. HFCS energizes me to the point where I really can not sit still. I was taking Infant's liquid iron when I figured this one out. But as a PWC (Person with CFS) I'm always happy to find an energy source.

It's been exciting not to have to lay down most of the time from my POTS / hypoperfusion. Before I started these meds, I could stay upright but I felt horrible due to petite mals. I'm sure most people probably just thought I was being a whiner or difficult when these were happening. In fact, I just ran into this when I was having a petite mal and had to eat and lay down for 20 minutes. ::)

I'm not sure how they did it but only a few people in my life have recognized when I'm having a petite mal. My mother, one of my doctors and one friend who was trained in special ed. I'm assuming I lose all expression from my face. I can still talk but I'm whiney. Part of my brain has checked out so my answers are whatever pops into my head. :-?

This and my sob, if I'm up too long, have lessened in the last 6 weeks but I realize that my energy level and mental clarity aren't as good as they could be. So I want to look at this more.

I'm not sure where to find that list of common mast cell degranulators or whatever it's called yet. Is there a section here on basic mast cell info and how it all works ? Pics are good as I'm a visual learner.

I'm learing too that I don't do well with too much Benadryl.Or maybe it's the Target Dye Free Brand ? It feel like it dries out my brain ... lol ...

tx again ... Marcia

Title: Re: Newbie but already responded : )
Post by Joan on 10/24/12 at 04:54:10

It's hard to know what the pH is in our stomachs with the kinds of meds we take, so I suppose we have to go by personal experience.

Allegra does take longer than Zyrtec to begin working. Be careful about compazine. It's not recommended for mast cell patients.

At the hospital, I found that IV Benadryl contained a preservative, but the injectable didn't.

Title: Re: Newbie but already responded : )
Post by Doozlygirl on 10/24/12 at 08:32:06

Joan,
Oh, I didn't mention the compazine/benedryl mix for us mast cell patients, just mentioned it as an example how there are different routes of administration that are used in other patient populations and maybe this would work for us, too. Sorry for the confusion.

I hear ya on the pH topic for us,too. Just before I learned of mast cell issues I spent months weening off of my PPI due to symptoms I thought were coming from the low pH. And now add in all this H2....

I learned that IV Benedryl can also be injected IM, one into the veins and the other in the muscle. Parke Davies makes two versions of their injectable Benedryl and one contains benzethonium chloride as an antigemacidal agent while the other doesn't have such an agent. I'll have to go back and see if the one with the benzethonium chloride is a multi dose vial. Single dose vials or syringes come without antimicrobial preservatives seen in multi-dose vials.

Title: Re: Newbie but already responded : )
Post by Doozlygirl on 10/24/12 at 09:02:52

Marcia,
Glad to her about your extra boost of energy with those products. I am in no way trying to sway you off of any meds that are working for you.

I just wish there was something out there alerting me to additives. Everytime I suspected additives I couldn't find anything to back it up, at least not until I began dissecting the various lists of degranulators and inactive ingredients in my meds, foods and personal care products. It wasn't until I began stripping away these additives that I could unravel my symptoms. I now know I was having low grade anaphylaxis everyday, with occasional bouts of higher stage anaphylaxis. Eliminating these known triggers helped me out of that pattern, where my reactions would have a beginning and an end.

In case this may help you, here is the list of ingredients in the Target dye free liquid elixir.
anhydrous citric acid Causes Direct Histamine Release
carboxymethylcellulose dosdium
flavors Mast Cell Degranulator
glycerin
potassium citrate
purified water
sodium benzoate Mast Cell Degranulator
sorbitol Sugar Alcohol=MC Degranulator
sucralose

If those ingredients don't cause an issue for you, then you are good to go. Just keep this in mind as you move through your own journey.

There are multiple lists of degranulators out on the web, some better than others. I have yet to find a comprehensive list explaining each of these ingredients, but I am compiling a spreadsheet of my own encompassing it all.

Meanwhile start with 1) TMS Emergency sheets 2) low histamine diet from the urticaria site and 3) degranulator list from www.Mastokids.org site. giving you a good start. On www.TMSforacure.org, you'll find 2 solid sources. One is a blue emergency room trifold pamphlet and the other is a list of meds to NOT take in their Emergency Files.

Happy reading,
Lyn

Title: Re: Newbie but already responded : )
Post by MarciaB on 10/24/12 at 12:29:06

I don't know whether to laugh or cry. :-?

I just checked out the low histamine diet list and I eat more from the bad list than the good list. Between the low oxalate diet, hyperinsulinemia and the Paleo diet, there goes the rest of it. ;D I'm a real pita.

I actually feel best eating wild sea caught scallops, king crab, fresh salmon, fresh tuna, etc. Fish and grass fed lamb are the only meats I can eat right now. Beef tears up my stomach and causes horrible pain for days. I haven't tried duck, deer or rabbit tho.

I have mcs (multiple chemical sensitivity). Is that common in mast cell disorders ?
So I can't eat meats that are wrapped in plastic or have come into contact with the white meat wrapping paper. All canned foods have been out of my diet for 10 years because I can taste the can. I had to stop using my stainless steel pots and pans last year because I can taste the metal.

I eat egg yolks only because I produce antibodies to egg whites. I was eating them raw in homemade mayonaise when that happened.

So, is this one of those things where we use it as a guideline because some things may not apply ? My concern is that I know many of my triggers because they're obvious but I wouldn't know where to begin eliminating high histamine foods and still find enough to eat. And I have reactions to some foods on the ok side.

Should I just watch for mast cell reaction signs ? I'm thinking, FM, IC, pelvic pain and "normal" allergic reactions. I'm not sure what other conditions are connected.
I have no idea why my oi is better on the mc meds but I need to take the Wal-zyr throughout the day.

As in, I know that vinegar is out for me because of throat and tongue swelling. I know I react to tomatoes and bacon with FM pain. Chocolate 8-)
and certain nuts (cashews, pecans, pistachios, almonds) and peanuts cause pelvic pain. Walnuts cause tongue sores if I eat more than 3 - 4 at a time. Brazil nuts are ok. Soy causes phlegm.

Yada yada .. So these are my obvious mast cell triggers.

Fwiw tho SOME but not most of my reactions have been known to change. I was eating Jungle peanuts Sept - Dec 2011 without any reaction. Then I started getting pelvic pain everytime. This was a new peanut for me tho.

If I don't eat pineapple for a few weeks my tongue burns when I first eat it again. This goes away within 24 - 48 hours and I can eat all I want. :-? Wuz up with that ? :-/

Fwiw, I read that we react badly to heat but I stopped reacting to heat about 3 - 4 years ago. I feel great in the sun now. I could stay out in it for hours if I wasn't getting sunburned. Being inside in the heat
with the windows closed isn't as good tho. It feels like the air is contaminated and I can't breath. I keep it about 78 degrees..

I couldn't tell you why tho. At that time I'd already been gfcf, etc for 3 - 4 years and my obvious candida signs were gone even tho my stool tests said I still had a slight problem. I became totally post menopausal last year but my estrogen was almost wiped out by then. I switched to a paleo/low oxalate diet. And I started sweating like a normal person too. Sorry I can't give you a better answer.

Thanks for all the help. Sorry for the book. Tc .. M

Title: Re: Newbie but already responded : )
Post by MarciaB on 10/24/12 at 13:10:05

I'm back. I'm just trying to get over my initial rookie reaction to another diet. Lol.

Thanks for the info Lyn. I found the tms emergency guidelines. I wasn't sure which urticaria site to use so I googled urticaria histamine diet and looked at the first one that popped up.

I'm not having all the common mast cell reactions like flushing, heat intolerance or
some of the intolerances listed. But I'm in there with fm, bladder pain, allergies to most things on earth, pelvic pain and pots.

I just wonder if my labs will show a mast cell disorder.

That's as far as I got but I'm very grateful for the info. I'm feeling overwhelmed. I was reading wiki today too to try to get a grasp on mast cells. Oh, I have a drs appt set for 11/13 now. He's just a local allergist but we'll see. I need someone local to monitor my anaphylaxis now.

I live in central fl so I'll be watching Sandy for the next 2 - 3 days. We're expecting waves between 8 - 20 ft. I'll be checking those out from the shore not the water. 8-)

Tc .. Marcia

Title: Re: Newbie but already responded : )
Post by Doozlygirl on 10/24/12 at 18:28:21

Oh, Marcia, I intended to add in the link. Sorry I missed that.
http://www.urticaria.thunderworksinc.com/pages/lowhistamine.htm

Don't fret too much about the low histamine diet, stress can make you flare. :( Just do what you can and read up so you may recognize what could be a trigger for you. Some also have issues with salicylates, as Pam mentioned. Some have started out with a low histamine diet for a while then slowly added in new foods. Others have already sorted out what works for them and pay attention when they add something new. All this is so induvidualized, so there is no right or wrong. If you feel your bucket is too full, then you may need to make more drastic changes. All this is so overwhelming, but you are well on your mast cell journey.

Lyn

Title: Re: Newbie but already responded : )
Post by MarciaB on 10/25/12 at 08:57:29

Hi again,

I'm still reading ... Of course.

But I saw on the urticaria website that fermented foods were
high histamine. Does this mean that the coconut kefir I make using fresh young coconut and Metagenics probiotics is high histamine too ? Or is that really fermented ?

I only let it sit out for 28 hours tops so it doesn't change to vinegar. The bacteria are alive and actively eating the sugars in the coconut water when I refrigerate it. I'm getting confused between fermentation and simply feeding bacteria and allowing them to grow.

Eta. I just remembered that the co2 released when bacteria eat causes natural carbonation. Is that a factor ? My kefir is always fluffed up a bit when it's ready.
I stir it to remove the air tho.

Since I'm not swollen anywhere I think I'm ok. I'm eating some today that I made 2 days ago and so far so good.

I used to make kombucha tea and ferment veggies and I could tell by smell when
these were too vinegary. Is that what they consider high histamine ? I was swollen all the time back then so I couldn't tell you if I reacted. Fwiw, making kombucha was fun but I never saw any health improvements.

Thanks .. Marcia

Title: Re: Newbie but already responded : )
Post by PamH on 10/25/12 at 10:12:47

Marcia,
Perhaps you should try the elimination diet. Directions are here on the forum. Basically you stop everything except for a few items. You give your body time to rest and heal, like a week then you only add one thing back in at a time. That way you have total control over what goes in your body and can track how you feel with what you take in. Every few days you only add one item. If you react you remove it and wait a few days and try something else.
It is not fun, but very productive!

For the Kefir, Even if it is not furmented, it is most likey growing histamines. I can't eat anything furmented without have a bad reaction. If you have mast cell issues you may have to give all that up. I do know people on the forum take probiotics, however the last time I took them I had a bad reaction.
Leftovers, and any thing cooked and not eaten NEEDS to be frozen immediately to prevent histamine growth. (esp. meats)
"Foods containing histamine—Aged protein containing foods and fermented foods commonly have increased histamine levels."
Here is a link to a good site:
http://www.urticaria.thunderworksinc.com/pages/lowhistamine.htm

I really don't know if coconut is high in histamine...I do know it IS high in salicylates, so I stay away from it for that reason.
You asked::: I just remembered that the co2 released when bacteria eat causes natural carbonation
Carbonation plays a huge roll in IC-It can make the bladder hurt. Because it is acidic-I was taught this just last week someone on the forum connected the dots for me! I couln't figure out why I hurt from drinking an all natural soda- with no preservatives...its the carbonation causing the problems. You should look up the connection of IC with carbonation-It is very eye opening.
It sounds like you are doing a lot to try to help yourself heal, however doing the elemination diet would be very basic and give you a little more control.

Title: Re: Newbie but already responded : )
Post by MarciaB on 10/25/12 at 11:30:46

Hi PAM,

Thanks. That's probably what I need to do at this point. I'm on the Wahls / low oxalate diet now because I eliminated all the foods that I knew I reacted too. I had no idea that POTS could be from an allergy.

I knew the throat swelling was from allergies but I thought it was relatively harmless as long as Benadryl took care of it. ::)

I'm still digesting the part about carbonation and IC. Sorry to hear it bothered you. I've had some homemade soda before too but can't remember getting bladder pain from it. But then again, I wasn't looking. Thanks ...

Before I forget, I was googling fermentation and it occured to me that the bacteria in our guts are fermenting (breaking down foods via bacteria and yeast) foods all the time. So does this mean that we're getting histamine from that too ? Add my gastroparesis and lack of digestive enzymes and I've got a non stop histamine source. :o

I can't fast due to hypoglycemia and seizures but I wonder if that would help reduce our histamine levels. OK, maybe I could if I stayed on seizure meds the whole time.

tc .. Marcia

Title: Re: Newbie but already responded : )
Post by PamH on 10/25/12 at 13:34:01

Marcia,
I can't fast because I'm hungery all the time!!! ;D
I don't know if we have a constant histamine source, by just digesting foods, it does make sence though! Maybe someone that knows more about that will respond!
I know people with mast cell issues have problems with the mast cells degranulating and letting the histamines out and/or having too many mast cells that don't behave normally. This is the reason the antihistamines make us feel better, because it is limiting the degranulation of the mast cells.
I hope we have found some more pieces to your puzzle!

Title: Re: Newbie but already responded : )
Post by MarciaB on 10/26/12 at 06:50:23

Hi PAM,

You sound like me. I'm always eating something. Are you a celiac ? I suspect that's why I do this. My family says I've been like this since I was a kid. Grazing is what they called it.

When I get a chance I want to post my question about other forms of ferments that may lead to histamine later. I was wondering if this is one of the reasons I have so many problems with beans and soaked nuts and seeds too. They seem to ferment or smell vinegary when I soak them. And I was soaking them to make them easier to digest. ::)

I need to look at yeast free diets or yeast allergies.

tx ... Marcia

Title: Re: Newbie but already responded : )
Post by MarciaB on 11/07/12 at 02:01:55

Wanted to let you know I had my first negative diy poor man's tilt table test yesterday. 8-)

Thanks everyone !

My hr was 118 prior to test because my Wal-zyr hadn't kicked in yet.
I rested for an hour so my body could recover.

During my diy pmttt my hr only got up to 90 after 13 minutes. No petite mal or sob. No bp drop after 3 minutes either.

I did still get feelings of hypoperfusion but I'm seriously deconditioned from having pots for 23 years.

Still too early to call a success but I just had to tell you. 8-)

Tc .. Marcia

Title: Re: Newbie but already responded : )
Post by MarciaB on 12/03/12 at 13:56:02

I started taking mylan montelukast (generic singulair) 5 mg chewables today. I had 1 at 7:40 pm and didn't get sick so I had a second 5 mg about 15 minutes ago. My script calls for 10 mg daily.

It coud be my imagination but it feels like my lungs are working better already. :-? I have angioedema (vulvodynia, pots, etc ) most / all ? of the time so maybe it is helping already. It would be great to have a more permanent relief from these symptoms without needing to take so much zyrtec throughout the day.

I didn't see any gluten or dairy listed in the ingredients. I know that the 4 & 5 mg brand name singulair are gfcf but I couldn't specifically find this info on this med. My co pay on this was low so that part was nice.

I'll let you know how I do. Tc .. Marcia

Title: Re: Newbie but already responded : )
Post by iamnotalone on 12/03/12 at 15:34:57

Marcia;
What is gfcf ? I have been on singulair for about 2 yr.s now, & it only became generic recently- boy was my wallet happy ! ;)
Could you ask your pharmacist for info on it ?
lori

Title: Re: Newbie but already responded : )
Post by MarciaB on 12/03/12 at 16:08:20

Hi lori,

How long before you noticed an improvement on Singulair ? When I googled it, it said it would take a few days or weeks. I've been responding quickly to allergy meds since I started this protocal in Sept tho.

Gfcf = gluten free casein free. G always stands for gluten but the c can mean corn but is assumed to stand or casein unless corn is specified. This is common terminology for elimination diets.

I could ask the pharmacist but since I'm not reacting I feel safe that it's gfcf. For now anyways. If I react, I'll call and verify this.

Saving money this time of year is especially nice .. 8-)

Tc .. Marcia

Title: Re: Newbie but already responded : )
Post by Joan on 12/03/12 at 16:36:16

It works for my son within 24 hours.

Title: Re: Newbie but already responded : )
Post by MarciaB on 12/03/12 at 23:19:31

Cool. At least that's shorter than other times I've seen listed.

I'm still breathing better. Honestly I had no idea lungs could work this easily. I can't remember the last time these didn't feel tight. I thought it was normal to feel tightness when breathing. :-/

I wonder what an inhaler or nebulizer would do to me ?

Tc .. Marcia

Title: Re: Newbie but already responded : )
Post by iamnotalone on 12/04/12 at 05:16:02

Hi Marcia;
Singulair worked pretty quickly for me, I can't remember exactly, but I'd say within a week. (I always tell people not to start a question to me with "Do you remember ;)) I have asthma & have been on advair, rescue inhalers, & a nebulizer for years. I almost never need to use the nebulizer anymore, & went from using advair 2x, to once a day. I find I only need the rescue inhaler -Pro Air- & nebulizer, when I get a bad cold/flu/allergy season.
I figured the gf was gluten free, but couldn't figure out the rest. Thanks. I am learning to get out of stores when I can't take it anymore. The smells are getting to me more than they used to, & I can tell a smoker from a yard away :P. I also feel the crowds & stress add to the "bucket".
I try to go early on a weekday.
take care,
lori

Title: Re: Newbie but already responded : )
Post by Joan on 12/04/12 at 12:31:11

There are a number of oral inhalers. They contain different types of drugs and have different inert ingredients and side effects. The solutions for nebulizer have fewer ingredients, as they don't need propellants and other delivery systems, but always check packages and with the pharmacist.

Your doctor should have some ideas of meds that would be complementary to what you're already taken. Do you have a peak flow meter? It's a gadget you blow into and can tell how open your airways are. It's a good gauge if you're having some asthma. We used one with our son as the tool to determine if he needed to go on nebulizer treatments.

Sometimes I use an inhaled steroid (Flovent), but I'm sure it has something in it besides steroid since it leaves a white residue on the spacer I use.

Albuterol and other similar meds can cause some tachycardia and other side effects. Xopenex has fewer side effects. Both are bronchodilators and available by prescription.

Title: Re: Newbie but already responded : )
Post by MarciaB on 12/13/12 at 11:41:54

Hi Joan,

Sorry I didn't reply earlier. I'm in over my head in masto land tho.

I just used Xopenex at my dr office while doing a breath test.
I didn't react when I was there but did afterwards. I got so shakey I had to take a Klonopin.

It didn't help me breath any better either tho. My lungs still felt tight.

Singulair eliminated the tightness in my lungs but it may have contributed to seizure like feelings too. I'm off it for now but plan on retrying a lesser dose later.

I'm on Orapred for the next 3 day. It feels like it's helping my throat swelling but not the raw feeling. Of couse since it was swollen I didn't realize it felt raw / damaged. The xopenex cause throat burning and drainage within a few minutes of using it yesterday. So that didn't help.

My doc wants me on zantac or prevacid to see if what I'm feeling is from gerd. I don't feel like I get gerd often enough to use this but I'm finding out that sometimes using a med shows me I did need it. ::)

tc ... Marcia

Title: Re: Newbie but already responded : )
Post by zippy890 on 12/17/12 at 07:38:07

Hi MarciaB,

Zippy here. I've been a PWC since 1984. I started my "career" classically enough, bad case of Mono., never recovered, slow decent into CFS. My mast cell type symptoms began in about 1991. I discovered that I might have a mast cell disorder about 7 years ago, reading CFSExperimental. I've been an active Cheney patient since 2002, before he had his heart transplant.

Other than being GFCF, the low histamine diet has been the only thing that has helped me. I am cognisant of oxalates though, and don't eat anything on that superhigh list. Meds. help me a lot. I'm still experimenting with them. I get a pure Doxepin Elixir from Wellness Pharm. in Birmingham, AL (per Cheney). It's $$$, but it works for me. (You must specify NO FAVORING and NO STEVIA though). I tried to switch to the same dose from Wal-Mart, but it had a yellow dye that blew me into orbit with burning skin. So excipients are important.

I used to brew kombucha, milk kefir, tibicos, sauerkraut, the whole nine yards. I loved it. But in the end, it left me MUCH worse with my mast cell disorder. One of my life's goals is to be able to eat that stuff again. And chololate. :)

I read at Pheonix Rising some too. Seems like I know you from somewhere ?

Anyway, glad to see a fellow PWC here. I think mast cells disorders are a common end point for some PWC's. But fortunately, we don't have to worry about any of this, as CFS is not a "real" disease of any consequence.

Todd in Tenn.

Title: Re: Newbie but already responded : )
Post by MarciaB on 12/20/12 at 13:55:37

HI Zippy,

Good to know we don't have to worry about cfs. ;D

I just found the web in 2005 after my gp told me to go on an elimination diet which excluded wheat, dairy, etc. but not gluten. Within a few days, I no longer had narcolepsy or felt jittery all the time. I was so excited to finally find something that helped me after 15 1/2 years of just barely functioning with CFS. 8-)

While googling wheat free bread recipes I kept running into the word gluten. Everything I read about gluten intolerance rang a bell with me. After reacting so well to just eliminating wheat, I decided gluten was the next to go.

I started out joining a celiac forum, then other cfs forums.
I'm xchocoholic in pheonix rising. I wound up on the low ox board after getting a couple of kidney stones. My kidney stone problem appears more related to letting my urine get dark / not drinking enough water and not oxalates. But I'm still being careful.

I'm finding that I get pelvic and bladder pain from certain high ox foods and not others. I can eat pistachios and walnuts without getting pain but not chocolate, almonds or peanuts. I suspect there's a mast cell connection not oxalate.

We've both had quite the journey so far. I saw traditional doctors for 17 years then went the integrative doctor route. And while I learned a lot about my body, as did my doctor,
I just learned about mast cells recently. Apparently I'm more thick headed than other pwcs ... ::)

I've been on the paleo diet since 2008 and Wahls since Jan 2012. I'm monitoring my reactions for high histamine foods but am finding it hard to eliminate much more. Chocolate was eliminated again yesterday. :'(

I googled Doxepin. Good to hear it's working for you. It sounds like something that would knock me out. 25 mg of Vistaril knocked me out for 3 days ... ::)

Good luck on your journey. tc ... Marcia

Title: Re: Newbie but already responded : )
Post by MarciaB on 01/29/13 at 01:51:00

Just a quick update. Taking 25 - 40 mg of zyrtec (wal-zyr) was
making it too hard for me to think straight so I'm down to 10 mg per day now. It stopped working as well on my pelvic pain and oi too tho.

I'm still taking a tsp + of children's benadryl at night. And I'm using a children's chewable during the day for throat irritation. And taking NSAIDS for pain.

I'll be experimenting with holistic treatments next.

Oh and all those trigger foods I ate, nuts, teff (?) and chocolate, probably contributed to me getting more kidney stones which led to pyelonephritis and a trip to the er.

I'm back to avoiding these and other high ox foods for now.

I have leaky gut so I'm assuming going nuts, :D , and eating my known trigger foods wasn't such a good idea for me. Rats.

Tc .. Marcia

Title: Re: Newbie but already responded : )
Post by MarciaB on 02/04/13 at 08:48:39

I'm back. ::)

I'm using 5 mg at a time of Walzyr several times a day. 10 mg at a time was making me sleepy. I'm using between 10 - 20 mg daily.

I notice an improvement in my OI if I keep some zyrtec in me but not as much as I did initially. BUT I did myself in by eating known trigger foods and getting kidney stones and a bad kidney infection. :P

I still need to salt load too but I only use 2500 - 3000 mg daily. More makes me feel bad.

tc ... Marcia