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Thanks to Everyone Who Helped Me - I Feel So Much Better Now (Read 1185 times)
Futurehope
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Thanks to Everyone Who Helped Me - I Feel So Much Better Now
04/14/13 at 13:28:05
 
Okay, it has been an ongoing saga about how to take pills, what pills to take, how much to take, what foods to avoid, etc., and I had been failing miserably even though it had been one year ago that I had seen Dr. Afrin for the first time.

Today, I'm really enjoying how I feel.

First off, I'm now taking:
Zantac 150 MG 2X/day
Allegra  180 MG 1X/day in the AM (with food, to avoid a headache)
Singulair 10 MG 1X/day
Hydroxyzine HCl 12.5 MG in the AM (1/2 of a 25 MG pill)
Hydroxyzine HCL 50 MG in the PM

And, per your suggestions, I have become very strict with avoiding foods that bother me.  This required some discipline because I have reacted to vinegar in the past, which means I need to avoid a lot of prepared foods including condiments, olives or pickles soaked in vinegar, salad dressings, etc.  I am also religiously avoiding anything with chemicals that I do not need, like coloring, flavoring, dyes, preservatives, etc.

I must say, I am feeling so much better, not perfect, but better.  I think I am on the right track with the food avoidances.  I may eat really boring food, but I feel so much better. Well, the Breyer's French vanilla ice cream was not that boring, LOL.

I would not have had the knowledge nor discipline to try all this without your constant encouragement.

So......thank you all from the bottom of my heart.  It really helps to hear from others who have been through all this.

On a totally different topic, I noticed the thread on Gandolinium (sp?) which is used with CT scans in order to visualize things better. The question was asked about others responses to this dye?  Apparently, many posters react and can go into anaphylaxis if not pre-medicated before its use.  

I had no problem whatsoever when Dr. Afrin called for a CT scan of my chest using this substance.  Because of my lack of reaction, I sometimes wonder if Dr. A has been diagnosed incorrectly?  Or maybe, I'm a leaker and not a shocker, right?  Can leakers eventually have an anaphylactic reaction, even if it had never occurred before? Thanks in advance.
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KatFromMD
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Re: Thanks to Everyone Who Helped Me - I Feel So Much Better Now
Reply #1 - 04/15/13 at 06:26:59
 
SO GLAD to hear that you're feeling better!!!  Yes, avoiding everything with vinegar (and soy sauce) cuts out a heck of a lot of foods, but it's worth it to not be in agony all the time!

I'm going to say it now while you're feeling well: don't be discouraged if you have a relapse at any point...it happens to all of us.  Just remember that you were able to get to a stable point, and you will again.

As for the contrast dye, I'm pretty sure I've had it with no problem.  We're all sensitive to different things, so you just don't know.  You're right that you're probably a leaker (as am I), not a shocker, though I've had a few episodes that were close to full-on anaphylaxis.  It can happen.

I'd say your improvement due to the elimination of high-histamine foods and additional antihistamines further supports Dr. A's diagnosis of mast cell problems.

Congrats on getting stable, and go ahead and ask for more thoughts if you need them when you're ready to try your next med change!!
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Anaphylaxing
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Re: Thanks to Everyone Who Helped Me - I Feel So Much Better Now
Reply #2 - 04/15/13 at 10:20:52
 
So glad you're doing a bit better!! Way to goo!

Agree with Kat, just because iodinated contrast is a known mast cell degranulator does not necessarily mean everyone will have issues with it. We are all unique Smiley It's just a probability and also how it behaves in vitro...

For CT it is iodinated contrast dye

For MRI it is gadolinium. So if you had a CT, you had the iodinated injected IV contrast which seems to cause more issues than the MRI contrast though both are a risk.....but like you said some of us have had it with no issues. Not me Wink
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Futurehope
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Re: Thanks to Everyone Who Helped Me - I Feel So Much Better Now
Reply #3 - 04/15/13 at 10:44:18
 
Ana,

I've had both dyes.  I'm sure of it.  I did fine with both.

Yes, it does help to remind myself that I could very well experience a flare again, and eventually get back to baseline.

Who else could understand the ongoing issues with having MCAS unless it is somebody who has been there?  Thanks again.

I mostly do not share all my foibles with others.  I feel they would not understand what I am talking about.
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