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Great story in Huffington Post (Read 3754 times)
texan1960
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Great story in Huffington Post
10/10/14 at 08:45:23
 
www.brynnsbubble.com
http://m.huffpost.com/us/entry/5948106?ncid=txtlnkusaolp00000592

Great story in Huffington Post! And a very encouraging blog from a young lady with mast cell disorder
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texan1960
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Re: Great story in Huffington Post
Reply #1 - 10/12/14 at 05:26:53
 
One thing I noticed in the story is that she has a benedryl iv... Got me thinking, we dont they use an antihistamine pump with this disease?
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texan1960
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Re: Great story in Huffington Post
Reply #2 - 10/13/14 at 08:29:25
 
Ahhh! Why don't they use them Shocked
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Joan
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Re: Great story in Huffington Post
Reply #3 - 11/01/14 at 21:05:35
 
I have to be careful, as IV Benadryl sometimes contains preservatives.  I've had a serious problem with it twice.  Very scary!  An IM Benadryl injection was not a problem and no problems with oral either.
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texan1960
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Re: Great story in Huffington Post
Reply #4 - 11/04/14 at 10:42:50
 
Drats!! I had one of those days where part of it I felt a little overnedicated then later in day wore off... Was just thinking would there be a better way to stay more even without taking antihist all day.
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Joan
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Re: Great story in Huffington Post
Reply #5 - 11/05/14 at 19:45:20
 
I know exactly what you mean.  Sometimes it just feels like too many antihistamines.  Just wondering if other meds might be helpful that address other mediators, or if a mast cell stabilizer, like ketotifen or gastrocrom might allow you to cut back on antihistamines.  I've found that for certain symptoms, Tylenol or other med that addresses prostaglandins is more helpful than antihistamines.  Some people find that the supplements, quercetin, luteolin, and rutin stabilize their mast cells.  I take turmeric with bromelain capsules that help a lot with inflammation.  Of course your doctor can tell you if there would be any contraindications for any change in meds or supplements.
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texan1960
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Re: Great story in Huffington Post
Reply #6 - 11/06/14 at 09:39:09
 
I am on ketotifen in day and doxepin at night. I have gastritis so take about 150 zantac during day... Of course benedryl in emergency. Have tried neuroprotek and did help but pricey.
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Joan
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Re: Great story in Huffington Post
Reply #7 - 11/06/14 at 10:58:58
 
On good days, I'm still taking 2 pills and 1-2 vials of cromolyn, twice a day.  More when I'm in a flare.

I wonder if your doctor could increase your dosage of one or more meds or add a long-acting H1 antihistamine in the morning to help you be more stable all day.  Most people take 150-300 mg. Zantac twice a day.

Some people benefit from buying and using a single ingredient in the Neuroprotek (cheaper that way), and some people have good luck with taking a lower dosage.  One person I know takes 2 Neuroprotek and 2 Fibroprotek/day, lower than the recommended dosage.  I did have luck with some symptoms when I took Quercetin alone for a couple of months.  I've since switched to turmeric, but plan to get back on Quercetin or one of Dr. Theo's formulas later in the winter to see if it'll help with my seasonal allergies next spring.

Some doctors are prescribing 5 mg. ketotifen and patients are having better luck with that.  I can get cromolyn sodium very cheap through my insurance so haven't tried the ketotifen.  Keep thinking I should try it, as those vials are so big when I have to travel.

This is all such "trial and error" to get stabilized.  Hope you can figure out something that works better!




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Re: Great story in Huffington Post
Reply #8 - 11/08/14 at 07:56:25
 
KissThanks for posting the article. My heart goes out to Brynn❤️

I have a question since quericin has been brought up in this thread...I am definitely one who is very salicylate sensitive. Would this put qeuricin on the back burner for me? Has anyone who has issues with plant based products used this with any success??

Also thought I'd share....I'M GOING TO SEE DR. AFRIN ON JANUARY 28th!!! Yeah!!!! Not sure what to expect, so I don't want to set my expectations too high, but boy am I excited!!!!
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Joan
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Re: Great story in Huffington Post
Reply #9 - 03/26/15 at 17:46:38
 
Didn't see the question earlier, but quercetin would not be recommended for anyone with salicylate sensitivity.  In fact bioflavonoids might need to be avoided.  You might want to google the topic, as there are a number of sites that list foods, spices, herbs, etc. that contain salicylates as well as processes that concentrate them in food, such as drying.
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