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Supplements instead of Singulair and Cromoglycate? (Read 7709 times)
jrsubs
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Supplements instead of Singulair and Cromoglycate?
09/19/11 at 22:46:41
 
I've just joined this list after recently finding I was exploding with inflammation that my doctor didn't know what to do about and I have long-standing problems that all seem to be explained by a possible mast cell disorder.  I don't seem to be able to tolerate Singulair (13th day and side effects not improving) and cromoglycate and other meds mentioned here  like Zyflo, Accolate, Ketotifen are not available in Australia. I think cromoglycate can be specially imported, but doc doesn't know how to do it.

So I am aiming to try supplements. Possible alternate meds I'm still reading up on:

Hesperidin
Butterbur
Chondroitin Sulphate
Rutin
Quercitin
Melatonin
(Doxepin)  


My question is -- does anyone have any experience with Hesperidin, in particular HMC Hesperidin that is reputed to be a mast cell stabiliser?

Thanks.

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Godsgal
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Re: Supplements instead of Singulair and Cromoglycate?
Reply #1 - 09/20/11 at 13:56:49
 
this really doesn't matter much but my friend has MCAD and tried quercetin and she said it didn't help at all.  Everyone is different though.  I would love to use natural supplements but I'm not in that position.  I have 2 little ones and I need to be better now and not later after experimenting forever.  Hope something you try helps.  Timed release vitamin C according to Dr. Afrin can help as well.
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MastoGem
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Re: Supplements instead of Singulair and Cromoglycate?
Reply #2 - 10/10/11 at 07:17:02
 
I've found Dr. Theoharide's Quercetin and Chondroitin Sulfate formula called ArthoSoft to be amazing!  The Vit C I started taking about the same time may also be a part of it too.  But I've been feeling really good and I haven't need any antihistamines.  I am on Singulair, Gastrocrom and Zantac still.  Good luck with the natural approach!! Please keep in touch and let us and know how it goes with that!
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kimtg68
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Re: Supplements instead of Singulair and Cromoglycate?
Reply #3 - 10/10/11 at 10:25:56
 
Godsgal,
What is the target symptom that increasing vitamin c is supposed to help? What dose is recommeded?
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iamnotalone
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Re: Supplements instead of Singulair and Cromoglycate?
Reply #4 - 10/11/11 at 15:37:50
 
MastoGem;
Do you have TMEP ? I cant remember who does here...
I looked into quercitin,(mightve been on the Agonot formula site)& it said that the quality/source of quercitin makess a Big difference. I almost bought some at the nutrition store, & am glad I held off. The inflammation in my hands gives me the most trouble lately; at least its the symptom I hate the most Angry ! Now that Ive seen a few positives comments on Dr. Theoharides formula, it seems worth a try.  
JRSUBS; cant remember what alls in it, but maybe you can get it thru mailorder ?
Good luck all, wishing for us all to find some relief <3
lori
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Sandi
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Re: Supplements instead of Singulair and Cromoglycate?
Reply #5 - 10/11/11 at 17:26:12
 
Just keep in mind just like medications no vitamin is the same. Quercertin can come from all sorts of sources. I'm not on quercertin at the moment I was trialing a brand but just did not have enough stability in symptoms to be sure it wasn't triggering me. My trust would be in Dr Theo for sure, I was leary of his if I recall because it had chamomile in it. That's an allergy for me. A lot of herbs are just pollen weeds to my system! Vitamin C is thought to help stabilize mast cells too.  Look up Dr Theos research on quercertin he's done a lot. The neat thing with his algonot was the "mix" leutin along with quercertin and the ability to stabilize mast cells. Again we are all different. Be careful with chondrotin sulfate if you have food triggers, you are looking at a lot of sorces there, pork, bovine, fish, shark. I'm so done ever trying chondrotins/glucosamine/etc.!
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Godsgal
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Re: Supplements instead of Singulair and Cromoglycate?
Reply #6 - 10/27/11 at 04:21:01
 
On the vitamin C I know it is supposed to be time release and it's supposedly supposed to help calm mast cells.  I know my allergy office tells you to stop taking antihistamines & vitamin C before skin testing.  I'm sure that has something to do with it.  I can't remember the dosing on the vitamin C.  I'm going to look it up for you.
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Godsgal
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Re: Supplements instead of Singulair and Cromoglycate?
Reply #7 - 10/27/11 at 04:38:04
 
Just looked at Dr. Theo's formula the Neuroprotect one and saw some reviews on amazon that were positive.  It has the supplements you were looking for as mentioned quercetin, rutin, etc.  I would look at that.  It's not too expensive.  I'm thinking of trying it myself.
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LindaMar
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Re: Supplements instead of Singulair and Cromoglycate?
Reply #8 - 07/24/13 at 14:59:19
 
Hi,

As far as supplements, here is my list that works for me.

I prefer and do take Nature's Life Quercetin, 400 mgs. 2-4 times a day.  My MCAS doctor said to up it to 4, but I forget sometimes.  I wouldn't take it with Bromelain or any other ingredients, like Calcium

I didn't care for Rutin.  

I take NOW brand Butterbur and feverfew, 2 pills a day.  Like it!

And the jury's out on whether my Vit. C helps or bothers me.  But at one point I did like it.

That's about it for supplements.  
Oh, if I feel like I may be getting a cough, I take Black Elderberry, Nature's Answer.  Personally, I don't feel the natural stuff is enough, but is good to add in.

I also take the H1, H2's, stabilizers.  Then sometime I use Albuterol, Alaway eye drops, Nasalcrom nose spray and liquid Children's Benadryl.  And take adult compounded Benadryl every night, along with Singulair.

That's about it!  I'm hearing Xolair is suppsoed to be good.  I'm going to ask about it.

I also feel avoiding triggers, getting enough sleep and taking meds on time help. Wink
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Re: Supplements instead of Singulair and Cromoglycate?
Reply #9 - 07/25/13 at 03:28:38
 
In addition to vitamin C, there's some evidence that vitamins D3, B6 (pyroxidine), and E can help people like us:

http://www.jhoonline.org/content/pdf/1756-8722-4-10.pdf
http://www.ncbi.nlm.nih.gov/pubmed/21244748

I also recently learned that dehydration stimulates your brain to release histamine (causing headaches, changes in mood, etc...):

http://www.ncbi.nlm.nih.gov/pubmed/7720668
http://www.ncbi.nlm.nih.gov/pubmed/8033816

So... you might find it helpful to drink enough water and supplement with electrolytes (sodium, potassium, magnesium, etc...).  I'm starting to train for a marathon (I can still hardly believe it!) and I've found that it's very important to add electrolyte tablets to my water, take "salt" capsules, and use energy gels.

Other people have given you some good cautions, but I'd like to add one: if you've had problems with bleeding (nose bleeds, petecheiae, easy bruising) due to your mast cell disorder, I would steer clear of supplements that have blood thinning properties... vitamin E, fish oil, turmeric, garlic, flax oil, quercetin, bromelain, etc...  In fact, I feel better taking vitamin K, which is one of the few supplements that promotes coagulation Smiley  Otherwise, I've definitely found that vitamins D3 (4,000iu per day), C (1g per day), and B6 (100mg per day) help prevent symptoms.

Heather  
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