Mast cell activation syndrome is not what it seems

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MCASMike

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126
Learner1 said:
Just because you stop eating high oxalate foods doesn't mean an oxalate problem goes away. One must bind the minerals going in with citrate, ensure B6 levels are sufficient, have adequate D3 and K2, and be on a low oxalate diet to for a lengthy period of time, possibly 2 to 10 years, or forever if one has the genes for primary oxaluria.
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I don't have the symptoms of oxaluria and the symptoms that could have been consistent with it cleared up after I went on the MCAS protocol (with my diet not changing, other than adding the Mexican oregano and celery seed). Even when I was on an oxlate-rich diet, I didn't have most of the oxluria symptoms. Triggers for what I now believe to be MCAS appear to have been too little sleep or disrupted sleep patterns, fried food, dust (even just walking into a used book store would set off symptoms), cold or heat, motion (sometimes I can't even ride in a car to a local destination), flickering lights, too much physical activity, and perfume. I don't urinate much and it has always seemed normal other than a couple times I got the flu (it was darker color). Thanks.
 
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MCASMike

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Strawberry said:
What mg of quercitin?
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Do you know about rutin? It's chemically nearly identical to quercitin and has some similar qualities, as one would expect. For some reason, if you buy luteolin pills, there is usually rutin in there in the same amount. I decided to try rutin in larger amounts than luteolin to see what would happen, so after a month or so I'll update if there were any noticeable effects.
 
godlovesatrier

godlovesatrier

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Solgar Querticin has bromelain, rutin and others in it:

https://solgar.co.uk/products/solgar-quercetin-complex-with-ester-c-plus-vegetable-capsules

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Strawberry

Strawberry

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MCASMike said:
Do you know about rutin? It's chemically nearly identical to quercitin and has some similar qualities, as one would expect. For some reason, if you buy luteolin pills, there is usually rutin in there in the same amount. I decided to try rutin in larger amounts than luteolin to see what would happen, so after a month or so I'll update if there were any noticeable effects.
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I take neuroprotek so I’m on all 3. I saw a Facebook post saying they didn’t improve until they got to 1000 mg quercetin, so I bought quercetin. It does help me clean/pack without the MCAS reactions, but I’m still having reactions in the middle of the night. Do you have a recommendation for Rutin? Id like to find something I can take at night to block MCAS. My diet needs improvement (I’m not eating enough), but one thing at a time.
 
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MCASMike

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126
Strawberry said:
I take neuroprotek so I’m on all 3. I saw a Facebook post saying they didn’t improve until they got to 1000 mg quercetin, so I bought quercetin. It does help me clean/pack without the MCAS reactions, but I’m still having reactions in the middle of the night. Do you have a recommendation for Rutin? Id like to find something I can take at night to block MCAS. My diet needs improvement (I’m not eating enough), but one thing at a time.
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What are your symptoms at night, MCAS-wise? My main issues now seem to be dry throat/cough and sleeplessness due to temperature that is too high or low. Wearing a mask or sleeping with a light blanket over my head (always with an air pocket, never directly on my nose) seems to cure this. As to the temperature, I have to use different blankets/clothing to get the temperature right, which isn't always easy to figure out when you are half asleep. I can't say rutin is doing much if anything yet for me, but if I notice anything new I'll update.
 
CedarHome

CedarHome

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131
I just started Neuroprotek again.... when it was originally prescribed the dr. said 6 caps a day.
1 cap= 100 mg luetolin
70 mg quercetin
30 mg rutin

I also have some powdered quercetin which is 500 mg/ per 1/4 tsp.

I wonder if you can get the same effect as Neuroprotek by taking the elements separately.??

I've never noticed a huge difference when I was taking only powered quercetin- whether I take it or not.

But that was before I got rid of nightshades (and everything else fun) in what I eat. Maybe the background noise level is reduced and I'll be able to see changes more clearly.

Also, now that the OURA ring is coming maybe it'll help me track if I can make changes 1x at a time. :nerd:
 
Strawberry

Strawberry

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MCASMike said:
What are your symptoms at night, MCAS-wise?
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Sudden sneezing, sinuses closing up, and lungs tightening and difficulty breathing with popping noises. I don’t sleep with my window open any more, so my environment is controlled.

MCASMike said:
I can't say rutin is doing much if anything yet for me, but if I notice anything new I'll update.
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Thanks!


CedarHome said:
I wonder if you can get the same effect as Neuroprotek by taking the elements separately.??
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Supposedly you can. Theoharides point was to make neuroprotek as free from impurities as possible. But it doesn’t mean you can’t make your own. I’d just look up safe levels before getting too creative.
 
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MCASMike

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126
Strawberry said:
Sudden sneezing, sinuses closing up, and lungs tightening and difficulty breathing with popping noises. I don’t sleep with my window open any more, so my environment is controlled.
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I use cromolyn nasal spray before I go to bed (for sinus issues) and now I always sleep on my side (usually the left side). If I don't, I will sometimes wake up gasping for breath, which I think is a broncospasm. Sometimes I do get a sudden urge to sneeze, which usually results in one or two, but then it stops. When I first lie down, my eyes often tear up, but only a little these days so it hasn't been an issue in the last month or so (if it is an issue, I'd use the ketotifen eye drops).
 
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MCASMike

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126
Strawberry said:
I also use nasalcrom and ketotifen. But blockers aren’t working well for stopping reactions, so moving onto stabilizing.... Or DAO or something. I still have lots of research to do.
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Have you tried the luteolin/rutin supplements? I do think those helped, at least one by Horbaach per day would be the least I would want to take, based upon what I've observed so far (I haven't tried the other brands).
 
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MCASMike

Senior Member
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126
Nettle said:
My MCAS turned out be be hidden peridontal disease (hidden = no symptoms) once I got that under control the MCAS wasn't really noticeable.
I was at my worst at that point (90% house bound) as I had MCAS, POTS and CFS
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How did you get it under control, if you don't mind my asking?
 
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Nettle

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MCASMike said:
How did you get it under control, if you don't mind my asking?
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I went to a new dentist who told me my teeth were all looking good then took a look at the xray and said Hold on you've got peridontal disease. I have no visible receding gums or bleeding gums.

I have to go for three monthly cleans with the hygenist and use inter dental brushes every day.
I use a different brush in between the good areas and bad pockets so as not to spread the bad bacteria around. I dip the wee brushes in antibacterial mouthwash in the areas that are a bit smelly (indicating bad bacteria) and don't do this in the other areas as I don't want to kill the good bacteria. I also floss.

I've been chewing on the Japanese probiotic Miyarisan which i Believe has made a big difference. I don't believe all cases of MCAS are cause by this but worth ruling it out as it's quite an easy fix.
 
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