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Are there any Mast Cell Activation remote consult practitioners

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Posted 8/2/2019 6:48 PM (GMT 0)
I saw in the forum where someone had posted about one doctor who offers remote consult for mast cell activation.

I was wondering if anyone knew of any others?

Thanks for your time.
Posted 8/2/2019 6:53 PM (GMT 0)
I’m not sure which one was already listed but the lady from MastCell360 seems very knowledgeable and has been on with Betterhealthguy
Posted 8/2/2019 7:05 PM (GMT 0)
Has anyone used her? She is super expensive and requires genetic testing; which means a phone appointment costs $700.
Posted 8/2/2019 9:21 PM (GMT 0)
Yikes. I haven’t so I can’t vouch. Just thought she sounded knowledgeable from her site. I’d get Neil Nathan book Toxic. It lays out a pretty good plan of attack.

Starts with 500 mg Quercetin 30 mins before a meal then goes up to 500 before every meal if they tolerate it.

Make sure to get hypoallergenic as mast cell patients are sensitive to fillers
Posted 8/2/2019 10:04 PM (GMT 0)
Thanks but she can't take any supplement, vitamin or prescription.
Posted 8/2/2019 11:18 PM (GMT 0)
IV C could lower histamine levels
Posted 8/2/2019 11:21 PM (GMT 0)

cakegirl said...
Has anyone used her? She is super expensive and requires genetic testing; which means a phone appointment costs $700.

I have not used her but have emailed with her. If you’ve done 23andme you can probably bypass the genetic testing.
Posted 8/3/2019 1:11 AM (GMT 0)
Do you have any large teaching hospitals near you? They tend to have doctors that are more cutting edge that learn from the best. You can call immunologists offices and ask if they are familiar with mast cell activation disorders, could be a worthwhile starting point.
Posted 8/3/2019 2:38 AM (GMT 0)
She could not tolerate an IV of vitamin C or quercetin or any other vitamin. I've tried them all.

I did call around and there were only two allergists who were familiar with mast cell disorders. We went to one but he was awful (super rude). And none of them have ever seen neurological reactions from mast cells being activated. The other problem is that allergists can only offer drugs and she doesn't tolerate drugs or supplements. He prescribed cromolyn and Claritin. Both worked for a while last year. Now, both cause reactions. There's really no point in even going to a regular allergist.

I just wonder if the mastcell360 doctor has any other remedies besides supplements. Everyone it seems is pushing supplements, even for mast cell activation patients who don't tolerate supplements. Having constant mast cell reactions can't be healthy.
Posted 8/3/2019 3:44 AM (GMT 0)
Have you tried compounding pharmacy for antihistamines if she can’t tolerate supplements?
Posted 8/3/2019 8:47 AM (GMT 0)
I just started reading about MCAS but if she cant tolerate any supplements, the only other thing I can think about is trying a low histamine diet.

It wouldnt hurt to work with sleep, mindfulless and other things that help general health.
Posted 8/3/2019 10:05 AM (GMT 0)

cakegirl said...
She could not tolerate an IV of vitamin C or quercetin or any other vitamin. I've tried them all.

I did call around and there were only two allergists who were familiar with mast cell disorders. We went to one but he was awful (super rude). And none of them have ever seen neurological reactions from mast cells being activated. The other problem is that allergists can only offer drugs and she doesn't tolerate drugs or supplements. He prescribed cromolyn and Claritin. Both worked for a while last year. Now, both cause reactions. There's really no point in even going to a regular allergist.

I just wonder if the mastcell360 doctor has any other remedies besides supplements. Everyone it seems is pushing supplements, even for mast cell activation patients who don't tolerate supplements. Having constant mast cell reactions can't be healthy.

I would email her. She answered my question with a very detailed response.
Posted 8/3/2019 3:35 PM (GMT 0)

Brab8878 said...
Have you tried compounding pharmacy for antihistamines if she can’t tolerate supplements?

Yep -- the Cromolyn was compounded and she's now very reactive to it.
But antihistamines aren't really a solution and they only cover up your issues and will prevent you from knowing food triggers and other triggers.
She isn't going to be able to tolerate any RX as long as her gut is leaky. I need to solve her leaky gut.
Posted 8/3/2019 4:03 PM (GMT 0)
Other ideas.

DNRS program to calm down her nervous system so she doesn’t react to everything.

Look into Gentlederm. It’s a cream that has an active form of luteolin in it that is very good for mast cells.
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