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Old 02-08-2016, 05:41 PM #31
DavidHC DavidHC is offline
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En Bloc,

Thanks for the encouragement, which is what it effectively is. I agree, obviously. How can it not be? It's already clear that it has a major role in all this, to what extent and precisely how, I can't say, no one can at this point. But that 'infection' is precisely how autoimmunity so often, perhaps if not always, begins is quite telling and worth remembering.

If nothing else, I'll solve or work to heal/improve my gut problems, and that alone is worth it. No one can truly be healthy without a healthy gut, and that's worth working toward.

Thanks again

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David,

I think this really may have an impact for you based upon some of your specific symptoms and reactions.

Autoimmune disorders are typically triggered by something and infections are at the top of the list. They don't have to be in the gut (mine was upper respiratory infection, same as many others I've talked to with Sjogren's), but it really doesn't make a difference 'where' it took place. It's the action in the immune system triggered by the infection that matters.
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Old 02-09-2016, 03:01 PM #32
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Here's an informative lecture that discusses EDS, POTS and MCAS:

https://www.youtube.com/watch?v=WXAdRiLMG8k
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Old 03-01-2016, 07:50 PM #33
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Though I posted this separately, I thought I'd post it in this thread too, given its relevance:

https://chriskresser.com/quercetin-heal-leaky-gut/
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Old 05-14-2016, 12:43 PM #34
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I wanted to update this. I saw a specialist who deals with MCAS too, and he ran a couple of blood tests, not the complex 24 hour urine tests, and offered me Cetirizine and Ranitidine to see whether it would improve my condition. I saw him a while ago but have been too busy to update. I still haven't filled the Rx, and don't think I will. I may see him again. He didn't see particularly pushy at all about taking the meds and said he'd be fine if I didn't, but I'm not sure what else he can do if I don't take the meds, since one of the 3 key methods of seeing whether one has MCAS is empiric, which required medication and observation. Testing for markers is imperfect and often fails, and in Canada many of the key markers are not tested as they are in the USA.

I have a followup appointment in May or June, can't recall, but I may push it back or call and see whether he wants to see me if I haven't taken the meds. I took Zantac for years, so Ranitidine, and I think that was a huge mistake. I don't intend on starting it again.
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Old 05-16-2016, 10:13 AM #35
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Originally Posted by SylvieM View Post
I would love a copy of the protocol...thank you!
Me too! Can I?
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Old 05-16-2016, 11:50 AM #36
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Quote:
Originally Posted by DavidHC View Post
I wanted to update this. I saw a specialist who deals with MCAS too, and he ran a couple of blood tests, not the complex 24 hour urine tests, and offered me Cetirizine and Ranitidine to see whether it would improve my condition. I saw him a while ago but have been too busy to update. I still haven't filled the Rx, and don't think I will. I may see him again. He didn't see particularly pushy at all about taking the meds and said he'd be fine if I didn't, but I'm not sure what else he can do if I don't take the meds, since one of the 3 key methods of seeing whether one has MCAS is empiric, which required medication and observation. Testing for markers is imperfect and often fails, and in Canada many of the key markers are not tested as they are in the USA.

I have a followup appointment in May or June, can't recall, but I may push it back or call and see whether he wants to see me if I haven't taken the meds. I took Zantac for years, so Ranitidine, and I think that was a huge mistake. I don't intend on starting it again.

The Cetirizine is just over the counter, Zyrtec...a second generation antihistamine. Is this the treatment protocol for MCAS?? I guess it would 'possibly' be beneficial to see the results of your labs...did he send them to you?
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Old 05-16-2016, 01:29 PM #37
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Right. They both are OCT. The treatment protocol is to use meds that suppress the mediators released, histamine being one of them. It can get more involved, complex and expensive, but this was a start, a basic empiric start. I'll see him soon, so perhaps I'll see. But the labs he ran were quite useless serum levels of one or two mediators. He doesn't seem to be taking it particularly seriously, though to be fair he doesn't have the resources of the testing done by the Mayo clinic. I'll have to see him to see the results. I guess I'm also not too keen on taking the meds, so I'm not taking this seriously either.


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The Cetirizine is just over the counter, Zyrtec...a second generation antihistamine. Is this the treatment protocol for MCAS?? I guess it would 'possibly' be beneficial to see the results of your labs...did he send them to you?
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Old 05-18-2016, 02:10 PM #38
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This is interesting. Note the case that begins on page 149:

https://www.google.ca/url?sa=t&rct=j...PsZzUA&cad=rja
Very interesting thread and links- thanks. My new neuro was useless and I have an appointment to see my new rheumatologist in a month's time. For myself I have been thinking about neuro Sjogren's, Ehler's Danlos Syndrome (EDS) and Mast Cell Disorders (Mastocytosis) and also wondering about possibly having Amalgam allergy that is causing burning mouth syndrome. I don't think Mast Cell Disorders or PoTS are commonly tested for in Scotland where I live. But I am hoping I'm wrong!

I was getting some relief from Piriton (not sure of possible alternative brand names in US?) but increasingly the relief is wearing off. I'm hesitant about researching PoTS too much until I know whether it is properly tested for or understood by the NHS in Scotland. I just feel I may end up getting more frustrated by doctors not knowing about stuff I've researched than if I let them do the detective work and tell me - if this makes sense?
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Old 05-19-2016, 12:00 PM #39
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I'm glad you found it helpful. If you suspect mastocytosis, it may be worth seeing a hematologist, as I hope to soon. My WBC has also been on a downward trend for a while now, so another reason to see one for me.

And it goes without saying that I feel your frustration. The saddest part of it all is perhaps not that they are ignorant where they shouldn't be, but that they are so resistant to learning new things and opening themselves up to well-evidenced alternatives.

Good luck!

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Very interesting thread and links- thanks. My new neuro was useless and I have an appointment to see my new rheumatologist in a month's time. For myself I have been thinking about neuro Sjogren's, Ehler's Danlos Syndrome (EDS) and Mast Cell Disorders (Mastocytosis) and also wondering about possibly having Amalgam allergy that is causing burning mouth syndrome. I don't think Mast Cell Disorders or PoTS are commonly tested for in Scotland where I live. But I am hoping I'm wrong!

I was getting some relief from Piriton (not sure of possible alternative brand names in US?) but increasingly the relief is wearing off. I'm hesitant about researching PoTS too much until I know whether it is properly tested for or understood by the NHS in Scotland. I just feel I may end up getting more frustrated by doctors not knowing about stuff I've researched than if I let them do the detective work and tell me - if this makes sense?
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Old 06-30-2016, 09:00 PM #40
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I know it has been a bit of time since last post on this thread but I wanted to let you know my daughter has been dx with MCAS. We have been searching for answers for her for the last 6-7 years and have seen all kinds of specialists which came up with nothing. One ER doctor did say she had POTS but that was it. We sought out a geneticists Dr. Maulik Shah who ordered a battery of blood and urine test. He recently dx MCAS and has begun treatment. The latest was a very low dosage of Doxepin. Although this is an anti depressant, it has a anti histamine effect at a lower dose. She only takes 20 mg a day. We have seen great reduction in pain and daily symptoms with this. She most recently started on the quercetin bromelain. To early to tell how it will work.

One thing I will say is that after years of searching MCAS was somethng that was never mentioned before we met Dr. Shah. Once he saw this through her testing, (high tryptase levels and histamine levels) it all made perfect sense. All her symptoms finally fit. I would encourage you to push forward with it. Not alot of doctors are familiar with it but there are some out there.
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