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Old 02-01-2016, 08:11 PM #31
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Thanks. I found this helpful site: http://www.thepatientceliac.com/2014...drome-madness/

I've read her blog before, very good.


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Originally Posted by SylvieM View Post
Hey David,
*administrative adit* if you Google "Mast Cell Acitivation Syndome" and "dysautonomia," lots of good sources pop up. The diagnostic is an endoscopy and biopsy...which I recently had for GERD. Lots of gut issues with this syndrome as well. Wiki is also a good starting point for sources.

It seems a lot of what you have been writing about yourself might be explained by this...hives, neuropathy, digestive issues....

S
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Old 02-01-2016, 08:47 PM #32
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Just finished reading this most thorough of articles on the subject: https://www.novapublishers.com/catal...ducts_id=42603. Very fascinating. Diagnostic criteria are not ideal at the moment and entirely agreed upon. The ones he recommends might be possible where I am, but we'll have to see. I'll bring it up with my physician. Another possibility is to use the anti-histamines and/or go on a low histamine diet to see if there is improvement. Mat, this might be something to look into. I'd consider contacting the author of the article, who is in MN. So much to consider!




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Thanks. I found this helpful site: http://www.thepatientceliac.com/2014...drome-madness/

I've read her blog before, very good.
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Old 02-01-2016, 10:22 PM #33
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En Bloc, I'm sorry you have to deal with such things. Thank you for sharing with me. I appreciate that. You've been very helpful to be on this forum. It sounds like you know how to deal with it after so many years. I've met people who have had chronic conditions for many years and they still don't know what to do. And I do get the waxing and waning with autonomic dysfunctions, I definitely do. Mine all come and go as well.

SIBO is not easy to deal with. I think I'm dealing with it right now (I have good reasons), though I can't be sure (it could be Candida or just disbiosis). I wanted to bring this to your attention: http://www.ncbi.nlm.nih.gov/pmc/arti.../#!po=0.375940. I believe it's not the only study. I intend to use a series of herbal antibiotics starting in February and lasting a few months, not the ones in the study. I'll also use probiotics.

Well, let me know what happens with your D levels and your plans. It seems like you've had your issues too. I'm finding part of what you've written confusing: so are you (or your doctor and pharmacist) saying that even if serum levels go up (as per the 25-Hydroxy test), it doesn't guarantee that the cells have absorbed them, so increases at the cellular level? Are they claiming that one needs D2, if one is to increase D at the cellular level? Perhaps Mrs.D can speak about this too. Doesn't the test noted test at the cellular level? This could be an issue then.

I can say for myself I've not had D2 supplements, but have had D3, and that immediately upon taking even low doses, at 1000 IU, I feel improved mood, energy, less neuropathic pain in particular respects, and the like. It's immediate with me. I can say that getting more sun in the summer helped too, this in hindsight - I would just walk a lot and it was sunny, and I improved during this time. What I can't speak to yet is whether my serum levels are up. I have the test written for me, but will hold off for a month, maybe later February, since I've been on and off and finally seem to have something working for me, which I should at least take for a month before testing. But in terms of how I feel after taking the supplement, well it's glaringly obvious that it has a huge impact on me in all sorts of ways. At night, for example, I used to just lose all energy, couldn't stand on my legs, which were wobbly, had immense bone and muscle pain, and need to fall on my mattress; this is all gone now, completely, and it happened immediately upon taking the D3, the first day I did. I'm not sure what to make of all this.

Thanks for the article on SIBO. I noticed that several of the contributors to the article are GI's from Hopkins (which is where my GI is located). I plan to contact him and ask whether he knows of this study or the other physicians that contributed. There is a contraindication with the ingredients of the herbal supplement that may not allow me to use it (cannot be taken if on blood thinners or using reflux meds), but again, I will ask about this before dismissing the possibility. It appears it has about the same effectiveness as the Rifaximin and I've never had any problems taking the Rifaximin (other than the cost---but I can get overseas for less).

I'll post my Vitamin D levels when I get them. I hope I have some improvement.

Thanks again!
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Old 02-01-2016, 10:49 PM #34
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Interesting. Do let me know what they say. There are other studies, at least one more, showing the same thing, I believe. Also, check this out: http://www.siboinfo.com/herbal-antibiotics.html. You needn't use those formulations. I am not. I will use various herbs in single supplement form, so I can know which are working and which are not: garlic, neem, cinnamon, goldenseal, oregano and various others.

I hope you do too. I'll do the same with mine. I could do it now, but I don't think they're up yet, too soon. I wish both of us good luck.


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Originally Posted by en bloc View Post
Thanks for the article on SIBO. I noticed that several of the contributors to the article are GI's from Hopkins (which is where my GI is located). I plan to contact him and ask whether he knows of this study or the other physicians that contributed. There is a contraindication with the ingredients of the herbal supplement that may not allow me to use it (cannot be taken if on blood thinners or using reflux meds), but again, I will ask about this before dismissing the possibility. It appears it has about the same effectiveness as the Rifaximin and I've never had any problems taking the Rifaximin (other than the cost---but I can get overseas for less).

I'll post my Vitamin D levels when I get them. I hope I have some improvement.

Thanks again!
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Old 02-02-2016, 12:55 PM #35
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Quote:
Originally Posted by DavidHC View Post
Interesting. Do let me know what they say. There are other studies, at least one more, showing the same thing, I believe. Also, check this out: http://www.siboinfo.com/herbal-antibiotics.html. You needn't use those formulations. I am not. I will use various herbs in single supplement form, so I can know which are working and which are not: garlic, neem, cinnamon, goldenseal, oregano and various others.

I hope you do too. I'll do the same with mine. I could do it now, but I don't think they're up yet, too soon. I wish both of us good luck.
Hi - I can't really comment on a lot of the conversation and research on this thread because it's become very US specific or else too scientific for me i.e beyond my ken as we'd say here in Scotland

However I did want to say that I've been taking AdCal D3 for about two years now. I can't say 100% that this is more than coincidence - although my instincts say that it is. But when I started being prescribed this I had already learned for myself that I was D deficient by getting myself privately tested because my NHS GP refused to run this test - saying that everyone on this group of islands in the north east of Scotland would be low for vitamin D. The fact that it also has the highest incidence of MS per head of population in the world didn't seem to concern him in relation to my symptoms and history of autoimmunity. Also I'd been taking Methotrexate by injection for 2 years and all the warnings were to avoid direct sunlight if taking this medication.

So at the end of a long, hot summer - with plenty of time outside not wearing sun hats or keeping too well covered I got myself privately tested and my level was 28 - the very bottom of insufficient. I went to my GP and showed him this result and he agreed that it was a bit low, as were my calcium levels. By this time I was taking Prednisolone for an RA flare up so calcium was extra important.

Within two or three weeks of taking a chewable tablet everyday I found that the severe depression I was suffering from had lifted and has never returned despite some serious provocation! Also I have never suffered from RA synovial joint pain or swelling since taking this supplement. I've had my D levels and calcium levels checked and all are now within normal range.

Today I had my B12, Ferritin and Folate levels checked at my request. The GP said that if I've had B12 checked before and it has been fine it's unlikely to have changed. I think this is incorrect actually because I have friends who have Pernicious Anaemia who's serum B12 markers have radically changed prior to having injections. But if the lab refuse to run the test then I'll have to go private again. I'm determined to get to the root of my small fibre neuropathy. I did take sublingual methyl B12 Lozenges for six months but it made no difference at all to my SFN symptoms so I stopped. I also had myself privately tested for Coeliacs antibodies and found that I was only mildly wheat intolerant. I have been avoiding wheat and gluten for five years now but when I deviate occasionally it makes no difference to how well or ill I feel.

Hope this might be useful.
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Last edited by MAT52; 02-02-2016 at 01:24 PM.
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Old 02-02-2016, 02:51 PM #36
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Very helpful.

It will be quite interesting to see what your B12, Ferritin and Folate levels reveal.

Obviously, your Vit D responded well to your supplementing. I'm hoping mine will do the same.
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Old 02-02-2016, 06:34 PM #37
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Mat, fair enough. But I will say that I'm finding this whole issue of mast cells and Mast Cell Activation Syndrome very fascinating pertinent. I've read everything I can find since last night, a few hundred pages, and there have been cases with patients who have neuropathy arising from MCAS. Given how many of my symptoms, including my histamine issues, fall under this systematic or multi-tissue systemic disorder, I will look into this likely through a hematologist.

On another note, it's great that vitamin D has been so helpful to you. Just great! I'm not surprised though, since, among other things, my mood has dramatically improved. I am suffering from a bit of insomnia still, but I'm not yet sure it's the D. B12 has also been immensely helpful to me, as has my B complex, so perhaps they will help you also. These are such essential vitamins, all of them. And D is just something else and so central to so many functions, especially those that concern the immune system. I had normal B12, though on the lower end, but am still taking 1500 mcg each morning, and it has helped with energy and likely other things.



Quote:
Originally Posted by MAT52 View Post
Hi - I can't really comment on a lot of the conversation and research on this thread because it's become very US specific or else too scientific for me i.e beyond my ken as we'd say here in Scotland

However I did want to say that I've been taking AdCal D3 for about two years now. I can't say 100% that this is more than coincidence - although my instincts say that it is. But when I started being prescribed this I had already learned for myself that I was D deficient by getting myself privately tested because my NHS GP refused to run this test - saying that everyone on this group of islands in the north east of Scotland would be low for vitamin D. The fact that it also has the highest incidence of MS per head of population in the world didn't seem to concern him in relation to my symptoms and history of autoimmunity. Also I'd been taking Methotrexate by injection for 2 years and all the warnings were to avoid direct sunlight if taking this medication.

So at the end of a long, hot summer - with plenty of time outside not wearing sun hats or keeping too well covered I got myself privately tested and my level was 28 - the very bottom of insufficient. I went to my GP and showed him this result and he agreed that it was a bit low, as were my calcium levels. By this time I was taking Prednisolone for an RA flare up so calcium was extra important.

Within two or three weeks of taking a chewable tablet everyday I found that the severe depression I was suffering from had lifted and has never returned despite some serious provocation! Also I have never suffered from RA synovial joint pain or swelling since taking this supplement. I've had my D levels and calcium levels checked and all are now within normal range.

Today I had my B12, Ferritin and Folate levels checked at my request. The GP said that if I've had B12 checked before and it has been fine it's unlikely to have changed. I think this is incorrect actually because I have friends who have Pernicious Anaemia who's serum B12 markers have radically changed prior to having injections. But if the lab refuse to run the test then I'll have to go private again. I'm determined to get to the root of my small fibre neuropathy. I did take sublingual methyl B12 Lozenges for six months but it made no difference at all to my SFN symptoms so I stopped. I also had myself privately tested for Coeliacs antibodies and found that I was only mildly wheat intolerant. I have been avoiding wheat and gluten for five years now but when I deviate occasionally it makes no difference to how well or ill I feel.

Hope this might be useful.
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