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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. Quote:
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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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02-01-2016, 10:22 PM | #33 | |||
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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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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. Quote:
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02-02-2016, 12:55 PM | #35 | ||
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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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If you get lemons, make lemonade Sjögren’s, Hashimoto’s and Systemic Sclerosis with Raynaud’s, Erythromelagia and small fibre polyneuropathy, GI problems top to tail, degenerative disc disease and possible additional autoimmune diseases Last edited by MAT52; 02-02-2016 at 01:24 PM. |
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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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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:
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