Exactly. I offered it as a parallel to your story. En Bloc, there's little doubt in my mind. For a few months now my goal has been to treat the underlying cause of it. From the beginning I thought it was some infection, virus, what have you via the GI, given my GI issues and how they had gotten worse. I have serious dysbiosis from years of drinking and eating poorly, as well as from antiobiotics. It has gotten worse. I will treat my gut and see what happens. So far mu hunch has proven to be quite promising: by treating my gut via supplements, diet, and other relevant things, my symptoms have improved immensely. Moreover, there's a reason why taking vitamin D, the all important immune vitamin, has been so groundbreaking for me. It's amazing what it has done. So in short I completely agree with you. Now to see where this goes, whether I can achieve remission, or what have you. I hate to say it, but I find autoimmunity a fascinating issue, even though it's making me suffer on a personal level...

En Bloc, how are you with vitamin D?

I was just about to ask you the same...what your level is.

I have severe gastroparesis from autonomic dysfunction, so it makes for very difficult absorption of nutrients. Therefore, my Vitamin D has been low for quite some time, regardless of many attempts at supplementing with both D3 and Rx D2 (50,000 iu twice a week for 12 weeks). I have same issue with iron, but get that via IV every now & then to keep levels up. My vitamin D is being retested on Feb 17 and I will get results at f/u visit on Feb 25. My last test (4 months ago) it was still only 26 (again after 12 weeks of 50,000 weekly Rx D2)...and that was an slight improvement from the previous level of 22.

What is your level?

You know, I may have some gastroparesis, but I can't be sure. Regardless, I hope it doesn't come back or get worse, if I do have it. Has yours improved at all, or has it gotten worse? I'm sorry to hear you have such a severe case. Is that typical with Sjogren's, or can one never tell? How do you treat it?

Anyway, don't mind all the questions. I'm just curious and sad to hear that you have such problem. It sounds like a particularly difficult issue to deal with.

So, have you seen this thread that I started. It documents my struggle and all. I've had serious issue with D and finding one that can work. I will update it today, later on, but I'm doing better, though too soon to tell for sure. Here it is: http://neurotalk.psychcentral.com/thread229410.html. As you can see from the first post, I was in the low 20s, 23 I believe. I will get tested again very soon. How long have you known that you were deficient? Does it go back years? I found out quite early on, in November.

Do you know about the D3 creams? The wonderfully informed Mrs.D is the one who told me about them. I've been using one for 5 days now (this cheap one: http://www.amazon.com/gp/product/B00...=ATVPDKIKX0DER) and it bypasses by GI, so I don't have those issues now, and it's working. I can tell. Soon I'll know about serum levels. En Bloc, it has truly worked miracles for me. I hope you can try it and that it can help you. Pick a fatty part of your body and try a dab, then more, if you like. Dosage is obviously not as precise, but it doesn't matter and hasn't created problems for me.

My gastroparesis waxes and wanes, just as most of the other autonomic dysfunctions. I have periods with good control and then periods of it being so bad that I end up with SIBO (small intestine bacterial overgrowth)...which if when absorption (and symptoms) are at their worst.

The only real effective treatment for me is Domperidone (not available in the US, but I get it from overseas) and lifestyle changes. These consist of eating small meals, nothing after 5 pm to avoid nighttime symptoms, walking after I eat, avoiding raw veggies, fruits and nuts...but steamed/cooked veggies are fine and fruit juices in moderation. When things are bad I grind up my food for easier digestion. If I get to the point of SIBO, then I have to take Rifaximin...an antibiotic just for GI bacteria infections. It is not absorbed into the blood stream so I don't have problems with allergic reactions like other antibiotics. It works well but my insurance doesn't cover it anymore so VERY expensive.

I have not tried Vit D cream, but may do so. I'd be interested in seeing whether your level actually increased from it. I have read many things about vitamin D, including what MrsD has said about differences between D2 & D3. I have tried both. My doctor says that although D3 will raise levels faster, it does not do so at the cellular level. Pharmacist says the same. I have the read articles MrsD has posted and they make sense also. It's hard for someone to make sense of this when there is conflicting reports. I will see what my levels come back after taking this latest round of D2 at my doctors begging (after me arguing with him about MrsD's reports on D3 being better). The proof is in the pudding, so they say. I had no improvement on D3 and will now see what happens on extensive D2. I have labs drawn on Feb 17th and results should be back the 25th. My doctor is fully aware of how important vitamin D is the overall picture with autoimmune disease, so I will do just about anything to get my level up. If my level hasn't come up with these labs, then I will certainly get the cream and try that. One thing at a time, so I know what is working and what isn't.

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.

looks like your dermatitis,eczema couldve been hormone related. ive been plagued with rhinitis, and many years ago, it caused frequent nosebleeds due to allergies(which i discovered) after i had a blood vessel cauterized. All my nasal allergies stopped or died down a bit when i started antihistamines, it seems ceterizine and diphenhydramine worked the best. currently my contact dermatitis which has been around for 1.5 years now, has been plaguing me starting from summer to next spring. Last year my dermatitis mysteriously died down to the point where i stopped using antihistimine and topical triamcinilone ointment use. then it started ravaging my skin near the end of july(hot weather). dermatitis). im suprised you found such relief in such an unusual drug,which is meant for allergies.

Dear David (and others),

I don't know much about this, but some people *administrative edit* also have Mast Cell Activation Syndrome. Your new allergies and SFN may be both traced to this.

I should look into it as well, for my dysautonomia began with a host of neurological symptom s and anaphylaxis....I never put it together!

Antihistamines help this......

I hope this a more optimistic research path to follow than amyloidosis!

Sylvie

Thanks, Sylvie. I'll look into it, though an initial read seemed to indicate that it's not easily diagnosed and there are not even WHO guidelines for diagnosis. I don't have a number of the issues/symptoms listed, but that doesn't mean much, I know. Anyway, thanks again, I'll look into. If anyone knows more, please do share.

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