Author Topic: probiotics  (Read 3213 times)


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« on: April 05, 2014, 10:09:42 AM »
I've been reading all the posts about "gut issues".  Is it recommended that all people suffering from AI disease be on some type of probiotic?  or does this only apply for Chrohns disease sufferers?
Dx#1:  dx changed to Sicca Syndrome + UCTD (how wonderful)
Dx#2:  Osteoarthritis and high cholesterol
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Re: probiotics
« Reply #1 on: April 05, 2014, 10:26:23 AM »
Hi gold55,

I take a probiotic.  I've been taking it for several years now.  My doctors know I take it.  No one has said I shouldn't.

I don't 'know' if it's helping me, but I'm quite sure it isn't causing any problems.  It's a sort of 'just in case'.

I take lots of medications, NSAIDs, supplements and stuff.  I guess I just threw in the probiotic to balance out everything else!

Since I"m not very helpful, I Googled the terms probiotics and autoimmune conditions pubmed.  This brings up research:

Any role for probiotics in the therapy or prevention of autoimmune diseases? Up-to-date review.
Although there is a large amount of conflicting data on the preventive/therapeutic effects of probiotics in ADs, there is fairly promising evidence to recommend as well. Thus, probiotic use cannot be generally recommended for primary prevention and therapy of ADs for now.

Prophylactic effect of probiotics on the development of experimental autoimmune myasthenia gravis.
Our data suggest that IRT5 probiotics could be applicable to modulate antibody mediated autoimmune diseases including myasthenia gravis.

Intestinal Microflora: Probiotics and Autoimmunity1,2

These results suggest that some probiotic bacteria have the potential to augment or modify the host immune function through the regulation of host immune cells.

Any role for probiotics in the therapy or prevention of autoimmune diseases? Up-to-date review.
 Thus, probiotic use cannot be generally recommended for primary prevention and therapy of ADs for now.

You can see, gold55, that the research is all over the place.  But  no one seems to think the probiotics will hurt.  I take a standard brand (Phillips and sometimes others).  This is not a clear choice, and it's up to each of us to figure out what we will do.

Hugs,  Elaine
Female-Elaine,79-CVID-pSJS-WMD (Eylea) C-PN-CAD-Osteoarth-SFN-Knee/Shoulder Degeneration-SIBO-Act.Purpura-Tinitus-Meniere's-Hiatal Hernia-Achalasia-Hand Surgeries, UTI's-Braces/Walker-IVIG Gamx-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-D-Mannose-NAC-Om. 3-Naltrexone-Esomep.


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Re: probiotics
« Reply #2 on: April 05, 2014, 10:49:31 AM »
I also take a Probiotic. I don't know if Probiotics do anything for Autoimmune Disorders, but they have helped me. Although I have never had Chrones Disease or IBS, my intestines are much calmer and much more predictable since I started the Probiotics.  I am trying to do anything and everything that will help me as I journey along with Sjogren's. As you can see, I also take a lot of other supplements, some of which I know for sure are helping me, and some of which I don't know for sure if they are helping. I research my supplements pretty well and I am pretty sure that none of them are harming me. My Rheumatologist is aware of everything I take, as is my Neurologist. Neither had any objections.

I take FlorAssist from Life Extensions. FlorAssis provides a blend of six bacterial strains. Each FlorAssis capsule contains 15 Billion CFU (colony forming units) consisting of:

    Lactobacillus acidophilus LA-14
    Bifidobacterium lactis BL-04
    Lactobacillus paracasei LPC-37
    Lactobacillus rhamnosus LR-32
    Bifidobacterium bifidum/lactis BB-02
    Bifidobacterium longum BL-05
ANA 1:160; SS-A+; MSG +; Plaquenil, Rituxan infusions, Restasis, HRT, Curcumin, Calcium, CoQ10, NAC, Resveratrol, Whole Omega, Omega 3, R Lipoic Acid, Acetyl L Carnitine, Krill Oil, Mag. Threonate, Bio-Collagen UC II, NAD+, & Vit A, B, C, D, E, K 1 & 2.


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Re: probiotics
« Reply #3 on: April 05, 2014, 11:11:02 AM »
My doctor suggested Pancreatin (pancreatic enzyme) and it's changed my life. I used to be (or thought I was) lacto-intolerant and I would start the day with diarrhea and cramps. No longer. I order it from Amazon. It makes me wonder how Sjogren's has affected my pancreas.
73, Sjogrens, hypothyroid, multiple allergies, osteoarthritis,, cvid. Plaquinil, Synthroid, Zyrtec, Naproxen, Prozac, Cymbalta, Ambien, Vit D, B12, C, Fish Oil, Pancreatin; prn Tramadol.


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Re: probiotics
« Reply #4 on: April 05, 2014, 11:32:37 AM »
Granted, I am easily confused, but here's what: our trusted pediatrician who has Lupus, saw my husband with our kids a few years back and was asking him how I was doing, blah blah, blah. Husband told him that the probiotics I'd recently decided to try, seemed to be helping.  He about had a heart attack!

He went on to feverishly make my husband promise him that he wouldn't let me take another one. Went on to explain that the probiotics are boosting the immunity of our guts and what is AI, but an overactive immune system, so why would I boost it anywhere? I quit taking them.

Since then, I read of many here who take them, even swear by them.  Jasper, you're a nurse and a very educated, wise one at that. You are taking these, so what gives? I guess our ped is a quack? I really did think that they were helping and with the stomach problems I have.... well I need some help.

Thanks guys.

Always Asking Andrea

P.S. gold, is that your Gray???
Primary SjS, Steroid Induced Cushing's Syndrome, RA, Thyroiditis, Hyperparathyroidism, Raynaud's, Autonomic & Small Fiber NLeuropathy, Fibro. Osteoporosis, & other fun stuff associated w/ the afore mentioned. ~Meds: prednisone, Plaqu, Citracal D & Pain Meds, Compazine, phenergan, Iberogast.


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Re: probiotics
« Reply #5 on: April 05, 2014, 12:38:38 PM »
Andrea ... Well, I cannot prove anything. LOL.

However, I do a lot of internet research in order to try to find what may benefit me. I look for articles that are backed by recognized reliable sources such as NIH, scientific studies, medical journals, etc. Then I try to glean the information from them and decide if I think the products may help.

I also have to say that I don't put a lot of faith in the knowledge base of many regular doctors or in what many regular doctors say. After all, over the past 14  years, not one of my several doctors paid any attention to my many symptoms, brushing them off as being from aging and/or weighing too much. They failed to recognize that I had never been overweight until I started getting sick with odd things like Systemic Vasculitis. They never cared enough to even think there could be a connection between what caused the Systemic Vasculitis and the weight gain. They ignored my elevated liver enzymes for years and since 2000 would not even test me for them even though I had a history of elevated liver enzymes during the 1990s.  I finally insisted on being tested in 2009 but it took another 2 years and 2 more sets of elevated liver enzymes for them to order a Hepatitis panel in 2011, at which time it was discovered that I had Hep C.  When I asked for antidepressants for severe depression, one told me that the days would soon be longer and to wait for the sun to come out and see if that helped. I told several doctors about my suprapubic pain, urinary urgency, and urinary frequency and they either ignored it or one said I had vaginitis even though the doctor who diagnosed me with vaginitis never took a thorough history or did a pelvic exam or any testing whatsoever. (Now, after being diagnosed with Sjogren's, I know that I had interstitial cystitis which was causing the symptoms.)

I also told several of them about my dry eyes and dry mouth and dry skin and all of my joint problems, all of which were gnored by my regular doctors ar attributed to age or being too fat. (My eye doctor ordered the Restasis.) I finally got to a Rheumatologist by asking the ENT doctor to refer me to a Rheumatologist. I saw the ENT doctor because I developed a nasal septal perforation. Had I not requested a referral, I would still not be diagnosed with Sjogren's.

So you see, I don't really trust many doctors anymore. I think a lot of them are not well informed about much of anything and especially about supplements. Many of them are just following the standard guidelines and don't really do much problem solving, research, or critical thinking.

I also don't put a lot of faith in what many of them say about supplements. So I just do my own research looking for scientific data about the supplements of interest to me.

I also do a lot of reading about the treatments which are recommended by the medical profession, many of which I find useless or harmful. But, at the same time, many medical treatments are also very helpful.

Now, I don't turn away from all medical treatments. I endorse many of them. I just like to know what I am getting into and I like to have as much information as possible when deciding on which regular medical treatments and medications to take and/or follow.

I also don't advocate that anyone else do or take what I am doing or taking. I just let people know what I am doing and if I think it helped.

Here is a link to one article:

And a couple more:
ANA 1:160; SS-A+; MSG +; Plaquenil, Rituxan infusions, Restasis, HRT, Curcumin, Calcium, CoQ10, NAC, Resveratrol, Whole Omega, Omega 3, R Lipoic Acid, Acetyl L Carnitine, Krill Oil, Mag. Threonate, Bio-Collagen UC II, NAD+, & Vit A, B, C, D, E, K 1 & 2.

Sleepy In Seattle

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Re: probiotics
« Reply #6 on: April 05, 2014, 01:55:05 PM »
I feel like they help me quite a bit, for what it's worth. I tend to switch around among various reputable brands so that I get a variety of organisms, and not too many of any one kind.

If you Google "probiotics depression" or "probiotics anxiety" or "probiotics seratonin" you'll come across some interesting research that seems to indicate that much of the seratonin in our brains originates in our gut, and our gut flora play a key role in producing it - some studies have shown pretty cool results in reducing depression and anxiety through adjusting gut flora...with (arguably) fewer side effects than psychoactives.

****PLEASE UNDERSTAND, I would NEVER advise anybody on depression or anxiety meds to go off them and try's super-important to work with your doc about any mental health issues and medication regimes!!!!*****

However, if you do decide to take probiotics (for whatever reason), you might want to just be aware of your mood and see if you are also getting benefits in that department...just out of curiosity.

I think digestion and gut health is way more important than we have traditionally thought, and our typical modern diet and food system has removed us pretty far from how we're evolved to eat....I have come to believe that a lot of it is pretty damaging. Not saying by any means that it's at fault for EVERYTHING, or that eating some weird kind of diet is any kind of cure, but changing my diet and taking probiotics has definitely made me feel healthiER than I was. :)
Sjogren's, Lupus, Raynaud's, APS
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GF, "semi-Paleo" diet, Supplements, Plaquenil 400mg/day, Aspirin 325mg/day (for APS), Methotrexate 7mg/2x per week, Prednisone 3.5mg/day


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Re: probiotics
« Reply #7 on: April 05, 2014, 02:07:24 PM »
My gastroenterologist recommend probiotics to me, along with soluble fiber supplements to ensure that I get enough soluble fiber each day.

This is in addition to other treatments for IBS.  It's not specific to Sjogren's.
Primary Sjogrens, dx June 2009, Immunoglobulin deficiency, axial spondylosis arthritis, IBS, autonomic neuropathy
Omeprazone DR 40 mg, mobic 15 mg, Plaquenil, LDN, B1, B6, B12, D, fludrocortisone, gralise, various inhalers


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Re: probiotics
« Reply #8 on: April 05, 2014, 05:23:42 PM »
In my view, and research efforts, there are some indicators that we got to be so AI prone because of not having the flora of our grandparents and their naturally build immunity. So, I am pro-probiotics person. In part my problems perhaps accelerated because I have abandoned the diet I grew up with which included fresh yogurt every day. 



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Re: probiotics
« Reply #9 on: April 06, 2014, 12:12:42 AM »
I started taking probiotics a few months ago.  I recently broke out in a rash and stopped the probiotics.  No more rash.  So, does that mean the probiotics did stimulate my immune system to cause the rash? 

I'm not sure.  But my immune system is so darn wacky, I am going to forgo the probiotics for now.  I may try again later to see if it happens again.

Just one person's experience.


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Re: probiotics
« Reply #10 on: April 06, 2014, 04:32:58 AM »
When my ENT (yes) suggested I start probioti s I thought "this is gonna make a great story."   I continue to suffer  belly bouts...but infrequent.     I don't count Rx woes in those belly probs post probiotics.  I do NOT take the 30 million cfu potency.   A normal count.    I have eaten yogurt almost daily since a teen ager and difficult to find.  I juzt w9nder what I would have suffered without it.   As to how our parents ate...those fresh foods and non gmo meats didn't prolong their lives or those of their generation. Some things can't be as bad as you read...people are living longer....period.
Sjogren's, Psoriasis, Hashimoto's, Osteoporosis, Osteoarthritis, Cold hands/feet,  fatigue,  pilocarpine-25 mg , Restasis, Plaquenil, Low dose Prednisone (2-3 mg daily) Xylimelt, Citrucel, Alcon-Naturale, Tears,Omega 3, Vit.D, Caltrate+D3, Fosamax, CoQ10, Zinc, Oxtellar. Levothyroxene