Probotics

[GirlfromTennessee]

With APS can you take Probotics???? If so, what strength & type. I ordered the Immune Support & someone told me if I had an Immune Disease they were NOT safe? Anyone know the answer to this.... said they would cause a Flare. Advise Anyone??

[Wittycjt]

I take vitacost brand- online purchase- probiotics 2billion and haven't had issue. I do know they say whatever you decide to take it should not be pasteurised as it defeats the purpose. I also believe it is naturally found in foods like sauerkraut- fermented stuff not the canned type though it is probably pasteurized, it should be fresh. But be careful with sauerkraut if you are on warfarin it can bounce your INR around because i think it is high in vitamin k.... Ive had no problem but i cant speak for everyone and I am not on wafarin, im on Lovenox injections. Best of intentions, Cindy

[KellyInTexas Administrator]

Well, there is a bit of controversy over probiotics and histimine reactivity the world ofauto immune disease here in the USA. ( MCAS). You can get pro biotics that are not prone to trigger histime reactions. Most can. If anyone needs that information, let me know- I will dig for it.

Is this perhaps what our Girl from Tennessee is referring to?

[KellyInTexas Administrator]

Yes. I have lots of doubts about it. I’ll get back to you. It will be seen as a possible promotion, so I will send it privately.

[Roarah]

The latest research out of Yale says they might be harmful after all for APS or lupus. My stroke team at Yale has referred me as a patient to dr Kriegel and they advised against using over the counter probiotics. Possibly an over growth of a " good" bacteria, Lactobacillus reuteri (L. reuteri), that our bodies mistake as a threat is at the heart of Some autoimmune diseases. High fiber or resistant starch is ok though and better gut health can be achieved safely through diet rather than supplements often. researchgate.net/publicatio...

[KellyInTexas Administrator in reply to Roarah]

Yes. I’m planning on seeing Dr Kriegel. I have bowel dysautonomia and have had several GI surgeries. I’m much improved now that I’ve been diagnosed and my INR is set high . I used to go into ileus and organs would go into distress/ or fail.

Sweet potatoes are great- low histimine

Avoid all left overs as they age.

Nothing in a can *!this I’ve noticed to be true. ( migraine trigger

No pineapple (?) apparent this is a big trigger

Only salmon as far as fish

No chocolate/ no red wine

I think no night shades

No spinach. ( I tend to have it...)

Look up ,” low histimine diet.” The best one is out of Switzerland.

This is my limited understanding so far.

My particular MCAS I’m watching out for are migraines.

[Lauren2121 in reply to KellyInTexas]

This is a great histamine article: mthfr.net/histamine-intoler...

[Roarah]

The latest research out of Yale suggests using a high fiber/ restistant starch diet rather than probiotic supplements to support gut flora for lupus and APS. Lactobacillus r overgrowth may be a cause of lupus and Roseburia intestinalis in APS. Yale is working on gram positive antibiotics and vaccines against gut bacteria as possible far off cures for APS due to some new discoveries. The issue is to figure out how to keep a balance of not too little or too much. researchgate.net/publicatio...

[KellyInTexas Administrator in reply to Roarah]

That is correct. As certain foods age they can produce certain bacteria that can trigger mast cells to activat. Heparin production can become dis regulated and APS antibodies can be triggered. ( this is a very incomplete and poorly explained / understood sentence by me. )

Dr Lawrence Afrin briefly told me this about the heparin and APS antibodies and histimine. ( not the probiotics.)

[MaryF Administrator]

Hi, I have taken probiotics for decades now, without a problem, I do take very strong ones, and I do vary which ones I use. I also make sure I include organic unpasteurised cider vinegar in my daily diet to help, before my main meal, with digestion, as so many that started with Hashimotos have low stomach acid. Also daily, fermented foods, however I am not on Warfarin and do not have an INR to keep tabs on.

I do make my own sauerkraut which I snack on or as a side dish so that I balance the probiotics with prebiotics. I am lucky to have access to one of the best nutritionists in the country who has also widely studied this area of expertise, plus Thyroid health. I hope you find a probiotic that suits you, some start on weaker ones and then build up to the stronger ones, but do get your doctor to help you with this.

MaryF

[Roarah]

The issue is that as of December 2018 the results of a long term study at the Kreigel lab testing lupus and APS patients against controls found that specfic good probiotics are found in abundance in patients. A specific gene was also identified that might be responsible for over colonization found commonly in APS patients. These colonies of too many "good" probiotics may be mimicking disease and our autoimmune go in over drive producing antibodies. It has long been established that gram positive antibiotics work to destroy apl antibodies and prevent disease in mice by many labs. L reuteri is a gram positive probiotic that very well could be causing lupus and many other "good" bacteria are linked to APS these mentioned bacteria are often in over the counter probiotics.

As to triple positive APS, Yale has found at least three separate probiotic colonies linked to apls, maybe this is why.

You should only take the probiotics your specific gut lacks. Get a fecal test done if you feel you must take them and specifically only supplement what your body naturally lacks. To do otherwise might cause further progression of your disease.

I am very curious to see my next antibody numbers in March after following just a high fiber/ resistant starch diet. I am not on warfarin yet and use no probiotic supplements and I feel no symptoms of APS shy of my residual stroke deficits.

I believe dr Kriegel is leaps ahead in funding and studies than other labs at this stage. He may very well be the next Hughes for APS. By trying to decipher cause he also is trying to find better prevention, treatment and possibly cure plans for APS above warfarin and I, as one now knowing the vascular and heart damage warfarin frequently causes, hope not to be on warfarin for life.

[MrsMouseSJ]

Hi! I took probiotics for years - kefir, which I fermented myself using soya milk and a handy radiator. It really helped me. However I got out of the habit following bouts of surgery and my IBS- type symptoms have gone crazy accordingly. Now I am re-starting - this time trying Saccharomyces boulardii (a type of yeast), which has performed well in IBS research. I am not aware of there being an issue in respect of APS and INR - but as I'm due to have my INR checked this Tuesday we shall see!

[KellyInTexas Administrator]

That’s exactly right...this is exactly my stance. However, I do think there is something to it, but it’s being blown out of proportion by the main stream and charlatians tringbto turn a quick profit.

This is why I am skeptical.

The only two people so people so far that I would listen to are Dr Jill Schofield, and APS Specialist Rheumatoligist in Denver Colorado. ( she is one of my physicians.) She does specialize in MCAS and APS. She told me 50% of APS patients have MCAS, but it’s terribly difficult to prove on a test. ( sound familiar?)

The other is Dr Lawrence Afrin. He is a hematologist in NYC. He is ( I would say) perhaps the grandfather of the studies of MCAS. He wrote a book, Never Bet Against Occam. His book was on Dr Schofields desk when I was in her office for my consult, in fact.

I would say at this point the term ,”MCAS” is a more accurate medical way of naming what we have always referred to as simply “allergies “.

It’s just now being better and more widely understood.

What is old is new again. There is nothing new under the sun. Just a better understanding of it. ( most of us have heard that red wine can trigger migraines in some people for example. This would be a histimine reaction! )

I do have a very good academic paper I I will get on here very shortly.

I am thinking Dr Kriegel of Yale might shed light on this one way or another.

Roarah will see him before I will. She can ask about MCAS. ( probiotics is just a part of MCAS, as I understand it.)

[Roarah]

I want to be clear that I do not think probiotics are bad it is just that over the counter brands are not specifically matched to individual needs and they do not go through stringent safety testing or approval in the us. Supplements thus are really just a money making business not a health industry.

I want to partake in a study about APS and that is also why I was told not to take any OTC probiotics which can skew natural levels of my gut flora. But my neuro did say that a higher resistant starch diet could perhaps naturally improve my gut flora. I am allowed to eat yogurt or Kefir drinks though.

I think fecal testing is a place to start before trying generic mixed probiotic brands to make sure you are not over dosing with something many people already have too much of. Just like high levels of vitamin d are dangerous when one is not deficient high levels of probiotics may too cause someone more harm.

nccih.nih.gov/health/probio...

abc.net.au/news/health/2018...

[KellyInTexas Administrator]

This is one of the better academic papers I have found. ( this is the one I was digging for. Found it!)

academic.oup.com/ajcn/artic...

****Broken link replaced - Should now work*****

[Roarah in reply to KellyInTexas]

I can not open the link

[KellyInTexas Administrator in reply to Roarah]

I’m having trouble with it. I’m not sure what the problem is. I’ve sent it to Lynn in an original format to see if it’s my eyes giving me grief. ( I’ve throw small clots to my optic nerves so my vision can give a few problems.)

I’ll try it again tomorrow after I’ve rested my eyes and try it again.

[Roarah in reply to KellyInTexas]

Feel better, Kelly. Xo

[KellyInTexas Administrator in reply to KellyInTexas]

Thank you!