Sticky Blood-Hughes Syndrome Support

The Science of APS

I have seen quite a bit of discussion of personal experiences with and management of APS/Hughs; but I have not seen much on the science of it, which I believe is important for us to understand, at least at some basic level. Therefore, I am posting what folllows regarding the possible infectious origin of APS.

What is important to understand is that the immune system has a pro-inflammatory side and an anti-inflammatory side. Ideally, there is a balance. But very frequently we see so much modern disease benig traced back to inflammation, and all autoimmunity is linked to inflammation. In fact, an immnue response is, by definition, inflammatory in nature, where cytokines and other agents rise to meet a real or perceived threat.

The following article discusses the science of APS etiology:

The most pertinent part of the article, I belive, comes at the end where the author discuss the nature of an APS thrombophilic incident. Essentially, the author points to a 2-step immune response, with some infectious agent FIRST being responsible, through molecular mimicry, for the development of the APS anti-bodies.

But, AND THIS IS IMPORTANT, the author traces actual thrombotic events (DVT, pulmonary embolism, etc.) to a SECOND factor, that TRIGGERS the clotting event. One such infectious factor is Lipopolysaccharide (LPS).

A description of LPS can be found here:

LPS is basically found as a protective substance in the membranes of gram negative bacteria (e.g. E.coli, salmonella, H.pilori, etc.). LPS is an endotoxin that can cause severe immune responses. Endotxins are discussed more here:

The final 2 sentences in the article are most pertinent to those of us suffering APS:

"The presence of endotoxins in the blood is called endotoxemia. It can lead to septic shock, if the immune response is severely pronounced.[5]

Moreover, endotoxemia of intestinal origin is considered to be an important factor in the development of alcoholic hepatitis,[6] which is likely to develop on the basis of the small bowel bacterial overgrowth syndrome and an increased intestinal permeability."

Now I know that most of us are not alcoholics. But in people with autoimmunity, there is often an issue with intestinal permeability (leaky gut), small bowel bacterial overgrowth and H.pilori. H.Pilori can be handled with antibioctics, and bowel dysbiosis and dysfunction can be addressed through diet.

Not all of this may apply directly to all of us, but I think it is worth researching more into using those lifestyle options within our control to help prevent any event that might lead to an APS flare.

Just as a disclaimer, I am not a scientist, nor am I doctor, but the article I have cited is something you may want to present to your doctor for proper interpretation.

Good luck to all.

6 Replies

Thank you very much for posting this. As someone who has been suffering with in diagnosed stomach pains for the past four months I find this very interesting. I am waiting the results of biopsies and tests for Celiac and H pilori amongst others but know that the test proceedure has brought about one of the worst flares I have had since my Stroke!


Thanks for posting, interesting read that I will also share on my other blog. I thought there had to some sort of connection.

I will re-read and then read some of the referenced works as well. I was very intrigued with the infection/illness connection to activation as I have discussed this with many patients and docs as there really seemed to be a trigger for me.

Well this also answers what caused my last bad flare as I am prone to UTI and it list as a majority of cases are activated by them! The last one I had I was travelling and didn't have the antibiotics I needed, then my sister's fiancee died and I had to fly there so treatment was delayed several days until I could get to a small clinic (ohh the pain I had!).

Interestingly I now carry the abx with me all the time as I get them so frequently so maybe this is also helping keep the APS in check? It sort of cinfirms that I need to be very proactive and watchful for any symptoms of impending infectious process!

I have intermittent stomach pain and other issues which can be really severe at times. Had more than one workup and latest consensus was ulcerative colitis although I doubt that dx, and think its more a perfusion/blood flow and autoimmune issue.


Hi TheKid

Thanks for posting hon, we all need all the information we can get, more than anything to educate the medical profession about this condition. So that when we need emergency treatment our doctors know what they're dealing with. As Hazel on other forum says 'Knowledge is power'.

The sharing of personal experiences I believe is important too, so that we know we are not alone. Which is how I felt in the dark days of trying to get diagnosis.

Take care gentle hugs love Sheena xxxxxxxxx


Thanks, TheKid,

My recent hip pain/ gait problem (which I'm guessing can be remedied by adding a higher therapeutic INR to my physical therapy? -- more on this later) began (coincidentally?) at the same time my IBS flared up. The IBS I have regarded as an inconvenience and perhaps did not call enough medical attention to it. I live in West Virginia and my town's drinking water is drawn from a river which includes several coal slurry impoundments upstream.

While trying to get a handle on what is going on with this hip I briefly consulted a chiropractor who wanted me to go on a dairy avoidance diet. I resist new restrictions on diet because I already am a Celiac and (of course) on warfarin and must keep track of all the Vitamin K agonists and antagonists. "Besides," as I continued to rationalize to myself, "when I was on my hiking trip in Scotland I ate tons -- TONS of dairy and my IBS went away, so it can't be dairy. WAIT A MINUTE!," I continued to reason with myself, "the IBS also went away when I was in Alaska . . . and on that trip to Florida . . . and that week-end trip to Tennessee. ITS MUST BE THE WATER!" I stopped drinking my local municipal water that day and the IBS stopped. As in 'Stopped.' As in ' pushed the off switch.'

I still deal with the hip/gait problems, and I am convinced there are multiple issues going on: Hughes (in the process of being solved as I advocate for a higher INR #) , IBS, (solved now that I've identified the trigger) and gait training (this one's the hard part as I have to re-learn how to walk.) Which of these 3 is the "chicken," and which are the "eggs?" I have no idea.

What is in the local water? Again, I have no idea. The town water, and my household pipes, pass "biologics" inspection as well as Cu and Pb standards. But US EPA only suggests standards for a lot of stuff which will make you sick in the short term -- there is inconsistent understanding of long-term effects of a lot of mine waste which ends up in water faucets. Is it a heavy metal? or a virus which escapes detection? Again. I have no idea. But I'm avoiding drinking the local water, though I still shower in it.

Thanks for the article links. They reenforce my suspicion that the IBS is more of the chicken and the hip pain and gait issues are more egg-like.



I think a big problem is that people who have intestinal pains are put under the umbrella of 'ibs', once basic test have been carried out to rule out anything more sinister. In my very first pregnancy I had severe stomach pain/vomiting diarrohea for weeks and weeks. I went to the doctors numerous times, and at one consultation said 'i cant see this pregnancy continuing, i cant bring myself even to buy anything for the baby' - i just knew i wasnt right and the pregnancy wasnt going to continue - after calling me an anxious mother and sending me away I went in to prem labour a 19 weeks and lost a little boy. All tests on the stool samples came back negative of anything,and therefore was put undr this umbrella of IBS - I think there is a lot more connecting all of this, my diet had not changed and it wasnt poisoning of any sort, and pregnancy and illness very much remains a trigger for these auto immune diseases, which i believe a lot of the times why were continually sent away saying were just stressed/depressed!


Yes, thank you very much for posting this Kid. I found out just a few months ago, that I had h.pylori, and had my PE about 16 months prior to that - but doesn't mean I couldn't have had the ulcer then too. Just took it time to saw through my artery.

Then I would say about 8 years ago I started getting flat purpura on my fingers and had been researching that for years - just out of the blue. I think it's all related.


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