Dr Kriegel out Yale university has shown that preliminary results from his Laboratory suggest a role for gram positive commensal bacteria in the development of mouse APS (Hughes syndrome)
Disturbed gut microbiome can be from many causes one of which is repeated antibiotics. Do any of those on this forum have such a history and has anyone heard of or possibly attempted a fecal transplant?
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I am not diagnosed yet, I had a series of large strokes in November, was tested in the hospital in Florida, I was on vacation during when I had my first stroke, all three antibodies were negative then. When I got home to Connecticut, I saw doctors at the Yale stroke center who repeated the antibody tests and I was positive for the beta2 glycoprotein that time. I retest in March but have been set up to see Dr kreigel. I might be in his study on APS and the gut. I have not used antibiotics often but was on an antiviral for shingles when I had my stroke. I also have had reactions to penicillin and sulfa antibiotics. I am eating a high fiber/ resistant starch diet presently to try and lower my numbers.
Thanks for such a quick reply. My wife has Hughes syndrome she has battled since 1999 and done well on Wafarin but now has low platelets (thrombocytopenia). I would really appreciate you letting me know how your visit goes with Dr Kriegel. I will be really interested to know if he is considering Fecal transplant.
I am sorry about your wife's low platelets. Are you in the us? Dr Kreigel only takes referrals as patients but he has other doctors listed on his studies from other hospitals as well maybe one is near you. There is a lot of research being done on high fiber and high restistant starch diets to balance gut bacteria as well. Maybe take a look into that as well.
Here is a link to the Kreigel lab. On the left is the number for referring doctors to contact for appointments. They only take Doctor referrals. medicine.yale.edu/intmed/ra...
I'm in my mid '60's and have probably taken antibiotics half a dozen times if that in my life and none at all for the past 30 odd years.
I did go through many round of antibiotics in my late childhood for repeated strep infections, this was following multiple ear infections in childhood. Finally at the ripe old age of 12 I had a tonsillectomy. I followed that with a post op throat infection requiring more antibiotics. Fortunately, that ha been the end of my throat infections. In subsequent years, i’ve Amen antibiotics for sinus infections. I had blood poisoning following an out patient surgery to remove plantar warts from the bottom of my feet.
in regards to another post, during the strep infection years, I discovered my body abhors Septra (a sulfa drug). I don’t know if I am allergic per say or if it is just an intolerance. But I keep it as an allergy on my medical files. Interesting, I’ve wondered how I’ve come to have this autoimmune disorder. I’m three and a half years post stroke, in the last six months, my father has been diagnosed with rheumatoid arthritis, another autoimmune diease. I this related DNA ? I realize these aren’t the same autoimmune disease, but has there been any kind of “A-HA!” moment regarding WHY some autoimmune diseases develop in some of us? Are remarche any closer to discovery?
Hi, yes it is believed that autoimmune conditions are familial but just because we have a genetic predisposition does not mean that those genes will express. You need to have a trigger too and that is where gluten comes in. Specialists in the field say that although there can be other triggers (stress, infections, vitamin deficiencies esp Vit D) the only scientifically agreed on cause for AIs is gluten sensitivity. Ideally you try to identify and remove the trigger/s and minimise other risk factors. Functional medicine (holistic) practitioners describe the '3-legged stool' that leads to AI as:
(1)Genetic predisposition
(2)Environmental stressors
(3)'Leaky Gut'/ dysbiosis
Have a look at Tom O'Bryan on autoimmunity.
The way that they occur also means that if you get one, you are likely to get more. The ones that I know of in my own family history are pernicious anaemia, Parkinson's and thyroiditis as well as APS. Women with AIs outnumber men by about 12:1 (probably because there is an oestrogen involvement).
Incidentally, I had huge numbers of antibiotics for ear infections etc too and it now appears that a dairy intolerance was causing it. Might be worth a try if you are still having sinus/mucus issues. (And of course, ditch the gluten!)
From a young age to around 25 I was taking alot of amoxicillin for tonsillitis and antibiotics for acne but I can not remember the name.
YES. bad car accident at 12 Y.O. crushed upper jaw. Antibiotics from 12 to 24 years almost non-stop due to constant abccesses.
I took a huuuuuge amount of antibiodics -- mostly acromycin-- as a child. My Mom was among the first generation to recover from TB and, since TB kind'a ran in her family, she was determined to keep her chldren from contracting it. (Note: Mom "helped" Dad through pre-med and first year med. So she was sure she knew as much as Dad -- and she very well may have! So, she never had a problem getting RX scripts written and refilled.) I suppose her endless antibodic approach worked. I never got TB. But I did have a number of sore throats -- all of which were treated with antibiodics. The severity of these sore throats increased with age until by college time, I also would have fever. Very high fever. And one year I see-sawed back and forth: fine -- sore throat with fever -- fever goes UP not down on meds -- finally, off meds and fever subsides. Repeat. Repeat. All while trying to stay on top of studies in my highly competitive school. Finally, with a fever of over 104 I ended up in the ER (NOT student health) where I was diagnosed with "drug induced fever," and was told to never, EVER take penicillin again (which was the drug I had been taking on and off for the pervious 5 months.) The penicillin allergy diagnosis came in 1976, at the same time that my 7th case of "mono" within 14 years, was treated successfully with steroids. . Migraines began in 1986 (right after birth of 2nd child.) MIgraines morphed into mini strokes; APS diagnosis came in 2001.
I know. I have an unbelievable, complicated history. But yes, antibiodics probably had a lot to do with my APS trajectory. (And I didn't even discuss my Celiac -- not discovered until 2004!)
Yes huge amount of antibiotics both before and since lot and diagnosis.
They affect me a lot. Have so many I have them on repeat prescription.
Kaz
Hi, yes huge number of antibiotics from childhood onwards.
Regarding microbiome, have a look at the recent Interconnected series (Datis Kharrazian, Mark Hyman etc). Taking antibiotics was likened to taking the plug out of a bath full of water and letting it all drain away, then taking a probiotic would be like adding back in a single cup of water. They are essential and save lives, but need to be used only when essential, which certainly hasn't been the case with prescribing in my own experience.
I believe the section on faecal transplants was episode 8 with a representative from OpenBiome (stool bank).
Yes lots, Penicillin as a child for recurrent chest infections; "Diane" for acne – gave me joint pain; Septrin for UTIs – realised I was allergic after several rounds; later I developed an allergy to Penicillin. I now take Doxycycline and Cephalexin once or twice a year for chest infections.
Interesting that out of 9 responders, three have specifically mentioned (pre-diagnosis, if I read them correctly) reaction problems with (the appalling and banned in UK) sulfa antibiotics. Food for thought.
I certainly did in my past, but since sorting out so much with diet, exercise and also treating my Thyroid etc and taking probiotics, and in particular D Mannose to prevent urine and kidney infections, I am very much better and need them less which is great as I have a problem with serious allergy to them. MaryF
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Any relations of Hughes Syndrome with severe pms symptoms?
Have met a couple of consultants recently who have a gobsmackingly different opinion of Hughes syndrome!
Do confirmatory tests have to be positive for Hughes Syndrome?Hopefully in the future, all hospitals will have knowledge of Hughes Syndrome
A bit of good news re publicising Hughes Syndrome.
