Curious if anyone has had this test run?
There are a few people on this board who have been diagnosed with Sjogrens, running wild comes to mind, but I think there have been others. I too have worried about
it from time to time with my positive ANA and neuropathy (neuropathy is often a symptom of it). The symptoms, as with most AI diseases, can often be vague and overlap a lot with lyme+, making one wonder where one starts and the other begins.
I spend a lot of time in different autoimmune and infectious groups, looking for patterns. Recently, I came across a group called RoadBack.org after Girlie (thank you for that) posted about
it. The group uses antibiotic protocols, specifically minocylcine (or doxy) as the preferred drug, to treat connective tissue diseases. I've spent some time talking to people in the group, and much to my surprise, there are actually hundreds of patients in there who have been able to get some very serious connective tissue diseases into remission, and not many "buyer beware" stories. I dont think this has to do w/ censorship as the group is very
open and forthright. It really seems like it works. RA responds the best, but lupus, polymyositis, psoriatic arthritis, even scleroderma (previously thought of as untreatable), respond.
Unfortunately, it seems like the one least often to respond is Sjogrens. This was upsetting to me, as everything I've read up until that point lead me to believe this disease is just a beast that doesnt respond to treatment, and here was just more proof of that again. It usually doesnt respond to most/any immunosuppressants, and even HSCT chemotherapy, which is a complete immune system reset and works great for many other AI diseases, often does not stop it. The New Arthritis Breakthrough
, based on the work of Dr Thomas McPherson Brown, which RoadBack.org is based on, fingers specifically mycoplasma as the culprit in rheumatic disease, but also sometimes strep and sometimes lyme. This had me thinking, what if there's another antigen that causes Sjogrens instead, and thats why it doesnt respond the same way.
Then I came across a few users, 3 actually, who claimed to get their Sjogrens into remission by treating for Bartonella. This was interesting to me.
What's also interesting to me is that there is a form of sjogrens which seems to be mostly neurological...neuropsyche issues, POTS, blood pooling in the feet, and severe neuropathy, that often tests seronegative for the traditional sjogrens SSA/SSB markers, but often tests positive for the Sjogrens Early Antigen test. This is just anecdotal, a correlation that I've noticed people report in the n=1 stories.
My current rheumatologist says he doesnt use the test because they dont know enough about
it, and it's possible that it causes a whole another disease in itself. And it's true, from what i've seen anecdotally, the ones who test positive for this marker, but seronegative otherwise, tend to have the most aggressive neurological forms of the disease. A lot of the symptoms sometimes overlapping with bartonella...
After this, I noticed a post by a woman on FB claiming that her Dr, Dr Alex Shikman, has started using this test as a marker for Bartonella. According to her, he has noticed a correlation w/ Bartonella severity and the Early Sjogrens Antibody test, and uses it to determine how treatment is going.
I haven't spoken to him, so cant verify this or how he's using the test. He's in CA, or I would def see him. May try to make a telehealth, cost permitting.
But would be curious how some of those w/ suspected active neuro-Bartonella show on this test. Could be an interesting marker for differential diagnsis, if indeed there were a correlation. That's all I've got. Curious to hear thoughts.
Post Edited (dcd2103) : 12/4/2021 10:00:57 AM (GMT-7)