Early Sjogrens antibody as a marker for bart

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)

Your timing is impeccable, dcd. Recently started treating Bartonella with Oil of Oregano and houttuynia. This week added lower dose of Doxy and will work up. I didn’t know of the Bart/Sjogrens link.

Woulda doctor cut to the chase and have you do a lip biopsy, as I did? All autoimmune markers have remained negative. Doctor wouldn’t do an early antigen but opted for lip biopsy.

Following your an other’s advice, I am going after infections in hopes of calming Sjogrens. Since treating Bart, I’ve noticed an uptick in tingling in my hands and pain around toes.

Since I had positive Bart and TBRF tests, it makes sense to go after those. I can’t remember if you show positive on Bart or others. But is a lip biopsy a possibility for you. It was thee we very I “verified” Sjogrens. Thanks

Here's some data of a 66 year old man with Bartonella.
Not sure if it helps in any way.

It says:

"Antinuclear antibody by immunofluorescent antibody testing was negative, anti-Sjögren’s syndrome A (anti-SSA) antibodies were positive at a level of >8.0 antibody index units, with no clinical evidence of Sjogren’s syndrome."

https://www.microbiologyresearch.org/content/journal/jmm/10.1099/jmm.0.052134-0

Thanks Garzie, I wish I could remember these names, sounds very familiar.

Yep. I have had positive RF
a low level of dsDNA antibodies also.

As i understand it these and the ANA antibodies are basically indications that your body is seeing and making antibodies to stuff that should be inside your cells and therefore not normally exposed to the immune system.

However. Intracellular infection cause cell damage and activate the immune system breaking open the cells and exposing their contents.

Hence the antibodies.

Well I said treating w abx w activity against lyme/mycoplasma doesn’t necessarily fix it, but treating for bart may

Yea. It does seem like my supplement theory on the enthesitis is holding. Now that I’ve stopped all supplements it’s basically gone, knock on wood. Although I need to go for a few more weeks with no supplements and no flare to be sure. But it appears something in some of them triggers me, but even with the copious notes I take I can’t be exactly sure what. I’d really to do some experiments to see which I can handle and which I can’t, but the pain that comes with a flare just isn’t worth it. It lasts for about 2 weeks every time and is excruciating, I can’t subject myself to that again and again. So for now I’m not taking anything.

I do plan on getting a lip biopsy in a couple of weeks so we’ll see what that says.

I started SCIG back up a couple weeks ago so will be waiting for that to start to help, hopefully, will be a while.

In the meantime I’d like to figure out of there is an infection I can pinpoint. Sending out for IgeneX next week, and will ask my GP to test for ureaplasma and mycoplasma by urine culture as well as antibody, maybe that’s behind the urinary tract issues I’ve had, and could explain the arthritis, if Dr Browns theory is true. I will ask Dr K if he can send out to T-Lab or Galaxy, but I won’t talk to him for a few months. And my microscope arrived so next weekend will get going with that and see if there’s anything i can see visually myself, should be fun.

Finally, once that’s all said and done, depending on if the tests reveal anything specific to go after, if not I think at some point in January or February I will try treating with either the Minocycline or clarithromycin + plaquenil I have here. See if I can go low and slow and get on an anti-arithmetic protocol to at least help that, although worried about it flaring my neuropathy and the fillers in the pills flaring my enthesitis

Post Edited (dcd2103) : 12/5/2021 5:53:23 PM (GMT-7)