Thanks, Rainy, Very thoughtful. After reading through the article, I still think the positive lip biopsy for Sjogrens makes it hard to doubt. I don't say that as completely knowing, but am thinking the positive biopsy leaves secondary Sjogrens doubtful? The biopsy is hard to get around.

Thanks, Garzie. I have no doubt Rainy was positing to show not only that Lyme can cause Sjogrens but also other autoimmune problems.

He is also a guy who works to help others, and trying to ease my mind some and give a pathway to getting better is also in his nature. My post was not to negate his points, but more of a question I have not been able to find an answer to in more than two years regarding the positive lip biopsy.

The post he made is very typical of the kind of people that are on this website. Helping each other to find answers and solutions is why this site is invaluable for those dealing with Lyme and co-infections. And so many people, you included, show not only good analytical thoughts and information, but heart.

Hi guys 🙂,

running wild, thank you very much for the kind words. They mean a whole lot to me. It's actually really easy to be kind to friends like you (as you're full of kindness yourself).

Garzie, you really explained my point well 🙂. The way I see it, is that if this can be resolved with antibiotics, then it doesn't really matter what the lip biopsy said.

I remember running wild, that you said you got to ~85% better (or more) in the past with Bicillin, so I would personally try to focus on that!

This person in the study tested positive for almost every Sjogren's test under the sun and yet, it was all driven by Lyme. You're right though, she didn't do the lip biopsy but I don't see why the same could happen to that test.

From sjogrens.org:

"The biopsy looks for signs of inflammation and cells that respond to inflammation that build up within the exocrine glands (salivary and lacrimal)."

This doesn't sound like it rules out Lyme as the driver behind the sjogren's.

Keep in mind also, for example the following.. I have secondary hypothyroidism (it's driven by a benign tumor on my pituitary gland). Yet, if I test my thyroid levels (without medication) they will simply show up as completely tanked and indicate that I have hypothyroidism and that my thyroid isn't functioning.

The cause however, being very different for me than most people. In your case, I believe the cause is most likely Lyme.

God bless you.

i still think there is some sort of wires crossed thing here guys

RW i think what Rainy is saying - is that the Sjogren's is not "lyme mimicking Sjogren's" - its actually real Sjogren's - as it was for the lady in the report - but that the Sjogren's is caused by Lyme and can resolve again if Lyme is successfully treated.

i tend to agree - as this has been known to happen with other real auto-immune diseases with lyme
i have read about hashimoto's demonstrated by thyroid antibody counts completely reversing after completion of lyme treatment in adolescents.
i have seen other examples too.

mechanisms could be along the lines of :
intracellular infection breaks open human tissues and exposes insides of cells to immune system while at the same time driving immune dysregulation via chronic inflammation
this double whammy results in antibody to self proteins forming - and these persist due to ongoing dysregulation of immune system by infections ( immune system not able to reset )

treating infections could eventually remove the inflammation and allow the immune system to resent
self antibody levels drop - self directed immune attack on tissues subsides - and symptoms follow.

so auto-immunity is just another symptom of Lyme and co - and while auto-immunity can be self perpetuating - normal medicine does not understand the causes - or what to do about them -
so people in the general population rarely address the cause of auto-immunity.
whereas if we know the cause - ie infection - and that cause is removed - we have at least a fair chance that the symptom will resolve

this is my interpretation of the report and what we know about these diseases in general at any rate.

hope its of some help

good Luck RW

i actually think every one with lyme has at least a bit of auto-immunity going on - all the aches and pains and gut issues and brain issues etc - like if they actually had a test that could measure antibodies to all say 5000 different proteins in the human body - they would find a number of protiens with abnormal numbers of reactive antibodies to them present in each person - we just don't have specific names for all of those yet.

they seem to settle down again when people get well

bit like vitamins - we only call them a vitamin if people get a specific disease if they lack that nutrient - but there are hundreds of nutrients we need - or have at least evolved alongside and benefit from - but we don't have specific names for the lack of them.

Thanks again, to both you and Rainy. Have one final question that I think I know the answer to: Is Lyme considered a systemic disease?

I tested positive for Sjogrens after finding out I had Lyme. MY LLMD believes it's secondary. Also driven by Lyme. LYME AND tb illness may also highlight something that you would never know you had because Lyme attacks your immunity. Hope I made sense🩷🙏🏼

Yes! via the ssa testing and the schrimers test.

I met with a new naturopath who is the most sincere and in-depth one I’ve had in all the years of dealing with this.

Also met with her nutritionist, who spent an hour asking questions and is now creating an in-depth eating plan. Then I will meet when the naturopath again for a plan to deal with all that is going on. Unlike others, she doesn’t seem like she is all about money.

The large fiber neuropathy is one area I’m trying to figure out. What is causing what? That’s the million dollar question. Feel very stiff, dizzy and tired. Hoping all this can be tied together and AJ answer is out there.