Author Topic: Sjögren's syndrome  (Read 8761 times)

Muon

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Re: Sjögren's syndrome
« Reply #15 on: November 08, 2017, 10:33:31 AM »
Disaster,

Did they find clustered lymphocytes around your salivary glands and damage to the glands?

Disaster

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Re: Sjögren's syndrome
« Reply #16 on: November 08, 2017, 12:36:27 PM »
My lip biopsy was positive for Sjogren's

Muon

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Re: Sjögren's syndrome
« Reply #17 on: November 10, 2017, 12:59:14 PM »
I understand it was positive but did your doctor tell you any details?

Disaster

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Re: Sjögren's syndrome
« Reply #18 on: November 11, 2017, 10:49:36 PM »
The report says I have a Focus score of 1.0. And it says that score is equal to lymphocytes/50 cells. Something like that.

Muon

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Re: Sjögren's syndrome
« Reply #19 on: December 12, 2017, 01:28:42 PM »
Ok thanks, the focus score is all I need. This means you have infiltration of lymphocytes. IgG4-RD could play a role in this, that's why I was curious about it. This focus score could also fit IgG4 involvement. https://www.ncbi.nlm.nih.gov/pubmed/25100215

''IgG4-related disease (IgG4-RD), formerly known as IgG4-related systemic disease, is a chronic inflammatory condition characterized by tissue infiltration with lymphocytes and IgG4-secreting plasma cells'' https://en.wikipedia.org/wiki/IgG4-related_disease

Can you check out your IgG4 levels? I'm curious about this and may shed some light on POIS. You need an IgG4 test with a cut-off value above the upper reference limit of 135 mg/dl. IgG4 tests with high cut-off limits are hard to find. I have elevated IgG4 myself and wonder if more POIS patients got this as well.
« Last Edit: December 13, 2017, 08:51:05 AM by Muon »

Disaster

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Re: Sjögren's syndrome
« Reply #20 on: December 20, 2017, 07:40:52 AM »
I haven't been tested for IgG4 only IgG subclasses

Muon

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Re: Sjögren's syndrome
« Reply #21 on: December 20, 2017, 11:35:05 AM »
IgG 1-4 are the IgG subclasses. They have probably ruled this out then.

Disaster

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Re: Sjögren's syndrome
« Reply #22 on: December 20, 2017, 11:04:00 PM »
I have low IgG subclasses 1 and 3, normal 2 and 4.

ThisType

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Re: Sjögren's syndrome
« Reply #23 on: January 21, 2018, 10:19:03 PM »
Sjogrens was one i was tested for as my symptoms were somewhat similar. The medical blood screen indicated I did not have sjogrens. I realized after a time that what was causing my poor speech was actually slight swelling of my tongue and lips (which is part of my POIS symptoms). I've documented elsewhere on a different thread, but specifically what solves these symptoms for me is choline (eggs over easy, Thorne choline tablets both work). The Thorne tablets work in about half an hour to an hour and last for a day or so.
Best,
TT




Disaster

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Re: Sjögren's syndrome
« Reply #24 on: January 23, 2018, 04:22:56 AM »
Blood antibodies are only positive in half of Sjogren's and even then further positive testing is needed because the Sjogren's antibodies are found in other conditions like Lupus as well. But negative blood does not by any means rule our sjogren's

Muon

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Re: Sjögren's syndrome
« Reply #25 on: January 15, 2020, 12:54:20 PM »
Migration happens prior to infiltration. Chemokines mediate chemotaxis. I bet you probably have some sort of chemokine elevated Disaster.

Muon

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Re: Sjögren's syndrome
« Reply #26 on: February 13, 2020, 09:50:29 AM »
Chemokine release from mast cells attracting lymphocytes towards certain glands that are involved in sjogren's?

swell

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Re: Sjögren's syndrome
« Reply #27 on: February 18, 2020, 03:15:26 PM »
Hello Vandermolen, I believe you, completely.  I dont like to give this advice, but I am going to:

I believe, dry skin, thinner epithelium layer, breaking apart mucus membranes, these are halmarks (to me) for POIS.  Sjogrens has same symptoms.  Chances are your doc will suspect Sjogrens, however upon advanced testing (i.e. anti-bodies), Sjogrens will be ruled out.  I believe, our thinner epithelium is also the cause for POIS, skin and brain symptoms - skin symptoms being, dry eyes - I used to even get growth under eyelids, dry esophagus (making me susceptible to sore-throat, various allergies), weaker muscles, etc.  And brain symptoms being brainfog, emotional state, anxiety, speech, etc.

I am mostly POIS free now, and trying to get off the too many supplements I take.  I believe, you have to do 2 things:

a) change your diet.  Eat high-fat (healthy fats - plenty of them), and simultaneously reduce your Carbs to minimum. 
b) take 'growth' supplements to help your mucus membranes heal, gut lining grow/heal, epithelium to thicken. 
c) resolve your digestion issues.  Betaine HCL, Digestion enzymes, Bile Salts (purified).

I do not think Sjogren's is at all like POIS. I hade POIS 25 years and Sjogren's 5 years. I never had dryness before 5 years ago. The only symptom similar is the fatigue. But POIS fatigue is caused after Orgasm and Sjogren's is all the time.
POIS Free, 1+ yrs, 3 ejac daily with no POIS symptoms. 
Pois symptoms: Peripheral (Skin: Urticaria, dryness, Grey/blue skin), Nerve weakness, Muscle weakness + Mental (CNS: Brain Fog, Irritation, Isolation, Speech lethargy, Anxiety).
Other conditions: ASD, ADD, GAD.

Disaster

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Re: Sjögren's syndrome
« Reply #28 on: March 09, 2020, 05:25:08 PM »
Hello Vandermolen, I believe you, completely.  I dont like to give this advice, but I am going to:

I believe, dry skin, thinner epithelium layer, breaking apart mucus membranes, these are halmarks (to me) for POIS.  Sjogrens has same symptoms.  Chances are your doc will suspect Sjogrens, however upon advanced testing (i.e. anti-bodies), Sjogrens will be ruled out.  I believe, our thinner epithelium is also the cause for POIS, skin and brain symptoms - skin symptoms being, dry eyes - I used to even get growth under eyelids, dry esophagus (making me susceptible to sore-throat, various allergies), weaker muscles, etc.  And brain symptoms being brainfog, emotional state, anxiety, speech, etc.

I am mostly POIS free now, and trying to get off the too many supplements I take.  I believe, you have to do 2 things:

a) change your diet.  Eat high-fat (healthy fats - plenty of them), and simultaneously reduce your Carbs to minimum. 
b) take 'growth' supplements to help your mucus membranes heal, gut lining grow/heal, epithelium to thicken. 
c) resolve your digestion issues.  Betaine HCL, Digestion enzymes, Bile Salts (purified).

I do not think Sjogren's is at all like POIS. I hade POIS 25 years and Sjogren's 5 years. I never had dryness before 5 years ago. The only symptom similar is the fatigue. But POIS fatigue is caused after Orgasm and Sjogren's is all the time.

Some theories I see that people come up with are so strange. I have POIS and Sj?gren?s. What makes you think ?thin epithelium? is to blame? That is just an odd thing to blame especially without proof..