Sjögren's syndrome

[metabolizm]

I've been suffering from dry eyes and general fatigue for over a year now, and I'm considering Sjögren's syndrome as one possible explanation. There have been surprisingly few posts about this condition here. I asked Ray, and he suggested a thyroid supplement - but that's just about impossible for me to obtain. Any other ideas?

 

[Korven]

I also suffer from dry red eyes and I have no idea to how to fix this. Maybe I have Sjögrens? It's very annoying.

Some say demodex mites and s. aureus are implicated, causing blepharitis, which makes sense because I've had problems with both rosacea and staph outbreaks.

Taking thyroid didn't do anything really for my dry eyes. The only thing that helps is being in a hot humid climate, which I'm not at the moment.

Also interested in hearing other peoples' experiences with this condition.

 

[xeliex]

If thyroid is hard for you to get, look into progesterone. Part of the positive effects of thyroid per se is the ability to make more protective hormones. Experiment with dosing and be open to going high for short periods of time perhaps.

 

[Dr. B]

I also suffer from dry red eyes and I have no idea to how to fix this. Maybe I have Sjögrens? It's very annoying.

Some say demodex mites and s. aureus are implicated, causing blepharitis, which makes sense because I've had problems with both rosacea and staph outbreaks.

Taking thyroid didn't do anything really for my dry eyes. The only thing that helps is being in a hot humid climate, which I'm not at the moment.

Also interested in hearing other peoples' experiences with this condition.

doesnt vitamin A help with lubrication of mucous membranes and eyes.
i think it has a drying effect on external skin but lubricates organs and glands?
do you wear contact lenses or put anything else in your eyes?
personally my eyes got really dry and even shrunk (eyelids shrunk significantly) after I megadosed iodine for 6 weeks... as well as after using pure encapsulations pregnenolone 50mg, for 10 days. Im pissed i tried the stuff just based on things i read online!

 

[Korven]

doesnt vitamin A help with lubrication of mucous membranes and eyes.
i think it has a drying effect on external skin but lubricates organs and glands?
do you wear contact lenses or put anything else in your eyes?
personally my eyes got really dry and even shrunk (eyelids shrunk significantly) after I megadosed iodine for 6 weeks... as well as after using pure encapsulations pregnenolone 50mg, for 10 days. Im pissed i tried the stuff just based on things i read online!

The thing is I've tried eating lots of vitamin A from liver, dairy and eggs and it only seemed to get worse. But then on the other hand I ate a low VA diet for 8 months and that didn't help either.

No I had to stop using contacts because it would be very uncomfortable.

Interesting about the iodine, how much were you taking?

 

[Korven]

Massive Demodicosis of the Eyes in a Patient with Sjögren Syndrome: A Case Report - Acta Parasitologica

Purpose Demodex mites infestation, typically asymptomatic, is a problem for patients with weakened immune systems because it often takes the form of symptomatic, massive infection. The Demodex mites play an important role in the occurrence of a range of eye surface diseases such as Demodex...

link.springer.com

"Our research note involves a 61-year old woman diagnosed with secondary Sjögren syndrome due to rheumatoid arthritis. On the background of the autoimmune disease, corneal perforation of the left eye occurred that was cured by surgery. Then during the follow-up visit the patient was found (microscopically) massively infected with Demodex mites and the developed symptoms were particularly severe."

I would like to get my hands on some ivermectin and see if it helps my dry eyes. Anyone have a good source that's available in Europe?

 

[metabolizm]

If thyroid is hard for you to get, look into progesterone. Part of the positive effects of thyroid per se is the ability to make more protective hormones. Experiment with dosing and be open to going high for short periods of time perhaps.

Thanks for the recommendation, I'll give that some thought.

 

[Dr. B]

Massive Demodicosis of the Eyes in a Patient with Sjögren Syndrome: A Case Report - Acta Parasitologica

Purpose Demodex mites infestation, typically asymptomatic, is a problem for patients with weakened immune systems because it often takes the form of symptomatic, massive infection. The Demodex mites play an important role in the occurrence of a range of eye surface diseases such as Demodex...

link.springer.com

"Our research note involves a 61-year old woman diagnosed with secondary Sjögren syndrome due to rheumatoid arthritis. On the background of the autoimmune disease, corneal perforation of the left eye occurred that was cured by surgery. Then during the follow-up visit the patient was found (microscopically) massively infected with Demodex mites and the developed symptoms were particularly severe."

I would like to get my hands on some ivermectin and see if it helps my dry eyes. Anyone have a good source that's available in Europe?

what causes the autoimmunity, it seems its too much estrogen, too little thyroid function?

The thing is I've tried eating lots of vitamin A from liver, dairy and eggs and it only seemed to get worse. But then on the other hand I ate a low VA diet for 8 months and that didn't help either.

No I had to stop using contacts because it would be very uncomfortable.

Interesting about the iodine, how much were you taking?

3-4mg potassium iodide once a week for 6 weeks. it messed up my eyes and mouth... dried out both. i actually tested positive for sjogrens a few months after stopping the iodine, but it was mild. it was like 40 antibodies or something, whereas some people have thousands.
but, the pregnenolone usage for 10 days, had to be much more severe. i couldnt even wear contacts after using that stuff.

 

[skuabird]

I have very Sjögren's syndrome-like symptoms. Dry eyes with blurry vision- more obvious red veins in my eyes. Swollen salivary glands- my inner cheeks swell against my teeth. Fatigue that seems to get worse in bouts with the dry eyes and swollen salivary glands. Seems to get worse about the middle of my menstrual cycle, in the luteal phase.

I've tried desiccated thyroid, pregnenolone, progesterone and DHEA. Symptoms still come and go in bouts.

"Our research note involves a 61-year old woman diagnosed with secondary Sjögren syndrome due to rheumatoid arthritis. On the background of the autoimmune disease, corneal perforation of the left eye occurred that was cured by surgery. Then during the follow-up visit the patient was found (microscopically) massively infected with Demodex mites and the developed symptoms were particularly severe."

I guess that's why some natural treatments suggest castor or coconut oil applied around the eyes?

I would like to get my hands on some ivermectin and see if it helps my dry eyes. Anyone have a good source that's available in Europe?

Everything keeps coming back to ivermectin. lol It would be interesting if some de-wormer/anti-parasite was effective for an autoimmune disorder. It just seems too simple.

 

[korpesh]

I have struggled with very dry eyes on and off through the past years, and although I don't think it's very "peat" like, I swear supplemental choline helps, especially Alpha GPC. Not sure the mechanism, but if you search online, I believe you can find some evidence of a correlation.

 

[Dr. B]

I have very Sjögren's syndrome-like symptoms. Dry eyes with blurry vision- more obvious red veins in my eyes. Swollen salivary glands- my inner cheeks swell against my teeth. Fatigue that seems to get worse in bouts with the dry eyes and swollen salivary glands. Seems to get worse about the middle of my menstrual cycle, in the luteal phase.

I've tried desiccated thyroid, pregnenolone, progesterone and DHEA. Symptoms still come and go in bouts.


I guess that's why some natural treatments suggest castor or coconut oil applied around the eyes?


Everything keeps coming back to ivermectin. lol It would be interesting if some de-wormer/anti-parasite was effective for an autoimmune disorder. It just seems too simple.

I developed severe sjogrens (and other autoimmune) symptoms after megadosing iodine for 6 weeks. it was 3-4mg potassium iodide once a week for 6 weeks. by the way, i tried pure encapsulations pregnenolone months after stopping the iodine, that brand is like the most expensive pregnenolone on the market, 2-3x the price of other ones, and the pregnenolone caused severe symptoms, massively dried out and shrunk the eyes and mouth far more than even the iodine. so somehow pregnenolone does something to sjogrens. i had only like 40 antibodies 3 months after stopping the iodine, so the doc and rheumatologist didnt want to put me on prednisone both since i was male, young, and the antibodies were only so slightly elevated (some people have them in the thousands).

when i used ancestral supplements liver, bone marrow, thyroid/spleen and a few other organ supplements, that seemed to cause some improvement in the dry eyes and mouth. i had slow improvements, till the pregnenolone was added in which messed everything up.

even over a year after stopping the preg, the eyes still remain as dry and shrunken. i went from having huge eyes to having eyes that look more asian or like im squinting in appearance. it seems as they get dryer the eyelids close more for some reason and as they get more lubricated they widen up back to normal.

the eye symptoms do get worse if i eat a meal of processed bread, especially if its repeated for a few days. and even seem to get worse from processed milks. like a burger bun, or a pizza slice, or non organic milk with vitamin additives, all seem to cause exacerbation of the dry/shrunken eyes. whereas if i stick to organic whole milk, no starches, no vitamin filler milks, the eyes do seem to return to normal, but still nowhere near close to what i had before using the pregnenolone/iodine.

i suspect that it would probably take a very long, extensive period of avoiding vaccines, avoiding xrays, avoiding fluoridated water, minimizing pufa, minimizing toxic food filler ingredients like carrageenan and other gums, minimizing probably most supplements besides maybe just a basic vitamin d, and organ supplements, vitamin k2 once in a while if needed

by the way, vitamin E (both thornes ultimate E and idealabs) also seem to cause exacerbation of the dry eyes. im not sure of the mechanism, it seems to have some sort of immune stimulating effect. vitamin K2 MK4, in a dose dependent manner, also causes exacerbation of the dry eyes and even some hair loss. vitamin d3 seems to have no impact, at least day to day, but longer term seems it could help. so there is something going on with vitamin k2 and E where they can also exacerbate things somehow. i have no idea of the mechanism since they both seem very peaty and pro metabolic. but ive had some improvement from limiting the K2 to just once a week, and its a dosage of 1.5mg MK4, 300mcg Mk7, 1mg K1. I also have limited the vitamin E to thornes ultimate E just once every 2 weeks. diets low pufa in addition.

creatine supplementation does seem to worsen symptoms also and this is the cleanest, purest stuff, creapure or whatever it is from germany. i used the same stuff before the iodine/preg experimentation and seemed to do fine, like my eyes looked big enough. but now, the creatine causes exacerbation. creatine has a choline sparing effect (since methionine and choline are normally used to synthesize creatine in the body). ray has said estrogen causes you to produce more choline or acetylcholine. so it seems the dry eyes/mouth is not in fact caused by too little choline. choline probably doesnt help. i have tried shark liver oil supplements as well as choline bitartrate and they also seem to worsen or have no change to the dry eyes.

there is something else going on. obviously, the breads, and anything which increases estrogen and general inflammation, increases the dry eyes. as you mentioned your cycle caused an increase in it.
however im not sure of the mechanism of why creatine, vitamin E, vitamin K and pregnenolone supplements exacerbate things. maybe those things all raise cortisol? that is the only thing i can think of. because at least the creatine, vitamin E and K, those three are all anti estrogenic supplements. maybe pregnenolone is anti estrogen, or maybe it can convert to estrogen in stressed people.
i cant see how creatine/vitamin k and e can raise estrogen, but i can see K and creatine can possibly raise cortisol or somehow raise stress in the body, maybe by depleting other nutrients or in creatines case, increasing choline and the amino acids which normally make creatine.

also, ashwagandha also seems to worsen the dry eyes/mouth. if you google ashwagandha thyroid, ashagwnadha autoimmunity, it seems like it can increase autoimmunity in susceptible people, and cause thyroid inflammation in susceptible people.

dhea also definitely seems to worsen symptoms, even 7 keto dhea. and those both should be lowering cortisol, so the mechanism there is probably estrogen.

any thoughts as to what it could be? i think its clear high inflammation, inflammatory foods, estrogenic foods/substances and cortisol inducing supplements (which inflammation causing foods/supplements would cause) are involved.

 

[Dr. B]

I have struggled with very dry eyes on and off through the past years, and although I don't think it's very "peat" like, I swear supplemental choline helps, especially Alpha GPC. Not sure the mechanism, but if you search online, I believe you can find some evidence of a correlation.

i had the opposite effect, at least from supplementing choline bitartrate, and creatine monohydrate on separate occasions. the creatine should increase choline since it spares choline/methionine usually used to make it. btw, as you implied peat does dislike supplementing methionine, choline, and betaine. he's commented estrogen increases acetylcholine synthesis, and he thinks choline should only be ingested in the amounts received from milk, eggs and liver (which are the highest choline foods). it's odd that the choline/creatine usage, they cause more oiliness/moisture in the facial and even body skin and hair, but when it comes to the mouth and eyes they seem to dry them out more. i cant tell what effect vitamin D is having but it doesnt seem to be bad nor good, and it seemed like things were improving when i implemented organ supplements like thymus, bone marrow, liver, thyroid. so it could be the vitamin A involved from those organs, or some other nutrient, maybe copper, maybe iron?

 

[korpesh]

i had the opposite effect, at least from supplementing choline bitartrate, and creatine monohydrate on separate occasions. the creatine should increase choline since it spares choline/methionine usually used to make it. btw, as you implied peat does dislike supplementing methionine, choline, and betaine. he's commented estrogen increases acetylcholine synthesis, and he thinks choline should only be ingested in the amounts received from milk, eggs and liver (which are the highest choline foods). it's odd that the choline/creatine usage, they cause more oiliness/moisture in the facial and even body skin and hair, but when it comes to the mouth and eyes they seem to dry them out more. i cant tell what effect vitamin D is having but it doesnt seem to be bad nor good, and it seemed like things were improving when i implemented organ supplements like thymus, bone marrow, liver, thyroid. so it could be the vitamin A involved from those organs, or some other nutrient, maybe copper, maybe iron?

Yeah, I'm not really sure how or why it seemed to have a positive effect for me. I've definitely not had the same effect from creatine, which I've taken in stint fairly frequently. If I take creatine for a week or so, I start to seem to get dehydrated more easily, including dry eye symptoms. And honestly, I'm not positive if any choline would have the same benefit, I've only notice the benefit to dry eyes coming during my use of Alpha GPC. The possible different mechanisms of action depending on the choline type are beyond my biological understand.

 

[Dr. B]

Yeah, I'm not really sure how or why it seemed to have a positive effect for me. I've definitely not had the same effect from creatine, which I've taken in stint fairly frequently. If I take creatine for a week or so, I start to seem to get dehydrated more easily, including dry eye symptoms. And honestly, I'm not positive if any choline would have the same benefit, I've only notice the benefit to dry eyes coming during my use of Alpha GPC. The possible different mechanisms of action depending on the choline type are beyond my biological understand.

interesting, btw on amazon and from my experience choline bitartrate and apparently alpha gpc, in many people they cause an increase of acne, sometimes increased salivation, increase in sweating, increase in anxiety, increase in oily skin and hair, and boosts of strength in the gym. they may have some sort of strength boosting effect related to the acetylcholine boost. but creatine, and choline bitartrate gave me all those effects besides the increased salivation. creatine, seems its indirectly due to it increasing choline/methionine levels.

 

[Korven]

I guess that's why some natural treatments suggest castor or coconut oil applied around the eyes?


Everything keeps coming back to ivermectin. lol It would be interesting if some de-wormer/anti-parasite was effective for an autoimmune disorder. It just seems too simple.

Thanks I will try applying castor oil to eyelids/meibomian glands before going to bed.

It should work according to this study - perhaps because the oil suffocates the demodex mites?

Randomized trial of topical periocular castor oil treatment for blepharitis - PubMed

ACTRN12618000856213.

pubmed.ncbi.nlm.nih.gov

Lol yeah seems like ivermectin can fix everything. I've been wanting to try it for years ever since I read about rosaceans using horse paste containing ivermectin to control their symptoms. Some people have seen their lifelong "acne" gone away with a 14 day ivermectin course.

 

[Nemo]

I've been suffering from dry eyes and general fatigue for over a year now, and I'm considering Sjögren's syndrome as one possible explanation. There have been surprisingly few posts about this condition here. I asked Ray, and he suggested a thyroid supplement - but that's just about impossible for me to obtain. Any other ideas?

This is all over the forums and social media right now, @skuabird is dealing with the same thing, and all of it started during Covid or vaxxing.

The very first thing I'd try before going crazy with other stuff is the antihistamine treatment for spike proteins.

You take an H1 blocker at night. What's usually used is Zyrtec (cetirizine). It makes you sleepy. You take the minimum dose, one pill, the lowest dose they make.

You take an H2 blocker in the morning. What's usually used is Pepcid (famotidine). Take the lowest dose they make, 10 mg.

See if it helps. This antihistamine treatment has been shown in vitro to block spike proteins from ACE2 receptors. You want to do that because they are chelating your copper and causing copper/iron dysregulation that leads to super high ferritin levels that lead to most of the bad things caused by the spike proteins.

The spikes also attack your mitochondria and downregulate your carbohydrate metabolism by attaching to your Dectin-1 receptors. That causes energy disorders.

This antihistamine treatment has also just had a human trial in roughly 450 patients. It not only completely cured Covid, it cures "Long Covid". And it's an effective prophylactic against Covid and spike protein illness.

You take the antihistamines until you feel better. Different people seem to clear the spikes at different rates. Some feel cured in a week, others in a month. Some need it longer. Some have to use ivermectin too. Usually those are the people who had a really bad case of confirmed Covid.

Even if you never had Covid, and even if you tested negative for Covid, it's been shown you can have spike proteins in your monocytes and brain doing all kinds of damage.

If you don't get good results fairly quickly, then you may have to try a slightly higher dose or start looking hard at thyroid or Sjögren's.

 

[redsun]

I have struggled with very dry eyes on and off through the past years, and although I don't think it's very "peat" like, I swear supplemental choline helps, especially Alpha GPC. Not sure the mechanism, but if you search online, I believe you can find some evidence of a correlation.

Its because acetylcholine receptors control tear production. Choline, zinc, manganese, B-vitamins can all help.

 

[korpesh]

Its because acetylcholine receptors control tear production. Choline, zinc, manganese, B-vitamins can all help.

That makes sense. Thanks!

 

[Dr. B]

Its because acetylcholine receptors control tear production. Choline, zinc, manganese, B-vitamins can all help.

but doesnt estrogen upregulate acetylcholine production yet estrogen also promotes sjogrens syndrome? choline bitartrate supplements seem to worsen dry eyes for me

 

[redsun]

but doesnt estrogen upregulate acetylcholine production yet estrogen also promotes sjogrens syndrome? choline bitartrate supplements seem to worsen dry eyes for me

Estrogen increases PEMT (which makes choline). Doesnt necessarily mean more acetylcholine production. Its dependent on acetyl-CoA production as well as certain vitamins and minerals that are needed to maintain acetylcholine receptor function as well as being able to inhibit Ach breakdown via acetylcholinesterase enzyme. Other hormones affect acetylcholine activity as well. Its much more complicated than that.